It is about to get a bit personal in here…so if this bothers you and you are coming here from some crafty goodness, you might want to come back tomorrow for a Christmas related tutorial! But I wanted to share a little bit about what has been going on with me “behind the scenes” if you will. I don’t share a lot of personal stuff on here but today I wanted to share with you something that I have been dealing with for the past couple of years now that I FINALLY have an explanation for. I do this for myself and hopefully for others who may be finding themselves in a similar situation.
Ever since giving birth to my fifth and last child, I have felt a bit “off”. Nothing big or alarming, but I just didn’t feel like myself. I had this feeling to a certain extent with the birth of all my children as my body went through many changes from pregnancy, delivery, nursing and then through recovery. I felt like with each pregnancy my body took longer to bounce back to its pre-pregnancy condition. But when I gave birth to my last child four years ago, I just never felt like my body “bounced” back. I felt like I am still waiting to get my body back. Does that make sense?
I was still suffering from a lot of the side effects of pregnancy. I just kept thinking it was eventually going to get better. But instead of getting better, it seemed like my symptoms were getting worse. I was feeling sluggish and fatigued to the point where I would wake up from 8 hours of sleep and want to crawl back in bed and take a nap. This was so unlike me. I have never been able to take naps because I would lay there thinking of all I wanted to get done. I was also having brain fog and memory loss issues frequently to the point that it was interfering with my functionality. I was also beginning to develop some pretty serious carpal tunnel in my forearms and my elbow joints to the point that I would wake up with them numb and aching.
I was also starting to experience some mild hair loss and my hair started to feel coarse and dry. I attributed this to the fact that I had been spending a lot of time in the pool swimming and training for the triathlon I had completed earlier in the spring. I also started getting mild headaches more often, though they never really got to the point of becoming debilitating…just more of an annoyance really. Then…my neck started to feel swollen, like I had a tight turtle neck on. My hands and feet would swell sometimes as well and since it was summer time I chalked it up to the heat.
But then I started seeing pictures of myself like this one below. What??? Why is my face so swollen? I would ask my friends and family…”Does my face really look like that?” And they were like…”not at all!” But there was the proof staring right back at me. Then it was happening more and more often in my pictures. And look at my neck in that picture…see how swollen it is on the sides?
So back in the summer of 2010 I decided to figure out what was going on. I KNEW something was wrong but didn’t even know where to start. I went to the doctor and had some tests and everything came back normal. I got the “your getting older and your metabolism is slowing down” speech. So I tried to put it out of my mind and concentrate on eating better and getting more exercise.
I started eating better and started running again more regularly. I did start to feel a bit better and thought things were going to start changing. I decided to run a half marathon and thought that would be the perfect kick start to lose the 10 pounds of baby weight that I still hadn’t been able to lose. But with all the running and training and eating right I started to slowly gain weight. I thought…maybe I am gaining muscle since I was running up to 20-30 miles per week for a while.
(When I look at this photo of my race, I can see the face swelling as well. I feel like this other photo of me, is more what my face actually should look like.)
I started to feel really anxious and irritable about the littlest things. When I was running, my feet felt like two bricks. I look back now and can’t believe I was even able to run my half marathon. I was tired all of the time and always felt cold. I was slowly gaining weight and I just felt “crazy”! My brain was foggy and I was forgetting so many things. Things that I had normally been so on top of. I started to feel like I didn’t even know who I was anymore. And I had no idea what to do about it. It was affecting me and every aspect of my day, and people were beginning to notice.
Then right before my race in August of 2011, my hair started falling out by the handfuls. I would wake up in the morning and my pillow would be covered with hair. This perhaps was the most alarming symptom for me for some reason. I could not explain it away I guess…and I liked my hair ! I had previously shared my concerns with my friends and family when one day my mom suggested that I could have Hypothyroidism. My mom actually has it and it can run in families. So I found a new doctor and went to get a TSH blood test. This doctor was one of the rudest, most condescending doctors I have ever been too. She did not listen to one thing I had to say and kept shrugging off the list of symptoms I was sharing as “part of getting older”. Then she proceeded to give me the “exercise and diet talk”…like training for a half marathon wasn’t really an exercise plan….really??! I was so frustrated! She did tell me that my resting heart rate was unusually low…49 beats per minute, and that my Thyroid gland did feel enlarged. She sent me to the lab to get some tests and told me she would contact me with the results. A week letter I received a letter in the mail with my test results and a typed message that all looked “NORMAL”! Gah! I knew I was not my “normal” self…regardless of what the normal test standard said.
So I kept researching and was pretty positive I had an underactive thyroid. I had about 95% of the symptoms. Here is a site that lists many of the symptoms I was having. And then my voice started getting noticeably more and more hoarse. People would call me at 9:00 in the morning and ask me if they woke me up. And I was like…”no”! But they would never believe me. Then I started to notice it more and more often and during the middle of the day and in the evening.
My husband found a doctor who had some really great reviews from people who had been told they were “normal” when they did indeed have a low functioning thyroid. I went to see him in October and he was so great. He sat and really listened to me and asked me a lot of questions. He was so great! He said that even though my TSH test was in the normal range, it was on the high end nearing the abnormal range. So, because of that he ran several more blood tests including a T3, T4 and T antibodies, Vitamin D and Calcium tests. Well, it turns out that I was right. I am hypothyroid and…not only that, I have a Vitamin D Deficiency. I was really surprised at this news since I spent so much time outside. But the doctor told me that having a low thyroid production can affect your Vitamin D levels. I also found out that I have Osteopenia (pre-Osteoporosis). Yikes!
He immediately started me on some Thyroid medication at a low dose and I go back in a couple of weeks to get my blood levels tested again. This could be a long process to get my medications to the point that they are just right to control my condition. But I have to tell you…when he personally called me on the phone to tell me about my condition I just about cried from relief. Not that I was happy to have a condition that requires medication for the rest of my life, but I felt vindicated and relieved that there really was an explanation for all of my symptoms. I have tried to learn all that I can about what this mean for me and my health and the best way for me to get back to being myself again.
I already feel a little bit better…but I am not sure if it is because I have an answer to my many frustrations the last couple of years or if the medicine is starting to work. Probably a bit of both.
I found the following from Livestrong.com that explains pretty well what was happening…
“Hypothyroidism is the result of the thyroid gland not producing enough T4 and T3, causing the metabolism to slow down. As a result, people with hypothyroidism may experience weight gain (from not burning enough energy), as well as feelings of fatigue and lethargy. Patients may feel cold because the burning of energy creates heat, which helps to maintain body temperature. Hypothyroidism can also cause dry skin, constipation, hair loss and irregularities in women’s menstrual cycles; all normal body processes slow down due to the decreased use of energy”.
With all that being said, I know that this a health issue that can be managed if I take my medication daily. But anytime you feel out of sorts or not yourself, every area of your life suffers. The thing I feel the worst about is that is was affecting how I was being a mother to my children. I didn’t even realize just how much it was affecting me and them. When momma ain’t happy…ain’t nobody happy! My doctor said that pregnancy can trigger hypothyroidism in women and feels that my last pregnancy my have triggered it and that my symptoms continued to worsen over time.
So, my resolution for the new year is Balance.
I really want to focus on developing the best habits for me to become balanced again…Balanced physically, emotionally and spiritually.
I also hope that by sharing my story with you that it may help some of you who may be experiencing some the same issues and to encourage you to continue to find someone who will listen to you. I have learned that there are many others like me who are told that they are “normal” when in fact they are not. The longer a diagnosis gets put off the sicker you and your body will become. I would also love to hear from some of you who may also be hypothyroid and may have some advice for me as I begin to try and get this under control.
As always, I want you to know how much I appreciate being able to interact with you. With all the craziness in the last few months, my blog, other than my husband and kids, has been something that has kept me motivated to keep doing things I loved!
*Update: To see an update you can go here.
For more information on how I am using Essential Oils to support my healthy today click on the button to learn more.
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laura lok says
great article and everything you said is everything that happen to me after 10 years now still struggling to lose those last 20 lbs that just wont come off no matter how much exercise and nutriation change I do. ugh very frustrating probably the most frustrating part of the whole thing especially since all my life I have been very high energy and very small.
why is it so many doctors simply shug off women with the old you are getting older, you need more exercise, you are imagining things routines?
hope this catching the attention of many others there are many people that go undiagnosed or misdiagnosed.
Liz t says
Thanks for sharing! I’ve had doctors tell me that I have nothing wrong with me when I KNOW I’m not doing well. You fire someone who is doing shoddy work remodeling your house, you need to do the same for your doctors. Also, I had many of the same symptoms but mine all stemmed from my Mirena IUD, I know quite a few women personally that have had horrible side effects. Just another option to explore if needed.
Amy R says
Hi Amy – I think it is great that you are sharing your story with your readers. My husband and I both have found that more times than not, our doctors are just not listening to us. We women especially have that problem. And, if a diagnosis of depression ever existed in ones past, getting someone to hear you say you are not depressed and something else is going on is near impossible. I hope you have begun your recovery and are starting to feel yourself mroe and more every day. It may take some time to get the meds right, but hopefully that day will come soon. Thanks for reminding us all once again that we all have to be our own advocate. We need to keep asking questions and if need be, change doctors.
Melanie Hood says
I had my tsh checked twice before my dr. finally diagnosed it. The second time he was impressed how much different the levels were. I was 7.1 and then a 5.2 … He asked me if I had made any dietary changes. I said no. But, then I went home and started researching it and realized I had unknowingly helped it a little by changing my salt. I was eating plain sea salt…and had switched to iodized salt. Apparently iodine helps the thyroid work.
He prescribed me Synthroid but I am recently without medical insurance, so I am not taking anything or able to get my blood tested again. Meh.
I used to work in Endocrinology before becoming a SAHM. Melanie – have you checked to see if you’re eligible for a patient assistance program to get your Synthroid? Here’s a link: http://www.rxassist.org/pap-info/company_detail.cfm?CmpId=65 One of my responsibilities was helping patients get free endo drugs, so that’s why I thought to suggest this to you.
The medicine isn’t too costly. But, the blood tests and dr. visits are. That’s where I’m stuck. Thanks for the link though. :-) I have a couple refills left.
Melanie, I would definitely look into that program mentioned above. It’s no fun feeling so bad and you will feel so much better when you can take your medicine. I don’t have medical insurance either so I actually get the generic Levoxyl medicine. It costs me around $17 a month to fill. Good luck, I hope you are able to get what you need soon.
Kirstin,
I take generic too and you can get a 30 day supply for $4 or a 90 day supply (you need to ask your doc for a 90-day prescription) for $10 at walmart.
I don’t know if Tara remembers or told you, but I have been hypothyroid since birth! I would love to chat about anything… I had a great Dr. in Utah, I learned to not take thyroid medicine at the same rime as iron or your body won’t absorb the medicine, also don’t take with soy products. Another tip is to take brand medicine! My body wouldn’t absorb some of the generics. Some were chalky and the makeup wasn’t as consistent as brand. Once I stuck to synthroid, my labs were more stable. This has been a lifelong journey for me and I am glad your wise mom had that intuition and she was right! Mothers know best. Feel free to email about anything!
I am SOOOOO happy about the Hype for your Hypo. :) I know what it feels like to be told that there’s nothing wrong when you KNOW there is. It’s so frustrating. And demeaning. It made me feel stupid. I wanted to stand up and cheer when you figured it out! And I can’t even imagine 100% Amy if I’ve only known 70% Amy! Geez! I for sure won’t be able to keep up with her. And PS….all I see is beautiful in every one of those pics. Sooo……just in case you were wondering. Love you like crazy!
I understand the thinking that if you can help even just one other person, the sharing will have been well worth it! I am so happy to hear you found the right doctor. Thyroid problems run in my family (so far, knock on wood, I am ok). I do know it took years for those family members to be diagnosed. I also know what it is like to be told it is all in your head and ignored. It took me about 15 years to finally have a diagnosis for what I was dealing with. At least knowing my triggers is most of my battle and I have been in control ever since. :) I hope they find the level of meds that work for you soon. Also, make sure you are familiar with the side effects of the medication you are on. What works for one may not work for the next. I wish you all the best. Take care!!
Amy-
Thank you for sharing this. We should all be honest on our sites about our health…I hope it reaches some of your readers that have some of the same symptoms.
I hate when doctors are condescending! We really need to be advocates for our own health…
The same thing happened to me after I had my second child. Without going into too much detail, I dropped 20 lbs and wasn’t keeping in ANY food after I weaned him at 15 months. I was tired all the time, beyond normal. The hair falling-out, acne like a teen…
I was a hot mess.
Lo and behold, I had developed an allergy to gluten. My body was critically low in magnesium , vitamin d, etc.
Once off the gluten beast for a few months, my energy regained, migraines disppeared…and I was back to myself…
I guess I share this in detail, because I hope your readers see the connection between what’s in our bellies and our well-being…
:)
This made me cry. I had 2 kids within two years and have felt this way ever since. I’m in the same boat with all the “normal” numbers. I am overweight but I exercise daily with no results. I freeze, horrible dry skin, hair loss and have to put everything in my phone with an alarm to remember. Thank u for sharing your story. It brings me hope and the conviction to not give up.
Always persist when you know something is wrong. Thyroid disease is not just a benign illness that ‘fat’ women get. I had hyperthyroidism, thought i was loosing my mind and was just becoming so thin. My hair fell out at alarming rates and my body went nuts. While trying to control the Graves Disease (a form of hyper) I suffered several strokes leaving me, well very sadly, not as i was. 6 years on it is a daily struggle with my health. This is not a common end result but it does happen, and did for me, so for the sake of a blood test keep at the Dr if you’re not feeling right.
Thanks for highlighting the hype of hypo!
Hey Amy, thanks for sharing your personal struggles with us. As I was reading… I couldn’t help but relate to many of your symptoms. I haven’t been to a doctor about the symptoms that I’ve been having mostly because I always put others ahead of myself. But your story has really caused me to research a little more about your condition and my symptoms. I’m going to make a doctor’s appointment 1st thing tomorrow. I wish you all the best and thanks for sharing =)
I could have written the exact same story (minus the 1/2 marathon : ) about myself. I am currently taking
Armour, but am still struggling to “regulate” my body and feel “normal” again. I had twins and my body has gone through dramatic changes. Thanks for sharing your story. I wish you all the best!
I loved this post. Not because I’m happy you have low thyroid but because it shows that you can get what you need from doctors if you keep looking for the right doctor who WILL listen to you. I was diagnosed with low thyroid during the first trimester of this third pregnancy (only two more months to go!). After getting on medication, I am convinced that I have had a low functioning thyroid for most of my life. The medication has cleared up things I’ve been struggling with since I was 14! But my blood work has never shown it until now. I know that when we move, I will probably have to struggle to find a doctor to listen to me because my blood work may go back to not indicating a problem. I don’t know. Thank you for sharing your story. It is inspirational. Truly.
I am literally in tears right now. I have most of your symptoms. I have osteopenia, vit d deficiency and borderline abnormal tsh, but was ruled healthy by my ob and an endocrinologist. Both supposedly top drs. I dont know who to go see. How do you convince the dr you need help?
Hi Amy, my neck used to look swollen too, it was the first thing I noticed . I was diagnosed 5 years ago but it took 3 years and 3 doctors before I was diagnosed. I started out as the same symptoms as you but got even more as it progressed. I was finally diagnosed with Hashimoto’s Disease. It’s an autoimmune disease linked to hypothyroidism. Were you tested for that also? Because I went undiagnosed for so long I have damage to my nervous system and heart and because of a poor immune system I get sick fairly easy. If you haven’t been tested, I would recommend doing so. It’s a simple blood test. My levels are being checked every six months at this point. I have more good days than bad days now. Weight loss is still hard because my body just isn’t healthy. Last Spring I had a biopsy on my thyroid because they thought I might have thyroid cancer. Thank heavens it came back negative, but it was a scary time. If you ever need to talk I know exactly what you’re going through. I’m determined to get as healthy as possible. I just found out 3 months ago that I have Celiacs Disease. I’ve been off gluten for 3 months and feel much better all around, so maybe that’s helping too. Take care!
Thank you for sharing your story. I have every single symptom you’ve listed and have had them for the past 6 1/2 years (since the birth of my third child). I have gained 50 lbs in two years and 40 of it was in one year. My hair loss was so bad at one point that I went to a hair salon and bought colored spray, to spray my scalp so it would match my hair color. I’ve had some aching joints to the point that I couldn’t hold a pen to sign my name. I also have ongoing swelling in my hands and especially my feet. I have developed a skin condition that hasn’t gone away in 5 years. I was so tired that I would drop my kids off at school, come home and sleep, only to get up to pick them up from school. All the while I was seeing a few doctors trying to tell them that something is wrong with me. All said it was in my head and that I needed mental help, which I began to believe. I consulted a therapist who, after a month, told me I had a medical issue, not a mental issue and ordered a blood panel. It turns out I was severely anemic and vitamin D deficient. I have been taking 10,000 i.u.s of Vitamin D3 for 2 years now and each time I get my levels retested, I’m always just in the low end of normal range. My thyroid tests come back at lower end of normal and so here I still sit with all the same symptoms. I hope to find a Dr. like the one you found who will take the time to hear my symptoms and actually take action to help me. It’s NO Fun to live this way. I am glad you are getting help, it’s good to know that there is hope for some of us suffering with the same symptoms. Again, thank you so much for sharing.
I have thyroid problems as well. Mine was diagnosed as hypERthyroidism, but I had all the symptoms of hypothyroidism. My aunt has hypothyroidism, and had a hard time being diagnosed. The standard TSH doesn’t necessarily show when you have a problem. If it is suspected that there is a thyroid problem one should definitely push the doctor to run more comprehensive tests- and find a new one if they won’t do it.
It is nice to see that you are sharing your experience. I hope it will bring awareness to others who are going through the same thing.
Thank you for sharing your story! Ever since my youngest child was born 3 1/2 years ago, I have become increasingly drained, forgetful and feel like somethings just not right, as well as the fact that I cannot lose the extra 40 pounds I gained while pregnant with him. With my first 2 kiddos the weight took a little time to come off but within the first year I was close to my pre-baby weight. I had just figured this extra weight had to do with now being over 30 and not getting as much exercise until I started exercising more without any results! I am pretty much convience that something is going on with my thyroid. Being that there is also a family history of it I wouldn’t doubt that somethings not right. After reading your post I am definitely going to make an appointment with my doctor…and if he doesn’t help me than I’ll be making a few more appointments with a few more doctors.
Again, thank you for letting us into your personal life…you just may have helped a few more ladies figure out why they just don’t feel like themselves.
~ MC
Tanto el hipertiroidismo como el hipotiroidismo son enfermedades hereditarias y normalmente se desarrollan tras un cambio hormonal, mi madre hace más de 20 años que fue diagnosticada de hipertiroidismo y aquí en España todos los años nos hacen pruebas a mi y a mi hermana para ver si estamos desarrollando la enfermedad y la verdad es que los médicos es lo primero que buscan cuando les describes los síntomas que, siento que en tu país haya tanto desconocimiento de esta enfermedad, aquí normalmente el diagnóstico es rápido. Una vez tomes la medicación adecuada podrás tener una vida normal. Un saludo y muchos ánimos.
I’m so glad that you are on the path to recovery.
Hi Amy :) I also have hypothyroidism. It took the doctor a full year of adjusting my meds every month to get the right balance. Then recently I had to go on blood pressure meds. The pharmacist actually told me that I should take my BP med at least 4 hours apart from my thyroid med because any upset in the balance can affect it. So I have always taken my thyroid med in the morning with a baby aspirin, and at night before bed I take my blood pressure med. Glad you shared your story and that you were persistent. Unfortunately, many doctors think they are God and often times shrug off what we tell them. So it’s important to keep asking and get second and third opinions if necessary!
I identify so much with everything you wrote(not the half marathon, my longest race is a 10k.) I’ve felt off for a long time, and have been putting on what I consider to be ridiculous amounts of weight, my joints ache, my fingers swell, etc. At my insistence, my doctor tested my levels and said I was just getting older. She says that my thyroid feels enlarged, but that I test normal. This has been going on for a couple of years, and I’m starting to feel nutsy. I told my hubs that I’m going to insist on a referral to an endocrinoligist after the holidays. Was it an endo that finally diagnosed you, or a new gp? Thanks so much for sharing your story.
WOW. This could have been me about 4 years ago. I had joint pain on top of what you were having…all my regular doctors said the same things yours did…tests “normal.” It was maddening because I felt like I was not going to make it to old age if things continued. My reg doctor kept asking “do you think you are depressed?” My answer? “Well, if YOU had this laundry list of symptoms and everybody kept telling you that you were “fine” would YOU be depressed? Thankfully, I went to my mom’s endocrinologist and he dx me with hypothyroidism. I’ve been on 100 mcg of Synthroid for about 4 years now and I feel FANTASTIC!!! I also have Vit D def and the addition of 2,000 IU’s of Vit D3 has made an even BIGGER difference for me. I am so glad that you finally found your answer. As a side note for anyone else going through this…they need to not just look at the TSH….your TSH could be “normal” but if they look at the other two hormones T3 and T4 and one or both are elevated…that shows that your thyroid is working soooo hard to keep those levels “normal” that eventually it will burn out. My mom had that happen, went underdx for YEARS and finally ended up with HYPER thyroidism..we thought she was having a stroke when she started having the symptoms. Again, thanks for sharing and so glad that you have your answers. :)
A person’s thyroid gland affects so many things in the body. Depression could be one.
I can’t thank Amy enough for putting this out there. No one should take no for an answer if that is not how YOU feel. No one knows your body like you. Another thing that I forgot to write on my comment is that it is also a lot harder to lose weight. We are not lazy, or just fat by choice, it just takes a lot more of us – and that is very hard to fit in to a hectic life but never give up the fight!
Amy, you have opened up a great can of worms! thank you , thank you, thank you
cms
wow, amy. thanks for taking the time to share for those who may be going through something similar. i am glad you are getting treated and wish you all the best in health and life.
I so appreciate your willingness to share your experience! I was diagnosed with postpartum hypothyroidism after the birth of my last child. After a year on Synthroid, my blood levels evened out and my doctor took me off the medication, saying that she felt it had been a temporary condition. It’s been four years since then, and I still don’t feel “normal.” Dieting and exercising (two half marathons!) haven’t done a darn thing for me, and I continue to gain weight. I’ve had other symptoms, too, but every doctor I’ve seen just does the TSH test and says there isn’t any problem with my thyroid. I actually have an appointment to see my doctor today, so I think I’ll bring up the other tests and see if I can get her to prescribe them. Thanks so much for bringing this up–it’s the kick in the pants I needed to help myself!
I was just reading an article on the “new normal tsh.” It turns out that a lot of doctors are still going by the old recommendation of .5-5.0 for TSH levels (which has been out of date since 2002! Yikes!) when the new recommendation is .3-3.0. I wonder if that’s been my problem! But it might be worth it to find out what your actual numbers are and what your lab considers abnormal. If they don’t flag anything unless it’s over 5.0 and your doctor isn’t reading the test results carefully, they might be missing that you’re at 4.0 and feeling like crap! I just called my doctor to find out my numbers after reading this post and am waiting for them to call me back. It would really explain a LOT about how I’ve been feeling, not to mention my vitamin d deficiency!
i am new to your blog and so glad for you that you didn’t listen to the doctors. i have had many medical issues over the past 6 years that were induced by a divorce and loss of my father. I too had been diagnosed with hypothyroidism..at the age of 29! I was determined not to be on meds the rest of my life to control, so i got ‘thyroid for dummies’ and homeopath books and low and behold, got the levels back to normal. I do also have an autoimmune disease, for which i am on a regimen of vit d and other vits (again, trying to control without meds). When I’m achy, I just take more (vit d) and that usually relieves the pain. A woman knows her body! i’m a strong believer in being your own advocate. congrats on both the diagnosis and working towards feeling ‘normal’ again.
Thanks so much for sharing your story. I also was diagnosed with hypothyroidism at the age of 29. Since I was thin and had a good diet and exercise regime my doctor was sure the results would be normal but nope! I’m on the opposite side of the spectrum from you as far as having children. My husband and I are trying but my hypothyroidism has messed with my hormones so much I now have PCOS and am having a really difficult time conceiving. Be thankful yours didn’t kick in until after you had your four beautiful children! But now that I’ve been on synthroid for a couple years now and I follow a Paleo diet and I can say that I do feel so much better and you will too! Keep positive and thanks again for sharing, it makes people like me not feel so alone. :)
Oops, I meant five (not four) beautiful children! :)
Great post! My story is very similar and I was diagnosed last year. It’s amazing how much better I feel after starting Snythroid meds. I suffered for years before a friend mentioned my symptoms sounded like hers and she is hypo. I think it’s so important to share this since it can affecting so many women, especially post-partum and so many doctors tend to write you off saying, “You’re a mom of small kids, of course your tired!” Thanks for sharing your story!
Thanks for sharing your story. I had this problem for six years without knowing why. I had my thyroid tested so many times and it always came back normal. I finally got a doctor who tested differently and was diagnosed with hypothyroidism. The medicine helped, but two years later I am still experiencing some symptoms. I recently found out that my vitamin b12 was low, so now I give myself weekly shots. It has helped as well, but I’m still not quite “back”. I appreciate all the comments here as well. It is nice to be able to help each other out.
I can completely relate to your post! I moved from NJ to Louisiana 3 1/2 years ago, and I have always felt a bit off. When I worked a full time job of 9 hrs a day, took care of an infant, house and husband I had more energy than I do now as a SAHM! Since moving, I realized I had been ignoring signs of depression which reared its ugly head within the first 6 months of moving. I was put on Lexapro. I was forever tired, joints hurting when I slept, my brain was foggy and I couldn’t remember anything anymore! I am a Virgo and have always been disgustingly organized! Since having my daughter I am a hot mess! lol! I eventually switched doctors and my new dr up’d the dosage to 20 mg’s. He has also run thyroid tests a few times and I have always come out “within normal limits”. He eventually just diagnosed me with Chronic Fatigue! WTH! Since the dosage increase of Lexapro I gained 15 lbs. Which was bizarre! I kept insisting something wasn’t right! I have always been psycho about my weight (mother 250lbs and her mother 300lbs). I eat right, I was training with a trainer at the gym and all they could say was I was doing something wrong! I didn’t change anything other than my meds! I was so upset I begged my dr. to let me take Adipex! I took it for 3 months and could only lose 5 lbs which I somehow gained right back! In January I stopped the Lexapro and in about 3 weeks my body shut down. Never realized how bad the depression was…So we went back to the dr. and changed to Pristiq. Then he also gave me an ADHD test and I scored a 64. If you score a 46 or higher you have ADHD. So in combination of the Pristiq and Vyvanse I have lost that 15 lbs. Recently I switched those meds again to Celexa and Adderall. But I am still fatigued, foggy and can’t focus. Although I have Thalasemia (i am always Anemic) I still believe there is something else going on. I am definitely going to have my dr. check for Vit. D after reading your post!
I hope things get better for you!
Wow – thanks for sharing. It took me awhile to get it right too. Not gonna lie, it is a long never ending road but with the right dose you will be ok. Takes more out of me to get half the work out results and that is discouraging but keep your chin up. Plus, you look great in all the pictures! :)
Thank you so much for this post. It’s really what I needed to hear. It has given me the courage to buck up and go see a specialist. I have been putting it off for fear of hearing “nothings wrong…you’re normal…it’s all in your head” once again. I still fear that those words will be the outcome but if that’s what I am told I’ll just try someone else. I have been feeling EXACTLY the way you have described and I know it’s not normal and I’m tired of being tired ALL the time and not myself. Once again thank you so much for this post it has helped me tremendously get the courage I need to make that call to see someone and I wish you well with dealing with this disease.
I’ve had Hashimotos for the last year and a half (triggered by the birth of my third child), but it was, thankfully, caught by my OB/GYN at my 6-week post-partum appointment. My biggest word of advice, now that you know what it is? Patience. It takes time to get things right. . . they will keep testing and adjusting until the levels even out. I’ve had a hard time finding a spectacular endocrinologist in Utah. Any chance you can recommend yours?
great post! So informative! I am sorry you are having to struggle with this! So glad that you were able to find a great doctor! It stinks that we have to weed through the bad ones first. I hope you find your balance quickly! I will pray for you!
Amy, thank you for sharing. I would love to know what doctor you went to see as I have had trouble finding one who doesn’t give me the same speech you received. Thank you.
I know exactly the way you feel. I was diagnosed on Oct 2008. And I also went to my doctor telling her that something just wasnt right. It wasn’t until I got a new doctor that he quickly diagnosed me. I’m glad that you were able to get a doctor to listen. There are many women that go untreated because their doctor never thinks to check their TSH.
So glad you were able to get answers. Nothing is more frustrating then not knowing. Thanks for sharing.
Wow, I’m so glad you shared your story! I have thought for YEARS that I have hypothyroidism, but my tests are always normal, so I assume it’s in my head. About 3 months ago I got so fed up with feeling like crap every day that I stopped eating gluten. I do feel better, but I still don’t feel great. I haven’t had gluten for 3 months and I really thought I’d be feeling like a million bucks by now. I still get headaches. I still am tired all the time. I still have brain fog. And even though I haven’t had a lick of flour for 3 months, I haven’t lost a single pound. Not even half a pound. How messed up is that?!
Well, you have now encouraged me to get back on the hypothyroidism bandwagon and see my doctor again. When you went to your final (nice) doctor, was he a specialist? I’m wondering if I should go see a different type of doctor instead of my OBGYN and my family doctor (who have done the testing for me in the past).
I’m really ready to not want to take a nap all the time and have to drink an energy drink just to get enough energy to force myself to do basic chores, errands, and stuff around here.
I have it too but was only diagnosed after years of gastro problems. I had a bone scan at 40 which said I had osteopenia. They started my on actonel but it didn’t get better so then I went to a gastroenterologist and he found a very large nodule on my thyroid and sent me to an endocrinologist. UGH. I basically had to diagnose myself. It wound up I have Celiac disease which affected everything from my thyroid and bones to my skin and teeth. I am glad you finally have an answer and that the meds will hep you get back on track. I am amazed that you trained and competed in a triathlon while dealing with all that! Thanks so much for your post! Blessings!
Thank you for posting this! Through your story and the comments I now have renewed energy to keep going and find out what is wrong. I have endometriosis and my Dr. wants to do a laproscopy for all my pain. But I have a feeling that it isn’t just the endo that is causing all my gastro and endocrine probs. Thanks for sharing!
There are SO many stories of people going to the doctor time after time and not being diagnosed! What I have learned via my experience is that tsh, t3 and t4 can be out of wack, causeing all manner of symptoms, without registering as low, on blood tests.
I began having health issues in 2009, newly graduated, working in my first teaching job. One day my period exploded and gushed and I was a mess. Unexpected, gross and embarrassing. From that month on, my periods were unpredictable and ugly.
I began being tired, extremely fatigued, muscle and joint pain. Carpal tunnel…so bad I had to have surgery on my hand, I couldn’t write *teaching jobs usually require it!*
Serious irritation, leaving little piles of emotional rubble around as I raged and then cried feeling so horrible for how I reacted to everything but having zero ability to change it.
The brain fog you describe I call wavy brain.
Added to those symptoms was serious tummy trouble from constipation to acid reflux, over the counter meds weren’t working to curb it. I was eating entire bottles of rolaids with no relief. Barium x rays and other investigative tests were done, inconclusive as to the cause of it, but diagnosed with excess stomach acid production.
Finally, in 2010, a swelling on my thyroid was noticed by my doctor. Turned out to be a tumor. Which turned out to be cancer.
Two surgeries later I have no thyroid….lemme tell ya, hypothyroidism symptoms when one has zero thyroid are nearly unbearable. gasping for air climbing one flight of stairs and muscles burning, tingling and stabbing with pain after walking less than a block. steady weight gain in spite of other efforts. Sad really.
Good news, all treatable YAY!
Thanks for sharing your story, reading it and all the responses to it has been such a boost for me. Feeling alone in the world is the worst feeling ever and this alleviates it
I didn’t realize
That’s great that you were finally able to get a diagnosis! I hope that you start feeling better soon! I started having chronic pain in January and it wasn’t until August that I finally found a doctor who took it seriously. One doctor told me just to “drink more water” as if that would fix everything. I tried managing the pain and praying that it would go away. The worst part was just not feeling like myself and not knowing what was wrong. I have been battling depression and anxiety all year and I have pretty much felt like the worst mom ever. I was referred to a specialist in October and she thinks that it might be endometriosis. Medication has helped some but the pain isn’t completely gone so I have to have exploratory surgery next week. It is the only way to confirm the diagnosis and make sure that we are following the right treatment plan. They may also have to do something surgically to relieve the remaining pain. There is still part of me is worried that they won’t find anything during the surgery and I will have to continue the search.
The most frustrating part of all of this was definitely having a doctor who only half-listened and didn’t take my pain seriously because the test she ran (which it turns out was completely unrelated to the actual problem that I am having) came back “normal”. Thanks for spreading the word and encouraging people to continue looking for answers even when a doctor says that everything is fine.
I know how you feel. I was diagnosed with hypothyroidism a few years ago as well. I still feel like the medicine isn’t really helping. Do you mind recommending your doctor? I was to go to an endocrinologist but a referral from someone I know would be great. It is hard to find the right balance. Finally knowing what is wrong is great, but it us just the start of getting thongs back on track. Thanks for sharing.
I can soooo relate to everything you are feeling and saying. TWO stinking years I’ve been on this path of trying to convince the Doctors that something is wrong and getting the same answer “you’re in your mid forties honey, things just happen”. Well it turns out I have Graves (which is hyperthyroid) but instead of being the normal losing massive weight…I get to be the 1 in 5 who gains weight! Lucky me. I’ve finally found a wonderful endocrinologist but they found a nodule on my thyroid and now I’ve just completed a few rounds with our lovely Nuclear Med department at the hospital. Results today and hopefully treatment starts soon!! Don’t worry…the hair thing was one of my biggest complaints. I guess it was always because my hairdressers talked about how “great” my hair was and all of a sudden it wasn’t so great! Hang in there and take care of yourself and hopefully feel better soon!
I’ve been dealing with the same thing for over 10 years. The most frustrating part for me is just the uneducated and lazy doctors. The quality of my life was affected for TEN years because they were too busy to look a little deeper. The “normal” range is so off too, and a lot of doctors are so uneducated about it. What’s amazing is starting on medicine and seeing the fog lift. It’s a whole new world.
Thanks for posting about this! I’ve had thyroid problems with three out of four of my pregnancies and haven’t been “bouncing” back this time either. In fact, I’ve GAINED forty pounds (which just makes me want to CRY to look at!). It’s really been awful. I’ve had them check my thyroid, but they keep saying it’s normal. Now I’m wondering if it’s really at the high end of normal. I was just diagnosed with vitamin d deficiency as well when they couldn’t explain away my depression issues and the fact that it wasn’t getting better with medication. Well, that’s helping, but I’m still wondering where my thyroid levels were at. I think you just gave me the push I need to call and find out exact numbers! THANK YOU!
I had a miscarriage two years ago and have had unexplained infertility ever since. I went to several different doctors…and they all told me everything was normal. It was SO frustrating. After doing some research, I really thought I had a thyroid issue. My mom has a thyroid problem, too, so it seemed possible. I went to my doctor and asked for a thyroid test. It came back normal. Ugh! Finally, I bit the bullet and my husband and I began seeing a specialist. The first thing they did was run a bunch of blood tests…including thyroid. It came back “normal.” BUT–it turns out the higher end of normal is not ideal for pregnancy. That pesky thyroid may be the source of all my problems. (Just as I suspected.) Be thankful that you got to have 5 kids before your thyroid went on the fritz. :)
Here’s to hoping my medication works so I can FINALLY have a family…and that yours works so you can feel like yourself again!
Thank you, thank you, thank you!!! I am going to make a doctors appointment today! I feel like you were giving a description of myself! I had my last (but not final) baby 18 months ago, stopped nursing 8 months ago, and I am just not right yet. I keep gaining weight. I eat healthy, I can’t eat any better. I tried working out and that didn’t make me feel any better but I quit because I just didn’t have enough energy to do my everyday things on top of working out. I have been to the doctor and they say I am “normal” too. My mom is CONSTANTLY telling me to get my thyroid checked, I do & it turns out normal. My dad is also hypothyroid. I am sure I also have a vitamin D deficiency, I live where winter stays for 6 months or more and when it’s cold it’s COLD (50 below is not unusual!). Do you take a RX vitamin for that or something OTC? Thank you for sharing, I hope things continue to get better for you!
My comment will sound a lot like so many of these, but hypothyroidism is a big part of my family’s life. My mother, grandmother, and two sisters also struggle with Hashimoto’s. I was diagnosed in 2000. I was a good girl and had my levels checked yearly and they never saw a reason to adjust my dose. I just assumed that they were the experts and my tiredness and weight gain had to do with having four kids in six years. Over a year ago someone mentioned something to me that started me researching my diagnosis and treatment and realizing that I still had all the symptoms–and I had been taking thyroid medications for 10 years, under a doctor’s supervision. I switched doctors and medication and am feeling better, though still not 100%. It has taken over a year to figure out the right amount to take.
I found one database on a thyroid website that lists doctors that sensitively deal with thyroid concerns. If you’re still trying to find a doctor to listen to you, try searching for such a database.
I have learned that you must demand the full set of thyroid blood tests (not just TSH or T3) and you want to make sure your doctor uses the most recent “normal” range information.
For me, the brain fog is one of the most annoying things–for a while I seriously thought I had early Alzheimer’s or something.
I hope you continue to feel better. Thank you for sharing your story regarding something many women struggle with, knowledgeably or not.
I have been to 2 different doctors I have the same symptoms but I have come back normal each time too! Who is the doctor maybe I need to make a special trip (yes I am willing) I have been suffering and I am so glad someone else is in the same boat
I completely relate to your story. My daughter was 4 mos old, but I figured my fatigue was due to my newborn. When my hair started falling out in big clumps was when I became worried. My doctor called and told me my thyroid results were very abnormal and I had hypothyroidism. Once my medication was regulated, I noticed a huge difference in my life. My attitude was better, I felt better, I remembered things. I don’t like that I have to take medication forever, but I know it’s very beneficial.
I am seriously brought to tears by reading this. I was diagnosed with Hypothyroidism in the 8th grade. Both of my parents have it. Which is unusual to have BOTH parents have it. I have taken medication every day since. However, Ever since I had my 3rd daughter I STILL REALLY experience ALL of these symptoms. The Fatigue, the Brain fog, the feeling cold, etc. My tsh levels continue to come back normal. I did have a SEVERE vitamin D deficiency and my mom has Osteopenia. I continue to live this fatigued and foggy life:( I have tried vitamins…I’m way too tired to exercise. I have a really great dr. I just want to feel good and have energy. I’ve fasted and prayed for it even. I too never napped before. Now I can fall asleep sitting up, riding in a car, or just about anywhere. I do have pretty bad allergies and irritable bowel syndrome (which I think might be caused by the constipation due to the hypothyroidism.) I’m also on an anti-anxiety medication (I think the anxiety may also be caused by the hypothyroidism.) I would really love to get some answers and more than that some ENERGY:) Thanks so much for sharing! Stay Fashionable! Love, Candy ps. I found the swollen face thing to be interesting. I’ve always thought that my face looks swollen and chubby in comparison to the size of my body. I wonder if it’s thyroid related too?
you’re really awesome for sharing this. so many people (i think moms especially) are brushed off by doctors. it’s true, eating right, getting exercise and rest, these are all good things, but you know when they’re not enough. you know when it’s something else. i’m really glad you found someone to really listen to you and thanks for sharing your story.
I also have hypothyroidism…have for quite a long time now. When I was diagnosed, I was not showing any real outward signs except for that my thyroid was slightly enlarged during a physical. It wasn’t until after having kids though that I would get a sense when my medicine might need to be adjusted. And then there was a week or two that I ran out of medicine…and I realized how bad it can get if I am not on it…I was so tired, almost depressed, didn’t feel like doing anything, had no desire to really be around my kids…finally I realized that it could be because I hadn’t taken my medicine and once I did again, I started feeling more like myself. So my advice to you is 1) always take your medicine! and 2) listen to your body…only you know how you feel! Good luck!!
Amy, I was recently diagnosed with hypothyroidism. I hadn’t been to a doctor about it as my family doctor had moved and I hadn’t found a new one. I actually went to my new doctor regarding some other issues (rheumatoid arthritis related) and she had me get a full blood test as it had been many years since I had been to the doctor. At my second appointment with her, she told me that my thyroid level as normal, but on the low (high?) side and I was low on Vit. D also. She said while most doctors wouldn’t do anything, she recommended that I start medication for it and I did. I immediately noticed that my energy level increased. I wake up in the morning for work and don’t feel like I immediately want to pull the covers back over my head (OK, some days I do, but not all!). Also, I don’t feel like I have hit the wall at 2 in the afternoon. Most of my brain fog seems to have gone and I just feel better about everything. Thank you for sharing what you went through. I was lucky to find a doctor who didn’t ignore other symptoms that I myself was ignoring. I hope you find the balance you are looking for. I, too, am working for balance.
I’m so glad you shared this. I’ve been wondering if I need to get my levels checked. I haven’t felt right since I had my last baby. I’m constantly exhausted and if I sit down in the middle of the day, I don’t have the energy to get back up. I’m easily irritated and it’s making me crazy! This is just what I needed to read, because I was beginning to think that I was crazy, thinking something was wrong with myself. Thank you.
Hi! I’m so happy you were persistent. I flat out told my doctors i had under-active thyroid but they ignored me bc I was still in the normal range. Finally my fertility doctor noticed I was on the high end of normal and did extra tests. Turns out I have Hashimoto’s disease. I was right all along! It took 5 doctors and 4 years before I was diagnosed. It also caused me to have a severe Vit D deficiency. You know your body better than anyone. Dont be afraid to be your own advocate!!!
Thanks for this post. I was diagnosed about 11 years ago, after I also had a baby! I went to a regular Dr. Nice. Got me on the regular thyroid medication. Felt better. Then after a few years they said I was to High!?? Lowered my medication. I never felt GOOD. I always still felt like you described. They kept taking my blood and saying “All Normal”. I never felt normal. I have always been VERY active. A friend told me to try a medication that was more natural. Armor. I felt some better. Then I couldnt get that kind of medication any more. AARRGGHH. This story is getting long so I will get to the good part. I finally went to a hormone Dr!!!!. (Hear the Angles singing here) He took ALL of my levels, not just the T3 or T4 whatever they limit you to. I was the second to the LOWEST levels in thyroid he had ever seen! I also had almost no Vit D, and Iron, Iodine, etc. I started on the new ALL NATURAL meds and what a difference. I look forward to things now and the future, instead of just wanting to sit on the couch or sleep. The regular Dr.’s for some reason dont get it. They kept telling me all was good. I kept telling them I was not. Thank heaven for Dr.s who take time to listed, and who take time to learn.
Kellie
I’m so glad you were able to discover what the issue was! Hopefully you will soon be back to your old self. I really enjoy your site and all the ideas you share.
Wow! What a crazy journey but I am so glad you got an answer–and found a doctor who actually seemed to care about what you were going through. Here’s to a better 2012 and a titch more balance. (Balance? What’s that?!?!? LOL)
I’ve been hypo for over twenty years, following Grave’s, and it was always a struggle while I was on Synthroid. I will never go back to synthetic again. Now I’m on desiccated natural thyroid (NP Thyroid by Acella) which contains all the things a normal thyroid would produce: T4, T3, T2, T1 and calcitonin. That change saved my life. Brought back “me”. Now, however, I’m struggling again trying to find that balance with my meds since MY 5th baby was born. This is hard thing to work through; much patience required. Keep us posted!
I understand! I’ve been going to various doctors since my first pregnancy (not the same symptoms as you though) and the doctors just keep telling me that there’s nothing wrong. It’s almost like a personal insult, I would like to think that I would be the one who would know when somethings not right.
Like every one else, thank you for sharing. I to had a long up hill climb to find anyone who would look at me as a whole person and really listen and help me get my life back. I am 52, and looking back I see that I struggled with Hypothyroidism for many years. I am the mother of 9, and after a very emotional time in my life, I went off the deep end, periods stopped, I cried all the time, I had no energy, my legs felt like lead. My brain fog was awful, I could not sleep. I gained 40 pounds with in a few months and then heart problems started. Two years and 3 doctors later I was diagnosed with Hashimotos. I have been on meds for 2 years and most days feel better and yet still not the 100 mph woman I was. This disease is very misunderstood and I really thought I was going crazy and I still long for the person I was before and yet am so thankful for where I have gotten too. These doctors need education, these symptoms are real and it is hard to work through. Thanks for sharing. Who knew that such a small butterfly shaped gland could control so much!!!
Hypothyroidism sounds like it is becoming very common! I have it too, but started with different symptoms. Doctors actually kept checking for anemia. And of course all my blood tests came back normal. But when my periods stopped, I had a doctor take a look at my thyroid since I didn’t have all of the typical thyroid symptoms. My mom has hypothyroidism too. Once you get the medication on track, it takes a while to really feel normal, and for your hair to stay where it is supposed to! The thyroid makes such a HUGE difference. With my second pregnancy right now, they monitor my thyroid like a hawk because it can cause pregnancy complications. Its just something you don’t mess with! Haha… Hang in there. You will feel FANTASTIC soon! Like a whole new woman!
This sounds so similiar to me! I don’t have the swollen neck, but have many of the same symptoms and couple others.
The fatigue is what does me in. I can seriously sleep 8-9 hours. Get up, be active for two hours, and go sleep another two hours, repeat. If I go work out, which I do to try and loose the weight, I have to come home and sleep for two hours so I can function. And it all started after number 4 was born…
I can tell by the patch on your hubby’s scout shirt that we live in the same area. (A little stalkerish no?) Would you send me an email and tell me what Doc you went to? So far my doc and his partner have told me the same thing for two years. My tests are all normal. You are getting older and you need to loose weight. Ummm…yeah. I’d love to find another Doc. who might offer a different solution. And maybe assure me it’s not all in my head.
Hi Amy, boy, I feel like I could have written your post. Lots of the same things. Except that my Dr. did follow the lower standards and put me on meds right away. He said the thyroid levels would continue to decline and I can expect that over the years, my meds will increase. I’ve had blood tests every 6 months to watch it closely and adjustments made as needed. I do feel better, most of the time. But is that thyroid or life? It’s hard to tell. I have lost some weight since it’s been adjusted (but not as much as I’d like:-). Glad you pushed until you got some help! Hang in there. I always tell myself, it could be worse!
Thank you for posting this. I have many of these symptoms but never realized they might be related. Some of them like the hair loss, I didn’t even think of as a symptom. I was treated for depression and when I talked with my doctor about the constant and unrelenting fatigue, his response was, “There’s no pill for tired.” I wasn’t asking for a pill. I just don’t want to feel beaten down all day every day.
I am going to insist on in depth tests.
Thank you so much.
I have hypothyroidism too. Although my levels have been “normal” for the past year (after four years of adjusting medication), and adding Vitamin D supplements, I’m still tired and overweight. Gah! I’m glad you’re starting to feel better though. I felt the same way you did when my doctor called me to tell me my test results. I felt relieved that I wasn’t being a hypochondriac and that I could tell my friends and family “HA! There IS something wrong with me!” when they all just thought I needed more sleep.
I dealt with doctors for 3 years who told me I was “normal” and just needed to exercise more and cute calories…the problem with that was I was already doing weight watchers and exercising 7 hours a week (hard)…and was still gaining. I changed doctors who tested me again and I when I fell in the “normal” range he ran some more tests and I was diagnosed with hypothyroid. They put me on meds and I was able to get pregnant within one month after 3 years of infertility and I dropped 30 pounds. If you doctor won’t listen…go to another and another and another until you find one that is at least willing to listen and try new things…it could change your life!
Amy, thank you so much for sharing this! It runs in my family too and I have been tested, but now I know not to just trust the ‘normal’ test result!
I hope you are back to feeling more like yourself soon!
Lorie
I’m so glad you were proactive and found the right doctor! What a diffeence that makes! I have the opposite problem, hyperthyroidism(Grave’s disease), but without the “thin” side effect~darn! Best wishes for feeling like yourself again SOON! It takes awhile to get the meds right.
My Endocrinologist had been watching a growing benign lump on my thyroid over the past few years. The entire thyroid was removed October 2010. Funny that I did not relate the hoarseness, fatigue, brain fog, headaches and all the other symptoms you mentioned. If fact, neither my gynecologist (who discovered the lump) nor the endocrinologist asked me about symptoms specifically. I really connected the symptoms to the thyroid problem MYSELF, and it was after the surgery! After only two testings to determine the dosage of the medicine, the endocrinologist released me. He did not tell me I needed to have the TSH done every six months. Upon visiting my GP (also internal medicine MD) this past June, he asked about the testing. We are STILL working on getting the meds regulated. I am still having all those symptoms and possibly even more. I just turned 60 and had related all of them to getting older. I did feel somewhat better when I started exercising, but it took every bit of energy I had to make myself go. It’s my understanding that a good range of thyroid hormone should be somewhere between 3-5. My last test reading was .04 waaaaaaaay below what it should be. I am awaiting my ‘balance’ and hope it comes soon. I babysit my 7 month old, 2 year old and 4 year old grandbabies. I NEED that energy back!
Yes Amy, I did come to this site for some crafting ideas and help. But I got a whole lot more and thank you for posting this health issue! I pray that you get your ‘balance’ on soon!
I can’t thank you enough for writing this post. I have the exact same symptoms (plus hot flashes–ugh!) and know something is wrong. I need to find a doctor that will listen and take time to help. I wish you lived nearby and I could see your doctor. I KNOW this is my thyroid. I will now seek out a doctor that will listen. Thank you for being open with your struggle and the help you have provided for so many of us.
Thanks for sharing. WOW, we could have been twins. I have not found a total resolution though and am wondering if you would consider sharing the name of your Dr. and where they are located. It’s sooo hard to find someone who will TRULY listen.
I too suffer from Postpartum hypothyroidism however for me it started during and especially after my first pregnancy, I was 22years and thought extreme fatigue and weight gain (despite being married to a personal trainer and working out HARD 4-5 days per week) were symptoms of night nursing. My mum noticed my throat but I put it down to the weight gain. Then when about three months pregnant with my second child I remember crying because my now 14month old first child woke at 7am and on that day I just didn’t think I would be able to get out of bed let alone care for a child. A few doctors, blood test, ultrasounds and biopsies later I am the sad owner of multiple thyroid nodules the largest measuring an inch in diameter. However I am still un-medicated due to my young age and the fact that pregnancy related hypothyroid conditions can resolve themselves (I am skeptical). I have subsequently been having annual biopsies quarterly blood test. I wish I knew what it felt like to be a normal mum with normal energy and a smaller butt (: but I guess you don’t get a say sometimes. Please keep us posted about how your treatments are going. Thanks
Amy, thank you so much for sharing this. Glad to know I’m not alone! I was diagnosed earlier this year after my period hadn’t started and pregnancy tests showed negative. I, too, had been feeling “off” and extremely tired all the time. Everyone I talked to chalked it up to “motherhood” and that that’s how it is being a new mom. Finally had a blood test and got a call at home from my doctor’s cell phone telling me to go pick up the prescription he called in for me. I was devastated, but I’m trying to get myself feeling better. I’m starting to feel a little “off” again though, so I guess I better get in & get tested again to adjust the dosage… sorry for the long story.
I hope you find your balance, and thanks again for sharing your story. Would love to hear any helpful tips you have.
Keep up the great work, you are so inspirational!
Thanks for sharing this. I think (as the previous comments indicate) SO MANY women deal with thyroid issues. Your story only proves that we are our own best advocates. Bravo to you for listening to your body and recognizing that something wasn’t right! I hope you’re feeling back to yourself very soon!!
I know not everyone reads the comments, but for some of you who are still suffering and/or have not found relief:
Keep in mind that synthetic drugs (Synthroid, Levoxyl) contain only T4. Your body has to be able to make the conversion from T4 to T3 in order for the hormone to work, and get to your cells. I do not convert, therefore I am on a drug that contains ALL the things a normal thyroid would create (T4, T3, T2, T1 and calcitonin). I used to be on Armour, now I’m on NP Thyroid by Acella.
Also, the two most important thyroid lab tests are the FREE T4 and the FREE T3 (usually called triionothyronine, free). The frees show the actual amount of hormone available to your body.
TSH is not a thyroid hormone, nut a pituitary hormone, and only tells a part of the story, but the FREES tell the rest of it. I you have a doctor who refuses to test your Frees, then he’s a doctor I would not waste my money on.
Best of health to everyone!
Kym….would a FREE T4 and/or a FREE T3 work if one does not have a thyroid??? My last result from the TSH was .015……..
I am glad that you finally were diagnosed. I was very lucky that I had a proactive doctor who knew that thyroid problems occur frequently in women as they age. I went to see my doctor just before turning 32 and getting married. She told me that she wanted to have blood taken for a routine thyroid test that she does on all female patients after they have turned 30. I came out hypothyroid amd was surprised as I had no symptoms, probably because I was just barely in the abnormal range. I was monitored throughout 2 pregnancies and my med adjusted during and after. I am very conscientious about having my levels checked every year or if my pharmacy changes drug manufacturers as diferent ones have different amount of the hormone in ther dosages. Keep on top of it! It’s very important as you get older! Good luck!
Amy- I had very similar symptons a few years ago and my endocrinologist ran a zillion tests – he initially thought I had Lupus or Rheumatoid Arthritis. Well, what I did end up testing positive for was pre-diabetes and severe vitamin D deficiencies. I got on meds that only messed up my stomach more and then during my last pregnancy I was hypo at one point then after a few months on meds went hyper…..so weird! Once my A1c levels were normal, I stopped my meds and just began focusing on my diet by eating more fresh than processed and less carbs. I feel like it’s still a roller-coaster, though, and am just sharing this because I can so relate. I think I will start taking vitamin D again after reading this. Thanks dear! On another note, I hope you survived the wicked wind storm. Yikes.
This post was well timed. And I even cried when I read it. Lame. HA! I’m currently going through the same thing. My GP dismissed me. My OB dismissed me. I made an appointment with an endocrinologist because I know MY body and things aren’t “right”.
Good luck with your hypo-road!
Thanks for your post. I too have hypothyroidism, but I have an awesome doctor. She found it, not me. I just figured I was approaching 30 and had had a baby and things were changing.
I am on Synthroid and I agree with the post about the generic not always working. Also, Good Earth has some over the counter supplements for your thyroid, but they are a little $$$$. I also have taken kelp drops in water to help.
One thing for me that makes a difference is plenty of water and no caffeine (easier said then done).
Wow! I felt like I was reading my own story. I have been on medicine for close to three years now and it has made a difference. I can tell if I haven’t had my Vitamin D. It makes a big difference in my mood. I hope everything starts getting better for you.
Thank you for sharing your story with us! We all think that all anyone wants to read/see is our accomplishments, but it’s nice to be able to see that bloggers are also real people with real lives, real stories, and real “problems.” Especially when it’s one the readers can relate to or gain knowledge from! Thank you for trusting us enough to show us that you are also not perfect. Praying that you’ll feel better soon.
Jen
I’m so glad you finally got some answers! As a nurse, I wish I could be an advocate for EVERY person who has a run in with a medical professional that denounces your symptoms as “just…(fill in the blank)” – I tell my patients – “you know what your normal is, and if you don’t feel right, you did the right thing coming in.” Hope it doesn’t take too long to balance your medication – and here’s a to a new year filled with more energy! I can’t wait to see how much more amazing you’ll be with a balance T3 level ;)
wow–what a journey! Hmmm, some of your symtoms sounds similar…I know this affects a lot of women, glad you have some answers. Amazing the difference two doctors could make!
Amy, thanks for sharing your story with all of us. I too have hypothyroidism and have had it for many years now. I also have Addison’s Disease and always thought that the symtons I was feeling was just part of the Addisons. Or at least that was what I kept telling myself. But it was the hair loss and the not having any energy that finally got me to see my doctor and sure enough it was hypothyroidism. I still have to have the blood tests every year to be sure the medication doses are correct, but it is nice to know that there are others our there with the same issues and being able to read them always makes me feel somewhat better. Thank you again for sharing your story.
Thanks for telling your story. I had a hysterectomy when I was 28 and have always had many of the symptoms of having hypothyroidism but get brushed off by doctors saying it is due to having the hysterectomy. At 37 I feel like I’m over 50. When I have tried to get better treatment for the hysterectomy they say I can’t take anything because of a blood clotting disorder. It is so frustrating to not have any answers and know that you don’t feel right. It is good to know that sometimes people find the right doctor to get the right treatment. It might be time for me to try out a new doctor again and try to get to some things figured out. Thanks for posting this and encouraging us to not give up.
Thanks Angel. Sorry to hear about your troubles. I know how frustrating that can be. Hope you can be guided to the proper care and treatment.
I just got back my thyroid results & they say normal, but I swear there is something going on. I live in Utah as well & was wondering who your doctor was. It is so frustrating being told that you are fine when you know that you are not. Thank you for sharing your story.
I just sent you the information! Hope it helps you find your answers too!
Amy, please share who your doctor is. I also have had similar symptoms as you and have thought it was hypothyroid but was told by my doctor that I was “normal”. It is so frustrating to know you are just not right and to have your doctor look at you like you are crazy! I live in Davis County and would love to go to a doctor that will listen and help! Thanks so much for sharing your story. It’s nice to know someone else is going through the same thing you are and that help is out there!
It is very frustrating. I just sent you an email with the doctor’s information. Hope you can find some answers!
Thanks for sharing your journey! This last September when I went for my yearly exam my doctor asked all these questions which I later learned were related to hypothyroidism. I knew I was “off” but didn’t think much about it. I’m on medication but not feeling a difference yet, but that’s part of my journey.
Here’s hoping for more balance in 2012 for all of us!
It’s amazing how long people can go on with these conditions and a doctor not be able to find it.
My fiance dropped out of Air Force basic training cause he felt so weak and literally could not physically do the exercises. All doctors told him there was nothing wrong with him for 4 years.
We knew something was wrong, the year before he was finally diagnosed with Grave’s Disease (Hyperthyroid) he literally couldn’t stand up from sitting down on his own. One day I went to help him out of his computer chair and his legs buckled and he couldn’t get up from the floor. By the time we got him to the ER that night he was having problems breathing. They had to transfer him to another hospital since the hospital we live near couldn’t figure out what was wrong with him. When we got there I was informed that his lungs and heart we both having a hard time working.
He ended up with a diagnosis of Grave’s Disease and a complication of low potassium (which was what was causing his muscle problems including lungs and heart). It was a very scary time for both of us.
Anyways my point is if anyone ever feels like there is something that wrong be persistent! We weren’t and it could have costed my fiance his life if we hadn’t made it to the ER that night. With both hyper and hypothyroid it is ridiculous how often it is not caught because the blood tests weren’t showing it the first time. Even his endocrinologist has mentioned that it happens quite often.
Thanks for the post. I can relate. I also live in Utah and wondered if I could get the name of your doctor. I have searched for one for many years. Thanks again.
Thank you so much for posting this. I have had similar symptoms as you (especially hair loss and DRY coarse hair). I went so far to see a dermatologist and an Endocrinologist but they did testing and said everything was normal too…not sure what to do either because I feel out of balance and know something is not quite right for a few years now. I think you live in UT? I am thinking of seeking a second opinion as well and I have IHC insurance. Would it be possible to get the name of this doctor sent to my email? Thanks so much
I’m so happy to read all the responses you are getting and I have to tell you that I find that there isn’t enough talk about Hypothyroidism anywhere.
Here in Iceland 1 out of every 5 women is diagnosed with hypothyroidism after childbirth.
It took 7 months and me printing out an article from the american endo group to convince my doctor that I had to have some blood work done fast.
I had to diagnose myself. Isn’t it just awfull?
Well, 3,5 years down the line, I’m doing better, but I still have some symptoms and I’m quite sure I always will have them.
But I’m alive and well, so it’s totally worth taking 2 little pills every day :D
First time visitor but clicked since I’ve had a hypothroid dx since 15. Do Not take the med around the same time as your daily vitamin — iron intake interferes with synthroid so do one in the morn and the other in evening. Also make sure you’re getting a Rx for the name brand – many docs know the generic is not made with a stable shelf life so only prescribe the name brand good luck!
I also noticed “symptoms” after my first baby. I never felt like I had returned to normal. I just assumed it was what parenthood was like and my husband is only home a few days a month so I though the two together were my problem. After I had my second baby 10 months ago things seemed to get really bad. I had my blood tested and the results were really bad but it was still hard to find a good doctor. Luckily I did but I drive 2 hours to see her and it is worth it. I started taking synthroid 6 months ago and am still trying to get the right dose but I have more good days than I used to. It is nice to know I am not alone in this and even though it takes time to get it worked out it is so worth it for the days where you feel like yourself again! Good Luck!
Sorry to jump on the “What’s-the-name-of-that -Utah-doctor?” bandwagon…..but I too would like to know. Please :)
Debbie
After my first (and only baby so far) I believe I actually went HYPERthyroid (though I never tested it) I could not sleep, my mind raced, I lost 15 lbs in a WEEK (AFTER what I lost in the hospital!). My breastfeeding began to hurt and no one understood why even after many many lactation consultations with various people. I cried and cried and finally gave up breast feeding.
Now, 2.5 years later, I had been feeling irritable, sleepy a lot, and depressed. Somehow my doctor knew to test my thyroid based on those symptoms. She tried to give me an antidepressant before the blood tests even came back, but I chose not to take it. I wanted to see if the thyroid would help it and it really did. It has been about six months for me.
Also you should know that a slow thyroid contributes to high cholesterol (which I had even at age 24 when I was a very good weight and eating well!) AND it severely affects fertility. My doctor told me that at my level of 12.6, I probably couldn’t even get pregnant. Any levels over 6 are associated with miscarriage and low IQ. My doctor said someone with hypothyroidism should ideally be between 1-2 if they want to get pregnant.
Just wanted to say a quick thanks to you for your post. As I read it a few weeks ago, it really resonated with me. I finally went to my doctor to chat about it a couple weeks back. I’m pretty lucky being an army wife, and the wife of a pa student, my doc was basically willing to run any test under the sun for me. Results: Hypothyroid, low iron, low vitamin d. No wonder your article seemed so familiar! The doc thinks the hypothyroid may just be a post partem thing (my youngest is 8 mos.) so he’s waiting on thyroid meds until I get retested in a month, but just getting on the iron and d is helping out to some degree already.
I honestly had just thought I was foggy and dragging all the time because I have 3 boys 4 and under! I never would have thought to get checked if it weren’t for your post. So many thanks!
hi, Amy. I met you at the CE conference in April. Wow, if we could have only somehow known we were going thru the same struggle! I actually was scheduled for tests 2 wks after conference. Like you after almost 3 yrs of feeling not myself and having test after test come back saying “normal” I finally found a great dr and got an answer. Mine is Hashimoto’s Disease which is an auto immune disease that destroys the thyroid. And like you I was so relieved when I finally just got an ANSWER, I cried the whole way home from the dr appt. I have been on medication since June and the first dosage level didn’t work but after an increase in Sept my levels are now down from 7 in May to 3.5 in Dec. I feel so much better and can’t even think about how bad I felt this time last yr without wanting to cry because as you said the one area I feel terrible that it effected was how I was able to be a Mother. Hopefully, the medicine will continue to help me get myself back and like you I keep telling my friends if you feel like something is not right, no matter how many “normal” results you get, keep searching because it is well worth the end result of finally feeling better! We have to take care of ourself before we can take care of anyone else. Thank you so much for sharing and I hope you have a great holiday and a blessed new year!
Hi Amy,
I am so glad that your wrote about hypothyroidism! I can relate to everything that you said about your experience. I was diagnosed with a hypothyroid this past August with a TSH level of 216!! I had no idea and was just screened during my normal yearly ob appointment. I had all of your symptoms and more but chalked it all up to getting older and being a busy mom of 3 young children. I have been on the medication for 6 months now and my levels have come down dramaticly and I feel MUCH better but I am still not in the normal range (which is frustrating because I want to get pregnant with #4). My advice to you is that is takes time and be patient but you are on your way to a healthier you! Make sure you take your meds a full hour before you eat or drink anything , besides water , and don’t take your multivitamin until 4 hours after you take your medication because it can interfere with absorbsion of the drug. I put a full glass of water next to my bed with my pill and if I get up in the middle of the night to go to the bathroom or get up with a kiddo, I take my pill. If I wake up in the morning and the water is empty, I know I took my pill and can eat breakfast with my family. I am so glad that you wrote this post. I think that thyroid problems are very common among women and many go undiagnosed. Thank you for talking about your experience and bringing awareness to other moms. I know you have helped out many others from sharing your story!
Wow, your story is amazing and thank you so much for sharing! My mouth dropped when I read all of your symptoms, even the larger face!! I have recently had blood tests done to see what is going on with me and my TSH level was 1.9, but not sure how low they consider low? I tried to find out on the website you shared, but was unsuccessful. Do you perhaps know what the levels are supposed to be? I also have low blood, iron dificiency (taking supplements now) and boarderline high blood sugar levels. I’ve been watching my sugar intake, but have noticed no difference in a couple of months. The low blood is a mystery to my Dr (my Mum suffers with the same issue)!
So I think on my next visit to my Dr’s I will have him check my T3 &T4 levels. Thank you so much!!
Ann
Gotta love the “getting older” diagnosis. I was diagnosed with hypothyroidism 10 years ago. I was blaming everything (and believe me when I say I had EVERY symptom) on postpartum issues after the birth of my first child. Nope, it was the thyroid. My first TSH score was around 250. The idiot doctor (in Utah) said I was normal enough when the score was down to 9. That’s still double what it should be. I got my hands on the next dose level up and started taking that (disclosure: my grandmother died and she took 100 mcg ever since the drug was invented, so I finished up her prescription and marched myself back to the doctor). I was retested again (third time in four months) and it was down to 4.something. That was still a little high for someone with low thyroid (proper level for us is .5 to 2.5, according to what I’ve read), but I accepted it. I now faithfully have it tested every year because it’s such a fine balance. When my level got to .2 on 112 mcg, I started having some of the same symptoms and some new ones. Result: I was getting too much thyroid. Believe me when I say you do not want to be hot flashing in your mid-thirties in the middle of a humid July, especially when the in-laws come for an unwanted visit. Nor do you want to be told that you’re going into menopause early. Levels are now normal again.
I was diagnosed with osteopenia this summer (gotta love my family’s wonky genes). So, now the battle begins with that problem as well. Hang in there. Aren’t you grateful for modern medicine to help these previously uncorrectable problems?
I suggest you have a doctor check your tpo antibodies. If you have them it means you have hashimoto’s thyroiditis which is linked with celiac’s . Cut all gluten out and no iodine in salt or vitamins if you have hashimoto’s. You will feel so much better in no time.
I hope your starting to feel better, i was diagnosed at 17 with hypo thyroid and i’m not 24 and still trying to figure out how to feel better and normal. finally found a doctor that would listen to me and not immediately tell me i was just depressed and wanted to put me on anti depressants. i would cry in frustration every time i left the drs office so frustrated because i wasn’t feeling good and i knew i wasn’t depressed. well finally found someone to listen and test my antibodies and found out i have hasimotos. anyways thanks for your post. hope your doing better.
I, too, cried when I read this. I am so tired of not getting help. I have so many of these symptoms and need a Dr. in UT. My mom has thyroid problems so I have suspected that might be my problem also, but I always show in the normal range when tested. Will you please email me your Dr.’s name? I am so happy for you and hope you are doing well.
I have some if the same symptoms you were having. It has been a year and I still feel sluggish and always tired. I saw a doctor and was completely ignored. I was wondering if your tongue had bite marks on the side of it ? Or if you tongue felt swollen? I am having a really difficult time finding a doctor. The recommended I see a ENT doctor for my tongue. My blood work came back normal, so he said. Any insight you can provide will be helpful.
I do not have any marks on the side of my tongue that I have noticed. But the symptoms of this are so wide and varied. I would make sure you find someone who will listen to you and ask to get the thyroid blood work tests along with the t3 and T4 blood tests. Many doctors will not go beyond the TSH test and mine was normal…even though I did truly have a thryoid problem. It was discovered with the T3 and T4 tests. Good Luck! Keep searching. You know your body best!
I have just happened upon your story and it is so similar to mine. Would you mind sending me the name and phone number of your Dr. as I live in Utah and would love to get some answers! Thank you.
Hi, I too have hypothyroid. Have had it for 30 years. Some ten years ago or so I found out I was allergic to synthroid when I requested to be changed to Armour. My hives that I had had for so long just suddenly stopped. Years later a Dr. put me back on a low dose of synthroid to supplement the Armour and poof I immediately began breaking out in hives.
I too live in Utah and would love to know the name of the Doctor you went to. I am in need of finding a Doctor to care for my thyroid as I am running out of meds and I just moved here last September so I do not have a doc yet.
Thank you for sharing your story. I did not go through this late in life. Mine started in middle school and that is not a good age to lose your hair and gain weight expenentially. I have struggled all my life with weight and brain fog. Sucks, but I find I am stronger for it.
Maybe we could start a hypothyroid support group here in Utah. Anyone up for that? I am in Utah County. If you are let me know.
[email protected]
I am so grateful to hear everyone’s comments. I have been taking a high dose of Synthroid for 9 years and feeling lousy! Time for a change!!! I am also here in Utah, would you mind sharing the name of your Doctor?
Sending you an email with the information Angie!
I was diagnosed through a biopsy with Celiac, then had a negative genetic test. Any gluten, even through cross contamination makes me incredibly sick. Before going off gluten, I craved it! I was diagnosed with hypothyroid and Graves 3 years prior. Low vitamin D, B, and iron due to inability to absorb nutrients (characteristic of Celiac). I wonder how many times these two conditions go hand in hand. I also have Fibromyalgia. It’s a which came first, the chicken or the egg sort of thing. Getting rid of sugar helps tremendously, as does adding certain supplements. Finding an endocrinologist is a good step in the right direction. A paleo diet will give you a lot of energy. Good luck and feel better.
Wow, I found your craft room today through Pinterest (gorgeous by the way), and then felt led to click through a little more and ended up on this page. For the past year I have been having the exact same symptoms (except the hair loss). I completely do not feel like myself. My doctor did test for hypothyroidism right away, but also came back normal. I, too, have not been happy with my dr, she told me she;d call with the results in 2 days, instead I got a letter 2 weeks later, after I called in several times. She then told me I was depressed (I’m not, never said I was, not sure why she keeps saying that). I’m debating switching doctors, but we live in a small town with not many, and I fear going to another and getting the same answer. Its reassuring to see that you continued on to another and got answers. Have meds helped then? Thank you for sharing!
I am so glad you found me! Yes!! Keep trying. I am not 100 percent yet, but I feel so much better. I have more energy and have not taken a nap (except for a rare occasion and a late night working) since I started on the meds. I can definitely tell when I have forgotten to take it. Keep going and hopefully you can get some answers and find a doctor who will listen to you. They try to medicate the symptoms instead of tackling the main problem and in my opinion that only increases your symptoms. Good Luck! Feel free to email me with any further questions.
As I was reading this article, I felt like I had wrote it! I have gone through a lot of the samethings. I feel so much better knowing I am not the only one won’t there that felt/feels like this!
Hope things are better for you now.
Oh my goodness. I thank God for this blog and your story. Is also mine. I have gotten all of the same symptoms, I am under tyroid meds also blood pressure. I have thr same freezing situations, your blog explains better to me than what the doctor said. She is a good doctor but when I started complaining about the bone achinh, my back freling like ot will split in half for ywo weeks, then it rill feel like if nothing ever jappened. My head foginess. Forgetfulness, dizinness sometimes, hair loss, inpatientness. Just pute madness then, the night sweats, lack of energy, everything, I thought I was alone in this world. I have to syary taking Vit D. That is for sure. Thamk you so much for this information. God bless you, and your family.
Hi. I was shocked to read your story. I too have the same problems(2 children less) but the same feelings. I however haven’t seen a specialist, just my regular doctor, but I’m on thyroid meds now. I’m sorry I can’t help you with anything, but wanted to share that reading your story sure helped me. Thank you for sharing. Now I will get to a doctor that knows more about it and hopefully I can be back to normal soon. My prayers are with you. Stay healthy and enjoy all 5 of your babies. Tyvm
Shannon- Thank you. Hope you find answers as well!
I too struggle with hypothyroidism and was blessed to find a doctor who has researched and understands the latest findings. Hypothyroidism is often a result of an overstressed adrenal gland. Once you treat your adrenal gland with diet and supplements, your thyroid is able to start healing too. You don’t have to be on medication for the rest of your life if you treat the underlying issue. I would highly recommend reading Adrenal Fatigue Syndrome by Dr. Lee. Good luck!
Rebecca- Thank you for the suggestion. I will look into that book.
I enjoyed reading your life with a hypothyroid, I have been suffering with my thyroid almost 32 years now. Somewhat like yourself I developed the problem after giving birth to my third child. I have tried different medications I did my best with Armor thyroid this was given to me when I first was diagnosed with having a problem. I then became pregnant with my forth child and my ob doctor changed it to Synthroid he felt due to the high dose of armor I was on would effect the baby. I have been struggling ever since. That was 28 years ago. I have tried different combinations of meds and I still don’t feel right. Is there any suggestion .
Wanda- Have you tried getting tested for allergies. I wonder if this could play a part in it. Sorry you are going through this. It is no fun!