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I am a 50 or so year old woman who at 43 was told I had cardiomyopathy (that is when your heart muscle is weakened due to an underlying cause they did not know). I was told when they admitted me to the hospital in heart failure that it was due to my thyroid, then they came later and said no that was not the reason. That was all I heard about a thyroid. I did not even know what a thyroid was at that time. That was in 1998. In about 2000 I began having symptoms of heat intolerence and shaky hands and getting really sick when ever I overheated a little. I made hospital trips where they told me I was in menapause, I was having anxiety attacks and everything else they could think of. Finally my sister took me to her doctor she worked for and he told me to have a test for thyroid and that was the begining for me of a pure hell. I have been on Methamazole for six to seven years now and the doctor is still trying to wean me off of these meds and I keep going hyperthyroid. So I will have two good months then he drops the dosage down and my hell begins. This time my tsh went so low 0.13 and I have been litterely in my house for seven weeks (and when I tried to drive I needed an ambulance), had a throat infection, an inner ear infection and every other infection you can think of. I have just come back from geting a CBC blood test. He finally figured out maybe my white blood count may be messed up. I had to pull off the highway a couple weeks ago and call an ambulance to come get me that I got so bad my whole body went into a shaking fit and I couldn't breath right, ready to throw up, I thought I was having a heart attack. Then they tell me it is anxiety after I told them I have graves disease and am hyperthyroid. I am going to go to Philadelphia University Of Pennsylvania Hospital for a second opinion but cannot get into there untill January. I have been through the ringer and back with this thyroid adn just cannot live a normal life no matter what I do. This has affected every part of my life. I went back to school at 47 and got my Associates Degree and I am now a Paralegal but after working in a law office for 2 years I had to quit because of my throid sending me to the hospital and affecting my vision to even work on a computer. This is a big disability worse then my heart problem I fear my heart will get worse because of this thyroid. I hope to talk to someone else who has same problem. I am currently debating RAI but I am afraid I will get thyroid storm or bulgy eyes afterwards. I will decide after my trip to Philly Hospital when I get a second opinion,. I have been reading horror stories about this RAI. Would like to hear from some people who have had it done. Thank you so much for listening. This is my first time on the forum.

Hi. Have you checked out this yahoo group: graves_support@yahoogroups? I've been off for close to a year but when I was last there it was the best support group I've ever been on for medical issues.
Here are some questions:
- are you aware of your T's? That you refer to just TSH after all these years worries me.
- What dose were you started at? Did you split it in half, or preferably thirds (yes, even for MMI)? When your dr. decreased your dose, was it a gradual or dramatic reduction? I put together an FAQ for hypER people that's on a bellaonline link. I'm not a dr. I can't say my answers are perfect but educated laypeople who've seen it, and one medical researcher, say it's pretty good. I think the questions are really comprehensive. I'm pretty sure I give a thumbnail sketch for how ATDs should best be administered.
- do you have copies of your labs? Really important. If and when you join the graves group that should be the first question you'll be asked.

Yeah, there are RAI horror stories. And I have to be honest. Some people do do ok after RAI. But no one should entertain having RAI unless
- they get a fair trial on ATDs
- they understand fully how thyroid replacement works and how their dr should monitor them. This education process takes time.
- they need to feel confident their dr. will give them optimal thyroid replacement treatment and monitoring. If a dr. doesn't know what s/he's doing with ATDs, you have to do some real investigation to be sure s/he knows what s/he's doing with thyroid replacement.

If I can help you further, please don't hesitate.
Take care,, Fayge (on methimazole for 14 months, off - that is, in remission, with an intact, functioning thyroid - for over 6 years)

I was diagnosed hypothyroid in summer of 2006. I had been very depressed and was sleeping up to 14 hours a day. I never felt "well" and I never had any energy even though I was a professional athlete from 2000-2005 and a small business owner! Imagine how frustrating that was! Something inside me kept telling me something was wrong, but it happened so gradually. Kept telling myself to "get over it and get to the gym". I would drag myself to the gym, but never got the normal burst of good feelings you get after a work- out. I just kept getting more and more tired! Friends and family were worried. I started to isolate myself. I didn't want to go out at all! I even had a hard time keeping in a simple conversation. My mind would just start to wander. It was terrible! My business was suffering because my ambition was being sucked away. I retired from athletics. No real motivation at all.
I didn't admit to anyone how I was really feeling because in my mind, I had some kind of mental "flaw"... was embarrasing... and I never like to hear myself complain!
Told myself it was probably normal aging and maybe I just didn't want to age, maybe I needed Prozac, etc... I didn't want to go to a psychologist because I didn't have anything to complain about! What would I say? "I'm depressed and tired because I'm depressed and tired?"
It wasn't normal! Friends my age were not having the problems I was having!
After really looking around and into the mirror, I knew I had to do something for myself... My hair was falling out, and my skin was starting to look terrible...... I thought maybe I was going through an early menopause. I went to my gyno. She sent me to the lab for estrogen tests and assured me it wasn't menopause. I went to two dermatologists and they said hair loss and skin problems were normal for someone my age (38) not to worry..(I knew they were not normal for me) One did a blood test for iron ... I was deficient so he suggested iron supplements... Fine, but no real help. I took the supplements and kept waiting to get better. It didn't happen!
Finally, I got myself to the endocrinologist for a complete blood test. Finally! The diagnosis! Hypothyroid!!! I started taking Synthroid and immediately felt better! I started having energy again! I feel I can accomplish things again! (Before, I wanted a nap after taking a shower.... Seriously!)
Functioning at an extremely high level now!
I even started a new business! I never thought I would have the energy to do that. Now, I wake up early, can work at both of my businesses , have the energy to go to the gym and actually enjoy my boyfriend and socializing. I am a totally different person. All I have to do is take a pill every morning. No big deal. I know there are women who want to say Synthroid didn't help them, but I can honestly say it improved my life 100%. Relief was within the first two weeks.
My hair has started growing back (took a year to even notice the regrowth) but it has changed color (lighter) and texture (kind of curly... weird for me). .. My endocrinologist said hair issues are normal with Synthroid and thyroid in general. My skin hasn't improved too much , but the trade off of energy is what matters. I would never want to go back to feeling like I did!
All women should get their thyroids checked regularly!

No woman should have to suffer in silence the way I did. Now, I wonder if my mother was hypothyroid because she had all the symptoms for YEARS. She passed away from breast cancer in 2003, so I can't tell her now. The lack of information out there when so many are suffering makes me angry.
I never knew how common it was. I never thought I would have a thyroid disorder and now I still cringe when I think of my "lost" years. I wish I had been educated! When I look back, I think of how much business I could have had if I had the energy I have now. How much productivity, fun, money, days were lost. It's sad, but I can only control the future and I am just very thankful that I found the right "cure" for my problem. I pray every day for women who haven't!
If your instinct tells you something is wrong, it probably is!
Hypothyroid is sneaky, but devastating! Get your thyroid checked!

I was diagnosed with Hasimotos but no doctor will treat me because my TSH tests are slightly elevated not high. Anyway, I have heavy periods, severe anemia, fatigue, hair loss, weight gain, etc. The Atkins diet helped greatly but any carbs keep me bloated and tired. Anhy suggestions on doctors in the Maryland area?

Hi Nancy. Do you have tests other than TSH? You really need to have a complete thyroid panel. That means the hormones T3 and T4 best tested as Free T3 and Free T4. (If you get hassled about that, check out Elaine Moore's articles on suite101. She explains why for women, the free rather than total number is important.

Like I said earlier in this thread, doctors should NEVER go by TSH alone. To compound the injurious practice of going by TSH alone many doctors will go by the old ranges for TSH, ignoring the fact that their own professional organ, the American Academy of Clinical Endocrinologists, has revised the numbers. (Check it out on www.aace.org .)

Some great and reliable books are Thyroid Power by the Shameses and Living Well with Hypothryoidism by Mary Shomon. (Mary has done great things for hypo people; unfortunately the hyper "community" has issues with her hyper book.)
Good luck!

P.S. Elaine Moore, who I mentioned previously, is the Mary Shomon for hyper people. She did have RAI and is now hypo, and regrets it thoroughly and has generously shared her experiences and knowledge.

My story started at age 39, in early 2003, when I crashed into severe symptoms of thyroid disease and had no idea what it was. Mine followed a severe period of stress, which according to many patient testimonials and research articles, can be a trigger for underlying thyroid disease to surface.
I visited a doctor who was filling in for my regular doctor and she diagnosed me with Generalized Anxiety Disorder and prescribed me an antidepressant, an anti-anxiety medication and a beta-blocker to control my adrenaline surges. My symptoms were; fatigue, post exertion malaise, brain fog, very dry skin, anxiety, depression, severe sweating, weight loss (rapid & temporary), joint aches and my hair was starting to break off in small amounts. The symptoms scared me out of my wits! I knew beyond a doubt there, was more than emotions going on, so I demanded a blood draw and asked for my thyroid hormones, glucose and blood counts to be tested. I had the blood drawn before I started the antidepressant that was prescribed. The Hospital lost my lab results for a month and didn't bother to tell me and when I called about them, they said everything looked great and not to worry about it.
My own doctor who was gone at the time I went to the fill-in doctor, returned and was just about to leave again, to go to a foreign country to become a missionary doctor. Just before he left, he was able to locate my lab results and wrote a review letter. His first sentence said: "Your lab tests indicate you are low on thyroid hormone". He also pointed out that I was borderline diabetic. The hospital staff who said my tests were normal made me realize you cannot take the word of someone other than a Doctor and you need to see all of your own lab results (get copies).
My TSH on the lab results, was elevated at "8.3" (range 0.4 to 4.5) and my T-3 Uptake (not a great test but more useful when added to other diagnostic tests) was several points below normal. I followed up with tests that revealed my hypo to be caused by Hashimoto's thyroiditis. My TG antibodies were at "537" (normal range <40) and my TPO antibodies were "120" (normal range <35). I also found out through other testing that my cortisol levels were low (adrenal fatigue) but an ACTH Stimulation test ruled out true (full blown) adrenal insufficiency.
I was started on Synthroid in 2003 and switched to Armour Thyroid in 2004. My doctor who switched me thought I might be one of the rare cases of "inadequate T-4 to T-3 conversion" but actually I was under dosed on Synthroid. Regardless, I do well on Armour and now take 2.5 grains (150mg). I also take vitamins and supplements that help the adrenal fatigue that can flare up when I'm physically overactive or experience high levels or prolonged stress.
I was also diagnosed with Non-alcoholic Fatty Liver Disease, caused by Metabolic Syndrome (insulin resistance type condition). I'm working on weight loss and improved diet, to avoid diabetes or worsening of the fatty liver. An important aspect of my treatment for everything is lifestyle changes (e.i healthy diet, exercise, stress control and healthy supplements).

Hi all.

I was diagnosed with Hashimoto's in December when my body went crazy after a brush with poison ivy... The allergist diagnosed it and now I can't get anyone to treat it.

My levels swing back and forth wildly (I know this because in December everything was on the Hypo end of normal, and last week every thing was on the Hyper end of normal... Plus I'm having weight swings -- gain 50, lose 20, gain 30, lose 50.) I've got all the classic symptoms -- hair loss, vision changes, fatigue, aches and pains, I can't think of anymore... Oh, brain fog?

I've been to 2 Endo's now... The first said my symptoms couldn't possibly be from the thyroid -- that they were all sleep apnea (had the sleep study, don't have the apnea) and the second actually did an ultrasound -- found 2 parathyroid enlargements -- but since there was nothing on the CT scan, has decided I'm really ok.

It can be so frustrating!!

Hope we all get our symptoms under control soon!!

Hi Cindy,

Thanks so much for sharing your story and was great to meet another fellow Editor!
You are so right about the frustration aspect because thyroid patients express it often, especially those who are told they cannot be having symptoms until their thyroid hormones are outside of the normal range. This goes against medical research that clearly points out the fact that the "thyroid antibodies" causing Hashimoto's (most common cause of hypothyroidism), can cause symptoms of hypothyroidism, apart from hormone levels.
It also sounds like from your story, that you are experiencing the wide swings in weight from phashing between borderline hypothyroid and hyperthyroid. This can be from flares of thyroiditis but can also be from a patient having "TSI" antibodies, along with those that typically cause autoimmune hypothyroidism (TPO & TG Antibodies). The TSI ones are what typically cause Grave's Disease but in Hashimoto's patients, can result in spells of "Hashitoxicosis" (phasing from hypo to temporary hyper).
I didn't look at the polls I have up right now, to see if you added your vote to them but I list "brain fog" as one of the troublesome symptoms we can experience. I'm also about to write an article specifically on that symptom-subject.
Here are a couple of links to ones I wrote in regard to thyroid antibodies contributing to symptoms:

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Hello, I am new here. My name is Stacie, I am 39, and I live in Orange County. My "fun" started a couple of years ago when I knew something in my body had gone haywire. I just felt way too tired for my age. Then the nausea and headaches & heat intolerance started. I also had major brain fog and mood swings and was put on an anti depressant for the first time in my life. I also saw a rheumatologist for horrible body aches that felt like bruises and was diagnosed w/Fibro. He gave me Lyrica, which I decided NOT to take as I truly felt the pain was due to my thyroid levels being so whacky. I was told repeatedly my thyroid was "normal". It wasn't until I became a medical detective that I realized I needed to have my thyroid antibodies tested! My ANA results came back high, as did my TPO. I was finally taken seriously. Then, the docs gave me a scare and started doing all the Lupus labs on me. One endo. MISdiagnosed me w/Lupus and APS!! I looked at my labs myself, and saw that they were NEGATIVE! The correct diagnosis was Hashimotos, and more recently, Graves disease. I also have PCOS (Polycystic Ovary Syndrome) or Insulin resistance, which puts me at risk for diabetes..... that, I am trying to avoid. I have been divorced for 11 years, and have a 13 year old, so I have been on this long journey alone and it's not been so fun! I am feeling better than I have in a long time. I have been taking PTU and Atenolol for Graves for about four weeks now, and my labs have shown a normal free T4 (it was elevated before) but my TSH is still supressed at 0.01.

Stacierae,

Wow, what a great testimonial that demonstrates the need for antibody testing!
Some of the first articles I began writing on thyroid subjects in 2005-2006, I addressed the "thyroid antibodies" connection to symptoms, apart from hormone levels. Unfortunately, many doctors don't believe symptoms can occur, despite there being many medical research articles that contradict this belief.
Many conclusion even on the PubMed (National Institutes of Health/NLM) and other reputable medical research sites state that thyroid antibodies (the TPO ones more often cited) can cause symptoms "pre" thyroid hormone imbalance.
Here are examples:

"Conclusion: The most frequent thyroid functional disorder found in fibromyalgia women was SCHT {sub-clinical hypothyroidism}, more than in healthy population. Presence of TPO antibodies was the most frequent related to this disfunction."
References: (1)Cooper D.S.(2001)Subclinical Hypothyroidism. N Engl J Med 45:260-264 (New England Journal of Medicine)

"Conclusion. Our results suggest an association between FM {fibromyalgia} and thyroid autoimmunity."
Ref: J Rheumatol 2004;31:2036-40 (Journal of Rheumatology)

Being tested for thyroid autoimmunity (antibodies) is so important in patients with thyroid type symptoms and fibromyalgia because the disease can be present and causing inflammation in the body, far in advance of hormones falling outside of normal values!