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EndocrineWeb Community Advice

Hi there -

I was hyperthyroid most of my life and did not know it. A general md finally picked up on it in my mid 30's and sent me to an endo. He first said my anxiety was probably "just a personality thing", but then started getting my test results and realized I was indeed hyperthyroid. Anyway he immediately recommended I get it radiated to kill my thyroid off. I resisted that for about a year, he put me on meds that made me feel awful (methomiamizole?) and kept scaring me, telling me my heart was going to explode etc. etc. until I finally relented. God I wish I never had walked into his office. Your thyroid, is everything. It controls your digestion, your mood, your body temperature, heart rate, oil production...just everything. So now without it for many years my hair falls out (I used to have lovely thick hair and now in my mid 40's am worried about bald patches), my skin so dry it cracks and bleeds, freezing cold all the time, cannot go to the bathroom, mood is terrible, horrible migraines making it impossible to function...Every. Single. Symptom. I was so sick I lost my good job finally after years of battling my endo telling them I thought the levothyroxine was causing problems for me. I would get up to the range he wanted in dose but would get migraines to the point of not being able to function for days on end, and back off the meds only to have my system of course begin shutting down. So I'd get relief from the migraines but then slow down like a sloth and be hit with all the other symptoms. Losing my job was probably a blessing because it forced me without health insurance to go on the natural stuff, and finally start feeling a little better. The endos would never put me on natural they both (I got a second endo opinion) were so rigidly adherent to the drug companies they listened to me over and over literally begging for help but just kept going along changing my dose, giving me non generic instead, trying the one without the dye...but never natural. The industry is fixed. The doctors are all brainwashed. And the symptoms of hypothyroid on paper may seem like nothing to you, but please for your own sake really take the time to consider the road ahead. If you choose to go hypo instead of hyper, you will be on medication every day for the rest of your life. Those symptoms are HELL in reality. I used to be able to eat whatever I wanted and maintain my weight, or drop a few pounds just by lightening up a bit. Now I have gained 100 lbs. am obese and dim prospects of getting it off because my energy level is so low. I found a natural cow thyroid pill that worked only to have the price raised to the point I cannot afford it and the saga starts all over. Really, it was so much better being hyper. I had the occasional heart palpitation but, it was not so bad or I believe life threatening in comparison to what I have been enduring since the radiation. You can slow down so much you run the danger of going into a coma being hypothyroid. I'd trade back for the being fit and occasional heart palp any day. I urge anyone who is considering removing or radiating their thyroid to really consider the other options and educate yourself. Do not just blindly trust your doctor. My endo is the top in my area, well respected and known to all the md's here, and he did this to me. Oh, did I mention I also lost my baby probably in part to this? Yep. MAJOR LIFE CONSEQUENCES, PEOPLE. learn from me, or don't - but educate yourself. Go over to the hypothyroid posts and look at how many people are suffering for years not knowing what is wrong, their doctors and endos telling them everything is fine and refusing to hear them or help. Good luck.

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Hi Dresden. I wanted to ask when you were hyper (because I was just diagnosed) did the methimazole make u feel bad? If so, in what ways? Also did you gain weight while being treated on methimazole? So glad I found ur post because I was contemplating other options as I read online hyper can kill your heart I wanted to know about the RAI, etc. Thanks in advance.

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Hi Dresden: I want to, first, express my sincere sympathy for all you've struggled with. In many ways, I am much more fortunate, yet I am also struggling and worrying about the choices I have been forced to make. I was found to have a suppressed TSH this past February during a routine physical and my very good internist was shocked to find that my T3 and T4 were well within normal ranges and that I was without the normal hyperthyroid symptoms one would expect, though my elevated anti-thyroid antibodies supported a diagnosis of subclinical Graves disease. I figured that I had some time, being asymptomatic, and went to a naturopathic physician to try to figure out how to treat the immune system malfunction before the mainstream mds destroyed my thyroid. The ND found evidence in lab work of an intestinal infection, put me on antimicrobial herbs and oils for a couple months and actually got my anti-thyroid antibodies down to normal over the course of the year, but my TSH never came above seriously depressed levels. I did begin to experience some heat sensitivity as the year went on and started to experience some heart palpitations. When I finally gave in to my husbands nagging and went to an endocrinologist, she poo-pooed my concerns about methimazole possibly overshooting and making me hypothyroid. I took the low dose (5 mg) and sure enough, was hypothyroid within 3 weeks! I stopped it. At that same time, she did lab tests that showed me to have primary hyperparathyroidism and so require surgery to remove one or more benign adenomas. OK, that explained the palpitations despite being temporarily hypothyroid and I made the arrangements in September. Then, while waiting for a consult, she sent me for an ultrasound scan that identified a "highly suspicious nodule" that a fna biopsy showed to contain papillary carcinoma cells. I got this news the day before Thanksgiving. What a year! Now I'm facing losing my thyroid as well!
I got a couple surgeons who specialize in each procedure to work together so I only have to have a single surgery in February. The thyroid cancer guy says he'll do a partial and leave me part of the thyroid if he doesn't find growth out of the thyroid or in the lymph nodes. I am a nervous wreck because I know that what you are saying is real! I have a PhD in medical physiology and KNOW how important the thyroid gland is to homeostasis! They lie when they tell unsuspecting patients how lucky we are to have this type of cancer and that all we'll have to do is take a pill for the rest of our lives! I'm working, now, on calming down and planning on the worst case scenario, hoping against hope for a PT, but trying to get myself ready for a TT. I've been alternating fasting and keto eating to get my weight down before the surgery and have lost 15 lbs quite easily! (Check out Dr. Ken Berry and his advice on Youtube!) I've also given up sugar, grains, dairy and eggs for the last 2 months in an effort to starve the cancer cells of glucose and keep them from spreading. Finally, I'm interviewing endocrinologist, like crazy, trying to find one who will not treat me as you've been treated! Chin up darling. You're not alone. We'll beat this garbage! Wishing you the best...pray for me!

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Deciding on the Hypothyroidism part isnt really what caused it. I'm Hypothyroid and was still suffering on levothyroxine. All it took was to go on combination therapy and take Armour Thyroid and all of my symptoms are gone. I'm so very sorry this all happen to you. The cow thyroid is not the most natural for us. Try Armour Thyroid and you may fin you feel so much better It's worth a try. A nurse of 19 yrs.
Heather Rae Downey

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