diagnosed hypothyroid but think I'm hyperthyroid, doubled up my meds and feel great but doc says no

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Hi, I hope someone can give me some guidance.

I've been diagnosed with hypothyroidism (tsh 3rd generation =m 7.69) but my symptoms seem like hyperthyroid. My muscle mass is disappearing, I can't keep weight on, my hair constantly falls out, heart palpitations and total lack of energy most of the time. I've been taking 50mcg levothyroxin for more than 2 years and don't feel any better but my tsh levels are in the normal range now.

I've told this to my doctor and she says eat protein and exercise. I've eaten a lot of protein all my life and exercise more than most with no change in body muscle or weight.

So I decided to double up on the levothyroxin and see what would happen. It was amazing, I started putting on weight and felt energetic, better than I had felt in ages. I told my doctor this and she told me I could damage my heart and to stop doubling the dose. I then ask another doctor and he told me the same thing. Does anyone have any thoughts on this?

Thanks,

April

 

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12 Replies

  • Posted

    I wonder if you feel like hyperT, then double your levoT will make you more hyper? By the way, what has caused your hypo at the beginning (2 years ago)? What are your current blood test numbers?
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    • Posted

      I don't know what caused it.  I may have had it when I was in my 20''s and just didn't realize there was a problem.  I've always had a hard time keeping weight on but always looked like a weight lifter because I do so much physical activity - construction, hike, bike, exercise.... I can't seem to just sit down.

      It's just been the passed 2 to 3 years that my arms and thighs started looking like saggy 80 year old body parts.

      ?I will definitely get more blood test done - the only one I had done for thyroid was the TSH.

      Thanks Koa

       

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    • Posted

      Welcome, April. I am a new hyperT GD patient. So I don't have much experience but some curiosity and appreciation about other people's situation and helpful sharing. Very sure other more experienced and knowledgeable people on this board will soon chime in with good information that you can use. But most importantly, hang in there and have hope and do well. Best wishes for you.

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  • Posted

    April,

    ​the horrible thing about hyper hypothyroidism​ is that it affects everyone differently and testing is really only an indication. One labs numbers vary against another.

    ​When I was hyper thyroid I had your symptoms, then I took carbm.... and they improved till I got back to a range but generally I felt all over the place. A couple of years later I took the radioactive stuff and felt worse for months. They asked did I want a high dose or a low dose. I obviously said low, wrong answer.

    Today I am hypo and take the same stuff you take, having dropped almost everything from my diet except meat and veg I know feel fine. I go to the gym and am putting muscle on again and the fat is starting to disappear.

    ​If I were you I would get re-tested, you need to ask for T3, T4 and TSH. Then see an endo-chronologist. I think testing can be done privately its easier than bulling the doctor. Also I would suggest reading the Auto-immune protocol. Try dropping diet drinks and processed foods just in-case its just a nasty food allergy.

    Good luck and get a new doctor.

     

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    • Posted

      Bummer about what the radioactive stuff did to you - Glad you're ok now.

      ?I'll look into the Auto-immune protocol, though I've never put soda in my diet and eat very healthy.

      ?Will absolutely get a new doctor and get the other tests done.

      ?Thanks for your reply Alasdair.

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    • Posted

      April, I am pretty sure that when you dig into autoimmune diet protocol, you'll be greatly surprised by the protocol and your previous/current diet. I too was surprised and couldn't understand at the moment researching autoi protocol. For example, 100% whole wheat bread sounds very healthy for everyone, right? It's not and not allowed by autoi ptl because it contains lot of gluten -- for autoimmune patients, gluten is a toxin! Another example: your diet has to be gluten-free, dairy-free, nut-free, soy-free, egg-free, low low sugar, ... even potato, tomato, eggplant, all peppers (all nightshade plants) are harmful/toxic to autoimmune patients. What do you think now?  Is this a weird/crazy world? But don't see it like there leaves no food for us to eat... There are PLENTY and you will enjoy eating probably even more if you can find them and afford them (they cost much more sad   Sorry for babbling so much.

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    • Posted

      Ouch, I love my diary.  Warm milk at night stops the leg cramps and sour cream goes oh so well with everything.  But, if I can feel better the diet is definitely worth a try.  

      ​Thanks so much koa

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  • Posted

    Hi, as Alasdair80006 mentioned, it is important to get FT4 and FT3 tested in addition to TSH. That is because some patients have problems absorbing Levothyroxine via their digestive system and/or converting T4 to T3.
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    • Posted

      Interesting about the Levothyroxine not getting absorbed properly - Maybe that's what's going on with me.

      ?I will get FT4 and FT3 tested along with another TSH., find another doctor and mention all the helpful information that you are gave me.

      ?Thank you DanR

       

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  • Posted

    Hello all, 

    I was recently diagnosed with hyperthyroidism. I took an ultrasound of my thyroid and it was found multinodular groiter. So now I have to f/u with an endocrinologist and radiology. Fingers crossed. Been taking methiazole 10mg and was also prescribed a beta blocker. I have recently started drinking 2x day natural juice (kale, spinach, lemon with the Rhine, ginger, cucumber, turmeric powder, and carrots) to help aid with the symptoms of hyperthyroidism. I also take half of my dosage probably not as effective but when a dr themselves states they don't recommend being on the pill too long because of the "damage" it can do I'll just take my chances. I also take a plant based vitamin D and omega 3 pill. I also found lemon balm liquid drops that I add to chamomile tea 2x day. I would love for any advice. I have also lost weight initially I was working out stopped and still was losing weight didn't know why until I felt so bad and went to ER and was diagnosed. Thanks hyperthyroidism community. 

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  • Posted

    I also have been greatly suffering from anxiety and depression so if anyone has any ideas or recommendations for help I'm all ears. Thanks ??

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    • Posted

      Nikii,  Sounds like hyperthyroidism, but probably need making sure if it came from an autoimmune disorder (thus Graves disease) or just from hot nodules. I see you already enter some herbal and dietary remedies that could help on the autoimmune side. Maybe you are diagnosed with GD, then it's all good (herb and diet). By the way, your symptoms sound more like GD-autoimmune especially anxiety and depression. Let us know what your doctors say about the nodules. Take care.

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