So when will I feel well? It's been 3 years now since my radioiodine treatment and I want my health

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I'm 61, male, and inherited the family tendency to Graves' disease which was diagnosed in 1999, though I suspect I had had flare ups previously.  I was energetic, successful and outgoing, and controlled occasional problems since diagnosis with Carbimazole.  Life was not too bad. Now, following radioiodine treatment in 2011, I can hardly get out of bed and life is a struggle.

My symptoms reached a new level of severity and I agreed to treatment with radioiodine in 2011.  It appeared not to have worked and I was left to myself over the summer, when it unexpectedly  kicked and in eventually did its job , but I became severely hypothyroid in the absence of adequate monitoring.  I eventually started thyroxine replacement and my thyroid hormone levels became normal within a few months, though I was left with a 15kg weight and symptoms of fatigue, poor memory, etc which persist.  My thyroid hormone levels suggest I should be in good health, but I still feel dreadful; lacking energy, poor concentration and slower thinking and speech.  I have no other health problems that I am aware of and have a regular annual medical to keep on top of things.  My doctors are no good at all and just put my symptoms down to age, which is curious as my 83 year year old mother had her thyroid removed surgically in 1975 and has taken thyroxine ever since. She is full of beans.

Any advice as to supplements or foods that might help me get back to good health would be appreciated.  I eat like a sparrow and avoid bread, flour, rice, potatoes, sugar, salt, preserved meats, soft drinks, dairy products, alcohol, cakes, biscuits and puddings yet I still look like the Michelin Man. My lifestyle is moderately active, though I am able to do much less now because of fatigue. Sleep etc is quite good. I take 200 mcg of Eltroxin daily and supplement that with another 100 mcg 3 times a week which is what I need to keep my levels normal. Has anyone tried natural dehydrated thyroid hormones?

It seems that the radioiodine treatment is the important variable between my mother's reaction to replacement thyroxine and my own.  Any ideas about that?

The information available online seems to be mostly for people with 'natural' hypothyroidism who want to rev up their thyroid function, which is intact if a bit sluggish.  Any idea about good sources of information for people whose thyroid function has been chemically terminated? 

I would never recommend radioiodine treatment to anyone.  I have not had a day of wellness since treatement and might have given up if I did not have a loving and supportive partner. I was better off with Graves' disease.

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4 Replies

  • Posted

    Thank you for sharing your story and your recommendation of not going to RAI.

    I was desperate when I knew I am allergic to the medication, because of RAI and surgery will be the next. If the doctor think age is the reason you can't do well now, that means the younger the better to do RAI and surgery, because the body is easier to adjust. I am over 50, so.....

    but why cann't you eat more meat. To make sure I won't loss weight again, I eat chick meat every meal and maybe 7to 8 meals a day.

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  • Posted

    Hi

    Sorry to hear of your troubles.  I've had Graves for about 8 years & am still battling on having refused RAI & surgery.

    Not sure I can suggest anything to help, maybe have a look at Stop the Thyroid Madness website, lots if really useful info on there,you perhaps you need T3 as well as T4?

    Keep researching is all I will say so you gain a really good understanding of what is going on in your body, it will really helo when you tallk to docs.  And keep going back until the doctors listens to you or find a new doc.

    Good luck

    Ann

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  • Posted

    Factors That Affect Hypothyroidism Treatment

    Your age, diet, and any other medications you take can affect how much synthetic thyroid hormone you need to treat your hypothyroidism.

    Other factors that can affect how well thyroid hormone replacement works include:

    Soy intake

    Body weight

    Gender

    Being pregnant

    Iron supplementation

    Taking iron supplements may affect the body's ability to absorb levothyroxine, as can eating or drinking too many soy products, says Allweiss.

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  • Posted

    I am sorry to hear of your struggle with this.  You are not alone, however, I have heard of others who struggle to maintain enough thyroid hormones to feel well after either RAI treatment or surgery.  I flatly refused to have either option, myself.

    Even having kept my 'natural' thyroid, I have had problems.  When I was hyperthyroid I felt fine.  When I was supposedly normal I felt awful.  With Methimazole [similar to carbimazole] treatment I felt awful.

    I believe it is essential when dealing with thyroid problems, before or after any kind of treatment, especially with associated weight gain, NOT to try too hard to lose weight.  It is much better to eat a healthy diet plus cookies, cake, etc. and feel good with what you eat than to cut too many calories.  If you can drink at least a moderate amount of water that is probably the mose essential part of a healthy diet, then vegetables, whole grains, meat/protein, and fruit.

    I agree with avoiding alcohol and soft drinks, whether diet or otherwise, but I think potatoes are good for most people, as well as dairy, bread, even products made with white flour, etc.  I eat white rice whenever I eat any rice at all.  I wouldn't avoid sugar or salt unless my doctor specifically recommended it.  I have struggled with my weight since I had the hypothyroid symptoms, but now I'm more relaxed about it and have stopped worrying so much and am losing a little weight each month.

    There is another thing, though.  I'm on Wellbutrin for depression.  I believe that it has helped with all the symptoms of hypothyroidism, and apparently there is little to distinguish between those symptoms whether they relate to hypothyroidism or to depression.  I don't really care.  I only care that I feel better.

    You might want to discuss depression with your doctor.  Not feeling well could also cause depression.

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