Richard Faces Frustration Finding Treatment for Hypothyroidism After Thyroid Cancer


I thought Richards comments about the battle he faces getting treatment for hypothyroidism after having his thyroid removed for cancer, would be of interest to many readers at metabolism.com.
Richard writes:

I recently ordered Thyroid-S on Amazon.com and after all the research and apparently good results I have found online, I think I made the right choice. I had my thyroid removed because of cancer in 2005, took Cytomel at first, felt great, told to stop cytomel and start Levothyroxine, felt horrible. Two months out(125mcg) TSH was 43.0, increased dose to 137mcg wait another 2 months, TSH was 31.0 Finally told to take 200mcg and TSH started to come down. It took about 6 months to get my TSH where they wanted it and for the side effects I was given all types of medications. They said it couldn’t be the Levothyroxine!! Well, it’s been 7 years now and my life as I knew it is gone. I am nothing like I used to be and because of this I am NOT going to listen to the doctors. I stopped all the sleeping pills, pain pills, AD’s, anxienty meds and can now see what is left. I have been to Endocrinologists who insist T4 meds are fine for everyone, T3 & FT3 can not be checked and is of no concern, natural thyroids are NOT safe and of no use. I find it amazing they can proclaim T4 meds a cure all, it’s all my body needs!! yet can not explain why I feel so bad. I never felt this bad when I HAD cancer and only after my “TT” everything went downhill. All they do is run blood tests and state everything is within range. My TSH is now 0.14, FT4 2.3, the other tests are so outdated they are worthless but to say I am extremely hyper. But the one test that could possibly help, Free T3, they won’t run. This was done on July 2nd 2012 and they said Free T3 CAN NOT be measured.

When I finally got mad enough the doctor said to take a lower dose of Levothyroxine. Going from 200mcg to 150 is not going to make a difference. I had to stop taking Levo to finally see that IT was causing my problems. I stopped the T4 meds a few months ago, started to feel much better, but went way hypo, TSH was 177.30 Except for no energy most of the side effects went away and I told them so. But they do not listen. I have been asking questions on other websites and doing my own research and the most important aspect of thyroid hormone replacement threapy is how the patient feels. I don’t care if the blood test are OK if I sleep most of the day and night. Once you start to realize how much you have lost due to T4 meds you wonder what went so horribly wrong.

When you get to the point of not having any sort of life left, I feel so bad I rarely leave the house and I know I can’t go on like this, I have to do what’s best for me. What I don’t understand is why any doctor when told the patient has no reason to keep on going just says your blood tests are fine and it must be something else. I know there is more than can do, like maybe prescribe SOMETHING else, maybe Cytomel or Amour or Thyrolar. I had the same experience in the ER last year, although I was in much worse shape.

Only because I do have some normal moments in my life, at times the stars align and I don’t feel quite so bad, I know the T4 meds haven’t destroyed everything. I hope to start Thyroid-S soon and find a decent Endocrinologist who will work WITH me to find a medication and dose that helps me get back to normal. I realize this may take more than the 10 minutes they allot for the appointment, but I thought that was why they became doctors, to HELP people.

I am like many here who have been through years of misery, never really knowing what happened or why, it started slow and just kept getting worse and you make excuses and do your best. I wish I had done more years ago and not just listened to the damn doctors.

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  • Christine Aygin

    Richard – SO sorry that you have had these awful experiences – like most of us with hindsight we would do things differently – don’t beat yourself up – we cannot change the past only the Future – by doing things differently – and it seems that is what you are going to do. I myself need to take courage and ask my Muslim doctor if he will support me in trying Armour or it’s equivalents ( I live in a Muslim country) and am not even sure if they will allow it to be brought into the country. We will see. Hope you get good results from your endeavours Regards