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[thyroidnodules]

I read the comments on this forum every day and i find it disgraceful and frustrating to read a lot of comments where people are obviously ill and doctors are so ignorant and stuck in their rules for thyroid treatment. i also was hyper with a large nodule on my neck. i received RAI treatment and was told i would be on levo for the rest of my life. however, after treatment, other than seeing my endo for other nodules one of which he wanted to remove surgically, i received no meds from my gp or endo and remained tired fat and out of it, while trying to hold down a full time job. my tsh eventually went higher and higher and they reluctantly put me on levo which did absolutely nothing for me - in fact weight gain increased. after ready many books and with the help of all the info on this forum i started NDT and now feel semi normal. i have to go for regular blood checks at my gp surgery and i initially didnt tell them i was self medicating and also at that time they they still did a T3 test. when this stopped i started to get tests from medichecks. I came clean about self medicating to my gp. they were very non committal and after my last blood test with them, i was told by my gp that my tsh and t4 were too low and that she was going to inform my endo that i was taking ndt. she received a response from my endo who said if i continued to take ndt they would no longer assist me in monitoring the size my other nodules. I said i didn't have any other alternative at which point i was offered T4 and some T3 but i have to discuss this with my endo first. i am waiting for the appointment but must admit i am a bit nervous as I really don't know what to expect. Its awful that thyroid sufferers have to fight for treatment

[Gingersnap202]

Yes, it truly is awful. .. One of the things we all have to learn, is to stand up for ourselves.

Now, that doesn't mean that we should treat the doctors with disrespect, but we absolutely MUST do our best to educate them to our OWN needs! ...I have empathy for doctors. They are between a rock and a hard place. If they follow the Standard Of Care, we keep getting sicker and sicker. If they treat our symptoms with something outside the Standard Of Care guidelines, they fear being ostracized. (Andrew Wakefield!) ... Medical schools and Medical societies need to catch up with the times. How we get that to happen, I do not know. (I actually have ideas on how, but at age 80, I don't know that I really want to start a revolution! LOL! )

[Moore-23]

My father was ill with a hyperactive thyroid in 1970s. They operated on him but did not give him any medication at all afterwards. How he has survived until now I just do not know. He will be 80 next year.

Sorry to hear about what you are going through. Hope it all goes well for you.

(BTW My doctors are not much help either.)

[SlowDragon Administrator]

Recommend you get FULL Thyroid and vitamin testing via Medichecks before seeing endocrinologist

Some CCG areas are better than others on funding T3

[silverfox7]

I think one issue that doesn’t help is that every cell in our body can be affected so we can end up with very varied problems which some doctors I think find difficult to take on board. So many of us are probably told we can’t blame everything on the Thyroid!

[Batty1]

Yes, it stinks. If I knew then what I know now I would have thought harder about removing my thyroid (pap cancer) my Endos (had many) called me crazy and said my thyroid levels are perfect and all of my issues are not related to being thyroidless just recently with 2 medications changes my cholesterol levels jumped 30 points and guess what ....intern Endo still says not thyroid related.

If my cancer doesn't kill me heart disease certainly will!

[LAHs]

Yes, you are dead right. If this helps, most of us here have walked that path. I am on my 8th doctor and he is OK. I think the answer is to keep studying and experimenting, it's a sad situation. I had never had a biology lesson in my life when I ran into this buzz saw. It was a subject I had very little interest in but I sat down with an article with a dictionary and Google and hacked through the whole article until I could finally read medical papers. That first article took me about a month to get through - but oh boy did I use that information - and very fortunately I had a doc who was willing to work along with me since he didn't understand it all much either but he ws very interested to learn. We both learned a great deal - and then he retired! He was only my 2nd doc and I could have worked with him forever but, well, docs disappear or retire like anyone else.