Endo was an ass, reduced dose. Giving up on NHS... - Thyroid UK

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Endo was an ass, reduced dose. Giving up on NHS and want Armour?

sheridankirby profile image
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A brief history. Pre diagnosis, I had 10 years of going hypo/hyper, ending in a BIG hyper where the doctor said I was bi-polar and offered meds. I refused. I went on a cycling holiday instead. I stabilised, fell pregnant, and post baby , after being fobbed off with PND for months, was finally diagnosed with a TSH of 450 and T4 of nil.That was in 2007. Since then, my dose has climbed and climbed, and I have never ever felt well. I'm consistantly backed up IYSWIM, I have a non existant libido, i'm just not as sparky, and have no energy, but I get by.Recently I started to feel even worse, with fast hairloss, weight gain, dry skin so bad it's bleeding, 25 day long periods, memory loss, you know the score. The GP was baffled, since my results were TSH 0.03 T4 14, and I had been told by the endo previosuly (in 2007) that I should be ok surpressed and concentrate on getting my T4 up. Anyway, he referred me back. The endo promptly looked at my sheet of results, told me I had lost not gained weight (that would be because last time I had just given birth, DUH!) and that I was hyperactive. When I told him I wasn't, I knew what hyper felt like, and shouldn't my T4 be hyper too, he said I wouldn't necessarily notice being hyper, but I was, and my bones would suffer, so he reduced the dose by 25mg. I asked to try a T3/T4 combination drug, he said T3 wasn't necessary. When I referred to some studies, he told me he wished people wouldn't use the internet. I pointed out I am an ex medical librarian and perfectly capable of finding and evaluating the same abstracts he should be reading. Silence. Why can't I try Armour? Because it is unreliable in batches. Hang on, haven't you just agreed that I can have a named brand of levo, because "some batches are unreliable"? Then I am sent for a short synacthen test at 12.30 in the afternoon, when it will be useless as a diagnostic tool. Honestly, this guy kills me, like , really.

All my vitamins are fine.

So, I am at an inpasse. Back in 18 weeks. Yes, 18 weeks! In the meantime, I want to talk to people who have tried dessicated thyroid, and find out how, where, why, how much, etc. I would see a "good" doc but I am brassic, and just can't afford it. Please help with your advice!

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sheridankirby
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The protocol for using natural thyroid is that you start on a low dose and up by half a grain (a grain is 60 mcg) every two or three weeks. When you take too much and feel hyper, you leave off for that day and go back to the previous dose.

What is your ferritin level? Lack of iron is thought to be linked to hair loss. Ferritin needs to be around 70 to be of any use.

You also need your free t3 testing How does the doctor know you are converting t4 to t3? Magic?

T3 tests are less than £20 from lab 21. Without knowing your level it's impossible to say if you need it or not. Your doctor sounds particularly stupid. Why do you stick with him? I'll bet he wishes people wouldn't use the internet... :)

Nel

sheridankirby profile image
sheridankirby in reply to

My actual GP is fab, he referred me because he had done all the vitamin/ iron etc and was confused as to why my levels were not as he would expect (TSh so low, T4 still lowish). Unfortunately, the ass was the endocrinologist at Addenbrookes! So the referral was a waste of time. I am just off to the Gp this morning to moan and ask if he would consider ignoring the endocrinologist and giving me a trail for dessicated. I don't think the practice will allow it though, but i'll ask first!

in reply to

TBH not heard any good reports from this hospital, but have heard of several bad ones....

carolr profile image
carolr in reply to

Oh yes they don`t like to ignore the consultant even when the consultant does not want to give a confirmed diagnosis. He tells the GP to give me whatever then the system goes into denial.. Your mad after all.. No one wants to take responsibility.

Blood tests they are like the wind written on worthless bits of paper depends who looks at them what they wish to see. Its all in the eye of the beholder. Proving the test results still exsist.. Even if they can be found again they still igore their orignial answer was what? Its a riddle a mind game for us all.

Davidsons Principles and practices "draw your own conconclutions don`t take any notice of what the patient says.." Or words to that effect.

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