New member - hello and qus before I see my endo...

[Guest guest]

I'm a new member, so hello all! About 15 months ago I came off my bike and hit

my head. I was diagnosed with concussion but was very shaky. When the shaking

didn't stop, a month later my GP got a thyroid test (FT4>50) and I had Graves.

Pure coincidence??? I was referred to an endo and put on block-and-replace; It

took a while to get the doses " right " , in which time I was wildly Hyper, hypo

and Hyper, eventually " settling " for about 8 months but felt really lousy and

was always told " give it more time to settle " . Then I went neutropaenic in Feb

so am off all thyroid meds and had RAI almost 3 weeks ago. I'm expected to go

hypo (I was dosed so I would go hypo), but am trying hard to avoid the T4

replacement as I was on Eltroxin before and I'm pretty sure that was why I felt

so lousy on block-and-replace. At that time I wasn't aware of any alternatives

and my endo wasn't forthcoming.

I'm seeing her next week, but fully expect to be told that T4 is all she is

prepared to prescribe. Does anyone have any good ideas on how to approach this

one? I'm looking for other possible routes - and NDT seems to be the one to try

for.

There is some difficulty in paying for things - not so much for the initial

consultation, but the ongoing costs of drugs and testing, if I need to go

privately. So in the short term getting as many tests as possible done on the

NHS would be useful. Has anyone in my situation managed this? I'm hoping that my

GP will help out with a second opinion...

Of course, whilst I wait for an appointment and go more and more hypo, I expect

that my current endo will want me to take the T4. Any great suggestions on

alternatives in this meantime?

For info, on the T4 I was up-and-down through the day, difficult to get up, then

shaky in the morning - unable to write sometimes, sleep all afternoon (typically

2 or 3 hours of HEAVY sleep), survive the evening, then mixed sleeping at night

- would go off OK, wake with wild dreams and be really wide awake for a while,

restless etc. Lousy concentration and memory (really unusual for me), and my

eyes were very dry and swollen.

I stopped all my meds about 4 weeks ago, and had the RAI 3 weeks ago. Last week

(about 10 days after the RAI, 17 after stopping meds) I suddenly felt a lot

better - no afternoon sleep, energy (!), best I had been since the bike

accident. Any guesses on whether this was a timescale that something was out of

my system, or was it the RAI starting to work? I'm now waiting to go thoroughly

hypo, but making the most of it whilst it lasts!