Hypothyroid, new here & suffering from information overload

[Guest guest]

Hi everybody

I joined this group a few days ago and thought I'd have a thorough browse around

messages, files & database before I start with the inevitable questions that

have been probably been asked a thousand times here before! I find it rather

difficult to navigate this message board to read through older posts but maybe

it's just me? Apologies in advance for what must an extremely long post!

I was diagnosed with hypothyroidism in 1992 (age 27) while still living in

Germany and have been taking (levo)thyroxine since. In 1999, I was diagnosed

with PCOS (while in London) - it required considerable persuasive powers to get

me tested, anyway, at the time, I was well and assertive enough to insist on it

That said, I'm not receiving any treatment for the condition.

However, I've been suffering extreme ill-health for over 10 years which I was

made to believe was due to mental health difficulties. As there had been

real-world problems (discrimination at work/bullying), I pretty much went along

and never ever questioned whether the lack of improvement over the years

(actually, I've had phases where I was feeling like my old self, only to have it

stop again) had anything to do with the improper managing of my thyroid

condition - until 2010.

Too horrified/traumatised from the last work experience, I decided to go back to

school, so from 2006 until 2010 I was a full-time student. Also, in that time I

moved from London to Aberdeen and I've lived in the East Midlands since

September 2009 which means there hasn't been much in terms of consistent medical

care. Turns out, however, studying causes (me) as much stress as work! In Feb

2010, my (university) GP referred me to yet another ineffective, quick-fix,

short-term CBT programme during which my health actually declined. (I now think

that due to the ongoing stress from the assignment period Dec2009/Jan2010, this

may have affected my thyroid levels). From March/April 2010 onwards, I developed

several physical conditions I rarely had trouble with before: unspecified aches

all over, trouble taking air in, banging headaches and worst of all, trouble

concentrating, understanding, forming clear thoughts and the most terrible brain

fog. (Weight problems have been my dilemma since childhood but since I've also

been battling with an eating disorder, I don't really have the evidence to

correlate it with the hypo/PCOS) Especially the mental/cognitive problems

totally interfered with my ability to produce academic work. I think I went to

see the GP 3 or 4 times to complain about the symptoms and was sent home each

time with the comment " it's the anxiety/stress/depression " .

I started my own research (thank god for internet!) and most info seemed to

suggest that my ailments indicated hypothyroidism. Up to that point I was on 150

mcg levothyroxine. I then upped the dose myself to 200 mcg (I had only 100 and

50 mcg tablet available) and within 5 days, all symptoms had disappeared! I did

that for ca. 4-6 weeks, then saw another GP in the same surgery and explained

the above. Blood was tested and he asked me to reduce it to 175 mcg and it

didn't seem to make a difference. The brain fog stayed away and I was able to

produce work on my usual high level – amazingly enough, for the first time ever,

I went through an entire year without weight fluctuations without having to

constantly starve myself or exercise excessively.

But, more stress was to come from the very moment 2011 started. Troubling family

news, problems with student accommodation where I had been living since 1.5

years (forcing me to move just weeks before my final year (and in total 3 times

within 6 months after that, despite chronic back pain), having to withdraw from

study, being involved in a lengthy (and still unresolved) complaint with

university, and ending in my mother's passing on in November. In late October I

registered with a surgery in my neighbourhood since I no longer went to uni to

use the surgery there (too far away). They ran a blood test (I think it was TSH,

T4) and put me back on 150 mcg (around early November). By mid-December, my

health had declined so much that I went to see another GP at that new surgery. I

tried to explain to him the arrangement about the 175 mcg I had come to with the

uni GP but he wouldn't have any of it. He was just pointing at the screen and

tell me that the blood test shows that I'm `hyper'. Since he didn't make the

effort to read my patient history, he then started his speech about it could be

`mental health' related. Basically, he sent me back home with a myriad of

life-quality lowering conditions without giving a damn. Really, I've so had it

with being shut up and pushed in that psycho-corner. I know what depressed means

which I really was from around 2003-2006 but that's not it. And why didn't I get

super-depressed when this accommodation nightmare was going on between Feb and

May 2011?

Unfortunately, at the time, I didn't know enough how to read/interpret blood

tests (I do only vaguely know) so I couldn't really argue the validity. I had

another blood test late January (TSH only) and I thought I could force the issue

by deliberately taking less medication before the test. Starting the week

before, I reduced the dose to 100 mcg and didn't take any at all 2 days

before/on the day of the test. A few days later, I get a text message from the

surgery saying my blood test came back `normal' and I should stay on 150 mcg.

Unbelievable. Just in the last 2 weeks I've been feeling like a zombie. I wake

up tired (I wake up too early and can't go back to sleep) by mid-day I'm ready

for bed and by 5 I wonder where the time has gone. I can't be bothered to keep

my flat clean as my whole body hurts. I've gone up 2 dress sizes without changes

to my diet; I've gone on a low-carb diet 10 days ago and not shifted one darn

lb. Well, I suppose I don't need go on as many people know what I'm talking

about.

My next appointment with the GP is next week. Sorry, if this sounds silly but

what can I do to get the new one to listen? I'm so exhausted, for one, so it's

hard to get this all in my head. But due to the previous experiences, I already

expect a negative outcome. Can I insist on getting a referral to an endo? But

then, from what I gathered, most give unhelpful advice too.

I've seen people talk about private practitioners more willing and interested

but I assume this is only feasible if you can afford to self-fund? What does one

do on benefits? Go on suffering? I've got only a couple of hundred quid left in

savings, should I spend this on private blood tests (which?), NDT without

prescription? I'm really clueless, all I know is I feel like hell and can't go

on feeling like this any longer! Today, I received a copy of Dr B

Durrant-Peatfield's `Your Thyroid – And how to keep it healthy' – is there

anything I can copy and take to the GP.

Any advice and suggestions will be greatly appreciated. And many thanks for

reading if you made it to the end!

Connie