I've had this cursed disease for 4 months now, doctors are dragging their heels and I feel shocking. At best I can say that life is only tolerable when I'm sleeping. Christ how difficult is it to get them to sit up and start pescribing something?
I really have had a belly full. Even started looking at dignitas tonight.
Self medication is an option...
That's what I did. Not necessarily recommending it, but armed with the results of private blood tests and the experienced folk here, it's very doable, and preferable to losing even more of your life.
I will now provide the obligatory "no one here is medically trained" line and "everything said here should not be considered medical advice" get out of jail free card. 
Mike, there isn't anything they can prescribe for Hashi's. If your thyroid hormone is low Levothyroxine will replace it. If you post your thyroid results I can tell you whether self-medicating may help.
Hi Clutter: My TSH has been up at 4+ for 5 years Since 2010 T4 has been low end of spec 10.8 - 13.0 for this year Although the TSH has waxed from 4.2 (June) to 2.5 (July) and 3.0 in Aug. Thyroid surgeon has repeated all tests last week (not in yet). My TPOab are 491 3/9/15.
thanks
Do you have your blood tests taken at a similar time of day? TSH - the only number that interests too many "do it by the book" doctors is at its highest in the morning, and tends to drop as the day goes on. An 8am test will give you the highest TSH - a 4pm one will be lower. The time of day you have your blood tested might be the difference between walking out with a prescription for Levo, and being told to "watch and wait".
But low T4 is a clue that GPs should not ignore. Although your thyroid is being screamed at to make more, it barely gets off the bottom of the range. That's a failing thyroid - one that's under heavy attack by antibodies.
Mike, The recent fluctuations will be due to Hashi attacks. Nodules rarely affect thyroid levels so loss of thyroid function is due to Hashi's.
A few members with TSH around 3.0 have felt improvement in pain, fatigue and low mood with thyroid hormone replacement. I'd be inclined to tell the surgeon how desperate you feel and ask him to trial you on Levothyroxine. If he doesn't agree consider self medicating.
He did say that we need to look at the thyroid function, but he mentioned an endo at that point. My fear is another 3-6 week wait for a meeting with him, probaly more bloods and futher debate. Or maybe he's waiting to see if my thyroid has to come out due to the lump in which case I assume the medication would be altered to facilitate whatever is removed rather than medicate - surgery - medicate but with moving goalposts as the thyroxine cursing through my veins would be mine + medication and harder to prescribe a starting dose...I don't know it's just grinding me down. You said FT3 but they haven't measured that? I assume you meant T4? Thanks again. Mike
Mike, I meant TSH 3 and have edited my reply.
The reluctance to prescribe Levothyroxine hitherto is because your TSH has not yet been over the ref range.
If you have partial thyroidectomy you'll be tested for thyroid levels a few weeks later, usually 6, I think, and Levothyroxine prescribed, if necessary. I didn't have blood tests after PT but bloods were euthyroid and unlikely to have changed drastically in the 3 months until completion.
If you have complete thyroidectomy you'll be prescribed Levothyroxine the next day.
MikeR I'm sorry you are at the end of your tether with doctors who have diagnosed you but not yet given you medication. You will have to insist tomorrow that your GP prescribes levothyroxine.
If you email louise.warvill@thyroiduk.org.uk and ask for a copy of Dr Toft's article in Pulse Online. This is an excerpt:
2 I often see patients who have an elevated TSH but normal T4. How should I be managing them?
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.
Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough. "
I certainly wouldn't think of it is as suggested above " the patient should be considered to have the mildest form of hypothyroidism." So it just goes to show how out of touch the medical profession is with our conditions.
Mike
My bloods showed I was "sub-clinical hypothyroid" for 6 years (TSH from 5 to 11, but T4 always just in rang), but never a sign of antibodies until a month ago. They must have been there, but apparently that's what they do. Show up occasionally...
If it's any consolation, 6 years ago I was at the point where I was thinking about suicide 24/7. It wasn't a case of if, it was when. The only thing that kept me going was my determination to not do to my kids what my dad did to me (he was for certain undiagnosed hypothyroid, as was his mum before him!!).
I set about finding what was up with me & getting it sorted. Telly became a thing of the past. I must have spent 8 hours a day educating myself & the other 16 thinking about it. Testosterone deficiency, sleep apnea, deficiencies in B12, zinc, folate & D3 as well as Hashis. Ready for the knackersyard really...
I'm feeling 1000% better now & haven't had those thoughts for years. I still think there's better to come & I'm driven to getting there.
1st thing is get yourself on a Gluten/Wheat Free diet. Don't ponce about with Gluten free products, just don't eat any grains at all. None. Read Grain Brain & Brain Maker & watch all Dr Perlmutter's videos & podcasts.
Listen to the advice here about testing & medication.
Chin up. Laugh yourself through the lows in the knowledge that those who've not been there will never really experience the highs. Glass half full.
The Antibodies were only notice in early Sept 15. I can't watch TV anyway I never have been able to. My problem is that nobody as yet has said what's up with me. My Hashi or subclinical Hypo is only what I've researched. They have found a nodule on my thyroid and that's being check out in the lab currently. The words suspicious growth 1.7cm long and the first attempt at a Fine Needle aspiration proved inconclusive. All scary. Thanks fella.
Well it's early days then, so be patient.
Listen to the advice here, which will help you to get your GP to prescribe.
Get off the Grains. Maybe not what you want to hear, but the fact is your Immune system is attacking you, so you can either do something about that or not.
Get your GP to test Testosterone, B12, Ferritin, Folate & whatever else is advised here. Read up on these. Get a print of your results & put them up here.
You're on the way up now.
Thanks fella. I'm off the gluten and wheat have been for about 6 weeks. I have been using GF bread but that doesn't seem to make things flare. Given I've only been at the GF diet for a short period of time it takes a while to find a new food repetoir. But I'm eating red meat, fresh veg, fruit, chicken, eggs, fish, sweet potato. No rice, pasta or pulses. Thanks for the positive vibes.
I know it sounds depressing, but nothing seems to work fast in the endocrinology world. It really is so hard, because we can feel so so unwell, and the doctors just don't seem concerned. I used to hate the "come back in a couple of weeks" type comment - they have no idea that coping for that period of time can feel like hell on earth.
You've done well by going gluten-free, it took me a long time to do it myself. I have since made lots more changes to my diet and general lifestyle - bit by bit, and all at a pretty slow pace. It has all helped immeasurably.
It can be such a slow journey, but you will muddle your way through. It took me a long time to realise that there isn't always a quick fix to this darned disease, but I am in a much much better place than I was when first diagnosed (despite the ranting I often post on this site). Feeling low or depressed is horrible, been there and done that with bells on (and still do sometimes) - frustration at doctors who don't appear to care, and just being ill all the time is horrendous.
I would ask your doctor to let you try levothyroxine.
Thank you. I had a long chat with the quack and he said that whilst I'm under the care of an Thyroid surgoen, a Cardiologist, Urology and probably an Endo he didn't want to unsettle things by prescribing something that may undermine the foundations of their collective investigations. I get that totally as an engineer, sound logic. That said when feeling at a low ebb, I struggle to find any positives. And it seems impossibly slow as times. Best foot forward and all that.
You poor man. Sorry - that's sounds patronising. I mean it though. I've been involved in this for the last 6 months (although probably much longer if I though about the last time I had eyebrows or weighed anything like normal). It's horrible... but it will get better. Actually, thyroxine made me feel MUCH worse to start with, but I think because they put me on too low a dose. Now I feel a bit better, but can't imagine ever being able to play tennis or run with my children again. You need to find a doctor who trusts your symptoms and helps you. Isn't that what they're supposed to do?? If you don't find that, change or complain...or cry....and ask this site for help. Please don't think that you have to accept feeling rubbish when there are medicines here to help.
Good luck and big hugsx
Night sweats - unmedicated hashimoto's
Pure miserable!! Please help!!
Hashi's in remission!
Supplements (Hashi's)
Hashi's and hypothyroidism
