Thyroid,coeliacs,b12????

[scarlet35]

Can anybody help me

The doctors say I have interactive thyroid and have been giving me 200 mcg of thyroxine and I still don't feel right .

I have given up with the doctors as i feel much better not taking thyroxine , but about 3 weeks into not raking them I feel really tired so I start taking them for a week .

I also have coeliacs and b12 deficient ,where the doctors tell me to take folate tablets for as and when .

But I feel ill every morning till I wake up properly which is normally early afternoon.

I feel unsteady on feet ,unbalanced and groggy head ,i have to wear a tens machine for half the day till my body wakes up .

I am wondering about vitamin b12 and injections for this

But my doctors are a joke and are no help at all

I am 43 and this has been going on for 10 years now !!!!

[Fruitandnutcase]

If you have any blood test results scarlet35 you need to post them and it will give people an idea of what might be wrong.

Ideally you would want results for B12,vitamin D, folate sand ferritin as well as all the usual thyroid tests.

You need B12 etc to be well up in their ranges to help your thyroid and keep you feeling good.

Im in remission from Graves Disease and now I just by pass my doctors and keep my own checks on my levels. I use the Blue Horizons Thyroid 11 test which gives me all of these things and I use their home fingerprick test although you can pay a bit more and have the bloods drawn in other places.

After reading your post I’m not surprised you are fed up with your doctors so hopefully you will get some good advice on here. There is also a HU group for pernicious anaemia which mightalso be useful for you.

[Jazzw]

Hi Scarlet. First of all, poor you - have just read through previous posts about what happened to you.

So, you have an underactive thyroid, Coeliac Disease, low Vit B12 (which is common with both Coeliac Disease and hypothyroidism) and low folate (again, common with both).

Much of the pain you’re experiencing could be due to undertreated hypothyroidism and low B12. It could also be due to low Vit D - has that been tested? And I expect you’ve had low iron too.

You’ve been left to suffer long enough - time to take control - it’s the only way you’ll ever feel better.

First of all, you need to know your blood test results - everything. You are entitled to have a copy of your results if you’re in the UK.

I can practically guarantee you’re not being appropriately treated - but you’re not helping matters if you keep going on and off levothyroxine - you need to take that for at least 6 weeks continuously for it to build up in your system and then have your blood tested to see whether you need more - and to see whether you’re converting enough of it into the active thyroid hormone T3.

How low is your B12? Given your history, I’d say it’s almost certain you’d benefit from B12 injections but you need to know your blood test results first.

The only way out is through. Start reading all about your thyroid condition - reading lots of posts here and asking questions will soon raise your understanding. You need to understand it to get well. I get the impression no one’s ever explained what happens to your nutrient levels when you have Coeliac Disease either.

Time to take charge - your doctors won’t do it for you because the only person who’s really vested in your health is you. And if you stop and start medication it isn’t helping your doctors see the true picture.

You can recover - but it does take effort. And I know effort is hard when you feel so ill. Wishing you all the best xx

[Judithdalston]

Have you results of initial blood tests to show you are hypothyroid? Have you just been given 200 mcg levothyroxin and left to get on with it? This is not the way to introduce it- start with 50 mcg, wait 6 weeks, when you should then have another blood test, and add 25 mcg ( wait another 6 weeks, add 25 mcg etc). Your TSH ( which is probably what you were diagnosed with in the first place) should be at 1 or under, FT4 and FT3 in upper part of ranges. If your B12 was deficient then the doctor should have arranged B12 injections( look at the parallel unlocked forum for Pernicious Anemia for related tests). Worth finding out if your VitD, folate and ferritin are at upper end of ranges too, probably not if coeliacs. Many of us resort to having private blood tests for full thyroid and Vit/ mins tests as doctor/NHS won't do them - look up Medichecks and Blue Horizon labs. Does sound like your doctor is useless( if not worse), many members got proactive with our thyroid health and DIY and you will always find support and advice here.