I was diagnosed hypo at the end of Oct 2016 and prescribed 25mg of Levothyroxine. Since then I have being doing my own research (including on this forum) and as a result have been assertive in my requests for regular testing and increases in dosage (now on 75mg). However, my GP refuses to test for thyroid anti-bodies and has sent a message to me via his receptionist - "you don't need this test as you are already on Levothyroxine. I tried to explain to the receptionist that if I do have Hashimoto's I will need to seek out a relevant treatment protocol for the immune system but she just repeated the GP's words - blah, blah, blah!
Is it worth getting a private blood test and if so, which is a good lab? Or should I just assume that as the majority of Hypo sufferers also have Hashimoto's then I should go gluten free?
Any advice would be greatly appreciated.
Written by
Peggy-Priceright
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The above link takes you to the main website of this Forum. There are several companies that do Home Testing Kits - also you can read up on Hashimotos and the importance of testing those pesky anti-bodies
90% of hypothyroidism is caused by autoimmune thyroid disease (Hashimoto's) so you could assume you have it and try 100% gluten-free diet. There is no treatment or cure for Hashimoto's, Levothyroxine treatment is for the hypothyroidism Hashimoto's causes.
I am hypothyroid. I've never had positive antibodies.
I've been tested thoroughly for coeliac disease, and it came back negative.
I decided this meant I didn't have to go gluten-free. After getting the negative coeliac result I carried on eating gluten for another 5 years. I really didn't want to give up gluten.
In the end, with my health declining, I very reluctantly gave up gluten anyway, as an experiment. It was one of the best things I ever did for my health.
I had severe balance problems and I also had a shockingly bad temper. Having given up gluten my temper is now "normal" and my balance has improved immensely, although it still isn't great in the dark.
It turns out that gluten affects the brain as well as the gut - look up gluten ataxia - and this was my problem.
There is nothing to stop you doing a 2 - 3 month trial of staying gluten-free whether you have antibodies or not. You could always go back to eating gluten if it didn't help.
Thanks humanbean, as you were previously, I too am daunted about giving up gluten. I have suffered with lots of gut issues for years : GERD, IBS, Diverticulitis, lots of bouts of gastritis. Yet have had so many mixed messages from NHS doctors eg "you're negative for coeliac so don't need to give up gluten" "you need to eat more fibre", "eat less fibre", "don't eat nuts", "nuts are not a problem" and the best of all: "you'll have to take acid suppressing drugs for the rest of your life" and when I ask how do you know I have high levels of stomach acid without testing me I'm just told "you wouldn't have these stomach problems if you didn't" !! All this goes against recent research on low stomach acid being the culprit in the vast majority of such cases - and now a diagnosis of hypothyroidism which is linked to gut disorders aaaaagggghhh!!!
Sorry for the rant, but I've gone from worried, to angry to damn frustrated to feeling hopeless because I don't know how to help myself.
I think you are right Humanbean, giving up gluten for a while could help and I really appreciate you giving me the benefit of your own experience in this. I'm due for my bloods to be taken next week which I hope will lead to my Levo being increased as I've got a lot of continuing hypo symptoms. I will then concentrate on an elimination diet and post any changes.
If you want some very good info on low stomach acid and how to deal with it, I found this series of articles to be well worth the effort of reading. As far as I remember the author doesn't mention hypothyroidism as a cause of low stomach acid, but it doesn't really matter. The management of the condition is worth learning about.
Wow a wealth of information Humanbean, thanks! I weaned myself of the PPI Omeprazole in august 2015. I was told by a consultant that I would need to take it for life because I had too much stomach acid - a conclusion arrived at without testing my stomach acid levels!!! I've only had 1 episode of gastritis and 1 episode of reflux since and they were both my fault - wine and spicy food! I guess you've got to get the bad reaction to help you learn what your own personal triggers are. Still I'm in a much better position not taking that awful acid suppressant which in my view is over prescribed.
Personally I would get antibodies tested. Assuming you have Hashimotos, then when you go gluten free you can retest periodically and hopefully see antibodies slowly falling (mine have halved in a year )
I did 23 years assuming medics knew what they were talking about saying I didn't have a gluten issue. What a waste. So completely different gluten free. (More on my profile)
I really didn't want to go gluten free - but feel so transformed I have found it's easy to stick to
There's masses of GF options - my recent find is ready to roll GF pastry. Home made pies are back on the menu & so much nicer than anything bought
Most medics have absolutely no idea Thyroid, gut function, low stomach acid and gluten intolerance is all linked
In order to get well we have to take control of our own health
I'm totally with you on that SlowDragon, I wished I started taking more responsibility for my health sooner. I now know that absolutely no-one else has more of an interest in keeping me well than myself. I was waiting for my most recent test results before trying to go gluten free. Got them today and they indicate I should be euthyroid, but that's not what my body's says!!! Thankfully I'm on this forum now and members are giving me some really useful advice. Such a lot to learn!!
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GP won't accept private test results. Why?
A huge thanks to Thyroid UK for showing me how to deal with my GP!
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