Gluten free not having an impact.......

[Jules_Essex]

Hi All - I've not posted for a while so will try and do a brief history! I was diagnosed as hypo when 21(I'm now 39) and been on levo only until I saw an endo about 2 years ago and he introduced T3. I'm currently on 100mcg of levo and 20mcg of T3 and have been on that for around a year. Endo won't let me raise T3 as my TSH is supressed - think it was 0.02 on the last test.

I've been getting progressively worse for the last 5 years and have tested with a low positive for antibodies which I think make it certain I have hashi's (endo agrees).

I've been getting increasingly worse muscle pains, headaches and fatigue and also have been diagnosed with lichen planus of the vulva which I know is autoimmune too and have had treatment ongoing for that for the last 5 years ago.

I've seen a few different rhuematologists and I'm currently being treated for Sjogren's syndrome due to dry eyes, dry mouth, dry vagina and have recently started having salivary gland issues. I'm antibody negative for Sjogren's but the consultant is treating me with hydroxychloroquine for nearly a year now and I have times when I think it helps and times when I don't think it does.

I've pretty much been tested for everything - I have B12 injections 3 monthly and am on prescription Vit D which the endo is monitoring.

I've been gluten free for just over a year now and I find it incredibly hard (and expensive!!) and I honestly don't feel like it's had a positive impact so would really appreciate hearing from others if it helps them as I'm at the point now where I think I'm thinking about giving up on it and going back to gluten again but I'm not quite sure what to do

I'm a teacher and I'm finding working increasingly difficult as it takes such a toll on me with fatigue and headaches. I've reduced back to an 80% timetable, now a 70% and I don't even feel like that is helping anymore so am really feeling like I'm at a bit of a desperate crossroads with things now

[Clutter]

Jules_essex, What is your FT3 level? If it's low it may be beneficial to reduce Levothyroxine and increase T3 which may not affect TSH.

If you've had no benefit from g-f ie Hashi flares, antibodies and symptoms not improved you may as well reintroduce it.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[gabkad]

What other vitamins and minerals are you taking? Have you had your retinol blood level tested? Vitamin A.

If you are only on B12 and vitamin D, then there maybe issues with imbalances with other vitamins like A, K2, K1 and folate.

A lot of 'faux foods' that 'look like gluten containing foods' are pretty awful and expensive. There really shouldn't be any difference in the cost of eating non gluten containing foods provided you don't want them to look like bread and biscuits and crackers and pasta.....

[humanbean]

For advice and help on eating gluten-free you could join the Gluten Free Guerrillas, a community here on HealthUnlocked :

healthunlocked.com/glutenfr...

[Jules_Essex]

Thanks for the replies. My most recent full bloods were from last December and they were:

Free T4 / Thyroxine of 16.3pmol/l (normal 9-23), free T3 5.6pmol/l (normal 2.5-5.7), TSH 0.02mIU/L (normal 0.3-4.2)

If anything from those the T3 looks right at the top end? I've had more recent bloods done by my GP but my local hospital will now only check TSH despite me being on T3 which is madness!!! I'm going back to Chelsea and Westminster in December so they'll check everything properly again.

Tbh I don't think I've ever had hashi 'flares' as such as I just feel generally rubbish all of the time without much fluctuation

I think it's bread, pasta, biscuits, crackers etc that are exactly where the spending seems to have sky rocketed. I don't have a problem with doing it and I've done if for a year without breaking it once but I just don't see how it's helping me at the moment?

Folate has definitely been tested but my pack of blood test results from the last couple of years is literally the size of a phone book so I can't seem to track them down at the moment. The other vitamins haven't been checked but in all honesty I won't be able to get my GP or consultant to run them I don't think Not sure about the retinol as I've got so many pages of blood results and I can't seem to decipher most of them......