Hashimotos and gluten....

[ChrisH100]

Ending Consultant advised that I should not stop eating gluten when I asked the question unless I was gluten intolerant which I was tested as not being. When I read about hashimotos they suggest the opposite....I'm not sure what to do for the best...any advice??? Thanks chris

[Lozzer66]

You dont have yo be gluten intollerant or celiac to have to avoid gluten Proteins in gluten mimic thyroid proteins and when you eat it it your body sees it as that and promotes the antibody attack on your thyroid ..even if your not really feeling it it's doing its damage and destroying thyroid tissue making it eventually underactive and reliant on hormone replacement! Consultants advise on many things that we should or shouldn't be doing with our condition but most is completely uneducated and outdated !I'm just starting out on gluten free again and have cut down a lot , but it has to be 100% and that's what I will be doing soon !

[ChrisH100 in reply to Lozzer66]

Thanks lozzer has your condition stabilised - do you feel normal....

[Lozzer66 in reply to ChrisH100]

I'm getting there....I'm self medicating with ndt and recently added an adrenal glandular and vitamins.Generally I'm ok ...although my biggest problem as been chronic daily headaches for the last several years and all avenues regarding them have been exhausted. ..I think the key for me now is to really get to grips with my diet ...I'm not over weight (suprisingly! )but I have always consumed way to much rubbish for years but only came across the gluten connection more recently so I think going gluten free and low sugar and generally eating better foods that don't cause all this inflammation in my body is the last thing i need to crack !

[TSH110 in reply to Lozzer66]

Lozzer66 i found the headaches stopped once I got NDT dose right - I am a bit naughty for sugary coffee...even now, but no more headaches even so. Hope you manage to sort yours out.

[ChrisH100 in reply to TSH110]

Me too!! Thank you for your replies...

[Lozzer66 in reply to TSH110]

Thanks TSH110...I really hope this is my problem...there's just not been any let up whatsoever in last several years ..but when I look at all my bloods over last few years (whether on levothyroxine or ndt)I have never got optimal!..god knows I've tried/am trying lol!!

[TSH110 in reply to Lozzer66]

I used to find sniffing fresh root ginger helped a bit but soluable aspirin went down the hatch rather a lot. I think if you can get optimal you will feel tiptop. It can be a tiny amount that makes the difference. I am sure Ine person here said a difference of just 12mcg of Levo put them right. I remember I suddenly went from TSH of 4 to less than one with one increase in Levo dosage when I was being optimised at Guys. Good to do a very little at a time and let it settle for a while before any more changes.

[clubby29]

Hi,check out Sarah Balantyne. She done a book on it what it doesn't explain you probably don't need to know. I've been gluten free for a year now feel better but it takes time, lots of ducks to get in line with illness, also 20 kg lighter with no effort lol.

[ChrisH100 in reply to clubby29]

Thanks clubby - I've just downloaded. How long have you been diagnosed without th hash/been gluten free? Do you still exercise as I struggle nowadays....

[clubby29 in reply to ChrisH100]

Hi been ill for 3 years now done the normal gp thing, got nowhere so let google be my friend also found this group and started to learn. Many hours spent reading trying to figure it out. As many people will tell you on hear the vitamin and mineral thing is important and so is gut health. For me the gut health has been the hardest and still a work in progress. I seem to react to fermented food probably the histamine issue. The exercise thing is not so much of a problem because I am a scaffolder so don't have any need for gym work. Lol. Early on I had problems with work and had 3 months off, no energy or strength ,really bad brain fog , headache daily etc etc . I also have private blood tests with blue horizon to keep an eye on meds, I take t4 and t3 and I think the t3 has helped hugely in my recovery, but you do need it all working together. Adrenals hell we need a week for that one.lol

[Angel_of_the_North]

What's the harm in going gluten-free? Processed grains don't do anything positive for you, so why eat them? You can easily do without bread, cakes, biscuits and factory-made sauces. No need to buy expensive gluten-free alternatives, just read labesl and don't eat the stuff. Cottage cheese or a nice tuna salad has got to be a healthier lunch than a sandwich, and a hearty cooked breakfast will set you up better than cereal and toast.

[ChrisH100 in reply to Angel_of_the_North]

Totally agree angel of the north - I was doing gluten free before I saw my endo just surprised about the misadvice...

[Marz]

If you are on a phone - then scroll down and .... down until you come to the heading RELATED POSTS. There are 10 more posts similar to yours - so you will see you are not alone and may find some useful advice If you are on a PC the same heading is to the Right of your Post. Happy reading !

[ChrisH100 in reply to Marz]

Thanks Marz - I didn't realise it's so widespread and I'm not alone struggling with my symptoms....

[Marz in reply to ChrisH100]

healthunlocked.com/search/h...

... and if you type Hashimotos and Gluten - into the Search Box - you will find 8600 posts on the topic - so yes very widespread Click onto the link above !

[ChrisH100]

That's incredible....

[TSH110]

Try it and see if it makes you feel any better. I find it suits me.

[ChrisH100 in reply to TSH110]

Started this morning 😀 - what improvements did you feel tsh110?

[TSH110 in reply to ChrisH100]

I started NDT at the same time so I cannot be quite sure which did what but I had a lot less digestion problems, I lost the weight I had gained with hypothyroidism (c4 stone - I was a blob! Towards the end I felt constantly hungry and would eat 3 massive dinners and still feel completely famished it was just awful but the urge to eat was impossible to control like a desperation to survive I was very overtly hypo and lucky I got treatment in the nick of time. I had always been very careful about my diet and was a slim as a pin prior to becoming very ill so this uncontrolled eating was quite out of character) it took just a few months, yet on Levothyroxine I started running over 5 miles a day, but could not loose an ounce. I started to have more energy and my mind became more alert and less foggy. I slept like a log after dreadful insomnia. My depression of many years simply evaporated....and probably a lot more things too. My general health greatly improved and my quality of life was much better. I would never go back to gluten I look at the foods stuffed with it and think thank goodness I am not eating that anymore - it's so unhealthy! I guess my antithyroid antibodies have given up now but there are lots of other autoimmune diseases one might succumb to.i already have ankylosing spondylitis (seems to have gone into remission had that one early at 23) and possibly myasthenia gravis - some signs but not enough to give a positive diagnosis - if i do have it, it is not getting any worse. So I think a gluten free existence in my case is the prudent course of action.

[ChrisH100 in reply to TSH110]

I'm happy for you that you're now in such a better place health wise...it must have been a horrid time for you! How did you manage to get prescribed NDT or did you end up self-medicating....I don't think t4 is necessarily working for me as i don't feel any different. Coldness is the worst symptom for me - it comes and goes all over my body, and then I get burning feet! When they come It makes me feel no energy, tired, can't focus and cold and hot sweats. I just hope I have a similar outcome to you and know I need to be patient....

[TSH110 in reply to ChrisH100]

ChrisH100 I ended up self medicating on NDT. I was always frozen till I took NDT and felt warm for the first time in years it was heaven! I lie a little cos I also got hot and cold sweats especially after eating these have proven a lot more difficult to control. At the moment I have not had any but that is quite unusual even on NDT it is called gustatory sweating, apparently, and quite common in diabetics, my tests for that are ok. I understand it is the mitochondria in each cell of your body that generate energy falling in and out of balance making too little heat or too much and because they are in every cell the effect is immediate. It is supposed to be due to the thyroxine not being quite the right dose for them - pesky blighters! I also get the burning feet. Cyclists call it hot foot as they tend to get it on very long distance races like 24hr time trials which is the first time I remember suffering it. I still get phases of foot burn but at one time even standing used to exhaust me and my legs would hurt like hell. They make me very grumpy if they burn as I am on my feet all day long at work so I really don't need it. I buy new socks a lot I think it is some sort of psychological trick my brain plays on my feet to get themto behave - cosset them in double thickness antiblister super soft natural fibre deluxe cushioning socks! My sock drawer is stuffed to the gunnels!!

Funny we have so many shared symptoms 😜 I used to feel all alone with this disorder but not any more since coming here - we are manifold and today I feel like a twin!

I hope you find relief from them. I gave T4 two years which I felt was more than a fair crack at the whip but symptoms were still a wild horse. NDT tamed them rather quickly some symptoms took only a few days to start improving. Others took quite a lot longer and a few remain incalcitrant - my toe and finger nails are a horror story even after c3 years on NDT, but I consider every day a bonus and mostly I enjoy my life so I can live with a few niggles.

[ChrisH100 in reply to TSH110]

Your reply has given me comfort/hope....thank you!!!

[BeansMummy]

I don't trust endocrinologists for advice on dealing with Hashimoto's, so I certainly wouldn't trust their advice on diet. I don't eat gluten, my antibodies have reduced, and I feel better.

[ChrisH100]

Thanks beansmummy - are you symptom free...

[BeansMummy in reply to ChrisH100]

I had a host of gut issues, so gluten wasn’t my only challenge to be honest. All I know is that I did a major overhaul of my diet (under the guidance of a private nutritionist), and the change has been immense.

I had got to the point where I had to something to get my health back. Giving up gluten was recommended by many people, and I had nothing to lose. Gut health is so important for us though, and I still follow a pretty strict diet; I later added T3 to my prescribed levothyroxine, and that was another life-changer.

[ChrisH100]

Hello all - I'm struggling to understand why my TSH has only come down slightly (from 5.2 to 4.3) even though I've been on thyroxin since Feb (working up from 25 mg to 125mg) - is my thyroid so badly damaged due to hash or is there something else going on - calling out to see if anybody else has had a similar experience?

Thanks as alaways, Chris