Hashimotos & Gluten Free : hi all, I have... - Thyroid UK

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Hashimotos & Gluten Free

21 Replies

hi all,

I have hashimotos/under active thyroid and have heard the benefits of going gluten free. I have occasional bloating but not many gut issues as such, my symptoms are more brain fog and fatigue. All my thyroid tests are optimal and in range so I’m thinking of trying a gluten free diet. Can anyone give me any positive stories for eliminating brain fog etc with a gluten free diet?

(no negative stories please!!)

Thank you x

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21 Replies
SlowDragon profile image
SlowDragonAdministrator

Post discussing gluten

healthunlocked.com/thyroidu...

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Sleepman profile image
Sleepman

Sorry your not feeling well. GF worth a try or it could be thyroid issue is not treated properly yet. It is so slow to get right.

You are not yet on full dose by they looks of your recent blood results. I would repost those results and get advice on them and when to increase. It is such a busy forum - you have to do this sometimes. If you read on here you will see all the advice about getting B12, D and folate and ferritin at optimum levels.

Back to gluten ...

If I take gluten accidentally now symptoms ae brain fog and fatigue more than gut.

I am autoimmune under active thyroid like you. I did not test positive for Celiac on blood test, but I am gluten intolerant. I went gf a year before finding out about thyroid, I had gut issues then.

I would say do not spend loads of money on gf baked goods, Try doing without them. I find them not nice and they have a lot of added ingredients.

I eat more rice and corn and beans. Stews and veggies

Indian food is generally clean. Soy sauce in Chinese food is an problem - we have gf soy at home. Be careful with vinegar.

Wine cider and spirits are OK for grog. A lot of gf beer is chemically treated to take gluten out, I am ok with some but tend to avoid them now.

tattybogle profile image
tattybogle

Your recent TSH was nearer 3 than 2 wasn't it? ,and T4 lowish too , so thyroid results are 'in range' , but not 'optimal'.

GP's who think TSH over 2 is optimal need to be given some of these references to look at (all recommend GP's keep TSH between 0.4/0.5 and 2/2.5 for optimal treatment in all patients on levo, some of them were written specifically to advise NHS GP's) :

healthunlocked.com/thyroidu.... -list-of-references-recommending-gps-keep-tsh-lower-in-range-

in reply totattybogle

I’ve been back to 3 seperate GP’s and they’ve all refused my request to increase my dosage but I still feel rotten everyday. Any advice on how to get them to increase it? X

SlowDragon profile image
SlowDragonAdministrator in reply to

This is not a rare disease

There’s around 2 million people in U.K. on levothyroxine, roughly 90% are female

It however seems increasingly rare that it’s well managed at primary care level

They aren’t even following guidelines

Print out these links below

Make another appointment. Request “trial “ increase in Levo

If they still refuse to increase insist on a referral to endocrinologist of your choice ….or say you will be seeing one privately

NHS referral’s are currently at least a year ….or longer ….so realistically it’s private option initially

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

in reply toSlowDragon

Thank you! I was made to feel like I was a burden for having symptoms. I’m not making it up! I genuinely do feel rotten. Will ask for a trial of 75mcg tomorrow first thing!! X

SlowDragon profile image
SlowDragonAdministrator in reply to

Which brand levothyroxine are you currently taking

Avoid changing brand and dose at same time

in reply toSlowDragon

It just says levothyroxine sodium 50mcg on my prescription slip x

SlowDragon profile image
SlowDragonAdministrator in reply to

What is name on box of levothyroxine

Generally brand is not specified on prescription unless you request it

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets.

Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

New brand….just available July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

in reply toSlowDragon

It’s the accord that I’m taking 50MCG

SlowDragon profile image
SlowDragonAdministrator in reply to

So Accord don’t make 25mcg

You could try 25mcg by Mercury Pharma or by Wockhardt

avoid Teva brand

Or request extra 50mcg tablets on prescription to stay on Accord and cut in half to get 25mcg

in reply toSlowDragon

Would you recommend staying on the same brand if increasing? X

SlowDragon profile image
SlowDragonAdministrator in reply to

Ideally only change one thing at a time…..so yes

But if GP or pharmacy difficult you may have to be pragmatic

Just avoid Teva brand as it upsets so many people

in reply toSlowDragon

Managed to get 75mcg!!! But they did say that I need to take it first thing in the morning I’ve been taking it at night!! X

helvella profile image
helvellaAdministrator in reply to

I suspect they are just quoting and have not actual basis for telling you to change time at which you take it.

helvella - Bed-time dosing of levothyroxine

Discussion about taking levothyroxine at bed-time. Several linked references to relevant papers.

helvella.blogspot.com/p/hel...

RedApple profile image
RedAppleAdministrator in reply to

You absolutely do NOT NEED to take it first thing in the morning! You can take it at any time of the day that works for you, as long as you stick with the food and drink timing rule, and keep reasonably consistent with time of day.

Some people actually split dose their levo. e.g. half the dose in the morning, the other half at bedtime.

in reply toRedApple

I have a lot of brain fog so he advised to take it at night to help ease the brain fog during the day? X

RedApple profile image
RedAppleAdministrator in reply to

That's a new one, never heard of that before! Brain fog usually improves when your thyroid hormone levels are optimal. Time of day that you take it isn't going to make a big enough diffrence if you're not on the right dose.

in reply toRedApple

I thought the same, to be honest I don’t know who to believe or trust these days x

RedApple profile image
RedAppleAdministrator in reply to

Long time members of this forum have collectively far more knowledge, understanding and experience than the vast majority of doctors. :)

in reply toRedApple

I agree! So when you say remember the food and drink rules around when to take the tablet, if I take it at night do I need to wait one hour after food/drink before taking it? X

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