Help with Hashimotos: Does anyone have experience... - Thyroid UK

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Help with Hashimotos

exexpat profile image
21 Replies

Does anyone have experience of just eliminating that which they are intolerant to and putting Hashimotos into remission?

Any Hashimotos support groups out there please?

Been on Thyroxine since Aug 22.

12 months later I learned that my low Thyroid is in fact Hashimotos.

I feel I am getting nowhere. Just gaining weight. Not sleeping well.

Struggling to follow all the advice to eliminate gluten, dairy, soy, corn, caffeine, alcohol. nightshades, legumes, seed oils, toxins in my environment (BPA, plastic, perfumes, cleaning products) etc etc especially when I feel that my real trigger is stress (and having to eliminate so many things just adds to the stress).

The only food I am aware I am intolerant to is milk protein so dairy.

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exexpat profile image
exexpat
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21 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start.

With Hashimoto's the thyroid gland is slowly destroyed, such that once your levels of thyroid hormone have become so low that you need replacement hormones then there is no going back. It is not possible to heal the thyroid.

Often members are left on too low a dose of Levo, they hve low or dficient vitamin levels which mean that they cannot use their thyroid hormone properly. Its possible also that you may not be converting Levo to the active thyroid hormone T3 which the NHS never look at.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

You can contact Thyroid UK for information about support groups. thyroiduk.org/help-and-supp...

waveylines profile image
waveylines

Eliminating food intolerance will not stop the Hashi.... Or cure it. But it does help to calm the system down & therefore may slow progression.Of course if you are not intolerant to any of these things it won't help. You say dairy is what you are intolerant to....

There is a lot of advice out there... You just have to cherry pick what is appropriate for you.

What is important is getting your B12, ferritin, folate & vit D optimal (not just in range) and making sure you have an optimal dose to address your low thyroid hormones. To check for this you need TSH, Ft4 & Ft3 tested. GPs often only check TSH which is Thyroid Stimulating Hormone not a thyroid hormones. Ft4 & Ft3 are the tests for thyroid hormones.

greygoose profile image
greygoose

You don't have to eliminate all that - what would you eat if you did? You'd have such a limited diet that you'd probably be deficient in a lot of nutrients.

The think to do is try eliminating one at a time, see if it helps. You already know about dairy, so the next thing to try is going gluten-free for a few months, see if that helps any of your symptoms. If it doesn't, start eating it again, and see if things get worse. That way, you will either be able to cross gluten off the list or know that you're gluten intolerant.

Sometimes people go over-board with telling you to cut out this, that and the other. And not everybody is sensitive to everything just because they have Hashi's. One thing, though, that is best avoided, is unfermented soy. That can have an effecto the absorbtion of thyroid hormones at a cellular level. So, you have good levels in the blood but it can't get into the cells. Plus soy has all sorts of other disadvantages. Best avoided. :)

exexpat profile image
exexpat in reply to greygoose

Many thanks. You're right. Not much left. Hence my struggle. Who wouldn't struggle? Noted re Soy. My intolerance tests (IgG I think) have always said I am OK with gluten. Can I rely on those test results and not eliminate gluten? Just dairy is consistently a problem.

I've been gluten and dairy free for a while but my most obvious / annoying symptom is weight gain so it takes ages to know if anything is working. I know I'm lucky not to have worse flare ups.

My sleep is better/worse some days. Maybe I should track sleep quality more closely?

greygoose profile image
greygoose in reply to exexpat

Sleep can be affected by so many things. Bad sleep is not always a hypo symptom so not sure tracking it would help.

I have no idea if you can rely on those tests, I've never had one. But I don't think weight gain has anything to do with gluten. It's a hypo symptom, and is probably due to water-retention, rather than fat. So, perhaps being gluten-free isn't doing anything for you.

All I know is that cutting out gluten, dairy, sugar, nightshades didn't do anything for me. The only thing that has made a difference is avoiding soy like the plague!

As for alcohol, I've never been a big drinker, but I used to like a couple of gin and tonics on high days and holidays. Now, I can only manage one! lol

Neet62 profile image
Neet62 in reply to exexpat

Hi there! I’ve managed Hashi’s for a few years now and the only food I have a problem with is white and wholemeal breads. I’m ok with pasta etc so now eat breads made with spelt flour and it’s worked well thus far. I take a strong B complex every day, together with 4,000 iu D3 (with K2) and I’ve recently added magnesium and zinc. I had to battle with my GP to increase my Levo as I’ve learned to rely on symptoms rather than blood results. I therefore take between 125 & 150mcg, depending on symptoms. It’s not easy, and learning to listen to my body has been tough at times, but this forum has been invaluable to me; good luck!

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking

Do you always get same brand

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests

Please add most recent results and ranges including vitamin D, folate, ferritin and B12 if you have them

By the time we get diagnosed thyroid is usually already damaged and therefore very unlikely to recover

Always worth trying gluten free diet too, as well as dairy free

But get coeliac blood test first

exexpat profile image
exexpat in reply to SlowDragon

Thank you. Yes always same brand: Euthyrox.

Dose has been slowly increasing from 25 microg a day to 50 mcg 2 days a week, 25 mcg the rest, then 50 mcg 3 x week, now 50 mcg 4 x week and 25 mcg 3 x a week.

My Thyroid tests have always been early morning fasting BUT I have always had my Thyroxine tablet before my test. Thanks for patient to patient tip re not taking my Thyroxine pre-test.

Most recent results not available BUT I know last time I showed low Vit D and low iron.

Thanks for tip re Gluten and dairy. So if my Coeliac test is negative I can have gluten even with Hashimotos? My various intolerance tests always say Gluten is ok / not an issue for me. Dairy is always a problem. That is an IgG test

SlowDragon profile image
SlowDragonAdministrator in reply to exexpat

50 mcg 4 x week and 25 mcg 3 x a week

Well that’s a tiny dose

Standard STARTER dose is 50mcg daily unless over 65 years old

And dose is increased upwards from that over 6-12 months

What were your thyroid results BEFORE starting on Euthyrox

Approximately how old are you

Bloods should be retested 6-8 weeks after each dose increase. Normally dose is increased in 25mcg steps, occasionally in 12.5mcg steps

exexpat profile image
exexpat in reply to SlowDragon

Good to know.

I am in my mid-fifties. TBH I hate to admit it but I don't recall what my Thyroid levels were when first diagnosed. My record keeping is non-existent. I split my time between Europe and Asia and the travelling plays havoc with my life / stress levels / medical care. Hubby works overseas. Kids all at Uni in the UK

SlowDragon profile image
SlowDragonAdministrator in reply to exexpat

First step is to get FULL thyroid and vitamin testing 6-8 weeks after latest dose increase in levothyroxine

And get hold of all your historic test results and ranges

Do you come to U.K.?

approximately how much do you weigh in kilo

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

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

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.

I dont think I've ever seen advice on here telling Hashis to cut out that very long list of things lol. The only ones I see consistently suggested are gluten and if still symptomatic, dairy. And not everyone will find either helpful but they can be worth a try.

Caffeine is an issue if you drink it within an hour of thyroid meds but other than that is OK if you like it and don't have a problem with insomnia. No idea about booze as I'm teetotal. Frankly I think anyone would feel stressed living like that 😁 Maybe cut yourself some slack.

exexpat profile image
exexpat in reply to Sparklingsunshine

Thank you. This advice about eliminating so many foods/toxins etc is in all 3 books I've read. Thank you for mentioning the caffeine timing issue (I had read that too) but TBH dropping the caffeine is the easiest thing for me. Slack-cutting suggestion much appreciated and very welcome.

Sparklingsunshine profile image
Sparklingsunshine in reply to exexpat

You are most welcome, also my other point is that cutting so much out at once means you wont know what's working and what isnt. Probably better to try eliminating or reducing to one thing at a time, see if it helps, if not then its not an issue for you and you can move on to the next thing.

Striving for good health is very commendable and I admire your commitment but life also needs to be enjoyable and stress is probably a much bigger threat than coffee or a glass of wine 😆

SmallBlueThing profile image
SmallBlueThing in reply to exexpat

A problem with best seller type books is that other authors want a piece of the winning formula, so the market fills with similar (dis)information. And then the original author will write a variation of their earlier successful title, to add to the pile.

Anecdotal reports of food intolerances are unlikely to have a bearing on most others, as most people can consume most foods, without any issues, if they don't overdo it. Alcohol is about the only thing the medics (some of them) advise to avoid, completely.

Petrahorse profile image
Petrahorse

Hi exexpat

I completely understand where you are coming from! I am a Hashimoto sufferer too, diagnosed 2020, but probably suffered for many years. I have been on 50mcg Thyroxine for not very long ( approx 18 months) and I have done my best to eliminate gluten, caffeine and alcohol as much as possible. I’m ok with dairy but gluten and caffeine definitely make me tired and give me headaches, if I have them for a few days and then stop.

It feels a bit like nothing makes me feel better and my body is becoming so ‘clean’ that I react badly to things that before I would feel fine with ☹️

Also like you I feel the one thing that can definitely make me feel worse very quickly is stress. Seems very difficult to live without stress! I am on supplements of magnesium, vit b complex, k2 and selenium which has helped me, also on natural progesterone and oestrogen - small doses which has helped with sleep and energy but the mood swings still plague me a bit.

I’ve not heard of any support groups. Let me know if you find one!

Watamu profile image
Watamu

Hi Expat I can relate to your problems after resisting going onto any sort of elimination regime I decided to try gluten free diet but I am finding that I am causing more problems than I had already. Trying to get to grips with gluten free flour to make bread and finding that they include axanthan gum which I think is causing stomach issues. I have also recently found out that Teva can mess with the gut biome and also is a diuretic, am now on accord since I increased to 100mcg from 75/100 alternate days. I also have a problem with histamine, so between the glutten free and watching foods with high histamin I also feel that there is very little choice of foods left which is also stressing me out. Some days I just can't be bothered to think about what to eat so resort to things like chips and fried egg.

Enuffisenuf profile image
Enuffisenuf in reply to Watamu

I'd kill for egg & chips! 😋

Watamu profile image
Watamu

I was diagnosed with hashimotos in 2020. Stress was a big factor with me. Anti bodies over 1,3000 , so much so that I was dreading my sons wedding last July, having to meet and mix with so many people. During Covid I was happy to not mix at all so it came and went without me noticing it. My recent antibody test has dropped to 0.4. I use essential oils a lot, carry a roll on for stress relief and lavender roll on next to the bed for wakeful nights. They work for me. If not, I just read or watch TV in bed. Don't worry about not being able to get back to sleep it just makes things worse. I used to count how many hours sleep I'd had at four in the morning. I'm fortunate in that I am now retired so don't have to worry about work in the morning any more, tho I do run two businesses from home, but can work it around to suit me. My plan is to get all my vits up to scratch and if I still have symptoms then will increase my Levo further, if still symptoms will probably have to battle to get some T3 but that's another story. The lovely people on this forum have helped me a lot, I have learnt so much since joining last year, how the thyroid works (previous to my diagnosis I didn't even know where the thyroid was) I'm sure you will feel a lot less stressed when you learn to advocate for yourself with the help of the forum. Best wishes.

tattybogle profile image
tattybogle

if it helps to keep thing in perspective .... even if you do 'nothing' , your antibodies will probably go down over time ( with some ups and downs along the way )

When diagnosed in 2003 my TPOab were 2499 [0-50 then > 3000 [0-50] 7 wks later .

i have not removed anything from my diet since then , still eat gluten, still have real coffee with sugar in it , still smoke a roll up after dinner , still eat cruciferous veg , and anything else i fancy as long as it's real whole food and not overprocessed junk , and occasionally , i do eat overprocessed junk too.

in 2017 my TPOab were 195 [0-50]

This is not a recommendation to eat gluten , sugar , (or smoke a fag) ... but just to show that removing them is not a prerequisite to get TPOab to go down.

LDN can reduce inflammation and thyroid antibodies

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