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Thyroid UK
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Hashimotos - anyone get gut problems - not constipation

Hi, for many years I've suffered from what Drs said sounded like food intolerance. Approximately every month or so I used to suffer from a bout of cramps in my bowel, followed by diarrhoea, sometimes vomiting. At my worst it was accompanied by cold sweats and almost passing out. It all only lasted for about 30 minutes then I was ok again.

Two years ago I was diagnosed with Hashimotos and put on 25mcg levothyroxine, increased to 50 mcg after about a year. I've been feeling very tired, weak legs and depression/anxiousness recently and now my gut problems have returned. As soon as I was prescribed Levothyroxine my gut problems cleared up which lead me to believe it was thyroid problems all along and now it's returned I think maybe I need more levothyroxine.

Has anyone else had this problem?

37 Replies
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I think it's pretty certain that you need an increase in dose. 50 mcg is only a starter dose. Did your doctor not tell you to go back for a retest after six week?

Your problems could very well be due to under-medication.

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Hi grey goose, thank you so much for replying. I asked for a thyroid blood test last week and was told the GP advised that I could only now have a six monthly test and if I had problems to see her. I've made an appointment but it's 7 days off. I just feel like crying in case she lets me have a blood test and it comes back as ok and she won't increase my dose.

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I don't think your doctor knows an awful lot about thyroid, does she. The protocol is to retest six weeks after starting a new dose. And that is absolutely imperative. Six months is just too long. She is not following NICE guidelines - and they're bad enough! She needs reminding of how it's done!

'OK' is an opinion, not scientific fact. Make sure you get a print-out of your results - don't accept a verbal muttering of them, or a scrawl on a scrap of paper, it's all too easy for 'mistakes' to creep in, that way. You want a print-out with results and ranges. The law says you're entitled to it. The, post them on here, with the ranges, and let's have a look. :)

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Thank you grey goose I'll get a printout when I hopefully get another blood test

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You're welcome. :)

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Out of interest what is the law please?. I am struggling to get my docs to take full bloods for me. I am desp for full thy count before my full thyriodectomy on 25th Feb

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Good lord! You're having a full TT without full labs? Why did you agree to it?

The law says nothing about what should be tested, as far as I know, only that you are entitled to a print-out of the results. What gets tested is down to the labs, they have the final say, unfortunately. Even if the doctor orders certain tests, the lab can veto them. It could only happen under the NHS!

Have you considered getting private labs? Details here:

thyroiduk.org/tuk/testing/p...

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Hi Janspenc

I have Hashimoto’s and an underactive Thyroid.

Before I had my diagnosis of underactive Thyroid and put on Levothyroxine.

I decided to go gluten free, I suffered terrible tummy cramps, bloating, but I suffered constipation rather than diarrhoea.

Immediately after going gluten free I was no longer waking up bloated and felt so much better than I’m still gluten free and will never go back to eating gluten.

It is advised if you have Hashimoto’s to go gluten free and if you can dairy free. I tried dairy as well but, didn’t feel any benefit.

The other day, I was glutened, I took a chocolate sample and did ask if it was gluten free, the lady hesitated then said yes. I should of known better, a few hours later my tummy was popping, I had major cramps and could stand up straight, I had a splitting headache as well. I was in bed the next day too.

25mcg of Levothyroxine is a very low starter dosage and normally you start on 50mcg of Levothyroxine, unless your elderly or have heart conditions.

You then increase your Levothyroxine by 25mcg every 6-8 weeks testing TSH, T3 & T4.

Your GP should not of left you on 50mcg for a year.

Have you got any of your thyroid blood results that you can post on here.

Best Wishes

Peanut31

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Hi Peanut, thank you for replying. I'll ask for my results if my GP agrees to a blood test a week on Monday. My last blood test 3 months ago according to my GP didn't need an increase in levothyroxine.

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Hi Janspenc

You are entitled to a copy of your blood results by law.

You don’t need to see your GP to obtain a copy, ask the receptionist and don’t accept then handwritten or be fobbed off.

You want the lab copies including lab ranges, once you have them do a new post and members can advise.

Just because your GP say you don’t need an increase, doesn’t mean he knows what he talking about, I bet you do need an increase.

You really need you blood tests though.

Make sure you book your blood test first thing in the morning before 9am and don’t take your Levothyroxine that morning, no eating and drink water only.

Why? Well we offer this tip to all members on here and ask that you don’t share this advice with your GP/nurse/Endocrinologist.

Your TSH is always high in the morning and this will help you obtain an increase in your Levothyroxine without having to put up a fight for it, that’s if your GP knows what they are doing.

For you to feel well it’s advised your TSH should be around 1 or below and your T4 and T3 in the higher figures of the lab ranges.

Don’t let your GP keep you on a low dosage and blame other illness.

Best wishes

Peanut31

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Thank you peanut - I've also got Sjogrens Syndrome so it's hard for me to judge what's what, however I do know that after many years I've even free of gut problems since taking levothyroxine until now

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I had really similar symptoms to you before being diagnosed. The stomach pains, bloating and diarrhoea. Thankfully it has pretty much stopped since being medicated.

It was actually a eating a doughnut before getting on a plane and then crying the whole flight because of the pain that forced me to go to the doctors after years of suffering.

Fingers crossed your GP will test you again, if not would medichecks be an option? X

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Hi Suzannah, thank you for replying. It must've been awful, stuck on a plane, one of my dreads. The cramps in the lower part of my abdomen are agony - no wonder you were in tears. I've suffered with this for many years before diagnosis of Hashimotos, even though my thyroid was checked annually as part of my Sjogrens check up, it took many years to show up as underactive. I know it must be caused by my thyroid as it stopped even on 25mcg Levothyroxine, but I've been on 50mcg for about 9 months and it's just returned much to my dismay.

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Please get a copy of your results from 3 months ago (just because doc says they're ok doesn't mean they are) and post them here. People on here can give you advice based on those whether doc agrees to further blood tests or not. When bloods are 'in range' in docs opinion, many people still have symptoms and feel very unwell.

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Hi AnneEvo, thank you for taking the time to help. I've got to wait till next Monday for an appointment and will ask for a printout then and post them here - it's scarey that we can't rely on our GP's but I suppose they're a 'jack of all trades' and seem to think they can easily medicate us, when it's far more complicated. My dear mum who passed away 12 years ago went through exactly the same so things haven't improved one bit! Mum saw a private Endocrinologist, but still was never well. I now know what she went through.

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If the sample was from a stand in a supermarket I'd go back and threaten to sue the person who gave you the wrong information, and also complain to the supermarket - they might pay you off! People just don't take it seriously.

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Something almost identical used to happen to me. It’s now been years since I’ve had it happen (thank goodness. I ended up in hospital once because it happened in the middle of a park, and once I ended up lying on the floor of the toilets at Birmingham New Street waiting for it to pass :-o ). I wouldn’t say it passed within 30 minutes - more like an hour to 90 minutes but it does sound so very similar, what you describe.

I now take Nature Throid but I also went gluten free a few years ago too and I’ve discovered I’m very gluten sensitive. So I don’t know which solved the problem - perhaps a combination of both.

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Thank you jazzw, before I took levothyroxine I really felt as if I was going to die during one of these episodes - you're right I think they used to last longer - maybe taking levothyroxine even at low dose eased my symptoms last night - didn't feel quite as out of control with pain, passing out but I'm so depressed at the return of this dreaded gut problem. I'm sure you understand - I'd eaten pizza and had red wine, which is probably when it used to happen, however it hasn't been triggered by either whilst I've been on levothyroxine until now. By the way I really sympathise with your experiences and have been lucky my episodes have happened at home

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It’s grim, isn’t it? It might be well worth considering going gluten free, just to see. I do also think that a raise in Levo would help though - let’s face it, it helps with everything! - because 50mcg isn’t a very big dose at all.

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Hi Jazzw, it's a really scary episode and only someone like you who've through similar can understand. I think an increase in levothyroxine is the answer as it stopped when I started taking it. I'm just dreading my GP saying I don't need an increase as it didn't show up on blood tests for years so they're not very accurate or the interiptation of them is wrong. My diagnosis was only made through my annual Sjogrens blood test results as no connection with gut problems was ever made with thyroid imbalance. It doesn't seem to be a very common underactive thyroid problem so I'm glad you understand

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Hi Jazzw, I forgot to ask - what is Nature Thyroid and how do you obtain it?

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Where do you get Nature throid?

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50mcg Levothyroxine is only a starter dose

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if been under treated too long

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Dose of Levothyroxine should be increased slowly in 25mcg steps until TSH is under 2. Most patients need TSH around one and FT4 in top third of range

Vitamins often need supplementing to maintain optimal levels

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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Hi SlowDragon, GP did test for antibodies and they were found. I've made a note if vitaminD etc and will ask her if these have been tested for. I was hoping my last blood test three months go would lead to an increase in levothyroxine but apparently not, leaving me gradually feeling worse. I just hope my next one will lead to an increase. Thank you for your kind help

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First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Find out EXACTLY what has been tested and more important what hasn't been tested

Get missing tests privately

If your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy online for under £20 just to rule it out

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

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

thyroidpharmacist.com/artic...

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Hi Jan whenever I'm under medicated I experience gut issues where I feel sick and my appetite disappears - that is despite being on a gluten free diet. The thyroid drives your metabolism so it makes sense that you experience gut issues. I think you have to tune in to your own symptoms and discuss with your GP. You have to get onto a dose that works for you and it can take quite some time and many ups and downs to balance things out. I'm still struggling to get balanced after 4 years - I'm much better but just recently my GP reduced my levothyoixine and I've slowly gone slightly hypo so I need to increase my meds a little.

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Hi littlebee, thank you for your advice - I'm seeing my gp next Monday and have a list of symptoms. I feel really weepy and down too

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Hi jan

Im sorry havnt read all posts due to time but do sympathise it took me long time to get over gp lack of knowledge and understanding, it felt quite scary in fact, but from tuk and a private doc i came to just getting on with it myself moreso as was banging head on brick wall mostly, so set about healing gut and decent probiotic for bacteria which really really helped, my antibodies reduced by gf too ( for me id had longterm years of stress so supported adrenals too, all in same loop). The vitamins high up there too

You can always get a full blood panel done privately if a possibility

Sorry if repeating. 🦋

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Hi Jeppy, thank you for your advice. I think such an important disease as Hashimotos should be treated more seriously, I just don't think the medical profession know enough. Years before I was diagnosed, not only did I suffer the gut problems but I developed xanthelasmas around my eyes, despite low cholesterol. I saw a heart Specialist as I was getting an irregular heartbeat and chest pains. My heart and arteries were ok so it was left there. When I saw a skin specialist a few years later he said the xanthelasmas were caused by an underactive thyroid. Nobody had ever made the link and nothing had showed up on blood tests. I was offered statins originally for the xanthelasmas, which was totally the wrong treatment.

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I to have xalanthi on one eye, but my cholesterol is really high.

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Hi I had two removed from around one eye - it wasn't as bad as I expected and well worth it - acid which after 10 days had scabbed over and fallen off - job done!

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Yes! Gut issues and constipation are very common with Hashimoto's. You have to have gut permeability or leaky gut wall to develop hashimoto's and normally that's caused by a food sensitivity. Gluten and dairy and the most common ones that you need to completely cut out. Your body sees gluten as the same protein that your thyroid is made of and will make your immune systme continue to attack your thyroid. You are having to increase your meds because over time your body os killing more and more of your thyroid. The only way to actually heal yourself is to change your lifestyle. The Meds are like filling a bucket with whole in it. I recomend looking up Dr. Izabella Wentz. She specializes in hashimoto's and wrote a few books. Hashimoto's protocol walks you through healing your liver, gut and adrenals in 90 days to put you into remission from hashimoto's. Its empowering to see th changes! My friend just went from. TSH of 10 to .37. Good luck!!

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Hi thank you very much for explaining that to me - I can now see the relevance of cutting out certain foods. I'm going to look on Amazon for Dr Wentz books

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.. smashing advice there

We Can!!! 😊

...yes it's sad that we have to go to these lengths, I too had villigi Psirosis. pre eclampsia allergies etc and no dots were drawn at any time with anything

At least we can rest in the fact we can now get well

Docs are maybe more in know (a few maybe ) but they do their job basically, they have strict rulings I gather and to some extent hands are tied, just so upsetting and frustrating

I read S Myhill sorry if have said that and Isabella, Dr Bergman on u tube has some good insights I think for understandings

No it's not just about blood numbers, it's the whole thing, blood tests are good to see if we are going the right way,:). Lots of good luck, heal gut, good products out there, gf, diet and vits. I'm just glad I know now, I crawled upstairs initially over a year ago and did the memory walk before Christmas. Xx

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U tube videos are also short and can be helpful

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Sounds like you dosage is not right, see you GP for retest.

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Hi, yes I'm going next Monday - very tearful too feel so down

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