Is this thyroid ,bowels or something else - Thyroid UK

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Is this thyroid ,bowels or something else

Janeylou69 profile image
48 Replies

I've been having these problems for a couple of years ,I'm hypothyroid, I have loose bowels but it's not all the time ,weight loss ,lethargic ,so tired that I feel horrible ,,im in pain all over ,every joint in my body hurts ,my stomachs not right, I'm still so depressed ,I have high blood pressure and slightly high cholesterol, my vitamins are low but I'm slowly taking tablets for vit d and I'm iron deficient, it feels like my life is over ,I'm also waiting to have an ultrasound scan on my bowel ,coz I previously has a high calprotectin test which went down a bit ,they mentioned looking for chrohns disease ,my last blood test ,there wasn't any inflammation but obviously iron deficiency ,I am so unhappy at the moment, I never seem to feel well coz I'm always drained ,is this symptoms of iron deficiency ,I am also on b12 injections ,I'm just confused about weight loss coz normally being hypothyroid you can't lose weight thanks for any help xx

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48 Replies
jimh111 profile image
jimh111

About 10% of hypothyroids lose weight although in your case it is more likely due to gut problems and you should have this followed up by a gastroenterologist.

Janeylou69 profile image
Janeylou69 in reply tojimh111

Hi my doctor has been communicating with the gastroentologist and because I had a colonscopy a few years ago so they didn't see it necessary to do another so they decided to do a bowel ultrasound scan which I'm waiting to have done , so I've no clue what is going on with me thanks for your reply .

Beefull8 profile image
Beefull8 in reply toJaneylou69

This might not be the right issue but have you ever checked your pancreas? I have similar issues and just found out my pancreas isn’t making enough enzymes. This can lead to malnutrition and fatigue. I’m sure your gastro has checked for it but thought I’d mention it just in case.

Janeylou69 profile image
Janeylou69 in reply toBeefull8

Hi im not sure if my doctor has checked for the pancreas but every blood test I have ,it's mainly iron ,and vit d that's low , my inflammation markers are always ok ,but it's definately something I will ask my doctor about thanks for your reply x

Megams profile image
Megams in reply toBeefull8

~Good mentioning this important factor Beefull8 - after a biopsy of jejunum when checking for Celiac I was found to be deficient in certain enzymes + maltase which is rare. Malabsorption can be a big factor in how well we are.

Valerie0106 profile image
Valerie0106 in reply toJaneylou69

A colonoscopy isn’t alwsys right. I had a fast referral in 2019 due to blood loss but was told I just had diverticulae. I had a dreadful time in lockdown in 2020 with months of full blown symptoms and eventually got another referral through an assessment unit and was diagnosed with Ulcerative Colitis. Also blood tests and fecal calprotectin results don’t always accord with symptoms. Just something to bear in mind.

SlowDragon profile image
SlowDragonAdministrator

previous post 3 months ago

healthunlocked.com/thyroidu...

Presumably GP has by now tested you for coeliac disease

If not get tested BEFORE trying strictly gluten free diet

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

what are your most recent thyroid results and ranges

ESSENTIAL to retest vitamin levels regularly

What were last vitamin D, folate, ferritin and B12 results

Exactly what vitamin supplements are you currently taking

Are you on dairy free diet too?

Janeylou69 profile image
Janeylou69 in reply toSlowDragon

Hi slowdragon ,I've been tested for coeliac disease quite a few times ,it comes back negative and I have tried ,dairy free ,I'm on the same brand levo ,it's never been changed ,I'm on vit d tablets and iron tablets ,I feel so tired and rubbish and I don't sleep great as well ,it's been a while since they tested my tsh ,thanks for your reply .

SlowDragon profile image
SlowDragonAdministrator in reply toJaneylou69

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

Low vitamin levels affect Thyroid hormone working 

So it’s essential to improve all four to GOOD Levels and most importantly keep them at good levels

NHS only tests and treats vitamin deficiencies

Down to us to self supplement to maintain good vitamin levels

Poor gut function with Hashimoto’s 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 frequently 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 

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

Hashimoto’s and leaky gut often occur together

SlowDragon profile image
SlowDragonAdministrator in reply toJaneylou69

I'm on vit d tablets and iron tablets ,I feel so tired and rubbish and I don't sleep great as well ,it's been a while since they tested my tsh 

Just testing TSH is completely inadequate

Essential to test TSH, Ft4 and Ft3 together

ALWAYS test early morning and last dose levothyroxine 24 hours before test

How much levothyroxine are you taking

And which brand of levothyroxine and is it always same brand

Many people find different brands are not interchangeable

Exactly how much vitamin D are you taking

When was vitamin D last tested

Test twice year when supplementing

Once year via Medichecks or Blue horizon or Monitor My Health…..along with thyroid

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Just Thyroid includes BOTH TPO and TG antibodies -£49

randoxhealth.com/at-home/Th...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

are you currently taking any Vitamin B complex or B12

When were folate and B12 last tested

Ferritin and iron should be tested by GP every 4-5 months if on iron supplements

Ferritin at least over 70ug/L minimum and around 100ug/L likely better

healthunlocked.com/thyroidu...

Janeylou69 profile image
Janeylou69 in reply toSlowDragon

Hi I would like my doctors to test ft3 and ft4 but the labs won't test them so I think I will definitely have to do a private test thankyou

Sleepman profile image
Sleepman

I did not show positive for Celiac on blood tests but I am definitely gluten intolerant.(I am hypo too). I am a lot better completely without gluten.

Janeylou69 profile image
Janeylou69 in reply toSleepman

I will try gluten free but I've heard it's quite expensive to buy on supermarkets thanks for your reply .

Ratherbegardening profile image
Ratherbegardening in reply toJaneylou69

Like Sleepman, I also did not test positive for Coeliac, but after years of being told my gut problems were IBS, and with each year my stools got looser, I decided I had to consider diet! Cut out dairy which cut stomach pain down a lot, then cut out gluten. It's taken a long time being gluten free before my guts finally are approaching 'normality' for me. Yes GF foods are expensive, (and some of them are awful) and it can be really depressing trying to figure out what you can eat, as once you start reading food labels, you realise lots of things contain it. My advice would be to not try to do GF versions of everything you would normally eat, but change your diet a bit, eat more potatoes and rice, find a GF pasta you like (usually the expensive ones) but have it as a treat, do things like stir fries with rice noodles (watch for GF soy sauce!) The breads that look that best are often the worst tasting, toasting it almost always improves it. Look for reduced price GF breads as you can freeze them, and try them without spending a ton of money. If you can eat oats, they can be fantastic (sadly I can't, even GF ones)- oat cakes (like crackers) make an easy snack/lunch and many good GF biscuits are oat based. Hope you start to feel better soon!

Janeylou69 profile image
Janeylou69 in reply toRatherbegardening

Thsnkyou I do like stir-frys ,do you cook them in normal oil ,I will have to give it a go and noodles ,what about homemade gf food ,does it taste any better xx thanks for your reply xx

Ratherbegardening profile image
Ratherbegardening in reply toJaneylou69

Yes, use your usual oil, or with a bit of sesame oil added makes it tasty. What do you mean by homemade gf food? I cook everything from scratch anyway. Have found some of the american gf baking recipes have not been good. But will message you a gf banana cake recipe that is a winner every time, later though, I'm off out for a jolly!😁 Also curries made with coconut milk are easy peasy if you are dairy free as well as gf.

Megams profile image
Megams in reply toJaneylou69

~No I think that is a myth Janeylou69 - going gluten free should not be expensive - its a matter checking labels, buying only flour which is g/f of which I don't use a lot of. Becoming creative & libraries have many books to get you started.

I grow some of my own vegg/herbs in pots on my decks & eat basically a plant based diet with very little meat. Chicken/fish & love my nuts.

Don't do dairy as lactose intolerant + creates phlegm. Hope some of this helps you to get back on track.

SlowDragon profile image
SlowDragonAdministrator

over 3000 posts that mention gluten on here

healthunlocked.com/search/p...

Many, many hundreds of members are on gluten free diets.

Janeylou69 profile image
Janeylou69 in reply toSlowDragon

Thankyou slow dragon ,I will look at all this .

LucyYoga profile image
LucyYoga

Hello- I wanted to reply to this as these are the exact same symptoms I had earlier in my thyroid journey in the lead up to being disgnosed with hashimotos- symptoms which I believe are commensurate with a ‘flare up’ in some people. I too struggled mainly with weight loss during my hashimotos journey. When I had the same symptoms you describe I stated working with a functional nutritional therapist, and once I’d addressed my gut health, nutritional deficiencies and food intolerances the symptoms you mentioned went away. I thought at the time I might have Crohns disease, ulcers and god knows what else but for me it turned out to be rectifiable by the measures I’ve stated above. I follow a strict diet but a year later my gut has been healed and my gut microbiome is much much healthier with a greater proliferation of beneficial bacteria vs. Unbeneficial bacteria.

It’s interesting re the weight- apart from the first couple of months starting thyroid replacement when I suddenly puffed up with water weight/ mucin, which then fell off after about a month, my experience has not been that I’ve put on weight. But as I said I follow a strict diet avoiding all personal food intolerances which I think definitely makes a difference with weight gain. I think I was undisgnosed for a long time as I was never overweight and GP’s and most people tend to assume if you are hypothyroid you are going to be obese.

Also the weight loss can be due to not absorbing nutrients and not digesting food properly. Again people often assume that it is because you are hyperthyroid when that is not necessarily the case.

Good luck and don’t panic!

Janeylou69 profile image
Janeylou69 in reply toLucyYoga

Thankyou I hope its not anything serious this has been going on for a couple of years and I'm hoping if it was cancer that my doctors would of found it by now ,that's what is really worrying me .

LucyYoga profile image
LucyYoga

Well I agree its wise to get it all checked out. All these symptoms lead us into such health fear. Take care and fingers crossed it is nothing serious

Janeylou69 profile image
Janeylou69 in reply toLucyYoga

Thankyou Lucyyoga, its been very depressing for me because this is what we have to think about every day ,fingers crossed that it's nothing serious .

LucyYoga profile image
LucyYoga

xx

Sleepman profile image
Sleepman

Re cost of gluten free.Like ratherbegardening said about avoiding gluten free products and changing diet.

For searching this forum - I do it from google not on forum search as I find not brilliant.

"Healthunlocked.com" with quotes gives only this forum.

Corn flour

I learned gf stuff has assorted in ingredients and best avoided.

With gluten, I get numbness in toes and pins and needles as well as gut issues. If gluten is a trigger it seems this is lifelong whereas dairy can be a year off and then you might be ok.

Good luck.

Capan24 profile image
Capan24

When you have hashimoto's, your body can attack other parts of your body. Many of us have other autoimmune diseases. I think you should have a colonoscopy. I was diagnosed by colonoscopy with microscopic lymphocytic colitis. I have malabsorption issues with this. I was tested for pancreatic elastase which was lower. That can mean that my pancreas is not producing enough enzymes to digest my food and lead to malabsorption. I also had a recent EGD which showed esophageal reflux. Now I'm dealing with having a little bit higher hemoglobin a1c which usually means you have problems with your blood sugar. I am not overweight and eat a very healthy diet. So yes Hashimoto's can wreak havoc on your body. Pay attention to your symptoms. Don't let anybody push you aside. I was starting to feel like maybe people would think I'm a hypochondriac. But I'm not. I know my body. And I know you know your body. I hope you get some answers soon.

Janeylou69 profile image
Janeylou69 in reply toCapan24

Yes I get exactly where your coming from ,it does feel like I've just been left to get on with it ,I do suffer a lot of burping as well but I've had that for years ,and all my blood tests are fine apart from iron deficiency and low vit d which I'm taking tablets for the gastroenterologist has said that colonscopy won't do me any good coz I had one not long ago so they want to do an ultrasound of my bowel which I'm waiting for and worrying a lot about it xx

Capan24 profile image
Capan24 in reply toJaneylou69

Good luck to you. I hope you get some answers.

Janeylou69 profile image
Janeylou69 in reply toCapan24

Thankyou xx

Capan24 profile image
Capan24 in reply toJaneylou69

I also just recently had a CT with contrast of the abdomen to specifically look at my pancreas which was normal. Everything was normal except I had a few gallstones without inflammation to my bladder. They don't seem to bother me. But it was a relief to know I didn't have any kind of tumor. My sister-in-law had symptoms but everybody ignored her. She wound up having a CT scan later and was diagnosed with advanced pancreatic cancer. That was part of the reason I pushed for the CT scan. Glad I did and it was a relief to know that there was nothing wrong.

Janeylou69 profile image
Janeylou69 in reply toCapan24

I'm so sorry about your sister in law ,how long did she have symptoms for ,I've had symptoms for quite a while x

Capan24 profile image
Capan24 in reply toJaneylou69

I think a couple years.

Batty1 profile image
Batty1

Have you been check for gallbladder problems or food sensitivities?

Janeylou69 profile image
Janeylou69 in reply toBatty1

I've got gall stones but they are only small and don't seem to be bothering me and they did gluten test which came back clear thanks .

Batty1 profile image
Batty1 in reply toJaneylou69

They might be small but that doesn’t mean they aren’t causing issues, just saying.

Janeylou69 profile image
Janeylou69 in reply toBatty1

Hi what sort of symptoms can gall stones cause xx

Batty1 profile image
Batty1 in reply toJaneylou69

According to my mother it causes pain.

Eddie83 profile image
Eddie83

Foods to which you are allergic can cause both hypothyroid (via Hashimoto's, usually) and bowel problems. (I am speaking from personal experience.) Strongly suggest you get tested for food intolerances, or if you cannot afford testing, try dropping each possibly offending food from your diet for at least several months to see how you feel. The leading problematic foods are gluten, dairy, soy (esp. GMO) in that order, but there are others.

Janeylou69 profile image
Janeylou69 in reply toEddie83

Yes it definately could be that ,thankyou ,it's worth trying this .

Eddie83 profile image
Eddie83 in reply toJaneylou69

BTW, are you actually on thyroid replacement yet? My experience was that hypothyroidism, all by itself, messes up digestion. Of course getting rid of Hashimoto's is also important, but that can't be done quickly.

Janeylou69 profile image
Janeylou69 in reply toEddie83

Hi eddie83 yes im on levothyroxine 100mg a day , my last tsh was 2.37 which was a while ago, I have a dull ache feeling in my abdomen, so not sure what it is plus all the other symptoms of complete exhaustion ,so tired, sleep doesn't even help ,I'm iron deficient and low vit d plus ,high blood pressure and slightly high cholesterol ,and also weight loss ,but the weight loss started back in 2018 way before I found out I was hypothyroid which started during my pregnancy in 2019 ,I can't get my head round it coz loads of people who are hypothyroid can't lose weight ,it's confusing to me thanks for your reply .

Eddie83 profile image
Eddie83 in reply toJaneylou69

"Functional" medicine docs like to see TSH in the 1-2 range. Have you considered/can you afford to add a small dose of T3 to your regimen? My thyroid support is levothyroxine=100mcg + liothyronine=7.5mcg. That holds me at TSH=0.6 which is still within the "normal" range.

Janeylou69 profile image
Janeylou69 in reply toEddie83

That's the thing my doctors won't even test anything else ,the labs only test tsh ,so if I want to get ft3 ft4 tested then I will have to do it privately ,which I'm not sure how much it is thanks for your reply xx

Eddie83 profile image
Eddie83 in reply toJaneylou69

The only other thing you could do, would be to skip the testing and try to find a source of liothyronine 5 mcg tablets. Docs who don't believe the "T3 is bad" partyline, would agree that taking 5-10 mcg of T3 daily isn't going to do any damage cuz that's roughly the amount a healthy thyroid makes. But T3 may not have a positive effect on you, you can't know unless you try it. Are you in the UK?

The other thing I wanted to mention is: if you do in fact have a food intolerance or some other toxic thing going that has messed up your gut, fixing that can take a long time. From the time in 2003 that I got my diagnosis of gluten intolerance, it took a good 9 years to get to a point where I felt mostly well. I had massive nutritional deficiencies because my intestinal villi were flattened, and it took that long to correct deficiencies, and for my gut to restore itself. I'm saying this to you because it's too easy to give up when you have an authoritarian doc who isn't state-of-the-art and won't cooperate with you. So somehow you have to continue to hang in there (I know, easier said than done).

Tillysnanna profile image
Tillysnanna

Hi, I have all the same symptoms so I really can identify. I had a colonsoscopy in 2017 and a biopsy and it was diagnosed as microscopic colitis. Might it be worth asking the questionof your medical professional ? The colitis episode was brought under control by steroids but still lasted for about 6 months. I understand this particular diagnosis is a little bit rare but it still might be worth asking if it might be a possibility. Good luck and very best wishes.

Janeylou69 profile image
Janeylou69 in reply toTillysnanna

Thankyou very much tillysnanna ,I've no clue ,I'm hoping I will get some answers because its quite depressing, I have 5 children at home and I'm too tired to do anything ,and I feel absolutely rubbish all the time .

SilverSavvy profile image
SilverSavvy

Fantastic advice from everyone on here as usual...but getting the bowel scan may allay your worries about cancer so definitely worth doing. Extra anxiety on top of thyroid issues won't help your digestion in any case. Peace of mind is priceless...

Janeylou69 profile image
Janeylou69 in reply toSilverSavvy

Thats exactly what I'm worried about ,I'm worried they are going to find something coz all.my symptoms have been going on for quite a while ,it's depressing x

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