Fluctuating digestive sypmtoms : Hi everyone, I... - Thyroid UK

Thyroid UK

122,452 members142,986 posts

Fluctuating digestive sypmtoms

owl87 profile image

Hi everyone,

I wanted to ask about digestive symptoms and hypothyroidism. They are one of the two biggest remaning symptoms for me even as my levels have imprpoved. I have recently been improving my thyroid levels hugely - my last ft4 level was 17 (10-20) and my last ft3 level was 5.4 (3.5-6.5) a couple of months ago. I have in this time experienced a noticeable improvement in many symptoms like my energy and being able to walk around for the first time in ages but I am still experiencing bad digestive symptoms and whats confusing me is they are worse now than they were a few montha go when my thyroid levels were lower and I was taking high dose iron every other day - I now take a smaller amount every 3 day.

Im suffering with constipation, burping lots including mid meal, a sensation of rising from my stomach up to my throat usually follwoed by gurgles and sometimes rising up acid which is giving me uncomfortable throat symptoms. I've had huge problems with acid reflux since about 6 months before diagnosis (2 years ago) - I had gastroparesis when diagnosed - and have had to eat a limited diet with no acidic stuff and liquidy foods still to this day due to my throat problems caused by the reflux. I'm gluten free, don't eat dairy and am drinking plenty. I assume I still need more thyroid medication as my symptoms aren't fully resolved and I am upping it bit by bit but I can't understand why my diegstive symptoms fluctuate so much and how they can still be so bad while other symptoms improve. It does also seem somewhat related to my menstrual cyle as I seem to have big issues with menstural hormones. Can anyone offer any insight or tips on how I can help this? Thank you!

46 Replies
SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine (and T3?) are you currently taking

What vitamin supplements are you currently taking

When were thyroid and vitamin levels last tested

Do you have Hashimoto’s?

Are you on absolutely strictly gluten free diet or dairy free diet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Low vitamin levels common as we get older too

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

On day before blood test, split T3 into 3 smaller doses, at roughly equal 8 hour intervals, taking last 1/3rd of daily dose approx 8-12 hours before test

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

owl87 profile image
owl87 in reply to SlowDragon

Hi SlowDragon, I currently take 87.5mcg levo and 7.5mcg t3. I take vit d, b12, iron, b vits and zinc. My last vitamin levels were all optimal a couple of months ago with the exception of ferritin which was 34 (10-150). I am strictly gluten and dairy free and we aren't sure if I have hashis - family history of thyroid disease but I had normal tsh and no antibodies at diagnosis with under ange ft3 and ft4.

SlowDragon profile image
SlowDragonAdministrator in reply to owl87

Obviously ferritin is still extremely poor

Are you working on improving

Are you currently taking T3 as 3 x 2.5mcg or single dose?

Have you tried increasing T3?

How much do you weigh in kilo?

Were you on higher dose levothyroxine before adding T3

How much do you weigh in kilo.?

owl87 profile image
owl87 in reply to SlowDragon

I still take ferrous fumurate but my ferritin levels don't seem to repsond to it nor to iron rich foods like liver - they only increased from 17 to 34 after my ft3 rose as it was previously 4.9. I take my t3 as 2 doses 8.5 hours apart and I weigh 64kg (I am 5ft 10).

I was on lesss levo before t3 was added as I was very underweight due to the gastroparesis, so I've had levo upped since I gained my weight back. I am trying to increase my t3 but my body is currently incredibly sensitive to it so I can only increase by small amounts at a time.

SlowDragon profile image
SlowDragonAdministrator in reply to owl87

Being under medicated for thyroid and low iron/ferritin likely linked

Suggest you try increasing T3 or levothyroxine (not both)

Retest in 6-8 weeks

owl87 profile image
owl87 in reply to SlowDragon

How much do you think I should try as an increase? My levels are currently 5.4/5.5 which is about 66% through range and I seem to do well with a FT3 about 5.7 or 75% through the range so not a huge amount to go?

SlowDragon profile image
SlowDragonAdministrator in reply to owl87

I would either try

3 doses T3 spread through day …..roughly 8 hours apart

Or

Try increasing levothyroxine, but perhaps split levothyroxine dose as 2 smaller doses waking and bedtime

owl87 profile image
owl87 in reply to SlowDragon

Thank you I think I’ll give the 2.5mcg t3 increase a go!

Hi there,

Hypothyroidism slows down the digestive system as well as gastroparesis and I'm wondering have you been tested for hplyori or sibo? A slower transit time can alter the microbiome and create dysbiosis which could lead to a host of symptoms.

owl87 profile image
owl87 in reply to Imaaan

I have been tested for sibo back when I had really poor digestion but it was negative. I've never been tested for hyplori though so could be an option!

I have lots of symptoms when I’m hypo, but one of the most distressing is heartburn - it has been so bad when I was grossly under-medicated that I had to sit up in bed, I couldn’t lie down! As my levels improved and I worked out what caused big problems for me with regards to the foods I was eating things improved dramatically. Many of us suffer from low stomach acid which is difficult to diagnose.

I as routinely prescribed omeprazole which did not work and actually started to make things worse. Needless to say I dumped the omeprazole.My route back to having virtually no heartburn ever is the following:

1 Get Meds at the right level for you

2 vitamins mid to high in range.

3 strictly gluten-free trail dairy-free

4***This may be peculiar to me because, other people haven’t mentioned it, but I find if I eat carbs, fat and sugar in large quantities together it is the perfect storm for heartburn.

Even a gluten-free apple crumble will do it for me and I will be uncomfortable for the night. It really isn’t worth it - I’ve put it on my can’t be bothered with it anymore list! LOL!

So I thought I’d test my theory to the limit the other night and I ate a chicken Jalfrezi with vegetable pilau rice, but there was no sugar! My eyes watered my mouth burned pleasure/pain, but I had no heartburn.

I keep meticulous records of how I feel what I’ve eaten and how it’s affected me and this helps you learn what works and doesn’t work for your body.

Imaaan’s point about gut flora is good too. We are only just starting to realise the influence gut flora has on health.

Gophe profile image
Gophe in reply to Charlie-Farley

I've been sleeping with elevated upper body for several years now due to reflux. I've tried pretty much everything to try to stop it but nothing has worked. I'm on a gluten free, sugar free diet. I was also dairy free for a long time but that didn't stop the reflux. I cut out all kinds of things that are supposed to cause reflux, and that didn't stop it. I tried drinking apple cider vinegar (a few folks in this group had told me the reflux could be due to not having enough stomach acid), but that made it worse not better.

But your note is the first I've heard that carbs + fat could be a cause (my favorite snacks are oat cakes, crackers and avocado). I'll try reducing that combo for a few days and see if it helps at all.

(Sugar can't be the cause, though. I haven't had sugar in many years; gives me a headache and swollen throat.)

Charlie-Farley profile image
Charlie-Farley in reply to Gophe

Hi Gophe

I tried apple cider vinegar and hoped but alas no - no good for me either. Yes just started to notice a pattern of when heartburn was hitting me. Keeping a note if what and when helped me identify the culprits 😂

I am wary that although I’ve got complete control of what I eat at home eating out can expose you to those foods which you avoid routinely.

I had my first meal with friends the other day they cooked for us it was a lovely evening, but followed by three days of scorching heartburn. I should’ve realised that my friend was not that clued up with food when she thought me going gluten-free meant I couldn’t eat rice! So she put flour in the dish (wheat flour) and she popped oat-based crackers (I should have read the labels but it seems mistrustful- though would have been justified). I had told her I couldn’t eat oats too and missed porridge just a few days earlier. I don’t think she had made the connection - only the porridge bit had stuck! I am now very very wary about eating at any friends houses. I feel slightly more confident about some restaurants but definitely not all.

One of the worst things about acid reflux disease is its anti social nature.

Yes to protect yourself you have to to be guarded. It’s put me off going to friends for food. I’m probably safer going out to one of the more clued up restaurants than eating at friend’s houses. 😕

Gophe profile image
Gophe in reply to Charlie-Farley

I hear you!! I only eat out about 2 or 3 times a year -- it's too complicated! The worst is all the questions from the person you're eating with about why you can't eat this or that. My diet is so restricted and, frankly, I can't remember why I can't eat half the stuff anymore, and my explanations for the other half probably sound dodgy to the average person. The Q&A takes all the fun out of the meal and leaves me feeling crappy.

On keeping a diary of what I eat: I did that for several months when I first started with the acid reflux, but I couldn't see any patterns at all (or at least not ones that resulted in really low reflux), so I gave up after a while. I did go low-fat for a while during that period, but I never went low-carb -- I just took out rice for a few weeks, then put rice back in and took out oats, etc.

Charlie-Farley profile image
Charlie-Farley in reply to Gophe

Yea oats have alway made me bung (sorry to much info). But the gluten-free thing was a complete surprise. Had no idea the benefits would be so profound! I have laid off the dairy but occasionally indulge- I find as long as I’m not hammering dairy day after day I’m ok. 😊

owl87 profile image
owl87 in reply to Charlie-Farley

Thank you I think your list is pretty applicable to me! I had a period in 2020 when my vits and mins and thyroid levels were all optimal and my digestive symptoms all but disapeared so I think being on too low a dose is causing issues here but I also agree that my gut flora is probably not the best after all this!

Charlie-Farley profile image
Charlie-Farley in reply to owl87

It’s ongoing isn’t it……. Tweaking to tread water in a calm happy place. Well after today’s discussions I’m off to get some sauerkraut 😂👍. Everyday I learn a bit more.

Low stomach acid is common in hypo patients, and IMHO easily tested for using the burp test. On rising, dissolve 0.5 tsp bicarb into 0.5 pint water and drink the lot. You should burp within two minutes. If you don't, you have low stomach acid and should have 2 tbsps Applce Cider Vinegar dissolved i water before every meal.

My wife and I also have raw unpasteurised sauerkraut with breakfast every day. It's a natural probiotic which colonises the gut with benevolent bacteria.

Gut health is seriously important and my opinion is that the medical profession is strongly biassed towards pharmaceutical therapies when low cost, low tech remedies can be more effective.

Gophe profile image
Gophe in reply to Jonathan1956

FYI, this didn't work for me. That burp test indicated I had low stomach acid, but adding the apple cider vinegar was awful -- felt like a hole burning in my chest.

dunestar profile image
dunestar in reply to Gophe

Even thinking about apple cider vinegar makes me feel poorly. Basically if you are hypo and have acid reflux then you are stuck between a very sharp rock and a very hard place.

Gophe profile image
Gophe in reply to dunestar

I was just reading yesterday about a connection between esopheagal reflux and insulin resistance. Since I have polycystic ovarian syndrome and the majority of women with PCOS are also insulin resistant, perhaps that's the connection I should be looking into...

Absolutely! Pharma companies drive NICE policy which then trickles down to NHS guidelines then to local surgeries who refuse to consider anything other than pills as far as my experience goes.

Natural remedies cannot be patented……

The less I see doctors in my local surgery the better I fair. Lately all they have done is make things worse when I’ve taken their advice. I had to basically take total control, analyse my own results, tell them what was needed - use the guidelines (when appropriate) and get on with it. Doing ok now!

But I’m interested- do you make your own sauerkraut (recipe) or do you have a brand you could recommend? 😊👍

Loving Foods Sauerkraut is unpasteurised and I get it from Amazon, 2 jars at a time, about £16.

Oooo thank you 😊👍

owl87 profile image
owl87 in reply to Jonathan1956

Thank you for the saurekraut advice! I did the baking soda test a while ago and never burped at all and I'm pretty sure I have low stomach acid badly with my hypothyroidism as experience has showed me. Now as I get better I think sorting my gut flora is a main focus!

Apple cider vinager was terrible for mi stomach. Please take care with this vinegar. I don,t recommend it .

I wouldn't take it neat - you need to dilute it quite well - say start with one tbsp in a glass of water - and also advisable to drink through straw or you will rot the enamel on your teeth

Yes, I diluted it and only one tbsp . I used only for a week and then began the terrible stomach pain because it is very acid. Please take care.

Ah, shame - maybe it isn't for you. I take it every morning mixed in a glass with half water and a small amt of apple juice and wouldn't be without it.

lifehack.org/488783/why-cab...

Raw cabbage has helped my symptoms. I understand it's a real medical thing in Japan. I know how it sounds....

Sounds eminently sensible to work on gut health 😊👍

owl87 profile image
owl87 in reply to Cornwaller

that sounds interesting but I'll give anything a go 😆

Cornwaller profile image
Cornwaller in reply to owl87

Good luck. It's one component which along with others over a period of time may help.

Redlester profile image
Redlester in reply to owl87

have you tried supplementing with betaine Hcl at the start of a meal? It supplements your stomach acid if it is low and helps with digestion

yes> You have got to learn about the gut microbiome and improve your gut bacteria. This is much more complicated than just eatinga yoghurt> I actually took a MOOC (modular online course on it at wageningen university via EDx> I am not sure why but I think thyroid disease has some sort of link to poor gut microbiome.

everyone is different, I know, but I take 175 levo daily and suffer from acid reflux. Since taking two omeprazole before I go to bed and a supermarket antacid tablet during the day, if needed, the reflux symptoms have become manageable and the discomfort has eased. It was always overnight when it was worst. I used to take one omeprazole in the morning and one at night. Much better, though not cured, since two at night. Just a thought.

I have had lots of problems with Hashimotos and inflammation. I’m reading Dr Isabella Wenz book about the root cause, I found her work through this site. She’s a pharmacist in America who had put her Hashimotos into remission. Her book ‘root cause’ is very informative. She took Betane with pepsin to help her acid reflux and cut out pineapple, dairy, gluten and soy with an addition of digestive enzymes plus a whole host of other things, I think purity of any vitamins is also important. Have you been tested for SIBO? Also get your protein absorption checked. Hope this is a small help snd good luck on your journey to wellness. This site is so helpful. 🌈

Apart from confirming you’re on the ideal thyroid medication dose and optimising nutrient levels, other things that could be involved are;

SIBO and/or SIFO

H pylori

food intolerances

The fact that you are burping a lot during a meal may indicate not enough stomach acid…or that microbes in your upper part of your gut are digesting/fermenting the foods and causing the burping.

Have you tried eating protein only in a meal (no carbs, condiments) such as plain chicken? If you find you can tolerate protein without carbs, this might indicate SIBO.

owl87 profile image
owl87 in reply to limonene7

Thank you I do think its a mix of low acid and not optimal gut flora - I've noticed the more watery (say a liquidy soup) and voluminous a meal the more burping and 'rising' after I get but I also burp randomly in the hours after a meal. I did have a sibo test done when I had very poor digestion at diagnosis and it was negative but I haven't tried the protein only meal so I might have to try that!

limonene7 profile image
limonene7 in reply to owl87

It's worth a try, I think. I have the same problem with burping after meals and for a couple of hours after. I have found that this only happens with carbs. I can eat protein and this doesn't happen. I also can't tolerate grains, if I eat bread, even gluten free stuff or things like oat biscuits, that will really set off severe acid reflux and heartburn which takes a few days to settle back down even after I stop eating it.

If protein only doesn't help, my next thought would be very low stomach acid or h.pylori. Although I'm not sure of the reliability of SIBO tests, especially as there can be methane dominant types which won't show up on a regular breath test. Regarding helping my own gut, I have found experimentation has been the best thing to help me work out what I can and can't tolerate food wise. Good luck x

I agree with the comments about investigations for SIBO, which is overgrowth of bacteria in the small intestine. I have hypothyroidism, and have had severe food intolerances, even though on a gluten and lactose free diet (which did help a lot). I found the low food map diet helped too, which I was prescribed by NHS, but I found it impossible to re-introduce the higher fodmap foods once I’d taken them out, so ended up with an even more restricted diet. Very difficult physically, mentally and socially. Everyone thinks you’re mad, and you begin to wonder yourself, as the reactions you get from doctors makes you think you’re the only one going through this. I had a course of caprylic acid which a holistic doctor prescribed as he thought I had an overgrowth of candida in the gut. That helped a bit, so he may have been right. I got my GP to refer me to a London hospital for hydrogen breath testing at a specialist NHS allergy clinic. They tested for lactose, glucose and fructose over 3 separate weeks, measuring breath and level of gases following taking a drink with each sugar in. My readings were very high, and the gastroenterologist prescribed a course of antibiotics, which helped immensely, and reduced my indigestion symptoms. If you haven’t been tested for SIBO, I would say it would be good to get assessed, to rule it out. I also have subsequently found out that I was being prescribed too low a dose of Levothyroxine for years, so am only now able to introduce more foods as my dose is corrected and my vitamins and minerals are optimised. It seems to be a long journey back to some health and functional digestion, sleep, energy, and an operational brain, but at least with this forum you know that actually you’re not the only one going through this.

owl87 profile image
owl87 in reply to bluejourney

Thank you I am sorry you've been through the same! We seem similar - at diagnosis I had gastroparesis and as my dose has increased my digestive symptoms have got so much better and I find the higher my dose the more normal foods I can eat - interstingly at diagnosis I couldn't tolerate dairy at all but when I had optimal levels in 2020 I was absoloutely fine with it though I don't eat it now. I did have a sibo test but that was 2 years ago now when my digestion was utterly awful and it was negative so maybe I should look into it again!

I’m glad to hear you’ve been able to introduce more foods. It helps a lot socially, and if you want to travel anywhere. Airports are the worst - full of pies, sausage rolls, cakes ….. a veritable gluten fest! I find I can eat dairy now if I buy lactose free products, and take a lactase tablet at the same time. Unfortunately fermented products, even though they’re meant to be good for your microbiome, make me worse. The stomach and gut are certainly very complicated, and hormones seem to have a huge effect on them.

I have had really similar symptoms to you but I am hyperthyroid(graves). I figured changing my diet would work and getting my levels balanced would help. I changed to no gluten, no dairy, no soy. What really helped with the acid at night was a pillow wedge and melatonin. I had a bad reaction to Lansoprazole so knew I had to find an alternative. Melatonin worked and there have been various studies on its ability to suppress acid. I also started wondering if this could also be gastritis so started doing a diet that involved low acid foods. Was extremely skeptical but it helped immensely, its called The Gastritis Healing Book: A Comprehensive Guide to Heal Gastritis and Restore Your Stomach Health. Have to say it turned things around, it talks about supplements that can help, eg DGL, slippery elm , zinc carnosine and also provides recipes. Then someone else mentioned on here about zinc carnosine and I so I bought Doctor's Best, PepZin GI, Zinc-L-Carnosine Complex (again lots of studies done in Japan about its healing abilities). I believe melatonin, the book and Zinc L carnosine have 90% sorted the issue for me. So basically give your stomach a rest and keep away from acidic(vinegars, lemons) and hard to digest things like lentils etc. Be careful if you decide to buy melatonin and have anything like autoimmune arthritis because apparently it can make it worse. Hope you feel better soon.

You may also like...