Gastroperesis a new symptom I've acquired.

[BlueKeith]

For a month now I've been struggling with excruciating bowel pain in a morning and food not digesting on a night. Doctor said my ibs was back as I've suffered with it for decades until diagnosed with hypothyroidism and given levothyroxine then it all seemed to stop. Last year I had same issue and had worst constipation I've ever had. I asked doctor if it could be thyroid related and she said gastroperis can occur with thyroid disease.Was wondering if any of you guys have had a similar problem and any recommended treatment.

[RedApple Administrator]

Have you researched this? If not, there's quite a good article here about it gutscharity.org.uk/advice-a...

I didn't notice mention of hypothyroidism as a cause, but we have had members here that have been diagnosed with it.

Have you been prescribed anything to help? Typically, domperidone (motilium) can be prescribed for intermittent use.

[BlueKeith in reply to RedApple]

No not been prescribed anything but been told to not eat after tea and eat small meals then see how it goes. Thanks redapple will see how it goes then ask doctor for motillum .

[SlowDragon Administrator]

2 months ago you were very hypo with TSH of 6

healthunlocked.com/thyroidu...

Presumably you have had 25mcg dose increase since then

Bloods need retesting 6-8 weeks after each dose change or brand change in levothyroxine

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

What vitamin supplements are you taking

important to test vitamin levels at least annually

[BlueKeith in reply to SlowDragon]

Yes ive had a 25mcg increase to 125mcg levo. I take a multivitamin in afternoon and magnesium on a night. Quite a few improvements since the increase but slow digestion.

[SlowDragon Administrator in reply to BlueKeith]

Multivitamins NEVER recommended on here

Multivitamins don’t contain high enough levels to correct inadequate levels

Most also contain iodine not recommended for anyone on levothyroxine

Levo contains all the iodine you need

Suggest you stop multivitamins and test vitamin D, folate, B12 and ferritin at next test

And always stop any supplements that contain biotin week before retest as biotin can falsely affect test results

Which brand is 100mcg tablet

Which brand is 25mcg

[TiggerMe]

I get something similar if I trigger a histamine release or just overdo it, have you worked out if you have trigger foods, food diary helps..

Do you take anything to aid digestion like cider apple vinegar, betaine hci and pepsins... for the last 4 months I've been taking TUDCA which helps to stimulate bile production, something we are often low in.... I've only had one mild attack of the excruciatingly intense colon cramp since taking it... I do still eat carefully though to avoid triggers

I've never taken any treatment for it as I'd just rather avoid aggravating it 🤷‍♀️

[BlueKeith in reply to TiggerMe]

I will try the apple cider vinegar thanks

[BlueKeith in reply to TiggerMe]

Where do you get your tudca. That's a new one for me . Never heard of it but would like to give it a go

[TiggerMe in reply to BlueKeith]

I'd not heard of it before...

Here's a bit about it... drberg.com/blog/the-benefit...

I buy it from Amazon

(On the Bristol Stool Chart I'm bang in the middle these days😁)

[BlueKeith in reply to TiggerMe]

Thanks eeyore

[RedApple Administrator in reply to TiggerMe]

Eeyore100 'TUDCA which helps to stimulate bile production, something we are often low in'

I doubt Tudca will help if BlueKeith does have gastroparesis, because this is about the smooth muscle of the colon not working properly, not a deficiency of bile acid.

[TiggerMe in reply to RedApple]

You are probably right I've not looked up gastroparesis, are we not thinking the issue is low T4 hence low motility?...The suggestion was based rather more on the inability to digest food which I assumed was also part of the issue so improving this might also help the passage?

[RedApple Administrator in reply to TiggerMe]

Certainly worth trying 😊

[humanbean]

Are you able to defecate at all? (You don't need to answer!) If not then you need urgent investigation to see if you have a large polyp or tumour blocking you up.

I had a large polyp once and constipation became a serious problem. In order to relieve the pain I took OTC laxatives. Once the polyp had been removed my constipation became less of an issue.

I could give you ideas of over-the-counter laxatives you could try if you were interested.

[BlueKeith in reply to humanbean]

Yes I am still going a bit but last year had same symptoms and then everything stopped and couldn't go at all. Had to use miralax mini enema for a week.

[humanbean in reply to BlueKeith]

I found when I have problems that I need to use mini enemas to unblock the "end of the road" and I also use laxatives and hope that they work soon after I've used the mini enema, otherwise I might have to use a second, or a third. It's all about the timing.

I also got into the habit of using higher doses of laxatives than were mentioned on the packaging. Things improved (and I could start taking normal doses) when I started treating my problem before it had got to the desperate stage. I couldn't stand the pain any more if I left it late.

[BlueKeith]

No. NHS won't test. It's bad enough getting them to up my levothyroxine

[arTistapple]

Amazing this has not attracted more attention from your GP. Another blind spot to catalogue, not in their favour. It used to be called obstipation but I have not heard the term for a long time. The NHS used to send out nurses to manually remove it - probably not favoured by either partner, then or now! Like humanbean says about polyps etc. It should be investigated.

[humanbean in reply to arTistapple]

Eww! Ouch!

[helvella Administrator Thyroid UK]

Gastroparesis can reduce effective absorption of levothyroxine from tablets - or require a significant dose increase. Looks like there could be a nasty cycle - something goes slightly wrong which reduces levothyroxine absorption. That then affects motility hence reduces absorption further.

I did a search which found one paper I was looking for - that is claimed to be the first to associate gastroparesis with poorer absorption of levothyroxine:

Gastroparesis - a novel cause of persistent thyroid stimulating hormone elevation in hypothyroidism.

europepmc.org/article/MED/2...

And this one which points at the use of a gel cap (Tirosint) for levothyroxine rather than tablets. Though getting Tirosint in the UK is very hard:

Levothyroxine Tablet Malabsorption Associated with Gastroparesis Corrected with Gelatin Capsule Formulation.

europepmc.org/article/MED/2...

As I read through some results, I realised quite a number of papers mention misdiagnosis of gastroparesis, or other issues alongside. And, particularly as you mentioned IBS, it left me realising I couldn't decide which were relevant to you. Hence, I am just posting the search I ran - and leaving you to read through and pick up anything relevant:

europepmc.org/search?query=...

[BlueKeith]

Thanks hellvella. I've had digestive problems for 3 decades . Always said IBS . It is nowhere near as bad now I'm taking levothyroxine but still suffer this time of year. Thanks for the links very interesting.

[helvella Administrator Thyroid UK in reply to BlueKeith]

It might very well fall into what is classed as IBS. But IBS doesn't explain why - at all.

Being this time of year does rather suggest the possibility that you need slightly more in the winter months. That used to be a regular topic here but is less often discussed. Typically adding something like 25 micrograms a day in winter.

If you are on a barely adequate dose, then needing more in the winter seems to me to be more likely!

[TiggerMe in reply to helvella]

I've found this to be the case, I take 5mcg more T3 as the days shorten... particularly aware of levels when we get a cold snap like we have just had as that seems to take twice the energy when out and about.... I was tempted to add another small increase... perhaps next time the temperature drops...

[BlueKeith in reply to TiggerMe]

I've mentioned to my doctor about taking T3. To cut a long story short she basically said NHS doesn't give out t3 apart from exceptional circumstances but didn't explain what them circumstances were but my journey was only in early stages and would look at it at a later date.

[TiggerMe in reply to BlueKeith]

Have you ever had a full thyroid blood test to see how well you convert to fT3?

I get my T3 from the NHS... it was a battle but with all the knowledge here behind me it was achievable... which part of the country are you?

[BlueKeith]

I'm on 125mcg . I've got quite a few boxes of spares so may try a 25mcg increase. My theory is Iack of sunshine . 20 years ago it was January I was the poorliest I've ever been and we had a holiday booked to Tenerife. I was contemplating not going but went. By end of week I was cured . Temporarily of course but have booked every year in January or February since. Every time I feel miles better . Vitamin d tablets don't have same effect but I take them still. I will mention to my doctor about poor absorption of levothyroxine with gastroperis. Could be onto something. Thanks again

[TiggerMe in reply to BlueKeith]

Before I was diagnosed/ treated I would rarely 💩 more than once every 4 days!

[TiggerMe in reply to TiggerMe]

Have you tried the sublingual liquid Vit D, I find it works better avoiding the gut

[BlueKeith in reply to TiggerMe]

No but wil try it. I'm not 100% it is gastroperesis. Every morning though the pain in left side is agonising and sweat pours out of me with every bowel motion.

[TiggerMe in reply to BlueKeith]

When was the last time you had a colonoscopy? Worth getting them to take a look

[BlueKeith in reply to TiggerMe]

Never. Had it for that long I've never thought it was over serious. Could be time to do though

[TiggerMe in reply to BlueKeith]

Definitely 🤗

[Blissful]

You could try making a castor oil pack (random link)

yahoo.com/lifestyle/researc...

and/or take about a couple of teaspoons of organic olive oil - (it doesn't have to be virgin or extra virgin). Of course it may not help you but you'll have a lovely shiny coat

[BlueKeith in reply to Blissful]

Ha ha. Thanks for the tip