Still having issues with thyroid medication 😩

[birkie]

Hi everyone ❤️

I'm hoping someone can help me as I'm just about done with these thyroid meds,

Quick history, thyroidectomy in 2019 (graves thyrotoxicosis) (lactose intolerant and have colitis)

Put on T4 after thyroidectomy unfortunately it contained lactose and after gp told me to stick with them as side effects would lesson, my bloods were awful after 2 and a half months I then found out they contained lactose and got moved on to another T4 which were teva, these were worse but again gp told me to stick with them, again 3 month blood tests showed absorbtion problems.

OK I'm not going to go right through the medication history only to say I got put on T3 teva 😠 you can guess the out come of that, then put back on T4 then back on T3 (Roma) ... My surgery have been swapping my thyroid medication hoping to have a different out come in my symptoms, which are always stomach /bowle related, cramping, diarrhea bloating, inflammation, nauseated, sweating, really bad pain in bowles.

I recently had 2 camera procedures one showed a hiatus hernia and my colonosocopy showed nothing no cancer.

But still I'm having bad diarrhoea, cramping and bad inflammation in bowles with sickly feeling sweating I honestly look 7 months pregnant, I'm 61 with no womb so it's no that😄 I know it's the thyroid meds as I have done an experiment of coming off both T4 and T3 to see if the symptoms subside they always do, no diarrhoea, cramps or inflammation, sicky feeling, sweating and inflammation goes in that my stomach goes a bit flat I don't look pregnant.

I'm writing this as I've had another bad weekend of diarrhea, bowle inflammation, pain sicky feeling, and sitting on the toilet in pain and in this weather its hell on earth 😣 I'm sweating buckets, (Roma) i take 20mg at 8am 5mg at 6.30) I've tried several ways of taking these meds.. At bedtime, afternoon, trying to keep several hours between a meal but it's the same outcome as soon as I eat it comes right through me (I keep way more than the recommended hour after taking my meds before eating or drinking it's getting to the point of me not wanting to eat, either that or don't take the meds, which I know I can't do, but I'm very tempted just to get some relief, also I'm due for my blood test after trilating from 20mg to 25mg the more I up the meds the worse the bowles /stomach become.

I feel I just can't win, I'm stuck like this🤷‍♀️ gp will no doubt have my colonosocopy results as I had the procedure on June 2nd and because nothing was found I'm sure no further action will be implemented, I have around 7 photos of my bowle movements😩 add to that yesterday's which look like runny cow pats.

Is this my life now? Do I just have to suck this up? What the hell can I do next, I've tried just about every thyroid medication from tablet, capsules, liquid with the same results (also with the Roma which are capsules i take the powder out, I thought that might work as maby the capsules were the cause, but I'm still suffering 😣

[Regenallotment Ambassador]

hey Birkie, sounds like you are having a tough time. Sending you my best.

I haven’t been able to settle my tum either, doesn’t sound as bad as yours but solid movements are rare for me. I recently stopped taking zinc and that helped but then I set myself off again eating strawberries and home grown potatoes I think I have a histamine reaction to deal with now. I am going to try taking antihistamines for a few days and see if that helps. (And avoid high histamine foods)

Hope you find your answers 🌱

[greygoose]

Have you ever tried taking your hormone with food? I know that's not what is normally recommended, and you would probably need a couple of increases in dose to compensate for the lack of absorption, but it does work for some people. I would have thought it was worth a try, anyway.

[birkie in reply to greygoose]

Hi greygoose ❤️

Honestly I'd try anything at this point🤦‍♂️, I know my food triggers and don't ever eat them, but this is becoming embarrassing and painful, l'm worried because I'm off to Liverpool next week to see..... An endo who specialises in parathyroid problems (my pth, calcium have gone over active and 2 endocrinologist said I probably have primary hyperparathyroidism, parathyroid surgeon found a nodule on ultrasound scan, but I just wish I could also ask her about this thyroid medication crap🤦‍♂️ but I'm told you can only discuss the problem you are there for🤷‍♀️ shame really 🙄 the train journey is bothering me as when I need on... I really need on... I just won't eat.... 🤦‍♂️

[greygoose in reply to birkie]

I can imagine how you feel! I wouldn't fancy a long train journey even without those problems.

I think it is rediculous to say that you can only discuss one problem with a doctor, because often different problems are connected in certain ways. How can you build up the whole picture with just one piece of the puzzle?

Anyway, I wish you luck with that. Do let us know how you get on. x

[Imaaan]

Hi there,

Sorry to hear about your difficulties. Have you been tested for hplyori and sibo?

[birkie in reply to Imaaan]

Been tested for hplyori that was negative don't know what sibo is 🤷‍♀️.. But just has 2 camera procedures one found an hiatus hernia, the colonoscopy found nothing, just my colitis no cancer, I reckon the meds are irritating my colitis 🤷‍♀️

[Batty1]

Im also having your same problem pretty much out of the blue and no idea why this is happening to me …. I can’t tolerate heat and racing to bathroom almost 30 minutes after taking my thyroid meds ….. Do you think it could be something your eating causing this problem… I’m starting to suspect this could be my issue I think I developed a food intolerance issue that hit’s after I take my thyroid meds.

Sadly I haven’t lost any weight with this.

[birkie in reply to Batty1]

Hi batty1❤️Ho batty I've just come back from the toilet second time today 😣 bad cramps, pain runny stools, sweating like a pig.. 😢 OK before I had my thyroid removed i was always constipated, I got diagnosed with lactose intolerance and colitis in 2015 but still had constipation.

I did have runny stools and cramps if I'd eaten my trigger foods Dairy especially cheese, also bread it took around a year to find my triggers and I've stuck with never eating them, I have lactose free milk, no bread or dairy and from 2016 I'd cracked it no more pain no more runny stools, if I ventured of my diet I knew it.. 😣 I Went to a wedding in 2017 stupidly had some buffet one of the sandwiches contained cheese 😣 boy did I suffer💩 but I vowed I'd never eat at a buffet again, never have.

It all started up again in 2019 when I was put on T4 that's when the bowles went nuts, found out my first lot of meds contained lactose, got off them put on teva which contained mannitol same effects, it's been this way since being on any thyroid medication and I've tried the lot except NDT🤷‍♀️.

I did 2 experiments where I took myself off the thyroid medication to see if the effects would go... They did.. But I know I can't stay off thyroid medication so went back on all effects came back.. So through sheer desperation I did it again with the same results.. All stomach /bowle symptoms went everything was calm no pain no runny stools, I could eat normal without the run to the loo👍 but again I had to go bk on them😣 I want to do the same experiment again but I'm due to have bloods done in 2 weeks so cant😢 I've taken loads of photos of what I'm passing just taken 2 today 😣 I don't think I can cope much longer😢 and the most depressing thing is... Like yourself I'm not loosing any weight eventho all the food I eat goes right through me🤷‍♀️🤷‍♀️