Hi there. I’ve hashi and coeliac (on road to recovery I believe from recent biopsy). But have diarrhoea most mornings (I’m certain not from gluten) and last few weeks feel truly dreadful - constant nausea from waking til late afternoon, only relieved by eating. Sweet things particularly have an instant impact in terms of recovery. Docs have run loads of tests which all came back in “normal” range. Including tsh of 7 (no t3 or t4 tests). I didn’t think much of it as have generally been really lucky with thyroid and not paid much attention other than to take my thyroxine. But am now wondering if I should look at the thyroid for an answer. But are these symptoms weird for hypo? Docs are now running t4 and t3 as I requested but are adamant it can’t be thyroid causing this. Any thoughts? Thanks in advance am feeling rather desperate at start of long family camping hols
In addition and rather scarily Imodium has stopped controlling the diarrhoea (4 pills yesterday but bad from 5am this morning)
Also when nausea starts im really shaky until I can eat when it settles pretty quickly
Tillyxx, Nausea is very much connected to being hypothyroid. TSH at 7 is way, way too high, especially for someone on thyroid medication.
Diarrhoea tends to be more associated with being hyper, but could also be due to something you're ingesting too. I expect you've already analysed your diet for possible food causes, but have you considered it could be a reaction to something in a medication? It may even be the levothyroxine.
Have you recently had brand change if Levothyroxine?
TSH of 7 is ridiculously high. The aim of Levothyroxine is to take high enough dose to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range
When hypothyroid it's more normal to have constipation, but gut can be badly affected too
Are you loosing weight, gaining or staying level
Essential to test vitamin D, folate ferritin and B12. All can be low due to Hashimoto's and/or coeliac
Obviously being coeliac it's also likely vitamin levels can be badly affected. Magnesium levels can be low with gluten free diet
What supplements do you take?
Thanks so much both. I’m on 100mcg levo. No supplements. Doc said all vits iron etc good. Can’t remember results but do remember b12 330. Pharmacist recommended sucrose which has been a godsend today on move and camping. He also said thought I should ring 111 while away from home to try to find immodium alternative but I’m not holding out too much hope. Might have to cut hols short if this persists. Thanks again x
If you can get a copy of your vitamin results and share them with the site, that would be worth your while. Doctors have an obsession with "normal" ranges, but normal and optimal are not always the same, and low-normal results can also make you ill.
You definitely seem to need a dose increase IMO - can you get an appt with another GP in the practice?
Thanks cooper. I’m seeing same one this morn. I actually have a lot of time for her and my instinct is she will listen. I may be wrong but feel she’s the best place to start. Came home from camping trip - torrential rain helped 🙄
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ok how embarrassing the TSH was 0.7 not 7. Doh. She was completely fine about my querying it, and i was so flustered i forgot to ask for printout doh again. T4 is 17 and she's chasing them for the T3 results. But overall I guess tsp 0.7 and T4 17 sound ok ish do you think?
She's reassured me i can take a lot more immodium than I have been (in fact recommended I did to try to keep more in me to get more from my food before it hurtles through my body) and is referring for urgent gastro appt at hospital.
She's also given me amitriptyline for IBS (which I gather is also anti anxiety which practically may not be a bad thing) but am feeling a bit wary as never taken any anti anxiety/anti depression meds and not sure I want to start. Probably being over cautious...
Thanks for listening - the camping trip was a bit of a nightmare and I really need someone to listen
Not to worry about the TSH mistake It is possible the symptoms are cause by too much levo, but without FT4 and FT3 results it's difficut to say.
When I mentioned it could be a reaction to the levothyroxine, I meant to ask which brand you're taking. Some people have tummy issues with certain brands, so I would certainly want to rule that out before taking any other meds for the diarrhoea and nausea.
Hi red apple. Levo brand is teva. I’m thinking prob not as have had 3 good days on a stupidly restricted diet. Tho feel as tho my guts are planning trouble this eve (with no dietary change 🙄). Exhausting frankly 🙄. Thanks for replying.
Always get actual results and ranges on all vitamin and thyroid tests
Vitamins may be within range, but that's not necessarily optimal levels
Vitamin D around 100nmol,
Most of us need to supplement especially if gluten intolerant/coeliac (plus magnesium and vitamin K2 Mk7)
B12 and folate towards top of range
Supplementing a good quality daily vitamin B complex
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Hi Tillyxx, I had exactly the same symptoms as you describe when I when I was very unwell with adrenal fatigue. I would wake up, open my eyes and need to rush to the toilet. I then felt so nauseous I couldn’t do anything. My husband would get me a protein shake and I would sip it. Often taking me hours to finish it. Then I would start to improve. I eventually got adrenal stress index saliva test done which showed my cortisol output was all over the place and was indeed the cause of my problem. I got better with help buy eating a good source of protein eg. Boiled egg every 3-4 hours, taking nutritional support for my adrenals, getting better quality sleep and generally trying to look after myself mental by getting peace and meditation etc. It is a slow process but worked for me. Good luck
thanks for replying - sorry to hear you;ve had such a hard time. whatever is causing this I am aware I need to slow/calm myself down a bit (I'm definitely naturally hyper - not in a thyroid sense, just how I'm made I think). I can remember (long before the coeliac diagnosis) thinking how much better my guts were when I did yoga. Doc has checked cortisol and says it's fine but I do think I still need to remember to be a bit more omm for want of a better description. Glad it's improving for you x
I’m not questioning your results, but mine too came back normal from the dr. He did a 24hr collective cortisol which was within normal range. However when I did an Adrenal saliva stress index test which was collected over four different times of the day it showed significant highs and lows of cortisol , which accounted for my health issues. If my four samples of saliva had been added together ( the low readings and then the extremely high readings) it would have shown a normal result over 24hrs. So maybe your cortisol was tested in the correct manner and that’s great if it was. But it may be worth following up if it was collected in one batch.
So you’ve recently found out you are Coeliac and starting to go gluten free. Firstly I would join Coeliac UK as they are a fabulous resource. Has someone explained to you about being 100% gluten free for healing your gut and how to read labels? Hopefully you are getting a referral to a dietitian- meanwhile start with C UK.
Your body will be going a little crazy as it adjusts to being gluten free and keepin mind that depending on the level of gut damage it can take several months for healing to take place. And that is on 100% gluten free. In the first 6 months of me being diagnosed with CD my thyroid levels were all over the place and I was having them tested every 2 to 3 months. As my gut was healing I kept being over medicated and gradually was having to reduce the thyroxin dose. Basically I was able to utilise the thyroxin better.
As others have posted you need to see copies of your test results. The B12 sounds low to me and sometimes low B12 can give gut issues for some people. It’s highly likely that iron/ferritin are low in range and D3 too. I took supplements for all these in the first year of finding out about Coeliac - decent levels are needed for thyroid function and will help your gut heal too.
There maybe an issue with adrenals but personally I would focus on the Coeliac and thyroid levels initially and getting vitamins/minerals checked/improved.
I hope you feel better soon
Thanks for your reply. I realise my initial post wasn’t clear at all. I was diagnosed 2 years ago and am neurotically careful re gluten.
Since my last post I’ve reluctantly gone to a super careful whole foods only diet and also taken B12 and am feeling definitely better. Tho music festival for next 3 days will be a challenge 😱.
My GP is fairly certain thyroid ok but we are keeping an eye on it.
Thanks for your kind words - it was really quite scary a few weeks back
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It is possible the symptoms are cause by too much levo, but without FT4 and FT3 results it's difficut to say.
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