Prescription or try gluten free ?: Hello, I had a... - Thyroid UK

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Prescription or try gluten free ?

mountainice profile image
20 Replies

Hello, I had a follow-up with the geriatrician I saw last in January. At least he listened and I felt like I was talking to a person, but he did say he wasn't going to address thyroid any more and would leave it to the endocrinologist. He told me my head scan and heart tests were normal. Asking how I was I said not so good, feel queasy. Had a really bad day on Tuesday, felt queasy and then suddenly feel terrible as if something is washing through my body and I have to sit down. My head goes swimmy and eyes don't seem to be in line with my head when I turn it. When I get a day like this I have to sit most of the day till bedtime. I have had them before many times. He diagnosed vertigo and gave me a prescription for Stemetil - Prochlorperazine is a prescription drug classified as an anti-nausea and anti-vomiting medication, as well as an antipsychotic agent and it carries a black box warning. He only gave me two weeks worth as he said it sometimes works for nausea and sometimes doesn't. I am not sure I will take it as it looks horrendous. He did focus on the sickness but I said that the diarrhoea that has been accompanying the nauseous feeling has so far stopped from end of July, and that I have been self-injecting B12 since April and I am wondering if this has had a good effect. Of course, I might have more than one thing overlapping here, that is always the difficulty. What I forgot to say was I can still have the nausea (like today) without feeling dizzy or needing to sit down. I call those days when I sit all day my 'collapsing days', but I think he confused my terminology as he said people can have an impending sense of doom when they feel like they want to collapse. I call them collapsing days because I just can't do anything at all and sit watching tv till bedtime. Hubby cooks dinner.

I still think I need treating for being hypo but no-one wants to know. I have another gp appointment Monday. I am now wondering if I should try going gluten-free to see if that will improve T4 to T3 conversion - think I have got that right. The last endo said try gluten-free but he didn't say what improvements I might see. Do people go gluten-free as well as being treated for hypothyroidism? Thank you for any input once again.

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mountainice
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greygoose profile image
greygoose

Gluten-free is usually or people with Hashi's, because they're often gluten intolerant. It sometimes helps them feel better, sometimes doesn't, but I don't think it has anything to do with conversion. Do you have Hashi's?

Having optimal nutrients - vit D, vit B12, folate, ferritin - and taking selenium and zinc can help with conversion. But, there are so many reasons why people don't convert well that it's a bit hit and miss. But, in any case, you do need optimal nutrients for general good health. You also need to consume enough calorie for good conversion.

Do you take a B complex with your B12 shots?

mountainice profile image
mountainice in reply to greygoose

I don't know if I have Hashi's as I can't get diagnosed. It was the last private consultant who suggested trying gluten-free - the one who wouldn't treat my 5.4 TSH which were Medichecks results. I am going to the gp Monday to see if she will do more tests that the consultant wanted as I didn't want to pay another £260 for blood tests as I had had the same ones with Medichecks, but he didn't want to take notice of them and said it was only just out of range.

My D has dropped over the past two years. I had got it to about 228 nmol/L in 2016 and now it has dropped to 114. I have been supplementing with 10,000 iu all that time (consultant said most people only take 1,000), plus K2 and magnesium but have had some days when I don't take it and when on holiday don't always take it, but I was surprised at the drop. I self-inject B12 about every 10 to 12 days plus gp jab. I take folate most days, usually leave a gap here or there. I take zinc a couple of times a week as I was zinc deficient and I take iron. I also take B complex too.

Maybe not much point in going gluten-free then. I am supposed to do it for 12 weeks and then go back to the consultant.

greygoose profile image
greygoose in reply to mountainice

Very strange thing for the consultant to suggest. I wonder what he thinks it's going to do for you.

mountainice profile image
mountainice in reply to greygoose

He didn't say, but I am sure I read somewhere it helps the conversion of T4 to T3.

greygoose profile image
greygoose in reply to mountainice

I've never heard that.

mountainice profile image
mountainice in reply to greygoose

I've just thought of something today, why is the endo saying try gluten-free if he doesn't believe I am hypothyroid?

greygoose profile image
greygoose in reply to mountainice

lol That's a very good question. But, I'm afraid you'll have to ask him, because I have no idea! The ways of endos are weird and wonderous!

mountainice profile image
mountainice in reply to greygoose

Tell me about it. I’ve got a 24 hour urine test next.

greygoose profile image
greygoose in reply to mountainice

And what's that supposed to prove?

SlowDragon profile image
SlowDragonAdministrator in reply to mountainice

Sometimes you get immediate noticeable improvements, but can take longer than 12 weeks to see improvement going GFree

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts.....can see your antibodies appear to be within range

But 20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

I would suggest it's always worth trying strictly gluten free diet if Hashimoto's is suspected

Poor gut function 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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

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...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Your TSH slightly high and FT4 and FT3 on low side

Couldn't see any test results for ferritin, vitamin D or folate

I can see you are self injecting B12

Suggest you get Medichecks thyroid plus ultra vitamin (£99 often on offer at £79) retest including vitamins 2-3 months after trying strictly gluten free diet

mountainice profile image
mountainice in reply to SlowDragon

Thanks. I had a coeliac test quite a while back - negative. At the moment the queasiness has been lasting without a break since Tuesday, I seem to get it in bouts. Also, when I press my stomach just above my belly button, it is tender. I have told all this probably 2 years ago to the doctor. They press the stomach but that is all and no more said. Could you explain please why if the test is negative I could then go on strictly gluten free ? I will look at your links but got visitors here for the weekend so it will have to wait till Tuesday.

SlowDragon profile image
SlowDragonAdministrator in reply to mountainice

Vast majority of patients are gluten intolerant not coeliac

Coeliac is just one specific form of gluten intolerance

Gluten contains a specific protein that opens up gaps between cells in stomach lining causing leaky gut.

You don't have to have Hashimoto's to benefit from gluten free diet. Many non Hashimoto's patients say it helps too

Sounds like you might have low stomach acid and/or GERD - both very common when hypothyroid

Again gluten free may help improve this

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

scdlifestyle.com/2012/03/3-...

naturalendocrinesolutions.c...

GERD

thyroidpharmacist.com/artic...

holtorfmed.com/gerd-and-thy...

healthline.com/health/gerd/...

mountainice profile image
mountainice in reply to SlowDragon

Hi, I was particularly interested in this link:

scdlifestyle.com/2014/08/th...

as within that there was a link to click on 'Specific GI Issues' and this is a bit more of my puzzle - the queasiness and diarrhoea for 14 years and my slow bowel. It mentions hiatal hernia under Hypothyroidism, Esophagus and stomach - I have an epigastric hernia so I don't know if that could be related. This article is 2009 so I don't know if there is a more up-to-date one.

This one to do with eyes:

touchophthalmology.com/medi...

I have Fuchs Endothelial Dystrophy which the endo said he had never heard of! Within that video the doctor says that in the past 10-15 years receptors for thyroid hormone have been identified in the cornea. It is an interesting video.

mountainice profile image
mountainice in reply to SlowDragon

I don't have GERD symptoms. Prob low stomach acid as I have Pernicious Anaemia.

SlowDragon profile image
SlowDragonAdministrator in reply to mountainice

Suggest you try strictly gluten free diet for 3-6 months

Getting FULL Thyroid and vitamin testing testing again after 2-3 months on gluten free diet

Make sure to get blood test early morning before eating or drinking anything other than water

Come back with new post once you get results

Remember to stop taking any supplements with biotin in a week before any blood tests as biotin can falsely affect test results

mountainice profile image
mountainice in reply to SlowDragon

I've got a TFT test tomorrow and only left off b complex since Tuesday. I've been reading and from what I've seen 50 mcg won't make a lot of difference, hope so anyway.

SlowDragon profile image
SlowDragonAdministrator in reply to mountainice

Probably long enough

Lalatoot profile image
Lalatoot

I don't have Hashis but I much prefer being gluten free. Don't know if it helps with conversion but it has stopped bloating and much improved gut function. You won't know till you try.

mountainice profile image
mountainice

I am just dreading trying it as when I looked at lists of foods it is in everything, including things like tomato sauce, mayonnaise and salad cream which we eat quite a lot of. I thought it would just be cutting out things like bread, cakes and crackers, but seems harder than that. I don't really get bloating only very occasionally, once in a blue moon, mostly is the nausea in stomach and in mouth (if you have that sensation of when you want to be sick, you get a funny feeling in the mouth - my husband says he doesn't know what I mean), plus the tenderness above belly button.

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