Could I have Coeliac disease alongside my under... - Thyroid UK

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Could I have Coeliac disease alongside my under active Thyroid ?

animalfanatic85 profile image
15 Replies

I got diagnosed in March with under active thyroid and have been experiencing a wide range of symptoms including rapidly cognitive decline. I posted on here not king about about my b12 being low and also Vit D .

B12- 264ng (211ng-911ng) ( SEP)

403ng (211-911ng) Dec.

serum vit D is 59nmol ( 50-250nmol) (Dec )

I have been taking b12 spray since September as Dr wouldn't out me on injections! Hence why it's gone up. My vit D is still low though.

I have been suffering excessive gas,bloating floaty stools and still suffering with bad constipation , for the past 6 or months! I have read up more about Thyroid issues and apparently you can have Coeliac disease too?

I have mentioned this to my Dr this morning because this is why my b12 maybe low as it causes the malabsorption of vitamins. I have also stressed to her that the 50mg I am on is not enough for my symptoms and according to my records on patient access my levels are creeping up. Here is a list

12 March - *Diagnosed* 6.20 (0 .30-5.00nmol)

23 June - 1.99 (0.30-5.00nmol)

16 Sept - 2.95( 0.30 5.00 nmol) *proper jumped up especially experiencing the cognitive impairment and decline!)

8 Dec - 2.50 (0.49-5.23 nmol)

Serum T4 14pmnol/L (11-22pmol/L)

Dr has agreed to up my dosage to 75mg taking the 25mg on alternative days. This is only because I got upset 😔. I will be taking the 25mg on alternative days! She kept saying my levels were normal but I said they have crept up! She agreed to up it!

She has also requested a coeliac test , I requested an antibodies test on Dec 8 but other Dr gave me a menopausal test?? That came back fine! I was annoyed at the other Dr for this as I did not request this! I asked the Dr today for an antibodies test and she told me they are no use oe something! So I have booked the private one for £26 on here this morning to get full Thyroid health including T3!

Since my diagnosis I haven't had my T4 done or my T3!

I am happy my dosage has been upped ! And bloods again in 6 weeks to check if it's ok to carry on.

Sorry for Long post . I have been going insane these past few months and I need answers!

Thank you ☺️

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15 Replies
Buddy195 profile image
Buddy195Administrator

Hi animalfanatic85,I would definitely take charge of your own testing. I feel empowered by doing this, as I can monitor my thyroid, antibodies and key vitamins. I don’t even bother asking for the medics advice/ suggestions on Medichecks, as I’ve had far better advice by posting my results on this forum.

Re coeliacs, I’ve never been tested for this, but feel so much better being gluten-free, as many symptoms I previously experienced have disappeared. Many of us with thyroid issues are gluten intolerant.

Localhero profile image
Localhero

As your rather useless GP won’t test your antibodies, we can’t say for sure you have an autoimmune form of hypothyroidism, but since the vast majority thyroid disease is autoimmune, there’s a high chance yours is. And it’s not at all uncommon for autoimmune disorders to occur together. Meaning you may well be coeliac.

In any case, many of the folks who get their thyroid symptoms in check end up avoiding gluten. I know you’re supposed to leave it in your diet if you’re going to be tested for it and hopefully someone else here can advise on that as I just decided myself to try going strictly gluten free, before waiting to be tested. I can personally vouch for the improvements that made to me. FWIW, I went dairy free at the same time.

In any case, digestive issues are symptomatic of hypothyroidism and indeed an indicator that you are still undermedicated. We’ve no idea what your T3 is doing. But your T4 is only a quarter of the way through range and you ideally need to get it into the upper third of the range to feel well.

Like Buddy195 said, I’d advocate for taking charge of your own blood tests, eg via Medichecks, and taking more advice from here when you get them on how to ask for what you need from your doctor.

It can feel pretty daunting, and it can take time, but you can feel a lot better!

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after EACH dose increase

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and INSIST on thyroid antibodies tested

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

SlowDragon profile image
SlowDragonAdministrator

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

healthcheckshop.co.uk/store...?

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...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

SlowDragon profile image
SlowDragonAdministrator

You also need folate and ferritin levels tested

Vitamin D is too low

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

animalfanatic85 profile image
animalfanatic85 in reply to SlowDragon

Thank you sooo much for this information! My Dr will hate me calling up again tomorrow pushing for more tests 😬. I do agree with the Vitamin D as it's only 59nmol! I will get the spray as I have the B12 one and it is working. I was vitamin D deficient back in 2018 after two weeks in Arizona!? Didn't get it! It was 47nmol back then and Dr put me on a very high dosage. And I stopped after taking them.Think looking back at my medical history on patient access app, I have been borderline under active for years!

Serum TSH levels over the years ...

15 Jul 09- 5.33 ( 0.20-6.00 Miu/L)

21 Jul 10 - 4.3 ( 0.20-6.00 Miu/L)

5 Jul 12 -. 3.4 ( 0.20-6.00 Miu/L)

14 May 14 - 3.23 (0.20-6.00 Miu/L)

1 Apr 16 -. 3.67 ( 0.30 -5.00 Miu/L)

14 Jun 19 -. 3.64. ( 0.30- 5.00 Miu/L)

And SEP 18 when vitamin D was diagnosed as low my thyroid was high

4.12 ( 0.30-5.00)

I think I may just pay the £79 for the test this once and then explain to my Dr and push for her to do it next time! As I can't afford this amount every 6-8 weeks 😔.

I have jotted down all this information!

I have also placed an order for the £26.10 test.

I will wait for my results for Coeliac and will start gluten free even if negative!

Looking at my above results do you think I may have had this for the last 10 years? I have been the drs for numerous things over the years including tiredness and bowl problems! Shocking looking at my own medical records and getting myself clued up now!

SlowDragon profile image
SlowDragonAdministrator in reply to animalfanatic85

You will see from this Median TSH graph that yes, your results suggest hypothyroid since 2009 ...or earlier

healthunlocked.com/thyroidu...

Low vitamin D is strongly linked to being hypothyroid, especially with autoimmune thyroid disease (hashimoto’s)

pubmed.ncbi.nlm.nih.gov/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

pubmed.ncbi.nlm.nih.gov/300...

The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.

TSH daily variation

healthunlocked.com/thyroidu...

Very important when you test TSH ....

researchgate.net/publicatio...

According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

Why it is important to test fasting

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

SlowDragon profile image
SlowDragonAdministrator

Are you saying dose only been increased to 75mcg on alternate days.....bloods should be retested 6-8 weeks later

likely to need to increase dose to 75mcg every day

Get weekly pill dispenser, makes it easier to manage and remember

Do you always get same brand of levothyroxine.....which brand?

animalfanatic85 profile image
animalfanatic85 in reply to SlowDragon

Thanks for the above information! This has definitely been a wake up call and realisation for me! Can't believe I have been going through some of these symptoms for years and drs never looked at my results! Shocking!

Yes she has gave me one box of 25mg of workhardt and my normal Levo 50mg I flick between two brands Teva and another brand in a brown and white box. (Don't know the name of them) . Depends on what pharmacy have in. Can that make a difference?

Yeah she did say she would test my bloods in 6 weeks time.

I am thinking the same! Since my levels have creeped up. What's the optimum level to feel better? Last level was 2.50 on 15th December.

Thank you for all this information!! I think I will also ask to be referred to an endocrinologist!!

Sent an enquiry to the spire in Manchester last too see how much it is privately.

SlowDragon profile image
SlowDragonAdministrator in reply to animalfanatic85

Typically costs £200-£250 for initial consultation....cheaper as follow up

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

(Office not open until after New Year)

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

No point seeing consultant until had next dose increase and got ALL FOUR vitamins OPTIMAL

Plus trialing strictly gluten free diet

First step is to get vitamin levels tested

Get FULL thyroid testing 6-8 weeks after dose increase

animalfanatic85 profile image
animalfanatic85 in reply to SlowDragon

Thank you! I will wait for their response. My T4 was 14 back in march. Think the range is (11-22). Not had it done since. ,😬.

I hope she does increase me again!

SlowDragon profile image
SlowDragonAdministrator in reply to animalfanatic85

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

SlowDragon profile image
SlowDragonAdministrator

Unless very petite you are likely to need further increase in levothyroxine in coming year

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

animalfanatic85 profile image
animalfanatic85 in reply to SlowDragon

I am currently my heaviest at 10st 10lbs my weight has pilled on over the years! I am around 5'7 in height too. Again I will take note and push my Drs!

Thank you sooo much! You've been a great help! I am so thankful I have found this forum/group!

SlowDragon profile image
SlowDragonAdministrator in reply to animalfanatic85

Helpful conversion chart

thecalculatorsite.com/conve...

10st 10lb = 68kilo

68 x 1.6 = 108.8mcg

108.8 x 7 days = 761mcg

So that suggests 100mcg x 5 days and 125mcg x 2 days a week

This is roughly the likely dose of levothyroxine per day you might need.

Some people need more, some people can’t tolerate full dose.

Dose is increased slowly upwards in 25mcg steps.

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