hello all. All apologies of this has been asked before but I’m new to this forum. I’ve recently been diagnosed with hypothyroidism and my follow up blood test showed that my TSH was now normal range and my vitamin D was still low. Including high cholesterol levels After waiting 5 weeks!! For a telephone appointment to discuss my results I expressed my distress with the fact I still feel unwell and after a brief period where I started to feel better I was now feeling very unwell again and waiting 5 weeks was not appropriate. I also asked why only my TSH was tested which she replied that the labs take it upon themselves to not test T4 if the TSH was in range, anyway we done a full discussion around my HRT, cholesterol and my weight which I cannot get on top of so referrals have been made and she stated she was going to request a further full blood works and will now include testing for celiac. I have had to avoid gluten for so long due to the effect it has on me but now have to eat bread etc daily to check my antibodies correctly. I read that celiac is very common with hypothyroidism as it is an autoimmune disease and wonder if anyone else has the same issue. It may sound odd but I hope I am celiac as it will answer so many questions for me but It’s such a minefield trying to get my head around everything. The menopause and hypo is bad enough with the brain fog I’m driving myself crazy
celiac and hypothyroidism : hello all. All... - Thyroid UK
celiac and hypothyroidism
Welcome to the forum
How much levothyroxine are you currently taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
What were thyroid levels BEFORE starting on levothyroxine
And what were thyroid levels at this recent test?
How low was vitamin D and how much vitamin D are you currently taking
Important to also test folate, ferritin and B12 levels
I’m currently on 50 and strange you should mention the change in brand as the pack before my current one was a different brand. My results are
Page 2
Low Vitamin D extremely common with hypothyroidism
What did GP prescribe
GP should have prescribed 1600iu everyday for 6 months
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG 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, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/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 NHS private testing service when supplementing
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.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
Another member recommended this one recently
Vitamin D with k2
amazon.co.uk/Strength-Subli...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
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...
Hi. Thank you that’s really informative. I was told not to do vitamin D supplements yet but gp told me yesterday to start to take the supplements
Which brand of levothyroxine did you start on
Which brand of levothyroxine are you currently taking
50mcg levothyroxine is only the standard starter dose
With TSH over 2 you need 25mcg dose increase in levothyroxine and bloods retested again in 6-8 weeks
The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until TSH is around 1
Most important results are ALWAYS Ft3, followed by Ft4
Request 25mcg dose increase in levothyroxine from GP
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
But for some people (usually if lactose intolerant, Teva is by far the best option)
Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
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.
New guidelines for GP if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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
I’ll be honest I don’t know the brand I started on and now back on as I’m at work at the moment and I have no idea what brand the one in between was. I’ll definitely take note of the supplements needed as well
Teva upsets many people
Photo of box
B12 and folate are too low…but not low enough for GP to prescribe
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) can be helpful
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
Low B12 symptoms
b12deficiency.info/signs-an...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Only add one supplement at a time
Waiting 2 weeks to assess any changes before adding another
Presumably GP has already tested thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
If you have been gluten free a long time there’s little point doing gluten challenge
Only 5% of autoimmune thyroid patients are coeliac, but approx further 80% find gluten free diet helps or is essential
Eating gluten for 6 weeks likely to make you very unwell
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/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
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.
Hi and Welcome !
Were you diagnosed with Hashimotos when diagnosed Hypo ?
Many Hashi's people are gluten sensitive. If returning to gluten causes problems I would assume you are gluten sensitive and take action. Gluten testing not always accurate. This is just my opinion !
If cutting out gluten is not helpful then you may need to consider dairy being a problem.
How are your levels of B12 - Folate - Ferritin - VitD ?
Raised cholesterol linked to being Hypo ....
What dose of Levo are you on ? Do you have any test results to share ?
I have Hashi's and was gluten free for 6 years.
How are you treating the Low VitD ?
Approx how much do you weigh in kilo
pathlabs.rlbuht.nhs.uk/tft_...Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
You also need ferritin level tested
Request GP test iron and ferritin levels for anaemia
Cœliac Disease is very common with Autoimmune Thyroiditis (Hashi's), not hypothyroidism for other reasons - and there are many. But, if you already know that you need to cut out gluten, I really cannot see the point of starting eating again just to test for Coeliac. As Marz says, the testing is not reliable, you get a lot of false negatives. And, even if you get a postive result, I don't see how that benefits you in any way. You're just going to spend six miserable weeks trying to prove something you already know: i.e. gluten doesn't agree with you.
So, what was your TSH result in this latest test? Your doctor will be happy if it's anywhere within the range, but the range is so wide, that being in-range isn't always good. If it's much above 1 then you're not going to feel well. And, high cholesterol is probably indicating that your FT3 is low, and that's what causes symptoms like the inability to lose weight. I would have thought the priority should be to get FT3 tested, rather than testing for Coeliac. Although I know you're unlikely to get that tested on the NHS! It is possible to do private tests, independant of the NHS.
I still feel unwell and after a brief period where I started to feel better I was now feeling very unwell again
This is the usual pattern, that's how it 'works'. It means that you need an increase in dose. Did your doctor give you an increase? If not, she knows very little about thyroid, I'm afraid.
Hello Bubby71. Gluten is an interesting topic where hypothyroidism is concerned. I have been diagnosed as having Gluten Ataxia as result of gluten intolerance by the NHS. You can be tested for gluten intolerance but not by your GP who can only test for Celiacs. To be tested for Gluten Intolerance you have to be assessed at one of the two centres in the UK specialising in Gluten Ataxia, one is in London and one in Sheffield.
It is true that to be tested for Celiacs or Gluten Intolerance you do have to have gluten in your diet for at least six weeks so the markers will show up when tested. Celiacs UK on the website show much you have to eat per day.
Because my gluten intolerance was not picked up early I have developed gluten ataxia. This is when the motor cortex of the brain becomes damaged by the immune response to gluten. Once it happens it cant be cured but by following a strict gluten free diet the progression of damage can be haltered and in some cases improve following a strict gluten free diet. I am lucky my tremors have not gone but have improved significantly since following a strict gluten free diet. Doctors and friens have noticed a big inprovement. My digestive problems have completely resolved. I am 20months into following a strict gluten free diet. I am due to see the specialist again this month. who is a world leading expert. I wish this had been picked up years ago when I first suffered tremors but unfortunately it has only been recognised in recent years.
With gluten ataxia you often develop the digestive problems later on, experiencing motor/neurological problems first so commonly missed by doctors.
Interestingly since going gluten free and having b12 jabs I have been able to lower my dose of NDT. I assume this is is because as my digestive system has healed my uptake has improved and obvoiously the b12 jabs will have helped uptake too. This explains why for many years I needed a higher dose of ndt than is in the normal range required.
If you have problems/symptoms as a result of eating gluten please dont delay getting proper testing to check for these two conditions. Your GP may well know a bit about Celiacs but may not be aware of gluten intolerance.
Hi Bubby71,
I am Hypo (Hashi's dx 2007) & Coeliac dx Nov 2020. The benefits of getting a coeliac dx, aside from just wanting to know (which I completely understand) are that there are recommendations for annual NHS blood tests
full blood count,
ferritin,
serum folate,
vitamin B12,
calcium,
alkaline phosphatase
associated autoimmune conditions (thyroid-stimulating hormone and thyroid hormone(s),
and serum glucose
liver disease (aspartate aminotransferase/alanine aminotransferase) and
dietary adherence (anti-TG2 or EMA/DGP)
Plus bone density scan/s (DEXA) because coeliacs are more at risk of osteoporosis.
If you have been 100% gluten free, but want to test then you should re-introduce very slowly for the 1st few days/week. You should also be aware that if you get an indeterminate result ( ie substantially over range, but less than X10 the upper limit) then they should refer you for biopsy.........so more weeks of eating gluten to get an answer.
Marz is right that the blood test is not always accurate, and that seems to be the case for all autoimmune issues. Apparently the 'Gold Standard' biopsies are not always accurate either......call me cynical, but this bit of info has been highlighted by Coeliac UK since Covid and back-logs.
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