Hi, diagnosed with hypothyroidism several years ago and then coeliac disease during covid. Long story that I won’t bore you with but I’m eating gluten for 6 weeks at the moment prior to gastroscopy. Anyway, since starting gluten again I have been having constant numbness and tingling in toes (a bit like the feel of chillblains but it doesn’t go away). Rang BUPA GP today for advice, I have access via work and they have been invaluable at interpreting tests/results from my GP/NHS. They have advised it could possibly be peripheral neuropathy as quite common in people with hypothyroidism. To me, symptoms only started when I started eating gluten recently so I’m not so sure. I’m sure I saw a post on here recently about link between hypothyroidism and peripheral neuropathy but can’t seem to find it now. Does anyone know any more about this?
Peripheral Neuropathy: Hi, diagnosed with... - Thyroid UK
Peripheral Neuropathy
You haven't posted in a while and your last TSH was quite high.
Do you have a copy of your latest blood results? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
What supplements are you taking?
What are your latest blood results for ferritin, folate, B12 & D3?
I haven't heard of too much peripheral neuropathy associated with being hypo, more low B12.
Hi, thanks for your reply. I have access to blood results, last tests were Jan 2023. I’m due a review this month. Results were high considering I’m on treatment:
Serum free T4 level 16.9 pmol/L [10.0 - 20.0]
Serum TSH level 6.3 mu/L [0.2 - 6.0]; Above high reference limit
Thyroid function test Raised TSH suggests slightly inadequate replacement T4.
Levothyroxine was increased from 100mg to 125mg and I did feel the difference.
Other blood results have also been out of range but again think this is because I was more recently diagnosed with coeliac disease. Ongoing tests re this, and gastroscopy booked for end of this month.
Well by your January 2023 results you were pretty hypo and quite possibly even a 25mcg dose increase wouldn't have been enough to get your results to an optimal place to remove all of your symptoms.
That coupled with likely vitamin deficiencies resulting from being coeliac AND under replaced and I can't imagine you feel at all well.
Usually after a dose change either way you would expect to have another blood test 6-8 weeks following that to check your new levels. Are you saying they didn't do this after your January increase?
How are you doing your blood tests? We have a patient to patient protocol that gives you optimal conditions for the blood draw:
Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Which other blood results were out of range? If you have vitamin results then do post them here along with the reference range for each test.
We need OPTIMAL levels of vitamins for our thyroid hormone to work well.
because I was more recently diagnosed with coeliac disease. Ongoing tests re this, and gastroscopy booked for end of this month.
If you know you are coeliac why are you still eating gluten
Hi, thanks for info. Was diagnosed with hypothyroidism years ago after antibody tests, etc. Had them all, these results were just most recent.
I was diagnosed with coeliac disease during lockdown, at which point the second stage (the gastroscopy) was not being done routinely due to pressures on hospitals. GP diagnosed due to high antibodies, the autoimmune thyroid condition and a family history of both. I have been on a gluten free diet for a couple of years.
Latest other blood results;
Blood haematinic levels
Serum iron level 5 umol/L [5.0 - 33.0]
Serum transferrin level 2.82 g/L [2.15 - 3.8]
Serum TIBC 64 umol/L [36.0 - 77.0]
Saturation of iron binding capacity 8 % [15.0 - 50.0]; Below low reference limit
Serum vitamin B12 level 406 ng/L [180.0 - 910.0]
Serum folate level 4.69 ng/mL [> 5.4]; Below low reference limit
Serum ferritin level 6.9 ug/L [10.0 - 291.0]; Below low reference limit
Blood haematinic levels Iron studies are compatible with iron deficiency anemia. Borderline low folate. Probably dietary.
This is an improvement as results at time of diagnosis said ‘malnourished’.
As hospitals now returning to normal have been advised to have the gastroscopy but have to be eating gluten for 6 weeks prior. I’m about a month in, and the symptoms described in original post have started since then.
Was just wondering about the connection.
So what’s been prescribed for your anaemia
Iron and ferritin deficient
Folate deficient and B12 inadequate
No vitamin D test
Eating gluten when gluten intolerant or coeliac will affect absorption of levothyroxine and reduce vitamin levels
Peripheral neuropathy linked to low B vitamins
What vitamin supplements exactly are you taking
You should have been retested 8 weeks after increased to 125mcg daily
What are your most recent TSH, Ft4 and Ft3 results
Which brand of levothyroxine and how much are you taking
Hi
Levo brand is Teva
Also prescribed iron tablets (ferrous fumarate 210mg)
Aside from these I take over the counter multi vit and minerals
Will not be eating gluten ever again after 29th Jan when I have gastroscopy
Bloods due to be reviewed at GP on or around my birthday which is 27th but now I’m typing this I’m thinking this needs to be pushed back slightly as results will be elevated due to recent 6 weeks on gluten
GP protocol same as Jaydee1507 described above, first appointment of day and no levo for 24 hours beforehand.
Will have a read of thyroid UK re: links with peripheral neuropathy, didn’t know about link to low B vits… thank you, it was exactly this advice that I was looking for before going to GP with symptoms
Teva brand doesn’t suit many people
Have you tried other brands
If you need lactose free you could try Aristo also called Vencamil…..currently only available in 100mcg tablets
Multivitamins NEVER recommended on here
Most contain iodine not recommended on Levo, and especially with Hashimoto’s
Test vitamin D twice year when supplementing
Test folate, B12 and ferritin at least annually
How many iron tablets per day are you taking
Any iron supplements must be 4 hours minimum away from levothyroxine and 2 hours away from all other vitamin supplements or medications
What has GP prescribed for your folate deficiency
When were these vitamin results…..recent?
As you have Low B12 symptoms GP should test for Pernicious Anaemia BEFORE you start any replacement B vitamins
Test for PA is not accurate…..misses 50% of cases
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week or so later add a separate vitamin B Complex
Or …..if GP prescribed folic acid…..start this 5-7 days AFTER starting B12
Once you finish prescription Folic acid …..then start daily B complex instead going forward
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help maintain B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
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)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
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 folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500
Post discussing how biotin can affect test results
Test vitamin D via GP or via NHS postal kit now
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 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
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...
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...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
Will not be eating gluten ever again after 29th Jan when I have gastroscopy
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
you already know a strictly gluten free diet is essential for you …….but an endoscopy can be helpful…..especially further down the line if/when you need T3 prescribed
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Post discussing gluten
thyroid UK have a list of thyroid symptoms sorry I cannot pass the link on as I not sure how to do it, might be worth looking at. Hope you manage to find it. Found it on a link about 12 days ago. Mentions feet and legs. I think the link was posted by humanbean.
Bloods should be retested 6-8 weeks after changing from gluten free diet …..likely to cause poor absorption of levels
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Especially with coeliac or gluten intolerance
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
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)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
These are notes I’ve saved rather than personal experience or knowledge.
I’m afraid in copying and pasting I’ve lost the links
Peripheral Neuropathy
Burning feet is peripheral neuropathy…..very common with low B vitamins
neuropathy which can be caused by both a Thiamine (B1) and a B 12 deficiency.
This is my blog page about Burning Feet. You might find something helpful there.
helvella - Burning Feet
helvella.blogspot.com/p/hel...
You are likely to need to self supplement vitamin B complex daily…..
Test before starting any B vitamins
————-
In most searches the link between neuropathy and hypothyroidism is described as not well understood and mostly linked to carpal tunnel disease, but the following two links show high occurrence of the kind of neuropathy I have in the early stages of hypothyroidism. Diagnosed by nerve conductance studies.
ncbi.nlm.nih.gov/pmc/articl...
jnnp.bmj.com/content/68/6/750
—————
Burning pain in feet without redness can be a symptom of undermedication for hypothyroidism.
I have Hashimoto’s and peripheral noeuropathy. The latter began about 20 years ago, alongside other symptoms of being hypothyroid. Nerve conduction studies revealed confirmed neuropathy in feet, legs and, to a lesser degree, hands. Neurologist did not suggest link with hypothyroidism at the time, ( and I hadn’t thought to ask!) but endo has suggested a connection.
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