I was diagnosed with hypothyroidism approx 2 years ago. In the last 6 months my tounge has become very sore at the tip. It feels like I have scolded it. My dentist said he thinks I'm lacking in vitamins.
I have started taking B complex. My GP states my B12 is ok. I am prescribed ferrous fumerate 305mg x 2.
Is there anything else I can take to help heal it?
please add most recent thyroid and vitamin results and ranges
How much levothyroxine are you taking
Do you always get same brand levothyroxine at each prescription
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
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
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/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
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
Other options
healthunlocked.com/thyroidu....
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
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
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
My latest results where I was given figures was in 18th Feb 23. After I asked about b12 they did another test but I wasn't given a figure, the results just read normal. In Feb 23 my serum ferritin was 21ug/L
Serum vitamin B12 was 325ng/L
Serum folate >23.5.
It then reads acceptable for this patient.
There are no other figures for my thyroid?
Feb 23
ferritin was 21ug/L
Serum vitamin B12 was 325ng/L
Serum folate >23.5.
It then reads acceptable for this patient.
Ouch - very poor vitamin levels
Suggests you are likely on inadequate dose levothyroxine
Ferritin extremely deficient
So how long have you been on iron supplements
GP should retest after 3-4 months
B12 too low as below 500. But GP won’t treat as within range
No range on folate
No vitamin D result
How much levothyroxine are you currently taking
When were thyroid levels last tested
I take 50mg levothyroxine. I take it at 6am approx 2hrs begore food or drink. I'm going to book another blood test.
50mcg levothyroxine is only the standard STARTER dose levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
Typically dose is increased up in 25mcg steps……over 6-12 months until on full replacement dose
unless extremely petite replacement dose is likely to be on at least 100mcg per day
guidelines on dose levothyroxine by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually 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...
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.
I had an appointment with endocrinologist in July. I have just contacted the secretary to find out the latest results of them. She said he only tested TSH and it was normal. Not tested for T3,T4, iron, b12 or zinc . Is it possible for bloods to say normal TSH but still have these side affects? Also I had my levothyroxine at 6am on the day of appointment which was 2pm. I have never been been advised to have bloods before taking the levothyroxine before you told me. Could this alter my TSH results.
I have been low in iron for years. My body just doesn't seem to store it naturally. At first it was believed to be through heavy periods. But it's defo not that anymore. However if I stop taking ferrus fumerate my iron levels drop.
Vast majority of endocrinologists are diabetes specialists and useless for thyroid
Just testing TSH is completely inadequate
TSH has significant diurnal variation. TSH is Highest early morning and lowest after lunch
Low ferritin will lower TSH significantly
Next step
Get FULL thyroid and vitamin testing done via Medichecks - currently 20% off
medichecks.com/products/adv...
Test early morning between 8-9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
take levothyroxine AFTER test
Come back with new post once you get results
She said he only tested TSH and it was normal.
Contact her again and get actual result
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population not on replacement thyroid hormone is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Hi SlowDragonI requested another blood test with gp and my results came back today
B12 - 375ng/L
Serum ferritin 117 ug/L (I'm still taking 305mg x2 ferrus fumerate daily)
TSH - 2.39mU/L
(Not tested T4 or T3)
Full bloods all seem good.
Do you think I need to request an extra 25mg levothyroxine. I'm currently on 50mg.
And is B12 in supplement form worth buying if docs won't give B12 from them?
Dentist still believes my sore mouth and tounge is due a vitamin shortage. Which I think is one of the reasons I'm still lethargic.
Thank you
Request 25mcg dose increase in levothyroxine
Retest in another 6-8 weeks
which brand levothyroxine are you currently taking
Ideally don’t change brand as you increase
Meanwhile working on improving low vitamin levels
Have you had folate and vitamin D levels tested
Yes B12 is definitely too low
Low B12 symptoms
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 as well as a separate vitamin B Complex
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
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 improve 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
Other options
healthunlocked.com/thyroidu....
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
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
Post discussing how biotin can affect test results
Definitely politely and firmly request 25mcg dose increase in levothyroxine
Likely to need further increase in few months time
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thanks so much. I'll call next week to ask for my dosage to be increased and I'll get some B12 🤞🏼
Welcome to the forum
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Have you had thyroid antibodies tested?
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
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)
I get reddish tongue which gets very dry at night. My vitamin B12 levels are good, including an 'active B12' result. I find taking B12 supplements helps. I suspect there is some sort of unknown impairment to B12. The bottom line is try high dose B12 for a month or so to see if it helps.
I would suggest trying out vitamin B12 like your other replies have said.
The best kind of B12 is methylcobalamin and you can buy some supplements which also contain adenosylcobalamin. Both these types of B12 are the active version.
Some people have done well with this product :
cytoplan.co.uk/vitamin-b12-...
For more info on types and levels of B12 :
perniciousanemia.org/b12/fo...
perniciousanemia.org/b12/le...
Please note that for the body to make use of the vitamin B12 you have you need adequate levels of folate. The best supplement for folate is NOT folic acid it is methylfolate :
b12deficiency.info/folate-b...
healthunlocked.com/thyroidu...
takecareof.com/articles/ben...
chriskresser.com/folate-vs-...
mthfr.net/methylfolate-side...
If you decide you need folate please start B12 first then start the folate a week or two later.
...
Also, low iron can make the tongue sore as well. I'm assuming that you have low iron since you have been prescribed ferrous fumarate at a high dose.
A lot of people struggle with tolerating iron, and if this applies to you be aware that there are a lot of different kinds of iron supplements available, so if one doesn't suit then you can easily try another one, and you don't need a prescription (even for the one you have been prescribed). You can buy some kinds of iron supplement from pharmacies in the UK or online. Before spending money please ask for suggestions, because some iron supplements are rarely successful in raising people's iron or ferritin levels, so it is best to go by suggestions from the forum.
There may be some more relevant suggestions on this link :
Do you know what your B12 test result was? I'm betting the GP saying it was OK is not worth much. This is very much a deficiency of B12 symptom for a lot of people.
Ferritin
Any obvious reason for anaemia
Heavy periods or vegan or vegetarian?
Hypothyroidism often results in anaemia
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Posts discussing Three Arrows as very effective supplement
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Iron patches
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Excellent article on iron and thyroid
cambridge.org/core/journals...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Ferritin range on Medichecks
healthunlocked.com/thyroidu...
Inflammation affecting ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Hi Slowdragon.
Following on from my low vitamin levels and sore tongue, I have my latest results from 14th Dec 23.
I listed them and Greygoose replied stating my t4 and t3 looked odd as my t3 is a higher % ??
My tounge has still not improved, but my other vitamin levels are looking better I think.
Do you think they are odd too?
Also, can an increase in levothyroxine affect hrt? Since I increased levo I have started having flushes and night sweats again which was previously under control.
My levothyroxine has been increased from 50 to 75.
I take my 75 levothyroxine 6.30am. )50 is Accord, 25 is workhart).
1 x ferrus fumerate, Vitamin D-2000iu, Vitamin B12-1000ug, Super B-Complex, which contain folic acid., Fish oil-1000mg. Ferrus fumerate 305mg (prescribed by GP as my levels drop when I stop taking it. I take these at 2pm.
Progesterone and 1 x ferrus fumerate at 10pm.
I stopped my b12 and b complex 9 days before my blood test. The test was taken at 7.30am before my levothyroxine and on an empty stomach.
TSH 0.63 mU/L range 0.35 to 5.50
Free T3 5.69 pmol/L 3.5 to 6.5
Free T4 15.6 pmol/L 10 to 20
Vit D 72.2 nmol/L a above 50
Serum vit B12 532 ng/L 150 to 620
Serum folate 20.4 ug/L 3.1 to 19.9
Serum ferritin 122 ug/L 20 to 300
Do I need to stop B12 and just continue B Complex?
I'm very confused and appreciate any advice.
are you saying you take ALL the vitamins apart from iron at 2pm
Ideally take B vitamins in morning, at least 2 hours after Levo
Vitamin D mouth spray can be any time
Vitamin D tablets with food, ideally a high fat meal to improve absorption
Iron at least 4 hours from levothyroxine and at least 2 hours away from all other vitamins apart from vitamin C
Do I need to stop B12 and just continue B Complex
Yes you can reduce…..probably stop separate B12 now
Hi. I have been taking 1 x ferrus fumerate with all my vitamins at 2pm and the other at 10pm with progesterone. My B12 and iron has increased. I will separate the ferrus from the other vitamins. My vitamin D is a supplement, but I will try the spray next time.
When I posted my latest results, I believed my TSH, T3 and T4 were all good. However I was told my figures didn't see right as the t3 was higher than the t4. Would this suggest I need more levo? 🤔
Low zinc causes burning tongue too
I have this burning tongue and have been diagnosed with low zinc levels. Zinc uptake can be blocked by iron and also by eating wholegrains at the same time as taking a supplement. If zinc is down then, often, copper is up so if you can get a blood test for zinc then get one for copper too.
Hi I am also under active thyroid and been suffering with a sore tongue. My GP said I was slightly taking too much levothyroxine (75mcg) and reduced it to 50 and go back and get a blood test in 12weeks. While on 50mcg I felt tired and was falling asleep early in the evening with cold hands and feet. I went back for blood test and was told I was now not on enough levothyroxine so put me back to 75mcg. The following couple of months I felt really rubbish, down in the dumps and quite tearful and one evening could not stop crying. My husband asked me what was the matter but I couldn't tell him as I didn't know myself. I did mention to the nurse my falling asleep and cold hands and feet and she said it sounds like I could be deficient in B12 and I should start taking it which I have been doing. I am also going through the menopause so not sure whether my symptoms are du e to this or my thyroid or both. My tongue over the last couple of months has been sore around the edges and tip and sometimes feels too big for my mouth. I wish I could take it out and hang it out on the wash line as feels uncomfortable and I am drinking a lot o f water. Is having a sore tongue a symptom of under active thyroid. Any advice would be appreciated thanks.
Hi, i was on Carbimazole for 4 months and my tongue became sore on both sides, irritating gums ect ect within the first week. Endo knew, carried on. Was taken off it 2 weeks ago as went over medicated. I'm so relieved to be pain free at the moment.
Hi obviously must be due to our condition then or the medication we are taking. Glad you are feeling better
I know people have said it's due to thyroid, but i don't think so. I was diagnosed last xmas with Hyperthyroidism, had 3 stone weight loss. It was at least 2 years till i was diagnosed and didn't suffer with any mouth issues. Bang, 1 week on the Carbimazole and mouth seriously sore for everyday of the 4 months taking it. If my mouth was still sore i would agree it's the thyroid but, cross fingers, I'm pain free. I hope you get some relief soon, it effects every aspect of eating, talking and gets you right down x
Thank you x
Your description of wanting to hang out your tongue is so incredibly evocative.
If you have a detailed need for help, please post your question and most recent results (see comments above) in a separate post.
That’s what I have always been told to do here as it gives people more chance to see the title of your post. And in turn, you get more responses.
Hi I know I should get my results from my GP and add them as I don't have a clue what they mean and many people on here seem to know what is good and not so good. Thanks for your reply
I wonder why the nurse didn’t suggest you have a test for B12 deficiency before you started taking it. Without that test, you don’t know what to rule out first / replace to what level.
Hi that is what I thought but she couldn't be bothered I suppose. I feel like we are not important enough and just have to get on with it. My condition has never been explained to me - I don't know if it is hashimotos or not but getting an appointment with the GP is so difficult.
Suggest you ask for the GP email address. Receptionists often act like a military defence but emails can sometimes result in reaching a person with medical nous more directly. Good luck.
Ok I will try this and thank you for your reply x
You have had extremely poor care having been left far too long on too low a dose levothyroxine and low vitamin levels as direct result
Please consider signing this petition for much needed funding for helping to get better testing, treatment and understanding of thyroid disease
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Hi slow Dragon I have signed the petition - let's hope it gets us some improvement on these issues
Only 6200 signatures to go!!!
Petition signed. Hopefully our symptoms will be taken seriously
Hypothyroidism and Statins
Hypothyroidism and dementia.
hypothyroidism and weight gain 
hypothyroidism and cholesterol 
