Hi ,I'm newly diagnosed hypothyroid, plus B12 , D3 and folic acid deficiency.My TSH initially was 5.9 and started on 50micrograms 9 weeks ago, plus Vit B12 shot and oral D3 and folate.
Had another blood test 2/52 ago TSH only . TSH reduced to 2.9 but still feeling awful. T4 not tested at any point.
Advice please on prescribing protocol
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
It can be a challenge to get FT4 tested on the NHS and almost impossible to get FT3 tested. This is why thousands of members in this group buy their own private tests to see whats really going on and if conversion to FT3 is adequate. Often it is the lab that veto's testing FT4 & FT3 not the GP.
See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
GPs can be very conservative about increasing Levo dose believing that too much can cause harm, so instead they don't give us enough.
NICE guidelines suggest a dose of 1.6 x weight in kilos = approximate final dose
This isn't a precise way at all of estimating final dose but is a useful guide.
Most people feel well when their TSH is at or just below 1. Sometimes asking for an increase as a trial goes down well and gets the dose increase. You may need to go back and ask different docotrs but do keep asking and don't give up.
Usually you take a certain dose of 6-8 weeks, retest then increase until your TSH is at or just below 1.
With so many deficiencies have you been tested for coeliac disease?
Obviously with the various deficiencies you have it will take a while to feel better and you will need to continue to supplement Vit D & folate once your prescription finishes.
With B12 injections its recommended to also take a good methyl B complex which will help keep all the B vitamins in balance. Suggest you do this after your folic acid prescription runs out.
B complex suggestions: Slightly cheaper options with inactive B6:
amazon.co.uk/Liposomal-Soft...
Contains B6 as P5P an active form:
bigvits.co.uk/thorne-resear...
healf.com/products/basic-b-...
Explanation about the different forms of B6:
helvella.blogspot.com/p/hel...
B complex comparison spreadsheet:
see/contact GP for next 25mcg dose increase in levothyroxine
How low were B12, folate and vitamin D
How much vitamin D are you currently taking
B12
Have you only had one B12 injection
Did GP test for Pernicious Anaemia before starting B12 injection(s)
presumably you are also prescribed Folic acid supplements from GP?
Vitamin D
NHS Guidelines on dose vitamin D required
panmerseyapc.nhs.uk/media/2...
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 autoimmune thyroid disease (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 when supplementing
Can test via NHS private testing service
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 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...
Recipe ideas
bbc.co.uk/food/articles/mag...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
Low B12 and folate
Are you vegetarian or vegan
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
NICE guidelines on B12 and testing
healthunlocked.com/redirect...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate daily B12 supplement (or B12 injections every 1-3 months)
After you finish folic acid prescribed by GP look at starting a daily separate vitamin B Complex
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 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 supplements
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus B complex popular option. 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...
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 can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 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...
helvella.blogspot.com/p/hel...
Post discussing starting B12 injections
Thyroid
What were results at diagnosis
Just testing TSH now is completely inadequate, but frequently all that GP will test
Hence thousands of U.K. patients test privately
Were thyroid antibodies tested at diagnosis?
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Has ferritin level been tested?
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
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)
Essential to retest vitamin D, folate, ferritin and B12 at least annually…..more frequently initially
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
Also VERY important to test TSH, Ft4 and Ft3 together
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
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG 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
What was your b12 level? A single shot is an unusual treatment. Generally b12 deficiency can either be controlled by diet - if is caused by diet, removing the absorption impediment- if it is caused by a drug for example or if it is some form of PA by shots for life and the starting point is shots every other day for at least two weeks and until no further improvement in symptoms. Thereafter shots at regular intervals such as monthly or weekly depending on the individual.
Many GPS in the UK are not particularly diligent in their treatment of b12 deficiency and many people self manage.
If there is no reason for deficiency, such as diet, then once tested and treated b12 retests are generally not a good idea as it could result in the medic declaring " your cured" and with holding treatment.
Best wishes
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