I posted last week that my TSH level was 4.8 yet T3 and T4 levels were in so called normal range. I am waiting my GP to call me back as she has emailed an Endocrinologist Consultant. I have had a few episodes in the last several months where my body temperature has dropped to 34.5 I feel sweaty and dizzy and feel like I'm going to vomit. After about an hour my temperature goes back to normal. This happened again yesterday and I felt very poorly. I mentioned this to my doctor last week and said this has been happening she didn't seem to be concerned. I read online that low temperature can be dangerous. On one occasion I almost passed out. Is this related to elevated TSH or something else.
Low temperature : I posted last week that my TSH... - Thyroid UK
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SlowDragonAdministrator
If TSH is over 2 you need dose increase in levothyroxine
On levothyroxine dose should be increased slowly upwards in 25mcg steps until TSH is always under 2
Request 25mcg dose increase in levothyroxine
Which brand of levothyroxine are you currently taking
Do you always get same brand at each prescription
ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12 too
Low vitamin levels are extremely common, especially if under medicated as you currently are
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Was test done early morning and last dose levothyroxine 24 hours before test
Graph showing TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5
gp-update.co.uk/SM4/Mutable...
I currently take 100 mcg the brand says Northstar I assume that is the brand but yes it's always the same brand. My Vit D, folate, ferritin and B12 were normal although I have not seen the print out yet. My bloods were not done in the morning as they usually do they gave me a 12pm appointment this time and I had taken my levo that morning as instructed by the doctor. My doctor said she cannot up my strength of levo until the endocrinologist emails her back. Ive not felt well enough to work and literally dragging myself around.
ALWAYS test thyroid as early as possible in morning, ideally before 9am and always last dose levothyroxine 24 hours before test
Please add actual thyroid and vitamin results when get printed copy of results
Just testing TSH and Ft4 is completely inadequate
Ft4 will be false high if you took levothyroxine before test
TSH would be even higher if tested at 9am
See different GP and request 25mcg dose increase in levothyroxine
If GP refuses
You could tell GP (a white lie) that you forgot to stop taking your biotin supplements and therefore the test is invalid
Biotin can falsely affect test results
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...
Re dose increase
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
Explain you want to stay on same brand levothyroxine and they don’t make 25mcg tablets …..so request new prescription is to add 50mcg tablets and that you will cut in half to get 25mcg dose
List of different brands available in U.K.
My Vit D, folate, ferritin and B12 were normal although I have not seen the print out yet
Did you get your actual results
Haven't been well enough to actually walk to the surgery thats how poorly I feel. My husband can drive me there next week as he's on leave.
SlowDragonAdministrator
As you have Hashimoto’s are you on strictly gluten free diet
If not, request coeliac blood test done if not already been tested
You should have had coeliac blood test at diagnosis of autoimmune thyroid disease
I just got off the phone with another GP at my surgery he told me my TSH is 5.2, the other doctor told me 4.8 I won't even bother going there. Anyway this doctor has increased my Levo another 25mcg every other day. Not sure why the other doctor has left me for two weeks without any increase but hey ho. I'm finally getting there thank God cause I feel just rotten today.
You may find it better to cut 25mcg tablet in half and increase by 12.5mcg everyday
Get a weekly pill dispenser to make it easier
Likely to need further increase in levothyroxine after this
That’s ludicrously small dose increase with TSH over 5
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
ALWAYS test early Morning and last dose levothyroxine 24 hours before test
Are you currently taking any vitamin supplements
Suggest you get vitamin D tested now
Come back with new post once you get results
Aiming for vitamin D at least around 80nmol and around 100nmol maybe better
If vitamin D is under 25nmol contact GP as they must prescribe a LOADING Dose of 300,000iu in total over 6-8 weeks and retest again at end of the course
That’s 5000iu per day over 8 weeks or 7000iu per day over 6 weeks
See NHS Guidelines on dose vitamin D required depending on test result
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 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 hashimoto’s 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...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
I take vitamin D daily as I was diagnosed as deficient a few years back.
How much vitamin D are you currently taking
How low was vitamin D when GP first prescribed
Test twice year when supplementing vitamin D
Hi there, I finally got my results print out. Free T4 13.4, Free T3 3.4, TSH 5.2, Serum Vit B12 355 ng/L, Serum folate 3.4ug/L, Vit D 65.8nmol/L, Serum Ferritin 15ng/ml
Free T4 13.4,
Free T3 3.4,
TSH 5.2, Serum
Can you add ranges on the Ft4 and Ft3 results
(figures in brackets after each result)
Make an appointment with your GP
With TSH over 2 you need 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each dose increase or brand change in levothyroxine
Always test early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Which brand of levothyroxine are you currently taking
Do you always get same brand
Low ferritin
cks.nice.org.uk/topics/anae...
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Are you vegetarian
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
An article that explains why Low ferritin and low thyroid levels are often linked
preventmiscarriage.com/iron...
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.
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...
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...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
SlowDragonAdministrator
Vit B12 355 ng/L,
Serum folate 3.4ug/L,
Vit D 65.8nmol/L,
Serum Ferritin 15ng/ml
Ferritin is deficient
Folate probably is deficient (please add range on folate)
B12 and vitamin D are insufficient
Vitamin levels are poor BECAUSE you are hypothyroid and in need of dose increase in levothyroxine
When hypothyroid we frequently develop LOW stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result
Optimal vitamin levels are
Vitamin D at least around 80nmol
B12 at least over 500
Folate and ferritin at least half way through range
GP should be doing full iron panel test for anaemia
Almost certainly need iron supplements
Folate. Likely low enough for GP to prescribe folic acid
B12 and vitamin D - you will need to supplement
Come back with new post once you have seen GP and update us as to what’s been prescribed
SlowDragonAdministrator
Are you currently taking any vitamin D
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...
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,
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...
Vitamin K2 mk7
SlowDragonAdministrator
Don’t start any B vitamin supplements until seen GP
They may want to test for pernicious anaemia before starting on folic acid supplements
Assuming GP prescribes folic acid just add a separate B12 supplement 10-14 days after starting on folic acid
If GP doesn’t prescribe folic acid ……You can consider supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
If you get prescribed folic acid…..at end of folic acid prescription you can then consider taking a vitamin B complex going forward
Do NOT take folic acid and a vitamin B complex….only take one or the other
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both 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...
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, then 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...
Hi SlowDragon I went to see my GP yesterday. They have had a response from the Endocrinologist and they have stated to leave the 25mcg increase of levo to every other day and not to increase any further as TSH at 5.2 is not of any concern. I mentioned that my blood test was done at 12pm so it was likely my TSH was much higher if it had been completed in the morning but the GP stated that the NHS do not take this into account. However they have asked me to have another blood test to check for pernicious anaemia, gluten intolerance and inflammatory markers. They've booked this appointment for 3pm in the afternoon shall I request a morning appointment as surely my TSH will appear lower again. They are also referring me for a gynaecology appointment to check for fibroids and endometriosis.
Strongly recommend you see different endocrinologist privately
Vast majority of endocrinologists are diabetes specialists and useless for thyroid
On levothyroxine TSH should ALWAYS be below 2
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
tukadmin@thyroiduk.org
Roughly where in U.K. are you
Some private endocrinologist are still doing consultations on zoom so distance no object
But first ALWAYS Test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
How much levothyroxine are you currently taking
How long at this dose
Are you working on improving low vitamin levels
Strongly recommend getting FULL thyroid and vitamins tested 6-8 weeks after last increase in levothyroxine
Come back with new post once you get results
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5
gp-update.co.uk/SM4/Mutable...
Persevere - have all guidelines printed and be ready to quote them
healthunlocked.com/thyroidu...
Hi Slow Dragon, so I got partial results on new blood test taken last Thursday. If you remember several weeks ago I stated I have been on levo 100mcg and my TSH was up to 5.2 so my doctor had prescribed an extra 25mcg every other day. My new TSH level is now at 0.39. I am surprised that such a small increase in the last several weeks could bring my TSH level down so quickly. Is the something not right here x
Common for TSH to drop after dose increase
That’s why just testing TSH is completely inadequate
You need TSH, Ft4 and Ft3 tested ..NHS refuses to test Ft3
Recommend getting tested via Monitor My Health £26.10 with money off codes from Thyroid U.K.
But not point yet ….keep working on improving low vitamin levels
For good conversion of Ft4 to Ft3 we need GOOD vitamin levels
It will take many months to improve low ferritin
Levothyroxine is Ft4 and needs converting into active hormone (Ft3)
If Ft3 is not over range you are not over medicated
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
Likely to see TSH increase up a little over coming months as vitamin levels increase and conversion of Ft4 to Ft3 improves
However they have asked me to have another blood test to check for pernicious anaemia, gluten intolerance and inflammatory markers. They've booked this appointment for 3pm in the afternoon shall I request a morning appointment as surely my TSH will appear lower again. They are also referring me for a gynaecology appointment to check for fibroids and endometriosis.
Have you had test results back yet for Pernicious Anaemia?
Or coeliac blood test
Good you have referral to gynaecology
Endometriosis and autoimmune thyroid disease often go together
kaldascenter.com/blog/endom...
preventmiscarriage.com/endo...
Similarly fibroids linked to oestrogen dominance,
drlamcoaching.com/blog/shri...
Fibroids common with autoimmune thyroid
atlii.com/thyroid-and-fibro...
When I rang my surgery on Friday the receptionist said she wasn't supposed to give me results over the phone so I was lucky to get my TSH result. I did ask about Serum of Ferritin which has increased from 15 to 16. I thought I might be pushing it if I asked for any more as she said she could get in trouble. I believe the gluten test can take 5 days to come back I'm not sure what other results I am waiting for. I plan to call again maybe Tuesday. I know I had fibroids many years ago and they were shrunk back as I was having IVF at the time so when the referral finally comes through from the hospital it will be interesting to see if they are back..
Thanks I'm hoping to get the print out next week. I'm just waiting on gluten test to come back.
Optimal vitamin levels are
Ferritin at least half way through range- typically that’s at least over 70
Folate at least half way through range
Serum B12 at least over 500
Vitamin D at least around 80nmol minimum
Presumably GP has prescribed ferrous fumerate
How many per day
Plus increase in iron rich foods
How much vitamin D are you currently taking
Presumably not started B12 injections or daily B12 or folic acid yet….until had results from pernicious anaemia test
SlowDragonAdministrator
If coeliac test is positive you need to remain on gluten rich diet until endoscopy, officially 6 week wait
If coeliac test is negative can consider trialing strictly gluten free diet for minimum 3-6 months.
Likely to see benefits.
Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten 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.
On levothyroxine we need high enough dose to always have TSH below 2
Most people when adequately treated will have TSH around one or below and most important results are ALWAYS FT3 followed by Ft4
Looking for Ft3 at least 50-60% through range. On just levothyroxine that frequently means you need Ft4 higher at least around 60-80% through range
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
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