hi following on from my last post … I have my results. The gist was Dr wanted to reduce my dose from 125 to 100. Said my tsh was surpressed. Any advice appreciated. Sorry I’m not sure how to add to my original post.
Results 25.05.2023
TSH 0.08 mIU/L. L (0.55-4.78)
Free T4. 13.0. pmol/L. (11.5-22.7)
previous results 22.05.2022
Tsh. 0.03 mIU/L L. (as above)
Free T4. 22.0 pmol/L (as above)
thank you 😊
First question....How do you feel?
Without an FT3 reading being included it is almost impossible to draw any definitive conclusions.
As explained in your previous post TSH is not a reliable marker.....but how we get medics to admit they have been wrong for decades is another mountain to climb!
TSH reflects the overall level of thyroid hormones in the serum and was devised to test for hypothyroidism before medication was initiated.
However, it does not reveal the level of the individual hormones.....FT4 and FT3
I suspect your FT3 is out of kilter!
It is essential that we optimise vit D, vit B12, folate and ferritin to support thyroid function....have you done this?
Have you had thyroid antibodies TPO and Tg tested for thyroid autoimmune disease/ Hashimotos? This can cause fluctuating hormone levels
Life would be easy if we could simply rely on TSH as a marker....but it isn't and we cannot.
I suspect your GP is grasping at straws....not uncommon I'm afraid re thyroid disease
This link will give you more background info re hypothyroidism
thyroiduk.org/if-you-are-hy...
Suggest your next step is to test TSH, FT4 and FT3 together
This is one option if your medics refuse to test FT3
monitormyhealth.org.uk/thyr...
Other options
thyroiduk.org/help-and-supp...
Accurate labs will guide towards accurate dosing!
Strongly recommend getting FULL thyroid and vitamin testing
ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test
Were both tests done this way
FT4: 13 pmol/l (Range 11.5 - 22.7)
Ft4 is now only 13.39% through range
So on inadequate dose levothyroxine
Most people when adequately treated will have Ft4 at least 60% through range
Most important result is always Ft3
Request small increase in levothyroxine to 100mcg and 125mcg on alternate days as first step
Retest again in another 6-8 weeks
Do you always
A) get same brand levothyroxine at each prescription
B) always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Vitamin levels
As you are now on inadequate dose levothyroxine you’re likely to have low vitamin levels
request GP test vitamin D, folate, ferritin and B12 NOW
What vitamin supplements are you currently taking
When were vitamin levels last tested
If I understand the OP, this would be a decrease since the dose is already 125mcg daily and now being asked to decrease to 100mcg daily. Am I missing something?
that is correct 🙂
sorry
I read that as that …..you were previously on 125mcg last year and …..now on 100mcg
You’re saying you’re currently on 125mcg levothyroxine…..But GP now wants to reduce dose?
Just Refuse to reduce dose and say you are getting full thyroid and vitamin testing
Your TSH is not suppressed and Ft4 is extremely low at just 13% through range so you’re already likely not on high enough dose levothyroxine
Low vitamin levels tend to lower TSH
Test last year
tested in 2022 this year I would have taken thyroxine at 11pm the night before and test was done around 5 pm next day.
TSH was falsely low if tested at 5pm
And Ft4 false high if last dose levothyroxine was less than 24 hours before test
I can’t remember what time I was tested in 2022 this year I would have taken thyroxine at 11pm the night before and test was done around 5 pm next day. The only bits I’m on is omega 3 and I’ve never been tested for vitamins. I have now changed to taking thyroxine on waking (06.30) and trying to eat and take other pills a couple of hours later. Mostly it’s the same brand of thyroxine but occasionally it differs … can’t say I’ve noticed a difference. Dr took me from 125 to 100.
This is very unfortunate! It seems you need an increase of maybe 12.5 a day. It the "Ts" that matter, not the TSH. Do you have hypothyroid symptoms?I don't know where you are located, but staying on a consistent brand is very important. I am in the U S. and get the nake brand Synthroid so that I know I always get the same thing (unless the manufacturer messes up).
Recommend you Continue on 125mcg daily and get FULL thyroid and vitamin testing done before considering changing your doses
You already know your high cholesterol suggests you need dose INCREASE in levothyroxine
healthunlocked.com/thyroidu...
Request/insist GP test TSH, Ft4 and Ft3 together plus vitamin D, folate, ferritin and B12
Before considering reducing dose
Or
Alternatively…..tell GP you are testing privately first before you will consider reducing dose
ALWAYS Test early morning , ideally just before 9am, only drink water between waking and test and take that morning’s levothyroxine AFTER blood test
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...
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...
Both Medichecks and BH offer option to pay extra for private blood draw
I’m in the UK, Scotland to be precise. Only tiredness and I feel like I’m losing more hair than usual. Many years ago I had an overactive thyroid which became under active
So hair loss is frequently linked to low iron/ferritin
Request full iron panel test for anaemia
Are you vegetarian or vegan
Pre or post menopause
Low ferritin will frequently result in low TSH
On levothyroxine we must have optimal vitamin levels
Many years ago I had an overactive thyroid which became under active
So you presumably had Graves’ disease (autoimmune hyperthyroid) and had RAI treatment to knock thyroid out and now hypothyroid
Or alternatively Hashimoto’s (autoimmune hypothyroid) frequently starts with temporary hyperthyroid results and symptoms and thyroid breaks down releasing excess thyroid hormones……and ends up increasingly hypothyroid
Both Graves’ disease and Hashimoto’s frequently result in low vitamin levels
Both Graves and Hashimoto’s often respond well to reduction in symptoms on strictly gluten free diet/dairy free diet
I believe that my iron levels were checked at the same time as thyroid and were fine Doctors never mentioned graves or hashimoto’s - I was given tablets ….. can’t recall what they were called so long ago. Both my mother and grandmother had hyperthyroidism, they both had operations and were on thyroxine
ALWAYS get actual results and ranges on any vitamin results or thyroid results
Ferritin range is usually 15-150
GP would say ferritin of 15 was fine!
In reality thyroid patients on levothyroxine frequently need ferritin at least over 70
Ferritin below 30 is even classed as deficient by NICE
Iron/ferritin……both often low
But some patients, can have high ferritin due to inflammation of thyroid disease…..but very low iron levels …..hence important to test full iron panel
Similarly optimal vitamin D at least over 80nmol
Optimal serum B12 at least over 500
Optimal active B12 at least over 70
Folate near top of range
If you have online access to your test results…..look them up
If not….ring receptionist and request printed copies
Go collect results in 2-3 days
If not been tested ….get tested via GP or privately
Many, many thyroid patients need to supplement vitamin D, magnesium and vitamin B complex continuously to maintain optimal levels
Initially likely to need separate B12 as well until B12 at good level
hi, I got re-tested yesterday and got results today, receptionist said results were normal and to test agsin in 4/6 weeks. My last dose of thyroxine was at 06.30 on Monday with bloods taken 09.00 next day. TSH 0.03 same as last time and free T4 20.9 last time was 13.0. No word of T3. Got routine bloods …sodium, potassium etc and b12 which was 224, serum folate 3.90* and ferritin 46. There was a note* may be folate deficient
TSH 0.03 same as last time and free T4 20.9 last time was 13.0.
No word of T3.
Got routine bloods …sodium, potassium etc and
b12 which was 224,
serum folate 3.90*
ferritin 46.
There was a note* may be folate deficient
Please add ranges on B12, folate and ferritin
B12 looks extremely low
Ferritin inadequate
Folate deficient according to note
You need vitamin D tested too
NHS easy postal kit vitamin D test £31 via
First step is to get all four vitamins improved to OPTIMAL levels
Serum B12 (NHS test) at least over 500
Folate near top of range
Ferritin at least over 70
Vitamin D at least over 80nmol
What vitamin supplements are you currently taking
For GOOD conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we need optimal vitamin levels
B12 - 224 pg /mL (>200)
Serum folate - 3.90 ng/ml L. (>5.50) note at bottom page say 3.5 - 5.5 may be deficient. Interpret in clinical context i.e is there unexplained anemia or raised MCV …….. at the end consider trial of replacement therapy.
Ferritin - 46 my/mL (30-480)
Ca you suggest where best to purchase vitamins , which brands are good ps. Thank you
I’m not taking any vitamins at the moment 😊
So you are going to need to start
B12 is so low GP should ideally test for Pernicious Anaemia before starting either B12 injections or daily supplements on prescription
Folic acid on prescription should not be started until a day after first B12 injection….or a week after starting daily B12 supplement
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 and add a separate vitamin B Complex after a week
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...
once you finish folic acid prescription
look at starting daily vitamin B complex
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...
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....
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...
Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 is good enough can lead to severe neurological problems.
en.wikipedia.org/wiki/Subac...
It is vital if you intend to supplement both B12 and folate that B12 is started a week before the folate.
Ferritin is very low, especially for a bloke
Are you vegetarian or vegan?
Request GP do full iron panel test for anaemia
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
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.
healthunlocked.com/thyroidu...
Posts discussing Three Arrows as very effective supplement
healthunlocked.com/thyroidu...
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...
Heme iron v non heme
hsph.harvard.edu/nutritions...
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
Come back with new post once you get vitamin D result
Likely to also be low
Government recommends everyone in U.K. supplement vitamin D at very least Oct to April
Most thyroid patients need to supplement continuously and at higher dose than normal
should I therefore just start taking vitamin d regardless? Doctors phoned again today and have put me on 5mg folic acid for 2 months.
As explained above…..start a separate B12 FIRST
Highly effective B12 drops
natureprovides.com/products...
After a week on B12 drops daily then add folic acid
improving folate when B12 is very low is not a good idea.
Taking folate before B12 is good enough can lead to severe neurological problems.
en.wikipedia.org/wiki/Subac...
It is vital if you intend to supplement both B12 and folate that B12 is started a week before the folate.
B12 ordered and on its way and also vitamin D test ordered - thank you for details 😊
vitamin D results as follows
25-hydroxyvitamin D3 …. 25.3 nmol/L
25-hydroxyvitamin D2 …..2.8
Total 28.1 - deficiency
I’ve not started folic acid yet, have been taking b12 for almost a week. Was very unwell last night, woke up extremely hot and covered in sweat and couldn’t focus as eyes kept moving ….was horrid, felt very nauseous but wasn’t sick but spent hours on the loo. Sorry all a bit graphic. Whether this was a bug or a reaction I’ve no idea! Should I forward my Vit D results to dr? Thank you
yes you should forward vitamin D result to your GP
You require LOADING dose vitamin D
That’s a total of 300,000iu vitamin D over 6-8 weeks
GP would prescribe 20,000iu tablet once or twice week
You could choose to take 5000iu daily for 8 weeks
Or 7000iu per day for 6 weeks
What ever you choose important to retest at end of course
You will require ongoing daily vitamin D indefinitely
NHS Guidelines on dose vitamin D required
See Loading dose
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 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, 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...
Maintenance dose
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
Whether this was a bug or a reaction I’ve no idea!
See how you are over next couple of days ….then add folic acid
Test vitamin D first
We should only add one supplement at a time…..then wait 10-14 days to assess before adding another
Bloods Tested again and results are
TSH <0.01 mIU/L (0.55-4.78)
FreeT4 20.8 pmoI/L. (11.5-22.7)
Vit B12 is 637pg/mL (200)
Serum folate 17.00 ng/ml. (>5.50)
Ferritin 62 ng/mL (301480)
Can I have your thoughts ps. I’m currently taking Vit d spray, b12 drops and I have about 2 weeks left of folic acid tabs
Thank you
Doctors never mentioned graves or hashimoto’s - I was given tablets ….. can’t recall what they were called so long ago. Both my mother and grandmother had hyperthyroidism, they both had operations and were on thyroxine
U.K. medics rarely refer to overactive thyroid as Graves’ disease…..or to under active thyroid as Hashimoto’s…..both are autoimmune and autoimmune diseases run in families
sounds like Graves’ disease ……given Radio Active Iodine and have to isolate for 3-5 days…..while thyroid is destroyed by RAI
btw, thank you for all the info, its very helpful 🙂
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
T4 therapy
ncbi.nlm.nih.gov/labs/pmc/a...
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
LEVO DOSE SHOULD NOT BE DETERMINED BY TSH
Diogenes/Toft paper:
bmcendocrdisord.biomedcentr...
healthunlocked.com/thyroidu...
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
LlINK TO PAPER:
Should I increase Levo?
TSH going up, normal T3
NDT help and advice desperately needed, please?
new test results and dose review advice.
