Hi everyone I'm a newbie and was hoping for some advice.
Brief history, following a few blood tests and after much arm twisting I persuaded my doctor to prescribe 25mg of levothyroxine as my TSH level was 6.13 and free T4 10.9.
Follow up blood test 6 months later TSH down to 3.55 but didn't test for T4 for some reason.
My mood has improved but my memory is still poor and I suffer occasionaly with getting a deep breath. My libido has suffered badly also but not sure this has anything to do with being Hypo.
I've asked my doctor if increasing my dose would further improve things and the response I got was my TSH is below 4.0 so we'll do another blood test in 12 months.
Can anyone offer any advice as I'm not convinced my doctor is correct.
Got my results back from Thriva ( excellent service by the way thank you for recommending ) although they said there was a problem testing for folate so unfortunately that's missing. Not sure at all if the other results depend heavily on it but here goes.
Active B12 - 62.3 pmol/L
Ferritin - 159 ug/L
FT3 - 5.81 pmol/L
TSH - 5.44 mlU/L
TgAB - 10.4 kU/L
TPOAb - < 9 klU/L
T4 - 96.7 nmol/L
FT4 - 15 pmol/L
Vitamin D - 60.4 nmol/L
Any feedback would be greatly appreciated
Written by
Charlyboy
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For a full picture you need TSH, FT4 and FT3 tested but often it's only TSH that gets done and this isn't a thyroid hormone, it's a signal from the pituitary. FT4 and FT3 are the thyroid hormones and these tell us if we are optimally medicated, FT3 in particular.
The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well.
Protocol when prescribing Levo is for a follow up test 6 weeks later, increase dose by 25mcg and retest 6-8 weeks later, then repeat until levels are where they need to be for you to feel well.
25mcg is a low starter dose usually given to children, the elderly and those with heart problems.
You need an increase in your dose of Levo and in support of this show your GP the following:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Levothyroxine doesn’t top up failing thyroid, it replaces it, so it’s important to take high enough dose
As an example....if, when perfectly healthy, your own thyroid made the equivalent of 125mcg levothyroxine....and this metabolism is controlled by pituitary sending messages - TSH (Thyroid stimulating hormone)
Then as your thyroid starts to fail (usually due to autoimmune thyroid disease) ....you might get diagnosed when your thyroid has reduced output to roughly equivalent of 75mcg levothyroxine
Pituitary has noticed there’s a drop in thyroid hormones in the blood....(that’s Ft4 and, most importantly, the active hormone Ft3) ....so to try to make more thyroid hormone ...pituitary sends out stronger message to thyroid - TSH rises up
When GP starts you on standard starter dose of 50mcg ....initially you feel a bit better ....as you have 75mcg from your own thyroid and 50mcg levothyroxine
But (here’s the bit many GP’s don’t understand)....levothyroxine doesn’t “top up” your own thyroid output.....well it does very briefly....but the pituitary very soon “sees” the levothyroxine in the blood....and TSH starts to drop
So at the end of week 6 ....TSH has dropped a lot. Your thyroid takes a rest ....has a holiday
So at this point you are now only mainly using the 50mcg levothyroxine....which is actually a dose reduction down from managing on 75mcg from your own thyroid before you started on levothyroxine
So you start to feel worse .....and are ready for next 25mcg dose increase in levothyroxine
Modern thinking ....and New NICE guidelines suggests it might actually be better to start on higher dose .....but many medics just don’t read guidelines ....
and many patients can’t tolerate starting on more than 50mcg and need to increase slowly.
Starting on 50mcg and stepping dose up in 25mcg steps, retesting 6-8 weeks after each increase. But we still very often need to increase up to full replacement dose
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.
Aim is to bring TSH down under 2.5 as absolute maximum.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I really had to push my doctor to prescribe anything at all and it now seems that the 25 mcg that was prescribed is doing little for me. Its so discouraging when there is a lack of willingness.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems.
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I really think I'm going to have to go it alone on this as my doctor shows little interest. Do you think its worth me trying to find a sympathetic Endocrynologist and pay privately. I'm getting really disheartened.
Your instinct not to believe the doctor's answer I think is correct.
Instead of looking at the results of the TSH alone, (T3 and T4 are rarely taken notice of) they believe if the result of TSH is 'somewhere' in the range that we, the patient, is on a suitable dose.
That is untrue, once on levo the aim should be a TSH of 1 or lower and your FT4 and FT3 should be in the upper part of the ranges (unfortunately, the latter two are rarely tested).
We have to 'read and learn' through questions/answers on this forum to educate ourselves and return to good health and be symptom-free.
GPs seem to be so poorly trained these days about dysfunctional thyroid glands. Before the blood tests were introduced (along with levothyroxine) we were prescribed NDT (natural dessicated thyroid hormones) and if we improved we were diagnosed and dose slowly increased. NDT means 'natural dessicated thyroid hormones' prescribed since 1892 - before that we died due to hypothyroid. NDT means 'natural dessicated thyroid hormones' made from animals' thyroid glands and are still popular today although in the UK, they've withdrawn this due to 'misinformation' by those we'd imagine would be more knowledgeable than many on this forum, but unfortunately are not. Considering that it contains all of the hormones our own healthy gland would do why would it be withdrawn? especially False Statements made to do so.
As a wise person on this forum once told me, the range for TSH, FT4 or FT3 is just that, a range. This has been calculated using data from many different people with different levels. One person may have a totally different level from another at which they feel well. So, being in range means zilch!
Some great advice for me to act on thank you all. General opinion is to get a new complete thyroid test. Can anyone suggest where I can get this and also vitamins, B12, cholesterol and testosterone total and free. I'd really like to cover as many bases as possible which might hopefully give me a better picture of myvthyroid health moving forward and also uncover the reason for lost libido.
Hundreds of us here all use Medichecks, Blue Horizon, Monitor My Health and Thriva so they would all be recommended.
Monitor My Health (the NHS lab in Exeter) has the least choice of tests, Blue Horizon and Medichecks has the most choice, you just need to look through the tests and bundles they offer.
I have used Medichecks and Thriva as do most people on here. I switch between them depending on what offers I can find. Medichecks does 20% off fairly often and you might be able to find a Thriva code if you google. Both work fine and both use the same labs to process samples as the nhs does. Just watch on the Medichecks thyroid ultra vit one - they’ve recently removed the folate element and it’s important to get that one done if you’ve not had it recently.
Once you’ve got results post them here for help. You could go private but it can get pricey - worth trying a different gp at your practice first or gathering print outs to links people post here and pushing your current gp. I have gone private but mainly because I want to have a baby and don’t have much time to faff around with &@-!ing annoying GPs dismissing me.
Important to test vitamin D, folate, ferritin and B12
Medichecks only offer these four now if pay for private blood draw...so would need nearby private clinic to do blood draw
They have list of clinics on their website
Blue horizon is similar to Medichecks, but includes folate and cortisol and can do DIY finger prick test
Thriva often cheap. Results slightly trickier to read (they need to amend their dashboard to make easier to read results) but members can help you understand results
Do you good people think I should stop taking the 25mcg until I get a blood test. I've been taking it for 7 months and although at first i did start feeling better it now doesn't appear to have any effect. Having read Slowdragon comment it now makes sense why.
No, you don't need to stop the 25mcg. Allow a gap of 24 hours between your last dose of levo and the test and take it afterwards.
Always make the earliest possible appointment to draw blood (TSH is highest then) and always get a print-out of your results for your own records and post if you have a query.
Ask GP to also check B12, Vit D, iron, ferritin and folate. Everything has to be optimal.
I’ve just seen your post and just wanted to let you know that your post resinated with me and that you are not alone. I can see you’ve had lots of great advice, I am struggling also with my mood, memory the list goes on! Dr has prescribed me with anti depressants however in two minds about taking them.
If you feel something is not right I would keep pushing or get tests privately which I have seen you have done, where did you order them from as I need to do the same.
When I initially visit my doctor and explained my symptoms I to was prescribed anti depressants. I can't explain why but I knew it was a wrong diagnosis and didn't even bother taking it to the chemist. I ordered from an online company called thriva after reading the advice on here.
Got my results back from Thriva ( excellent service by the way thank you for recommending ) although they said there was a problem testing for folate so unfortunately that's missing. Not sure at all if the other results depend heavily on it but here goes.
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