Had bloods done before Xmas, but GP is not ringing me till 17th JanI'm on 20 MCG T3 X2 a day ( 40mcg)
My T3 is at 5.4 ( 3.8 - 6)
My T4 is at < 5 ( 7.8-21)
TSH is now 34 ! (0.35-4.7)
I tried taking a small dose of levo with my T3 but it made me feel horrid, I can't convert hence the T3, any advice please?
Is TSH 0.34 or 34 as 34 is really quite unusual high with good FT3 even when FT4 low.
Do you feel well with current results?
Do you have a endocrinologist & Is GP aware you take T3 only? GP likely confused by results and may need endocrinologist to advise.
How long have you been on T3?
Have you always had issue with all levo? Have you tried different brands?
You have pernicious anemia? So your B12 regularly tested? Have you tested folate, ferritin, & vitamin D recently?
I've not been officially diagnosed with PA (long story) I was on NDT for about 4 years and felt great, then COVID happened... Then last year my TSH went up to 130 ! I thought I was dying ! So GP put me on the T3 which the pharmacy changed to capsules in July, I'm going to ask GP to change me back to tablets as I like to tweak my dose if needed. So yes TSH is up again to 34, I'm stumped. Will ask for a referral to endo again but last one I saw was useless.
What were your last results for ferritin, folate, B12 & D3? Low levels of these vitamins can cause intolerance of thyroid hormone replacement.
GP refused to test D3, said labs won't do it unless I have bone problem lol, I take 2000 iu daily my self. In July 2021 my b12 was 187.05 (155.87-1355.4) they px cyanocobalamin, I said this would raise my levels but not prove absorption, so in December 21 levels were 342.92, nuff said . May 2021 I started the T3 then in may 22 pharmacy changed it to capsules as more cost effective!
Just try a different GP at the same practice. I believe according to NICE as thyroid patients they are supposed to check our levels annually. If the worse comes to the worse like many here you can buy private tests from somewhere like Medichecks. We have to do that to feel well.
I'd put money on you having low ferritin and folate.
I will ask about these tests when he rings me I've only been with the practice about a year so haven't met all the all the docs yet 😅 although I've used medichecks in the past, docs would not entertain the results as they said they didn't recognise the labs 🫣 I've had hashis for 8 years, I'm used to doing battle .
Doctors will only treat a true deficiency anyway and yes would want to retest in that case. We need optimal vitamin levels which GP's know nothing about. Easy enough to buy supplements over the counter and raise levels.
How long before test was last dose
Capsules don’t allow you to try smaller doses
Ask tablets back and retest in 6-8 weeks
You could try splitting as
20mcg waking, 10mcg mid afternoon and 10mcg bedtime
Or try 10mcg waking, 10mcg noon, 10mcg approx 5-6pm and 10mcg at bedtime
You may need dose increase
Many people on JUST T3 would find 40mcg too low
As you have Hashimoto’s are you on strictly gluten free diet
If not have you had had coeliac blood test done?
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
monitormyhealth.org.uk/full...
10% off if go on thyroid uk for code
suggest you have the current costs of tablets v capsules to hand
20mcg tablets are cheaper than capsules…..and far more flexible
healthunlocked.com/thyroidu...
According to the pharmacist the capsules are cheaper, hence the swap, I have no idea of the cost of either, I take my T3 twice daily , early morning and mid afternoon, I find it keeps me awake if I take it later at night. Test was taken at 8.00am, before my first dose too. I'm not GF and don't want to take that route, sorry, the high TSH has me puzzled it's always been low, even suppressed, and I've felt well, but now feel rough. X
my guess is they had stock of capsules on the shelf, so cheaper for them, but technically maybe more expensive 🤷🏽♀️
Just got these
Screenshot
I removed image
Feel free to resubmit with endocrinologist name blacked out
20mcg twice day is equivalent of 160-200mcg levothyroxine
That’s absolute rubbish, they just make stuff up to suit themselves
bnf.nice.org.uk/drugs/lioth...
Adult Initially 10–20 micrograms daily; increased to 60 micrograms daily in 2–3 divided doses, dose should be increased gradually, smaller initial doses given for the elderly.
Haha I know , I chuckled to my self when I read it. And I didn't take my self off levo , I talked it through first with GP and we both decided it was best for me. Endos hey ?
Hi SlowDragon and @Calypsoplus
"20mcg twice day is equivalent of 160-200mcg levothyroxine
That’s absolute rubbish, they just make stuff up to suit themselves"
My endocrinologist also uses this calculation - of 4-5 times (he uses 5) T3 being equivalent to T4 (ie. 5 mcg T3 is equivalent to 25mcg T4) and so that's how he was going to work out my T4/T3 combination. It's not what happened in the end fortunately but that is the way he was, and still is, thinking - and I have had other endocrinologists work this way too. Please can you help me by explaining why it is rubbish so that I can be better prepared when I speak to him next time?
Many thanks.
1)Levothyroxine and T3 do different things.
2) many people on small dose T3 alongside levothyroxine need BOTH Ft4 and Ft3 roughly 70% through range
Some people are fine with LOW Ft4…..many people are NOT
So
Before adding T3 testing Ft4 to see where in range Ft4 is
We see so many times endocrinologist adds tiny dose T3 and doesn’t ask patient to start T3 SLOWLY
And also reduces levothyroxine by far too much
Assuming all four vitamins are tested and at optimal levels BEFORE starting T3
And, if necessary already on strictly gluten/dairy free diet
Testing early morning and last dose levothyroxine 24 hours before test (and always same brand)
Results BEFORE adding T3
A)
TSH 1.5 (0.2-4.5)
Ft4 14.5 (12-22)
Ft3 3.8 (3.1-6.8)
Increase dose levothyroxine further first before considering adding T3
B)
TSH 0.85 (0.2-4.5)
Ft4 16 (12-22)
Ft3 3.8 (3.1-6.8)
Don’t reduce levothyroxine. Add 5mcg T3 initially. After week or two add 2nd 5mcg dose T3 mid afternoon
Retest in 6-8 weeks. Likely to need further increase in T3 or levothyroxine
C)
TSH 0.5 (0.2-4.5)
Ft4 22.5 (12-22)
Ft3 3.8 (3.1-6.8)
Reduce levothyroxine by 12.5mcg per day and after 5-6 days add 5mcg T3. After week or two add 2nd 5mcg dose T3
Retest after 6-8 weeks
Even my endocrinologist thinks 25mcg levothyroxine = approx 15mcg T3
But it you were immobile/exhausted before adding T3 and start doing more …..you’re going to need more thyroid hormones
What we see far too often is levothyroxine being reduced 50-75mcg per day! And same day endo suggests starting 20mcg T3 same day
Far, far too heavy handed
T3 needs adding SLOWLY
It’s trial and error what dose and timings of doses
Thank you so much SlowDragon - that is really helpful. I have learned so much from you and others on this forum and that knowledge has given me the confidence to continue to question T4 and T3 hormone replacement doses. It is hard to maintain that confidence when you are not feeling well and so having things written down, with examples - like you have done in your reply to me above - makes everything so much better.
"What we see far too often is levothyroxine being reduced 50-75mcg per day! And same day endo suggests starting 20mcg T3 same day" - that is exactly what my current endocrinologist suggested last August. Because of this forum, I was able to talk him around to going very slowly, and I am still working to get the levels right but am going in the right direction with no major swings. He has delegated me to someone else now though (I wonder why!!) and she doesn't have any idea at all, so work-in-progress. Thanks again xx
Did you open the link I gave you with all prices included?
Pharmacies and medics don’t keep up to date
20mcg tablets are now CHEAPER than capsules and have been for several months
Yes thanks, I will have this to hand when GP rings, I'm going to insist he puts me back on tablets, I'm more than capable of tweaking my dose to suit, and then he can re test my levels in a couple of months .
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Some GP will accept private results if confident/familiar with lab ie if willing but most would rather ignore. They are however obliged to confirm by arranging own test. Ultimately there is no requirement for GP to run test but if you put your best argument they are risking falling short if they don't.
Your high TSH is unusual, I was also going to suggest using different lab as antibodies interference can cause this high level.
Dr may be implying you put yourself on T3 as they don't want to go on record as arranging it. I note the "claim" patient can't tolerate Levo phase.
Some of what written regarding FT4 and TSH will be low & slightly above range FT3 if just taken dose ect is actually more enlightened than what many maintain. Which is not saying much - I know.
Ask for a new blood test via different laboratory
Could be interference
ncbi.nlm.nih.gov/pmc/articl...
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