My under active thyroid issues are still ongoing and the dosage doesn’t seem to be correct even after many changes of dose! Previous test on 14th April my TSH was 9.82 (0.38-5.33) so they increased my thyroxine from 50mcg to alternate 75/50. Told me to come back after 6-8 weeks.
This new blood test dated 14th June is TSH 5.68 (0.38-5.33) which the receptionist told me is “borderline and much improved, no further action”
Isn’t 5.68 still higher than it should be? So not borderline? I still feel rubbish, tired, hair falling out, etc etc. do I ask for an increased dose? They haven’t tested any other thyroid functions unfortunately.
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Happygirly
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Typical dose levothyroxine eventually likely to need is around 1.6mcg per kilo per day
Approx how much do you weigh in kilo
Standard starter dose levothyroxine is 50mcg, usually dose is increased slowly upwards in 25mcg steps until all symptoms resolved, TSH is typically around one, Ft4 at least 60-70% through range and Ft3 at least 50% through range
ESSENTIAL To test vitamin D, folate, ferritin and B12 at least once a year
Thank you. My B12 is very low (175) and I’ve just had 6 loading dos injections with the next one august and every 12 weeks after that. April tests were
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
Haha try getting your B12 injections more than every 3 months. I even asked my neurologist if he could write and ask about getting them more frequently but he said they can be very awkward about allowing them more often. I've written a letter to my GP asking whether my low B12 is due to PA or if its just low dietary B12. If its PA I might have grounds for more regular jabs, if not then I can swivel.
Just a point, my surgery got their knuckles rapped for asking for my B12 to be tested when I had my recent bloods done. The lab said if on B12 injections, testing B12 is not clinically appropriate.
The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and it was never intended to be used once the patient was on any form of thyroid hormone replacement, as then you must be dosed and monitored on your t3 and T4 blood test results and ranges.
A TSH seen in isolation means absolutely nothing - and I read once on thyroid hormone replacement we generally feel at our best when the TSH falls down to under 2, and likely under 1 which should happen as the dose of T4 is increased in 25mcg stages with bloods every 6-8 weeks until symptoms are relieved and your T4 is likely in the top quadrant of the range as this should in theory reflect/ convert into a decent level of T3.
It is essential that you are monitored and dosed on your T3 and T4 levels and yes this likely means you'll need to run the appropriate blood tests yourself and then, if your doctor feels there is a need, s/he will advise the NHS laboratory to repeat the T3 and T4 blood tests and this could well be from the same laboratory, which of course is madness but there we are.
No thyroid hormone works effectively until our core strength vitamins and minerals are up and maintained at optimal levels so you need also to see current ferritin, folate, B12 and vitamin D run.
I know now I feel at my best with a ferritin of around 100 : folate at around 20 : active B12 75 ++ and vitamin D 100 :
Everywhere i read suggests ferritin needs to be over 70 for thyroid hormone conversion.
T4 - Levothyroxine is a storage hormone and inert, and needs to be converted by your body into T3 the active hormone that runs the body and it is low T3 that causes symptoms of hypothyroidism, just as too high a T3 for you and you may experience symptoms of hyperthyroidism.
If you go into Thyroid UK who are the charity who support this forum you will find details of the private companies who can run a full thyroid blood panel to include the vitamins and minerals and then when you have the results and ranges, forum members can advise on the results and how you can take this forward with your primary care doctor,
My private only Endocrinologist explained to me that your TSH needs to be under 2.5. Anything above and you’ll be feeling symptoms. A healthy persons TSH is around 1.00. This is the aim if possible when on thyroxine medications. But more importantly to get your T4 and T3 levels optimal for you. I’d suggest a full thyroid blood test T4,T3 and TSH. Monitor My Health will do it for £29 max. Some promotional times it’s cheaper. See if you are converting enough T4 to T3. Also check your vitamins B12, ferritin, Vit D and folate are all optimal.
They haven’t a clue have they? I would get get printouts of your lab results. You are legally entitled to them. Even though the TSH is the least reliable measure of thyroid function it’s still tells enough to know you are not on a full therapeutic dose - Way too high.
Most important diagnostic tool? Your Symptoms - the bloods provide additional info but your symptoms are the first and foremost diagnostic tool. It’s just GPs lack ability, so use blood tests which are incomplete and that they are unable to interpret anyway. Labs give them a standard interpretation that applies to people with functioning thyroids. This caused problems for me in the early stages after diagnosis as GP just read off the labs.
I’ve argued for dose increase whilst in range. I put how I did it on my profile so people can get to it easily. I debunk the awful term ‘normal’ too. They are ridiculous you need a dose increase.
Be your own advocate- read lots of lived experiences other’s experiences will help you become more informed on your own then try to read a book (it takes as long as it takes). Then keep an eye open for papers discussed on here that could be useful in countering medical ignorance. It’s hard work ploughing into new subjects but it can be done. 😘👍
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Fluctuating TSH
TSH below range
TSH high level before transfer :(
