I haven’t posted in a long while as my hypothyroidism seemed to be well managed up until last year. Last Autumn I started to feel more unwell with tiredness, brain fog, feeling cold etc. and requested a blood test. The results in October were TSH 2.66 (0.2-4.3) and the GP agreed to a rise in levothyroxine from 125mcg to 150mcg. I started to improve and by January felt really well, full of beans. It was a revelation to feel so well and not tired all the time! I was retested towards the end of January and my TSH was 0.05 miu/L(0.2-4.3), T4 15.9pmol (7.8-18) so my surgery reduced my dose to 125mcg again. This blood test was in the evening despite me telling the receptionist I needed a morning test but she disagreed. My next blood test was due end of April but I was feeling so bad again I requested an earlier blood test hoping they would let me increase my levothyroxine again. However my results have come back and although my TSH has risen slightly it is only 0.12 miu/L (0.2-4.3), FT4 is 12.1 pmol/L (7.8-18) and FT3 is 4.75 pmol/L (3.5-6.8). I have a doctors appointment on Thursday and my patient record suggests sub clinical hyperthyroidism so I am dreading them keeping me on the same dose or worse reducing it further. I am dragging myself through the day and can’t go on like this. I was thinking of asking for a full blood count to check iron etc. but is there anything else i should be considering please? What could be giving these results but leaving me feeling so awful? I had antibodies tested when first diagnosed but should they be tested again? Could going gluten free help? Willing to try anything as my life is severely impacted and I want to do a Masters in the autumn but can’t like this. Thank you to anyone who can help.
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Chelidonium62
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What is giving you these results and leaving you feeling so awful is under-medication.
Those results should be much, much higher than that, in at least the top third of the range.. But your doctors is dosing by the TSH. and as that's all he looks at he has no idea that that is always, always doomed to failure.
TSH is not a thyroid hormone. It is a pituitary hormone and not very reliable, especially when it gets below 1.
They might give you some ideas on how to educate your doctor.
As for the timing of your blood test, I've never been able to fathom out what goes on in the heads of these medical professionals. Either they really don't know that the TSH levels vary throughout the day - which would be weird enough in itself - or they indulge in magical thinking and believe that even though the TSH levels vary throughout the day, the results of a blood test will magically be the same no matter what time they take the blood. Doesn't give you much confidence in the rest of their knowledge, does it.
Thank you greygoose, really appreciate your thoughts. I will read through the links tomorrow. I don’t have much confidence in the medical professionals especially when I never get to speak to the same one. I feel I know more and certainly know how I feel, but am not very good arguing my case so hopefully this will give me a bit of ammunition, especially those percentages and the links. I will stand my ground when booking the next blood test; it was complicated by trying to book at the same time as my husband was trying to book one. I’ll update my post after the appointment. Thanks again!
The results in October were TSH 2.66 (0.2-4.3) and the GP agreed to a rise in levothyroxine from 125mcg to 150mcg.
I was retested towards the end of January and my TSH was 0.05 miu/L(0.2-4.3), T4 15.9pmol (7.8-18) so my surgery reduced my dose to 125mcg again
This blood test was in the evening despite me telling the receptionist I needed a morning test
Just dosing by TSH is completely incorrect
And just testing Ft4 is inadequate
NEVER agree to a blood test that isn’t first thing in the morning and last dose Levo 24 hours before test
Free T4 (fT4) 15.9 pmol/L (7 - 18)
Ft4 80.9% through range
How long before test was last dose levothyroxine ?
Which brand of levothyroxine were you taking for 100mcg and 50mcg tablets
Which brand is 25mcg tablet
When were vitamin D, folate, ferritin and B12 levels last tested
Please add results and ranges
Exactly what vitamin supplements are you taking
Results now
Were these tested correctly
Last dose levothyroxine 24 hours before test
Free T4 (fT4) 12.1 pmol/L (7 - 18)
Ft4 only 46.4% through range
Free T3 (fT3) 4.75 pmol/L (3.5 - 6.8)
Ft3 worse at 37.9% through range
Suggests inadequate dose
Request/politely insist on increasing to 137.5mcg daily
Retest in 8 weeks
or see knowledgeable endocrinologist if GP won’t agree increase
Roughly where in U.K. are you
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Thank you SlowDragon. I’ll get those results and brands posted tomorrow (run out of energy tonight) but done last October I think. I’m in North Yorkshire. Thanks for replying and I’ll post tomorrow while doing my preparation.
I just wanted to weigh in and say how right you are about morning blood tests. Years ago at a 10.30am endo appointment I was told to go and give blood for a thyroid test immediately. I pointed out I'd taken meds under two hours ago. Told doesn't matter, "I can extrapolate". I wasn't given a choice. Those really high results went on to my medical record and were thrown back at me for the next fifteen years. No one would listen when I tried to explain what had happened. Never again. Stand your ground and only give blood at the correct time!!
My last dose of thyroxine was before 24 hours for the latest test. All my tablets are Teva brand. I now realise I haven’t had my vitamins, iron etc tested in a long time. Not done in October as I thought. I’m not taking any supplements so I obviously need to get onto that and get some. I will ask for these to be checked to get a fuller picture and I am going to ask for these dosage you suggest and for a referral to an endocrinologist. There is one on the Thyroid Uk list who is NHS& private. Thank you for the comprehensive advice.
Its interesting because I am sub clinical hyperthyroidism with similar results and I feel perfectly fine, its just my BP and HR are high so am on beta blockers but no other drugs.
We are all different, I dont believe you can take the % of each range value, and say you should be in the middle. Look at your nutrient levels instead?
Thank you again to everyone who responded with such helpful advice. My appointment went well, the doctor really seemed to listen and has ordered blood tests for ferritin, folates, vitamin levels D and B, and a diabetes test. He agreed to a dose update to 137.5 mcg as SlowDragon suggested, and is going to test again and review in a month or so. I asked about antibodies tests and he will consider that at the review depending on the other results. As I was fearing a dose reduction I feel like this was a good result. I can push for more tests and a referral next time if necessary. Just hope I get him again. It was good to come across as well informed and be able to put my case well, so thanks again.
I'm glad you're making some headway with your doctor, but SHOCKED that he will only 'consider' doing the antibody testing. I mean come on, are they meant to be healing people or saving the NHS money? Grrrrr. Makes me spitting mad
i don't find it shocking that they haven't immediately done TPOab in this instance . It's a pragmatic choice about agreeing to spend limited money on tests where the results might make a difference to treatment/ outcome , and not doing so when it doesn't .
once someone has already been diagnosed as hypothyroid and prescribed levothyroxine for life , then knowing whether the cause is autoimmune, or not, makes no significant difference to the management of it.
so from a 'how to get this patient in front of me better quickly' perspective , it is quite understandable that an NHS GP is not willing to order TPOab test at the moment .
The GP in this instance has agreed to the more useful tests / dose adjustments, and not spent money they didn't need to on something that makes no practical difference at this point.
yes i'd rather they tested 'all of us, for all the antibodies, all the time' ... the information gathered would come in very useful for research / improving understanding of autoimmune diseases , but the NHS budget is always going to be limited and overstretched.
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