Hello, I am desperate for some help with my results. I have had all the symptoms of under active for the last ten years. My late mum, sister, late aunt and niece all take or did take thyroxine for underactive thyroid and so it runs in my family. Last year Feb 22 my test result came back with Serum TSH level low. GP unhelpful wouldn't prescribe Tyroxine and I was told to re-test a year later. I have done this and this time the test results were online in my medical records folder so I could actually see them and Serum TSH level is marked abnormal. Told by GP receptionist I have to wait another year and re-test!
Results, there were only these 3 tests
Thyroid peroxidase Ab conc <1u/mt test marked normal
Serum free T4 level 11pmol/L test marked normal
Serum TSH was 4.8mu/L test marked abnormal
I have requested the 2022 records to be printed out, told it will take 4 weeks!
I am beside myself as feeling so ill. This has been going on for so long I've decided to be more pro active and coming on here is the first step.
I wondered about private testing or seeing endocrenologists privately.
Any advice would help
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Maisiemophead
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Your fT4 is only 24% through range, we can only guess where your fT3 (the active hormone) might be...
I would suggest getting a test from Monitor My Health or Medicheck, 20% off at the moment, to see where your levels are and also get your antibodies checked if they haven't been done by GP, it would also be useful to get current folate, ferritin, B12 and Vit D levels if the GP hasn't
Or as you say you could find a private GP, doesn't need to be an Endo as your levels show you are hypothyroid, the thing is if you take this route you then might have a struggle getting the NHS to take over treatment and provide free prescriptions
I would certainly be pushing your GP to retest in 3 months and pushing for a trial of levo
Hi, I have sent for a Medicheck Advanced thyroid function test, so should have more info. Then I will try my GP again, if no joy, which is what I think will happen I will reconsider my next step.
Could also be low iodine intake. UK does not iodize salt and the only source of dietary iodine is milk and other dairy. There's been enough research to indicate that people are not getting enough iodine in their diet in the UK. Her antibodies are non existent. This doesn't mean she has Hashimoto without antibodies. It can just mean her iodine intake is inadequate.
🤷♀️Sounds like a family weakness... as far as I know there aren't any reliable iodine tests and if your thyroid is in decline adding it can speed up the demise
Iodine deficiency is also known to be associated with an increased risk of follicular thyroid cancer and anaplastic cancer. Other molecular mechanisms may also be identified
Since iodine deficiency is a major cause of hypothyroidism, breast cancer with distant metastasis may be promoted in part by reduced thyroid function, where slower tumor growth (precluding earlier diagnosis), yet increased invasiveness could be consequential. Iodine deficiency, therefore, may contribute to breast cancer and its progression directly within breast tissue, and secondarily by decreased thyroid function leading to metastasis.
I am so sorry you are having a rough time. BUT you are absolutely right! All of us who find themselves here are NOT neatly fitting the general NHS guidelines.
Doctors frequently under medicate as they have been given poor guidelines and if a patient’s TSH and thyroid hormones are not ‘aligned’ the thyroid hormone replacement is WRONGLY sacrificed to keep the TSH - a pituitary hormone in range.
And what is TSH? It’s a pituitary hormone that’s produced to stimulate the thyroid to produce thyroid hormones. So it is one of those eternal conundrums as to why so many so called intelligent people follow these guidelines without question.
Symptoms are an indicator of under medication. Blood tests should be calibrated to the patient and used as a guide to get you well. Doctors frequently do not (if ever) do the full suite of tests required to make a meaningful assessment and I would liken it to taking us (square pegs) chopping off the corners and stuffing us through round holes.
You will need to get a bit clued up on this to self advocate and you are absolutely in the right place. USE their own guidelines against them- there’s latitude in them but they rarely use it.
Look at the pinned post for NICE and NHS guidelines (the useful bits).
Every measure that has been put in place for thyroid dysfunction management has been a financial not a clinical decision. Those of us who don’t happen to fit the crude diagnostic and management model have to self advocate and get ourselves sorted - frequently pushing back on the doctors we might once of trusted and believed in.
'In range' analogy for you to show how wrong just being 'in range' is. Clarks have a shoes range for men and women starting at 2 going all the way up to 15. So we all know shoes are particular and need to fit, well so do the thyroid hormones we need they need to be calibrated to our needs not just falling within a range. 😉👍
Hi, thanks for reply, I'm 68, my sister, mum, aunt and niece all have problems and take thyroxine. My sister also has myasthenia gravis which is auto immune disease. I'm not vegetarian or vegan.
Hi thanks for the reply, I have ordered a Medicheck Advanced Tyroid function blood test and going to have the blood taken at a clinic. So fingers crossed I'll get more information.
Hi, just wanted to say it’s a really good idea to get ferritin, B12, folate and vitD tested. My GP ignored my TSH level too at top of range (5). I kept going back saying I was so very tired. I think I should have used fatigued as apparently fatigue is worse than tired! 🙄 They tested my iron levels and that was low, so I was prescribed iron for 6 months. It helped a bit. Eventually my TSH came in at 9.9 and they decided I had an under active thyroid. If I’d known what I know now I would have kept on at them to get diagnosed sooner. I saw NHS endo who tested the other vits. They were all low. So again, worth pushing to get them tested or do a home fingerpick test and go armed with the evidence. Most of us find that the NHS vitamins are rubbish, so do some research to buy your own if you can. Hope you get the acknowledgment that you have a thyroid problem very soon.
Hi, thanks for replying, I have ordered a Medichecks Advanced tyroid function blood test, and going to a clinic for the blood taking , so this should show all those things I think fingers crossed.
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