Hello, I'm new here and was recommended this site for it's wisdom around the thyroid.
I had a couple of private blood tests for thyroid function a year apart...the last one I received was flagged as suggesting my thyroid may be becoming underactive. The levels were:
TSH 1.45
T4 11.3
T3 2.86
Hypothyroidism runs in my family and I have been feeling extremely unwell for a long time (complicated by diagnosis of ME/CFS which confuses the picture sometimes). But when I saw my NHS GP she said they only go on the TSH. I also recently had a low cortisol blood test though when I re did one as a saliva test the results were normal. I have terrible time regulating temperature and regularly break out in drenching sweats from simply walking. The fatigue and nausea are the worst symptoms along with permanently cold hands and feet and shooting pains like hot needles.
Am wondering if anyone has any ideas regarding the direction of further investigations as going to my GP is like banging my head against a wall.
Thanks if you read all that!!
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clomo
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Your ME/CFS is certainly confusing the picture. ME sufferers often have a lowered FT3, and as this is the active hormone for health, obviously there can be consequences. The idea of giving ME sufferers thyroid hormones to boost their reduced FT3 is still controversial, as the relationship has only recently been discovered. The problem is that the condition doesn't also give altered TSH, so that if doctors go on TSH only, all seems normal, when it really isn't. If you could get a trial of 50 ug T4 for a limited period to see what happens then that would be useful. But an argument to convince doctors will be very difficult.
Thanks for your really quick reply....I have never heard of the link between ME and T3 so that is really interesting and will look into it. I don't have any treatment team or support for ME and have been left to cope as best I can. Do you think a private consultant would be more open to a trial run of T4 as opposed to NHS? Thanks again
You don't give the reference intervals (numbers in brackets after result) for these numbers but if they are typical your TSH is normal, fT4 low normal and fT3 low. I see a lot of results like these on this forum, it suggests your pituitary is not putting out enough TSH for your corresponding fT3, fT4 levels. Thus the TSH cannot be relied upon. Trialling levothyroxine (L-T4) would be a good idea although many patients in your situation end up needing some liothyronine (L-T3). It's very difficult to get a doctor to prescribe liothyronine so I'd definitely push for a trial of levothyroxine first, see how you go and take one step at a time.
Although many hypothyroid patients feel cold some also have poor temperature control and can feel hot and cold. I'm not in favour of tons of supplements but I would suggest you take a magnesium supplement as it may help with the pains. CFS tends to be a diagnosis when the doctor doesn't know what's going on. You might say a CFS/ME diagnosis tells you more about the doctor than the patient!
"You might say a CFS/ME diagnosis tells you more about the doctor than the patient!"
Yes, totally agree with this! There is not real attempt at help even though I am now almost completely house bound and most days am just dragging myself from bed to sofa and back again. If I can tidy and do an hour of a hobby that is a good day. But it has been 20 years and the positivity I had initially and the coping strategies for the isolation aren't really doing it anymore and am desperate to feel at least a little better but I find there is next to no help from various GPs.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.
As you have hypothyroidism in family, that is most likely Hashimoto's
Thanks SlowDragon...I had just found the full thyroid check including antibodies on medichecks and have the tab open as I type! Can I ask, can you have Hashimoto's with a normal TSH but low T4 and T3? I had my last thyroid blood tests done at Medichecks last time and so will re do but include antibodies this time, as well as researching the ME/T3 connection
Yes you can have "normal" TSH, FT3 and FT4, but still have very high antibodies. Sometimes just TG antibodies too (which NHS won't test unless TPO are high)
Low vitamins are extremely common, so important to test too
Thanks very much for this info, it's really helpful. My mum was left for years before getting the treatment she needed but only when her TSH went through the roof and even then they made her wait six months to see whether it would go back down on its own. I remember that time and she had to give up work and was very ill.
Thanks reallyfedup..I did mention secondary hypothyroidism but the GP basically shook her head...she insisted on more blood tests but when I checked the form saw she was only testing TSH again...you have all convinced me it is important to keep fighting for the right treatment...I may try and find a private endo who can be of more help
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