Advice request for interpreting TSH and temperature results

I have had a diagnosis of Postviral Fatigue Syndrome for 13 years (I fit the criteria for ME except I don't have any pain worth talking about!). I've always wondered about adrenal fatigue and possible hypothyroidism and asked for TSH and Free T3 and 4 tests (when I looked them out this morning, I was shocked to see that it was back in May 2011!). The lab refused to do FT3 based on the TSH and FT4 result. My results were:

TSH 1.69 mIU/l (0.34-5.4)

FT4 13.2 pmol/l (9-24)

These are "low normal" but, of course, because they're within the normal range, my doctor won't consider any treatment.

Thyroid UK site on the interpretation of TSH Blood Test results suggests that, with TSH between 0.1 and 2, we can make a "presumptive diagnosis on clinical grounds and basal temperatures"; and that, if T3 & T4 are at the lower end of the range, we should consider the diagnosis confirmed.

When I remember to take my basal temperature, which is not often(!), it's around 36.5 C (if I'm remembering correctly!).

Recently (after some advice on Facebook via Stop the Thyroid Madness), I've been charting my temperature 3, 6 and 9 hours after wakening, to check fluctuations of over 0.2 degrees F. My average temperature over those 5 days is 36.3 C / 97.3 F, with fluctuations between 0.2 and 0.4 F. According to STTM, this means I need both adrenal and thyroid support.

My problem is - if my doctor won't entertain treating me, is there a way to treat myself?

Sorry this is so long and detailed. I hope someone has the energy and wherewithal to help!

Thanks.

Alison

8 Replies

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  • If you do a search for "adrenal fatigue" there is lots of information on self-help measures. I would really recommend looking into that.

    Other things you might want to look into are iron, ferritin, B12, folate and vitamin D. These can also cause issues with thyroid as well as having their own symptoms surprisingly similar to hypothyroidism. It is worth getting all these checked because, if you do manage to get thyroid treatment, your body might have difficulty using the thyroid hormones if you are deficient in any of the above.

    I have noticed significant improvement since treating my vitamin D and B12 deficiencies, although getting proper thyroid treatment has helped too.

    You will have trouble trying to get your GP to treat you however, if private treatment is an option, you can obtain a list of sympathetic doctors who know about thyroid disorders from the main Thyroid UK website by filling in this web form thyroiduk.org.uk/tuk/forms/...

    I hope you get the help and treatment you need.

    Carolyn x

  • Thanks for that Carolyn.

    I guess I'm also asking for confirmation from those of you with more knowledge if there *is* a degree of hypo going on for me. And, if so, how do I persuade my doctor of it?!

  • Hi Alison,

    I don't think your GP can 100% conclude that you don't have hypothyroidism for the simple fact that you did not have your T3 levels checked. Some people do not convert to t3 and their tsh can remain low ish like yours. Perhaps because the pituitary gland itself is suffering the effects of hypothyroidism - I am not sure on this reason - perhaps someone else can clarify?

    But people certainly can end up with myxoedema and a perfectly normal/low tsh. Perhaps bring this up with your GP. For the lab to turn around and refuse to check it is highly irresponsible and unprofessional of them. If a doctor has requested a test then who are the lab to dictate whether they will do it or not?! Although unfortunately this is common place across many labs I believe. But I have very strong feelings about it! :-) this has happened in my family and fortunately in my case my GP put a note on the blood request about family history of low t3 with normal tsh so they did actually check mine. But if labs just continue to refuse to check it, how will people with no FH ever get diagnosed?!it will never get picked up. Sometimes there will be no FH as things have to start going wrong somewhere!

    Talk to your GP about a conversion problem and ask for this be 100% ruled out.

    Hope this helps! Xx

  • How about some of the symptoms like swollen scalloped tongue and black floaters in your eyes? Do you have these? Dr S I think believes these to be pathogonomic of hypothyroidism.

  • Maybe you could see dr s if you can afford to? He is actually a virologist so your GP shouldn't kick up too much fuss considering your current diagnosis.

  • Also remind your GP that lab ranges supposedly fit 95% of the population and you could well be one of the 2.5% of people whose normal t4 levels sit above the 'normal' range. But unless you had a test years ago when you were well you will never know what your own personal level is supposed to be. Can you get copies of all your blood results and sift through them and looks for clues? Any trends like dropping t4 levels perhaps?

    It is also thought that thyroid chemistry has actually never been validated but perhaps this might be one step too far for your GP to cope with!!

  • I do have both scalloped tongue and dark floaters (the latter only recently appeared). Who is Dr S, DiamondFire?

  • Hi Alison, I will message you as I am unsure if I'm actually allowed to post his name on here, although here everyone knows who he is :-)

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