Hashimoto's (high TPO antibodies) but test results within range

Dear All,

Below are my test results since 2012 (I hope they appear OK - I tried to paste them in as a table) - I 'd be grateful for anyone's comments/advice on them. I have had many of the hypothyroid symptoms (mainly joint pain and fatigue, but so many of the others too - similar to fibromyalgia) since I was in my early 20's (lower back pain since 13) and I'm now 56. It was only in 2012 that I got referred to a rheumatologist, and only then was it was found that I have TPO antibodies >1000 (so I assume Hashimoto's). I then saw an endocrinologist who did a whole battery of tests including short synacthen test (basal level of cortisol was low in short synacthen test – 209 when 200 is cut-off) and then an Insulin Tolerance Test (40 min cortisol was 623, above the 550 nmol/L cutoff). My TSH and T4 were as below, and the Registrar who I saw initially said I would be put on a low dose of Levothyroxine. But when I saw the Endo, he said that because all the results are within range, they would discharge me and I should just be monitored 6-monthly for T4 and TSH by my GP.

I have read Dr Lowe's article on this site and I believe I may have too little thyroid hormone regulation - but what can I do about it? I monitor my own FT3 by paying for tests through Blue Horizon, and so far these are within range (though below the range mentioned on this site thyroiduk.org.uk/tuk/te...

I am going to my GP on Friday, mainly to discuss the results of the rheumatology scan on my feet (I get burning and tingling in my soles and toes) but I thought I would also discuss these results with him. The rheumatologist hasn't given up on me but I think she might discharge me next time (she has given a diagnosis of Possible Psoriatic Arthritis ). I was on Hydroxychloroquine for 6 months last year for my finger joints, but I didn't see a huge improvement - although I feel that my back and hips were less painful and I had a bit more energy, she said it shouldn't have had an effect on this. It does seem logical to me though, that a drug which suppresses the immune system could suppress the action of TPO antibodies?

I know it's difficult for the doctors as I don't have any really severe, obvious symptoms which would help them with a diagnosis, but my whole life is lived to adjust for being less well than I should be and no-one seems to understand what this actually means - and I am so tired of this.

These are my results - I don't know if anyone has any advice as to what I should ask of my GP? With these results, do you think I could ask for thyroid hormone regulation - and what exactly does this mean? At my GP practice they only seem to know that as long as TSH and T4 are within range, all is OK and I don't need any treatment.

Thank you!

TSH T4 FT3

Range 0.4-4.5 10.0-24 3.1-6.8 (Thyroid UK 4-8.3)

01/08/2012 4.14 14.5

31/01/2013 3.9 13.5

08/08/2013 2.6 14.6

21/08/2013 4

21/02/2014 2.5 16.3

07/04/2014 3.7

07/08/2014 2.11 16.6

14/08/2014 3.8

05/02/2015 1.55 13

13/02/2015 3.9

Sorry - the results I posted as a table didn't come out! Basically, the rows with only a single result show the FT3 result. The others are TSH and T4.

Thanks!

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8 Replies

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  • Hi Jemma

    I have combined your posts for you. :)

    L

    x

  • Many thanks :-) x

  • Hmmmmmmm

    well the low back pain and effects in your feet could well be Spondylolythesis which only a special xray/ct scan will show

    Are you able to squat down or is that always nigh impossible

    Your thyroid results are in range but the t3 is at bottom end of the range

    and free t4 is middling

    what everyone does not know and is failing to think about is what were your levels when you actually felt well ............in real medicine everyone should be tested in late teenage years to set a guideline for the future but NHS is a sticking plaster job and when it comes to thyroid is very very poor

  • Thank you!

    Yes, I can squat down but doing it, and even more when getting up, makes my knees (which I also have pain in) go "crack, creak, pop"! I also don't feel like I have much muscular strength and balance - a physio said I'm hypermobile, but the rheumatologist doesn't - my fingers are certainly very stiff. So it isn't easy to diagnose.

    Testing in late teenage years is a brilliant idea - it would set each person's baseline. Thanks again!

  • jemma, elevated TPO antibodies is a positive for Hashimoto's and yes, immunosuppressants can also suppress Hashimoto's. Your 2015 TSH is euthyroid although your FT4 and FT3 are low in range. It is very unlikely you will get thyroid treatment on the NHS until TSH is over range and/or FT4 or FT3 are below range.

    You could ask your GP or Rheumy to test iodine to check for iodine deficiency and ask for ferritin, vitamin D, B12 and folate to be checked as low levels cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

  • Thank you, Clutter. I have had low ferritin and vitamin D in the past, but they were OK earlier this year. I'll ask about the iodine - and also ask the GP about the possibility of Hydroxychloroquine suppressing Hashimoto's - will be good to discuss it with him.

    Thanks again :-)

  • Jemma, what do you mean by 'OK'? Do you just mean 'in range'? Or do you mean 'optimal'? Not the same thing. Ferritin and vit D should be at least mid-range.

    If you haven't had your vit B12 tested, I would urge you to. The problems with your feet sound like B12 deficiency. You could also have low magnesium.

    The Hashi's would explain the variation in your results, but your FT3 is way too low for you to feel well. It should be at least mid-range. Unfortunately, doctors Don't know that!

  • Thank you, Greygoose. By 'OK' I mean that I was told the results were 'satisfactory'. I ought to ask for the full results each time - I did get a print-out from the GP receptionist once, but you feel such a nuisance when they are so busy. When are we going to get on-line access to our records?!

    My rheumatologist has tested my B12 and magnesium, and they have been 'satisfactory'. I'll try and talk to the GP tomorrow and see what he thinks about trying a low dose of T4 (I'm pretty sure the Practice wouldn't consider T3, as I was told it isn't their policy even to test for T3) - many sites talk about peripheral neuropathy and hypothyroidism being linked e.g. mayoclinic.org/diseases-con... . Also concerned because my TSH has steadily declined, even though the last T4 result was only 13 - I've read that the hypothalamus/pituitary axis can become degraded over time, although the Insulin Tolerance Test showed no 'No firm evidence of pituitary disease'. I did wonder - is 'firm' code for 'possible'?

    Thanks again :-)

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