Help reading required tests to obtain diagnosis - French endocrinologist

Help reading required tests to obtain diagnosis - French endocrinologist

Hi

I posted on here a few days ago to say that I have a whole list of hypothyroid problems, low TSH and fT3 and fT4 and a family history of hypothyroidism. However as my results are officially JUST in the normal ranges, the endo has said it's not a thyroid problem. He dismissed secondary hypothyroidism as other hormone levels are 'normal' ... he then wrote to my doctor that I have CFS.

I was very upset about this diagnosis, as I'd like the chronic fatigue to be viewed as one symptom of all of my problems, rather than a definitive diagnosis. I want to investigate other causes first.

Anyway, my family asked me to send my blood tests to our french endocrinologist there. A family member showed him my results. He said he believes I DO have thyroid hormone related problem and wants me to obtain more tests.

He has scribbled down which blood tests he'd like me to get but we can't read it. I wondered if anyone could help read it?

Thanks in advance

16 Replies

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  • The top one looks like TPO, thyroid peroxidase Antibodies. And TRH? Then TSH but I don't understand the meaning of +30 and +60.

    Have you had TPO and TgAb tested?

  • Hi! Yes both were fine - thats thyroid perioxidase and anti thyroid globulin right? They were both negative

  • OK. TRH or thyrotropin releasing hormone is a pituitary hormone. Do you think he wants you to get that tested?

  • I wonder if that would help know if it's secondary / central hypothyroidism?

  • I don't know enough about central hypothyroidism. Maybe someone else on here would know?

    Maybe post another question specifically about it?

  • Lulu2017,

    If your results showed low-normal TSH with low or low-normal FT4 and FT3 that could indicate central hypothyroidism and TRH is a test to check pituitary/TSH function. I've not heard of anyone having TRH checked outside of endocrinology.

    Negative TPO doesn't rule out Hashimoto's. Some people have neg TPO but are positive for thyroglobulin antibodies.

  • One might be TSH - thyroid stimulating hormone test? Think he may be thinking is pituitary problem? X

  • Low TSH along with low freet4 and freet3 will be secondary hypothyroid

    They try to claim its rare but its not as sll my lot have it and were diagnosed with a TSH of 2.9

    Very low t4 and lowt3

    They all had very high antibody levels because thry fo have Hashimotos

    All are only well on NDT not levo or T3

  • Thanks for this advice. My TSH was 1.6ish I think and then low fT4 (12.4) and low fT4 (3.4)

    If my antibodies are ok and therefore not hashimotos, can it still be secondary hypothyroidism?

    Yes, when i asked the endo said I was so rare and basically implied it wasn't worth testing for!

  • Its not as rare as they claim and i know theres big problems in the UK getting the stuff to inject to carry out the pituarity stimulation test ...have you ever sustained a blow to the head or had massive blood loss

    Have other members of the family got hypothyroid or other auto immune illness

    Your levels are low and you should be treated but in the UK thats becoming a massive battle...you might end up having to self treat

  • Hi! No no head injury or anything. I've had lots of my symptoms for years. Have had some tough infections including an awful kidney infection - since then my body never quite felt as healthy.

    Yes hypothyroidism is on both sides of the family.

    So so hard when you're at that low end of 'normal' and 0.something different and you'd be treated!

  • If one more try at your gps gets you nowhere

    You need to consider self treating with NDT

    My lot all do it because despite being diagnosed they cant tolerate levothyroxine or T3

    Its not that expensive

  • Thanks a lot. I guess I'm just anxious about reacting to something if it hasn't officially been prescribed? But have your all been ok?

    Would you mind messaging me about where you get it from?

    Thank you xxx

  • Will do

    Theres lots on this forum and lots on tpauk.com who have no option but to self treat with NDT

    My grandaughter sees top professor in the UK and he keeps trying to get her GPs to prescribe it because he knows all 5 in our family cant exist on the synthetic levo or T3

    My husband would have commited suicide years ago if he had not switched

  • If you read the description of how the TRH Stimulation test is performed it makes sense of the referall to TRH, TSH, +30, and +60. See this link :

    en.wikipedia.org/wiki/TRH_s...

    Sadly, I have no idea where you would get that done in the UK.

  • Also look at Page 18 of this document - the Endocrinology Bible of the Imperial Centre for Endocrinology :

    imperialendo.co.uk/Bible201...

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