central hypothyroidism in familys

I am pretty sure I have central and I think my child does also. My t4 always lowish and tsh 2 ish. Tons of symptoms in both of us. I am due to see neurologist about some of my symptoms, such as balance and memory loss and migraines and am pretty sure that I will have MRI. Will that show anything up re central. Is there any know central hypo problems that are heriditory and does anyone know of good endo, that my childs pediatrician will be happy with who can take a look at us both. Childs blood results same as mine with loads of symptoms.

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18 Replies

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  • It definitely runs in families as all 5 hypothyroids in my family prove

    The only proof is a pituarity challenge test which they are reluctant to do

    If your TSH and free t4 and freet3 are all low then what are they waiting for before they treat you

    Mind you all my lot are only well on NDT so you might need to go down that route too

  • What is a pituarity challenge test?

    Sorry for interrupting your convo-I'm exploring HPA axis problems within my own health problems.

    Many thanks

  • cant remember the medical termbut essentuially they inject you with some drug that should make the pituarity push out TSH if he cant respinde corrdctly or at all you have central hypothyroid not sure how they detect Tertiary hypothyroid though

    i do know the drug is hard to get so they are not keen to do the tests

    but low TSH and low freet4 and freet3 should be enough for any competant

    endo

  • Its called thyrotropin release hormone ( TRH) which is the standard injection to see if your pituitary responds correctly or not. If no response then the pituitary is failing.. It used to be the standard test for hyperthyroidism and hypopituitarism also before sensitive TSH came in. Tertiary hypothyroidism - TRH should stimulate your pituitary because y our hypothalamus wasn't making TRH.

  • thanks I have written this down and will be asking for this test should my childs bloods still show low t4 and tsh and he isstill symptomatic

  • Whether the fault lies with the pituitary or hypothalamus the treatment is exactly the same.

    I have central hypothyroidism as did my father and probably grandmother.

    I have had my other pituitary hormones tested to see if they are low too.

    I was not offered the TRH test. It is unnecessary and as I said, not without its risks.

    Think carefully before asking for it. Some of these tests are not to be taken lightly. As I said the treatment is the same for both hence the umbrella term of central as opposed to secondary or tertiary.

  • If the TRH test is risky, what else do you suggest?

    Thank you.

  • The TRH test examines the function of the hypothalamus.

    The hypothalamus in turn messages the pituitary.

    If the hypothalamus is not functioning properly it will effect the pituitary hormones.

    Therefore checking the pituitary hormones are the usual tests.

    Growth hormones

    Sex hormones

    TSH ( thyroid)

    ACTH ( adrenal )

    Prolactin

    Short synacthen test. ( cortisol)

    Hope this is helpful. X

  • Also, how was yours diagnosed?

    Thanks for you replies:)

  • Mine was diagnosed by checking the pituitary hormones.

    I may be either tertiary or secondary. It doesn't matter is treated with the same hormones.

  • Both my FT4 and FT3 were well below range

    FT4 7 (12-22)

    FT3. 2.1 (3.1-6.8)

    My TSH didn't rise much above 6.

    My symptoms were very very extreme.

    i take T4, T3, estrogen and hydrocortisone.

  • You might find this link to a UK pathology lab, re TRH test, of interest:

    pathology.leedsth.nhs.uk/dn...

  • Also this test is not without its risks which I think is why it isn't performed very often.

    X

  • Thanks really fed up. How did you get diagnosed or more to the point who diagnosed? I am happy to treat myself but with hostile husband I dare not touch children with ndt unless properly prescribed. I saw an endo six months ago who said low t4 was normal for me, did other blood test I think one fsh and one lth or someting and she said if one came back to high and other low she would investigate furthur, they came back one to high the other 2 low and said that it was just bloody polysistic overies and would take it no furthur. Not too bothered as just treat myself and doing ok but not prepared to just sit back and watch my child suffer as I have all these years. Is there any confirm heriditory stuff you have found that I can maybe use to persaude childs doctor to do more tests. I think personal experiance is more important that reasurch docs bt drs like them and disregard personal experiance. I have been trolloing in web and have found nothing yet.

  • problem is your on dodgy ground treating your child

    sadly i dont know the answer to help you ...i know PCOS can affect matters but that cant be the reason your child is ill

  • You should look at this post from helvella

    healthunlocked.com/thyroidu...

    Scroll to humanbean's link to get the full paper and get a copy to show your GP

    I found my endo at Guys in London was very good he had an Irish name I think he was the head one there. He was very compassionate and calm when I was really very ill I found him approachable. His approach was conventional but he did get me a lot better and I was desperately ill.

    Here he is:

    Jake Powrie

    guysandstthomas.nhs.uk/our-...

    I think Louise (admin) has a list of endos that are recommended and she will send that to you.

  • Thanks tsh, that really helpful and I generally find kind people trustworthy. I have also contacted pituaritary foundation and had helpful reply saying to ask to be referred to pituitary center of excellence.

  • I know how difficult papers can be to read, but this is an overview of central hypothyroidism from just five years ago.

    academic.oup.com/jcem/artic...

    Might be worth reading through?

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