My wee girl ❤

Hi all my daughter just had the synacthen test they've said it was normal although she was admitted to hospital @9am and didn't start test till after 10am so my gp says might not be accurate,anyways not got the numbers yet hopefully tomorrow along with thyroid bloods which were done at same time,I would like to know if anyone knows of a decent private endo that will treat her based on the antibodies,I noticed in last letter from endo she has diagnosed hashimotos but still won't treat her,my daughter (who's just turned 13)has now been referred to a cardiologist as her heart rate is sitting consistently at over 100 and a gastroenterologist as she's struggling to eat,I think maybe poorly managed hashimotos is to blame for a lot of her symptoms she's still unable to go to school so if anyone can point me in the right direction r.e. Private Endo would be much appreciated I'm in Glasgow but can travel out with and I would like a true second opinion so preferably a doc not connected to the endo I see at present which may be difficult X

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  • A Mother's instinct is always best I think and wished I'd followed mine when daughter was young.

    Antibodies should be treated with levothyroxine and if you email louise.warvill@thyroiduk.org.uk and request a copy of Dr Toft's Pulse Online article (doctors' magazine) and in it you will see that antibodies should be noted and levothyroxine given .

    As you will be more and more aware many Endocrinologists know little about hypothyroidism, clinical symptoms, or dose of thyroid hormone replacements.

    Excerpt:

    But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

    In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

    Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.

    If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH concentration."

    I definitely don't agree with him that the TSH has to reach 10 when people have clear clinical symptoms which used to be the criteria, once upon a time, when people were given trial doses of NDT. (levothyroxine wasn't invented then neither were blood tests and doctors knew much more and were 'hands on' so to speak. :)

  • I sent for that info about antibodies before our appt in December and quoted it to endo so she said I had 'talked her into it 'and gave us levo 25mg then foned next day and said don't give her meds as her bloods had gone from 4.2 to 2.3 Which had nothing to do with it as she'd given me the meds based on my girls antibodies I think I'll print off that paper and highlight that part and take it with me,determined to find a private endo this week thank you for your reply x

  • I don't know if you have been given details that if you email louise.warvill@thyroiduk.org.uk who has a list of Endos which might be helpful.

    Also going gluten-free can help reduce antibodies which attack the thyroid gland till we are hypothyroid but this can take a long time and must be distressing for youngsters when there is a flood of antibodies and you must feel hyper (I am hypo so am not 100% sure).

  • No i haven't been given that info I'll email and ask for that list,was told she's flipping between over and underactive also I think there's a connection to hpv vaccine she got this time last year as that's when this started hospital are aware of this and my gp now agrees with me on that but regardless of cause she needs treatment thank you for your help x

  • Hi I have tried sending an email to that address and it keeps coming back unable to deliver? Has it maybe changed?x

  • Mb2003, Louise got married a while ago and so her email has changed to louise.roberts@thyroiduk.org.uk :)

  • Thank you x

  • Hello Mb... I live near Glasgow ...

    I have Graves' disease ...that Hyperthyroidism .... with Antibodies ..

    I was treated privately by Endocrinoligist .... and the result is that I am now

    Euthyroid ! .... ie ... normal

    Don't know that I can give names online openly .....but believe it's okay if you private message me .., ( if you'd like to that is )

    I'd be happy to help your Wee Girl ..

    Luv Mx🌹

  • Hi Madge I sent you a private message thank you ❤xxx

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