Another question : Ao sorry ..me again lol just a... - Thyroid UK

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Another question

10 Replies

Ao sorry ..me again lol just a quick question and promise will never start another post again lol !

I cant find anything about it on google ..

But if you have had positive antibodies come up ..does this mean you have "always" had these antibodies ?

Or is it something that is aquired ?

I am asking because my mother had thyroid problems it has now transpired that i do in my 40s

But my daughter also like me, has had fibro and chronic fatigue diagnosises and has a lot of the same symptoms .

I am considering paying to have her tested too .

So am wondering about this .

Many thanks.

10 Replies
greygoose profile image
greygoose

I'm not sure there is a definitive answer to that question because there's been so little research into it. It would involve so much blood testing to find out when antibodies actually develop, like testing the same person every week of their lives. And you'd have to take fluctuation into account, and all sorts of other variables. And, then you have no idea that that person is actually going to develop them, so it might have been all for nothing.

I would really like to know when I developed mine. It's believed that I've been hypo since I was about 8, but as I was never tested until I was 55, I have no idea when the antibodies arrived. Have they always been there? Or did the appear after the birth of my first baby - which often happens - or at some other time, like when some idiot GP prescribed iodine and I was ignorant enough to take it? I just don't know.

Think it's worth testing your daughter anyway, though. As long as you realise a negative result is not definitive. :)

in reply to greygoose

Oh no!im guessing that caused even more problems for you then ?You must have been feeling awful for years.

Yes i hear what you are saying .I have also suspected for years i have some issue with my thyroid .

My daughter and me have almost identical symptoms particularly in the throat area ..we both have a lump feeling she particularly suffers with that (doc of course says its "anxiety" ) and i have had a strangled / swollen sensation for many many years .she also has a very horse voice amongst many many other things.

She had a baby 18 months ago and i have just found something that says they do sometimes test for antibodies in pregnancy ?

She has definitely deteriorated since the baby but she had kidney failure and sepsis so we kind of put everything down to that and the " fibro"

I think i will just take your advice and get her tested ,she is only 28 and i dont want her going through years of hell and gaslighting like i have if theres any possability of her having this .

No way .

However as you say not necessarily definitive anyway but still maybe worth having some kind of picture :-)

greygoose profile image
greygoose in reply to

I did feel awful, on and off, through the years. But, I didn't know what a thyroid was, so couldn't put it down to that. It was suggested many times, both by doctors and my ex, that what I really needed was a psychiatrist!

I don't know about testing during pregnancy. In my day - my youngest is now 46 - they didn't appear to test for anything much. Wish my second pregnancy, I didn't have a single blood test for the whole nine months! So, I rather doubt they tested for antibodies in those days, don't know about now.

But, yes, I do think it's worth it to get her tested. At least you will have a base-line, then, if nothing else.

in reply to greygoose

Thanks greygoose only just realised your post was here !

Omg 🙄Yes that what they do ..I have complex trauma or Cptsd since childhood but only recently diagnosed 3 years ago .I have also felt ill for years and years peaking about 5 years ago .Lots of "unexplained" symptoms.I have at times been treated appallingly by gps quite frankly .I am sure there are many many similar experiences from people on here so i by no means think im anyone special .

Like you my exhaustion and other physical problems blamed on mental health.It is correct that trauma in childhood significantly raises your risk for physical & somatic illness but that doesnt mean there isnt any physical illness if im making sense.I have had doctors blaming me for my weight blaming me for being ill telling me its all down to my lifestyle ..etc etc..before i had spinal stenosis which has now caused mobility issues i was always quite fit walked everywhere and always been concious of nutrition ..i have tried everything i possibly can to feel better but nothing has ever really changed that underlying feeling of unwell - ness ..It is a double edged sword now that i have had these results, as on the one hand its confirmed everything i have known in my gut for years which is a relief ..on the other i feel even more resentful that i have been silenced and dismissed and my health has been left to deteriorate .anyway digressing again !sorry 😂

Yes i read earlier they test for antibodies in pregnancy sometimes as it can harm the baby ?But i dont know if my daughter was.

And i do agree with you too.Am going to get her a test.I really wouldnt wish on anyone the anxiety of being constantly told theres nothing wrong when you know there is .

Thankyou again for your reply and sorry ive gone on so much !

greygoose profile image
greygoose in reply to

No need to apologise. :) I'm just sorry to hear another sad tale of doctor incompetence, not listening to the patient, ignorance and blaming the patient for their poor health - always so much easier than actually doing their job! I try not to think too much about it, because it makes me so cross. I think it's their complacence more than their ignorance that upsets me most.

in reply to greygoose

Yes i hear you completely ..you have clearly been through it all yourself and some .I have had some lovely doctors but even they just havn't "got it" They have an agenda at the end of the day.. an interest in medicine and many of them have gone into the "buisness" through family tradition they read a few books,specialise in one or two limited areas and thats who we are supposed to have trust in .Over the years i have found myself becoming more and more passive with them because i just feel its pointless mentioning anything anymore.They dont listen to us especially as women ,which just makes us feel more frustrated and angry (obviously crazy and hysterical ) ..Not what what we need at all when we are already really struggling and suffering is it .

Anyway i will stop moaning now lol 🙃

Thankyou so much greygoose :-)

SlowDragon profile image
SlowDragonAdministrator

Recommend getting full thyroid and vitamin testing for her

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

if on levothyroxine......Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

antibodies seem to develop over time....and fluctuate

in reply to SlowDragon

Thankyou very much slowdragon.

She is iron and vitamin D insufficient and has been for years ,my son is also D deficient and always complains of being exhausted and hurting .(not really good for a 20 year old male) Not sure about B vits for my daughter.

She has had a whole host of symptoms all which seemed to start in her feet and legs in her late teens .

I will be getting her a test.

I feel though that because she young nothing will show yet but i have no doubt whatsoever that something will years down the line .

Thankyou so so much for your feedback.

SlowDragon profile image
SlowDragonAdministrator in reply to

Often hashimoto's starts at puberty

Just not picked up and diagnosed till years later

Probably look at getting your son tested too

in reply to SlowDragon

Hmmm yes food for thought !

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