Sister has just had positive thyroid antibody test result and she's been prescribed Carbimazole 5mg to start.
She has T4 reading of 24.3 (<22.7). So I assume she's hyperthyroid? Does she have autoimmune? Will other family members be prone to this also? Will she need to be on medication for life?
I'm bordering hypothyroid with a TSH of 3 but unable to get NHS to test due to being within range. My GP has ordered vitamin d & parathyroid tests as my calcium and phosphate levels are low. And I have all my other blood tests due for Haemochromatosis so will get full panel results soon. Another question is as there are positive thyroid antibodies would it be advisable to have private thyroid testing for myself?
New to thyroid problems but feel like there's a tendency in the family. There are also other autoimmune conditions.
Thanks for reading and sorry for all the questions.
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Cinderellen
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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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
Thank you for your very detailed response... I was on my phone yesterday and had a migraine so couldn't fully appreciate how much information that you gave. I am about to access this from my laptop... just getting myself a cuppa first. Thank you again.
Totally agree with SlowDragon. And, I do not believe carbimazole is the right treatment for her. It will make her very hypo very quickly. With that level of FT4, it's more likely to be Hashi's than Grave's, in which case the high levels are only temporary. But, she does need all those antibodies tested.
No FT3 tested? When has she been told to go back for a retest? It should be four weeks from starting the carbimazole. It's very important that she does go back.
She goes back 12th April - for retest. I believe that the Carbimazole suppresses immune system... she already has low white blood count so it is alarming to think that it could make her worse.
No FT3 tested and we don't know what antibody test was done either. Thank you to both yourself and Slow Dragon. Just trying to work out the best way forward as it looks like our family is plagued with numerous autoimmune conditions.
Carbimazole suppresses thyroid function. If she is not really hyper, it will very quickly make her hypo.
She needs to get a print-out of her results and ranges. If she lives in the UK, it is her legal right to have a copy. But, she should insist it is a printed copy, not a hand-written one, to avoid mistakes. Once you know the exact results, you'll be better able to decide the best way forward. At the moment, you're both groping in the dark - and her GP probably is, as well!
In Future, she should always ask for a print-out of any blood test she has done, and keep her own records. It's been proved so often that you just can't trust doctors. On the back of each copy, she should make notes of any medication she is taking, any symptoms she is experiencing, and how she feels. You cannot imagine how valuable that will be in ten years time!
Should she stop taking the medication prior to testing?
I know that taking supplements/medication can skew results.
She's been referred to local endocrinologist but just wondering if there are any that are good with Thyroid problems. Although, I'm finding that the more I see of specialists, I realise that they're not that special(ised). 😉
I get printouts of all tests as having Haemochromatosis and Pernicious anaemia... but they're filed away with respective area. Sis will soon learn that she needs to be in driving seat of own health. Thank you. X
I cannot advise whether to take the carbi or not. I'll just say that if it were I, I wouldn't take them. Not with a result like that, and not knowing my FT3. I would want more thorough testing before taking them.
But, how does she feel? Presumably she's not well or she wouldn't have gone to the doctor's. Do you know exactly what they're testing for on the 12th April?
But, come to think of it, a GP cannot test for Grave's. An endo has to do that, don't know why. So, if the antibodies the GP tested for are positive, it means she has Hashi's. So, no, with Hashi's, I would not take Carbimazole.
She feels great. She went to GP for routine screen as it's a new surgery, we have Haemochromatosis and Pernicious anaemia and couple of other autoimmune running in the family... so they took bloods. She had a thyroid test at last surgery and they just prescribed the Carbimazole without any further testing she didn't take them. Then she moved, and had a delay in registering at a new surgery.
I have tried to encourage her to test due to being ill myself the last year and a half... and I'm convinced that it's my thyroid playing up, and knew of her previous problem. I'm pestering everyone to look after their health and not to trust all that we're told from the doctors... mainly due to my own experiences.
I have told her to join here so she can learn more herself.
I think her tests in April are to check levels/response to the meds.
It might be an idea to get private tests - TSH, FT4, FT3. No need to do Hashi's antibodies because you know they're positive. But, if you can find TRAB or TSI - Grave's antibodies - it would be a good idea to get them done, just in case. Then, you've got all angles covered.
Her Endo may do a ft3 as mine does as gp requests them but lab refuses them-i am one of them people who has hashis but suspected graves aswell but endo will not test for graves as he says"everybody has it" umm!! i was diagnosed hyper back in july and put on 20mg carbi when really i could have been on a hashi flare but medical profession said "rubbish" i am now currently on 2.5mgs of carbi and will be titrating further down very soon when my endo rears his ugly head again😊but greygoose told me i was on a hashi flare but at the time i did not have antibodies tested when 1st diagnosed so put on carbi- greygoose is excellent at giving correct information and was right with me but for now im stuck with carbi until endo says no more-xx😊😊
Thank you for your reply... I guess there is a lot to learn and consider. I didn't know that you could have both running along side one another. I know very little of either conditions though. My head hurts already. X
Haha, yes ive learnt no end from this fab forum-you can have both hashi and graves but not at the same time. Your sister needs to learn as much as possible as medical profession will not take you seriously and they lack knowledge anyway. Good luck🌟🌟
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