My daughter saw both her rheumatologist and gastroenterologist last week and has had bloods done.
The gastroenterologist told her that she is hyperthyroid and that the rheumatologist would prescribe the correct medication for her.
The letter has just come through from the rheumatologist as well but she has said my daughter is hypothyroid and is prescribing levothyroxine through the GP.
Her bloods were:
TSH <0.005
Free T4 30.3
Free T3 16.4
Can someone please tell me which doctor is right as I don't want my daughter taking the wrong medication!
Thank you x
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SjogiBear
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Thank you for replying so quickly. There were no reference ranges given as these were just the bald figures given in both consultants' letters. My daughter already has coeliac and antibodies for dermatomyositis which is why she was already seeing both consultants. She does have low B12 as well. She has to ring the GP tomorrow to try and get an appointment to discuss when I raised a concern so I'm guessing she is better asking for an endocrinology appointment rather than just getting something prescribed by the GP?
You haven't said if she has symptoms of hyperthyroidism?
She needs to see an Endocrinologist who will be able to run the antibody tests and start any treatment. In the mean time if she has symptoms her GP might be able to prescribe something like propranalol to help with palpitations.
Does she have injections with B12?
B12 needs other things to work like all the vitamins I have mentioned in good amounts.
It is an unexpected diagnosis as she tends to be overweight rather than underweight. She has always overheated and sweats a lot. Her hair is painfully thin. She tends to get dizziness and palpitations when she gets up in the morning (we thought she possibly had POTS but rheumatologist thinks not). She gets very fatigued but that of course may be due to her other underlying autoimmune conditions. She has just turned 19.
Weight is not a good indicator - against most expectations.
Hypothyroid people sometimes lose weight - and concerningly, that can be due to loss of muscle mass. And poor digestion and impaired absorption.
Hyperthyroid people sometimes put on weight - sometimes suggested to be due to having a greater appetite. (Though I would be wary of making any assumption of the cause.)
Yes she has been low in iron, B12 and Vitamin D for a while and has been prescribed supplements (not B12 injections). Previously just attributed to her coeliac disease.
Thank you - yes from what I could check online, it was telling me HYPERthyroid rather than HYPOthyroid. This is dreadful isn't it as if I hadn't queried it, she would just be taking the wrong meds!!!!
Frankly it's appalling .... and dangerous , because her fT3 is very high , and there is absolutely no way she should be prescribed levo. Someone needs a proper telling off . It's a good job you were on the ball enough to check it out. SjogiBear
Fairly long in the tooth having to deal with my own autoimmune conditions ... always told I would have thyroid problems myself but they've never been out of range.
Hyperthyroidism needs referral to endocrinologist... it is not treated by GP's (although they may prescribe something to help reduce symptoms while waiting for further imput from endocrinology,,, eg propanalol is often used to help with heart symptoms )
even without seeing the lab ranges , those T4 and fT3 result are both definitely over range ..... the fT3 is substantially over range .
If any doctor says she is hypothyroid and needs levothyroxine, the doctor should be struck off as a danger to patients.
The most likely treatment would to to start Carbimazole in order to firstly stop the thyroid hormone levels rising further, then to see them reduce to more acceptable levels.
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I've already been talking to our council safeguarding team about a medication incident regarding my mother which is being escalated to a full inquiry. It's clearly one of those weeks!
I've just read your first post on the forum about your daughters stomach/gut issues from 8 years ago - so was anything diagnosed back then - I see she is now diagnosed coeliac and with a skin condition - any other medications being taken?
Has she ever had a thyroid panel run to include a TSH, Free T3 and Free T4 so we can put these new results into some context ?
Are you aware of your daughter dealing with any new symptoms ?
How do you find her - anxious edgey, and with a short temper, not sleeping, eating more but losing weight, are her eyes affected - dry, gritty, streaming, and/or light sensitive ?
If there is no sign of a swelling in the neck and no difficulty swallowing, breathing or eating, we are likely looking at a thyroid Auto Immune disease of which there are two that can cause a suppressed low TSH and over range T3 and T4 levels -
and the only way to know which is causing the thyroid to malfunction is by running the thyroid antibodies - TPO - TgAB - TSI - Trab - or written as the TSH Thyroid Receptor reading with a range or cut off number.
Whichever NHS laboratory ran this blood test would have continued to analyse and run the antibodies to justify the results and already have the facts of which antibodies were found in the initial blood tests and the proof of a diagnosis.
If Graves Disease - Thyroid Stimulating or TRab - Thyroid Blocking antibodies - this auto immune disease is treated with an Anti Thyroid drug to semi-block own new daily thyroid hormone production and slowly the T3 and T4 will fall back down into range while we wait for the immune system to calm back down again and hopefully the thyroid reset itself without the need for any drugs.
If with Hashimoto's antibodies - TPO and or TgABs - this is not medicated as the T3 and T4 fall back down into range themselves and ultimately after various immune system attacks the thyroid becomes too damaged to work effectively and the patient becomes hypothyroid and is started on T4 - Levothyroxine - thyroid hormone replacement.
Both AI diseases tend to occur at times of increased hormone production, puberty, pregnancy and menopause - and common triggers tend to be stres and anxiety :
You might like to dip into the research of Dr Izabella Wentz who has Hashimoto's and writes as thyroidpharmacist.com
As for Graves the most well rounded of all I researched for myself is that of Elaine Moore's books and website - elaine-moore.com
Wow thank you for such a comprehensive reply. I will take a good look at the links you've posted tomorrow. She was diagnosed coeliac 9 years ago based on blood results alone - she has just seen the adult gastroenterologist for the first time and he has referred her for a colonoscopy and a gastroscopy as well as a couple of other tests. She has only been taking vitamin D/calcium and B12 tablets. She has also tested positive for antibodies for dermatomyositis but is asymptomatic.
She has been under massive stress this year as she got an offer for a place at Cambridge University but missed out because all the art A level work at her college was downgraded and so her result moved from A to B. This lost her the place and so she is now at a university that is not well regarded purely because it offers the subject she wants to specialise in. She has been incredibly emotional about this as you can imagine.
She has also got a serious boyfriend for the first time and tried taking contraceptives but had to stop as they made her feel dreadfully emotional and she couldn't stop bleeding. Her fatigue has been noticeably worse in recent months and her hair has got dreadfully thin. Apart from that, no other symptoms are particularly new.
She has been diagnosed coeliac for 9 years and has been exclusively gluten free all that time - I'm coeliac alongside Sjögrens so we are very careful about cross contamination. She takes vitamin D/calcium and B12 tablets and sometimes ferrous sulphate .... all prescribed. It looks like the new gastroenterologist is doing a lot more investigations - the rheumatologist ended her letter with 'see you back in clinic in a year's time'!I am going to see if she can push for a referral to see an endocrinologist now.
Be very wary of supplements prescribed by a doctor, because they know nothing about nutrients:
- how much vit D?
- why calcium? Not a good thing to take, especially if you don't need it. And most people don't. Have her calcium levels been tested?
- did he also prescribe - or even mention - vit D's cofactors? Magnesium - because the two work together and vit D won't do much for you if you don't have enough magnesium in the system (and most people don't) - and vit K2-MK7, because taking vit d increases absorption of calcium from food, and K2 makes sure it's absorbed into the bones and teeth rather than building up in the arteries and soft tissues
- which form of B12 did he prescribe: methylcobalamin or cyanocobalamin? Sublingual? How much? Did he not test folate first? Taking B12 could mask a folate deficiency and the two work together - in fact, all the Bs work together and should be kept balanced. So, a B complex should be taken with B12 supplementation.
- did he tell her to take vit C with iron supplements to aid with absorption and avoid constipation.
Absolutely vital that antibodies are tested before going any further. Her FT4/3 levels are high but not catastrophically so, and leave a margin of doubt about whether she really has hyperthyroidism or the hyper phase of Hashi's. She needs:
- TPO and Tg antibodies for Hashi's
- TRAB and TSI for Graves'.
Just testing TRAV for Graves is not sufficient because that can be raise in both Hashi's and Graves'.
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