Hi there, I'm newly diagnosed (by UK GP) with Graves disease, and am waiting to see an endocrinologist who is supposed to prescribe me carbimazole. I have a question about my symptoms, which are mild but seem more consistent with hypO than hypERthyroidism:
My blood test results were:
-Free T3: 13.8 pmol/L (3.5-6.5)
-Free T4: 28.9 pmol/L (10.5-21)
-TSH: <0.03 miu/L (0.35-5.5)
-Thyroid peroxidase antibody: 570 kU/L (0-60)
-normal levels of vitamin B12, low levels of ferritin (I've been told to take an iron supplement or a multivitamin without iodine)
So based on some googling it looks as though it is Graves, but my symptoms are kind of weird. I went to the GP because I get tingling in my fingers and toes on and off, and had occasionally high resting pulse (but I've always been quite an anxious person). I don't have extra energy and if anything my appetite has declined a bit over the last month or so, which I thought was just the hot weather. I feel as though I have less concentration and am easily distracted. I've lost a few kg over a few months but had at the same time increased my exercise levels deliberately (and am eating less than in winter/spring) so this isn't unexpected weight loss.
Please could anyone share experiences of unusual (more like hypOthyroid) symptoms with a diagnosis of Graves? Does anyone know of there's a chance this could be Hashimoto's instead? I'm going to ask the endocrinologist, but just wanted to be more prepared. Thank you! (Sorry for the very long post!)
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Cooper75
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Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:
TRab
TSH receptor antibodies
TSI
Thyroid-Stimulating Immunoglobulin
TPO & TG antibodies may be Graves or Hashimotos.
TPOab
Thyroid Peroxidase antibodies
TGab
Thyroglobulin antibodies
I was initially diagnosed as Graves, but later antibody tests highlighted Hashimotos, so correct antibody testing is key. Hypo and hyper symptoms often overlap.
Do share key vitamin tests and ranges with us for ferritin, folate, B12 and vit D. Having these optimal supports thyroid health.
No, it doesn't look like Graves' at all. It looks like Hashi's - Autoimmune Thyroiditis - aka Hashimoto's Thyroiditis. If it were Graves' the FT4/3 would probably be a lot higher than that. And, TPO antibodies are more associated with Hashi's than Graves' - although you can have some TPO antibodies with Graves', when they're that high it's more likely to be Hashi's, plus the levels of the FT4/3 which suggest a Hashi's 'hyper' swing, which isn't the same as full-blown hyperthyroidism as in Graves', because it is only temporary. Unfortunately, doctors don't know the difference.
However, carbimazole is not the right treatment because it will make you go very hypo very quickly. So, make sure you get fresh labs before seeing the endo because the numbers will probably be very different.
-normal levels of vitamin B12, low levels of ferritin (I've been told to take an iron supplement or a multivitamin without iodine)
Normal just means 'somewhere within the range', but the ranges are so vast that it's more important to know where within the range they lie. B12, for example, can go from around 150 to 900 - which is, of course, rediculous. If your result was 151, your doctor would say it was 'normal', but it isn't. B12 should be at least over 550. And your symptoms of tingling would correspond to low B12. So, do you have the exact numbers for B12?
This is really helpful! My GP is away at the moment but when I hear back I'll ask about a blood test for TRab or TSI, and hopefully will be allowed this to confirm before they put me on any medication...
Thank you, so I should ask the endocrinologist to test this - apart from what I've told you here, in your experience is there anything specific I can say that's more likely to persuade them to do this test? I'm hoping they will agree to, but who knows
Well, it depends. If you have another blood test testing TSH/FT4/FT3 just before the endo appointment, as you should do, and the results come back is higher TSH, and lower FT4/3, then you really don't need those other antibodies tested because the TPO antibodies will be telling him that you do, in fact, have Hashi's. You only need TRAB/TSI done if he starts insisting on prescribing carbimazole. In which case, you do as Buddy195 suggests: namely, refuse to take it until the correct antibodies are tested.
I personally would refuse the medication without the correct tests. I was misdiagnosed for a long time and it’s thanks to forum members like greygoose and SlowDragon that I discovered I have Hashimotos and found a path to recovering my health.
Thank you! What was the process to diagnose you eventually with Hashimoto's instead of Graves, if you don't mind me asking? Did you also have low TSH, high FT3, FT4 and TPO to begin with?
My TSH, FT3 and FT4 kept alternating low/ high. Also diagnosed with Thyroid Eye Disease (TED) which is more often linked to Graves. Specialist Endo originally diagnosed Graves largely on symptoms (weight loss, palpitations, tremor, plus TED) but it was much later down line that correct antibodies tested!
I lost masses of weight - so much that the receptionist (I’d known her since the school gate) commented on how much I’d lost when she brought my doctor’s coffee in to her. My heart pounded like mad - I could feel it if I put my hand on my stomach. Sleep was awful, hot and sweaty, no energy, really grumpy and bad tempered and Tired with a capital T. I was permanently exhausted no matter how much sleep I got but then it was so disturbed anyway. I felt terribly ill.
I started carbimazole straight away and had my first endo visit three months later by which time I was hypO. (I saw the doctor on a Wednesday, bloods next day and I was taking carb and had a consultant’s appointment - three months ahead - by the Friday )
Every time I needed an increase in levo as part of my block and replace treatment I used to feel hYper again but someone on here said I was probably needing an increase in levo and that proved to be correct.
With Graves Disease you can have either blocking or stimulating antibodies and these two extremes interchange fighting for control of your thyroid and causing you a myriad of symptoms that can leave you totally exhausted and confused.
First thing is to actually get the antibody blood test arranged so we know if you are dealing with either Graves or Hashimoto's as both these auto immune diseases start off the same way but not treated the same way.
Antibodies are generally expressed as TPO : TgAB with TRab or TSI being the medical evidence and proof of Graves if over range and positive -
generally written as a Thyroid Receptor Blocking or a Thyroid Stimulating Immunoglobulin antibody.
Some people do have Graves and Hashimoto's running at the same time and Graves treatment takes precedence as Graves is considered life threatening if not medicated.
Both these diseases are auto immune and something has triggered your own immune system to turn and attack your body rather than defend it.
There is likely a genetic predisposition maybe a generation away from you with someone with a thyroid health issue - but quite why this has happened now is the 64 million $ question .
You are the best placed person to know if anything out of the ordinary has happened and why your immune system might have been triggered to go on the attack.
It is wrong for anyone to assume you have Graves disease.
It has already been pointed out that it needs a blood test to prove.
And that another possibility is a phase of Hashimoto's.
But it is also possible that you have an autonomously functioning nodule. That is, some thyroid tissue has grown and is producing thyroid hormone regardless the TSH level. If it were that, the good news is that treatment might be simpler and have few (if any) long term effects. An operation to remove the nodule or some sort of ablation (there are a few possibilities).
The initial treatment would likely be an anti-thyroid medicine such as carbimazole even if it is a nodule.
Hi there, I managed to find I'm my NHS record that the blood test did include a test for TSI, and the result was above range: 2.80 iu/L (<0.56)
So I assume that confirms Graves disease? Does anyone know if this is a mild/moderate/severe result for Graves?
I'm very worried about developing eye problems and I've read that TSI levels can be used to predict eye problems in Graves, does anyone know anything about this? Thanks!
Yes, you are right and that looks like a positive for Graves disease.
You may or may not develop eye issues - there is no point worrying over something that may not happen.
As previously detailed you can read around Graves on the Elaine Moore website.
Your T3 and T4 levels are not too high and hopefully the AT drug will semi-block just sufficient new thyroid hormone production to keep your T3 and T4 mid range and presume you are having regular blood tests and follow up appointments as you progress through this first phase of the disease.
As your immune system calms down your AT drug will likely be titrated down so your T3 and T4 do not fall too far through the ranges with you then suffering the equally disabling symptoms of hypothyroidism.
Some endos suggest Block and Replace treatment if it is hard to stabilise your T3 and T4.
In this way the AT drug is prescribed at a much higher dose to totally block your own thyroid hormone production and a prescription is given for T4 - Levothyroxine the main hormone the thyroid produces daily - so you receive a measured dose, and your T3 and T4 are held stable.
We now have research papers saying that the longer the patient stays on the AT medication the better the long term outcome for the patient : please keep for a future reference :
We now also have research on RAI thyroid ablation for Graves Disease so please read and keep this information or any future conversation you may find you have to have :
Any new information deserves a new post so all forum members can see, follow and offer advice on your progress - should you wish.
I know this is still ' new ' for you but in this very busy forum and even day old posts are considered -- answered as fully as possible - and not looked back on, unless of course you reply to a certain person and ensure their name comes up when you reply to them.
Hope that makes sense - there's a lot to take in at the beginning.
You can read any forum members Profile and thyroid journey by pressing on the icon alongside their name - and you can find all you have ever written by pressing on the More icon top right on this screen which will take you to your Profile page.
When is your appointment as you haven't started the AT drug yet - have you ?
I was initially prescribed the AT drug by my doctor who was liaising with the endo at the hospital and at my very first hospital appointment told I was to have RAI the following year as Carbimazole was too dangerous to stay on long term.
I was very well on the Carbimazole and thought my problem were resolved !!!
I don't have an appointment set up yet... I was diagnosed by GP last week and told she had contacted the endocrinologist and GP would get back to me in a few weeks, but that she wanted to start me on carbimazole and needed the endo to sign off on it. So I hope I'll also get to talk to the endo, but not too sure... I'll ask the GP when I hear back hopefully next week. As you can see, I have a lot of questions for her 😅
I think it probably is in her inbox, but she told me she's away this week unfortunately! I'm feeling oddly fine apart from anxiety and headaches which I suspect are stress-related. Thank you for asking and for all your great advice!
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