I have just been diagnosed with an overactive thyroid after months of symptoms - I actually thought that I was asthmatic because the worst symptom was breathlessness and my heart rate was really high (resting was 130bpm!). After blood tests, the GP called me in urgently and has started me on propranolol and 20mg carbimazole. He has referred me to hospital endo but said not to expect an appointment before May.
My bloods were:
Serum free T4 83 (range 12-22)
T3 35.4 (range 3.1 - 6.8)
TSH <0.01 (range 0.27-4.2)
Se Thyroid peroxidase Ab conc 143 (range 0-34)
I sort of understand the first three but have no idea what the last blood result means.
I have no physical Graves symptoms and if you had asked me a year ago, I would have told you that I suspected I was hypo. Actually I had hyper symptoms about 6 years ago (weight loss, appetite, shaky hands) but that only lasted a month or so and then it was back to normal. I remember that I felt great and full of energy.
I would be so grateful for perspectives - I don't really want to take carbimazole if in a few weeks I am going to be hypo. Is there any way of telling whether I have Graves or Hashimotos or neither? The GP has told me to repeat bloods in 6 weeks. Should I stop the medication before the tests? I am also waiting for a cardiac scan and this scares me as the beta blockers have been great in lowering my heart rate but I still have palpitations that stop me from sleeping (sleep is pretty awful to be honest).
Thank you for reading
Ellie
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Portabella
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You have had TPO - Thyroid peroxidase antibodies tested which is usually indicative of Hashimoto's.
Your GP appears to have made the same mistake as many doctors do who don't fully understand autoimmune thyroid disease.
I have no physical Graves symptoms and if you had asked me a year ago, I would have told you that I suspected I was hypo. Actually I had hyper symptoms about 6 years ago (weight loss, appetite, shaky hands) but that only lasted a month or so and then it was back to normal. I remember that I felt great and full of energy.
There is you big clue, besides the positive TPO antibodies.
What were your TSH, FT4 and FT3 which gave the diagnosis of overactive thyroid?
If your TSH was low and FT4/FT3 high then this, rather than being an overactive thyroid, is very likely a Hashi's swing and you absolutely do not need Carbimazole if you have Hashi's.
Hashi's is where the immune system attacks the thyroid and gradually destroys it eventually causing full blown hypothyroidism. When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get hyper type symptoms to go along with these results. The hyper swings are temporary, and eventually things go back to normal. These fluctuations are normal with Hashi's and you can swing from hypo to hyper and back again.
I think the TSI and TRAb antibody tests can only be done with an endo, so your GP should refer you urgently.
Welcome to the forum; you will get lots of great advice & support here Portabella.
I was initially diagnosed with Graves, but as Seaside Susie explained so well, it’s possible this was just a Hashi flare, as my antibodies clearly show Hashimotos. I feel so much better now my thyroid levels and key vitamins are optimal. Like you, I had rapid heart rate, palpitations and was given propranolol. I d stay off the carbimazole until you’ve had more antibody tests. If you get no joy from your GP, use Medichecks (tests are often discounted on Thursdays). I feel empowered by doing private tests for thyroid & key vitamins and posting results on this forum for advice. Honestly, there is a wealth of experience on this forum & following the advice of knowledgeable members is the best thing I’ve done for my health. Keep posting!
Agree with others that you need a TRAb or TSI test to say if you actually have Graves'. You could have Hashi's and be in a flare or you could have Graves' or you could have both Hashi's AND Graves' (I do). If you do have Graves' you will definitely need to take Carbimazole before May so I'd really push for a test or do one privately. I was diagnosed with Hashi's and treated with thyroxine, then after a few months my symptoms changed and I was also diagnosed with Graves'. I saw a private endocrinologist in the end as the wait was too long. Best of luck - you must feel pretty rotten with those levels you poor thing.
Carbimazole is an anti thyroid drug and should only be prescribed if you prove positive for the for Graves Disease antibody TSI/TRab :
Your levels are very high and I hope you will soon feel more comfortable as your thyroid levels drop down into a more range.
Your metabolism has probably gone into overdrive so please ensure your ferritin, folate, B12 and vitamin D are kept at optimal levels to help you ride out this difficult phase.
I trust you have been offered a sick note and if you can try and relax and destress it will be to your advantage. Should you need a little reading, as well as this amazing site, the Elaine Moore Graves Disease foundation website is most informative about all auto immune thyroid conditions and Elaine Moore has Graves Disease as do I.
As SeasideSusie says, the last test (TPO) is a thyroid antibody test which indicates autoimmune thyroid disease. However, although TPO is raised in almost all patients with Hashi's (which is predominantly a hypoactive condition), it is also raised in approx 65% of patients with Graves' disease, a hyperactive condition.
The antibody tests for Graves' are TRAb or TSI, which are normally only ordered by the endocrininologist. Amost all (but not 100%) of Graves' patients have positive antibodies.
It's good that propranolol is taking the edge off your symptoms, but your thyroid levels are very high, and although propranolol can help a bit with this, it's unlikely to have a huge effect. 20mg/day carbimazole is a pretty moderate dose considering your thyroid levels. The concern for people who believe they have Hashi's rather than Graves' is that their levels could drop below the bottom of the range while they are waiting for their first endo appointment. However, you've been offered repeat blood tests in six weeks time, which should catch this. If you suddenly find that you feel very much worse, or (for example) feel cold when everyone else is feeling warm, you an always ask for the test to be brought forward.
You say you have no physical Graves' symptoms, but breathlessness , palpitations and a rapid heart rate are very much Graves' symptoms, because the hyperactive thyroid (whatever the cause) speeds up the metabolism, causing various systems in the body, including the heart, to work that much faster. Carbimazole is reduced to reduce thyroid levels by reducing production of thyroid hormone, it isn't specific to Graves'.
I would keep taking the carbimazole. I was diagnosed with Graves' nearly three years ago , but had to wait a couple of months for my endo appointment (followed by a positive TRAb test). During this time I felt very ill, and then had to wait six weeks or a bit more before the carbimazole really took effect (it works by reducing production of new thyroid hormone, it doesn't destroy whatever you've already got stored in your body), so it was altogether several months before I really saw any improvement. At the time, I would have bitten my GP's hand off for anything that might have helped me get my life back to normal. Even now, being better-informed and accepting that a single hyper test result without TRAb could have been indicative of Hashi's, I would still go for the carbimazole , not least becuse although I was prescribed medication to help with the symptoms, my heart rate was still much faster than it should have been, my sleeping pattern was awful, and the breathlessness and tremor were improved, but didn't go altogether.
Thanks to everyone who has replied. I have ordered the antibody test kit so thanks for that suggestion.
What I wrote about symptoms and Graves comes from my GP who spent so much time examining my neck and eyes and asking about those over and over again. I haven't started the Carbimazole yet and actually with propranolol I feel so much better and I can walk long distances without feeling as if I am going to collapse. Still sweaty and hot but that's fine! I'm self-employed so I need to get back to work as soon as I can - I haven't really been able to work since December so it's a bit tight financially.
I'm going to binge read as much as I can. I am trying to stay positive but I worry that this condition isn't going to go away quickly. I'm sure you know what I mean when I say that I don't really know what normal is anymore.
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