I started noticing a tremor & high heart rate in October & noticed I’m always hot. Had bloods thru my GP in Dec & confirmed over active & given propranolol, which I take if I feel particularly jittery especially at night.
I had a call from my Gp saying to start Carbimazole asap. It is only 10mg as I’m sensitive to chemicals. First day I had the headache from hell & couldn’t work. My self employed & look after my mum so I have to work. I stopped taking it as I was basically too worried about feeling that ill again. Having read the posts I understand I need to see my blood results. I’m wondering whether to hold off taking the tabs til I’ve shared the results with you here or whether I just bite the bullet & take them. I’m always nervous taking meds & it took me ages before I tried the propranolol. Is there anything I can do to minimise potential side effects?
Thankyou
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BFGsgirl
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So we can offer better advice, can you share your blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Antibody tests are very important.Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:
TRab TSH receptor antibodies
TSI Thyroid-Stimulating Immunoglobulin
I was initially diagnosed with Graves, largely due to symptoms (anxiety, tremor, palpitations, sweating, weight loss, plus TED) but following advice here I later tested the above and found I was in fact negative. Instead, I tested positive for Hashimotos (underactive).
TPO & TG antibodies may be Graves or Hashimotos:
TPOab Thyroid Peroxidase antibodies
TGab Thyroglobulin antibodies
Key vitamin tests (ferritin, folate, vitamins D and B12) are also highly recommended, as these support thyroid health. Please don’t supplement without testing levels first.
If your GP is unable to complete all the above tests, you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
I did find propranolol useful for lowering my heart rate, reducing tremor etc. I personally would not increase carbimazole further until you’ve checked that the correct antibody tests have been completed to confirm Graves.
Yes, you are right as we need to see blood test results and ranges to know what's going on rather than guess from symptoms being experienced and get things wrong.
Do you have online access to your medical records at the doctors as you can then view these blood tests results and share them with us ?
If not the receptionist can give you the results - and it's best to just ask for a copy of this set of blood test results and ranges - so there's no risk of mishearing what was said and having incomplete information and having to phone again, and feel like a nuisance ( as I did ) !!
Just ask if you can pick up a copy of your blood test results and suggest you pop in to collect them in a couple of days and will then register for online access.
There are several reasons for this episode being experienced and the Propranolol has been prescribed to just try and ease the symptoms - what about taking half the prescribed dose if your symptoms are upsetting you too much - just till we know what has been diagnosed and have the blood test results ?
10mg carbimazole is a low starting dose & important to see your results & if the level is appropriate for FT4 & FT3 levels. Many want to confirm the cause of hyper first & delay carbimazole unless there is evidence the hyper is continuous not transient.
Doctors consider hyper dangerous & are less concerned with driving down thyroid levels too quickly short term, but without testing it’s uncertain.
I took 20mg carbimazole when prescribed & cause was not confirmed for several months, the dose should have been reduced earlier but I did / still do need treatment.
It’s beneficial to start with taking carbimazole at spaced intervals eg 2 x 5mg at - 08.00 & 20.00.
What dose propranolol were you prescribed? I find I’m very sensitive with propranolol, I was initially prescribed 3x40mg propranolol per day & taking a dose late would cause migrainous headaches. I think this is similar to rebound headaches. Specialist stopped it abruptly & I was unwell, GP put me back on it as permanent migraine preventer, I have managed to reduced it to very low dose, but must take it on time. So taking propranolol ‘as and when’ might be your issue rather than then a first dose of carbimazole.
Thankyou so much Purplenails. I do not take the propranolol often…I might go a week without any at all & then other times I take 2 in one day. I can take up to 8 in a day & I have never taken more than 2. They are 10mg tabs.
I was intrigued about your suggestion of splitting the carbimazole dose so could I cut it in half & split the dose over the day? That might give me better tolerance. It is 1 x10mg. I only started symptoms in Oct & was diagnosed in Dec. Very early days for me
I am going to get the test results soon as poss & considering going private for more tests too. I have had huge stresses this year & I wonder if it is possible for this to be non permanent & caused by stress…not sure if that’s a thing
Doesn’t sound like your having issue with propranolol - so fine to carry on as you are.
Lower doses of carbimazole may help with tolerating ingredients but the main benefit is with how carbimazole works. It prevents how much new hormone can be made. Longer gaps between doses means the thyroid has more time to start producing again. It’s more relevant with higher doses but you are introducing a new medicine so likely beneficial.
Manufacturers advise that pills should be taken whole (likely to ensure exact amounts) but many find they need to split doses to make up the right amount. Especially when on lower doses & when fine tuning to the right dose is required.
They do come in 5mg. & 5mg tablets work out far less expense for NHS too - not that you should worry about that aspect.
I hope it is a transient issue, but this would be the exception, I suspect you may find you’ll have thyroid issues for the long term, if not life long. - Sorry, that not news anyone want to learn, but the good news is - if managed correctly you can be well on the right treatment. You can help yourself to wellness faster by learning on this forum & advocating for best treatment.
Tracking testing & results is vital for this - You can legally view all your results. Either ask reception for a printed copy. [With lab ranges]. NOT verbal or handwritten or typed by email (they won’t include results & too high chance of error).
Setting up online access to digital record is best method and includes notes, letters & referrals, but in meantime - Request copies. Sometimes staff want to confirm you can view results - but once they’ve been read & filed there no reason to obstruct. Before I had online access I would telephone reception in advance, ask for results -a time period or date helps- & then say I collect in 2 working days. This gives then time to print.
Stressors can trigger thyroid issues, but in most cases they do have a lingering affect.
With Hyper Graves treatment is set for about 18 months, often longer is needed. The aim is anti thyroid control the high levels until it naturally goes into remission.
With Hashimoto’s the hyper levels are temporarily caused by immune attack damage - the thyroid cells release hormones stores but ultimately the damage leads to reduced function (this is treated with replacement)
Many report they were treated for short term for hyper - then months / years later have diagnosis for hypo. The reality being the hyper was low level transient hyper & they had been hypo & in need to replacement far sooner than arranged.
Thankyou so much. Would you say that it is worth getting private tests done or should I post my Drs tests first to see how comprehensive they are? I have little faith in my GP if I’m honest & was hoping for a fast referral to a specialist. I’m a professional singer so thyroid can have implications for me work wise. Thanks for everyone so far
You’ll very likely make faster progress arranging your own test & getting complete information & full picture in 1 go.
While some doctors accept results be aware some will not & not want to engage - In which case you have ground to insist they repeat their own “valid” test.
When GP & specialist are involved they often don’t test everything & not at same time. Look for a test with Thyroid function, key nutrients & Thyroid antibodies.
Here’s a list of companies offering different tests some have discounts available
(Medichecks advanced thyroid might be good option)
You order test online - the kits arrives via post - sample can be taken by finger prick (extra fee for private venous draw). Post back and results available online usually quite quickly.
As doctors suspect hyper & graves you really need TSI or Trab antibodies tested & unfortunately these are specialist, venous draw only & more expensive & take longer to process,
GP likely leaving it for specialist to arrange & waiting for appointment could take time.
Medichecks does this “graves antibody” test. Which is for TRab. For some reason they have written stimulating antibodies. I believe this is misleading.
TRab THS receptor antibodies includes all antibodies affecting the TSH receptors which includes blocking, neutral & stimulating.
Thyroid stimulating immunoglobulin (TSI) is the stimulating only & a separate test.
Both TSI or TRab are accepted evidence of Graves.
You could see if thyroid advanced & graves antibody can be taken in 1 venous draw appointments? (I’ve only ever done finger prick - so not certain)
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