I was diagnosed with graves and an overactive thyroid about 5 years ago. Since then I’ve been treated with carbimazole on and off- 95% of the time off (through my own accord).
I now have terrible symptoms that are having a huge effect on my life. My GP referred me to the hospital again but the soonest available appointment is 6th August... I think he must have put it as low priority. Why am I not being seen urgently? I’ve never had to wait over a month before, and this time my symptoms are 100x worse. Am I right in thinking he’s not taking it as seriously as he should be?
He put me on 40mg carbimazole in the meantime, the recommendation the specialist gave me a year ago, but it has been untreated since then and my symptoms are a million times worse.
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HyperBee01
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You might find that 6th August really is an urgent appointment. Terrible though that seems, we have seen several severely hyperthyroid people have to wait unconscionable times.
You will appreciate that 40 milligrams of carbimazole is a fairly common dose (with the usual maximum quoted as 60 mg). But carbimazole takes time to reduce symptoms.
Are you splitting the dose (e.g. 20 mg morning and evening)? That is usually recommended for initial dosing as it has a short half-life and leaving 24 hours between doses can let your thyroid make more thyroid hormone as its effect wanes before the next dose.
Your GP could also prescribe propranolol - which can reduce the effect of the excess thyroid hormone on your heart. It can also slightly reduce the conversion from T4 to T3.
Have you copies of your most recent test results with ranges you could share ? Were the anti-bodies tested for both Graves and Hashimotos ? If you do not have the results then you could ring the surgery and ask for them - saying you will be along to collect them. They are legally yours.
We have seen a couple of cases where Hyper members have been wrongly treated so hence seeing the test results and knowing what was tested is KEY.
Are you supplementing anything to support your body during this difficult time ?
Hi there sorry you are suffering i do know what it is like having been there myself and still do suffer some symptons i have graves and hashis. But Hevella is right August is within the waiting time really- it does depend on which area you are in too, i waited nearly 3 months and then had my appointment cancelled a further 2 weeks and then appointments are 2 or 3 monthly with further cancellations. August is not too bad but these clinics have lists as long as your arm. The gp has given you treatment to start with so this is the correct way to go at the moment. GOOD LUCK.🍀🌟
Sorry to hear this Hyperbee. Unfortunately, as Helvella and Rmichelle have suggested, the average waiting time for endo appointments seems to be at least twelve weeks at the moment, so it does look as if you’ve been given a reasonably early appointment.
On the plus side, you’ve been started on a fairly high dose of carbimazole, so hopefully this will kick in soon (as you probably know, it can’t reduce stored thyroid hormone, so you may not feel much benefit for a couple of weeks). If your frees are showing a good reduction by the time you see the endo, they may be more receptive to continuing antithyroid treatment rather than considering RAI.
In the meantime, if your symptoms include breathlessness, palpitations and tremor, talk to your GP, as they may be able to prescribe beta blockers to help with this.
From what you say, it sounds as though your symptoms may be worse this time than last. If it’s any encouragement, a year ago I wondered if my life would ever be the same again (my thyroid levels were about double the top of the reference range), but within a couple of months I felt so much better. Now I suspect that much of my remaining lack of fitness is due to my own laziness! Others here have had similar experience.
Hyperbee might get to see the on-call junior endo (assuming that anyone with raging hyperthyroid symptoms has the patience to wait four hours in A&E without tossing teddy out of the pram !), but I'm not sure what they'd do differently given that 40mg/day of carbimazole has already been prescribed. (although obvously, this doesn't apply if Hyperbee feels so unwell that it could be thyroid storm, in which case, A&E is the right place to be)
Twelve months ago, people with hyperactive thyroids were having to wait three months to see an endo and start treatment, in the meantime relying on beta blockers, and maybe a low dose of carbimazole (eg 5mg/day) to take a (barely perceptible) edge off symptoms.
Provided the carbimazole dose is in proportion to thyroid levels, that blood is tested regularly, and warnings given about side-effects etc, the practice we've begun to see recently of beginning therapeutic doses of carbimazole while awaiting the first endo appointment seems a good 'un to me, and would have saved me three months of misery.
The endo then begins to get involved at the point where more complicated decisions re titration or block and replace need to be made, or other options considered. Checking for thyroid eye disease will begin at the same point as previously, although since initially this seems to consist of asking questions about pain in eyes, double vision and colour vision, GPs could begin this process too. From recent posts, it seems that at least some of the GPs prescribing higher doses of antithyroids are involving the local endo team - eg when the dose needs to be reviewed - so perhaps the approach is effectively under specialist supervision, even if this is not immediately obvious to the patient.
In an ideal world, the first endo appointment would be within four weeks, but realistically, that isn't likely to happen any time soon. I do think people need to push to make sure they get all the right tests at a sensible point, including FT3 and antibodies, and I suppose there might be more of an issue for people who are only slightly over range, and therefore more likely to overshoot very quickly, but those who are well over the top of the range could really benefit from this approach.
I recently had an urgent NHS referral for hyperthyroidism - when I contacted the hospital they said minimum wait time was 9 weeks! When I spoke to my GO she said she did the referral as urgent "with advice" or similar term and what that meant was - urgent referral and please advise me what to do in the meantime. GP gave me propanalol at my first appt with results showing I was hyper - so you should definitely have been given this and they were amazingly effective on symptoms. I went private in the end as I didn't want to wait and saw an endo within one working day! He put me on 80mg slow release propanolol which was much better than the tablets three times a day version as I didn't get peaks and troughs of symptoms. So ask for this if you can.
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