Do you know which antibodies he tested? I think that's a very serious admission on his part. Treating for a year before doing the correct testing? That's bad.
Well, depends which antibodies he's testing for. If you have high Hashi's antibodies causing the high FT4 and low TSH, you wouldn't want carbi. Not long-term, anyway. And, if there are no Grave's antibodies, the odds are you have Hashi's. But, most endos don't seem to know the difference!
At this stage, a three month gap to see the endo may be ok, but I’d have thought you should have at least one more blood test in that time.
Do you know the ranges for the tests ? (Typically in brackets after the results). Your starting levels look quite low (but not impossible) for Graves’, and your levels have been brought into line pretty quickly with a low dose of Carbimazole. Your TSH also came back up pretty quickly.
It’s not that Carbimazole is the wrong treatment for other causes of being hyper, so much as that for Graves’, you can expect to be on it for twelve to eighteen months, whereas for other causes, this is unlikely to be necessary. (or even appropriate) .
As for the lack of explanation, providing the level of explanation required by the patient is as much part of being a good doctor as diagnostic skills and having lots of bits of paper with fancy qualifications.
Except that, after more than 6 months of treatment, the Graves’ antibodies may be reduced anyway ! Oh well, better to test late than never, I guess, but this really isn’t good.
Somehow your original blood tests seem too close to normal to be Graves. My T4 was 70 when I was first diagnosed. My guess is like Grey Goose, that you have Hashimoto’s and no longer need carbimazole. At the rate you are going, you will soon end up hypothyroid. I think if I were you, I would make sure to get the antibody results and then post them here for advice.
Does it mean swinging from high to low, high to low all the time?
Endo said it was likely that I had Graves originally without testing. I actually asked him did he think I had Graves and Hashimotos was never mentioned.
Is Hashis hard to manage? (I realise I don’t know for sure yet!)
I hope some Hashis experts will answer this, as I am a Graves’ person but basically yes, the antibodies of Hashis slowly destroy the thyroid and they come in peaks and troughs, so patients never know quite where they are. Doctors do not seem to understand this and we have seen numerous people on this site who will confirm they had a wrong diagnosis, simply because their GP was too lazy or ignorant to test for which antibodies are present. Graves’ antibodies attack the thyroid in a different way and stimulate it to keep producing more and more T4, hence the level is usually very high when tested. I may be very wrong but you must find out quickly what you are dealing with, as treatment is different.
I’m astounded that your endo would say that you have Graves without testing for antibodies before he makes his diagnosis he clearly has the gift of x ray vision or something similar that lets him see through the human body and know things that other mortals would have to do a blood test to know.
I’ve heard of people saying their doctor found antibodies on their first blood test and refuse to test again but not this way round. It’s the presence of antibodies that give the glue to Graves or Hashimoto’s. I was going to say ‘words fail me’ but obviously they don’t!
He’s right about the nodules, and they don’t usually do an ultrasound for Graves’. However, having the ultrasound itself would only worry you unduly if you weren’t given a competent explanation of the results ! (Was he patting you on the head while he was talking ?!)
About a week after I started on carbimazole I took a throat infection, high temp and elevated heart rate and my T4 went up to 26. The following week I was retested and T4 rose to 29.
It has been lower ever since.
I did a lot of fitness before diagnosis and would have had good muscle mass but that’s all gone - bony shoulders now and not as much flesh.
We’re you told that if you get a sore throat while on carbi, you should go to your GP (or even A&E) for a white cell count ? (See “side effects” here btf-thyroid.org/information...
If not, your endo should be shot !
Carbimazole can reduce white cell count to a dangerously low level, leading to an infection for which hospitalisation is necessary. It’s a very rare side-effect, and you don’t need to dwell on it, but it’s important you are aware.
I just noticed from looking through your history of postings (to see if they gave any more clues about Graves versus Hashis) that you were asking about watery, stingy eyes. I get that too, particularly when I am at our holiday home in France and I wonder whether it is something they are spraying on crops. My absolute star performer for this is an organic camomile tea bag. Make it as normal with boiling water and then leave the tea bag to cool off. Then squeeze out the liquid and use it to bathe the eye, with lots of changes of cotton wool pads. I make sure liquid gets into the eye and do it for about five minutes. Twenty minutes to half an hour later, it is absolutely fine. Very safe and always works. You can use camomile for tooth ache too. Just put the tea bag on a tooth and leave it for ages. If only these old, safe, herbal remedies had not been ousted by Big Pharma! And no, I am not a nut case. Just prefer anything natural over nasty chemicals.
As for the carbimazole, I hesitate to give advice on that, as my levels went up and down so quickly I was having weekly blood tests via my GP and could see what was going on. To wait three months is dangerous and ludicrous and if I were you, I would be making a lot of noise either with the endo, or with my GP. Do they do any monitoring or is it all left to the endo? I am sorry to say that from this site alone, it is obvious that we have to look out for ourselves nowadays and not rely on any one medical person for help but first you need to be sure of what you have and until then, we are all guessing...
Pretty much the situation I find myself in. You’re not in Dorset are you? Because my Endo said almost the same things regarding Graves! No antibody test and just an external exam of the neck to diagnose Graves!!! Since coming on this forum I have found how wholly inaccurate that method of diagnosis is.
Anyway, my point is that after being on carbimazole for a couple of months I felt awful, so tired I couldn’t function and achy stiff joints, muscle weekends, weight gain (1stone in 1 month!) and generally feeling worse. So I stopped. That was my decision and not a recommendation btw. However, my recent results suggest that I am now hypo rather than hyper and this in turn suggests Hashimoto’s rather than Graves. My appointments with Endo are 4 months apart and next one is September. Also, my GP won’t see me until I see the Endo so no help forthcoming.
I’m having bloods done by Medicheck now to test everything and hopefully give me some ammunition!
Best of luck and btw camomile teabags are great for all minor infections but particularly sore eyes/styes and hayfever x
Yes it seems that we are just abandoned for a few months and left to worry.
I don’t know how quick these hormones fluctuate. Do the endos even know? You just feel insecure with it all especially when they don’t provide you with any information or even tell you what the treatment plan is?
Is there a different GP in your practice that will be more useful and order new blood tests? You need to emphasise that you are not feeling well and need to know where your levels are and also test antibodies, unless you can get the earlier results, if any were done.
I cannot understand the prevailing attitude. When I was diagnosed, everything happened very quickly and I saw an Endo within two weeks, which was stipulated at that time by the NHS for all Graves’ cases. Then my practice happily did blood tests if I told them I felt unwell and was worried about my levels. You must be more insistent, I think and make a nuisance of yourself. It is your body, not theirs...
Yes, but if you are not due to see an endo for three months, someone needs to do something. They cannot just leave you on a powerful medication without checking more regularly at this early stage.
They should test TPO for Graves but also the one for Hashimotos. Do not just listen, however, but ask them either to leave a copy of all tests for you to collect or to patiently read out all results while you write them down and you must also include the reference range for each result. They are not doing you a favour - it is your right to have them.
You will need to stay on Carbimazole for twelve months altogether, maybe longer if your levels rise again (which can happen). At some point, they will probably reduce your dose to 2.5mg/day, or even every other day.
TRAb or TSI for Graves’; positive TPO indicates autoimmune disease, and is present in most cases of Hashi’s and 65% of Graves’ cases. (Anecdotally, from results people have posted here, TPO levels are typically much higher for those with Hashi’s than those with Graves’).
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