Were your antibodies tested before Carbimazole was started, to be sure that you are actually overactive and not just having a "hyper" phase of Hashimoto's?
Antibodies for Hashi's (underactive with hyper phases): TP0/TG
Antibodies for Graves (overactive): TSI/TRAbs.
Many members have been wrongly diagnosed and given carbimazole without confirming by testing antibodies first.
No, no further blood tests done. Not sure my gp was totally clued up as he decided he wasn’t giving me meds then got advice from another gp and decided he was. Thanks something to mention when I go back
What would be the affects of having this medication without checking antibodies first??
You need to be tested for Graves antibodies. And if no antibodies you need a thyroid ultrasound to check for nodules. The ultrasound can also pick up hashis if that is the cause.
GP should not be treating you, other than with propranolol to reduce some of the symptoms, if you are hyper, you should have an urgent endo referral. They can get endo advice as part of that referral and can treat you ahead of the endo apt on the basis of that.
Carbimazole should start to bring your thyroid hormones down but you should have been warned about serious potential side effects. Did that happen?
Your FT4 is well over range, but not unusually so for someone recently diagnosed as hyper: with Graves' in particular, some people's results are double the reference range. The dose of carbimazole is a moderate one, and if your results are still high when you see your endo, they may increase this (or your GP may discuss the dose with your endo following your next set of tests, there are local variations in practice).
TSH is created by the pituitary as a signal to the thyroid when it needs to produce more hormone. As your thyroid levels are already high, there is no need for this, so your TSH is low.
Because hypers get referred to endo pretty much straightaway, GPs often don't have a lot of experience of dealing with hyperactive conditions, but at least you appear to be getting the right tests. If you request a printout of your next set of results as soon as they are available, we should be able to help you with a list of questions to ask your GP (or the endo, but it may be a couple of months before your appointment comes through).
Ideally they would test for antibodies straightaway, but at least they are planning to do them at your next scheduled test - hopefully they will test TRAb or TSI and TPO. They should also test FT3, as this can be higher than FT4, and from now on, they are likely to be testing TSH, FT4 and FT3 every four to six weeks....at a push, eight weeks.
The effect of the carbimazole will take a while to become apparent, as it impedes production of new hormone rather than dealing with whatever you've already got in your body. In the meantime, the beta blockers will help with symptoms such as rapid heart rate, palpitations, tremor or breathing difficulties.
Here are some links you may find useful - have a browse, and post again if you have any queries:
If you have too much thyroid hormone circulating in your system, this is either because your thyroid is over-producing (eg Graves' disease, 'hot' nodules), or because it is sick, and dumping stored thyroid hormone (eg Hashi's, or immediately following radioactive iodine treatment). Release of stored hormone is of its nature self-limiting, because the store will eventually be exhausted.
Carbimazole can only deal with over-production of thyroid hormone, so will have comparatively little effect in the case of Hashi's for example (although if TSH is still measurable, it will deal with any ongoing production). This means you could be taking a drug which carries potentially serious side-effects for relatively little benefit. Also (and perhaps of more concern in the short-term), if you were in a hyper phase of Hashi's (which is predominantly a hypo condition), the carbimazole would keep thyroid production suppressed after the stored hormone had been exhausted, potentially pushing you into the hypO range.
The other side of this is that the effects of untreated hyperthyroidism can escalate pretty quickly, leading to heart problems and hospitalisation; this doesn't happen frequently, but it is a concern. Even without this, as you may already have discovered, the symptoms of being hyper can be pretty scary, and in the early weeks, many of us have wondered whether our lives would ever be the same again. In either case, it's pretty important to bring thyroid levels down quickly.
Perhaps the main problem isn't so much that carbimazole is prescribed in the first place (although for people with results that are only slighly elevated, and have few symptoms, that might be the case), but that early monitoring is often inadequate, and if thyroid levels come down very quickly, from what people report here, few endos, and even fewer GPs, seem willing to consider causes other than Graves'. (Note that I have experience of Graves', but absolutely NO medical training!)
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