Hello everyone, I am a 50 year old male that recently went to my GP about an unrelated matter and following a set of blood results my GP said it looked like I have an over active thyroid. This was confirmed by a second set of results. These are what I have available on an app I downloaded to see my medical record:
I am in shock as I don't really have any of the symptoms I have found on the internet associated with an over active thyroid and have always been pretty healthy. I suppose I have a slightly racing heart and anxiety but this is maybe because of the worry I have had over the past few weeks waiting for a diagnosis. My pulse was always around 68 and the past few days it has been around 74. Blood pressure is 123/71.
My GP has referred me to a hospital (presumably to see an endocrinologist) but that isn't until early October. In the mean time she has prescribed me to take 2 x 5mg carbimazole tablets daily. I haven't yet picked up the tablets as I only spoke with the doctor yesterday. She said maybe I can take these for a while and then the problem will be fixed, but she said there is no guarantee of course.
I am very worried and just wondered if anyone can give me any advice, information or reassurance - I have so many questions bouncing around inside my head and sometimes hunting for information on the internet is difficult in terms of finding accurate advice / avoiding worst-case scenarios etc. Does this all sound a common situation? Is there a good chance the problem can be fixed and I won't experience any severe symptoms? Is carbimazole safe to take?, as my girlfriend has said she doesn't think I should take it and should try and fix the problem with natural remedies or diet change. Personally, I have always been a person who has blind faith in my GP and doctors in general and just trust them to give me the best advice possible. Is it normal to start taking this medication before seeing the specialist at hospital?
Any help is much appreciated, thank you.
Michael
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michaelp69
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If there are no visual signs of a goitre, or a swelling or lump in your throat, the two main reasons why you may have an overactive thyroid are both autoimmune thyroid diseases, Graves and Hahimoto's.
Both these two autoimmune diseases start off with a hyperactive phase, and can be easily confused.
So, it is therefore imperative that an antibody blood test is arranged as the Graves antibodies are the defining medical evidence. These are identified as either TSI - ( roughly translated as a stimulating ) antibody or a TR ab ( roughly translated as a blocking ) antibody. If either, or both of these are positive and over range, this is the medical evidence that your diagnosis is made on and treatment based on.
With Graves the overactivity is constant and needs to be treated with anti thyroid drugs, like Carbimazole to block your own thyroid over production, whilst with Hashimtoto's the overactivity is transient, and your levels will come back down naturally.
There is much to read and understand and might I suggest you look at the Thyroid uk website in the first instance. This is the charity who support this website and there are sections within the new website covering everything you need to know without the alarmist information you might have found on the internet.
You will also read of people on here with both Graves and/ or Hashimoto's and it might all read like Gobblegook - but trust me it does sink in, and make sense.
I'm with Graves post RAI thyroid ablation in 2005 - and now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicating.
Apart from this amazing website I found the Elaine Moore Graves Disease Foundation trust the most well rounded approach to this disease as it does appear poorly understood and badly treated by the medical mainstream.
Elaine's site covers everything you'll likely come across including holistic and more alternative treatment options and there are also chapters which concentrate on the AI component of this disease.
Your thyroid is the victin in all this and not the cause - the cause is your immune system attacking your body, and more importantly when the thyroid is attacked it can be considered life threatening because the thyroid is such a major gland.
Currently mainstream medical do not know or understand how to control or treat the AI component of this disease so recommend by " simply " loosing / removing the offending gland, your thyroid, you're problems are solved, but trust me, it's not that easy .
Welcome to the site I agree with pennyannie and I would have a look at Elaine's site because she helped me over 10 years ago. Just to add I still have my thyroid and don't let your doctor persuade you to have it removed or RAI until you have researched it properly because a lot people struggle afterwards to get the right treatment. The first thing my endocrinologist told me was to have RAI or my thyroid removed. Here I am nearly 12 years later still with my thyroid and it has been bumpy ride but I am glad I ignored his advice.
Looking at those results, I would say you're far more likely to have Hashi's than Grave's. And, if you do have Hashi's - aka Autoimmune Thyroiditis - carbimazole is the wrong treatment. Those high levels will come down by themselves. So, as you don't have any symptoms, I would be inclined, if it were me, to hold off on taking the pills until I'd seen the specialist and had my antibodies tested.
Unfortunately, as good as your GP may be, it's rare to find one that knows much about thyroid. As soon as they see results like yours, they have a knee-jerk reaction and want to treat it like Grave's without doing the proper testing. Often, one has to insist that the proper treatment is done.
But, whether you have Grave's or Hashi's, I'm afraid there are no 'natural' treatments. And, whilst a proper diet might make you feel better, it's not going to have much effect on your thyroid. The treatment for Grave's is carbimazole, with the hope that it will eventually go into remission.
With Hashi's, your immune system is slowly destroying your thyroid. So, whilst you may have hyper periods, and euthyroid periods, the over-all trend is towards hypothyroidism. And, the only treatment that exists is thyroid hormone replacement of some kind - which is hormones, so about as natural as you're going to get - not drugs.
If you choose to delay commencement of your medication until you confirm if you do have Graves then your GP might test Thyroid Stimulating Immunoglobulin (TSI) and /or TSH receptor antibodies (TRAb).
Thyroglobulin (Tg) is for auto immune thyroiditis. Thyroid Peroxidase (TPO) is positive in both auto immune conditions but higher in AIT. Your GP might be leaving it to a specialist to decide if antibodies should be tested, so may refuse to test them but if that’s happens you do have the option to pay for a private test.
When / If you do begin medication agree with your doctor on a regular retesting schedule of your thyroid function. 6 weekly is standard especially when beginning a medication, to see how you respond. You may be compensating for now but getting within a healthy range on the lowest possible dose is the aim. Remaining too high or falling too low in range needs to be prevented. Ensure you are reviewed by fT3 & fT4 and not the TSH which can lag behind considerably.
I began carbimazole before seeing specialist & I don’t have an auto immune cause. GPs usually get advice from specialist at time of referral who recommend the dose you begin on. You have a fairy low dose.
Carbimazole can have side affects, on rare occasions very serious. Your GP hopefully advised you what to be vigilant for such as a sore throat, unusual bruising or mouth ulcers, you will need your white cell count tested if these were to occur. The pharmacist should also provide a detailed patient information leaflet which you should read through, and refer back to.
I haven’t learned of any natural remedies or diets which replaces medication, but there are many who report that good diet and supplements help the condition.
Has your GP tested any key nutrients. Ferritin, Folate, Vitamin D, B12 need your be optimal for good thyroid health and being hyper is said to deplete these nutrients.
For testing blood for thyroid hormones always get the very earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between your last dose of hormones (usually levothyroxine) and the test and take it afterwards.
This method will keep your TSH at its highest as few doctors seem to be very knowledgeable. (TSH = thyroid stimulating hormone) and it is from the pituitary gland which rises to try to increase our T3 (the active thyroid hormone which runs our whole metabolism).
That's fine for people who are hypothyroid, but for people like Michaelp69 who being treated for Graves', it's more important to have regular tests, especially if trying to find an appointment in the week before an endo appointment, than worry too much about timing.
Michaelp69's TSH is currently too low to measure accurately. Even if it were doubled by midday, the chances are that it will still be too low to measure accurately, so the printed result will be the same.
It's becoming more usual to start treatment before seeing a specialist, as waiting list times are extending - and this has probably got worse since covid.
Your thyroid levels are pretty high, which together with your increased heart rate, and taking account of your age could be a cause for concern, so prescribing a low/moderate dose of carbimazole may stop things from getting any worse while waiting for your appointment. You may eventually need an increased dose to bring thyroid levels under control. If you don't take the tablets, you may find that your condition gets worse.
There are two main concerns with beginning medication before seeing a specialist, one is that GPs often seem to prescribe carbimazole without ordering regular retesting (eg every 6 weeks), the other that they know your thyroid results are over range, but not why.
The lack of regular testing isn't too much of a concern in your case as you say you have an appointment with your speciaist in October. They will presumably order a new test then (although it would make a lot of sense to have a test about a week before your appointment, so the endo would have the latest result to hand). The main dangers with lack of testing are a) that whatever is causing your thyroid problems resolves itself, and you could end up in the hypOthyroid range, and b) that your hyperthyroid condition gets worse and you would need an increased dose of carbimazole.
Under normal conditions, the thyroid is regulated via TSH, a signal from the pituitary gland. When thyroid levels are low, TSH levels increase telling the thyroid to produce more hormones; when they are high, TSH drops and hormone production is reduced. Carbimazole reduces hormone production, but doesn't destroy any existing stored hormones. In the event the cause of your excess hormone levels is transient (eg if you have Hashi's), once your stored hormones are exhausted TSH will increase, signalling FT3/FT4 production. If production struggles to compensate because of the carbimazole, FT3/FT4 might be low in range or even dip below it, but this is mitigated to an extent by the fairly low dose of carbimazole you have been prescribed, and the fact that you can expect a new test within 6-8 weeks. On the other hand, if you have Graves' disease, or other cause of over-production of thyroid hormone such as a 'hot' nodule, your thyroid levels could become increasingly worse between now and your specialist appointment, so not beginning medication leaves you open to associated risks, eg those associated with an elevated heart rate. The risk of ending up with thyroid levels which are low/below range between tests if you take medication you may not need must be balanced against the potential risks of being hyper (eg excessive heart rate), which is something you would need to discuss with your GP.
The most common cause of being hyperthyroid is an autoimmune condition known as Graves' Disease. Ideally, you should be tested for this at the outset via antibody tests (TSI or TRAb), but often GPs cannot order this test themselves, and it's also unlikely they will have much experience in interpretation. If the antibody tests are negative, further diagnostic tests may be required...or your thyroid levels may be back within normal range anyway. If your antibody tests are positive, you can expect to be on Carbimazole for at least 12-18 months, so getting started early is a good thing, and may prevent your symptoms from getting any worse. With Graves', the antibodies effectively take over the role of TSH, but unlike TSH, they don't 'switch off' when thyroid levels reach their normal point in the reference range. so thyroid levels continue to increase even though TSH remains too low to measure.
There’s some interesting information in this blog about thyroid antibodies and how they relate to Graves’ disease, Hashimotos and Atropic autoimmune thyroiditis which are the three main types of autoimmune thyroid disease the last one is less common and rarely mentioned.
Hello, sorry to post again but I got my antibody test result today and although expecting it to be positive/high it was actually very normal - Thyroid Peroxidase Antibody Level (TER12451) result was 4 IU/mL where the normal range is <35.
Was any other antibodies tested? You may need more investigation, further antibody testing. When I tested negative for TSI (I didn’t know to ask for other antibody testing) I was I was given an thyroid scan in the nuclear department, I’d previously had 2 ultrasounds. It was to look for active nodules which was the cause of my hyperthyroidism.
30% of Graves patients do not have TPO and 10% do not have TRab according to this link
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