I was diagnosed with a Hyperthyroid and Grave's Disease six weeks ago by my GP and prescribed Carbizamole 20mg twice a day. I have also been referred to an Endocrinologist with the first appointment next month in three weeks time. I have been told I have been referred as an urgent case.
I've been told the appointment will last up to two hours so am assuming bloods will be done and possibly an ultrasound. I suspect a very short time will be with the actual Endocrinologist.
My query is what else should I expect and what can I do in advance to prepare? I felt so ill at first and didn't ask for printed results of the original blood test when my GP spoke to me. Assuming the hospital have those anyway. Are there any questions people have found useful to ask? I am aware from reading other peoples posts that I am lucky to have this appointment fairly quickly so I want to use it to the full.
Thank you in advance.
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Don’t assume endocrinologist will have any results from GP
Suggest you take results with you
Ideally……You should have bloods retested by GP BEFORE you go to appointment
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
I too have Graves Disease diagnosed in 2003 /4 and was put on Carbimazole and told I was to have RAI thyroid ablation at my very first endocrinology appointment and I didn't know enough, back in 2004, to question this decision and was totally compliant.
Graves is an auto immune disease and your thyroid the victim in all this and not the cause.
The cause is your immune system has been triggered to attack your body, and it is because your thyroid is such a major gland that the symptoms experienced can be said to be life threatening in some people, if not medicated.
There is generally a genetic predisposition, maybe someone in your family a generation away from you is with a thyroid AI disease, and something has triggered your immune system to go on the attack, and read Graves can be triggered by stress and anxiety driven.
There are 2 main reasons why you may have become hyperthyroid, both thyroid AI diseases and they both start with the same symptoms, Graves and Hashimoto's . Some people have Graves and Hashimoto's running together in which case Graves takes precedence.
It is essential that an antibody blood test is run to distinguish which antibodies are positive and over range :
The unique antibodies for Graves are generally written as a TSI ( a thyroid stimulating ) or a TR ab ( a thyroid receptor blocking ) antibody.
Your levels of T3 and T4 keep rising to very high levels and an anti thyroid drug, like Carbimazole is prescribe to block your T3 and T4 rising any further.
The NHS generally allocate a 15-18 month window with treatment with an AT medication in O/P and it is hoped that during this phase the Graves attack subsides and the antibodies reduce and your AT drug maybe titrated down accordingly so you don't fall too far into hypothyroidism.
There may be discussions of just stopping your AT medication to see if you can achieve remission, and this phase of Graves, just a one off " blip " :
There may be suggestions of trying Block and Replace whereby your AT drug continues to block your own thyroid hormones but T4 - Levothyroxine is added back in to the treatment plan, thereby replacing some thyroid hormone so you do not fall too far down the ranges and into hypothyroidism.
There may also be discussions on having a thyroidectomy or RAI thyroid ablation :
Quite why Graves patients get offered different treatment options seems to me to be down to the hospital guidelines and the skill set found in endocrinology.
With Hashimoto's AI thyroid disease it starts off in a similar manner but the T3 and T4 do not rise as high and drop down, back into range by themselves and so anti thyroid medication is not prescribed
The antibodies for Hashimoto's AI thyroid disease are generally expressed as over range TPO and Tg ab :
It will be in your best interest to get copies of all your blood test results and track your T3 and T4 levels, and detail your symptoms as you go through this phase of the disease.
In this way rather than just be a computer numbers equation you can take an active part in discussing how your symptoms have changed with every dose increase/decrease and have an input as to where you felt better on the AT medication.
Your metabolism has gone haywire and hopefully the AT medication has started to have an effect and you are feeling more comfortable.
If your metabolism isn't quite right for you it's likely that you will not be able to extract essential nutrients from your food and you need to keep your core strength strong solid throughout this period. I suggest you ask for your ferritin, folate B12 and vitamin D to also be monitored as we need these at optimal levels and not " just anywhere " in the ranges.
You might like to read around Graves Disease and apart from Thyroid UK, the charity who support this forum, I found the Elaine Moore Graves Disease Foundation website the most well rounded and researched website. Elaine has Graves and went through RAI and finding no help with her continued ill health, and being a medical technologist, decided to start researching this poorly understood and badly treated AI disease herself.
I had been feeling not right for a few weeks, had shaking hands which got worse so that I was shaking all over, breathlessness and palpitations. Also was losing weight drastically. Kept thinking I should see my GP but did nothing about it until I met a friend one afternoon and nearly collapsed. Emergency appointment with my GP the following morning who took one look at me and said I had an overactive thyroid and booked me in for an ECG and blood tests the following week. I was started on Propanolol immediately and Carbizamole the following week when the blood test results came back. Also the referral to see the Endo was sent off. The GP rang me the week after to say that the Graves test had come back positive as well.
I've been six weeks on the Carbizamole, still losing weight. Duracell bunny is spot on. From having no energy and hardly able to walk to the end of the road am very lively in the morning, have a nap in the afternoon and have insomnia most of the night. Endo appointment three weeks time.
Sorry to read you still have these symptoms, maybe you need a higher dose of the AT medication:
My symptoms were relieved by Carbimazole within a week, though can't remember the dose I was prescribed.
The Propanolol is a beta blocker and should relieve the palpitations and feelings of a racing heart.
Please get a copy of this first blood test result from your doctor :
It should include a TSH, T3 and T4 and the Graves antibody that is over range and positive - either a TSI and or a TR ab :
Try and rest, eat clean, and be kind to yourself.
I forgot to mention Graves Rage, it is a " thing, " and well documented.
Being a bit short tempered isn't your normal, but now you maybe feeling a little frayed around the sides and edges - don't worry, maybe print a list of symptoms so your family and friends can have some appreciation of what you are going through.
P.S. I should have also mentioned that there are some Graves forum members that are on long term anti thyroid medication and have taken the AT drugs for years, if and when they feel they need to, as we are, after all, dealing with a stress and anxiety driven AI disease and life doesn't always run as smooth as we might like it to.
I am due to ask for a repeat prescription on the Carbizamole next week so will ask for a copy of the blood results then. Might trigger them into getting another lot done. I have needle phobia very badly so blood tests are a nightmare for me, take ages to do as my veins are rubbish.
I came off the Propanolol within a couple of weeks as it was making me feel very ill, the GP suggested doing so.
Fortunately no Graves Rage I don't think. I'm not grumpy but get a bit low and sad by evening so days.
To some extent, it depends what they think is causing you to be hyperthyroid. If they think it’s Graves’, you should have antibody tests (TRAb or TSI as described by @Pennyannie), but probably not an ultrasound (at least, not in the UK) unless the antibody tests come up negative. There are other causes of hyperthyroidism described here (eg look at leaflets on nodules and swellings and thyroiditis). btf-thyroid.org/Pages/Categ...
They should also explain the treatment plan and how often you can expect to be retested. Typically, in the early stages of treatment with carbimazole, you should be retested every six weeks or so. (FT3, FT4, TSH every time - you will read a lot here about people who are hypO struggling to get TSH tested, but this isn’t usually an issue for people who are hypER.) Most of us get the tests done at our local surgeries using forms provided by the specialist -this is important as sometimes it appears GPs aren’t allowed to order FT3 tests. If you have Graves’, your TSH will probably be too low to measure properly, and won’t be an accurate guide to your thyroid levels, so it’s important to have both FT3 and FT4 tested. . Ask lots of questions and don’t be afraid to make notes.. I found that once I showed an interest, they were happy to take the time and explain things, but not everyone has this experience.
You should already have been warned about a rare but potentially life-threatening side effect of anti thyroid treatment known as agranulocytosis, in which your white blood cell count falls dangerously low, and without treatment you could end up on ITU. The first sign is a sore throat, or sometimes mouth ulcers, and given the current focus on COVID symptoms, it’s really important that if you have a sore throat, you make it clear that you are on carbimazole as you should have a full blood count ASAP. There is more about this on the BTF site (see above), and they also have an information/warning card which you can print off and keep in your purse (maybe even add the info to the ‘emergency details’ screen of your mobile phone). This isn’t said to scare you, it is rare, and the likely side effects of living with high thyroid levels will in most cases outweigh the risk of agranulocytosis, but you do need to be aware of it.
If they suspect Graves’ they should also discuss symptoms of a related but separate condition known as Thyroid Eye Disease. I was asked about changes to my vision at every thyroid clinic for at least the first year of treatment. btf-thyroid.org/thyroid-eye....
They will probably feel your thyroid, which is likely to be swollen., and you will probably be weighed
You don’t mention what symptoms you have or how you are feeling. If your thyroid levels are very high, you may be feeling all sorts of symptoms which may leave you wondering if you will ever feel normal again. The good news is that most people see an improvement as their thyroid levels come down, but it can take a couple of months to get to that stage. If you are feeling palpitations, rapid heart beat, breathlessness or tremors, you may find that a temporary course of beta blockers will help - either your GP or specialist should be able to help with this. It’s worth making a list of your symptoms to take with you - ask friends and family too, they may have noticed that you are on a very short fuse lately even if you think you have been completely reasonable with all the idiots surrounding you !
This may well be a long haul over a couple of years, but hopefully you will begin to feel reasonably well quite soon. Quite a few of us here have hyperthyroid conditions, so feel free to ask questions (it’s worth including ’hyperthyroid’ or ‘Graves’ in the title.
Have collected a printout of my blood test results this afternoon from the GP surgery so have them ready for the appointment. Surgery say no need for more blood tests before my appointment so will wait and see what happens on the day.
If you want anything explained to you within these blood tests, forum members can help you, and then you maybe better prepared with relevant questions, for the endocrinologist appointment.
If this is the case, I'd suggest you start a new post, giving a brief recap of where you are in your thyroid journey and add the results and ranges and just ask for comments.
This post is likely seen as " old " now, and any new information, requires a new post.
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