Hi, just been reading everyone's comments about RAI or surgery and I am shocked that I have a choice I was told I only had the 2 options and that staying on carbizmole 5mg was not an option. I now know I am being forced by my hospital rather than being given a choice. So glad I found your posts. I was being scheduled to get RAI on the 30th I think I will now be telling them no thanks
Overactive Thyroid: Hi, just been reading... - Thyroid UK
You have a choice. You have to sign a consent form for RAI. No one can bamboozle you into anything. As long as it’s an informed choice, it’s yours to make.
I was told at my first appointment I would probably need RAI. Specialist didn’t want to discuss surgery as a potential option. I had another test & received a 2 min phone call telling me RAI was the plan. I had been diagnosed for 2 months. The doctor didn’t even want to answer any queries I had regarding the treatment but said it would all be on the paperwork.
It wasn’t ... the paperwork consisted of a form I was meant to sign and send back. No answers at all. I phoned various departments and eventually spoke to a technician in the nuclear department, he told me the instructions I was after would be advised at the time of the treatment.
I thought if this is how I’m treated before treatment did I want the same care after? That’s when I decided to file that form & it’s still there with the 4 BTF hospital leaflets they keep sending to me promoting the treatment.
Doctors should fully discuss every option but they are rushing the process. They can’t dictate treatment to you, or force you.
5mg is a very low dose. Doctors view 5mg as lowest possible, but in some instances the dose required can be taken lower by alternating days or breaking a pill in two.
Do you have your TSH, FT4 & FT3 results?
Was the cause of your hyper confirmed?
Hi purplenails, I have looked through all my paperwork and the only thing I found was at one time my to was low? I have no idea what any of it means. I intend to call the surgery on my break tomorrow to request a copy of all my medical file regarding my thyroid and will report then. Thanks again everyone
That should have said T 4 was low
When diagnosed hyper usually your thyroid stimulating hormone (TSH) is under range or <0.01 which means undetectable. The TSH is a pituitary hormone which signals the thyroid to produce new thyroxine (T4) and triiodothyronine (T3). So when hormones are high & over range the TSH lowers (reducing production). The opposite occurs with under active thyroid.
Often doctors test only TSH but is isn’t adequate, you need the Free (unbound) hormones tested FT4 & FT3. Sometimes Total T4 & T3 is tested but it doesn’t give as useful information.
I’ll guess the low FT4 result was AFTER you’d been on carbimazole for some time and it had driven down your levels. At which time you dose was reduced? (Hopefully?)
At least I hope that’s what you can confirm as otherwise commencing carbimazole requirement is questionable.
Arranging online access to medical records is ideal as you arethen able to view results without involving staff who can be evasive. This can take time to set up. You are legally entitled to your own record so in the mean time contact the surgery reception (not doctor) and obtain an actual print out. Don’t accept verbal or hand scribbled notes you need a copy with ranges (ranges vary between labs). They shouldn’t ask why but if they do just say for your records.
Also, should you wish you can edit a post by going to “more” & “edit” at bottom of each reply.
Hi purplenails, just requested a copy of all blood works regarding my thyroid. The receptionist was attempting to only provide last 2 and I informed her I have been receiving treatment for just under 3 years and want every report so I can decide what treatment I will be taking. Wish me luck. At the moment i have no clue what any of my results are but I intend to get everything I need thanks to you, jazzw and pennyannie. I just remember that when the doctors had my girst blood results it was at a dangerous level and this is what made them start immediate carbizmole. I have memory issues so apologise for my lack of knowledge
I hope you get all your results soon and well done for standing your ground, it can be difficult when they try to be obstructive.
Once you start to organise your results and check what’s been tested, I’m sure it will start to all make sense.
This forum will be here to help if you need any guidance.
I had 5 years on carbimazole - maintenance dose 5mg per day. I also had 3 trials of coming off carbimazole and quickly went hyper again. The endo I was seeing at that time was not a fan of permanent carbimazole and as I had never felt well over those years I was pleased to get RAI.
It is very much a personal choice though and you should have trial periods of no carbimazole to see if you relapse or not.
Hi Lalatoot, I have only been taken off carbizmole once snd my flare up was very quick and was horrendous and have been on the 5mg ever since with regular bloods being taken to check levels
Hey there Hip and welcome to the forum :
If you want to give us more details on your situation feel free.
RAI is generally the first treatment option promoted - as it's the cheapest but this is not necessarily in your best interests.
You might like to start reading up - Elaine Moore Graves Disease Foundation website is well researched and over the past 20 odd years Elaine has written several books and now offers an open forum much like this amazing platform.
If diagnosed Graves Disease, this is an autoimmune disease that attacks the thyroid and it is because the thyroid is such a major gland that the symptoms suffered take you to the doctor.
The thyroid is the victim in all this and not th cause :
The cause is your immune system attacking your body.
Loosing your thyroid to Graves may compound your health issues and you need to be very sure of what you are doing.
If your journey has been fraught with hyperthyroidism, it's one thing, but if your journey has been seemingly ok, it's a different situation and maybe taking a hammer to crack a nut - not necessary nor sensible.
There is a number of specialists who believe long term AT medication the better option.
There is also a similar number of specialist who believe the thyroid should be disabled and either surgically removed or burnt out in situ with RAI :
It might all come down to the rules and guidelines set down within the hospital for their understanding and treatment of Graves Disease.
Please do your research : if in any doubt - don't - as it's invasive and irreversible :
There is an article on here somewhere, apologies I'm self taught, by Professor A Toft :
entitled Thyroid Hormone Replacement - A Counterblast to Guidelines which says it all - and from which I quote :
" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasing reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Grave's disease irrespective of age or number of recurrences of hyperthyroidism.
Check out this man's career - and he wrote this in his final NHS years before retirement in 2017.
I think he has seen a lot more than any of us, and it's interesting as to what he does, and doesn't say regarding current guidelines and dogma.
Hi, pennyannie I was diagnosed with Graves Disease 3 years ago and was initially put on 40mg then took off it all together then because of several flare ups I was put back on them at 5mg which seems to control it just fine. I really hate the idea of IRA and its impossible for me to take that amount of time of work or sleep apart from my boyfriend as we only stay in a 1 bedroom apartment. I will definitely read up on Graves Disease. I genuinely believe carbizmole suits my body just fine.
Well, in the first instance do you have copies of your blood work :
Have you had any positive and over range antibodies unique to Graves Disease - they are generally written as a TSI ( written as a thyroid stimulating ) or a TR ab ( written as a thyroid receptor blocking thyroid ) antibody :
There are 2 thyroid autoimmune diseases and they both initially express as hyperthyroidism and the only way to tell Graves and Hashimoto's apart is through the presence of certain antibodies.
Graves tends to be continuous high T3 and T4 levels whereas Hashimoto's tends to be transient episodes of hyperthyroid.
The treatment for Hashimoto's is not the same as the treatment for Graves and I think you need to look back and ensure which antibodies are positive and the medical evidence and proof of diagnosis.
Hi pennyannie, I will look out my original diagnosis paperwork and let you know. I dont believe I was giving a breakdown of my levels but may be wrong. Both yourself and Jazzw seem more medically minded than me that's for sure 😊 I am trying to keep up
OK then -
Always ask for copies of any blood test results :
You are legally entitled to access of all your medical records, so this would be worth setting up if you haven't already with your primary care doctor.
Hindsight is a wonderful thing - I was diagnosed Graves back in 2003 and had RAI in 2005 - didn't know anything just followed what I was told and learnt of my own situation 15 years too late - I'm now a Humpty Dumpty putting myself back together again.
It’s also worth knowing this may not be Graves Disease at all. Many GPs (and increasingly endocrinologists) don’t do the full range of tests to differentiate between Hashimoto’s and Graves.
If your hyper phase is “early” Hashimoto’s then eventually your thyroid will slow down and you’ll end up on replacement levothyroxine without ever needing RAI or surgery.
It can be alarming to discover how little the medical profession know about thyroid disorders but I promise you it isn’t really all that complicated for a layperson to understand—you just need information.
If you haven’t got access to your thyroid function tests, ask for a copy and if you’d like to, by all means post them here to see if we can help you make sense of them.
Hi Jazzw, I have never been made aware of Hashimotos however the results of the tests after 15months of suffering came back saying my thyroid levels were at a dangerous low level and I risked my bones etc suffering so was put on the carbizmole and the only time I have flare ups is when the doctors mess with my dosage
Yes, they do like to mess with things.
I’m not an expert on hyperthyroidism but ideally endocrinologists should attempt to identify what’s behind it.
There are different thyroid antibodies to test for:
Antithyroid Peroxidase Antibody or TPO Ab (Ab is short for antibody)
Antithyroglobulin Antibody or TG Ab
Thyroid Stimulating Immunoglobulin or TSI Ab
I think I’m right to say that a Graves diagnosis hinges on the results of TSI Ab—the other antibodies (TPO and TGAb) may be present in cases of both Hashimoto’s and Graves.
I’m sure someone will jump in and put me straight if I’ve got that wrong. pennyannie - is that right??
But it’s well worth you finding out what’s been tested. We often assume doctors do thorough testing before prescribing treatment but sadly that isn’t always the case...
Antibody testing is needed to confirm Graves or Hashimoto disease
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