Hi, I've just been reading on another post about side effects from thyroid medication, and its got me a little concerned.
I currently have an over active thyroid, but unfortunately I reacted badly to carbimazole and had to stop it after 3 days as it had significantly reduced my white blood count. This was in early December. Since then I have been taking beta blokers (160mga day), I'm on blood thinners as a precaution and also having to take 8 sachets of colestyramine power a day to control the amount of thyroid hormone in my system
As a result of not being able to take carbimazole I've been told the only other option is to have my thyroid removed. I was also told that propylthiouracil was not an option as it could also have the same effect on your white blood cells.
Now I am a little concerned about any potential reaction I may have to the medication they give me after they've taken my thyroid out
I would be really grateful to hear of anyone else's experiences in this situation
thanks, Judy
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JudyP13
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To have been prescribed an AntiThyroid drug - either Carbimazole or Propylthiouracil ( PTU ) there is usually a diagnosis of Graves Disease - is this your situation ?
To help us better understand and help you better can you please share your initial blood test results and ranges so your TSH - T3 and T4 - and the antibodies found positive and over range in your blood - probably reading as TPO - Tgab - TRab - TSI -
or words to the effect TSH Thyroid Receptor with a single digit and a single digit cut off number :
Both these AT drugs are prescribed for high o/ranges T3/T4 readings or possibly lower but inverted T3/T4 readings - and simply does what it says - blocks your new own daily thyroid hormone production as if with Graves the T3/T4 keep building higher and higher putting undue strain on your body and heart - and Graves - if not medicated is considered life threatening.
A beta blocker can also be prescribed if your heart is involved - which has happened - and generally Propranolol is prescribed ( except for those with Asthma ) as this also acts on the thyroid hormones and slows down the whole process of conversion of T4 into T3.
I think both these AT drugs have similar side effects - I remember my white blood count was low before taking the Carbimazole - and warned about potential side effects - but it was still prescribed as the best option - but I think it's worth a try as living without a thyroid isn't much fun either :
Do you have a goitre - are your eyes dry, gritty, light sensitive, or are you streaming tears ?
How old are you and are there any other health issues that you have been dealing with and what symptoms were you experiencing towards the end of last year, that took to the doctor, this time around ?
I have never heard of any one taking Colestyramine as a treatment for an over active thyroid and have no knowledge of this medicine though a quick search suggested it was prescribed to lower cholesterol levels - can you please explain a little more please ?
Colestyramine does interfere with thyroid hormones. In this situation it probably reduces any recirculation of thyroid hormones (or metabolites such as sulphated forms) that enter the gut.
However, there are lots of warnings. Such as potentially having low vitamin K1, vitamin D, vitamin A, etc.
Might be worth reading the Summary of Patient Characteristics (this is for a randomly selected product but I imagine they are al;l much the same):
yes it and blooming pain 😢 but the Endocrine doctor is wanting me to take so much to get my hormone level down before surgery but I've not had any vitamin or mineral levels tested and as far as I know I seem to tolerate it. I don't know what is happening on the inside but externally no obvious reactions
yes pennyannie the doctor has told me its due to Graves Disease. I don't have a goitre, dry eyes, gritty, light sensitive, or streaming tears. Im 57 and the symptoms was palpitations - sudden onset really of palpitations for 24 hours. I had had palpitations before but only for seconds, but it lasting 24 hours is what took me to the doctors and a blood test show high thyroid levels.
The Colestyramine is I believe an attempt to reduce my thyroid hormone levels as I was told I have nothing controlling the thyroid hormones at the moment.
These are the results I have:
2nd dec
TSH <0.02
T4 - 40.7
T3 - 22.5
on 9th Dec T4 had incrased to 68.9 and T3 28.6 but has since gone dow to T4 60.2 and T3 is down to 19.6
Unfortunately I can't see any results for antibodies found positive and over range in your blood - probably reading as TPO - Tgab - TRab - TSI -
So Graves is a poorly understood and badly treated Auto Immune Disease and as such, there is no cure - and quite why your immune system decided to turn and start attacking your thyroid - the 64 million $ question and you are the only one who may know why:
There can be a genetic predisposition with there being an extended / family member a generation away from you with the thyroid health issue and Graves an be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one - though for others Graves just seems to happen ' out of the blue ' - no two peoples journey with Graves will be the same and probably why its poorly understood - but we do know that stress and anxiety are common triggers for very many if not all dealing with Graves.
Generally the NHS allocate a treatment window of around 15-18 months with an AT drug in the hope that this is enough time for the immune system to calm back down again and the thyroid able to reset itself without the need for any drugs - and for many people this one episode of Graves - is just a blip - and patients health is restored back to their normal .
However there are those for whom the AT drug doesn't work well and remission not an option and then it is suggested that either RAI thyroid ablation or a thyroidectomy is suggested.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mg -
T3 is the active hormone and said to be around 4 times more powerful than the pro-hormone T4 - and for optimal conversion of T4 into T3 in the body we need optimal levels of ferritin, folate, B12 and vitamin D maintained -and conversion of T4 into T3 can also be down graded by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing - so goal posts may well change as you go through your life.
Without a fully functioning thyroid gland in situ the risk of over production of T3/T4 thyroid hormones is gone - you can never go ' hyper ' again - but risk being wrongly / badly managed - and another reason why this forum is so busy.
and the patient is initially prescribed a measured dose of T4 thyroid hormone replacement which will be adjusted at around 2 monthly intervals . until a dose is found that best works for the patient and relieves the symptoms of primary hypothyroidism.
There are 3 main treatment options :
Some people can get by on T4 only medication :
Some find that at some point in time they feel T4 is not working as well as it once did - and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - they vital T3/T4 hormones are restored and they feel better.
others can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3 :
Whilst others find they feel better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroid dried and ground down into a powder and made up into tablets / capsules and the original treatment successfully used to treat hypothyroidism for some 100 years.
Currently the NHS routinely only prescribe T4 and should this not resolve your symptoms you may need to go Private where of course all options are available - or you self source and DIY.
thank you pennyannie that is very well explained. I find it overwhelming to be honest. My mum had an overative thyroid so definitely a genetic predisposition
Hi I was in a similar situation to you about 15 years ago. I was allergic to carbimazol and I couldn't have the alternative due to my lupus. For me they wanted me to take radio iodine, but they were so slow at sorting it that my thyroid normalised after a year and then 6 months later I was underactive. But I have hashimotos thyroid not graves. I waited 8 months to see an endo 15 years ago, not much has changed. I wouldn't worry too much about the levo, on here a lot of people are hear because its difficult for them, but there are probably loads more people who have no problems with levo so they don't have a need to be on here.
Yes - I think T4 - Levothyroxine works very well for around 80% of all those who are prescribed it - and that is a considerable number of people -
We on here - are around the 20% for whom - T4 monotherapy doesn't fully restore our health and well being - and there are also some forum members on here very well and happy of T4 only and simply comes back on to share and give back support to others who are looking for answers.
Glad you missed the RAI - though it was an inappropriate and wrong option for Hashimoto's - wish I had !!
Well it's likely a ball park number - I tend to think we have a slanted opinion and understanding from keep reading a forum focused on helping people with their thyroid health issues -
So yes, we do need to try and keep some perspective !!
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