I found out I have graves disease a couple months ago, my tsh was <0.01, T4 41.2. and t3 19.6. the dr prescribed me 10mg twice a day of carbimazole, by mistake I took 5mg twice a day (half dose) I only realized when I did my blood test 6 weeks later and for my surprise and the dr's, my t3 and t4 were in the normal range but tsh was still the same. She then asked me to take 5mg of carbimazole once a day only and she said that my tsh will take time to normalize and she wants me to be on carbimazole for around 10 more months. I asked her if I could develop Hypo if I keep on taking the meds and she said it was unlikely in she wanted to keep me on 5mg to make sure I can go in remission and dont get it back, and in the mean time we get blood tests every couple months to monitor. My dilemma is: I don't want to keep playing with my hormones for to long and I dont want to become hypo. I would like a second opinion, of course I won't do anything stupid, but I would like to hear opinions, Would it be dangerous to stop the carb now? Could I perhaps t start taking 2.5mg now? Is she right about me staying on carb 5mg for another year?
Appreciate it
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Jman86
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Good plan. & in answer to your question, staying on carbimazole is believed to help stabilise levels. ie while Trab is high there’s a change stopping carbimazole will allow levels to “take off again”
By most ranges FT3 is higher in range so stopping carbimazole completely not good approach.
Long term low dose is far better than stopping & starting as each time you commence carbimazole there seems to be a slightly higher chance of different side affect occurring.
Stopping carbimazole early is only recommend if the lowest dose pushes FT4 & FT3 to below of very low levels. Taking half 5mg doses is also an option.
Carbimazole works by preventing what thyroid hormones can be made. Therefore works only while you continuously take the medication. Doesn’t affect the thyroid itself & the future ability to function.
So the first question is - What have you been diagnosed with ?
Do you have any blood test results showing antibody levels - possibly with initials alongside stating TPO: TgAB : TSI : Tr ab : and any numbers or narrative talking about Thyroid Receptor Blocking or Stimulating : or Thyroid Peroxidase :
The Anti Thyroid - Carbimazole is generally prescribed when there positive and over range TSI or TR ab antibodies and a diagnosis of Graves Disease and this auto immune disease is considered life threatening if not medicated so I wouldn't suggest you stop the treatment if you have Graves Disease.
There are 2 auto immune diseases that start off with over range T3 and T4 readings and it is imperative that the antibodies are run to identify what you are dealing with as with Hashimoto's AI thyroid disease an AT drug should not be prescribed.
Either way we are looking at an auto immune disease and your immune system having malfunctioned and for some reason, turned on you, and started to attack your body rather than act as normal, as the body's defence mechanism.
The AT drug simply blocks your own new daily thyroid hormone production while we wait for your immune system to calm down and your T3 and T4 levels to fall back down into range with hopefully symptoms relieved and this being just a ' blip ' - and your thyroid reverts to normal.
Can you please offer forum members any further details ?
Do you have online access to your medical records and can offer any antibody readings so we know for sure what you are dealing with ?
The good news is your T3 and T4 are back in range, at the moment, and a dose reduction in the AT drug maybe suggested as otherwise your T3 and T4 can keep falling through the ranges too far and then you risk the equally disabling symptoms of hypothyroidism.
What symptoms are you dealing with, have they been relieved now your T3 and T4 are back down in range and are your eyes affected ?
When metabolism isn't sitting quite right for the individual - either too fast as with hyperthyroidism or too slow as with hypothyroidism the body has trouble extracting key nutrients through food, no matter how well and clean you eat.
It is also very important to keep key nutrients, your core strength, strong and solid during this first phase of Graves Disease and suggest you ask for ferritin, folate, B12 and vitamin D to be run and monitor these also, on here if not sure where ' optimal ' is for you, as the NHS ranges are too wide in some instances, to even be sensible.
The NHS allocate around a 15-18 month window with the AT drug and the hope is your immune system calms down - as there is no answer or cure for Graves Disease as we are looking at an AI disease.
No 2 peoples journey with their Graves is the same and why it's poorly understood and managed and would suggest that you try and become your own best advocate and of all the research I found Elaine Moore 's books and website the most interesting especially the chapters on alternative and more holistic treatment options and working on one's own immune system triggers.
There is likely a genetic predisposition with maybe someone a generation away from you with a thyroid health issue and Graves is said to be stress and anxiety driven and can suddenly be triggered by an unexpected shock to the system like a car accident or death of a loved one, though for others, it appears totally out of the blue.
The most recent research is below - so just read and pop under your pillow for now :
For all things Thyroid - Thyroid UK the charity who support this forum - thyroiduk'org
Thank you so much for all the info...In regards to what you said ( at the moment, and a dose reduction in the AT drug maybe suggested as otherwise your T3 and T4 can keep falling through the ranges too far and then you risk the equally disabling symptoms of hypothyroidism), That is what I said to my dr, but she said as I'm on 5 mg only a day this won't push me to Hypo as this is a "maintenance" dose...but she said to keep an eye on my tests. I was hopping to be on 2.5mg for now maybe? Or 5mg every other day not sure...
In regards to symptoms I feel much better now, sometimes I have a little tremor on legs and hands but very light, just one day last week I felt really weak, dizzy and shaky but it went away after I ate something.
I cut gluten, sugar , dairy and all processed food from my diet since about 6 werks ago so I think this is also helping me, maybe is a bit extreme but I went all in 😂
I will ask for all the vitamins test also, and thank you for the recommendation to read 🙂
Ok then - suggest you buy a pill cutter as if you are suggested to go 5mcg every other day it is better to take the same dose every day - so just be prepared to halve the AT drug should the need arise.
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This is the third time I have been on Carbimazole and Endo suggests staying on 20mg but I have been taking 10mg since January and six weeks into AIP diet. Still feel quite happy on elimination phase and haven't introduced anything back in yet. Last blood test 30th Jan was told FT4 normal at 20. No other info! To be honest I'm very disappointed with the communication here in Dumfries Galloway. I have had MRI on head and orbitals in Nov and have heard nothing from ophthalmology despite me contacting them 3 times to ask what the next stage is. I feel like they want to keep me in the dark for some reason but feel quite happy to stick to my own diet plan and may reduce Carbimazole to 5mg if they suggest I take 10mg.
You might find it of interest what happened when I was first treated for Graves 7 years ago. I was started on 20mg. Carbm. Over the next few months this had to be reduced 15mg./ 10/ 5 then stopped as I became more and more hypo and TED started. (TSH was up at 38) However as soon as Carbm was stopped I became hyper again (TRAb was 12 ) I was then put on a block and replace regimen. With hindsight and knowing so much more than I did then I would have stayed on 5mg. reducing to 2.5mg. If necessary. With regular blood tests I would have happily stayed on this low dose until my antibodies reduced.
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