Hello lovelies,
I have been taking 10mg Monday, Wednesday, Friday and Sunday, and taking 5mg on the days in-between.
I just suggested to a doctor to change this to 7.5mg daily and was told they won't tell me to split a pill because you can't confirm how much is in each half. Surely this doesn't make any difference if I'm taking the other half the following day? 🙄
Am I missing something or making an incorrect assumption about carbimazole? I thought the 7.5 would give a better stability.
You’re the one with common sense
Lots of people cut their tablets
Get a pill dispenser to safely store for next day
Use sharp craft scalpel or pill cutter
Thank you. Glad I haven't quite lost the plot yet then 😊
So long as you don't actually lose any crumbs, it will absolutely be more even than alternating dose day by day!
5.5 one day, 9.5 the next is better than 5 one day, 10 the next. And you'd have to be extraordinarily bad at splitting to make it that bad. 
You are correct. Doctor is using a silly argument.
A split pill might not give an accurate 50 50 split. This is the argument they automatically stick to but If your prescribed an alternating dose so it’s hardly relevant.
Taking alternating daily dose isn’t an issue either. As it works by temporarily reducing production of new hormone. The circulating free levels are what is relevant.
Do you pay for prescriptions? As you’d be paying 2x for each strength.
I pay pre pay so I pay same fee each month for all items.
If you have 10s & 5s you’d also have to split both to get 7.5 a day. Unless you have all 5s to take 1 and a half. 5s work out cheapest for NHS. 15s are also produced so you could take half a 15 but they are the most expensive and if Doctor thinks your good with 10s & 5s they wouldn't agree to prescribe 15mg pills.
I took alternating dose for years. I also split pills too. Do what suits you & convenient. Doctors don’t know how to fine tune exact doses.
Also helps to look at weekly totals
4x10mg (40) & 3x5mg (15) equals 55mg daily dose.
7.5mgx7 = 52.5mg. So you would be reducing weekly total very slightly.
Any alternating dose based on seven days is ludicrous.
Far better to simply roll forward day by day rather than specific days of the week. That is, 10/5 and repeat. Not something like Sunday and Monday on 10!
It is done like that as Doctors are required to specify the dose & on which days to provide the exact number of pills for the prescription.
Usually 4 days for 1 strength and 3 days for the other. At 1 point I had 10mg on 5 days & 5mg on 3 days. (Yes 8 days). It was prescribed so I had 15 on 1 day and on other days 10 & 5. This was deliberate as the doctor didn’t want to rewrite prescription for other days & strength. It was easier to do 1 increase to a weekday dose - & I had to argue for the extra 10mg!
Thank you. I have 5mg pills, so it's all in the one prescription, but I also use inhalers so I have a prepay cert 😊
Hello again :
Golly it was almost a year ago that you first contacted the forum :
Have you now a diagnosis since you are still on the Anti Thyroid drug - had a quick look back but can't see any updates ?
Hi there, it's been slow going, with rather a few months without any medication whilst waiting to see where I settled following the over medication. Still no definitive diagnosis, but they are leaning towards nodules as the antibodies came back negative. Hopefully will be getting an iodine uptake scan in the next few months
Ok then - just for reference you might like copies of the most recent research we have regarding treatment with an AT drug and treatment of RAI which is a common suggestion from mainstream medical when being treated with an AT medication.
All the AT drug does is ' buy you time ' by semi-blocking your own new daily thyroid hormone production so to try and keep you on a even keel, in range and ticking over and hopefully alleviating the symptoms being experienced.
The T3 and T4 ranges are wide and quite where you need your T3 and T4 to be to metabolise - is the question - as too low a level of T3 and T4 for you - though in range - can result in a slowed metabolism and you experiencing the equally disabling symptoms of hypothyroid.
When metabolism is running too slow as when hypothyroid or too fast as in hyperthyroid the body struggles to extract key nutrients through food, no matter how well and clean you eat.
So to this end suggest you get your core strength vitamins and minerals run - those of ferritin, folate, B12 and vitamin D as if these are not maintained at optimal levels - which we can advise you on - they can compound your health issues, unnecessarily, further.
OK - research paper :- which are written in relation to those dealing with Graves Disease but which the thinking of - long term AT drugs and results of - RAI maybe of interest and concern to you at some point in time.
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
.
Thank you , that'll give me some reading for this eve 😊
They have already started to talk about RAI or surgery, but I've asked for a diagnoses so I can make a fully informed decision. They have been a bit shy about arranging a scan and keep telling me it's doesnt matter whether it's graves or nodules, the treatment is exactly the same 🤔
I know I will have to make the decision between being stabbed or shot eventually. I'm just not prepared to be rushed into it.
“doesnt matter whether it's graves or nodules, the treatment is exactly the same”
Not entirely true.
If you have a hot nodule there is treatment called Radio Frequency Ablation. Which specifically treats nodule\s not hyper\Graves. It’s not a widely available treatment so doctors don’t mention it.
Graves has prospect of remission well beyond the limit doctors suggest. Treating all hyper the same is simplifying things for doctors but not always the best option for you.
It does seem that everything is overly simplified and almost like a flow chart when dealing with any doctors nowadays and given that it's all telephone conversations it won't be long before its all AI at this rate
This is so wrong - you are being conditioned to believe you're between a rock and a hard place - but these research papers say different - and living without a thyroid is not the walk in the park that may have been suggested to you :
So please do your own research as there are other options better suited to patients than hospital out of date thinking, guidelines and treatments.
Do you have there your blood test results from when you first went to the doctor and where are your TSH, Free T3 and Free T4 results and ranges before and now that have resulted in your dose of the AT medication being reduced ?
I'm sure lots of people have been here....Me - Can I have a diagnoses
Dr - but it's treated the same
Me - but recent research says Graves is better off waiting before RAI
Dr - there's lots of research going on, but it's not the current guidelines yet
Give me a mo and I'll dig my results out
Yes - it is difficult as when unwell we rely on medics having our best interests at heart.
I was told at my my very first endo appointment back in 2004 that I was to have RAI the following year as the AT drug was too dangerous to stay on long term - so I drank a toxic substance instead - which I was told was perfectly safe - and live with the consequences that the NHS have no answers for and basically deny the issues - referring to me as a conundrum.
I now self medicate and forced buy my own full spectrum thyroid hormone replacement if I want any QOL as the NHS do not offer all the treatment options that they once did some 20 odd years ago.
We now have research suggesting the opposite though RAI still the first line treatment offered to so many - as it's the cheapest option for the hospital.
I read of forum members who have been on the AT drug for very many years and with no ill effects.
I'm hoping you can see the attached as it won't let me paste from my spreadsheet
So do you have any readings from when originally diagnosed ?
At December 2022 you've a TSH of 32.50 and a T4 at 4.6 - and told to stop the AT as obviously on much too high a dose :
TRAB is the antibody unique to Graves and undetectable in March - and generally the NHS only test this the once - though known to wax and wane throughout one's life .
The titrations in the AT drug are effective - and let's hope this latest tweak sees you more comfortable -
Generally speaking the T3 / T4 ratio is around 1/ 3.50 - 4.00 - T3/T4 - and currently you are running a little fast at around 2.83 - ( just divide your T4 reading by your T3 reading ) -
What symptoms are you currently dealing with ?
Original results from GP testing back in 07/10/2022:-
TSH <0.01 (0.35 - 4.94), FT4 13.4 (9.0 - 19.1), FT3 5.7 (2.4 - 6.0)
Not many symptoms now; Hot, sweaty and bursitis in heels/shoulder. In all honesty I'm just happy that there's no more heart symptoms and I can stand without thinking I'm going to fall over 👍😀
You had very scary symptoms which I'm glad to read are all gone - though sorry about the lingering issues -
Blood tests tend to run behind symptoms being experienced by a couple of weeks and just one measure of what is going -
and it's interesting to see that apart from your TSH being suppressed both your T3 and T4 were in range- though with a T3/T4 ratio of 2.35 so running faster than the norm.
You seemed to be going along ok - but then the June reading has your T3 and T4 almost doubled - did anything happen around then that you remember ?
Initially I was subclinical but apparently beta blockers can't be given to an asthmatic, so was prescribed the carbimazole to treat the palpitations and tachycardia instead.
There was nothing untoward in June, in fact apart from the thyroid I'm possibly the healthiest I've been in ages. It's become a bit of a joke about how many steps I can do each day without going beyond the wheelie bin 😂
Good morning :
Yes I woke up wondering if you had been prescribed Propranolol as I read this beta blocker actually slows the conversion of T4 to T3 and would have probably helped with your faster than normal T3/T4 ratio.
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