for the love of sky fairies trying to get the balance is doing my head in … was on 1.25mg (albeit self medicated) but over about 6 weeks I think I was slowly getting hyper symptoms so started 2.5mg then 1.25mg the 2.5mg and so on … started to feel a bit better almost immediately -yay go me - but within days I’m now getting opposites symptoms creeping (I react fast to changes in this medication I have discovered) I’m now tired, swelling slightly, skin is drying out very quickly, cold, puffy face and the depression has hit like a tonne of bricks 😡 and no hunger - I had a small breakfast and lunch etc it’s now 19.30 and I’m waiting to get hungry to cook a bit of dinner …?
I think cutting the tiny pill to 1.25mg was disintegrating it to practically nothing therefore practically nothing was going in - thinking of trying just 2.5mg every other day as I think that was ok but thought silt was best but clearly not 🤷♀️ I’m at a loss with damn medication I’m just so sensitive to the stupid stuff 🤬
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They don’t seem keen to try me on anything else but im thinking I might have to beg at my next appointment but I think it might be unlikely they’ll swap me
Not sure it's going to help as... Carbimazole is available in 5mg and 20mg tablets, while PTU comes only in 50mg tablets. When substituting, carbimazole 1 mg is considered equivalent to propylthiouracil 10 mg.
I've just switched from carbimazole to PTU. The consultant said PTU only available in 50mg and 100mg but patient information leaflet says "Propylthiouracil 25 mg, 50 mg and 100mg Tablets". I've got the 50mg tablets as I'm on 2 x 50mg daily. Hoping to go down to 50mg at next review in January. Would be great if they are available in 25mg
What were your last blood results? I am slightly hyper at the moment but I can cope with it because i have been much worse. Mine is stress induced and I am trying to ride it out for now. I wouldn’t advise anyone else to do the same. I have been living with Graves’ for 15 years now
I am not surprised you need to settle on a certain dose and give it tine to work. The TSH always lags behind. Mine is not an indication of how my thyroid is working. It is usually between 0.38 and 0.56 when I am feeling well. My T4,is usually at the top of the range but it suits me. We are all individuals and nobody is the same.
Do you know what your levels were when you felt well?
Honestly? I’ve never felt “well” on this medication however when I’ve reduced it I usually have a few weeks where I’ve felt ok before i feel like I’m going high again so guessing I sit better at the top of the T4 range - my TSH has had no impact on the way I feel this far
My TSH has been skewed by the blocking antibodies it no longer works. I really need to get my bloods done. I have been neglecting my health because of family problems. I have had a stressful couple of years a bereavement and this year my car was stolen after my house was broken into and the keys taken. I am checking the CCTV all through the night just incase. Graves’ is stress driven so I know why I am hyper at the moment
some one needs to check my maths , but , if 1.25/ day is not enough and 1.87/ day is too much. then some where inbetween could be to miss every third day
2.5 / 2.5 / 0 / 2.5 /2.5 / 0 .... cont.
that ( theoretically) gives 1.66/ day
i have no idea if it would work out like that in practice though . and i've never taken it ( so i don't know what i'm talking about ... just doing late night maths )
Some makes expressly say not to split. I do not know why. But if there is a good reason (rather than saying it because they always say it), then it might matter which make you receive.
You should still get the Patient Information Leaflet each and every time you get your prescription dispensed. My blog has the full requirements for supplying PILs as published by the MHRA.
Grabbing a PIL from a different product is forbidden.
MHRA - Patient Information Leaflet
The MHRA requirements regarding Patient Information Leaflets.
Can I be honest? The pharmacy in the village is nothing short of deadly .... I've had so many problems - once they "reconciled" my medication against GP instruction - had to fight to get this god awful medication on numerous occasions... swapping pharmacies means I'll have to drive to pick up my meds but I'm now at the point where they're dangerous to my health - will contact GP to see if I can swap ... thank you x
You can always ask a pharmacist about carbimazole. I worked in a hospital pharmacy and they have studied everything about drugs for 4 years. Doctors were always popping in to chat to them and ask advice about drugs. I always look up everything I am prescribed on the BNF for side effects etc. They are more knowledgeable about drugs than doctors in my opinion
Carbimazole has 10 & 15 too, 15 are very expensive but dr insist I have them, even when I said I happier with a 3x 5mg as I suit the brand. Clinical pharmacist then changed it to 10 plus 5, likely due to cost but I get annoyed I have to mix brands.
You are already on what drs consider the lowest dose, they simply don’t understand sometimes fine tuning requires we need a tiny fraction.
I’ve no idea how easy it is to split a PTU pill.
Do you think you could lengthen the time? Take every other day?
Yes this last repeatedly told me whilst I was suffering with hypo symptoms “so you’re on low dose of 5mg daily” I said it’s not a low dose for my body and it was ignored as usual … but I was already only taking 2.5mg daily then …
They have clue how many of us just manage our own meds do they 😂
I've just switched to PTU but recently I was prescribed 15mg of carbimazole. It was a private prescription as I've been seeing a private endo. When the cost came through it was nearly £100. I asked the pharmacist if I could have the equivalent prescription in 5mg tablets. They amended the prescription and it was something like £16. Apart from anything else I liked the 5mg tablets because I could spread them through the day.
I agree, I like to spread them out too. & they are smaller in size.
If fine tuning dose mean you reduce 1 every 3rd day having 5mg tablets give more flexibility too.
Ideally we can discuss & agree dose with dr, but the set doses are too ridged & doctors assume it’s not important. Our symtoms if we’re sensitive to dose say otherwise.
I alway speak to doctor if I think an adjustment over 5mg is necessary. I had some arguments, & that been more about Doctor not wanting the admin of redoing a prescription but ultimately I’ve been right.
I think “Self tweaking” under 5mg should be permitted (but you didn’t hear that from me)
The NHS Drug Tariff makes it quite clear that the prices of 10 and 15 are crazily out of step with 5 and 20. (All prices in pennies and for 100 tablets.)
On top of that, supplies of 10 and 15 have been problematic for years. Sometimes available, sometimes not.
I know I saw some very clear advice not to prescribe 10 and 15 dosages but can't immediately find the information. Largely based on price but also, from memory, simplicity.
I just realised we chatted on your previous thread. Sorry I should have checked. It would really help members if you filled in your bio so they don’t have to look back at previous posts. I usually have a very good memory but I am slightly hyper so I am all over the place at the moment. If you ever want to chat please message me because I know what a struggle this horrible disease is
I'm now totally confused as I thought you were already on this low dose of 2.50 every other day - with my suggestion being to try and chop this in half and take a little bit everyday thereby following the body's natural thyroid hormone production -
but which, it seems, was too difficult to do - and that's ok -
Sorry - I seem to have lost this thread - anyway - yes, try that and stay there - for a good couple of weeks - before deciding anything -
Symptoms of hyper and hypo can be so similar - do you monitor your blood pressure, pulse and or body temperature and can spot any subtle changes that way ?
yay hi pennieannie - yeah and then I panicked because people said I should try consistency of something everyday so tried that for about 6 ish weeks I think and then started getting hyper symptoms again humph 😖
But yes I’m now trying 2.5mg two on one off and will stick with it until my appointment in January 😊 unless that is I feel like I’m dying then I have no clue what I’ll do 😂
I get obsessive so I darent start monitoring stuff … ditch my Fitbit because of the obsession (thanks to advise on here) 😊
Lol. You have a great sense of humor despite the situation. The sky fairy bit made me chuckle. I am not very familiar with carbimazole. I know cabbage can mediate some hyper symptoms. Why not try a coleslaw salad and see how you feel? Good luck and thanks for the laugh.
something I do notice along with the usual swelling when I’m taking this medication (just coming up to 18months now) I don’t wee …. Three cups of coffee this morning and not been for a wee since I woke up at 05:00 🤷♀️
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