Hi all, I was wondering if any of you think my medication was reduced to quickly.
I was taking 20mg carbimazole twice daily and 40mg propranolol three times daily.
I had been taking these for 11 weeks, then when I saw the endocrinologist he told me to only take one 20mg carbimazole in the morning and drop the 20mg night dose. He also told me to stop the midday 40mg propranolol and after a week to stop taking the night time 40mg propranolol.
I was supposed to stop taking the morning propranolol today but I'm honestly scared to stop it as I don't want to feel as awful as I did after the initial reductions.
I will also add that these reductions were made before I'd had any bloods done. (I have been for bloods since and will be having follow ups done on the 19th)
Does anyone have any knowledge on how these two medications should be reduced? I felt awful to say the least. Is this just how it is? Should the Dr have waited for my bloods before making adjustments? Thanks H x
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Pheobebuffay
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No, no bloods. Had blood test initially which showed I had an over active thyroid. One night in hospital then discharged the next day with a prescription. Received an appointment to see the endocrinologist and now here I am x
It would depend on your levels when you were diagnosed and how you have responded to carbimazole. Most importantly what your current levels are.
What is your recent TSH, FT4, FT3?
Also very important to have your antibodies and key nutrient tested. Were these done?
I started on 20mg carbimazole and after 10 weeks it was halved. Ever since I have had 6 weekly adjustments between 10/15mg. I Personally found reducing quickly resulted in me feeling more symptoms than when it was done gradually.
I did find reducing propranolol very problematic. I wasn’t advised to wean down very slowly, and stopping it abruptly triggered awful migraines. I have been back on it ever since on a lower dose. If I miss a dose I get a migraine. Still trying to very slowly starting to reduce it.
Propranolol does has a mild anti thyroid affect and the month I stopped it my FT3 spiked disproportionately.
Edit: extra comments: Propranolol is usually intended to be temporary, relieving the symptoms only whereas carbimazole will treat the cause (by reducing production on new hormone. Not existing hormones). You should be able to reduce propranolol, but possibly slower than you has been suggested. What symptoms are you experiencing?
I’d say your doctors are only guessing your level have been successfully lowered. Your levels could still be too high and then lowering the dose would be wrong. Equally if the hyperthyroidism was a transient anomaly your levels could now be extremely low. In which case you could still be taking too high a dose. Dosing you without reviewing your FT4 & FT3 is levels is a total disservice.
Well, yes, I too would have thought you would have needed a blood test before the new dose arrangements were decided.
Have you had the medical evidence of Graves Disease and have a positive blood test result for either of the following : TSI ( roughly translated as stimulating ) and / or TR- ab ( roughly translated as a blocking ) antibodies.
Do you have any blood tests that you can share with us as without any medical evidence there's not a lot of reasoned logic to offer.
I have Graves and was put on Carbimazole but this was back in 2003 and I can't remember the numbers, and sadly didn't ask question being total compliant believing the doctor knew best.
It will be in your best interests to get copies of all your blood tests and detail how you feel throughout this phase of the disease, as the endo adjusts your anti thyroid medication down, as your own hormones come back down into range.
There is actually more than one reason why you can become " over active " and it's most important that you pursue the antibody blood test result as detailed above. Hashimoto's Disease also initially presents with a " hyper " phase but is transient and is not treated with any anti thyroid medication so please ensure that you do actually have Graves Disease.
The NHS tend to give a 15-18 month window for treatment with the AT drugs. These block your own thyroid hormone production with the idea being that during this period your antibodies will reduce, the attack on your thyroid reduce, and your reliance on the AT drugs reduce accordingly as your thyroid hormones come back into range and support you as before.
The NHS do not seem to pay too much attention to these antibodies once tested for the diagnosis as they do not know how to control or reduce them but I think it absolutely pointless to stop any treatments within the set time span if antibodies are raging as you'll not succeed in finding remission whilst in this condition.
This area is something you can help yourself with and you may need to learn and consider lifestyle and diet choices, relaxation techniques and take time to learn why this has happened to you and what you can do yourself to calm down your immune system and thereby reduce the antibodies attacking you.
Graves is an auto immune disease and said to be stress and anxiety driven, and it can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one. There is probably some genetic predisposition maybe a generation away from you, where someone had/ has a thyroid disease.
Your body clock has been running very fast and now it may have slowed down too much. It is essential that you keep your core strength strong and solid so would suggest you arrange for ferritin, folate, B12 and vitamin D to be tested and post the results and ranges of any blood tests back on here for considered opinion.
You might like to dip into the Elaine Moore Graves Disease Foundation website as it is the most all encompassing well rounded information base I have found for Graves which does seem to be a poorly understood and badly treated auto immune disease.
Just remember your thyroid is the victim in all this and not the cause :
The cause is your immune system attacking your thyroid :
The thyroid is such a major gland and responsible for full body synchronisation, including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism, so your symptoms can be as diverse as eating for 5 and loosing weight, wired but tired but and with insomnia, physically exhausted, mentally frazzled, and with sore dry gritty eyes, headaches and emotionally totally all over the place.
You really need blood tests to see where your levels are before you make reductions. Also with Propranolol you need to wean yourself off it slowly. I decided against taking it because I knew that it was addictive having worked in a hospital pharmacy. Having said that you must have needed to take it. I would request your Endo does blood tests and then post them on here so members can advise you. You are entitled to see all your results because it is the law so don't let your doctor tell you otherwise.
Good to see an endocrinologist using common sense and not dominated by blood tests. Carbimazole is started on a high dose and then reduced. Propranolol reduces your T4 to T3 conversion. I assume they asked how you were doing and checked your pulse which would give a good idea of how you are progressing. They can fine tune when they have the blood test results. You can gradually titrate down the propranolol if you like.
My husband ended up in hospital because he was taking too much propranolol .. it is a very powerful drug that can make your heart beat too low. Sorry but I feel very strongly about this drug.
Maybe the doctor noticed a slow pulse and that is why they said to discontinue it. Speculation but I hope they did basic checks like pulse, more important than blood tests.
He was given it for anxiety and the GP didn't take into account he has a slow heart rate because he used to be a long distance runner. He actually collapsed and it was very alarming at the time. This was about 10 years ago and he hasn't taken it since.
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