Hello All, this is my first post. Even though I haven't written anything up until now I have found very important info from the forum. I was originally diagnosed with Hyperthyroid mid July 2022. My Free T4 reading was 59.5 /T3 reading of 27.6 with a resting heart beats per minute of 122. I was was prescribed 20mg Carbrimazole 3 times a day, and 20 mgs of propanalol 3 times day. Today 11 September after recent blood tests last week, I saw my endocrinologist for the time. Due to my Free T4 reading of 17.6 and T3 reading of 6.5 ( sadly I forgot to ask about TSH due to the rapid fire consultation technique of the consultation) I have been told to Half my dosage of Carbrimazole to 20 mgs per day, and also take only 10 mgs of propranalol for the next week before stopping them altogether. Scheduled for regular bloodtests to monitor things. My consultant was quite dismissive about dietary advice, lifestyle choices. That really put me off. The Only side effect I have either caused by the tablets or condition is dry eyes. Can you please give me some thoughts ref "totally coming off Propranalol" after a week of halving the dosage and I have also decided to increase my selenium intake to safe levels. I have quit drinking coffee for over 2 months now to hopefully mitigate resting heart beat rate. Any thoughts or guidance is very much appreciated.
THanks very much
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Bayoubilly
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Do you have there your original TSH, T3 and T4 results and ranges at diagnosis and also confirmation of which antibodies were found positive and over range at diagnosis ?
What have you been diagnosed with ?
Do you have the ranges for the current T3 and T4 results please - guessing you are back in range -
The TSH may stay low/ suppressed. and never fully recover and why you must now be dosed and monitored on T3 and T4 blood test results.
The Carbimazole is an Anti Thyroid drug and simple blocks your own daily natural thyroid hormone production - and a bit like being an aeroplane waiting for a landing slot, the AT drug puts you in a holding position while we wait for your immune system response to calm down.
Quite why you immune system decided to ' take off ' when it did is the 64 million $ question - and you probably best placed to try and understand why and what sent your immune system haywire.
Propranolol is a beta blocker and tends to reduce the rate at which the T4 converts to T3 - as it is too high a T3 that causes all the symptoms of hyperthyroidism.
I never needed to take a beta blocker but understand from what I 've read you need to come of this drug very slowly - I'm sure some else will come along in a while who has had experience o this and advise accordingly.
As for your eyes, i too had issues, this is common and suggest that you just make sure any ointment or drops you use are all Preservative Free even those prescribed by the NHS.
Are either of your eyes swollen- is there double vision ?
I am presuming you have Graves Disease which is an auto immune disease - for which there is no known cure - elaine-moore.com -
If your antibodies are still over range and positive it is absolutely pointless coming off all the medication as remission will not achieved -
So have your antibodies been retested and why your consultant has made the decision to stop all medications ? .
We do now have some research papers you might like to read and copy :-
This first one suggests the longer the patients stays on the AT drug the better the longer term outcome for the patient ;
This second research papers talks of QOL post RAI thyroid ablation which is generally the first treatment offered if you fail to find ' remission ' - coming off all AT drugs and Beta blockers -
Considering your eyes already have issues - RAI is not recommended as this treatment, amongst other things, can exacerbate eye issues.
You might like to contact the Thyroid Eye Disease Charitable Trust - wwwtedct.org.uk -
as they can signpost you to specialist outlier eye clinics, generally attached to large teaching hospital throughout the country where an endocrinologist and an Graves Ophthalmologist work together in this specialist field.
If you just want an immediate reply about coming off the Beta blocker - suggest you start a new post with a simple one liner question simply asking :-
Hello pennyannie, I havent been told to come off all medications. I was told to reduce my Cabrimazole to 20 mgs a day (from 40) and also to reduce my beta blockers from 60mg a day to 30 mg a day for a week and then cease taking them. ( he seemed to be a bit vague on that I must add). My original diagnosis was Free T4 59.5 and TSH <0.1 T3 of 27.6
My last reading (bloods take last week) Free T4 17.6 and T3 of 6.5. I forgot to get the TSH reading as my consultant was speaking soooo fast I couldnt think straight. There was no mention of antibodies. I have access to my records on line, so I will investigate. I am scheduled to take the 20mg Cabrimazole for the foreseable future taking a blood test every 8 weeks. I was prescribed Propanalol due to my high resting heart rate of 122 beats per minute at initial diagnosis. Is the antibody test a separate test?
Ah ok - I took it to read the consultant wanted you to stop taking the Carbimazole as well as the beta blocker - sorry.
Yes it is of vital importance that you know your diagnosis and the medical proof of which antibodies in your blood have caused your ill health and why these drugs have been prescribed.
For Graves Disease you are looking for positive and over range reading of TR ab -
commonly written as something like Thyrotropin Receptor antibody -
with subsets of both stimulating TSI - or blocking TRab - antibodies which vie for control of your thyroid - and sometimes can burn each other out - with you feeling relatively normal during first phase of this AI disease progresses.
The Elaine Moore website as previously detailed has sections on life style and diet should you wish to dip in.
Ok Thanks very much for the info. I understand. My TRAB (antibody test) will be scheduled in 8 weeks time. I will definitely be more well informed the next time I interface with the doctors. The help and insight provided in this forum is very important. I will really get into the Elaine Moore site as yo have suggested. You know in the early days, it is just sooo much to get your head around.
I'm sorryy Pennyannie, forgot to say thank for your initial response. I appreciate you coming back to me. I also just found out that I have NOT had by antibody test yet. I have only had two Thyrdid function Tests. The Antibody TRAB test is due in 8 weeks time.
just keep us in the loop and ask questions as Graves is a poorly understood and badly treated AI disease for which mainstream medical have no real answers and so tend to be dismissive and not encourage questions and in my experience I was told to just collect some leaflets on the subject from hospital phamacy.
A note about propranolol - propranolol is often intended to be temporary as it helps symptoms but doesn’t treat cause.
Propranolol is known to have a very mild anti thyroid affect and can lower FT3 so helpful when hyperthyroid. Long term propranolol use can affect magnesium, so consider a supplement.
My specialist told me to stop taking my 40mgX3 daily dose once I was in range. However it should ALWAYS be reduced slowly when you don’t need it anymore.
For 60mg to 30mg for 1 week, to 0mg MAY be too fast, others are not affected by propranolol dose alterations.
I had migraines which became severe when I stopped. Or you may find the 30mg reduction ok but reducing lower dose causes symptoms.
If you have headache or fast heart rate symptoms you may need to slow the reduction.
I reduced by 10mg daily a weekly, so over months reduced to low dose but never stopped completely, Doctor said to stay on it in my case as a migraine preventer.
A note about coffee - coffee doesn't always cause heart rate problems!
Mine is high most of the time. And if I check it before, during, and for a while after drinking something like a double espresso, which I do most mornings, it often goes down.
I'm only saying this so that you don't fall into the trap of assuming coffee is an issue for you. It might be. It might not be. But if you enjoy your coffee, as I do, do try to check and see what happens.
whooaa, great insight thanks. I think you have pinpointed something. Thanks humanbeans. Gotta do some futher research but the low iron/ferritin really would address some other underlying issues. thanks so much!.
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