I am hoping you clever people wouldnt mind kindly give me some advice on managing the consequences of being on cardivilol for three years. I did query taking it several times with consultants & GP as I had once been given propranolol years ago which caused my thyroid horomones not to be fully converted making me exceedingly ill. I was assured that cardvilol doesnt do this. Wrong! As the dose has gone up I have become increasingly bone tired, constant crashing, dry skin, weight gain and feeling exhausted all the time.
Am under cardiologist as cancer treatment messed with the wiring in my heart hence the beta blocker being prescribed to slow my heart rate which is not caused by over treatment for hypothyroidism, but misfiring of signals in the heart. I was on cardivilol for three years but in the end became really ill. It was my Pharmacist eho flagged up concerns for me being on a beta blocker. Blees the pharmacist.
I am now off the beta blocker (nearly three weeks) but feeling very jittery. Tiredenss has gone. During these three weeks I have taken myself of my ndt for several days at a time but everytime I restart the same jitteryness returns and I tremble. Blood test results show too high T3, Currently am off my meds yet again for two more days and the jitteriness trembling has settled again but I dont know how long to stop taking my meds for. Any suggestions would be gratefully received.
Results of blood tests, taken three days ago by nhs:-
TSH 0.02 (0.27-4.2). Normal for me as alway this on my ndt
Ft4. 21.1 (12-22) a little higher than usual usually around 19
Ft3. 7.3 (3.1- 6.8) too high!
My understanding after researching myself is that ALL beta blockers lower T4-T3 conversion converting to Rt3 which is unusable. I was told by an endocrinologist when this happened before that once off the beta blocker the Rt3 would then convert into T3 so advised I stopped thyroid meds for a week. I have followed this protocol but only for three days at a time.
The cardiologist has put me on a calcium channel blocker instead & assured me that this will not interfere with my thyroid hormones. I hope he's right!! Sigh....
Many thanks for reading this & in advance of any suggestions...
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My understanding after researching myself is that ALL beta blockers lower T4-T3 conversion converting to Rt3 which is unusable. I was told by an endocrinologist when this happened before that once off the beta blocker the Rt3 would then convert into T3
Dear lord, what do they learn in med school these days! No, rT3 cannot convert to T3. But, once off the beta blocker less T4 will convert to rT3 and more to T3.
I believe there's quite a bit of controversy over whether or not all beta blockers have this effect, or if it's just certain ones. All I know is that I'm pretty ill on any beta blocker and now refuse to take them. However, if the beta blocker had been affecting your conversion, one would expect your FT3 to be lower, not higher. So, not convinced this has anything to do with the BB. Unless, of course, you continued increasing your NDT during the time you were taking the Beta Blocker, and now you've stopped it, you find yourself over-medicated.
Oh right thanks Greygoose. It was Dr Skinner who told me that. Not the rt3 -that is probably my misunderstanding. He just said the backstacked thyroid hormones would convert and to stop my thyroid meds for a few days.
I have been taking my thyroid meds after stopping my beta blockers but not all the time.
Am with you with on this one & have refused to try any more beta blockers!!. Yes there is some dispute over how much beta blockers do this but they all do to some degree......and my suspicion is the higher the dose the greater the impact. So I have had three years of this........but my Ft4 has always been in range.....and of course the nhs doesnt always do the ft3......but they did do it early on in my use of beta blockers amd that was in range. Why my ft3 is so high now I dont know nor understand but can only assume its because something additional has gone one. Ive been on the same dose of ndt for about 10yrs.....& my ft3 has never been that high....once it tipped just over range so I reduced the ndt dose.
From what youve said it sounds like once the ft3 level has dropped I need to resume at a much lower dose. This has been what Ive been doing. Id read on stopthethyroidmadness that 1 1/2 grains of ndt is what they recommend to help clear thr rt3. However of course I dont know how high mine is. No info on how long it takes to clear either.....
From what youve said it sounds like once the ft3 level has dropped I need to resume at a much lower dose. This has been what Ive been doing.
No, I didn't say that. I merely asked if you'd been increasing the NDT to compensate for the effect of the Beta Blockers. How long have you been of the BBs? It could be that your high level has nothing to do with them.
Id read on stopthethyroidmadness that 1 1/2 grains of ndt is what they recommend to help clear thr rt3.
No, that's pure rubbish. If your high rT3 was due to taking Beta Blockers, it has nothing to do with your dose of NDT. You would only reduce your level of NDT if your FT4 was very high. STTM are completely wrong when they tout T3 as a 'cure' for high rT3. It isn't. And there's no need for you to worry if it's high, anyway. STTM are still claiming that rT3 blocks T3 receptors and makes you more hypo. It doesn't. It has its own receptors. It doesn't do you any harm. So, just forget it.
Had a horrid night woke with sense of heart racing..... but its now settling at 79.per min. Temp 36.6C first thing. Am pleased at the drop in heart rate after no thyroid meds for two days.
Ive never tested positive for Hashi. However the dose of thyroid meds Ive had to take for well over 12 years now must mean my thyroid is totaly dead as its a full replacement dose. On ndt its been between 3 3/4 & 4grains or a max of 152 mcg T4 & 36mcg T3. Ive been very stable on that dose for years, allowing for a litte more in winter, little less in summer when hot.
The only difference in the last 18months is that Ive been on regular b12 jabs for neurological symptoms although B12 showed low but in range at 275. The B12 jabs have made a massive difference to these symptoms which have vastly improved, many gone -left with mild tremor in one arm & legs.
Am wondering would the B12 increase my uptake so I need less ndt? Hence the high levels of thyroid hormones......or is this all still the effects of withdrawal from long term beta blocker use. Flippin nightmare figuring out! I will have to retest in a while I know to find out.
My plan was to reintroduce the ndt (Acella NP) back tomorrow but at a lower dose 3 1/4 grains.
I was always told to reduce by a 1/4 if I felt jittery when I was on NDT but you can always increase your dose again if you feel it is too low for you. My T4 is at the top of the range at 22 but my T3 is ok so I don't feel like my heart is racing. I have had a terrible night because I made the mistake of having a coffee at my relatives last night. I have been suffering with palpitations and have felt hot. I think the caffeine is nearly out of my system now because I have just taken my blood pressure and it is normal. I won't be drinking coffee late at night again. Just to add I am not on any medication at the moment but I may have to take it NDT again in the future. I do miss Dr Skinner he was so knowledgeable and also a very nice kind man.
Awww poor you. I cant tolrate caffeine at all these days so you have all my sympathy.
Yes really miss Dr Skinner.....lovely clever man - can almost hear him telling me to hold still & not take my thyroid meds, with a twinkle in his eyes, tutting that the docs put me on a beta blocker after the last disaster! 😜
Ive never tested positive for Hashi. However the dose of thyroid meds Ive had to take for well over 12 years now must mean my thyroid is totaly dead as its a full replacement dose.
Very difficult to say what a 'full replacement dose' is. Obviously it would vary from person to person, and would depend very much on absorption - both at a gut and at a cellular level. It's nonsense trying to standardise doses like that. We need what we need.
I don't think B12 shots increase absorption, but you never know.
Might be a good idea to restart NDT at a slightly lower dose, as you've been off it for a while. You can always adjust from there.
Thanks Greygoose. Thyroid Uk used to say we need B12 for conversion of thyroid hormones but that page has been updated & it no longer says that.....hence my query over whether b12 shots would have faciltated grester uptake so may need a lower dose.
Ive only been off ndt for short periods - three days will have been the longest. But will ease myself back in.
I agree no point standardising doses too many variables. However I very much doubt my thyroid produces much if anything at the dose I need.
My hypothyroidism & B12 deficiency all stem from having developed universal vitiligo which in my case is inherited as have several family members with vitiligo though it appears I have it in its more extreme form.
By 'uptake', I take it you mean absorption in the gut - which of course would affect the level of T3 in your blood - but I don't think B12 has any effect on that. I'm not sure whether or not it helps conversion, possibly not. But, even if it did, it would make that much difference.
There's no way of knowing how much is absorbed at a cellular level, but if the T3 wasn't getting into the cells, then that would cause the level to rise in the blood. And, the only thing I know that would affect that is soya. Do you consume a lot of soya?
I don't know about the connection between vitiligo and hypothyroidism/B12 deficiency. Who told you there was one? Vitiligo is an autoimmune condition, so it would make sense if you had Hashi's and Pernicious Anemia.
Did you stop the BB very very slowly as withdrawal can cause lots of symptoms and go on for a long time.
I was on Bisoprolol for several years and didn't have any problems other than it made me tired. I'm on it again for similar heart issues you have, I now have a pacemaker for bradycardia and I take Bisoprolol to control tachycardia and ectopics. Beta blockers are the best medication to control this type of problem, Calcium Chanel blockers don't work so well, it's a dilemma when we need to take these meds but have to balance the possible side effects. I take my BB about an hour before my Levo and so far I haven't had any problems 🤞
I hope you get on ok with the CCBs, I will be interested to hear your updates.
Thanks Bantam. What happened was the consultant cardiologist switched me from cardivilol as I felt terrible on it -they had been gradually increasing the dose - he said it wasnt working anymore so he put me on Bisoperal. I only took one tablet of Bisoperal & had a really bad reaction to it. - racing heart, breathless & felt sick -quite scary at the time as to be honest it felt like I was dying for a while. So was then switched to a calcium channel blocker called Veraptomil which Ive now been on over two weeks, currently 80mg.
Am down to see the elctrophysiologist in just over a month....so hoping they can sort me out. I feel better on the calcium channel blocker than the beta blocker - the bone grinding fatigue/weakness has gone. Id been blaming that symptom on consequence of cancer treatment......lol. So thats a plus! 😊
I had Verapamil but it doesn't work as well on controlling the electrical misfiring. I am only taking the lowest dose of 1. 25 of Bisoprolol at night and after initial feelings of being wiped out when I was taking it in the morning I'm now doing ok with a heartrate around 60bpm.
If your EP offers you an ablation which they are very keen on doing ! think very hard before agreeing, for me the cons far outweighed the pros so I went for pace and block instead.
60 is amazing. Mine was in the high 90s low 100s on 25mg Cardivilol twice daily. I felt shocking. Now its in the 70s on the verapramil although no ndt for third day I feel better. I do get get heart races (p-afib Im told) which are unpleasent but they occurred on the beta blocker too.
These elctrical issues are common consequence of cancer treatment so am interested in the abalation. Ive read its 86% sucess rate after two rounds. So what are the cons?
I was booked for an ablation but my issues with it were the actual low success rate, need for further ablations, increase in symptoms plus new ones that many suffer with and potentially long recovery, can take a year for scar tissue to form so symptons persist. It's not a treatment to cure the Afib it's a quality of life treatment and for many it doesn't help, my Cardiologist agreed !
I have PAF, 2nd degree heart block and microvascular angina so a pacemaker and meds were my best option, it's early days as I only had it implanted 2 weeks ago but so far I'm doing better, rate down from 90s and 100s to low 60s and mostly without the awful pauses the Afib was giving me.
Thanks Bantam. Thats really interesting thankyou for sharing. The stats Ive read had excellant outcomes but admitted it could take two attempts. Guess it has to be looked at with reference to the individual patient and their situation. Its good your cardiologist talked it through with you to weigh up best way forward and you clearly had a good handle on it.
I dont know if it will be suitable for me either to be honest as mines all insult from treatment & of course I dont know if the effects will continue to cause ongoing damage. I do know getting of the beta blockers has helped enormously and now the mini thyroid storm is passing my heart rate is now in the top 70s which is brilliant! We are all so different. Unfortunately the episodes of Afib are ongoing & have woken me for large parts of the last two nights. I did try sleeping on a wedge -didnt really help. Best to sit up Ive found.
Sounds like you have had a good result. Must be great to have the heart rate down in the 60s and to have those horrid p-afib episodes greatly reduced. Wishing you ongoing wellness.
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