Graves for 10 years now, successfully managed with Carbimazole, currently 7.5mg daily.
Over the years I've had a couple of hyper events caused by mismanagement of dose, before I discovered private testing. Twice in the past my GP has given me a month's supply of Propranolol to bring my heart rate down during a hyper, and discontinued when things were back under control.
I noticed an unexpected effect! For years now I'd become accustomed to waking up with a headache and sore neck, shoulders & hips, it was 'normal' to pop a couple of paracetamol first thing to get going, and the discomfort never came back during the day. When I was taking Propranolol all the pain & stiffness disappeared, promptly returning when the Propranolol was withdrawn. I did some reading and found Propranolol is also given for anxiety and while I am not aware that I have any anxiety during waking hours, I do have mad dreams involving frantic packing of suitcases knowing I'm not going to get to the airport in time, lost car keys, missing wallet/passport and so forth.
Seems these are classic anxiety dreams so I asked my GP if Propranolol was a long-term prospect as a fix for the overnight anxiety. Happily she agreed and I take 1 x 40mg at night, for about a year now. Not one single morning headache, can't remember the last time I popped a paracetamol. But ... yes, if it seems too good to be true it probably is ...
After discovering private testing early last year I've kept my thyroid levels well under control by monthly testing and very gradual reduction of Carb. Feeling on top of the world last year, before I started long-term Propranolol, things started to go a bit flat over this year and I noticed my FT3 was consistently lower compared to FT4 than it was last year. Up till the turn of the year the ratio was less than 4, now it's around 4.5 and I don't feel as sparky, put on some weight and sleep too much. It also affects my mood, lower FT3 and I am a gloom-merchant, higher FT3 and I wake up with a smile on my face.
So, I've just had my latest test back: TSH suppressed (no surprises there), FT4 23.9 (12-22) FT3 5.1 (3.1-6.8). I'm not on top form but tolerably well, I've noticed over the years I need to be at least mid-point of the FT3 range (4.95) and at my best a bit higher. So it seems I need to have FT4 over the top of the range to achieve the level of FT3 I need. I remember last summer feeling absolutely fantastic with FT3 around 6 and FT4 still in range but right at the top. With my current conversion rate I'd need FT4 of 27 or 28.
I've read in other posts that Propranolol interferes with conversion so I guess this is the culprit in my reduced ability to convert. Reluctant to give it up and go back to daily aches, pains & paracetamol, what do people think about running on higher FT4 to get my FT3 above mid-range so I feel really well? I understand that the risks of hyper are related to metabolic rate, does that depend on FT3 or also on FT4 and will keeping my FT4 high batter my heart & bones, if my FT3 is well in range? Thanks for your patience if you've read this far.
Written by
fairydogmother
To view profiles and participate in discussions please or .
Propranolol does inhibit deiodinase. My view is that higher (normal) levels of fT4 are undesirable as there is evidence T4 promotes cancer and is a cardiac risk. Perhaps you might do well on half a propranolol tablet? Give it a try. Otherwise I would push for a little liothyronine and a reduced levothyroxine dose. This is a reasonable request given the effects of propranolol. You would also be on a lower total hormone dose.
Oh dear, thanks for pointing this out. I need to read more slowly and carefully.
fairydogmother
In that case I would perhaps try a touch more carbimazole and less propranolol. The Graves' antibodies tend to stimulate type-2 deiodinase (D2) academic.oup.com/endo/artic... and propranolol inhibits D1 and D2. So, propranolol is countering some of the effects of Graves'. Altering the doses a little might allow lower overall hormone levels but with better T3 levels. However, it may be that your anxiety is reduced because propranolol reduces T3 (and T4) levels.
A possible warning. Once the Graves' antibodies die down the D2 stimulation of T4 to T3 conversion may reduce also, so you may have to make substantial adjustments to your treatment. In general it is better to try and get your TSH up a little as it will probably lead to a better outcome once the Graves' has died away.
Thank you, intending to up my Carb by a tiny amount from today to keep the T4 controlled. Shame if that pushes my T3 back down again, just starting to feel better with it in mid-range, back from a 2-hour walk in the sunshine with my long-suffering dog who gets much better walks when I feel well 🐾. So I will try a small reduction in Propranolol as well, and hope the overnight aches can be kept at bay. I do know 10mg didn't work as we tried that last year.
Never in 10 years has my TSH come up above 'undetectable' except for the one time I let the endo's overmedicate me into hypo, when I promptly developed TED.
The eye consultant, in whom I had every faith (unlike the endo's) organised a TFT because the NHS refused one as 'too soon'. Test showed my TSH had bounced up to 'normal' while both FT's had dropped out of range, eye consultant said it was 'very important' I should not become hypo and I've made sure it never happened again. One corrective lid surgery was more than enough!
If I do actually have Graves antibodies (considered unnecessary to test) then they haven't shown the slightest sign of dying down in 10 years, I wish they would! I have only ever stopped Carb once, on instruction from endo's who have this mad idea that pushing you into hypo then stopping it will get your TSH up. News: pushing you into hypo certainly gets your TSH up, then stopping the Carb promptly sends you hyper again, so they can tell you there is no alternative left other than thyroid destruction.
Probably does because it's considered important in the treatment of eye disease.
I think at some time in the dim past I tried selenium supplementation and don't remember any empirical result either way. In these 10 years I've tried just about everything, lemon balm, magnesium, Vit D, nothing seems to change anything except fine titration of Carbimazole.
The standard endo treatment of min 2 months between tests and changing dose in increments of min 5mg sent me rollercoastering up & down and I have managed very much better since discovering I can test every month privately, and cut pills to get increments of 2.5mg.
The only regime change that has had a measurable effect is the undesirable change in conversion since I started long-term Propranolol. I like to see hard evidence in numbers and I like risk/benefit analysis too, so it's weighing up the benefits of losing the tension aches against the downside of altering the thyroid conversion rate.
just curious whether bisoprolol never affects thyroid levels….I have plenty of HR, BP, dizziness problems over last 2 years related to Long Covid and put on 5 BP drugs including bisoprol, meanwhile my FT3 has lowered.
From what I've read up to now (which isn't a lot) the tests about thyroid levels were only done with Propranolol so I don't suppose anyone can say for definite whether or not Bisoprolol will affect them. On my original very low dose of Bisoprolol (1.25mg) I had no problems. My dose has been increased twice in recent weeks and is now 3.75mg and I've yet to find out whether taking a bigger dose (although still considered a low dose) has any effect.
Thanks, yes I’ve gone up too this last week. My endo. has not been of much help, suddenly getting concerned about negligible TSH (0.1) and saying FT3 level doesn’t matter. I feel I am back to DIY diagnosis and treatment!
I take propranolol as have migraines without it, although I split it through out day.
I’m quite sensitive to it and if late for a dose start to feel a migrainous headache.
You could try and very gradually & slightly reducing it by taking 30mg for two weeks then 20mg and see if a reduction is sufficient to prevent the headaches but help improves conversion.
Have you checked key nutrients too. Folate, ferritin, B12 & vitamin D.
Most doctors would say your levels should be in range, but then most doctors would want to lower it until your TSH rises.
I’m the same my TSH remains suppressed. Recently I was taking 10 / 5 carbimazole- alternating day but have needed to go to 10mg recently as levels too high.
I feel well with mid range levels but if you know where you feel well you need to work toward that.
Long term propranolol can lower magnesium & that can also affect how well vitamin D works in body and can be a cause of headaches.
I take a 375mg of magnesium citrate powder in a drink before sleep. Helps me sleep & also resolved an eye twitch id had many years.
Thank you all. Very disappointing as I thought I'd found the perfect solution!
I have no headaches at all taking the Propranolol but I do have the concrete evidence of TFT's.
Approaching my GP is a complete waste of time, although she is sympathetic she freely admits she knows nothing about thyroid conversion and will refer me to an endo. The endo's I've seen locally are a complete waste of time, they are not interested in anything apart from thyroid destruction.
Seems I have 2 choices:reduce then wean myself off the Propranolol and see if the aches & pains come back. I think that's going to be a no-brainer, I just woke up from a dream where I was frantically packing as many essential possessions as possible because there was a landmine on the roof of the house, I saw it blow up and the front door cave in, knowing I couldn't get out before the fireball hit me.
If that isn't an anxiety dream then I don't know what is, but hey, no headache!
So the Propranolol doesn't prevent the dreams, it just blocks the adrenaline that causes the tension aches.
Asking my GP for T3 supplementation is also a waste of time so I guess I need a sympathetic endo, and pay privately. jimh111 I still have my thyroid so I don't take any levo, I just take enough Carbimazole to keep my FT's in range. If I take too little my FT's shoot through the roof in a matter of weeks so levo is the last thing I need!
SeasideSusie AFAIK Propranolol is the only beta blocker given for anxiety, but I'll do some reading, thank you
PurpleNails I did try magnesium supplementation a couple of years back, before the Propranolol, and I didn't feel any different. Can't see it in any of my GP's blood counts so I'll find out if I can get a private test.
SlowDragon Only ever had one ferritin test when first diagnosed, it was at the low end of 'normal', so no consideration would be given. I had VitD & calcium tested last year, I take a VitD supplement all year round and came back at the low end of 'optimal', they are happy with that. Can't see I've ever had folate or B12 tested, if I ask they will want to know why and I will get packed off to an endo again. I can't take any more nagging about thyroid destruction.
So you still have your magic wand protecting your thyroid and Graves lurks around in the wings of the Pantomine with Propranolol keeping ' things ' at bay.
I don't know the answer but we do now have some research confirming our thoughts from 3 years ago when we first met up on this forum - though not sure it's been accepted and followed through as best practice in hospital settings as I still read of patients being told RAI is the only option and AT drugs too dangerous to stay on long term
I do know however that non optimal levels on ferritin, folate, B12 and vitamin D have a direct influence on my health and well being and would suggest you get these tests run and post the results and ranges back up on here if wanting advice.
If you go into Thyroid UK - the charity who supports this forum - thyroiuk.org there is a whole section dedicated to private blood companies who run the blood test some doctors seem unable to action.
Oh I just love the idea of Propranolol keeping 'things' at bay! the landmine on the roof is a new one, but the frantic packing is very familiar. 40 years of meeting work deadlines with total inflexibility from HMRC doubtless has a lot to do with that. I'd love to address the psychology side but no idea where to start. NHS is overwhelmed with physical medical issues and can't be expected to pay for delving into the fevered mind of an ancient crone like me, and private psychotherapy is a minefield. HAH!!! you see??? MINEFIELD .... the neuron pathways are still on the defensive even though I'm awake ... 😂 I will read the paper in your link when we've dried out after our morning walk.
For the mind side of things yYou could try Irene Lyon's videos on YouTube or dr Kim d'Eramo's and a good book to read is dr John Sarno's The Divided Mind.
Thank you, I am a big believer in what the mind can do. I guess my night-time subconscious activity is very deep-seated, I was brought up to consider everything as a potential risk and be very defensive. 70 years of living has shown me most of what I was trained to fear isn't actually a threat, but the fears must still be chuntering around somewhere. Beware of land-mines on your roof! 😂
I always remind myself of Dr, Andrew Weil’s advice to stop watching the news and buy yourself flowers. Might not help the dreams but does add to my serenity.
On another note - I’ve often wondered for Graves, at a point of needing to choose between RAI or total thyroidectomy, which would you choose. As someone who had TT for cancer, I can’t imagine trying to balance thyroid hormones with a partially functioning thyroid without the ability for frequent testing. And RAI has a few serious side effects for some - it’s not a benign treatment.
I am sorry you had to have TT but with cancer I don't think there's any choice. It's one reason I would have my thyroid removed, the others are if the meds stop working or if my liver does rebel and no longer tolerates them. Otherwise, no way. In the event of having to choose I would not have RAI. I don't think enough work has been done on the long-term exposure to radiation.
Fully agree with the advice on flowers! And love your username, had my own Connemara mare for 25 years, barely more than a pony and total pony character. Loved her to bits and she gave me some of the best memories I could ask for. Strange that I never dream about her. Another frequent dream is my dog running around in traffic and refusing to recall. Guess my worst fear surfacing.
The best advice I can give you is get rid of the propranolol. I was on it for 2 years for anxiety. It took me quite a while to get off it and I was only on 10mg. I just cut the tablets in half and then quarters then I finally stopped been off them for 8 months now. High dose B1 was the best thing I did. It cures a multitude of things. It stopped my nightmares. Helped my heart rate and my sleep apnoea even my fluid retention. I started on 100mg of thiamine HCL, now on 200 and magnesium glycinate. Last year I took 1000mg of Ester C and 500mg of B5 that did miracles for anxiety. I'm even off all thyroid medication, have been off it since April too. I've been feeling so much better and now weight is coming off slowly.
I tried every type of thyroid medication combination for underactive thyroid for 5 years and they all affected me badly. Made my anxiety worse and heart palpitations. I was on Armour for 4 months before I quit completely.
OK thanks, I think our underlying conditions are very different, I was diagnosed raging overactive 10 years ago and the meds I take are suppressive rather than supplementary. Cut my meds too low and I go back into hyper-orbit! I have no measurable or discernible side-effects from the anti-thyroid drugs, just keep them to a minimum to decrease the load on my liver. Good to hear you've managed to get by without your supplementation.
Although I think my 'anxiety' is made worse when I go hyper I think its source is not thyroid-dependent. Nobody ever said I had anxiety, just my interpretation of my loony dreams. In my waking hours I'm (more or less) rational, but I am fed up of waking up with tension pains in my head, neck, shoulders, spine & hips.
I don't like taking paracetamol on a daily basis but without the propranolol, I can't function until a whack of paracetamol first thing has shut the pain down, then it never comes back until the next morning. With the Propranolol it never comes at all, which feels better to me.
I never asked my GP about the morning discomfort before I made the connection with the loony dreams, I think I would have got fobbed off with 'what do you expect at your age, probably arthritis' (not!). Didn't want to be pumped full of horrible, unnecessary anti-inflammatories.
Try the B1 it really works. I was the same with pain that has gone now too. They even say B1 cures fibromyalgia. Lots of very interesting videos on it xx
Thanks, will do. Any idea how it works? This is not inflammatory pain like fibro and the odd thing is that the Propranolol doesn't stop the dreams. Last night was the good old familiar 'exam dream', you know the one, exam paper in front of you, haven't done any work, don't know any answers, time running out ... 😂
So the anxiety triggers are still there but the tension response that causes the muscle pain isn't. Too complicated for me, give me an argument with HMRC any day, I win those!
I was told propranolol can make dreams worse. 100mg HCL worked almost instantly for me. B1 controls the nervous system and calms everything down. My nervous system used to be over active. the tension pain from stress too. Perhaps you have low cortisol? That can cause body pain. Vitamin c and b5 helped me with that. The other thing that has helped me is mushroom complex.
Thanks again, the dreams are definitely not worse. They aren't nightmares as such, more of a 'how to solve it' situation. All my working life (40 years) I was up against deadlines and solving problems, I guess it's become engraved on my subconscious. SlowDragon suggested a 'cortisol imbalance' but didn't say which way, low or high, it's on my list for checking. I'm presently improving my iron intake with liver/steak weekly (not exactly a hardship!) prior to having an iron panel test as that was also recommended to improve cortisol levels. The trouble with starting so many different supplements is that you don't know which one does what if anything does change so I'm going one at a time. My pain has never been connected with anything other than waking up and without the Propranolol it happened every single day. I have the odd injury from overdoing gardening, know how to mend those, and the overnight pain never comes back during the day regardless of whether I'm on a day-hike with the dog, digging out a new veg bed or lying on a sunlounger next to a pool. I have a really lovely life since I retired, with time to do the things that matter to me, just want to carry on enjoying them for the years I have left so thank you for your list of ideas, I'll work through them. Stay well! x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Poor T3 conversion
Success! Folate supplement has finally increased my T4 to T3 conversion!
T4 conversion to t3 question
T4-T3 Conversion Issues
T4 to T3 conversion issue
