Waking up with fast heartbeat - no Cortisol

[NursePeggy]

I am waking up most mornings with a rapid heartbeat. It takes me about 20 minutes to calm myself down. I had a 24 hour Cortisol etc urine and saliva test with a functional GP in March/April which showed that I have absolutely no cortisol for the whole 24 hours. She says I am flatlining. I often can remember a vivid dream before I wake up.

I have had PMR since September 2014 and am on 7.5 mg Pred. I have been down to 6 mg for a few months but the fatigue was dreadful. I also have had Fibromyalgia since the 1980's. I am 77.

Can anyone relate to the lack of Cortisol and waking up with rapid heartbeat ? It is beginning to get me down and I need reassurance.

Forgot to say I also have Histamine Intolerance - not sure if it could be related to that.

[Maisie1958]

Hi NursePeggy no advice sorry but I’ve had episodes when I’ve presumed my adrenals were struggling, no tests to prove it though. I certainly felt very light headed when getting up out of bed and heart rate accordingly went up and I seemed to get rapid heart rates randomly when just walking around that time. I also felt “on edge” all the time, fortunately things settled again. I do think it would be worth having another check up with your GP to make sure nothing else is going on? Adrenal problems seem to cause a whole range of symptoms-maybe even low blood glucose? I’m not sure at what level of Prednisolone adrenals start to function more efficiently but you still seem on a high enough dose to suppress them? Sorry you are feeling so bad, hope things improve soon x

[NursePeggy in reply to Maisie1958]

Thanks for your reply Maisie. I have seen two docs and an Endocrinologist who all said that 7.5 mg is enough Pred to cover my lack of Cortisol. None of them seem to know what is causing me to wake up with a rapid heartbeat. One of them suggested anxiety. It used to happen when I first started on Pred 8 years ago. I would wake up several times in the night after nightmares and vividdreams, so I was given Zopiclone to help me sleep through. That helped tremendously, but it has started again now. I wondered if it is to do with my lack of Cortisol and if anyone else was experiencing the same thing. Thank you for your kind thoughts.

[Karenjaninaz in reply to NursePeggy]

I make Mg glycinate and that took care of my palpitations ; prednisone depletes magnesium. I discussed this with my cardiologist. I take 150-300 mg

[NursePeggy in reply to Karenjaninaz]

I take Magnesium Taurate. I think both Taurate and Glycinate are similar in their crossing the blood brain barrier and helping anxiety, nerves etc. it has also helped with ectopics.

[fmkkm]

Hi Peggy,That sounds pretty scary! If the Doc said you are flatlining what is her treatment plan?

[NursePeggy in reply to fmkkm]

She didnt seem too concerned and said that I was covered by the 7.5 mg of Pred. I hope she is right. I am hoping to speak to her again this week. I must admit that it does worry me. I had a TIA in March so had all the checks on my heart then.

[DorsetLady PMRGCAuk volunteer in reply to NursePeggy]

Maybe have a read of this link re adrenals - healthunlocked.com/pmrgcauk...

[NursePeggy in reply to DorsetLady]

Thanks DorsetLady, I have saved it !

[tangocharlie]

Could also be sleep apnoea - I have it - you wake up in a panic as you stop breathing. I wore a sleep monitor overnight to dx it

[NursePeggy in reply to tangocharlie]

I just lost my reply to you, think I clicked the x by mistake !

I hadnt thought of sleep apnoea - I will suggest it to the doc. I sometimes wake up with a gasp but I have put that down to the vivid dreams. Do you

Have a rapid heartbeat when you wake up ?

I thought it might be due to the Histamine Intolerance, as it is Histamine that helps to wake us up from sleep. Thank you Tangocharlie - I will let you know what the doc says.

[tangocharlie in reply to NursePeggy]

Yes you do wake up breathless and panting as though you've just had a bad dream like being chased. I also have histamine intolerance or something on those lines, possibly MCAS, but still trying to get a proper diagnosis. it may well be connected as my airways are tight if I'm not on enough steroids (to control the PMR) - the apnea came to light when I was on a low dose of Pred. In fact it was my rheumatolgist who suggested it, GP didn't think of it but was happy to refer me to the Sleep clinic

[PMRpro Ambassador]

Of course you don't have any cortisol being produced - the dose you are on is about the amount the body requires to function and that signals to the body (via the HPA axis, hypothalamus, pituitary, adrenal glands and the substances they produce) that no more corticosteroid is required. The reason you felt so fatigued at 6mg is the same - it takes time for the entire feedback set-up to get into balance and trigger the production of a top-up amount of cortisol to what you need. That is why you need to reduce in small steps and slowly to give things time. In the meantime - the pred dose is the equivalent of replacement therapy for the cortisol, the body doesn't care what sort it is as long as it is a corticosteroid.

Adrenal insufficiency can cause tachycardia. Have you had a multi-day cardiac recording deveice? There are a couple of different sorts but they must be in use when the palpitations occur or they tell you nothing. I have an arrythmia and it tends to happen at a similar time each day - I gather from my cardiologist that people do have times when they are more likely to have an episode.

[NursePeggy in reply to PMRpro]

I reduced to 6 mg very slowly and was on it for several months, but I just couldnt cope with the fatigue, nausea etc. So the rheumatologist (Rod Hughes) advised me to go back on 7.5 mg for a while, then try again very slowly to go down to 7. It doesnt help that I have also had Fibromyalgia as well since the 1980's. I know that Pred does nothing for Fibro.

After my TIA in March I had a 5 day ECG, 24 hour blood pressure, Ultrasound, Echo and one other which I cant remember ! I have had SVT's for over 20 years, stopped with the aid of my vagus nerve and some ice ! My heartrate goes up to 200 beats which can be quite scary, but I have learned how to deal with them.

I did have my first proper Afib last week when I was very stressed one morning. It lasted about 20 minutes. So I have a second betablocker now.

I didnt know that they tend to happen at a similar time each day, thats very interesting. The cardiologist has not mentioned that to me.

So the Adrenal Insufficiency could be causing my rapid heartbeat in the mornings ?

[PMRpro Ambassador in reply to NursePeggy]

Strangely mine will be at a similar time day after day for a few weeks and then I have a period without any but when they restart, it can be a different time!!

I have had a lot in the late afernoon, early evening which is really unhelpful when it comes to cooking tea!! Easier now since I couldn't care when I eat - OH wasn't so laid back, if it was 7.30pm it was dinner time!! Latterly he had decided his main meal should be 12 midday and his evening meal just before 6pm, both times I'm not really hungry!! And he expected 2 cooked 3 course meals like he'd been given inthe palliative unit in the regional hospital which is very Italian, unlike here! Now if I don't want to cook - I don't! Luckily I love salads, summer and winter ...

The other favoured time for a long time was soon after midnight - which of course woke me up and was awake for ages. According to the cardiologist they were more frequent than I registered - she can see them on the pacemaker MOT once a year.

But the best thing about now being on tocilizumab (Actemra) is that the a/fib episodes are almost gone, when I have one the heart rate has a much lower peak and I even have bradycardias of as low as 40 and my BP is bumping along at a much lower level than before! Which is also rather strange - since tocilizumab has a reputation for RAISING BP! Hopefully I won't follow the usual trend of developing even higher cholesterol either!

[Sophiestree in reply to PMRpro]

"2 cooked 3 course meals"

😱😱😱😱

I struggle thinking about what to eat once a day and only one course... oh my!

[PMRpro Ambassador in reply to Sophiestree]

Tell me about it! I had never done it before in our 50 years together - and it had to be like he'd had in the palliative unit, very Itallian!

[Sophiestree in reply to PMRpro]

Too funny. I always thought Italian hospitals weren't great re food and expected the visitors to bring it. I remember my mother being in one (albeit eons ago) there was no food supplied!I admire your patience, I would have told my husband to do one!

[PMRpro Ambassador in reply to Sophiestree]

I might have, but under the circumstances ...

I don't know about Italy but my experiences here in South Tirol with regard to food are superb. I don't even have to tell them dietary requirements - all on the computer. Adhered to. And proper food - not sandwiches, Which is freshly prepared in their own kitchens and lots is home made rather than bought in.

[Sophiestree in reply to PMRpro]

Now, that IS efficient...

[NursePeggy in reply to PMRpro]

My OH was the same - lunch and dinner had to be at the same time every day ! Now I eat when I am hungry.

My SVT’s come randomly and often catch me out. It’s usually during or after eating or when I am very stressed. Sometimes something like the strong smell of paint has started one.

That is wonderful that the Actemra has helped so much with your AFibs and your blood pressure. I hope your cholesterol follows the same pattern !

[piglette]

You are not producing cortisol yourself because the steroids are doing it for you. Didn’t the GP realise that? You are at the point where the adrenal glands will have to start working again though. That is probably why you got the ‘deathly fatigue’ at 6mg. If you are having heart palpitations on a regular basis it is worth mentioning it to your doctor.

[NursePeggy in reply to piglette]

Thanks Piglette. Please see my replies above.

[Sophiestree]

Oh my goodness. We as a family went on holiday to Romania around early 70s. That was an eye opener. They had dollar shops for tourists where you could buy soap, deodorant etc but only pay in US dollars. The locals used to stop you while you were in a lift or on the beach and ask to exchange money so that they could buy what they were clearly to them, luxuries. Very humbling. Food on the other hand was.... hmmmm.... not the most enticing.

Finding a nurse must have been a challenge!

[NursePeggy]

I have just lost my reply to you - I keep doing it, so frustrating!

Thank you Dad2Cue for your very informative and interesting reply. I now also think that it is Adrenal Insufficiency causing my rapid heartbeat etc in the early mornings. I happened to wake up just before 2.00am this morning, so took 2 mg extra Pred. When I next woke up at 6.00am I had no rapid heartbeat ! I shall do the same tonight with hopefully the same result. For the last 8 years I have been taking all my Pred with breakfast, I shall now split it.

I also have big spikes in my blood pressure - both highs and lows. My Cardiologist actually took one of 236/123. It scared us both !

[Karenjaninaz]

BP going up the way you describe reminds me of a pheochromocytoma.

[NursePeggy in reply to Karenjaninaz]

Hi Karenjaninaz - my Cardiologist tested for it and it was negative. She thinks I have an extraordinarily labile BP. I have a continuous huge amount of stress in my life which doesn’t help. There is also probably a certain amount of White Coat syndrome !

[NursePeggy]

Your bout with Uveitis sounds horrible.

Last night I took 2 mg Pred at 10.30 pm and woke at 5.00am - no rapid heartbeat, thank goodness, but I still have the weird surge of unpleasant tingling that goes through from head to toe. I still think that my Histamine Intolerance plays a part in this, as I understand it also plays a part in the waking up process.

I am going through a flare up of PMR so was going to increase my Pred slightly anyway.

I shall try 6 mg in the morning and 3 mg in the evening for a few days. I am always reluctant to increase the Pred. I dread to think how much I have taken in the last 8 years.