Florinef for those with orthostatic HYPERTENSION?

[bombsh3ll]

I recently came off licorice root (which works similar to florinef) but had lost effectiveness & I was also concerned about my high BP & the long term effects. Off the licorice, my BP is now in the low/normal range BUT goes up when I stand (although not to the stroke levels it was doing recently on licorice).

I have symptoms of hypovolaemia, cold peripheries, severe OI, also drink loads but don't hold fluids. Labs show undetectable renin & aldosterone. 

Thinking of trying Florinef again at a very small dose (bad side effects last time but taken together with licorice)

My question is does/has anyone with the "hyperadrenergic" type presentation ie significant raise in BP when standing take florinef and have you found it helpful?

Theoretically expanding blood volume should dampen down the sympathetic response to standing, however florinef also seemed to cause worse vasoconstriction in me and little/no evidence of fluid retention.

Many thanks.

B xxx

[toomanyproblems]

I think you might have to try if you have no aldosterone activity. I mean you have to have some mineralocorticoid, right? I do take it and I have hypertension upon standing normally. I have to take it anyway with primary Addison's. My quandary is just how much. I try to keep my florinef steady and vary salt intake (not as salt per say -- you know what I mean) to experiment with how my blood pressure, fluid balance, symptoms, etc., are affected. I'm trying to balance it with clonidine. It's a work in progress and there are so many variables its challenging to get a foothold on a plan going forward. 

I've tried not taking it and I still had hypertension. With no other natural steroid secretion of my own, just the replacement prednisone, I'm not getting much of any mineralocorticoid activity. You have some natural cortisol secretion so you do have some mineralocorticoid activity. But is it enough?   

[bombsh3ll]

31 minutes ago, toomanyproblems said:

I mean you have to have some mineralocorticoid, right? 

I have seen it concluded in a study that whilst rats devoid of mineralocorticoid activity can survive indefinitely on extra salt and water alone, it will eventually lead to death in dogs and most humans. Last I checked I wasn't a rodent, so yes this does bother me!

I am currently having my electrolytes monitored - before starting licorice I had low sodium, high potassium. Normal levels during. Off it my potassium initially went to 5.1 then came down to 4.6 (normal), sodium is sinking from 139 (on licorice), then 136, then 134. Due another check Friday. 

I may end up trying back again on a very small dose to see if it helps symptoms even if my labs & resting BP hold steady, as I remain very lightheaded regardless. I can get free tests for basic electrolytes but the aldosterone test is £69. Trying to decide whether to repeat it before giving the florinef another go, was done previously in 2016 and 2017. 

37 minutes ago, toomanyproblems said:

I'm trying to balance it with clonidine.

How did you/your doctor settle on clonidine as the BP med? I tried it before hoping to calm adrenaline surges & expand volume, but it dropped my HR and BP even at quarter of the smallest tablet. 

Thanks for the helpful info anyway. 

B x

[toomanyproblems]

23 minutes ago, bombsh3ll said:

 

How did you/your doctor settle on clonidine as the BP med? I tried it before hoping to calm adrenaline surges & expand volume, but it dropped my HR and BP even at quarter of the smallest tablet. 

I'm not sure it's *the* most helpful med. But it certainly is a helpful med to tamp down my sympathetic nervous system. Sometimes I only take 0.025 mg. I'm wary of rebound. 

I'm pretty sure I asked my PCP for it. She was nervous giving it to me because my BP also drops so low but she did with specific instructions. I don't have a POTS doctor. I've been seen by cardiology and had all the heart tests to know my heart is basically ok, but they don't really know anything about POTS, and neither do any of my neurologists. I'm not convinced a big trip somewhere specialized to be rediagnosed for something I've already been diagnosed with is going to help. So I'm sort of on my own. Lots of times, my docs will prescribe me what I ask for within reason. I never want pain meds or addictive stuff so that helps  

[toomanyproblems]

2 hours ago, bombsh3ll said:

I recently came off licorice root (which works similar to florinef) but had lost effectiveness

So how long were you on the licorice root and how long has it been since you came off of it?

[bombsh3ll]

 

10 minutes ago, toomanyproblems said:

So how long were you on the licorice root and how long has it been since you came off of it?

I was on it approx 3 years. The effect was miraculous at first, I was close to a normal person in function and it totally transformed my quality of life, however it lost effectiveness after about 1-1.5yrs. I was just too scared to come off it in case I ended up completely bedridden & unable to even sit up. I have been off it 1 month now. 

I am unable to tell if I am that much worse as I am basically couch bound anyway, but my BP is no longer spiking scarily high. It does still go up though when I stand (today sitting 106/67, standing 131/89, HR inc about 30)

One thing that seems strange though is people lacking aldosterone often crave salt - I never have. I did salt load for ages then stopped due to very high BP spikes and switched to just drinking balanced ORS solution to get my salt which is more palatable. I am always very thirsty though and pee loads but I much prefer the taste of plain water or flavoured drinks which is not good with a low blood sodium level.

Did you ever crave salt when not taking fludrocortisone?

B x

[toomanyproblems]

I did use to crave salt. I always knew it was bad when straight salt didn't taste salty enough.

[toomanyproblems]

Well, I finally got a chance to quote this old article that I've remembered all the years from the New England Journal of Medicine. It says it takes two to four months to regain suppressed aldosterone activity after daily licorice ingestion. This paper was a big deal at the time because it brought to the forefront the fact that licorice could act similar to a mineralocorticoid and to delineate the mechanisms by which it did this. 

https://www.nejm.org/doi/full/10.1056/NEJM199110243251706

So anyway, you probably already know this but I guess you'd have to be off the licorice at least another month if you want a true reading on your aldosterone. I hope you have a better  response to the florinef this time if you decide to go on it. 

[yogini]

Have you been tested for low blood volume?

[bombsh3ll]

19 hours ago, toomanyproblems said:

I guess you'd have to be off the licorice at least another month if you want a true reading on your aldosterone.

Thanks that's really useful info! I think I will stick it out another month (unless absolutely necessitated by electrolytes or BP) given I have to pay for that lab test so don't want to have to repeat it many times. I tested low prior to starting the licorice though so I don't have great hopes of it magically picking up on its own. 

3 hours ago, yogini said:

Have you been tested for low blood volume?

I had a test but unfortunately got no meaningful result due to technical problems. That was the only center in the UK offering it (not DAXOR technology but the old style version of RBC labelling) and they stopped performing it shortly after my visit as it was discovered that the 4 hour round trip the blood had to make across London to the lab & back was causing erroneous results due to coagulation.

I would love to have a proper test with a DAXOR machine but they are not currently in Europe. 

I base my theory that I am volume deplete on clinical picture: cold pale extremities, standing tachycardia, narrow pulse pressure, dry eyes & mouth, sluggish capillary refill, poor peripheral venous access (used to have plump juicy veins when healthy), syncope, nausea, sense of non-psychogenic anxiety/agitation & the fact I pee ~ 6 litres a day! That plus the studies on POTS showing volume depletion to be common (though not universal), and my spectacular initial improvement with the licorice which is a volume expander. 

I just wish I could get a test to prove if this is the case or not. Have you had this done and if so what was the result? Did it provide a help in guiding treatment?

B x

[yogini]

I haven't had the test.  I believe most dysautonomia patients have normal blood volume but benefit from expanding blood volume anyway.  I have heard that florinefworks for people who have been diagnosed with low blood volume.  High BP can be a symptom of low blood volume.  I think it works less well for hyperPOTS, for which high BP is also a symptom.  I have low-isa BP and a low dose of florinef made my BP too high and I had a hard tie wearing off of it, so I am personally a bit wary. 

[toomanyproblems]

I believe I have low blood volume and hyper pots. My blood pressure usually goes up with my heart rate  upon standing, especially the diastolic. I've also had a mild polycythemia (high red cells) for over a decade. I believe this is a relative polycythemia due to low plasma volume making it appear as though my hematocrit is increased. 

Unfortunately the test normally done for blood volume involves radioactivity and is rarely done. But all my features add up to low blood volume.

[bombsh3ll]

11 hours ago, yogini said:

High BP can be a symptom of low blood volume.

that is what i think is going on with me for sure! When I feel best, my blood pressure is lower, but taking drugs to lower my bp artificially makes me faint. 

10 hours ago, toomanyproblems said:

My blood pressure usually goes up with my heart rate  upon standing, especially the diastolic. I've also had a mild polycythemia (high red cells) for over a decade. I believe this is a relative polycythemia due to low plasma volume making it appear as though my hematocrit is increased. 

I have this too! In fact when I had the BV test I looked more polycythaemic than lance armstrong, red cell mass was reported so high it was incompatible with life - 200% of normal - however this was determined to be down to the faulty test due to length of time to transport the blood during which time most of it had clotted so couldn't be reinjected properly, skewing results. my haematocrtit on standard testing is always high though.

B x

[toomanyproblems]

31 minutes ago, bombsh3ll said:

 

I have this too! In fact when I had the BV test I looked more polycythaemic than lance armstrong, red cell mass was reported so high it was incompatible with life - 200% of normal - however this was determined to be down to the faulty test due to length of time to transport the blood during which time most of it had clotted so couldn't be reinjected properly, skewing results. my haematocrtit on standard testing is always high though.

B x

I believe this relative polycythemia is a huge red flag for low plasma volume if no other case can be found.

[bombsh3ll]

I know, I just wish there was a permanent method of increasing PV! Even when I have been lucky enough to get IV fluids it is mostly in my bladder before the bag is done!

B x

[Pistol]

@bombsh3ll - in my case hyperPOTS runs in the family and we have found great relief from IV fluids BUT - the trick is that they have to run no faster than 150 ml/hr or the fluid ends up outside of the blood vessels ( causing edema ) and the just gets peed out. Faster infusion will also cause high BP. 

[bombsh3ll]

13 hours ago, Pistol said:

@bombsh3ll - in my case hyperPOTS runs in the family and we have found great relief from IV fluids BUT - the trick is that they have to run no faster than 150 ml/hr or the fluid ends up outside of the blood vessels ( causing edema ) and the just gets peed out. Faster infusion will also cause high BP. 

Yes I wish I had regular access to IV fluids & could experiment. Even paying to go to a private place though they wouldn't want you there 7-8 hours just to get a litre. I don't even get edema, I can start a 1 litre bag having just peed, and before the bag is done my bladder is full again (and due to chronic polyuria I have a large bladder capacity of over 1 litre), hence it is literally coming out faster than it goes in!

You mentioned your sister starting IVs at an outpatient infusion clinic - how slow are they willing to run a litre bag? It is really only practical to run so slow either at home or as inpatient given the length of time 150ml/hr would take.

B x

[Pistol]

Hello @bombsh3ll - my sister lives in germany and she gets her IV fluids at her PCP's office one day a week over 6 hours. For now she got n order for 4 weekly infusions. After that month is over they will watch her how she is doing ( in addition to the fluids she considerably adjusted her work schedule and takes frequent rest periods during her day ). She has already seen an enormous difference from fluids and the lifestyle adjustments!!! 

[bombsh3ll]

That's great, I'm so pleased your sister is able to access IVs and that they are helping!!!

Slowly, this practice is making its way across Europe! Maybe one day in the UK!! I will definitely try a slower rate next time I get a bag. 

B xxx

 

[Spiders from Mars]

I haven’t been officially christened as hyperadrenergic yet, but I’m pretty dang sure.  Just had a tremor episode with bp spiking to 175/103 (resting bp an hour before was 102/62).

Anyway, was on florinef for about 2 months at .1mg twice a day, which I learned later is incredibly high to start at. I ended up with severe edema in my hands and abdomen, the most extreme palpitations I’ve felt yet, and my bp was staying up even after sitting (135/90 at cardio) which it normally didn’t do. Came down to .1mg once a day, and then off. I think most of the worsened cardiac symptoms were due to hypokalemia, which my cardio didn’t warn me was common on florinef, nor did he even bother to check. My Kardia ecg app showed hypokalemic patterns, in my laywoman’s analysis of them. As was already mentioned, aldosterone levels can take a while to come back, even after tapering off fludro and I assume licorice root too. I have no idea where my levels are at because they were never tested.

On midodrine now, still have hypertensive spikes. Ironically I felt the best on florinef and wonder if I’d fare better if it had been started lower at .5mg or even .25mg. My new EP gave me a beta-blocker to stop bp/hr spikes, but I’m afraid to take it and have my already low resting bp/hr plummet. I’ve seen POTS people say they take fractions of prescribed amount of beta-blockers and that low-dose is key, so perhaps low dose florinef might be the key too. 

[Pistol]

Hello @Spiders from Mars - I too have hyperPOTS and share many of the symptoms you have described in other posts. If I recall correctly you have not yet had a TTT? That is currently the most helpful tool in diagnosing POTS, NCS and OH. I understand that your EP has only been doing halters but that does not prove anything. In my case I had an implanted loop recorder that monitored every heart beat for 3 years - even during syncopal episodes - and all it ever showed was tachycardia u[p to 170's and PVC's. The 2 TTT's I had on the other hand showed NCS and POTS. The good thing about a TTT is that it shows both HR and BP as well as monitors your symptoms, that is what is necessary to pinpoint the type of dysautonomia you have. --- Regarding your med: after my diagnosis of hyperPOTS my specialist mentioned that my then treatment of midodrine was not effective in my case due to the hyperPOTS. I was switched from Metoprolol to Carvelidol which has helped a lot more. Now I also take Diltiazem to dilate the blood vessels and other meds like SSRI ( to balance neurotransmitters ) and guanfacine and Ritalin which both help with fatigue and brainfog ( guanfacine helps with BP as well ). Some people also benefit from Clonidine but it was not for me. All my meds wee always started on the lowest - even pediatric - dose and then increased to my tolerance. Some of them I now take the highest dose. -- In other words: if your EP is not willing to order a TTT then how will he know what meds are good for you? And if he refuses to give you a TTT - ask for a second opinion … or see an autonomic specialist that can both diagnose and treat your specific type of dysautonomia. I saw 5 cardiologists including one EP before I finally found a specialist. 

[bombsh3ll]

9 hours ago, Spiders from Mars said:

I haven’t been officially christened as hyperadrenergic yet, but I’m pretty dang sure.  Just had a tremor episode with bp spiking to 175/103 (resting bp an hour before was 102/62).

Hi Spiders, sorry you are dealing with this too. I have similar scary BP episodes, mine goes up when I stand (no longer to worrisome levels now off licorice) but also out of the blue as well accompanied by tachycardia (tested negative multiple times for pheochromocytoma).

I also do not have a formal POTS category - here in the UK it generally stops at "you have POTS, goodbye" (if you are not labeled anxiety, hypochondriasis etc) however I did get supine and tilted catecholamines tested last month and am awaiting the results. Clinically I seem to fit a hyperadrenergic, hypovolaemic "low flow" type, but believe my high SNS activation is secondary to volume depletion. 

I did not get on with midodrine (HR in 40's BP 190/110, felt awful) or beta blockers (even worse lightheadedness/OI). If you are having BP spikes like that, midodrine may not be the best for you either - it tends to help those with more blood pooling/inadequate vasoconstriction more. 

I really believe my problem is poor blood flow as opposed to low blood pressure. It frustrates me that many doctors do not seem to grasp the difference. 

I too wonder how I would have done on just a tiny starting dose of florinef - quarter of a 0.1mg tablet. So far my sodium and potassium have held steady without mineralocorticoid replacement. 

Do you plan to give the florinef another try at a lower dose? What symptom benefit did it give you? Less lightheadedness & more ability to stand is what I am looking for. 

Best wishes,

B xxx