Low BP, Vertigo and Adrenals, Dehydration

[Missus835]

I'm concerned about adrenal insufficiency, but can't get GP to hear me. My BP has been what I would call low, since at least before Christmas. Two days ago it was 116/52 and 109/41. I am on two BP meds, Perindopril and Metoprolol. I'm thinking maybe I need to taper off one of them? Mentioned this to GP last trip in, but she didn't even take my BP. I have read up on the adrenals (thanks DL for the links) and seem to have pretty much all the things. She says "we" don't do cortisol or ACTH tests. Should I push for an Endo?

My Pred dose is 5 mg (supposed to be 4 but I'm reluctant to drop it down). I've been at 5 mg for about 3 weeks. GP want me to drop 1 mg every 28 days, but that's not possible, so I've been trying to manoeuvre the Pred I have to fit 1/2 mg drops. The last couple of mornings, I've had bad vertigo on trying to get out of bed and been sitting til it settles and then, it starts up again on laying back down. The room is completely spinning. Took me back to my drinking days. LOL. Maybe ears? I have had that "full head, ears backed-up feeling for months and months". No headaches that are not neck related. No jaw pain. Scalp is pretty much always tender on the top (as if I've parted my hair the wrong way), except when I've had to raise the dose of Pred. It goes away and then comes back when I drop to whatever level I'm at.

I did have a course of anti-fungal meds for oral thrush, which I've finished. Still have the sore throat. Tongue a bit geographic. GP said that "a dentist could diagnose that". I'm like "what?" I had arranged a phone appointment to discuss another course of anti-fungal, because previously she had said "you take it until the thrush is gone". Terrible dryness and thirst. Eyes are crispy dry. Feeling very dehydrated, but drink water constantly, throughout the day. At least four 500 mL bottles. I use Olopatadine and Tobradex drops atm. I had mentioned Sjogrens to her and received the "deer in the headlights" stare again.

My acid reflux has been acting up for about a month or more, with actual regurg of food and possibly the acid is making my throat sore. She has referred me to a ENT for a scope, but I'm thinking I need some kind of gastro scope, as perhaps it could be a hiatal hernia or internal bleeding. I've a lot going on, it sounds like I'm a hypochondriac, and GP makes me feel like she would prefer patients who are coming in for PAP tests and the like or prescription renewals. I've been trying to get myself back on the list for a different GP, but they tell me it's not possible as I already have a family doc. (Nova Scotia). Seems like I've been self diagnosing since having this GP.

I know it's a long post. Thanks for having a look. Your help is always appreciated.

[HeronNS]

Does she work in a practice with other docs who cover for each other from time to time, or is she solo? If the ER sitution wasn't so hit or miss regarding wait times I'd suggest you show up there with all your symptoms. Was your referral made with some sort of high priority flag - don't really know how they do that or whether it even works. 🍀

[Missus835 in reply to HeronNS]

She works alone Heron. ENT visit is March 18th, which is not too bad considering wait times in NS. Hopefully he will shed some new light on the situation. Diastolic BP still low as of about 2 hours ago. This is after walking through Walmart to get to the BP machine. LOL. It does have me quite concerned and maybe a trip to the ER (yet again) to get it all sorted might be a good idea. In the meantime, I guess I'll try using a little more salt and drinking even more water. I am so dry and meant to try some Xylimelts, but forgot them. I think perhaps now I'm on a lower dose of Pred, the BP might be levelling off and I need less medication....maybe. I have an IP appt booked for Feb 20th and hopefully she'll actually take my BP. Eye roll.

[Blearyeyed in reply to Missus835]

Your diastolic is low , it could be caused by the BP meds , but you can't be sure and need to be.There could be so many possibilities but if you are having so many symptoms you should go to the ER , even if the wait is long.

You need some guidance and cardiac/ BP checks , it's not something you can wait until March to sort out.

Hope you go and get emergency help and let's us know how you get on.

Take care , Bee

[Missus835 in reply to Blearyeyed]

Hi Bee. Think I'll go into ER. Awake again this morning with soaking sweats. I have extreme thirst as well...all the time. Around 7 to 10 mg Pred, was doing well. Since I got to 5 mg, not good. Thanks m'dear.

[HeronNS in reply to Missus835]

Oh that's great you have the specialist appointment booked already. I know a month seems long time still to wait, but in the big picture here that's lightning fast! Both hubby and I have much sadder tales to tell about referrals to respective spcialists. Meantime, take it easy, drink your fluids and before you know it hopefully you'll be seeing someone who can take competent charge.

[Missus835 in reply to HeronNS]

Fainted this morning and now at DGH ER. Thanks Heron

[piglette]

Your diastolic blood pressure is quite low. As you are taking two medications for high blood pressure your doctor should be checking your blood pressure.

Dizziness on getting up could be benign paroxysmal positional vertigo. If it is that, you can use the Epley manoeuvre to sort this out. My brother went to a physio, as his GP did not do it. It took the physio a few seconds. My brother said it was like a miracle. You can do it yourself apparently. Just look it up on Google.

I think you are probably still on too high a dose of pred to have a check on your adrenals at the moment. I am not sure what symptoms you have on the other hand.

Perhaps the ENT check will help, as you will be seeing a new person who may refer you to someone else if need be.

Out of interest have you had had a check of your blood sugar? It is a good idea if you are on steroids to have a regular check.

[Missus835 in reply to piglette]

No Piglette. No check on sugars. She won't send me for bloodwork. I have asked and was actually having bloods every 3 months when I was seeing a rheumatologist. GP says "you don't need that"....but I do.

[piglette in reply to Missus835]

You mean she can measure your blood sugars by just looking at you??!! Very clever.

[Missus835 in reply to piglette]

I wish she were that good. She does tell me that I "read too much". Someone has to though. Thanks for your replies.🌻

[piglette in reply to Missus835]

What rot she talks!

[Pawscat11 in reply to piglette]

Did you have high blood pressure before taking steroids. I did not and needed to go on meds but Cardio have reduced them as I have come down and now at 5mg of Pred they have been taken away completely. I have a home machine & keep check just to make sure its ok. Its running a little up but they have given me a marker. As I am due to reduce pred further they dont want blood pressure dropping like a stone by being overmedicated. I would suggest you buy a home machine and take it twice a day for a week and go back armed with the data including time of day taken and what you were doing. It is what I was asked to do by cardio as a one off visit doesnt show trend.

[Missus835 in reply to Pawscat11]

High blood pressure began after taking pred for awhile. I'm on two meds for it. Lately it's bern quite low. Soaking sweats have me awake at 4:30 AM. Been having them a lot again lately. Ugh

[PMRpro Ambassador in reply to Missus835]

Increased sweats for me was a sure sign of increasing inflammation and an incipient flare. Especially when they happen at that sort of time - which is when the inflammatory substances are shed in the body.

[Missus835 in reply to PMRpro]

Now at ER Pro. Fainted on way to toilet earlier.

[PMRpro Ambassador in reply to Missus835]

Mind and tell them all you have told us!!!!

At least you should get a few of the blood tests you need done ...

[piglette in reply to Pawscat11]

Did you mean to address your post to me? In reply to your question I have taken my blood pressure daily for as long as I can remember. I save it on a free app. I have always suffered from low blood pressure, so I faint every so often. Inherited from my father!

[Pawscat11 in reply to piglette]

No, to the poster so sorry

[SnazzyD]

Your description of dizzy/ear symptoms sounds exactly like what I get from time to time. It can be really bad so I always have some Phenergan liquid or Stugeron with me. They are for travel sickness and deal with inner ear ‘confusion’ . Like piglette suggests the Epley Manoeuvre can work like a charm if it is that. I learned it from YouTube. It’s a bit of a fiddle at first; I had to keep checking what they actually said. It can make it worse for a minute but I just repeat. I also find too much salt makes me more prone but with your fluid intake, it might be too low. A virus or no obvious reason can also make it happen.

Your GP should not be ignoring your low bp. It might be you need something different now.

Hopefully the ENT will be able to comment sensibly on the Sjogren’s type symptoms. At least offer more than the rabbit in the headlights.

[tiredbutoptimistic]

re the Epley manoeuvre it can indeed be miraculous. You can do it for yourself but if you have a good friend or relative they can do it for you and it can be easier than trying to remember what to do yourself. I armed myself with a print out and 'did it' for my mother and it worked almost immediately. It is quite physical so would need to be a good and quite strong friend! I second getting your blood sugar checked - constant thirst is a real flag for problems there. If your GP really isn't listening is there any sort of complaints procedure - or would that be a too radical/damaging move? A word with the practice manager equivalent?

[Gala123]

I cannot comment on your symptoms but I can see that there is a lot going on and that your GP seems to be dismissive. This is really not acceptable. You have the right to have your concerns addressed and if your GP thinks that the symptoms are not a sign of anything serious she should explain how she came to that conclusion and how to ease those symptoms so that you could have a decent quality of life. Is there any way to complain? You definitely need a review of your BP meds and also "we don't do a test" is not an answer. If she thinks you need the test she should refer you to people who do it, and if she believes you do not need the test she should give you the rationale that would sounds convincing to you. And you have the right to insist on that. Good luck! I hope you get answers and help in the end.

[Angelsmummy]

Oh my word Missus,poor you!Think another trip to the Drs reminding them of the Hippacratic Oath that they took at med school might be on the cards.Really hope that something is done,even just to put your mind at rest.Wishing you all the very best xx💐💐💐😜🤞🏼🤞🏼

[byebyebicycle]

Hi there, lots of good advice here and I'd like to add something about Metoprolol. Metoprolol slows down your heart rate and makes it easier for your heart to pump blood around your body. But it can lower your heart rate too much and cause the dizziness you mentioned. I was taken off metoprolol which I taken for years because of a very low heart rate and we are talking about low 40's and even below. After dropping the metoprolol for Doxazosin I've been fine. But I do note my heart rate every time I take my blood pressure. Look it up on-line and maybe it's something to consider to discuss with your GP. Good luck.

[Missus835 in reply to byebyebicycle]

Yes. Was thinking the Metoprolol because it was originally added on due to fast heart rate. My resting heart rate is averaging around 70 and that's after walking thru Walmart to get to the BP machine.

[BooAlan]

Sorry to hear you are going through a difficult time at the moment. I can't offer much advice as I am still trying to negotiate this pmr journey myself but the intense thirst and thrush can be a sign of high blood sugar. You can buy a finger prick blood test kit from Amazon and check for yourself then go back to her with the results. Good luck and I would persevere if you know something is not right! Good luck!

[Pixix]

I have vertigo and high blood pressure. But then I started getting low blood pressure when I stand up..leg getting out of bed in the mornings. My GP has diagnosed orthostatic hypotension (also known as postural hypotension). Without me realising it my blood pressure drops like a stone when I stand up, makes me dizzy (I thought it was vertigo each time). I have passed out a few times, hit my face against a wall last time! Problem is that the rest of the time my BP is currently higher than usual. I also take perindopril, but don’t think it’s that,I took it for many many years before this started. I’m no aDr & not saying that’s what you have but you may like to read it up & see if it fits,as your Dr doesn’t sound too helpful! If you have questions after reading it, I’m happy to try& help! Forgot to mention…my dry mouth is so bad it wakes me 4-6 times every night & my tongue is stuck to roof of mouth!! Dr has prescribed a saliva spray, & the dentist yesterday noticed it immediately & has recommended Biotebe toothpaste, gel, mouthwash to try & see if it helps. No amount of extra fluid intake helps!! S x

[Missus835 in reply to Pixix]

Yes. I was thinking Metoprolol which was added on a year ago for fast heart rate. Now maybe too slow. Dry mouth is as you say. Also soaking night sweats have begun again. Thanks Pixix.

[Pixix in reply to Missus835]

Oh, yes! I get the night sweats, too…but also gave them during the day…embarrassing if out as it drips off my face, my nose, ears, my hair is soaking…& that just the parts that people see!! But the sweats are lessening as I taper! But not disappeared!

[Karenjaninaz in reply to Pixix]

At night, when I sleep, my mouth opens like a trap door and naturally my mouth will be dry. On top of that I am using oxygen. I need to get the oxygen through the nose. I’ve solve that problem by gently, taping my mouth with paper tape. I put a little tab on the end of the tape in the event that I need to take it off quickly. My mouth is not dry when I wake up. During the day can’t walk around with the mouth open. It’s going to get dry.

[Pixix in reply to Karenjaninaz]

Wow…I’ve never heard of anybody taping up their mouth. Interesting idea! My mouth is closed when it’s dry…it happens a lot during the day, too, so pretty sure about it. My dentist has taught me how to activate the saliva from my salivary glands, & to check they are working every few days. She’s given me the name of toothpaste, gel & mouthwash specially formulated for my problem. It’s called Biotene. I’ve just bought the gel, not tried yet. MyDr has prescribed a mouth spray…it’s like ‘false saliva’, & I use that, too. Plus you can buy gummies that help. I’ve just started taking morphine, which always dries my mouth more. Good luck!

[Karenjaninaz in reply to Pixix]

Before I learned the mouth tape trick I was complaining of dry mouth. Biotene was also recommended, but I had a bad reaction to it. My mouth got so sore.

[Pixix in reply to Karenjaninaz]

Thanks for the warning, will be careful with the biotene!

[Sophiestree]

Nothing to add other than your GP sounds dangerous. How can she not even take your blood pressure when you are on medication for it. That's just negligent to start with.

[Missus835 in reply to Sophiestree]

Agreed. Especially when I'd mentioned it had been low. It's not a case of shopping around here in Nova Scotia. I was on the list for about 2 years before I got this one. Now I can't get back on the list.

[Sophiestree in reply to Missus835]

so you had no GP for 2 years? Or maybe I misunderstood as don't know your system. Are you saying you can't get back on the list as you now see this GP? Perhaps the ED is your only option then.

[Missus835 in reply to Sophiestree]

Yes. My previous GP retired end of 2021, so we go on a "Need a Family Doctor" List. It takes at least 2 years as there are 1000s without. My daughter and her 2 teens just got assigned a family doc last week. After 3 years! Went to ER early yesterday morning via ambulance. Just got home this afternoon. I was in ER about 30 hours. Saw a useless internist eventually. I was excited...for naught. He put me on a heart monitor overnight. There were 2 episodes where my heart rate went all wonky and registered 50 bpm. Nurse was alarmed. I was dozing at the time. Felt no different. They did an EKG. My stomach has been very gassy and active. My GERD has been acting up for weeks. After awhile everything settled. Still acidity. Nurse told me to take a Ranitidine. This morning I asked the Internist to please do a CT scan of esophagus and stomach before I left. He refused saying he could not see any need for it. I will be wearing a heart monitor at home whenever he gets around to it. I'm now home. No further knowledge of what's up. Flabbers are ghasted! There were scads of bloods done. I will be putting in a complaint to NS College of Physicians and Surgeons. I gave ER a complete rundown on all my issues, especially current ones. It costs me $146 for an ambulance trip, which I wouldn't mind had I come home enlightened or even admitted.

[Missus835 in reply to Missus835]

PMRpro fyi ^^^.

[Sophiestree in reply to Missus835]

Wow... genuinely don't know what to say to that.... and there I was thinking the UK was in a sorry state. I'm assuming due to the lack of GPs you all end up having no choice but to go to the ED....

Horrible for everyone too.

[byebyebicycle]

One thing to note on blood pressure and it is important. Walking into your GP and having your blood taken on the spot is not the way to get a baseline for what your reference blood pressure actually is. And you GP knows this ! Your BP will then always be higher, sometimes much higher. You need to be in a stable resting condition for 15 minutes before taking a BP measurement and then take 3 measurements and average those. This gives you a baseline BP which is what you need to refer to.

When you do this 15 minute wait your heart rate will be "almost" steady and note that as well.

Sorry to dwell on this but GP's cannot afford to wait the 15minutes and I challenged my present GP and he agreed a BP measurement he does in a normal consultation is to see who really has super high or super low BP. This he does not explain to patients as I expect many if not all GP's do.

[PMRpro Ambassador in reply to byebyebicycle]

These days you are lucky if they take your BP at all!!!

[Missus835 in reply to PMRpro]

🙄 Well they do have an Internist coming to assess me. I'm hoping the extra bloodwork they'll be doing included at least cortisol..probably too late in the day for that.

[Missus835 in reply to byebyebicycle]

Good to know. I'm at the ER right now and they did do Orthostatic BP. Mine of course is backward and rose when I stood up. Always something.

[PMRpro Ambassador in reply to Missus835]

Orthostatic hypertension IS a thing ...

healthline.com/health/high-...

[Missus835 in reply to PMRpro]

Well I know mine went up. Whether both numbers I'm unsure. The systolic has been quite low for quite awhile now and I mean below 60.

[PMRpro Ambassador in reply to Missus835]

SYSTOLIC of 60????? I hope not - that is the upper number!!!!

[Doraflora]

oh dear Missis835. You’ve got a bagful of things going on there. Poor you.

At least things should be getting some sort of attention now.But do keep on at them and tell them EVERYTHING

[Missus835]

Lol. The lower number. Sorry.