Anyone with HIGH blood pressure?

Addison's Disease
#1

When first diagnosed with Addison’s, I had orthostatic hypotension (low blood pressure when standing.) My blood pressure has always run on the low side.

But all of a sudden, it has skyrocketed. I was hospitalized several times with pressures around 170/115. I am on two different meds to lower my blood pressure now, but it is still not responding very well.

Has anyone else had this problem? They tried taking me off my steroids, but then my pressure dropped too low again and I felt awful.

Thanks for anything anyone can share.

-Allison

#2

I am on 3 blood pressure meds now. B4 Addison’s, my
blood pressure was extremely low, too. I have, also,
gained 25 lbs. since taking the steroids. I do not eat
that much----it is mostly fluid retention. I feel like the
Good Year Blimp!!! Any suggestions as to losing this???

#3

Brennie - I wish I did have a solution to the weight gain. I am up 30 lbs as well. No matter what I do (dieting, exercise), it doesn’t make any difference. The doctors say I should stop worrying about it, because there is nothing I can do. So I’m trying to let it go - but it is hard. Good luck to you.

#4

I, too, am trying to let it go, because nothing I do seems to
matter. I can not lose weight regardless. I have resigned
myself to “Fat Clothes” now. My new duds are all with
elastic bands. HA!!! I can not wear any of my dress clothes
for work, so the “Fat Clothes” prevail!!!

#5

HELLO!!! IS THERE ANYONE ELSE WHO READS THIS SITE?

PLEASE SOMEONE TELL ME HOW THEY ARE DEALING WITH

ADDISON’S!! I NEED SUPPORT!!!

I CAN NOT STAND THE FATIGUE AND THE WEIGHT GAIN!!

#6

hi i to have very high blood pressure but they say its better to be on the steroids i was taken in last week with 279 over 170 gave the ambulance crew a fright hahaha all jokes aside i’m finding this increasingly hard to deal with .i hope it works out for you i’m seeing my consultant in a week to see if they can give me something or reduce my steroids so i will let you know.
Paula

#7

Dear Lord, you are lucky to be alive. I am surprised that you
did not have a stroke. The highest mine has ever been was
207/176. I spent a week in the hospital before it ever came
down to a normal rate.
My family has noticed that at times when I have had a really
stressful day that my cheeks will be bright red. I started
taking my bp, and it has always been high. The doc ordered
another bp pill to take of an evening. I am doing better now.
I take Exfourge(2 per day) and Tekturna.
Take it easy. Hopefully things will get better.
May God Bless!!

#8

HELLO! HOW ARE THE ADDISONIANS DOING? I HAD A REALLY
BAD WEEKEND----WAS SO FATIGUED THAT I BARELY MADE IT
FROM THE BED TO THE BATHROOM. I AM FEELING BETTER NOW.
I JUST WISH THAT A CURE FOR THIS WOULD BE FOUND.
EVERYONE----TAKE CARE!!!

#9

hi well this adissonian feels like s… i’m so tierd and hurt all the time . ihave to go into hospital next week for more tests but i wonder if they really know what their doing .do you suffer from headaches and pains all over along with exhaustion ???
Paula

#10

YES, PAULA, I DO! I HAVE REALLY BAD MIGRAINES. I, ALSO,
ACHE ALL OVER. THE FIBROMYALGIA CONTRIBUTES TO THAT.
AT TIMES, I CAN BARELY GET AROUND----I AM TOO EXHAUSTED
TO MOVE. LAST WEEKEND, I STAYED IN BED FROM FRIDAY
MORNING UNTIL MONDAY MORNING. THE DOCTOR TALKED TO
ME TODAY ABOUT MY HEALTH. HE BASICALLY TOLD ME THAT
ADDISON’S WOULD BE THE DEATH OF ME. GREAT TO HEAR, HUH?
KEEP A POSITIVE ATTITUDE ABOUT IT. THAT IS ALL THAT HAS KEPT ME GOING.

#11

Hi my name is kelly and I have a blood pressure question also I was recently put on double med florinef 0.2mg for low blood pressure. because I was so orthostatic I was falling down and I ended up fractureing a bone in my leg. now I’m noticing that by the end of the day that foot is so swollen that it’s 3x it’s normal size. I don’t know if I should call my Endo or my Ortho any help would be wonderful
kelly

#12

KELLY, IF YOUR BONE IS FRACTURED, YOU SHOULD SEE AN
ORTHO-----MAINLY TO MAKE SURE THAT IT IS SET RIGHT.
I CAN TELL YOU THAT BECAUSE I AM SITTING HERE WITH A
HAIRLINE FRACTURE IN MY RIGHT ANKLE. I REALLY DO NOT KNOW HOW I DID IT EITHER. I DO HAVE OSTEOPORIS, THOUGH, SO THE DOC SAYS THAT THIS IS PROBABLY JUST
THE BEGINNING FOR ME WITH FRACTURES.
JUST HANG TOUGH AND THINK POSITIVE!!!

#13

Hey guys, So I guess that the predisposition to fractures might be from the cortisol zapping some of the calcium from our bones…I think. I read earlier in this post about stress doses. If I am having a stressful day, physically, mentally or emotionally, I will take extra cortisol. Whether it be 5, 10 or 20 mg extra. I take this depending on how my body is responding to the situation. If my adrenals worked this is how they would be reponsing to the situation. If I don’t take these extra doses, I become dizzy and nauseous. However, a lot of times the term stress dose is used by the medical community for a severe injury and they are talking in the 100-300 mg extra range for these types of situation, ie car accident, broken bone, etc.

I am so sorry that you guys are dealing with high blood pressure. I wonder what would happen if the florinef was backed off a bit instead of adding a BP med? I figure it is all about balance. If I am retaining a bunch of water weight and my hands swell, I cut my dose in half for a day or two and it seems to work okay. If our kidneys were getting the right messages they would be constantly regulating our blood pressure for us, depending on how much we sweat, our water intake, our electrolyte balance. etc. But they are not, and everyday is a bit different. All I try to strive for is balance and feeling somewhat close to normal.

#14

Hi Alison I have lived with Addisons for 15 years now. For the first seven years I was fine on Hydrocortisone only , then went into crisis and had Florinef Added which for another eight years I got by pretty well, then like you my blood pressure sky rocketed 172 over 114. My Consultant a Dr Vinod Patel halved the florinef tablet I felt a bit rough and then he decided to take it away all together and within a week I was admitting myself in Addisonian crisis I had lost too much fluid too quickly and eventually got my emergency 100mg intravenous hydrochortisone. I came out of hospital on 60 mg of Hydro for six weeks and just half of a floinef daily, I picked up slowly the 60mg daily was like having a furnace roaring inside with loads of energy.The dose of Hydro gradually reduced now at 25mg daily was on 30mg

befor. Blood pressure down some and Dr Patel would like me off Florinef but I know my body can’t hack it, so we are agreed to go back in Feburary to look at blood pressure and sodium levels. Therefore it is possible to alter high blood pressure by cutting back the Florinef but it is quite some journey. I live quite a Stressful life and feel this does not help, I am considering changing a few things in my life that might also help. Dr Vinod Patel can be contacted through George Elliott Hospital Nuneaton Warwickshire, on 02476 351351 you should talk to your GP and Consultant, give him a ring , my name is Lynn Lodge Good luck and Happy New Year