Hi just wanted to say hi to everyone and to see if anyone could shed some light and help me.... (warning, its a long one! Sorry!!) For as long as I can remember my BP has always been 90/60, apart from when I was pregnant and even then it didn't go about 110/90!!
I have Addisons Disease which is an adrenal insufficiency condition, and when first diagnosed I was also put on fludricortisone to stop my BP from dropping too low as I used to get attacks of POTS if I stood, turned or moved too quickly. But then in 2019 I had injections put into the base of my spine and I had a bad reaction, my BP flew up to 253/176 no word of a lie, I have the pics of the monitor somewhere! I spent the day in hospital with them pumping me full of BP drugs to bring it down. They managed to get it down to 158/117 and sent me home with medication and asked to reduce my Fludro but to keep an eye with the GP incase it tanked back down and I needed to go back on it. Unfortunately, after a couple of weeks I had to come off it altogether as it never came down, over the years I've tried many inc ramipril, and then most recently I was put on losartan which seemed to work from last spring to just before Christmas, still higher than it was before, but steady at 138/101 ish. Over Christmas I was really poorly, started with COVID then the flu and then a chest infection, my BP shot back up to 268/167, I couldn't move without my head pounding and feeling like something was going to explode out the side of my temple! Now I'm on amlodypine and Losartan. Its taking longer to work, its still usually hovering around 160/113. I get palpitations, irregular HB, my pulse is always over 110bpm, whereas before it was never really higher 68/75 even during or after activity as I was always very active until I had a slip disc and impinged nerves that got excruciatingly worse, and osteoarthritis in my pelvis as a result and also in my knees, now I'm not as mobile. I've also got Autoimmune thyroid disease, hemiplegic migraines, and a functional B12 deficiency.
Do you think my other conditions are impacting my BP even though they never have in the past? I'm lost amd fed up of not being able to breathe, feeling like my heart is going to explode out of my chest amd like my head is going to explode if I stand up or walk to quick after standing because of the sudden pressure build up.
Thank you for reading, sorry its a long one 😊
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Horsecrazylady79
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Hi Horsecrazylady79, it sounds like you have a lot going on there. Sorry but I think you need evaluation by a doctor as it seems a bit complex to get answers online. You could do no worse than get everything tested and sit down with a professional who can evaluate what’s going on. That’s the trouble with the medical profession not taking sufficient care over treatment of thyroid disorders, we then don’t trust them to care for us in other regards. You should at least get proper advice on blood pressure and heart rate. Wishing you all the best at getting an appointment and a F2F with a GP.
It might certainly be worth checking out if your thyroid and key vitamin levels are optimal.
So what were your latest blood results and what thyroid hormones are you taking?
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3?
Have you tried or are you strictly gluten free? Some Hashi people also need to remove dairy from their diet.
This is indeed complex as others have said. Both forum members above make very good recommendations.
In addition-
For the moment this is the only question I can ask - What were the injections that preceded this rise in BP. Why have the doctors not addressed this or given some explanation?
Obviously the timing means that you have linked these two things, and I have absolutely no reason to doubt you.
If you have autoimmune hypothyroidism better known as Hashimoto’s, there is the possibility of Hashis swings, but that wouldn’t necessarily explain everything. Addison’s (adrenal) there are links between the adrenal gland and thyroid. When a thyroid starts to fail the Adrenal gland can go on overdrive to try to prop up the compromised thyroid.
Here comes the advice that I think may help you get towards an answer.
Not sure if you have started reading round to get self-advocacy yet, but I think you are going to need to . Your health straddles more than one condition- very important to identify everything as everything will play it’s part.
Lived experience means exactly that and I am not sure if you will find an exact match within our ranks and even if you were able to, that might not necessarily apply to you.
We can try and help you unpick this, but ultimately it will be you that ties it back together again, and makes sense of it all. You will become your own expert, and we will be just extras in the story.
This could be a long road and all I can say is you need to address all the variables one at a time to try and work out what the heck is going on. And there does seem to be a bit doesn’t there ?😱
Firstly this may seem irrelevant at this stage, but if you can cobble together a decent bio from a few of your posts and pad it out in a timeline, this will help people trying to discuss your issues with you going forward. This is where people go to try to get a handle on your situation and boy it saves a lot of typing!
Others reading your lived experience may gain insight into their own situation and this could help not only them but you as brainstorming progresses.
Keep an eye on your profile and tweak it as more stuff is understood, or things happen. I have a profile that you can click on. If you go to my face click on it, it will take you to my profile and my bio. A statement is good its sentiment, but we need facts and detail to offer any advice from a lived experience perspective.
I’m sorry I can’t offer much else at this stage but we need to know what that injection was, what it was for and why doctors have been unable to give an answer.
The injections shouldn't really have affected my BP that much, they were nerve blocking injections for the impinged nerves and slipped discs in my spine (L5 & SI1) but they think I had a reaction to whatever was in them which is odd as I have steroid injections in my knees regularly and had for a few years before the one in my back, amd they've never affected me in any adverse way. And yeah the reason they linked it to the injections was because I was hooked up to monitors as a precaution due to my addisons, I'd already taken a doube HC dose 30 mins before the procedure, and within twenty mins of them doing the injections, my BP didn't just start to rise slowly, it literally shot up from 90/60 to 130odd/ 90 then over 200/ 130odd then just kept going! 😳 they even discussed with an anesthesiologist about putting me to sleep for a bit tonsee if it would come down but he didn't take that idea much due to my addisons and how quick it went up 🤷🏻♀️
Oh, that is awful. I suffered latent BP as well that cultminated in a TIA/stroke (immensely scary) but BP now normalised to the extent I am practically off all BP modulators (just daily 50mg Losartan). My saving grace (I think) has been Active Edge Cherry Juice. …. active-edge.co.uk/blogs/wel...
You don’t mention if your Addisons is supported by HC (or equivalent) or just the fludrocortisone?
Presume you mean Hashi? , and that can involve huge amounts of chronic inflammation. Have you recent thyroid labs to share (including ranges (numbers in brackets)?
Have you looked at secondary high blood pressure also called secondary hypertension?
I have a relative with pituitary issues and they experience secondary high blood pressure. Similar to what you describe with episodes lasting long periods of time and meds making little or no difference.
If you're under the care of an endocrinologist it may be an idea to mention secondary hypertension to them.
Thank you all for your replies. Charlie-Farley I have been on this road a long time, it was Prof. Wass who is a top endo with special interest in addisons and thyroid issues. He is the clinical lead on the Addisons Disease Self Help group. It was he that diagnosed me as having Hashi's as before that the GP was just keeping me on 50mg Levo and telling me I was 'subclinical hypo' even though my TSH was regularly swinging between 5 and 12! He upped my levo to125mg amd put me on 20mg T3 and 25mg DHEA. I felt a lot better after that I can tell you! Unfortunately it didn't last, but he did advise me that I needed to become my own advocate and to be a patient expert as I have 2 Autoimmune diseases and a rare neurological disease, meaning that with the addisons, I have 2 rare conditions. Even though they're called Hemiplegic migraines, they aren't actually a migraine but a rare neurological disorder that can present as a stroke and cause strokes. It was also he that advised that I keep my thyroid suppressed to stop the Hashi swings he thought I'd been getting.
I have primary adrenal insufficiency as Prof. Wass discovered that my adrenals have atrophied (for years my NHS endo tried to tell me it was because I'd been taking morphine! He said no way, not with my numbers. And when he ordered a CT of my abdomen, they discovered the atrophy)
I was only on HC for years but it was never fully under control, we couldn't get the dose right, especially not after my BP shot up and I had toncome off my Fludro. 18months ago, my new endo (I moved) suggested we try prednisolone and HC, so I know take 5mg pred and 5mg HC on waking, 5mg hc in the evening around 4-5 when I feel it dip, then 2.5mg around 10 before bed as we discovered it helped me sleep. I updose when sick as per sick day rules and for any surgery I have.
SlowDragon I do need to check my estrogen as I've just started DHEA again, I had a total hysterectomy in June 2020 as I had raised CA125 markers, I suffered badly from endometriosis and ovarian cysts that had resulted in several surgeries, including emergency ops. That and my family history suggested the best option for me was to get it all gone and again, I feel much better that I don't have that to go through as well anymore!
I'll check through my files tomorrow and see what my last bloods say, I do know that when I ended up in hospital last month, my cortisol was only 173nmol/l and that was while I was double dosing for sick day rules, the ED consultantput me on a HC drip straightaway, but the endo I saw while I was in took me off it, saying I didn't need it and she doesn't take notice of the cortisol numbers when someone is on replacement steroids because they're going to be low anyway!! I just sat there stunned! Oh and she tried to tell me to lower my T4 and stop my T3 because my TSH was suppressed! It took me a minute to get over what she was saying, first thing I blurted out was do you know what you're doing, or are you just a diabetes specialist endo!? Her face ha! "Well considering how long I went to school for and you didn't, then I guess I know more than you!" To say I was stunned would be an understatement, although my reply- yeah but I live it every day, as Prof. Wass told me, I had to become my own patient expert and I probably know more about Hashis and Addisons than you ever will.
The look of disgust she gave me, I still see it when I think about this conversation, she said I don't think so, numbers don't lie.
My answer....."No joke, its only almost killed 4 times and has stopped me breathing once.... what's your numbers?"
Then I politely told her to leave the room and not to come back, I discharged myself not long after, my endos secretary when I rang to ask if I could see him was disgusted and shocked when I told her, she's going to try and find out who it was from my notes before I see my consultant and let him know. Like she said, she's lucky that she didn't make me more ill or worse!
Your original question was "Do you think my other conditions are impacting my BP?'
Yes, as said above my BP shot up, I had a TIA/mini stroke followed by numerous episodes of kaleidoscope vision. This is associated with Hemiplegic Migraine although as you point out there doesn't have to be a migraine involved. During these attacks I also had severe light and noise sensitivity. Fortunately I haven't had an attack since last September and my BP is now a steady normal.
I don’t know if this is any help to you Hcl79, as we’re all v. different but I have all three, Hashimoto’s, PA/B12def., (probably hereditary - Nordic/Austrian descent) as well as Addisons, and can totally identify with your frustration……..
Too long a story to detail but, after an excruciatingly painful back injury while exercising brought on constant, dreadful nausea, Addison’s was suspected by two doctors in May, 2020. I was then X-rayed, scanned and tested in a practically empty hospital, and eventually treated over 4 days for severe dehydration. Only later was it discovered that cortisol was never tested!?
Following fruitless discussion/gaslighting with my surgery, I turned to the experienced, highly qualified, local herbalist and began taking his Adrenal Tonic, also increasing B12 self injections for a while. It all worked really well and an unexpected eventual result was that less thyroid medication was needed 🤗
I only realised afterwards that I’d probably experienced a similar attack of Addison’s some years ago, only second time in a long life, a doctor had to be called.
As a matter of interest, I read that John F. Kennedy had a similar medical history, AD being diagnosed in London, after which medication was kept in various locations in case of an emergency.
Hi - I have Addisons too plus all of the autoimmune conditions you have. I very much empathise with what you are going through.
I'm on low bp tabs (Candesartin) for chronic migraines and this is about to change as my bp is being pushed down too low. My bp is usually on the low side of normal anyway with the Addisons (I'm on fludro too) .
What dose of Fludro are you on? Have you had your bloods done recently and do you have the results. If you don't and if it's done through the hospital then you can put in a request into medical records of the Hospital to get them.
Polyglandular Syndrome is complex to deal with especially with having a number of the conditions. I suggest that the first port of call is your Endocrinologist. The problem for us is that regular docs don't know how to handle a patient with Addisons, let alone the rest of the gang.
I'm mot on fludro anymore, I had to be taken off it because my BP was too dangerously high and the whole point of fludro is to keep the sodium/potassium balanced so that your BP doesn't drop further.
From my Covid experience it definitely caused my pulse to sky rocket just sitting still it would be 130 bpm and walking was horrendous and in 4 days I lost 13 pounds … On my own I decided to temporarily reduced my thyroid meds to see if my pulse rate would drop (it did not) took about 3 weeks for pulse to settle down but I suffered for months with erratic pulse rate and now internal tremors that get pretty aggressive it feel like Im sitting on a massage chair…. agh… covid blows.
A few days after my second Covid vaccine, I started blowing blood vessels. GP found my blood pressure was through the roof, although it had been normal all my life, including 3 pregnancies. I am now on my 5th type of BP medication, and none of them have done a thing. My heart rate has gone from a steady 70 to over 105 sitting still. After a fall on the ice, cracking my shoulder blade, the hospital found my BP to be 222/195, but they sent me home and told me to take paracetamol....
I have been refused a cortisol test, and an adrenal test, despite only having one adrenal gland.
If I mention the vaccine, the shutters come down, so thanks for your post @Batty1. I am now researching Hawthorn extract, I have lots of Hawthorn trees, but will not go and just nibble them, I will buy it.
This is just a shot in the dark, and I'm not a doctor...
Have you had any investigation of your kidneys? Narrowing of the blood vessels going to the kidneys can increase BP.
The adrenal glands sit on top of your kidneys. In Addison's Disease the glands atrophy, as yours have. Has there been any damage to your kidneys themselves for any reason? Have you had any MRI or other scans done on your kidneys? It would be good if you'd had an MRI of your kidneys done with contrast so that the blood vessels in and around your kidneys could be seen.
There is a relationship between the kidneys and hypertension. The problems can go both ways - hypertension can damage the kidneys, and kidney damage can cause hypertension.
All I know is when they do bloods they say my liver is fine, I don't even know what blood tests I'd need for kidney function other than U&E's which have always come back 'normal' though we all know what that means 🙄 I can't remember when I last had a full blood count done. Might have been while I was in hospital as I certainly looked and felt like a pin cushion! I'll contact my surgery tomorrow and see if I can get a print out of the tests done in hospital and I'll post them.
I'm due to see my endo soon so tomorrow I will also contact the booking dept and find out if mu appointment has been made yet.
This is exactly what happened to me during the pandemic. My stress levels rocketed for all the expected reasons. I suspected high cortisol which I had tested (4 x saliva) but by the time I tested the symptoms were not as bad. The result came back with my morning reading high but not sky high. However the following readings were not coming down as they should. My GP wasn't interested as it wasn't high enough. They only treat Cushings or Addisons. Since then I have been on BP meds, increasing all the time. My racing heart has gone back to normal but I did have to reduce my T3. Now my FT3 sits in the middle of the range and any increase reflects on my heart rate.
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