Persistent Low Blood Pressure

Well, as I mentioned in a previous thread, it would seem that we are getting closer and closer to determining what it is that has been causing all of my remaining symptoms and also the new symptoms that have arisen since my parathyroid surgery. Yes, some might still be hanging on from the HPT, and some might be new due to the recovery process, but I think many of them are related, and we will soon figure out just what is causing them!

I checked my blood pressure today. It was 98/57. I checked it several more times to see if that level would persist. The readings I got were 93/63, 103/58, 102/59. I thought these levels were acceptable. However, my pressure has been staying rather low, with diastolic numbers in the 50s and even 40s for a few months. When it was in the 40s, I was taking blood pressure medicine. My PA thought I needed it because my BP is always so high at my appointments. We know all about white coat syndrome, and she suspected that was my problem, but she was concerned and wanted to try to bring it down some. When my pressure hit 94/45, she decided to stop the medication. Probably a very good idea! I have not been on any BP medication for a few months now, so that is not the cause at this time. I've been on the internet looking for causes of low BP. I've come up with thyroid issues, parathyroid issues, adrenal insufficiency, diabetes, and kidney failure. I am hypothyroid, for which I take medication. We know I did have hyperparathyroidism. I just convinced my PA to test my adrenal function recently, but she wouldn't go for the 24-hour saliva cortisol test. She just ran the regular cortisol check, which was normal; although, much lower than it was when tested 3 years ago. My glucose is currently at 97. Normal is 65-99. This is worrying me. Eight years ago, my glucose was at 112. Over the years, it has dropped. It was 89 a few months ago, and now it is at 97. I'm hoping it is not being affected by the D-mannose I'm taking for the recurrent UTIs. I would hate to have to stop taking it. Some of these symptoms were with me long before I started taking the D-mannose, so I'm praying my glucose is not playing a role in all of this.

I called my PA today to see if she would check my potassium and magnesium since I started taking a diuretic a couple of weeks ago. I have taken diuretics on and off for about 15 years. I started taking it because of all the edema I had in my feet and lower legs. My doctor didn't think I needed it because my blood pressure was always around 100/60, but I couldn't stand the edema. She couldn't figure out what was causing the edema, so she finally agreed to the diuretic. During those 15 years, I would take it when the edema because bad, and when it looked good, I would stop. At my last appointment with my PA on April 24th, she noticed that the edema was again looking rather bad. I told her it had just started up again about a week earlier, and when I tried to take the diuretic, my feet and lower legs cramped up something terribly, and I had to stop. I had not had trouble with this edema for about a year or so. It was very disappointing that it was back. Well, when I called today to ask about getting my potassium and magnesium tested at this time, the nurse started asking all kinds of questions. She was very concerned that I started taking the diuretic without consulting them first. I explained that this has been going on for many years, and nobody could ever figure out why, so we just treat it with the diuretics when necessary. She asked if I had checked my blood pressure lately. I had not checked it for weeks, but this morning, something made me go check it. I told her what it was. She was VERY concerned. She asked me what type of diuretic I was taking. I told her it was HCTZ. She asked me if there was anything else in it beside just the hydrochlorothiazide. I told her as far as I know, it's just hydrochlorothiazide. She asked me to read the bottle to her. I did. All it said was hydrochlorothiazide. She told me she was going to talk to my PA and get back to me. She wasn't so sure I should be taking a diuretic with my BP as low as it is. So I am now waiting for her to call back. She said my PA just might want me to come in. I don't know why. She could just tell me anything she wanted to on the phone, but if they want me to go in, I will. She will test my BP there. It will be high, as it always is. She will see that the edema now looks GREAT. She will order the regular bloodwork to check my electrolytes, and I will continue to suffer. Although, if she puts her thinking cap on, and she just might, because she usually does, she might want to run that 24-hour cortisol test and check my blood for possible sepsis.

I have been telling my doctors for years that there is no possible way bacteria can bet getting into my bladder from the outside of my body! No possible way!!! I told them I was wondering if there was any way the bacteria is entering my bladder from the inside of my body. A friend of mine agreed that if bacteria was in the blood, it could cause a bladder infection when it moved through my kidneys and bladder. I asked my PA if she would test my blood, but she said the medical world would think she had lost her mind if she tested for this, since I was not sicker than I was. She told me that if I did have any e-coli in my blood I would be very ill. I have been very ill now for years! Over the past few months, many times I feel feverish and have chills. I am not sure how much sicker I have to be before we start running every test we an think of to try to solve this mystery! I do think, though, that we are getting VERY close now! I think between the internist, PA, urologist, neurologist, endocrinologist, and ENT doctor, we WILL get this all figured out soon! I am putting my money on my PA and the neurologist to get the job done!

I will keep you all posted.

Audrey

Hang on in there, Audrey - you have just got to get fixed soon.

I expect you know that thiazide diuretics lower blood pressure - here is the wiki link with that info:

http://en.wikipedia.org/wiki/Thiazide

I will do some more research on this.

Love from Tigerlily xx

Fingers X'd for you Audrey you really deserve to get this sorted once and for all.
Lots of love Amanda xxxx

Ooops, Audrey, there is a direct link between hypercalcemia, hyperparathyroidism and thiazide diuretics:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2424800/

Love Tigerlily xxxx

Another link, Audrey - see half way down about drug-causes of hypercalcemia:

http://www.patient.co.uk/doctor/hyperparathyroidism-pro

I knew I'd seen thiazide diuretics mentioned somewhere in connection with HPT.

Love from Tigerlily xxxx

Sorry to keep on at you, Audrey - but did you check out the possibility of diabetes insipidus? There is a connection with kidney function and vasopressin. I only know about this because my husband was diagnosed a few years back with SIADH. (syndrome of inappropriate anti-diuretic hormone - it's a real brain twister to get a handle on, that one - but vasopressin was involved in SIADH, plus peeing a lot). 

http://ndt.oxfordjournals.org/content/15/12/1903.full

Although a bit complex for me, this has some useful information in it.

Perhaps Nancy will be able to make some sense of it in connection with your situation.
She has a great medical brain!

Lots of Love from Tigerlily xxxx

Thanks, ladies.

Yes, Tigerlily, I am very aware that diuretics can affect the calcium and PTH levels. When my PTH was first found to be elevated, I went into serious research mode, and I found this. In order to determine whether I had an actual parathyroid problem or if my levels were askew due to the diuretics, I had to get off of them completely and them run more tests. Thanks for the links though. : )

I am going to run diabetes insipidus by my PA on Thursday at my appointment. Her nurse just called and asked me to schedule an appointment ASAP.

My PA wants me to stop the diuretic immediately because of the low blood pressure. I told the nurse that I have been taking this diuretic for about 15 years on and off, and I have NEVER had this problem with my blood pressure. I told her I think there is something else going on with my body causing this low BP, and we need to figure out what the heck it is!!! She said my PA wants to see the edema in my feet and legs. My PA HAS seen this edema in my feet and legs for about 10 years, since I first started seeing her! Seeing it again is not going to help her figure out what is causing it! I told the nurse that unless the PA has some new ideas up her sleeve, coming in for a visit isn't going to do much good, but that I would be happy to come in and discuss things with my PA, because I there are other symptoms I need to remind her of. I have been dealing with this edema for so darned long! I've had about 15 doctors over the years try to figure out the cause. Nobody ever could. All I know is that it all started 33 years ago when I had that wood stain incident! I know that darned stain has seriously screwed up my body!

So I will go see my PA on Thursday, and more than likely my feet and legs will be all swollen again, and I'll have to wear long pants on a 90 degree day! So sick and tired of all of this $#!+!!!    I'm tired of telling my story to my doctors over and over and over again, just to have them give me more meds for symptoms!! Why can't they figure out the cause of any of my symptoms?! Why can't they put them all together and figure it out?! If this all turns out to be 1 of the diseases or disorders I have been telling them I think it is, I think I'm going to stop seeing doctors altogether!!!! I'm starting to wonder who needs them?! My grandmother lived to be 87 and never saw a doctor in her life! And she was a nurse!!

VERY frustrated right now!!!

Audrey

Tigerlily, I forgot to mention that, yes, I was also aware that the diuretic would lower the blood pressure.  That is why I had trouble convincing my doctor 15 years ago, to prescribe one for the edema, but, like I said, during all of the 15 years I've taken a diuretic on and off, I have never had my pressure drop this low.    There is definitely something else going on here!    Hopefully, we are getting closer to figuring out what the heck it is!    Well, maybe I should say, I  hope THEY are closer to figuring out what the heck it is.   I have 4 possibilities in my head already.

Audrey

I knew you'd have all those bases covered, Audrey.

Like you, I think it is all connected somehow.

Good luck and keep us posted.

Love from Tigerlily xxxx

Hi Audrey

 I think your Grandma was a very smart lady.lol  I was thinking about the uti's and swimming pools, you have one and so do I. I know you keep yours very clean and I do too, but a couple of years ago when I took antibiotics for about three months it was in the summer. But my last one was last March so hell I guess that blows my theory, on maybe the pool. Okay my brain is fried. Anyway I am glad they are getting closer to figuring out what is going on.

Hi Kathi,

Yes, we used to think it was very strange that Gram wouldn't see a doctor, but through the years we all started to look at things a bit differently.

And, yes, we do have a pool, but I just noticed something the other day. I have been getting 6 UTIs a year for the past couple of years. I only had 2 total during all 6 summer months of those 2 years. Seems like I just don't get them as often in the summer. I'm not sure if this summer will be the same. We'll see. This is why I started thinking that maybe I needed some vitamin D to boost my immune system to fight these things. Anymore, I just don't know what to think. I'm tired of thinking.  

Audrey 

Audrey and Tigerlilly,
      As I was reading your post Audrey, I was thinking about diabetes insipidus but also thinking with your BP readings being as low as they are that I don't think a BP med would be a good thing. 
      Let us know if you get tested for D Insipidus and how it comes out and good luck. 

Nancy

Thanks, Nancy. I'm not taking any BP medication now. I stopped taking it on April 11th. This is why I'm so concerned about the low pressure now. I have been taking a diuretic for 2 weeks again to get rid of all the edema in my feet and lower legs, but I've taken this on and off for years and never had a problem with my blood pressure dropping like this. I still think I have Addison's, and I think in time the doctors will realize this. I will be discussing quite a few things with my PA on Thursday.

How are you feeling?

Audrey

Hi again, Audrey

I do my best thinking at about 4am these days - I hope you don't mind a few more thoughts.

Looking at it simplistically: edema in legs and feet is usually connected with kidneys; the kidneys are connected with blood pressure as people are first given a diuretic to lower high blood pressure when it first starts; you have UTI problems which also involves the kidneys; you've felt better most of your life recently when outside in the sun - and the kidneys are the place where one stage of the conversion of 25(OH) Vitamin D to the bioactive form of 1,25(OH)2 Vitamin D takes place (the liver is the other place where the first part of this conversion happens).

Due to a kidney function problem, some people don't easily convert the 25(OH)D to the 1,25 form in the kidneys, and this leaves them with a lot of the unconverted and non-bioactive form of Vit D floating about in their system. I expect this all gets excreted eventually by the kidneys, IF the kidneys are functioning well enough to do this efficiently.

For comparison, there is a similar thing that goes on with people who have difficulty converting thyroid T4 to the bio-active form of T3, so the unconverted T4 gets changed by the body into "reverse T3" which is non bio-active, and which can build up in the body until it is excreted by the kidneys.

I wonder if there's a chance that you are severely deficient in the active form of 1,25(OH)2 Vitamin D (which might explain some of the pain and problems that you still have despite the parathyroidectomy) and you have a lot of only partially converted 25(OH)D remaining in your system because your poorly kidneys are (a) unable to complete the conversion to usable 1,25(OH)2 Vit D, and (b) unable to excrete it as well as they should? Maybe this builds up after a time and then you get the UTI from it?

And the damage to your kidneys could be connected with the wood stain incident. I can't remember the details of that (HPT brain fog) and you obviously didn't actually drink the woodstain, but if you got it on your skin it could have got into the bloodstream. And the kidneys are the only place that the body could excrete it from, so maybe the kidney damage was from the wood stain incident in the first place, and later made worse by the HPT from the adenomas.

I've found two more interesting links that I'll put in a another post after this one.
I don't want to navigate away from this window and lose this post!

Just some thoughts, Audrey - Love from Tigerlily xx    xx

Back again, Audrey:

http://www.patient.co.uk/doctor/renal-tubular-disease

This is probably a total long shot, but the Type 1 version of this is listed together with mention of HPT and chronic UTI's.

The other link was about wood stain poisoning, but I expect you did the research on that some years back.

Hope you have a good meeting on Thursday - let us know how it goes.

Love and Cats        from Tigerlily xxx

Wow, Tigerlily, thank you so much for taking such an interest in all of this! I do appreciate it so much! I will be discussing all of this with my PA tomorrow. That is, if I don't end up in the hospital before that time. Things are not looking good here. Or, maybe they ARE, depending on how you look at this.

Late last night, I noticed someone on the Facebook page asking if anybody had had parathyroid surgery and now felt they might have Addison's. It was so late, I wasn't going to comment, but I have been having so much trouble, and I've been suspecting Addison's for some time now. It was very interesting. There were some links posted on there, which were very interesting! I was up til 1:30 this morning reading and researching further. I am now really leaning toward Addison's.

I did not take the diuretic last night, as my PA ordered. I guess you might all be thinking I'm a bit stupid for not doing this sooner, but, as I mentioned earlier, I have taken HCTZ and Lasix alternately over the past 15 years, and I have NEVER had a problem with my BP dropping like this, so I never expected this to happen. I had been checking my pressure just about every day for a couple of months when my PA thought it would be a good idea to start me on BP medication, due to the elevated BP at my appointments. Even though we both knew it was a case of white coat syndrome, she was afraid my pressure might be going way too high at other times also. She ordered a 24-hour BP monitor test, but I couldn't find any hospital that would perform the test! So I started the BP medication. My pressure did drop very low at that time, so I stopped the medication on April 11th.

This morning I expected my BP to be at least a bit higher due to the stoppage of the diuretic. It was not. When I sit down to take my pressure, I always take it 10 times. This might sound a bit odd, but I figure if I'm supposed to sit for 10 minutes before I take it, and it takes about a minute to take it each time, why just sit there doing nothing? So the first reading is usually the highest, since I have just sat down. This morning that first reading was 102/58. I knew I was in trouble. It eventually dropped to 72/51 by the fifth reading! The rest of them averaged around 100/60, which is not that bad, but still considered low.

I came in here to answer a couple of emails, and then I thought of something. I read that people with Addison's tend to have a big BP drop when they stand up from a sitting position. So I went back in and rechecked mine. I took it sitting and then stood up and took it again. I repeated this 5 times. The standing pressures were definitely lower, but I don't think they were drastically lower. I did have a standing reading of 95/49 and one of 76/58. I think I need help.

Normally, on Wednesday I am out and about running errands. I am afraid to leave the house today. One of the places I normally visit on Wednesday is about 10 miles from here, and I need to get on the big interstate highway to get there. I will not be going there today. I might get myself ready and attempt to get to a few places here around town. I REALLY wanted to get some ink for my printer today, so I could take some Addison's information with me tomorrow to my appointment. My PA is one of the few doctors I see who will actually look at material I take in. She is actually interested in seeing me get well again.

I guess I'd better start getting ready here. By the way, Tigerlily, thank you so much for the cats! Cats make EVERYTHING better!!    See there, you put a smile on my face again!

Onward I go, inching my way to better health! I hope you are all doing the same!!

Audrey

Oh Audrey you do need to be careful with your blood pressure that low, look after yourself and I hope your PA can shed some light on this for you.
Sending you love & cats         
Amanda xxxx

Audrey, I really hope you get some answers tomorrow and can move forwards to a proper diagnosis as soon as possible. Take care of yourself and best of luck for your appointment tomorrow.

Love, hugs and cats               
Brigitte xx

Thanks, Amanda and Brigitte. Wow, look at all of those cats, hearts, and other good things up there! How can I possibly have a bad appointment tomorrow with all of those?!    So much love and good stuff coming my way! I am very grateful and feel so blessed! Thank you!

Well, I did go out to get some ink for my printer, pick up a prescription, get some groceries, and go to lunch. It was actually sort of frightening, wondering if anything would go drastically wrong while I was out. I did feel weak and a bit lightheaded and dizzy, but it wasn't too bad. It all went very well. I am now totally wiped out, but still functioning!

My feet are starting to swell up again now that I've stopped the diuretic. It's bad enough feeling like crap, but having to look ugly too makes this an unwelcome double whammy!   

I am going to get all of my material together now for my appointment tomorrow. I need to print several things to take with me.

Thank you all for caring. I will keep you posted about the appointment.

Audrey    (I'm putting the little drunken emoticon here because that's sort of how I feel.)

Sending lots of good luck for your appointment tomorrow Audrey, you deserve some answers x

Thanks, Mel. I've just about got everything together now for the appointment. I've got to make my list of questions yet, but that won't take long. I thought after I was finished fighting for the HPT diagnosis, I would be done fighting. I guess not. I'm revved up and ready to go again!   

Audrey

Let the peeing begin! The 24-hour urine collection has begun. Not a major crimp in my day, just another small annoyance. As many of you know, it is the transporting of the goods that is the real challenge.    I just hope something will be revealed during the actual testing.

Blood pressure was very low all day yesterday, but looks almost normal this morning. Only 1 reading was considered low this morning. Although, my pulse is still rather low, staying in the low 50s. I am wondering something. Edema increases blood pressure, and I am having a terrible problem with edema. If my blood pressure is so low while I'm so full of water, would it not be even lower if I was not waterlogged? I sent my PA a short letter on Saturday. I posed this question to her. I am wondering if maybe I have actually had a condition that causes low blood pressure for years, but it's been masked by all of the edema. And, whatever it is that is causing the low blood pressure, is it also causing the edema? I do think thyroid malfunction is a real probability here. I also am still wondering about the adrenal glands as the cause. Hopefully, we will know soon.

I am also wondering something else, which I need to research. When I was trying to get diagnosed with HPT, I had a 24-hour urine test done twice, as mentioned earlier. Both times my urine calcium was normal, so those tests did not help me to get diagnosed, even though I did have the disease. I am wondering now if the same thing might happen this time while we're testing for urine cortisol. I'm wondering if you can still have adrenal or pituitary problems if your urine cortisol is normal. I will be hitting the Internet today in search of that answer.

I also read something the other day that I was not aware of. I still have a lot of trouble with acid reflux. I was blaming this on the HPT for a few years. I didn't realize that thyroid issues can also cause acid reflux. I guess I should have known this. I read that since hypothyroidism affects the muscles, it can damage the esophageal sphincter, allowing acid to back up into the esophagus. Maybe it has been the hypothyroidism causing my acid reflux all along. Interesting.

Audrey

Oooh Audrey
That is the problem I have which causes reflux for me. I have had this for about 10 years, maybe I've had thyroid problems that have caused this. I need to read up.
Sorry you still have puffy feet/ankles that's not fun but glad your blood pressure isn't quite as low today it you may be on to something about your thyroid not working properly being a cause !!!!
Have fun with your peeing  
Love Amanda xxxx     

Audrey I have been reading some articles and to think that instead of facing a huge operation to correct this stomach valve, it may be related to my Thyroid, all I need now is to get someone who knows what they are talking about Thyroid wise to check my levels out.
I have previously posted them and a few people thought they were highly suspicious.
You are a genius, big big hug.
Amanda xxxx

Well, I'm very glad my post helped you in some way, Amanda. I do hope you can get your thyroid levels all checked out and possibly find a cure for at least some of your symptoms, if not all. The way I look at it, ANY improvement at all is GOOD when it comes to my symptoms. I'm sure you all feel the same way. I would love to be totally cured of ALL of my symptoms, but I am very grateful for ANY improvement at all! Good luck!!

Audrey