Persistent Low Blood Pressure

First topic message reminder :

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

Hi Audrey

There is a lot of good info on my favourite site here:

http://www.patient.co.uk/doctor/adrenal-insufficiency-and-addisons-disease

Hi Amanda

Yes, we who viewed your thyroid hormone levels did think you might have a low thyroid function problem. Did you ever manage to discuss this with your endo? Or were they maybe the wrong sort of endo? (Tell me about it! I've been seeing the wrong sort of endo for many months!!).

Hope you both get some useful help very soon.

Love from Tigerlily xxxx

Hi Tigerlily
I've not discussed it with Endo as yet. I've sent her all my readings and as yet have heard nothing, seems she can't communicate if her secretary is on hols !!!!! There are 3 other secretaries in the department !
Hers is back on 17th so I will be copying my last email together with a new one asking about growth hormone test, FHH test ie does she have any idea how long and some new points about hypothyroidism and reflux. I'm sure she won't have a Scooby doo about anything but I need some answers and as my next appt at that dept isn't until 11/9/14 I think the least she could do is answer my emails.
Yes Audrey any improvement would be good, as would ruleing out pit problems and FHH.
If I have to deal with hpth and thyroid I will get through that the others I'm not so sure how I'll deal with them.
Got a very reassuring text from a member of my family the other day, when she asked the what the situation was re all of this I told her they were testing growth hormone as it was showing a problem, she said oh for gods sake all this money wasted, surely if there was something wrong with you they would have found out by now !!!!!        
I didn't say a lot back to her and I hope she never finds herself in the situation we are in. All I can say is unless you go through this you really don't understand what a struggle it is.
Amanda xxxx

Amanda, don't let that relative get you down! It's not worth even thinking about! Before my parathyroid surgery, I was talking to a relative of mine about my terrible painful, miserable symptoms. He said to me, "Yes, we all have pain as we age." I almost lost it, but I was strong and let if roll off my back, but I just couldn't stay perfectly quiet. I said, "Oh, if you only knew."

Stay strong and keep insisting on those labs!!!

Thanks for the link, Tigerlily. I haven't checked it out yet, but I will very soon. I am in full research mode this morning! I feel just like I did when I was trying to get tested with HPT. Although I hate being sick and in pain, I LOVE these challenges!! I am about to start a new thread regarding my latest lab results. I have been researching ever since I viewed them about an hour ago. I think we're finally getting somewhere!!

Audrey