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Appointment Went Well!

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Brigitte0
Little Audrey
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Post by Little Audrey Thu Jul 10, 2014 9:33 pm

Hi All,

I woke up this morning, fed my cats, and went in to check my blood pressure, which has been a great concern to me lately, as it has been dipping to systolic numbers in the 60s and diastolic numbers into the 40s. They were no different this morning. The lowest systolic number this morning was 97, which is much higher than it has been lately. The lowest diastolic was 47. I also have been having a LOT of trouble with edema. I have had trouble with the edema for over 30 years, but it has gotten worse over time. It looked really good for about a year, but about 2 months ago I started looking like a little blow fish again!

I have mentioned before that I have a terrible case of white coat syndrome. Normally, here at home my BP would be around 110/65, but at my doctors' appointments it would be around 185/90 or higher! It is ALWAYS that high when I visit this particular doctor, and I LOVE her, so this is very odd. Today at her office it was 110/60! I have NEVER seen a pressure like that at ANY doctor's appointment!

The PA thinks it is my thyroid that is causing all of these remaining symptoms of muscle cramps, muscle twitches, muscle weakness, tendon pain, headache, tingling of hands, arms, and feet, HORRIBLE fatigue, edema, joint pain, and I'm sure I'm missing a few. I had thought it was either the thyroid, adrenals, pituitary, or possibly Lyme disease causing these symptoms. She is going to run some tests for the thyroid and adrenals, and check for Lyme disease. I will be going for this bloodwork tomorrow, along with scripts from 2 other doctors. The list of tests is very long. I have a feeling I am going to be drained completely after they're done drawing this blood! Normally, this doesn't concern me. I have had 7 tubes of blood drawn at one time in the past. That didn't cause a problem. However, since I presently don't have much of a blood pressure AT ALL, I am not sure if this will cause a problem. I think I will explain this to the ladies there at the lab. I'm sure they wouldn't mind if I hung out there with them for a few minutes and maybe had some juice or something afterward. They know me well over there. The visit will be fun.  Smile 

The PA does not want me to increase the thyroid meds until we see the lab results, which will more than likely take at least 10 days to receive. In the meantime, I will continue to have practically NO blood pressure, be very dizzy, swell up, suffer from all of this pain, and be totally wiped out. Not looking forward to all of this, and not looking forward to wearing long pants in this hot weather, but when my feet swell to their biggest, I won't let anybody see them. I am going to ask them to rush these results at the hospital tomorrow. I don't know if they will just because I ask, but I'm going to anyway.

She also ordered a chest x-ray, which I don't think is necessary, and I really HATE being exposed to radiation if it is not absolutely necessary. I asked if we could wait til we see the lab results, because something just might be revealed that way, and I won't even need the chest x-ray, but she insists this is necessary. She was so good to go along with just about everything else I suggested, I really didn't want to argue with her. So I will be going for the chest x-ray also.  Crying or Very sad 

I asked her if there is anything I should or shouldn't be doing for the low blood pressure. She said to just drink a LOT of fluid and rise slowly from a sitting position. This still scares me. Today when I got out of my car and started to walk toward her building, I kept losing my balance. I looked like I was drunk! I was very dizzy.

This woman is so nice! She sometimes will give me a hug at the end of my appointments. Today she repeatedly rubbed my arm as she walked out. There aren't many doctors who are this caring. She is wonderful! I hope I die before she retires, because I will sure miss her if not!  Laughing 

As appointments go, this was a good one!

Audrey






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Post by Brigitte0 Thu Jul 10, 2014 10:07 pm

You have achieved a lot there today Audrey! I was thinking about you today and wondering how you were getting on. I'm pleased that the appointment went so well and I think you're lucky to have a lovely PA. (My brain's gone and all I can think of is that you have a lovely Public Announcement!!! What does PA stand for??!)

I'm sorry about your blood pressure, but if you take great care in getting up and don't rush about at all, perhaps you can persuade your mind to think that you're perfectly all right because you're taking sensible precautions. And obviously sit down after your blood draw to allow yourself time to get over it. You're absolutely banned from being in a hurry!

What's the chest x-ray for? Since you have to have it, I wouldn't let yourself worry about the small amount of radiation. If it's there to rule something in or out, it's a necessary part of your recovery, so must be bearable Smile 

Take great care of yourself and best of luck for your bloodwork tomorrow.

Love, hugs  flower   flower and  cat  cat  cat  cat 
Brigitte xx
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Post by Kathi209 Thu Jul 10, 2014 10:41 pm

Hi Audrey

I agree with getting a lot done today. How is your heart rate? My husband had to have a pacemaker put in do to a very low heart rate and dizziness . Even after the pacemaker he still would be dizzy but cardio doc said his BP is low and causing the dizziness so eat chips or something with salt geeee sometimes you can't win. He is better now BP not as low as before. I have some dizziness at times and my BP is climbing some.

   I am glad you have a good PA who is looking after you. My pcp is good to, but surprised me last March when I was feeling pretty rough and I ask if he could run cal/pth being I wasn't going to see endo till the end of May he said okay but that was all he was going to do. I felt like telling him hell that is all I want you to do. Forward we march on.    Take care Kathi

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Post by Amanda Lynne Thu Jul 10, 2014 11:06 pm

Hi Audrey it late and my brain is like poop today, I have the memory of a fly ATM but I'm glad your doc is doing something to get you sorted, about time.
Be careful about low BP when I was younger mine was v low (I was a tiny skinny thing) I used to fall over a lot when I dropped and getting up quickly was the worst thing. No rushing around take things easy.
Lots of love Amanda xxxx
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Post by Little Audrey Fri Jul 11, 2014 12:07 am

Thanks, Brigitte, Kathi, and Amanda.

Yes, it was a good appointment! The only thing that bothered me is that the PA and her nurse were both under the impression that I just decided willy-nilly on my own to start taking that diuretic a couple of weeks ago, when, in fact, the PA herself had mentioned me taking it again when she saw me at my last appointment. The nurse scolded me on the phone for taking it without consulting them first. I think they thought I was having this problem with the low BP solely because I was taking that diuretic. I know the diuretic can lower blood pressure, but, as I mentioned earlier, I had taken this particular diuretic on and off for about 15 years, and i NEVER had a problem with my BP dropping too low! Obviously, there is something else going on with my body. When I walked into the PAs office today, she said, "What did you do?!" I had to remind her that she herself who suggested I start that darned diuretic at my last appointment. Then she was ok about it. She knows I HATE taking medication of any type, and I would only take it if it was absolutely necessary. To make matters worse in pleading my case, though, I had taken pictures of my feet just before I started the diuretic. I had no idea i would need them to prove my case at that point, but my feet were just so freaking ugly, I wanted pictures. The problem was, when I changed the batteries in my camera a couple of months ago, I never changed the date in the camera, so the date on the camera was 1/6/07!!! I meant to tell her about this, so she wouldn't think i was bringing in old pictures to try to put one over on her in trying to convince her that I really needed that diuretic, but i totally forgot to tell her! I don't know if she noticed the date. She never said anything. As well as she knows me, surely she wouldn't think i was trying to pull a fast one. At least, I hope she didn't!!

I also forgot to tell her that the neurologist diagnosed me with peripheral neuropathy last week. I think instead of calling her, I'll send her a little note.

That is funny about the Public Announcement, but I know you all don't have medical PAs there in the UK, so I'm happy to fill you in. A PA is a physician's assistant. PAs have gone to medical school, just like a doctor, but they would need to further their education just a bit to become full-fledged doctors. However, I have seen 2 PAs in the past, and as far as I'm concerned they know as much, if not more, than than doctors! This particular PA is extremely intelligent. She amazes me because she just seems to know everything about everything!

I asked my PA what the chest x-ray was for. I asked her if it was absolutely necessary. I thought it was for my heart because of the way she was talking. When I asked her why she was ordering it, she said it is always good to take a look at the lungs and the chest every now and then. I REALLY don't like running tests for no apparent reason! If she IS looking for anything in specific, she did not tell me. I told her every time check my heart, it's always normal. I didn't understand why we keep doing chest x-rays. She said we just haven't done one in a while. I'm not happy about this. My body has enough trouble; it doesn't need extra radiation for no reason! Neutral

Brigitte, thank you so much for all the cute little cats and smiling flowers! Love those little things!

Kathi, my heart has a steady heartbeat, but my pulse is VERY slow right now. It is in the low to mid 50s. My entire body feels like it's just running in slow motion. it's a real effort to do anything. I keep moving because I don't want to gain any weight, but I'd much rather just lie around all day. I honestly feel like my body is just going to stop. It's not a good feeling. Sorry to hear about your hubby's problem. That is a shame the pacemaker didn't solve the problem. Poor guy.

Yes, I like when the doctors make you feel like they're going out of their way to order some bloodwork for us. Like it's a real effort to push that pen!!

Amanda, thanks for the tip. Yes, I used to pass out when I was a teenager, but I was anorexic at the time. I just refused to eat. I'm sure that had a lot to do with it! I scared my poor mother to death because I just wouldn't eat anything. I had been chubby as a young child, and I didn't want to be chubby anymore. Believe me when I tell you, I was NOT chubby as a teenager. I looked like a stick. Now-a-days, I'm a chubby, little, old woman!  Laughing  I still don't eat much at all, but I think the old thyroid is keeping me from being thin again. It's not as big a deal now at this age though. I will always keep trying, but if this is what God wants me to look like, I'm ok with it. I guess. There's nothing more I can do about it.

Audrey

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Post by Tigerlily Fri Jul 11, 2014 1:07 pm

Hi Audrey

Just a quick reply - so glad your PA is still on your side and trying to help.

I know what you mean about excess radiation, but perhaps she is checking for sarcoidosis which can show up in the lungs. I had to ask my GP for a chest X-ray to rule this out when I was first looking at the possibility of pHPT.

Take it easy, m'Dear - no rushing about - have a calm weekend.

Love from Tigerlily  I love you  I love you  cat  cat  cat  I love you  I love you

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Post by Little Audrey Fri Jul 11, 2014 1:28 pm

Thanks, Tigerlily. Yes, I was wondering if she might be checking for sarcoidosis. I also am wondering if she might want to get a look at my thymus. I am thinking maybe she didn't want to tell me what she was looking for, for fear of frightening me. She did seem to think it was very important, so I will get it done.

I'll be leaving soon to go get all this bloodwork taken care of. I think I might go back over for the x-ray on Monday. It's a gorgeous day here today, and I think my granddaughters might be coming down to swim, so I don't want to be gone all day. My PA has also ordered a 24-hour cortisol urine test. I was thinking about picking up those jugs on Monday when I go for the x-ray. I could pick those up today; I'm not sure yet if I will. Oh boy, another 24-hour urine test! Can't wait!  What a Face 

My blood pressure looks a bit better this morning. The systolic numbers stayed above 100, and the diastolic numbers only dipped into the 50s 3 times! No 40s today! I am not sure if whatever is causing all of this crap has now turned it up a notch and is functioning slightly more normal this morning or not, but I was hoping since I'm going for the bloodwork to find the problem, my BP would have stayed as low as it has been until after the blood is drawn. Maybe the problem would have been more easily detected? Does that make any sense? I don't really know it that would make a difference or not.

Guess I'd better finish getting ready and get out of here. I'm hungry!!

Audrey

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Post by Little Audrey Fri Jul 11, 2014 1:29 pm

Forgot to say, thank you for all of the cats and smiling hearts!! You know they always help!!  Smile 

Me

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Post by Little Audrey Fri Jul 11, 2014 7:45 pm

Well, bloodwork went very well this morning. As I mentioned earlier, I was just a bit concerned since I've had so much trouble with the hypotension. I didn't know if that would have any effect on my body when the blood was drawn. I also was a little concerned when I walked into the lab and the 3 women (the ONLY 3 women) who are able to find my good vein and draw my blood, were not there! None of them! There was a young girl there instead. Oh crap! She was a very nice, young lady, but I still don't enjoy having that needle in my arm going up and down and all around for 5 minutes while they search!! To my surprise, this young lady put that needle in there and on the very first try she hit "old faithful!" I thought surely there was no way she would be able to keep that needle in the right spot and keep that blood flowing to fill 8 tubes, which is what they needed today, but she did!! It was a good day at the lab!

I picked up my bottles for my 24-hour cortisol urine test. It was rather embarrassing when the gentleman there called my name, and when I went to the window he only gave me 1 bottle. This will be the third 24-hour urine test I've had done over the past few years. I had 2 urine calcium tests done in the past when I was trying to get diagnosed with HPT, so I know I need 2 bottles! I had to tell the man that I needed another bottle. He looked at me rather odd. I told him I had two 24-hour urine tests done in the past, and both times I needed 2. He smiled and went in and got me another one. I told him I really drink a lot. He just smiled and gave me a few instructions for the test. I don't think I'm going to start the collection until Sunday. Then I'll go back over to the hospital to turn in the bottles on Monday and get my chest x-ray at that time.

I sure hope they find SOMETHING with all of these tests!

I checked my blood pressure again when I got home. I was anxious to know if it would have stayed as high (which was still rather low) as it was before I went over to the hospital this morning. It didn't. My readings were 82/54, 97/48, 93/51, etc. Still too low.

I was thinking of something my PA said to me yesterday. When I mentioned to her that I was wondering if this might be an adrenal issue causing these symptoms, she said, "Well, you do have some symptoms of Addison's, but I don't really see any reason why you would be having a problem with your adrenals." I'm not sure what she meant by that. There really was no good reason for my thyroid to malfunction over the years or for my parathyroid glands to malfunction either, but they all did. I wish I would have asked her what she meant. I'm wondering why she was so sure my adrenals would not be having a problem now.

She was not willing to run all 4 tests for Addison's that someone on the Facebook support group suggested. I hope the 2 she did order will reveal something. Someone said it is useless to check the urine for cortisol. I hope that is not true since that is 1 of the tests my PA ordered.

Please keep your fingers crossed for me. I really need these tests to reveal something!

My feet are getting puffier and puffier as the day goes on today.  Crying or Very sad  Now I'm stuck with these water-logged feet, because I can't take any diuretic due to the low blood pressure. Oh, crap, this isn't good. Sorry for griping. I'm so exhausted, maybe soon I'll be too tired to gripe too!!

Audrey

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Post by Tigerlily Fri Jul 11, 2014 7:57 pm

Put your feet up, Audrey, to try and drain them a bit. I usually lie with my feet resting on a small pillow against the wall above the headboard of the bed for 10-20 minutes, and try and meditate at the same time, so as not to feel as though I'm wasting it!! Feet higher than hips usually drains some fluid away.

Good luck over the weekend - and with the tests early next week.

Lots of love and cats, too  cat  cat  cat  cat  from Tigerlily xxxx

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Post by Brigitte0 Fri Jul 11, 2014 9:10 pm

It sounds like you need a rest Audrey and definitely put your feet up as Tigerlily wisely said. You've had a busy couple of days, so I hope you have a lovely weekend - even if one of those days is spent with the 24 hour wee! Good luck for that; I know it will be lovely for you Wink 

Love, hugs and  cat  cat  cat 
Brigitte xx
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Post by Kathi209 Sat Jul 12, 2014 5:01 am

Audrey don't let your heart rate get below 50, hubby's started dipping below 50 and that's why he needed a pacemaker. I hate to say it but you may need to add a  I love you doc to your list. I hope not.

I also had a chest xray a couple of years ago to rule out sarc's.

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Post by Amanda Lynne Sat Jul 12, 2014 6:07 am

Take it easy over the weekend Audrey, you sound like you are going through a pretty tough time. Hope the puffiness goes down a bit. Have fun with the 24hr wee wee.
Love A xxxx
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Post by Jasmine2 Sat Jul 12, 2014 8:56 am

Audrey, sorry I've been a bit quiet on here lately, quietly fighting my own crusade against the pHPT demons, but I just wanted to let you know that I'm thinking of you, and sending love and healing cyberhugs your way - oh and some cats and flowers  cat  cat  cat   flower  flower  flower Keep on keeping on my friend!

And the same to all my other pHPT warrior friends on here - keep on keeping on, sending you all love and hugs and sorry for my absence of late. I'm right here with you just not very vocal right now.

Jasmine x
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Post by Tigerlily Sat Jul 12, 2014 11:30 am

We're with you, too, Jasmine. Hang on in there. Post when you feel up to it.

Lots of Love from Tigerlily  I love you  I love you  cat  I love you  I love you  xxxx

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Post by Amanda Lynne Sat Jul 12, 2014 2:19 pm

Yes thinking of you Jasmine.
Lots of love Amanda xxxx I love you
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Post by Little Audrey Sat Jul 12, 2014 2:33 pm

Thank you all for your concern, tips, hugs, cats, hearts, and everything else good that you're sending my way! It does help to know so many people care.

Jasmine, I know you're going through a terribly rough time right now and it's hard for you to post. Please know all of us here understand completely. We all know you care about us, even if you're not posting. If you need time to yourself, then that is how it should be. When you feel like posting, you know we'll always be here to eagerly listen to your thoughts. You just take good care of yourself!

My BP looks a bit more normal this morning, but I'm wondering if that's because I am retaining more and more water, which would raise the BP. If I would take the diuretic and get rid of the water, no doubt the blood pressure would fall too low again. I took my pressure 10 consecutive times this morning like I always do. Only 3 readings of the 10 were considered low. A few more were very close to being too low, but just made it into the normal range. Pulse ranged between 54 and 66. It would seem that my body is still running in slow mode.

Our local hospital has started something new, which I am VERY excited about! They have a new program which will allow me to access my lab results online! I'm hoping this will mean I will now be able to get the results much quicker; hopefully, as soon as they enter them into their system! It usually takes between 7 and 12 days for me to receive the results in the mail. I'm hoping this will cut that wait time drastically. I called this morning to register for this service, but being Saturday, the woman in charge was not there. I left my name and number. Can't wait to hear from her! It's a shame they didn't have this service during the 3 years I was trying to get diagnosed with HPT! Waiting for those lab results made me crazy!!!!

I hope you are all having a wonderful Saturday!! If you're in pain and/or feeling like crap, I hope it all vanishes so you can enjoy the weekend!

Audrey

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