Hyperparathyroid Forum
By logging-in to this Forum, you are agreeing to the Hyperparathyroid Forum Terms and conditions of Use http://hyperparathyroid.forumotion.co.uk/f5-hyperparathyroid-forum-terms-and-conditions-of-use

The blood draw From Hell!!

Page 1 of 2 1, 2  Next

View previous topic View next topic Go down

The blood draw From Hell!!

Post by Little Audrey on Fri Nov 14, 2014 8:22 pm

Oh, my gosh, I have not had a blood draw like this for probably 30 years. I can't believe this all went so badly! The first thing I do when I arrive at the lab is look to see who is working. They all know me well there, and they all know I'm a very tough case. As a matter of fact, they have 2 nicknames for me there. They call me Dr. S.......(my last name), which I find very funny since you all call me Dr. Aud here), and they call me The Triple Threat. They call me the latter because my veins are very deep, very small, and very crooked. There are only 3 women who work there who can get my blood on the first try. If I don't see any of them there, I know it's not going to be a good day.

Today I arrived at the lab, took a look around, and saw 3 strange women who I have never seen before! Shocked It was not good. I put my orders in the bin, signed the paper to have all results mailed to my home, and took a seat in the waiting area. There was no one else there waiting when I arrived, so the 3 woman got to work on the computer with my lab orders. One woman sitting at the computer started to shuffle through them all. I had 3 pages of orders from 3 different doctors today. This is normally not an issue. I have had to do this in the past. The woman on the computer immediately had questions. She started asking the other women about my free T3. She said she wasn't able to find that in the computer. She asked the other women about this, and neither one of them could help her. While she was struggling with that, one of the other women asked me who the 3 doctors were who ordered the labwork. Now, the doctors names were right there on the pages I handed them. I told them who the 3 doctors were. When I named my nutty nephro, they all looked totally lost and started searching the papers for his name. Then one of them said, "Oh, there it is!" ????? I'm thinking to myself, oh my goodness, this is NOT good!

Meanwhile, an elderly gentleman came in needing his blood drawn too. He sat down for about 2 minutes, and they called him in to get his blood drawn. The woman looked at me and said, his order was easy and it went right through, so we can take him in now. It's a good thing I was in a good mood today. I laughed and asked if I was causing a problem. I could clearly see this was the case, but it was certainly not my fault.

This other gentleman went in the other room to get his blood drawn. I sat in the waiting area for 5, 10, 15 more minutes! The 2 women who were left at the computer continued to question everything and look lost. Finally, a young girl came in to help. I have seen her there before, but I couldn't remember if she was good at drawing the blood or not. I only saw her one other time, and it was quite a while ago. The woman at the computer asked this young girl about the free T3. The young girl told her to take the order back into the actual lab and ask them what to do with it. What the heck?!!! It's not like this was some weird test for goodness sake! So the woman took the labslip back to the lab. She came back out, sat down at the computer, and continued working on my orders.

Ten more minutes had gone by. That poor gentleman who had gone in to get his blood drawn never came back out!! I was thinking maybe he was having some sort of difficult test that just took a while.

A few more minutes passed, and one of the women told me to come on back to get my blood drawn. When I got back there, that poor elderly gentleman was sitting in the other chair, and the first woman was STILL working on him, just trying to get his blood!!! He looked at me and rolled his eye with a scared look on his face. I thought it might be a good idea to mention to this woman who was going to draw my blood, that I am a tough case, and she might want to call for help if she is not used to dealing with toughies. I hate to scare them right off the bat, but I also don't enjoy sitting there feeling like a darned pin cushion! The girl said we would be ok. Yeah, right.

I showed her exactly where they ALWAYS go in to find my best vein. She felt it for quite a while and said, "No, there's nothing there." ???? I told her if she couldn't find anything THERE, we were in BIG trouble!

She asked me if she could look at my other arm. I told her she certainly could, but there is nothing there. She looked all over both arms and said she was stumped. I was thinking I should just go home and come back another day, but I really wanted to get this done today!

Meanwhile, that elderly gentleman was still sitting beside me giving me scared, disgusted looks, because the other woman STILL could not get his blood!!!

She spotted a vein on the outside of my forearm in the fleshy part of the arm. She said she was going to try that one. I told her I never had that one stabbed before, but if she felt she could do it, go for it. She stuck the needle in, and sure enough after wiggling it around for a while, she found the vein, and the blood started to fill the tube. After the tube was about half full, she made a strange face and shook her head. I could see that the blood had stopped flowing. She said it was not good, and it wasn't working. Crying or Very sad
She had no idea what to do. It was obvious she was VERY new at this, and it was very obvious the other woman working on that gentleman was also very new at it all. I actually felt badly for the girl working on me. I kept joking around trying to calm her.

Then I noticed a nice, juicy vein sticking out on the back of my hand. I pointed it out to her. She asked me if I wanted her to use that one. All I wanted was to get this darned blood drawn and get my results!! So I told her if she was game, I was. So she prepared to attempt this. As she was prepping me, that other young girl who I had seen there before, came into the room to see what was going on and what the holdup was. She took over on the elderly gentlemen, as the other woman was STILL working on him!!

The woman working on me inserted the needle into the back of my hand. The vein moved a bit, but she was able to grab it. The blood started to flow into the tube. I was thinking, hallelujah!!! Shortly after the blood started filling the tube, the young girl working on that gentleman, looked over and said, "Finish that very quickly and get out of there! That vein is blowing! I can see it from here!" affraid Immediately, the blood started to pool under my skin, causing a HUGE purple lump on the back of my hand! This was a bit frightening! I don't think this has ever happened before! It was not just bruised, it was VERY swollen! It looked like someone had cut a table tennis ball in half and put half under my skin.

They finally finished up on that poor elderly man sitting beside me. When he got up to leave, he looked at me and wished me good luck. Then a young girl came in and took his seat to get her blood drawn. She became very pale when she looked down and saw what was going on with me. She told me she was scared to death to get her blood drawn. I told her it would be ok. I told her I was a very tough case. What a shame that she had to see all of this.

The young girl who worked there and told the woman to stop drawing from my hand, then came over to work on me. Oh, and the 2 tubes the first woman had drawn from my forearm and my hand weren't any good. She didn't fill them enough for them to use, They had to pitch them and start from scratch!

So now the young girl is about to attempt to stick me for the third time to try to find another vein. As she was feeling around, I pointed out to her the spot where they ALWAYS draw my blood when I come in. She felt the spot and said, "Well, there we go. That's a great one!" She looked at the first woman who worked on me and said, "So why didn't you just use this one in the first place?" The woman told her because she couldn't feel anything there. Oh, my goodness!! So the young girl prepped my arm, I made the sign of the cross, more for a laugh than anything, and she went right in, filling 5 more tubes of blood. Then she tried to patch up all of my wounds, while putting a LOT of pressure on the back of my hand because it was getting bigger and bigger.

That poor young girl who was sitting beside me getting her blood drawn, was still sitting there, looking off to the side with her eyes closed, while the other woman continued working on her. That poor girl! I sure hope she got out of there with less trouble than I had!

So that was my fun day at the hospital today! I think the next time I go over there, if I don't recognize anybody, I am going to tell them I'll come back another day! I trusted that woman. She said she could handle me. I'm not listening to her next time! When I left, I patted her on the arm to let her know it was ok, but I really don't want her working on me again! I know they all have to learn by practicing, but it won't be on me!!

And to top off the day, my throat is sore and swollen, and it looks like I must be catching a cold. My gynecologist was sick and coughing at my appointment on Wednesday. I guess I can thank her for this. Just what I need; more misery in my life. It's just not a good day in my world.

Audrey






Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Amanda Lynne on Sat Nov 15, 2014 7:38 am

Oh Audrey
That sounds like torture, it doesn't matter how used you are to having blood taken when you get an untrained person you really end up feeling like a pin cushion.
I had this once when I had my iron infusion, the woman had gone right through the vein and the infusion was bein pumped into the muscle instead of the vein, it was very painful which it never usually is and quite scary as my arm blew up with a big black bubble.
I think you are right, if you see these women there again run a mile.
I hope the back of your hand has gone down now and you aren't left too bruised.
Love Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Brigitte0 on Sat Nov 15, 2014 8:31 am

What a dreadful experience for you, Audrey. Another tortuous chapter in your book, I think! Definitely walk in and straight out if you see any of those women in there again. I was going to call them ladies, but that implies they were nice somehow and they weren't! 

I expect you're bruised and pretty colourful by now on your hand,  so I hope that isn't painful as well. Also hope that you get over your sore throat quickly and don't get a cold that lasts too long. Take care of yourself. 

Love and lots of hugs 

Brigitte xxxx
avatar
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 51
Location : Southampton, Hampshire

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Jasmine2 on Sat Nov 15, 2014 9:28 am

Oh Audrey, what an experience! I know exactly what that feels like! I'm the same, it's horrendous trying to get into any of my veins too for exactly the same reasons as you (again!). When I had my 4D CT a few weeks ago I was in the Imaging department for over two hours for a ten minute scan, and it wasn't because they were running late! Three different technicians tried unsuccessfully to get venous access to inject the contrast. In the end they gave up and I had to wait for a doctor to become free to do it. I had some very impressive bruises up my forearms I can tell you so you have my sympathies with your hand. I have to have blood tests regularly, at least once a month, and I never get it done at my GP's, the nurses just can't get it, so I go to the Primary Care Centre in town - there's a Malaysian phlebotomist there who is brilliant and somehow manages to get in first time, every time. I always say a little prayer that she's working that day and that I get her ......hope your bruises soon fade Audrey, mine took nearly two weeks!

Jasmine x

PS hope you don't get a cold - I HATE having a cold!
avatar
Jasmine2

Posts : 751
Join date : 2014-03-30
Location : Cambridgeshire UK

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by mealinacup1 on Sat Nov 15, 2014 10:13 am

Hi Audrey,

That whole experience must have been awful, isn't it funny you learn to develop a six sense when you visit a hospital and you just know its going to go badly.
I have a friend who went to the hospital for a blood test and she had good veins, anyway the person taking her blood messed it up and her vein collapsed she said it was agony, her arm was sore for a week.
I have to admire you, how patient were you! 

Take care

Diana x

mealinacup1

Posts : 81
Join date : 2014-07-25
Location : Surrey

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Lucycatnaps on Sat Nov 15, 2014 12:35 pm

Hi Audrey,
Ohhh really not fun for you and I bet you will be really bruised and sore.  I have reasonable veins in my arms and most of the time they have no problems getting blood out of me but there have been exceptions.  I really do think it depends on technique, the worst one for me was having the MRI contrast, the technician tried both arms and back of hand and still could not hit gold and then had to wait for a doctor to do it.  The girl at Hammersmith on Tues had no problems, took loads and not a mark after.  I hope you are less sore now!
Take care, Sue x
avatar
Lucycatnaps

Posts : 376
Join date : 2014-03-30
Location : Lincolnshire

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Little Audrey on Sat Nov 15, 2014 10:24 pm

Oh, my gosh, Amanda, that sounds awful about the infusion incident! OUCH!!!! I probably would have passed out, or at least smacked the woman. Laughing At least mine was not too painful. It just looked awful. Not what I was expecting from a routine blood draw.

No, Brigitte, it wasn't much fun, but as I mentioned to Amanda, at least it wasn't very painful. No, I don't think I would call them ladies either. In my eyes they looked more like Dr. Frankenstein yesterday!

Geez, Jasmine, yes, we do seem to have quite a bit in common, don't we? That must have been awful dealing with all of that for your scan! You poor thing. Like I said in my post, there are 3 women at the hospital where I go, who can get into my good vein on the first try every time. I have even requested them when I've been there. If there is a unfamiliar person there working, I will apologize for requesting someone else, but I'll be darned if I'll go through that when I don't have to. I'm happy they finally took care of you, and you were able to get the scan.

I too seem to be going for bloodwork at least once a month. It seems lately I've been going every couple of weeks. Once we get some of these thing under control, I will probably be going less often, but for now I'm about ready to pitch a tent in the hospital hallway and just move in!

And you are right, Diana, you can sort of just tell when things are not going to go well. I should have just turned around and left, but I was so anxious to get these tests taken care of. I am very happy it's over. I've been checking the hospital's portal every hour or so to see if my results are in yet. I LOVE that portal! Sometimes now the results are in the very next day! They're not in yet.

And, Sue, I'm sorry to hear you too have this problem at times. It amazes me how some people can go right in there and hit that vein on the first try, and others probably couldn't hit it using a pipe for a needle! Years ago when I had a lot of trouble, I realized I had not drunk any water that morning! So from now on I make sure I drink a few glasses of water right before I leave the house. That always works like a charm. Well, it did until yesterday. They need to find a better way to teach those new people how to hit those veins!

Thank you all for the well wishes regarding the sore throat and cold. Yes, the throat is so swollen and sore, I have not spoken more than a dozen words today. It just hurts too badly. I am not extremely runny or congested, but I am dripping a bit. Maybe it won't be a very bad one. Once the throat stops hurting, I think I'll be in good shape. It could be worse, right?

Audrey


Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Tigerlily on Sat Nov 15, 2014 10:46 pm

Bless you, Audrey - try and rest up over the weekend, have some Vitamin C, and I hope the cold passes quickly for you. Sometimes they do that.

Love from Tigerlily xxxx

Tigerlily

Posts : 1225
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Little Audrey on Sun Nov 16, 2014 1:12 am

Thanks, Tigerlily. I didn't do much of anything today. I fed my cats and tossed a load of laundry in the washer, and that was it! I figured my poor, old body must need the rest. I received an email from my sister a little bit ago. She said she and her hubby were going out to dinner and then going dancing. They go dancing 3 times a week. She works full time and teaches a dance class 1 night a week. She is 2-1/2 years older than I am. I often wonder what the heck happened to ME?! I was always the athletic one. I was always into physical fitness and VERY active. Now I can't imagine having enough energy to go out dancing at night! I don't even have enough energy to go out to eat! All I want to do is sit on my couch. I manage to do the things I need to do around the house, but I have to push myself, and I certainly don't have energy or anything else. Maybe some day that will change. Let's hope so!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Jasmine2 on Sun Nov 16, 2014 10:16 am

Audrey - everything that you said you could be describing me! I used to LOVE to dance, play netball, go hiking with the dogs - and I mean hiking for miles! Now I can only manage short walks with the dogs and have to drive out to country parks and areas where they can run to their hearts' content and get good exercise where I don't have to move very much. Just as well they are very well trained and have excellent recall!  It's soul destroying how much this disease robs from your life! I would quite enjoy lounging around on the sofa and being a couch potato if I could only get interested in a good book again (I have so many unread and half read books on my Kindle!) or manage to watch a good movie all the way through ....... deep sigh!

Jasmine x
avatar
Jasmine2

Posts : 751
Join date : 2014-03-30
Location : Cambridgeshire UK

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Little Audrey on Sun Nov 16, 2014 3:16 pm

I hear ya, Jasmine.   I think illness and the inability to move as we once were used to is especially hard on those of us who used to be extremely physical.   I NEVER used to sit at all.   I had a secretarial job for a few years.   I thought I was going to die if I had to sit in that chair 1 more day!     And now I feel like I'm going to die if I have to get up and move.   This is so hard to accept.    Four years ago I was still climbing up into my granddaughters tree house and playing with them.  I was still working out very hard every day, doing aerobics and using weights.   My granddaughters used to ask me to flex my muscles.   They were amazed that their grandmother had so much muscle.   Now my muscles hurt so badly, I don't like to move them at all.   I still force them to work because I'm afraid of losing them altogether, but it is no easy task, I certainly can't move them like I used to, and it's very depressing.   There is no way I can workout with those weights anymore.   I have lost a lot of strength.    It is amazing, though, how the human body and the human mind continue to fight to survive no matter how tough that battle is.    I do think we will all get through this crap.   For some reason, I think we were all meant to experience all of this to better ourselves, if that makes any sense.    

And now on a brighter note, my throat is feeling quite a bit better today, and my cold has progressed to the runny stage.    I am very happy to say as far as colds go, this one does not appear to be the worst I've ever had.     I was so afraid that my body would have a tough time healing since I'm now dealing with the adrenal issues and also since we are in the process of adjusting and regulating thyroid meds.  I figured I probably wouldn't have much fight left in me, but to my surprise, the old body is still kicking butt!    

Onward soldiers!!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Little Audrey on Sun Nov 16, 2014 4:59 pm

Well, most of the results of my latest bloodwork came in last night on the hospital's patient portal. My nutty nephro and I think a lot alike. I think this is why I get along with him so well. If you recall, I called him last Monday to tell him I could not stand the nonstop muscle cramps in my neck, shoulders, back, and upper arms any longer! They've been hurting now for 3 straight years with no relief, and they have gotten even worse over the past few weeks since we made the switch from Armour to Synthroid. This was not my plan. When I heard that Armour can cause severe cramping of the neck, shoulders, upper arms, and thighs, I thought for sure I had finally figured out what was causing my cramps. I know it takes time for thyroid meds to take effect. I'm not sure how long it takes for them to stop affecting the body once they are stopped. All I know is my pain has worsened, and I just cannot stand it anymore!!

When I called him for help, and told him I was thinking now that maybe I needed to add some T3 to my regimen, since Synthroid contains only T4, he immediately suggested we check my potassium and magnesium levels.

I have told my doctors for years that I thought my potassium and magnesium levels should be higher, but because they were in the normal range, they told me all was well, even though I had (and still do have) many symptoms of low potassium and low magnesium.

My potassium has always been low or low/normal, until March when I started suffering the symptoms of adrenal insufficiency. At that time the potassium rose from it's usual 3.8 or 3.9 to 4.1, 4.2, and then to 4.4. Normal is 3.5-5.1. This time it came back at 3.4. This is the lowest it has ever been.

Florinef, which I take for the low aldosterone is supposed to lower potassium and raise sodium. This should raise blood pressure, which is one of the most concerning symptoms of low aldosterone. I am also taking a different diuretic now for all of this awful edema, which is NOT potassium sparing. It looks that the combination of these 2 medications has lowered my potassium too much.

My magnesium has always been low/normal. It has always been between 1.7 and 1.9. Normal is 1.5-2.9. This time it came back at 1.8, which is up from 1.7 last time. These levels are all normal, but I'm wondering if I'd do better if they were a little closer to mid-range.

I am a little stumped by my sodium level. It was 135 this time. Normal is 135-146. As mentioned above, Florinef is supposed to raise sodium. I guess it's the diuretic that is lowering it. I need it to be higher! This is such a complicated case! Anyone who has low blood pressure should not be taking diuretics, but since I am so full of water, and the nephro thinks it is this water that is negatively affecting the kidneys, causing them to not produce renin. He thinks since renin triggers aldosterone production, and I have VERY low renin, this is why I have low aldosterone. So if I can't get rid of all of the water, the renin and aldosterone problem is never going to improve, and I will continue to need the Florinef AND the diuretic!

I think the nephro will probably want to change my diuretic to a potassium sparing drug instead of my current one. The reason we were not concerned about this before, is that low aldosterone causes high potassium and low sodium. So we were not really concerned about my potassium getting too low. I guess taking so much of the diuretic has now lowered the potassium AND the sodium.

I learned recently that low potassium can not only cause severe muscle cramps, muscle pain, confusion, muscle stiffness, dizziness, nausea, and fatigue, it also can cause edema! I am praying that once we raise my potassium, the edema might resolve so I will no longer need the diuretic. And, of course, I am praying that all of this muscle cramping and stiffness resolves!!

My thyroid levels from this latest testing shows that my free T4 has not changed at all, which surprised me since Synthroid contains only T4. It is still mid-range, which is good. My TSH has risen from 0.06 to 0.47, which we expected since Armour suppresses TSH. Normal is 0.34-5.60. So my new level is now acceptable. My free T3, which is the one I am really concerned about, is not in yet. Crying or Very sad The blood had to be sent out to another lab for this test. I am very anxious to see this level!

So last night I did something which some people might find crazy. I used to take potassium supplements through the years when I would take diuretics. I've had a problem with edema over the past 35 years. It would come and go. This time it just won't go! Anyway, I had some supplements still here that I just hated to throw away. They expired in December of 2013, last year. Yes, last night I took one of these tablets, and this morning I took another. The prescription calls for 1 tablet in the a.m. and 1 in the p.m., so tonight I will take another. I don't think any of my doctors understands just now desperate I am to get rid of this #$%&$# pain in my neck!! I'm sure the nephro's office will call soon to let me know how he wants to treat this, but for now, I'm treating it myself!

So there you have it. This is where I stand with everything right now.

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Little Audrey on Sun Nov 16, 2014 6:35 pm

Forgot to mention, another reason I was in such a hurry to start the potassium is because for about a month I've been having very intense heart palpitations. Several times I ended up punching myself in the chest because they just wouldn't stop. That is pretty frightening.

And I just took my blood pressure, and it looks like we might be able to lower the Florinef dosage! Holy cow, the systolic pressure stayed in the 120s!! And the systolic pressure stayed in the mid 60's and 70s! I mentioned before on here that I usually take my pressure 10 times when I sit down to take it, since you're supposed to wait 10 minutes after sitting still. By the time I take it for the 10th time, it has been 10 minutes. So all 10 pressures looked normal today, and maybe should have even been a bit lower! Wow, I never thought I'd see this! Could it be that my kidneys are starting to produce and secrete renin again? Should I dare think that is even a possibility? Or maybe my body needs the potassium, and that is why my pressure is up some? Whatever it is, at least something is happening! Let's hope it's a good thing!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Tigerlily on Mon Nov 17, 2014 2:48 pm

Hi Audrey - so sorry to hear you are still suffering, but that looks like a good result with the blood pressure readings.

I've been doing some research to day and came across the fact that wood stains often contain organophosphates and one of the symptoms of OP poisoning is muscle twitching and tremors. I expect you've had everything checked out since the wood stain incident, but this is interesting:

Organophosphates inhibit AChE, causing OP poisoning by phosphorylating the serine hydroxyl residue on AChE, which inactivates AChE. AChE is critical for nerve function, so the irreversible blockage of this enzyme, which causes acetylcholine accumulation, results in muscle overstimulation.

Can't remember what AChE stands for now, and this rather dire prediction was in connection with war use of OP poisoning, but I wonder if amongst everything else you have ever had your AChE level checked?

I haven't got the reference for this, but serum creatine kinase was also mentioned in connection with muscle twitching, too.

Just a few idle thoughts, Audrey - hope you don't mind - and I hope also that today's a better day than yesterday.

Love from Tigerlily xxxx

Tigerlily

Posts : 1225
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Brigitte0 on Mon Nov 17, 2014 3:30 pm

Dr Aud on the case again! What a difference with your blood pressure... very interesting. I hope you can catch up with Dr Nephro in the near future for more input and that you feel better overall. 

Love and hugs 

Brigitte xxxx
avatar
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 51
Location : Southampton, Hampshire

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Little Audrey on Mon Nov 17, 2014 4:24 pm

Thanks Tigerlily and Brigitte.   No, Tigerlily I certainly don't mind if you choose to help with the research on my case.   I greatly appreciate the help!   Thanks!

 I doubt if the twitches are being caused from the wood stain incident since that happened almost 35 years ago, but I am not dismissing the idea.    Who's to say it didn't take all these years for my muscles to get to that point?    I will be suggesting this to my nutty nephro.   I did ask him at my last appointment if he thought it was possible that the wood stain damaged my kidneys in some way, since I've had trouble with edema on and off ever since the day that happened.    He said he couldn't be sure, but I bet he gave that some thought afterward.

Yes, the blood pressure looks to be normal now.  YAY!   Actually, yesterday it looked to be a bit too high when I first sat down.    I know it is the 10-minute pressure that matters, but I'll be keeping an eye on this.

My free T3 level arrived on the patient portal last night.   If you recall, I had asked my nephro last Monday if we could add some T3 to my regimen because I was afraid now that I made the switch to Synthroid, I might be a bit low on T3.  Well, my FT3 has dropped from 3.6 to 2.7.    Normal is 2.3-4.2.    Since the muscle cramps have worsened, and my ear canals have started itching again (they started 2 days after I switched to Synthroid), I think the thyroid meds need to be adjusted.    He might want to just increase the Synthroid.   As log as we get the FT3 up a bit, I don't care how we do it.      Yes, after itching and peeling very intensely nonstop for 3 years straight, my ear canals stopped itching completely a few months ago when we increased the Armour dosage.   They did not itch at all for 3 months.   Then 2 days after I switched to Synthroid they started itching again.   I do think we need to increase the thyroid meds.

So I guess once we get the potassium taken care of and the thyroid meds taken care of, things just might improve for me?    I'm sure hoping so!    Like I said earlier, if I could just get rid of this neck pain, I would indeed be in heaven.   I could handle the rest.   Please keep your fingers crossed for me.

I'm going to make a list of things I want to mention to the neprho's receptionist when he/she calls.   I am going to try to be patient this time and wait for them to call me.   Not sure if I can hold out now that I've seen the results, but I hate to keep calling them.   If they don't call by tomorrow, I might cave and grab my phone.  Smile

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Tigerlily on Mon Nov 17, 2014 4:32 pm

Great, Audrey - so glad a few things are looking better.

I had some bone lumps on the top of my feet examined by US and X-ray some months ago now but had received no news back from the clinic. When my doctor chased it up for me today they told him they were waiting for me to make another appointment!!! Just how would I know when they would be ready to see me?!

So, I would phone your people back so as to keep them on their toes!

Love from Tigerlily xxxx

Tigerlily

Posts : 1225
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Little Audrey on Mon Nov 17, 2014 5:00 pm

Yes, Tigerlily, I just might do that. I just completed my list of questions. These people are so good about making phone calls, though, and I have bothered them so much, I'd kind of like to give them a chance to call me for a change. Does that make any sense? If I get to where I can't stand feeling like this for one more minute, I will definitely pick up my phone and make that call, and there's a real possibility that might happen. Smile

That is a real shame that they sort of let your case slip and not contact you about your feet! You are right, how the heck were you supposed to know they wanted to see you again if they never called?! I sure don't understand what is wrong with people! When something like this happens, all I can think about is I wonder how they would feel if someone did this to them when they were suffering? Good thing you called!!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Brigitte0 on Mon Nov 17, 2014 5:12 pm

I understand what you mean, Audrey... Call them tomorrow, if they don't call you. 

Tigerlily, surely you knew you were supposed to be psychic! Glory and trumpets, I truly believed you were too Wink Sounds like that department are somewhat inept like many others. 

I had a copy of a letter to my Endo and GP from my surgeon today, whereby he manages to absolve himself of all blame attached to my readmission to hospital the following day, of course. 

Love and hugs 

Brigitte xxxx
avatar
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 51
Location : Southampton, Hampshire

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Tigerlily on Mon Nov 17, 2014 5:16 pm

Yes, Audrey - the feet all got overtaken by the pHPT issue. But now I've got pain in the knobs of my collar bones (clavicles) and one of them seems to have grown lately (and the other sunk)  affraid the bone issues have come to the fore again, so I'm shaking up the Foot Clinic to see what type of bone growth there is on the top of both feet (preventing me from wearing sensible shoes for bad weather, because the bone nodules ache so when covered by shoes for any length of time).

I'm feeling a bit of an old crock at the moment, but my appointment with FP to discuss the neck US and nuclear scans is on 25 November, so I'm trying to stay sane and hang on in there till then!

Meantime, I'll go stroke a few cats - usually helps cat cat cat cat cat cat  !!

Love from Tigerlily xxxx

Tigerlily

Posts : 1225
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Tigerlily on Mon Nov 17, 2014 5:19 pm

Yes, Brigitte, I understand the need to be psychic! We'll all be able to join the Magic Circle soon - although looks as if most of us are still walking around it!

Sounds as though your surgeon has extricated himself nicely from your situation - how are feeling now, Brigitte? Any further improvements? I hope so.

Love from Tigerlily xxxx

Tigerlily

Posts : 1225
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Brigitte0 on Mon Nov 17, 2014 6:07 pm

Not the best, Tigerlily, because I have a permanent headache Sad  I have my MRI tomorrow, so let's see if they can make sense of the extra stuff making a nuisance in my brain  Shocked

Hope you get your bone issues sorted out soon and don't have to wait too long for the foot appointment. 

Love and hugs 

Brigitte xxxx
avatar
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 51
Location : Southampton, Hampshire

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Tigerlily on Mon Nov 17, 2014 7:06 pm

Thanks, Brigitte - hope it goes really well tomorrow.

Love and GBH, from Tigerlily xxxx   (Great Big Hugs!)

Tigerlily

Posts : 1225
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Little Audrey on Thu Nov 20, 2014 3:00 am

I have not been on here for a couple of days, so I haven't had the chance to reply to these latest comments. I am so sorry.

Tigerlily, I know what it's like to have terrible, chronic foot pain. It really ruins one's day, doesn't it?! I am sorry you are having so much trouble with yours, but it seems a lot of people with hyperparathyroidism have foot pain. I recall when I first joined Simon's forum and posted about my painful heels and feet, Simon hopped on to tell me that he too had terribly painful feet before his surgery and for several months afterward. I was beginning to think my feet were NEVER going to stop hurting, but over the past couple of days, there is quite an improvement! I went out today to the mall and walked around a bit. As I was walking, it dawned on me that my feet were not hurting! My right heel was slightly sore, but that was it! I sure hope this continues!! As you know, it was a year since my surgery on November 14th. Could it be that it takes that long for the feet to recover from too much calcium? Or could my problem be from something else? I will explain that in a minute.

And I'm sorry to hear about your clavicle knobs. Seems like EVERYTHING hurts when dealing with HPT! I guess all of the bones, muscles, and tendons can be affected. This disease stinks big time!!

Brigitte, I'm so sorry about your headache. I do hope you are getting some relief by now. That too seems to be one of the more popular symptoms of HPT. My head hurt every day to some degree for 3 years before surgery and for about 6 months afterward. I am happy to say it has not hurt now for a couple of months. It could always start up again, but I'm hoping it won't.

I am still VERY bruised from my fun day at Frankenstein's castle 5 days ago. I showed my daughter the one on my forearm today. She was shocked. I am still bruised on the back of my hand too, but it's not as big. The inside of the elbow, where the more experienced girl finally drew the blood, is not bruised at all! There is not even a mark! Next time I am NOT letting those other girls work on me! I am NOT!! I know they have to learn, but it won't be on me!!

Now, I finally have some good news to report to you all, and I am VERY excited about this! I hope I'm not posting too soon. I hope things won't all go haywire as soon as I post this.

Three days ago, when I was checking my blood pressure, I was VERY shocked to see it was actually high!! After having pressures as low as 76/43, this was a real shock! The systolic pressure was in the 130s and 140s! The diastolic pressure was in the 70s and even 80s! I started wondering if low potassium or low magnesium could cause high blood pressure. I was also wondering if maybe my adrenal glands had started producing aldosterone again, and maybe I needed to cut back on the adrenal medication. This medication fools the body into thinking there is more aldosterone in the system, causing the blood pressure to rise. So I hit the internet to get some answers. I found that low potassium can indeed cause high blood pressure. Since my potassium was low when it was checked last Friday, this made perfect sense.

I also learned that low potassium can cause edema!!! You all know how badly I've been fighting this stupid, pitting edema for years on and off, and worse than ever since this past June. My nutty nephro said he feels my kidneys have stopped producing renin because they are so tired of dealing with all of this extra water. Since renin triggers aldosterone production, he feels this is why my aldosterone is so low. I had asked him at one of my appointments if he thought it was possible for my kidneys to start producing renin again, causing the adrenals to produce aldosterone again, if we could find a way to get rid of the edema. He said that was certainly a possibility, and he seemed to think there was a good chance of that happening. The problem is, nobody could figure out what the heck was causing all of the edema!

Well, I knew low potassium could cause severe muscle cramps, muscle stiffness, and high blood pressure, but when I learned that it could also cause edema, I took action!

My nephro's office still has not called me. Crying or Very sad I am sure it takes a few days for them to receive the results, so I'm trying to be patient. However, it made sense to me that if my potassium level was low again now, and I had some old potassium tablets here from a while back when I had to take them because I was taking another diuretic that was not potassium sparing, and at that time my potassium was even higher than it is now, I grabbed my old supplements! I saw that they had expired 11 months ago. I'm thinking the only problem with taking expired potassium would be that it might be ineffective. So 3 days ago I started taking the potassium.

Since this edema got so bad in June, my scale had risen 7 pounds. Over the past several months it did come down 2 pounds, and then it got stuck for months. It simply would not bidge, no matter what I did! Well, yesterday when I got weighed, I was VERY surprised to see it was down 3/4 of a pound! I didn't get too excited. I figured it would just go right back up again. I also noticed that the water in my feet, ankles, and lower legs was down a bit!

This morning when I got weighed the scale was down another 1/2 pound! This has NEVER happened since before it all started back in June. And the water in my feet, ankles, and legs looks noticeably better!!! I could actually feel an ankle bone in the left ankle! The right ankle has always been a bit worse than the left. There was still no bone to be found in that one.

Then tonight, just for the heck of it, I went down and got weighed again. The sale is usually higher at night. Well, not tonight! It looks like it's down another pound! I can now see veins (barely) and bones (barely) in both feet, and I can feel a bone in both ankles! There is still noticeable edema, but it looks a whole lot better!

And I also think it is the potassium supplements that are helping my heels, bottoms of feet, and little toe joints! I have hardly any pain AT ALL now in my feet, heels, bottoms of feet, and little toe joints, and I had a LOT Of pain before!! This is amazing! Surely it is not just a coincidence!

The muscles in my neck, shoulders, upper back, and upper arms are still pretty bad, but tonight they are feeling better than they have for quite a while! This too could reverse and get back again any minute, so I'm trying not to get too excited just yet.

Oh, and for a few years now, I was having a terrible time with my eyes crossing when I'd try to read. This would cause double vision. I noticed a few nights ago that they were hardly crossing at all. Tonight they are not crossing AT ALL! I am not sure if this is connected or not, but I'm thinking it just might be.

So if this continues, and I can get more water off, maybe my kidneys WILL start producing renin as the nephro suggested, and maybe my adrenal glands WILL start producing aldosterone, and maybe I WILL finally feel good again!!!

I also increased my Synthroid just a tad today. Since my free T3 is low/normal, and free T3 is supposed to be in the top 25% of the normal range, I do think I need more T3. If you recall, I did ask my nephro about increasing my T3 with T3 meds. Since my free T4 is midrange, we probably don't need to increase the Synthroid. I guess it would hurt to have the free T4 a little higher, but I don't think it's necessary. When I made the switch to Synthroid from Armour, I was taking 105 mg of Armour. I found a conversion chart which said 90 mg of Armour was the equivalent of 150 mcg of Synthroid. So the nephro started me at 140 mcg of Synthroid. I figured sine Synthroid only consists of T4, there was a possibility that I wouldn't convert it efficiently into T3, I figured I just might need some extra T3. So today I tried to calculate how much more Synthroid I could add just temporarily until I talk to the nephro. I didn't want to increase by much, because I didn't want to cause any adverse effects. So I broke a tablet all up and divided it into 6 little piles. I am only going to add 1 of those little piles to my regimen every day. It might not be enough, but it should help a little.

I am also going to increase my magnesium in a couple of days, since it was just revealed to be low/normal again. It has been low/normal ever since we started testing it many years ago.

I am REALLY hoping that once we get these 3 things adjusted and optimal, I WILL be very ready to dance on that table at the Ritz!!!! It will be my luck, I'll fall off and break a leg, but it will be worth it!!

I am looking forward to going Christmas shopping tomorrow without my feet killing me! And I will be reminding myself that when I went shopping for Christmas last year, I had to use crutches! Not THIS year!!!

I will keep you all posted! Please keep your fingers crossed for me!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Brigitte0 on Thu Nov 20, 2014 9:18 am

Wow, Dr Aud seriously on the case here! I hope you catch up with the Nutty Nephro to share your observations, but it sounds as though you're chipping away at your symptoms and finding answers. So exciting for you Smile 

It's interesting about foot problems and HPT. I had dreadful plantar fasciitis (supposedly) before surgery and it went away for some time afterwards. It comes back when I exercise annoyingly but it hasn't been as bad as it was before. As for my headaches, it seems that the surgery messed my system up in some way and I am now having partial seizures now and again. Which is quite annoying as my epilepsy was controlled for the last 22 years and now it's not quite behaving. I'm still waiting for a neurologist appointment, but I've had an MRI now, so perhaps that will make the neurologist take note. Possibly my medication needs adjusting or changing. It means I can't really go anywhere by myself at the moment, which is quite stifling. I can't even take the dog for a walk alone because I might have a 'funny turn'. Or she might, as she's epileptic too! 

Anyway, best of luck with your sleuthing Audrey! Hope your Nutty Nephro has some more good ideas and you continue to feel better Smile 

Love and hugs 

Brigitte xxxx
avatar
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 51
Location : Southampton, Hampshire

View user profile

Back to top Go down

Re: The blood draw From Hell!!

Post by Sponsored content


Sponsored content


Back to top Go down

Page 1 of 2 1, 2  Next

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum