GREAT nephrology appointment!

Well, as you can tell from the title of this thread, things went very well today at my nephrology appointment.    I do LOVE this doctor!!!   He's amazing!    I have seen many doctors in my life, and it would seem that this man is the only one who really "gets it."    He actually has some common sense, which most doctors seem to be missing.    We get along so well, and we think so much alike.   I love discussing things with him.

I have officially been diagnosed with adrenal insufficiency, and I have dropped off at the pharmacy the new prescription for the medication that hopefully will FINALLY get me back on my feet!   HALLELUJAH!!!    

The 24-hour urine results that I've been waiting for now for 10 days, STILL have not come in, but this wonderful man diagnosed me without that anyway.   I contacted the hospital's patient portal's systems analyst last night and asked if they could please see to it that the results are faxed to my neprho and posted on the portal just as soon as possible, as I had an appointment this morning, and I needed them.   The girl told me she was going to contact the lab director at the hospital to see if he could help me.      He emailed me this morning, telling me that he contacted Quest labs (where my blood and urine were sent for analysis, and they told him that since I turned in the urine on a holiday weekend, there would be a little delay in receiving the results.   They told him they only run the 24-hour aldosterone test twice a week, so the results should be in by Sunday!!!  That will be 15 days since the day I turned the urine in at the hospital!!      I sent this man an email thanking him very much for his help, and I told him I have no problem with the hospital, but I am VERY unhappy with Quest!     I told him I felt waiting 15 days for lab results is unacceptable.    I told him that hypoaldosteronism can be fatal if left untreated for too long, and that I have obviously been suffering with the disease for many years.   I asked him what would happen if a patient would come into the hospital, in an adrenal crisis (which can be fatal!), and the doctors ordered a 24-hour urine aldosterone test.   I asked him if it would still take 15 days for them to receive the results!     I guess they could use the serum aldosterone, as my nephro did today, but this still is not right!

He walked into the room, stopped suddenly, looked at me, and gave me a big grin.   I could see the animated, little Nutty Professor was more than ready to take on my case once again.   He sat down on his stool, and throughout the appointment, hopped up and down several times with excitement.   He reached for and held my arm several times when reassuring me that he could indeed make me well again.    We joked and laughed, and when he laughed, he would lean back and REALLY laugh as he hopped up and down even more!    He told me my new medication comes in 2 strengths.  He said I only needed the smaller pill, so he would order that one instead of ordering the larger one, so I wouldn't have to bother splitting the pill.   We had just discussed the fact that this medication would be raising my blood pressure as it regulated the water in my body.   When he told me that trying to split this tiny pill in half (if he gave me the larger one) would be VERY difficult to do, I said, "It sounds like trying to split that little pill would probably cause my blood pressure to rise all on it's own, without even ingesting it!"    His hands went up in the air as he burst into laughter.   As he was trying to stop laughing, he said, in his thick Greek accent, "That was a good one."     What a cute, little man!

He looked at my BP levels, which I recorded in my little book and took along with me.  The lowest was 88/50 this morning.  The others weren't much higher.   He just shook his head.  

He looked at the remaining water in my feet, ankles, and legs, and told me this just isn't good, even though it was down a little because I have been taking 1/2 of a diuretic pill every day.    He told me that it still looks awful, and he is hoping that by the time he sees me in a month, ALL of the water will be gone.

He looked at my labs and told me that even though my TSH is at 0.06, the free T3 and free T4 are optimal, so he wants me to keep my Armour dosage right where it is.   I know my endo is going to have a problem with this, because I've had my TSH at this level in the past, and she, my PA, and my internist, ALL were unhappy with this.     I, however, agree with him 100%!    The intense, nonstop ear canal itching and peeling that I have been dealing with for 4 very long years has now stopped almost completely since we raised the thyroid meds!!   This is HUGE!   I had read and heard more than once that itchy ear canals is a symptom of hypothyroidism.   I ran that by my PA and my endo, but they did not agree.    I made sure to tell the nephro about this today, so if someone else comes along complaining of itchy, peeling ear canals, he might have a better idea of what is causing it.       Also, my fingernails now all have some white at the tips.   They have not looked like this since I was a kid, I think!   It is very obvious that I needed more thyroid medication!    

He also told me that my aldosterone is still too low (which I already knew because I've had those results for almost 2 weeks now).   He told me, and this surprised me, that even though my cortisol is in the normal range, it is rather low.   He said he does not want to treat that at this time, but we'll keep an eye on it.    I am wondering, though, that if so many people have had normal serum and urine cortisol levels, but had abnormally low cortisol levels when ordering the 4-point cortisol saliva test, maybe my cortisol is actually too low.   I think it's about time I order that kit and take care of this test myself.    

He also told me that my ACTH (pituitary) hormone is also a little low, even though it is also in the normal range.  He said it should be higher.   This is probably why my TSH is always too low when my free T3 and free T4 are optimal.    I had questioned my PA and endo about this in the past.  They refused to believe this could be the case.     Oh, I do have so much to discuss with my PA and my endo at my next appointments!

I asked the neprho if my renin would rise when we got the aldosterone level up, because my renin is also low.   I told him I know it is odd for the renin AND the aldosterone to be low, because I've done quite a bit or research.  This is why I was curious to know if the renin would rise when the aldosterone did, or if it would go even lower.    He said that it is quite unusual for both to be low, but he would like to treat the low aldosterone first, and once we get that level optimal, if the renin remained low, he would address that at that time.  

I had decided that when I did get diagnosed with AI, I would request I take Florinef.  From all of my research, that seems to be the medication of choice.   I was afraid the nephro would want to try something else, and I'd have to try to convince him that I really wanted the Florinef.  To my surprise, as soon as he saw my labs, he told me he wanted me on Florinef.  One less battle to fight!  

At one point, the doctor was writing something into my chart.   I thought of something else I wanted to ask him.  I didn't want to interrupt him, so I said, "I have another question for you, but I don't want to interrupt, so I'll wait til you're done there."   He dropped his pen, looked at me and said, "Let me hear it!"     Wow, I have never had a doctor like this!!!

I told him that I am seriously considering not seeing my endo anymore.   I told him she didn't know how to treat my hypothyroidism; she couldn't diagnose the hyperparathyroidism; and she didn't know how to diagnose the adrenal insufficiency.   I told him I think I'm just going to let him treat me for everything from now on.   He didn't say anything.   I guess he couldn't really tell me that it was a good idea to dump one of my doctors, but I'm thinking at this point that my endo is rather useless.   She was, however, the first doctor to think to test my parathyroid hormone, but once it came back high, she had no idea how to diagnose what was staring her right in the face.

I thought it was rather funny when I dropped off my new Florinef prescription at the pharmacy, and they told me they did not have any in stock, that they would have to order it, and it would be in tomorrow.   This was funny because it would seem NOTHING will ever go smoothly or quickly when it comes to me achieving good health again!    I actually laughed when the pharmacist told me they didn't have any.    

So tomorrow I will start my new medication, and pray that it will work!!!   The Nutty P did tell me that a possible side effect is edema.  Oh, cr*p!!!!    He said that even though it will raise my aldosterone level, which will balance the fluids in my body and hopefully get rid of all the excess water, there is a slight chance the medication could cause edema.    He told me I could possibly still need a diuretic.   Please keep your fingers crossed for me!

Once again, I'm sorry this is so darned long!    I just couldn't omit any of this beautiful day.   I just had to share it all with you all!   After all, you have helped me get to this point with all of your support.   You deserve to know what went on, and you deserve to celebrate too!!  

A VERY Happy, Satisfied, and Optimistic Audrey

Hallelujah, Amen indeed, Audrey!

I could not be happier for you. I am so pleased you've found this doctor and you are finally getting listened too. 

I'm glad the thyroid meds adjustment has worked and I really hope the new medication gets you back to where you used to be (and without extra edema. Surely you can't have more? That just would not be fair).

I know it's been said before, but your ability to keep going despite all the trials you face is really an inspiration to us all.

Here's to better days to come!

Love
Dee
xxx

Just off to bed, Audrey - but wanted to post that this is fabulous news!!
Just sooooooo pleased that you have someone on your side at last.

Lots of Love from Tigerlily xxxx

Well done Audrey
So pleased you are on the road to recovery.
Love A xxxx

Brilliant news Audrey!! I'm glad the lovely Nutty Nephro is on your case and treating your symptoms and that you feel so positive. All good wishes and ultra positive vibes for RECOVERY!!!!!

Love and lots of big hugs
Brigitte xxxx

Thank you so much, ladies! I would like you all to know that it is YOU who inspire ME! I am very proud of us all for fighting as hard as we have to, feeling as sick as we do, to get where we need to be. It is such a great feeling to reach that end goal of wellness! I am not quite there yet, but I'm praying this will be the final piece of my puzzle, at least for a while!

Love you all!!!

Audrey

High five Dr Aud - you did it! Now if I could just book an appointment in your clinic please .......

Jasmine x

Audrey

He sounds like a wonderful doctor and what a story.
I have an Adrenal Tumor so I know just a little about what you are talking about as I had all sorts of tests done.
In my case all the results have come back fine but they will need to monitor me with bloods and scans to make sure nothing changes.
Hope the medication helps.
Mary x

Hello Audrey,
Wow, your new nephro man is really on the ball and knows his stuff and seems to be one of a very rare breed if he listens to you.  I am so warmed to hear that you will be getting treatment that will get you sorted.  I hope you slept better last night with all your good news at long last!
Hugs Sue

Thanks, Jasmine, Mary, and Sue. I am having a rough day today with my symptoms, but I'm still smiling, because there is hope, and help is on the way! I took my first dose of Florinef about an hour ago. I've been reading comments of people who use this medication. It would seem fluid retention and weight gain are 2 biggies. Oh, great! Just what I need! My doctor said it should get rid of all of my water, but then he did mention it might cause a bit of edema. I'm confused. How is it going to get rid of all of my water if it causes edema? I sure hope this works. Gaining weight and staying puffy was not part of my plan here!

Mary, I'm sorry to hear about your adrenal tumor. How long have you known you had one? I was worried about this myself since I get quite a bit of aching discomfort in my kidney area when I'm sitting. I don't know why it doesn't bother me when I'm standing. I guess there is more pressure in that area in a sitting position.

No, I did not sleep well at all last night, and I was very disappointed. I was SO exhausted and SO relieved, I thought for sure I would sleep better. I was awake every hour or 2 and only slept for 4 total hours. Maybe tonight will be better.

I've got more bad news to report today. It's not about me, but people I love. My mother-in-law had her heart cath yesterday. They found that she has 2 arteries which are blocked close to 100%, one artery 40% blocked, and the other 50%. They have transferred her to a larger hospital in the city. I'm not sure what their next move is.

Also, I have a very close friend I met in junior high school when we were 11 years old. She had not answered my latest emails, and I was getting worried, because she was diagnosed with terminal cancer several months ago. She is still undergoing chemo, and a few months ago had a terrible bout with pneumonia. When I came in from running errands today, there was a message on my answering machine. It was from her. I was THRILLED to hear her voice! I returned the call. She is back in the hospital. It seems she never fully recovered from the pneumonia, and because of this, she has suffered a mild heart attack! This is her second heart attack. She had another one about 8 years ago. She sounded good and said she is feeling much better. I hope she wasn't just saying that to make me feel better. I would appreciate any prayers you might toss this way for these 2 ladies. I don't know what is going on lately, but I sure hope things are about to improve.

Audrey

Boy, haven't you got enough to deal with? Great news about your dotty doctor - he sounds a scream - but having 2 people you care about so ill must be really hard when you are so ill yourself. Prayers gladly being sent xx

Thanks for the prayers, Meggy. Greatly appreciated!!

Yes, my doctor is really cute! I wonder what he is like outside of the office. I bet he's a blast!

Audrey

I just love your nutty professor. so glad he is on the ball. Let us know how the med is working for you.  Kathi

Hi Audrey

Sorry to hear about your mother-in-law and your friend.

I hope the medication works and you start to feel better soon.

I have know about the Adrenal Tumor for a few months now but so far I have not had any problems with it so that is why they are going to monitor it to see if it gets bigger or anything starts showing up in the tests.

I have a few other health issues so its always hard for me to know where the pain and discomfort comes from.

Take care

Mary x

I hope your fluid retention takes fright of the new drug Audrey and disappears instead of having a party. 

I'm sorry your mother-in-law and your friend are so ill, but they both seem to be getting the right attention in hospital and that is both hopeful and positive. I'm a strong believer in positive vibes so am sending you vast quantities, for them, and for your health to be restored as soon as possible. Also, lots of cyber hugs coming your way too

Love and hugs 
Brigitte xxxx

Yes, Kathi, the little man is quite a trip! I just love him!

Mary, I'm glad the tumor doesn't seem to be causing any problems at this time. I hope it stays that way for you. I know what you mean about not knowing which problem is causing which symptoms. I am totally confused about my own body! Although, I seem to be checking off the symptoms one by one as I navigate through one disease after another.

Yes, Brigitte, I think my mother-in-law and my friend are in the best possible place at the moment.

Thank you all for the kind words and hugs, etc. Don't know what I'd do without you all!

I do have an update on my mother-in-law. She is scheduled for triple bypass surgery tomorrow morning. I had wanted to be there, but my husband informed me we would have to leave the house at 4:30 a.m., and even though I am awake every morning between 4:30 and 5:00, I would have to get up at 2:00 to be ready to leave at 4:30, and considering how sick and weak I am, that would probably be a bad move. I guess I'll be staying home. I feel bad doing this. My husband said I should stay home because he doesn't want to have to be worrying about me passing out or not being able to stand. He will be busy worrying about his mother. I guess that makes sense.

The new meds haven't made a big difference yet. I read that it can take several months for any real improvement. I did notice that I had quite a bit more energy the first part of the day today, and I was thinking much clearer. The water in my feet looked better this morning. There is still quite a bit of water there, but there was some improvement. It is almost 8:00 p.m. now, and they are pretty swollen again, but I'll take any improvement I can get!

Yesterday afternoon my ankles bot started aching, and so did my left wrist. Muscle and join pain are 2 possible side effects of Florinef. Just what I need! I guess I'm just thinking the worst because nothing every seems to go smoothly or be easy when it comes to my body. Today the ankles and wrist are barely hurting at all. Actually, for most of the day they DIDN'T hurt at all. Trying to be optimistic here. I am in such a good mood now that I am finally getting help! When I went to get gas in my car yesterday, the gas station owner came over to my car and said it was sure nice to see me smiling. I told him I hadn't stopped smiling since my nephro appointment the day before. It is amazing what a little bit of hope does for the soul!

Audrey

Prayers across the Pond, Audrey - prayers across the Pond for you all.

Love from Tigerlily xxxx

Thinking of you Audrey and all the best for your mother-in-law's triple bypass. Keep your hope and indeed your soul shining  

Love and hugs 
Brigitte xxxx

All good thoughts and prayers coming your way xx

Thank you all so much for the prayers and encouragement. I only have a few seconds right now. Our granddaughters are coming down to visit us. I just wanted to let you all know that the bypass surgery was cancelled. They ran some more tests and found that my mother-in-law's kidneys are struggling, and then they spotted a mass behind her pancreas. They are going to biopsy the mass next. Not sure what will follow.

On a brighter note, my girlfriend is coming home from the hospital tomorrow! YAY!!!

Thank you all again!

Audrey

So sorry to hear that Audrey. In the bigger scheme of things - on the universal premise that everything happens for a reason - maybe it was a blessing that her heart problems came to light when they did, otherwise she may never have had the tests which discovered a perhaps more insidious illness until she was a lot further down the line with it. Whatever happens she's at least in the best place where she can be looked after and they can prioritise her treatment options. Prayers for your family Audrey, and PLEASE take good care of yourself through all this. Good news indeed about your friend! Have fun with your granddaughters, enjoy their visit but do try not to over exert yourself.

Love and hugs

Jasmine x

Thank you, Jasmine. You know, I never looked at it that way, but I guess you are right. If she had not passed out, and they had not discovered the heart issue, they would have never found that mass, because she kept saying she felt just fine! She therefore would not have gone to see a doctor, and they would have never found any of this!

We did have a great time with our granddaughters. They sure do make life worth living. Don't know what I would do without them!

We went to visit my mother-in-law this afternoon. The gastroenterologist came in while we were there. I was happy I got the chance to talk to him. They are going to perform an endoscopy and an ultrasound on Monday to take a look at that mass. She was in a good mood today. She just wants to get home to her little cat. It is so sad.

My medication is not doing anything at all yet for the adrenal insufficiency. I know it's only been 4 days since I started taking it, and it will take time. I'm just a tad impatient. I'm still full of water. My BP is still low. Yesterday it was 84/52. It has been lower, so I guess I shouldn't complain. I'm still VERY weak and VERY tired. And I'm a bit worried now because the twitching in my eyelids and my chin have started up again. They're not very frequent and not very intense, but they're there! They never did stop in my lower legs, but those too are less frequent and much less intense now. I think the worst of the symptoms is still the very stiff, painful neck. I'm starting to think this symptom is NEVER going to resolve! I keep reminding myself of the symptoms which have resolved or improved, and I am very grateful for every one of them, but I want them ALL gone!!

Time for bed. I guess most of you are already sleeping, as it is 10:38 here where I live. Hope you're all sleeping well!

Audrey