My Adrenal Insufficiency Saga Continues.

First topic message reminder :

Well, I have a few new things to post here tonight regarding my ongoing struggles.    

I did call my nephro after I had complained a couple of weeks ago of my new diuretic (Edecrin) not working.  My nephro was not in that day.  The doctor on call great increased the dosage to jump start the water loss.   Instead of taking 25 mg daily.   He wanted me to take75 mg that first day and then 50 mg every day thereafter.   It worked great that first day, and fairly well the second day, but it has seemed to lose its effect.   I lost 4 pounds of water over night that first night, and I lost 2 more pounds the next day.  Since then the scale has gone up 3 pounds!   I am still VERY full of water!   Still pitting all over my body.   Since so many people on Florinef (the adrenal medication) gain large amounts of weight, I can't be sure if the scale if moving upward from water or from fat!   I guess I am hoping it's water, because I will probably be on the Florinef for a very long time; maybe forever!   But, then again, if it's water, that is not normal, and we need to get rid of that too!     I will be seeing the nephro tomorrow.   It's been a month since I've seen him last.    I have a LOT to discuss with him.   This is on my list.

The Florinef I started taking 4 weeks ago seems to be helping some.   My blood pressure is staying more normal now.  It stays mainly between 100-118/50-70.   The systolic pressure stays in a pretty narrow range, but the diastolic pressure varies greatly, still dips into the 50s, and every great once in a while, into the 40s.    It is definitely improving though!

I am not as weak as I was before I started the Florinef either, and this is very nice!    I'm still not 100%, but quite a bit better in that respect.

I am no longer nauseous, and that is also VERY nice!  

That terrible dryness and soreness in my mouth, on my gums, and on my tongue, which started a little over a month ago, started to improve 3 days after I started the Florinef.    Since low aldosterone suppresses the immune system and causes a person's allergies to be worse (and I had questioned a possible sulfa allergy from the HCTZ), I am unsure if it was the Florinef raising the aldosterone level or me stopping the HCTZ (which contained sulfa), or maybe BOTH, that helped to heal the inside of my mouth, gums, and tongue.   To be honest, I don't really care.   I'm just happy it doesn't hurt in there anymore!  

My latest lab results are in, and they are a little disappointing.   I was hoping my aldosterone and renin would both be much higher than they are.   The first time my renin (a kidney enzyme) was tested in July, it was found to be 0.28.  Normal is 0.25 - 5.82.    When I learned that HCTZ can raise renin and aldosterone levels, I stopped taking the diuretic for a week and retested these levels.   This time the renin was 0.18.  Too low.   After being on the Florinef for 3 weeks, I had blood drawn again.  This time I had been taking the new diuretic, Edecrin.   I did some research, and I could not find anything mentioning that it affects renin and aldosterone, so I did not stop taking it before my blood was drawn.   This time the renin was 0.09!!

My aldosterone was just a bit more encouraging this time.   When it was tested the first time in July, it was found to be 4.  Normal levels in a sitting position is 4-30.    After staying off of the HCTZ for a week and retesting, it came back at <1.    The next time it was tested, I had only been of of the HCTZ for 4 days before the blood was drawn.  That time the result was 2.     It was then that I was started on the Florinef for the adrenal issue.    This time, as mentioned above, I stayed on the diuretic (Edecrin) right up until and beyond the blood draw.   This time it was revealed to be 4 again.   My nephro wants this level to be at least 8.    I am very afraid he is going to want to raise the Florinef dosage.   I am afraid because of the side effects.  

Florinef raises glucose levels.   My glucose has been between 89 and 94 for years.   When tested last week, it was 101!   I cannot afford to have it go any higher.   There is a lot of diabetes in my family to begin with.   This is not good!   I have spoken to a few different people in support groups who now have steroid-induced diabetes.   I REALLY do not want to deal with this too!

Florinef also causes weight gain.    I have had to watch my weight my entire life, and I have watched it!   My family thinks I'm crazy, because at the age of 61, I STILL refuse to eat things they do, for fear of gaining weight.    And I am NOT thin!     They all wonder why I still care so much about my weight.   Diabetes is one reason.   Of course, I do not want to look any worse, but health is also a big worry for me.

My calculated osmolality is very low, which indicates overhydration.   No big surprise there.   It is, however, up to 276 from 274.  I guess that's some improvement.    

My urine specific gravity is also low.  Also expected with severe edema.  

Sodium had come up slightly.  That is good.

Potassium has me a bit concerned.    Low aldosterone causes high potassium.  Mine had become high/normal, but never rose above the normal range.  For many years while I was taking the triamterene/HCTZ, I had to take potassium supplements, because HCTZ lowers potassium.   When my nephro prescribed a new diuretic recently, he intentionally prescribed one which was NOT potassium sparing, because he was afraid my potassium would rise too high.    Well, my potassium dropped from 4.2 to 3.6.   Normal is 3.5-5.1.    I am going to ask tomorrow if maybe we should start supplementing the potassium once again.

I noticed my magnesium is now very low/normal also.   It looks like it has been falling steadily for a couple of years.    It was 1.7.  Normal is 1.5-2.9.   I have been taking magnesium supplements for years, and it is still that low!    I have increased it a little now.   Many of my symptoms can be caused from low magnesium and low potassium.    I am hoping these symptoms will improve after increasing both.

So I did more research, made more lists, talked to more people, and printed more material to take along with me to my appointment tomorrow.    I am happy I'll get another chance to see my favorite doctor, but I'm a bit scared because once again, my body is not doing what is supposed to, and I don't know if even this doctor will be able to figure this all out!    

Onward!

Audrey

All meds should have a use by date so as long its still in date you would be ok. 

I totally agree that a lot of our problems could be thyroid related, I'm pretty sure that is my problem right now.

Oh well we must soldier on 

Nelly

Thanks again, Nelly. Yes, if I find any, I will check the use by date. I hope it will still be good. I'd better get in there and do some searching now.

Yep, onward we march, as rough as the battle may be!!

Audrey

Hi Audrey

I also find your long posts very instructive - and yes, your post-op diary would make a good book!

In your shoes, I wouldn't wait any longer than today for the call back from your endo (and I would ring them again now!) otherwise you may be without the Synthroid for the weekend.

Keep on keeping on, girl - and keep us posted all the way!

Love from Tigerlily xxxx

Hi Dr Aud
You are such an inspiration to us all, you keep on keeping on until you get those answers and I really hope that you have at last got to the bottom of your health problems.
Wouldn't it be wonderful if this was the answer, I'm keeping everything X'd for you.
Lots of love Amanda xxxx

Hello Audrey

I am new to the forum and posted my story a couple of days ago on the New Member page.  However, I have been following your trials and tribulations for a few months and it has to be one of the worst cases of muddled thinking, and disjointed medical care that I have ever read.

As you will know from my posting, I have just been diagnosed with MEN 1 which followed nearly three years of being messed around by my local endo although he already knew I had hpth when I originally saw him.   This was mostly because he wouldn't do anything about it so eventually I got so fed up and angry that I changed Consultant.

One of the things that comes over loud and clear from my own, yours and almost everyone else's story is that there is no 'joined up' thinking, and little team work amongst the various medical disciplines.   Empire building seems to be the way many doctors still operate, and I thought this way of working died out in the 70s and 80s.   It is all about, or should be, the multi-disciplinary team where patients are discussed and treated in the 360 degree round.   This is the way it works in the major teaching hospitals now in the UK.

I am so sorry that you have had such a fight to get well and continue to do so.   You have found out so much about yourself, your meds and treatment by research it beggars belief that fully trained doctors can't figure it out.   What on earth have they ben spending their time and our money on???

I hope that you will be able to get a resolution soon.

Anna

Thank you for the kind words and support, Tigerlily, Amanda, and Anna. It is so nice to have you all by my side through all of my struggles.

No, Anna, the doctors don't seem to have a clue how to put anything together! A little common sense would go a long way! You would think they would have some idea that many things are related and connected, and they would want to try a bit harder to figure things out!! It is a shame we have to do so much of their work for them!

I did want to say here that I did make the switch from Armour to Synthroid for my thyroid. I started the Synthroid yesterday. I'm not feeling any difference yet with my neck, upper arm, thigh muscles, which was one of the main reasons I wanted to make the switch, but I'm guessing since I was taking Armour for about 10 years, it's going to take a while to undo anything negative that it caused, if there is even a chance of undoing things at all. So I will try to be patient. Seems that I've had to do a LOT of waiting over the past few years! I know you all have too!

And here is how the medication change came about. As you know, I called my endocrinologist 2 days ago and left a message on her nurse's answering machine. I told her that I had discussed making the switch with the doctor at my last appointment 2 weeks ago. I stated that I was now ready to make that change, and I needed the new prescription at this time.

Yesterday, a day after I made that call and left that message, I because furious that the nurse had not yet returned the call, so I called my nephrologist's office to ask him to take care of this for me, since his receptionist had previously told me they would be happy to help if I wanted them to.

When I made this call yesterday to the nephro, the receptionist said she would be more than happy to help, and she said she certainly understood why I was so unhappy with my endo. I I made this call at 11:15 a.m. The receptionist told me she would be busy with patients there until noon, but she would talk to the doctor immediately afterward and get back to me. I had to leave the house after I talked to her. When I arrived back home, there was a message on my machine. It was from her. She said the doctor ok'd everything, and she had called the prescription in to my pharmacy for me. I checked my answering machine to see what time she had called. It was 11:35! It only took this woman 20 minutes to talk to the doctor, call in my prescription, and call to inform me of it all!!! Now, THIS is the way to run a doctor's office!!

I figured my endo's nurse never would return my call from Tuesday, because the last time I called, a few months ago, she never did return the call. I think I mentioned this earlier. Well, this afternoon, my phone rang. It was finally her calling back, 2 days later! This is inexcusable! I was not going to bother answering the phone, but then I realized I had too much to say not to. So I answered. She started off by telling me the doctor had ok'd the Synthroid, and she would be calling it in for me. I was so ticked off, I very sternly said, "Well, you're a little too late. It took you so long to return my call, I called my nephrologist and asked for their help with this. I wanted to stop taking the Armour because of things that were happening to me. I needed the Synthroid quickly." She said, "Oh, ok." I said, "I called them yesterday, and within 20 minutes she talked to the doctor and called in the prescription for me. That was nice. I have no idea why it takes you people so darned long to return phone calls." She said, "Well, I talked to you on the 28th; that was 2 days ago." (First of all, she did not talk to me; I left a message. And secondly, yes it was 2 days ago; that's the problem!) She continued by saying, "I talked to the doctor, and I was just calling to let you know I was going to call in the prescription for you." She was trying to make it sound like she was doing her job and doing me a big favor. I said again, "Well, you're a little late." She said, "So you're going to followup with your nephrologist for the thyroid?" I said, "Yes, I think I will." She said, "Ok, I'll tell doctor. Thank you." Then we said goodbye. I hung up the phone, walked into my living room, and I headed right back to the telephone. I wanted to make sure the endo knew WHY I was going to followup with my nephro! I figured the nurse would probably simply tell endo that I decided to let the nephro handle it all and leave it at that. Then the endo would probably be upset with ME! So I called back. Of course, the nurse didn't answer the phone, so I had to leave another message. I said, "Hi, Sue, this is Audrey again. I just wanted to make sure you tell Dr. R******n WHY I am following up with my nephrologist instead of letting her handle this. I would like her to know that I did contact her first for help, but it was because it took so long for the return phone call, that I called the nephrologist. I want her to know that I did give her the chance to help me. Thanks. Bye." And you know what, I am VERY happy I called back to leave this message! And to make sure the endo gets the full story here, I am going to write her a letter!!! I didn't tell the nurse that I wouldn't be coming back anymore. I probably should have. That will be next, and I am VERY close to doing that. There is no reason why I need the endo anymore. She didn't know how to diagnose the hyperparathyroidism, and she didn't know how to diagnose or treat the adrenal problem! As a matter of fact, maybe I'll tell her this in my letter. I'm not sure yet. I'm tired of being treated so poorly by people I am paying!!

You know, when I was a kid, I was VERY shy! I was afraid to speak to anyone. As I have gotten older and experienced life and been mistreated from time to time, I have learned to open my mouth! I hope the darned nurse gets fired or at least gets reprimanded for taking 2 days to return a phone call of a person asking for help!

Audrey

Audrey, I'm glad you have it all sorted out, but what a palaver everything is with your Endo! I might have guessed you would have zero assistance there but what a difference with Dr Nephro and his receptionist! That's how it should be. 

I think, Audrey, that you have become MIGHTY in your search for good health and you astound me with your painstaking research and knowledge. However, do please calm down now and watch that goat video we were talking about earlier a few more times. Your blood pressure will be sky high in a minute!!!!! 

Many hugs and love 

Brigitte xxxx

That was cute, Brigitte! This is so funny. I just took my blood pressure, and it WAS up a bit! Although, after not having much of a blood pressure for months with the adrenal problem, it was sort of nice to see. Yes, those goats are simply precious! Hey, Dr. Norman should not call other doctors goats and monkeys. Goats and monkeys are pretty darned neat! Maybe he should just call the doctors rocks.

Thanks for the hugs! Those are always appreciated!! I'm sending some your way too.

Audrey

Well, It seems things are not ready to settle down yet for me, but I think we're moving in the right direction.

I've been having a lot of trouble lately with increased muscle cramping in my neck, shoulders, and upper arms. I was hoping this would all improve when I switched from my Armour thyroid medication to the Synthroid, but it seems to have worsened. A huge disappointment for me. As discussed on other threads here on the forum, it would appear I needed that T3 from the Armour, and maybe I needed more of it.

Yesterday I had to make 2 phone calls to my doctors. First I called my PA. I needed to ask her for a lab slip to have my free T3 tested. When I saw her on Friday, she gave me a slip for TSH, free T4, and total T3. I have no idea why she omitted the free T3, but I do need that. That has been taken care of. The lab slip should be on its way in the mail.

Then I needed to call my favorite doctor, my little, nutty professor, the nephrologist. They wanted me to call to let them know how the new increased dose of diuretic was working, and I also wanted to discuss these horrible increased cramps and also the increased heart palpitations. I was thinking it must be the thyroid causing these symptoms, and this is what I told the receptionist when I called. I told him I am also very exhausted all the time again too. Sounds like thyroid, right? The receptionist said he would page the doctor, relay all of this to him, and get back to me as soon as he could.

About 20 minutes later, he called back. These people are amazing! He said the doctor also wanted me to get my potassium and magnesium levels checked. I understand this because of the muscle cramps and palpitations. I told him that's a great idea. He said he will put that lab slip in the mail, and I can get that done when I get the thyroid levels checked in a couple of days. I thanked him for everything. I promised that once we get some of these things resolved, I won't be calling them every 5 minutes. He laughed and told me it was no bother, but I know it is a big bother for them. So that is on the way to my home also.

After I got off of the phone I started thinking about all of this. When I started taking the Edecrin (diuretic), I remembered it not being a potassium-sparing diuretic. The reason we did this was because with low aldosterone, the potassium is usually high. Mine was never abnormally high, but it was 1 or 2 points higher than normal when the low aldosterone issue started. Before all of this started, my potassium was always low/normal and even did drop too low once. I also know that Florinef, which I take for the low aldosterone, lowers potassium also. Hmmmm............ I think the little, nutty professor just might be onto something here. I also know that low potassium can cause edema. It would all make perfect sense if my potassium is now too low. That could be why the edema is not budging, even when taking 3 pills a day! And taking 3 pills a day of a diuretic which can deplete potassium, would only be making matters worse, if low potassium is the cause of the edema, I would think.

I am now wondering if it has been low or low/normal potassium for years that has been causing the edema. The nephro told me at my first appointment that he felt it was the edema that was keeping the kidneys from producing renin, which in turn was keeping the adrenal glands from producing and secreting aldosterone, which was causing my blood pressure to plummet and making me terribly weak and nauseous. I'm now wondering if maybe we would just keep my potassium higher, we might be able to get rid of the edema, which would allow the kidneys to start producing renin again, which would increase the aldosterone from the adrenals, which just might solve the whole mess! I hate to get too excited here, because I've been down this road before, but it sure would be nice if it was that simple!

I was going to go for the bloodwork on Friday, but if the lab slips arrive tomorrow, I will be going on Thursday. Low potassium is nothing to play around with, and I sure could stand to get rid of some of this muscle pain!

I have an appointment tomorrow with a new gynecologist. I refuse to see my long-time doctor after he made that remark to me about drinking a lot of water to cure my recurrent UTIs. If you recall, I had told him during my visit that I drink anywhere between 8 and 14 eight-ounce glasses of water a day. When he was leaving the exam room, he patted me on the leg and said, "Just drink a lot of water, you'll be ok." I still can't believe he said that! I refuse to see a doctor who either does not listen when I talk or does not believe what I say. I have moved on.

Seems like my entire life now is one appointment after another. So tired of it all. I know you all understand.

Onward!!

Audrey

Audrey - I think you are getting closer to having all the pieces (and problems) fit together. Also, it was probably time to move on - away from the leg-patting-drink-more-water doctor and also away from your previous endo.

Your nutty nephro sounds as though he is chasing up on all the possible causes - so great to have someone on your case whom you trust and can talk to. And his admin team seems to work so well on the patient's behalf as well.

Great news! Keep on truckin', Dr Aud, and keep us posted on further developments.

Love from Tigerlily xxxx

Thanks, Tigerlily. It is funny how every time you hit rock bottom and feel there is no hope, something will happen to once again give you a bit of much-needed hope. I do hope we are all getting closer to a better life!!

Audrey

I agree with Tigerlily  keep the nutty nephro and if possible whittle down the others. Sometimes it would be to confusing if there both trying to deal with the same issues. Hugs to you Kathi

Well, Kathi, at this point I have pretty much handed all of my issues over to the nutty nephro. I only got the script for the thyroid bloodwork from my PA because I was in her office last Friday, and I wanted my levels checked due to all of the cramping and edema going on. The nephro will be treating this as well as the adrenal issues. Heck, as far as I'm concerned, if he did pelvic exams, he could have that job too! He's a very intelligent man, and I do think he will eventually crack this case! I would trust him with anything and everything. He is the only one of my doctors so far who has not said something totally stupid which I know to be untrue. I hope that continues. I start to lose faith and hope when they start doing that. It makes me think I'd be better off just doing my own research and then telling them how to treat me. Sad, isn't it? I've said it before; he seems like the only one of my doctors with a fully functioning brain. That too is very sad.

Thank you for the hugs. Always so much appreciated!

Audrey

Nutty Nephro for the world, Audrey! I'm sure he will crack your case in the end, it's just the careful testing and trialling that has to be observed and recorded first so he can see the wood from the trees. It's great you have faith in him and his staff because it's obvious it gives you a boost, even through all the bad bits. 

As I wait to be re-referred to my Neurologist, (who has so far found at least 2 excuses not to see me since I was sent home from hospital), I think about the fact you raise that most doctors don't seem to have a functional brain. The last time I saw said Neuro, he told me every headache was a migraine... It didn't give me much faith in him because some of my headaches are due to benign tumours and epilepsy, (proven by MRIs) and a migraine headache is different.  Unfortunately, I don't get to appoint a new one though. Possibly, he wouldn't see me and would shove me off to the underling with the rucksack full of reflex hammers who I saw when in hospital. She just loved hitting me with those things! 

Love and loads of hugs 

Brigitte xxxx

Yes, Brigitte, I am very happy to have found my little, nutty nephro, and to think I found him on the internet, because I was tired of seeing the doctors my other doctors referred me to. I took a real chance doing that, but it looks like it worked! I just got back from my gynecology appointment. This doctor was a new one too. I actually found her on the internet also. I had no idea who she was. I LOVE her! I was thinking she would be an Indian woman because of her name, but she wasn't. I don't have a problem with Indian people, but I can't seem to understand them when they speak. I'm not saying it's their problem. It certainly could be me, but I need to be able to understand my doctors. She was not Indian, so I could understand her perfectly. She was in no hurry and sat and talked with me for quite a while. It was a very pleasant visit.

I learned something today that might be of some help in diagnosing all that is going on with me now. I showed her the edema in my legs. It has been pitting badly now since June. I told her we thought at first it was from my thyroid. She told me that edema caused by the thyroid is not pitting. She said a person will swell due to fluid, but it will not pit. I am not sure if she is right, but if she is, I guess we can rule out the hypothyroidism as the cause of my edema.

It sounds like you are having a bit of trouble with your doctors. I understand about the headaches. It's a shame your doctor doesn't. No, not every headache is a migraine. Where do these doctors go to school?! I'm starting to wonder if they even do!! I am losing faith in all doctors, and that is so sad. And my gastroenterologist had the nerve to tell me to stay off of the internet for my medical knowledge! I think maybe they should all get on there themselves!! I think maybe you need to find a new neuro. It doesn't sound like yours knows his nose from his ear either! Geez! Good luck!

Audrey