Nine months post-op, and it looks like I have definitely been cured!!

Oh, my gosh, I am so excited right now!!!    I had a huge disappointment a couple of days ago when my serum calcium from my complete metabolic panel was revealed to be 10.0  (2.5 in UK numbers).    I posted on the forum before that every time I had my calcium tested in a panel AND separately with a parathyroid check, the panel calcium was ALWAYS lower.   If my calcium in the panel was 9.2.  It would be around 9.9 or 10.0 when tested separately with the parathyroid hormone.   It is the separate calcium that the doctors use to diagnose HPT.     So 2 days ago when my panel calcium was revealed at 10.0, my heart sank!    I assumed that meant when the separate calcium level came in, which was tested with the PTH, it would probably be around 10.5 or higher!!    And I was really afraid the PTH would not be extremely low, and you all know what that would have meant!!        All I could think of was, oh, crap, here we go again!!

Well, the separate calcium and the PTH levels were just revealed on the hospital's patient portal, and I could not possibly be more relieved or happier!!     This is the very first time the panel calcium and the separate calcium came back EXACTLY the same at 10.0!!!!    And if that didn't make me happy enough, my PTH was only 22!!!    This is the lowest my PTH has ever been during the past 3-1/2 years, since it was first tested!!       I had a calcium of 10.0 back in February of this year, 3 months postop.   The PTH at that time was 38.     So I guess my 2 remaining parathyroid glands have finally settled down and have normalized!!    

I sure wish you were all here to celebrate with me!!     I still have a lot of problems going on here, but, hopefully, hyperparathyroidism can be crossed off of my list for good now!     Wow, I need a beer, and I don't even like beer!!!      

Love,
Audrey

Yay, yay and thrice yay Audrey!   It's been a long and rocky road for your pHPT journey (there, I said it again, the J word .....  ) but at long last you can cross that off your list! Won't be long before you get everything sorted and you'll be completely well again, thrilled for you Audrey and yet another bit of good news on this forum - hope this is the start of an upward trend! Sending you a big cyberhug  Pass me another beer, hic .......  

Jasmine x

Wow Audrey, celebrations all round   How exciting to have stabbed pHPT in the eye!!! And you're well on your way towards getting everything else sorted out too! You'll be dancing on tables in no time and how wonderful it will be be well; you have so much to look forward to   

Lots of love and massive cyber hugs
Brigitte xxxx

Thank you Jasmine and Brigitte. Yes, even though I awoke this morning with that darned, awful neck pain I have felt now every day for the last 3-3/4 years, and my eyes are aching, and my upper arms are all stiff and painful, and my shoulders are all cramped up, and I still can't hear 100% out of that bad ear, it is a most beautiful morning, just knowing this stupid disease is history for me!!!! Lots of work to do yet, but the load has lightened somewhat now. Thank you both for celebrating with me!!   

Here's something to help you all get through your struggle now.



Audrey

Hi Audrey
Love the pic.
I am soooooooo pleased for you, you've really kicked the PTH butt and when the doc's get to the bottom of your other problem, which I'm sure they soon will, now they are taking you seriously, you will be a new woman.          
I shall raise a glass of something cold and alcoholic to you with my Sunday lunch, cheers Audrey you are one hell of a fighter.
Lots of love Amanda xxxx

Audrey that is good news. I love the picture, I have a gun like that in my gun safe. Don't give me any idea's. lol  Best wishes on concerning the other issue's.       
      Kathi

Such good news, Audrey - and great pic!
I admire your will-power and tenacity in getting to the bottom of all your problems.

Cats to ya, Honey!!

                  

Love from Tigerlily xxxx

Thank you all.    We are ALL fighters!!   It is amazing how we can continue to fight while we're struggling so terribly just to get through each day.   I have never met such tough bunch of people as you all before.    You not only have the strength to carry on yourselves, but you have given me strength to go on when I felt I had none left.   Thank you all for that!

And, yes, I do hope someday we can all get together and toast to our renewed good health and the hard work it took to get to that point!

Audrey

On my way to see my nephrologist this morning.   This is my second visit.    He was the one who told me my thyroid was causing my renin and aldosterone to be low, causing edema and extremely low blood pressure.    I was very pleased with him when I met him 2 weeks ago.  I sure hope this appointment goes as well and give me even more hope.    During the past 3-3/4 years dealing with so many darned issues, I've had my share of disappointments and dashed hopes.    I am praying this guy can finally patch me up and get me back on my feet.

Because of the awful swelling of my ear canals, I have opted to try 1/2 of a HCTZ tablet daily to try to get rid of some water.   This took a lot of thought since my BP is so low to start with.   I've been monitoring it daily.   It has not risen any, but it hasn't gotten noticeably lower, so I'm not sure what the nephro will say about this.  

Although, a couple of symptoms have returned since I started the HCTZ, and I'm pretty sure the HCTZ has something to do with this.    My arms have been very weak, and they have started jerking again.    I'm thinking the renin and aldosterone have decreased again.    I am anxious to discuss this with the doctor today.

I increased my Armour to 105 mg since he told me at my last appointment that it was my thyroid causing my problems now.    He didn't actually tell me how much to increase it by, so I'm hoping this was ok.   I could have waited for his opinion on the dosage, but I guess I'm just a bit overanxious to feel good again, so I did it on my own.   I'm thinking I just might get scolded today for doing these things without asking first, but I'm hoping he'll understand.

I still have some edema, and now that my arms are weak and jerking again, I think something is still very wrong.      Maybe the meds need adjusted, or maybe there is more to this than the neprho originally thought.

I'll post when I get home.

Audrey

Good luck Audrey hope it goes really well.
A xxxx

Best of luck Audrey and I hope he can help you sort out your meds so they're helping you in the best possible way. Looking forward to hearing how the appointment went. 

Love and hugs 
Brigitte xxxx

Yes, keep us posted, Audrey - you need this mystery to be sorted out.

Love from Tigerlily xxxx

Thank you, ladies.   

I am back, but I need to get some lunch. I'm starving! I will say that it was a great appointment, and I really, really like this doctor! I will be back to post in a bit.

Audrey

Ok, I'm back again to fill you in on my appointment.    The nephro now seems pretty certain that I am suffering from adrenal insufficiency, which is what I've been telling my doctors for several months now!        Why does nobody ever believe me?!

The doctor looked at the water in my feet and legs and again told me it was awful.  I told him I have been taking 1/2 of a HCTZ tablet every day for this edema, but it was not doing the trick.  He told me I still have at least 9 or 10 pounds of excess water on my body, and he assured me that he will fix this problem for me.    

He looked at my labs, and then he said something that REALLY surprised me.  I mentioned on here that I increased my thyroid medication by just a bit after my first appointment with him, when he told me he thought it was my thyroid causing all of this edema, which he thought was causing the kidneys to lower the renin level, in turn lowering the aldosterone level.    My latest labs revealed my TSH was a tad low at 0.11.   Normal is 0.34-5.60.    For many years, my other doctors had fits when my TSH would drop below the normal range at all.   It didn't matter to them that my T4 and T3 were in the normal range.   If the TSH was low, that was not good in their opinion, and they'd ask me to decrease my meds.     I thought for sure this man was going to do the same thing.   I was wrong!   He looked at my T3 and T4 and said, "Well, we've got your thyroid hormones right where they should be, mid-range, so we're going to leave that alone.   Your TSH is slightly low, but we don't care about that.  It's more important that we get your hormones where they belong, and now they are."     As I picked myself up off of the floor after falling out of my chair from his comment   , I told him I was surprised he felt that way.    I really like this guy!

He said that my blood pressure looked good today.   At his office it was 143/74.  That is actually rather low for a doctor's appointment for me.   Before this all started with the low aldosterone and low renin, my BP at my appointment was always around 185/92 or so.    When he said it looked normal today, I immediately pulled out my little book, where I keep track of all of my home blood pressures.    He took a quick glance at just one page and said, "Oh, my goodness, you don't have any blood pressure!   This is not good at all!  We have to fix this."     I reminded him that I started taking the 1/2 HCTZ tablet a couple of weeks ago when my ears became very inflamed.   I told him that I know I am full of water, and I know low aldosterone causes a person to swell abnormally from everything, so I thought maybe if I took the diuretic, it might help to reduce the swelling in my ears.    I told him I was very aware that could lower my blood pressure even more, but I've been monitoring it, and it hasn't dropped any lower.    I asked him if maybe I should start taking it every other day instead of every day.   He thought that was a good idea.  So that's what I'll try now.

He told me that after looking at my labs, he is pretty certain now that I have adrenal insufficiency.   He said everything now looks good except for the renin and aldosterone.    He said it would appear now that the low aldosterone is causing the edema, which is causing the kidneys to lower the renin, causing the low blood pressure.  

He told me that normally when renin is low, aldosterone is very high.  I told him that that is what I thought.   I also told him that my body never makes any sense.   He said he thinks my adrenals are struggling right now, but that if they were completely kaput, many more of my lab results would be abnormal beside just the aldosterone and renin.   He said that is a very GOOD thing.    I told him that my body has always been very sensitive, and that when something is even slightly off with my labs, I tend to feel a lot of pretty severe symptoms.   I told him it was that way with the thyroid, with the parathyroids, and now I guess it is like that with the adrenal glands.

He told me that my glucose is good at 95.   Normal is 69-99.   I thought for sure he was going to tell me I need to start watching my sugar intake.   Most doctors would have.   He told me it is in the normal range, so all is well.   He told me with all the other issues I'm having with the adrenal glands, if I was going to have a problem with diabetes, I would already have it.   I hope he's right.  

He kept telling me that he can patch me up, and soon I will be running around again like normal.    That was so nice to hear.

He wants to see me again in 3 weeks.   He has ordered more bloodwork for adrenal function and also another 24-hour urine!!!        This will be my fifth.    I thought he said he was going to order the ACTH stimulation test for adrenal function, but when I got home and looked at the lab slip, he only had a regular serum ACTH test listed.    I am disappointed because I know the ACTH stimulation test is very crucial in diagnosing adrenal insufficiency.     I called his office and asked the nurse about this.   She said she would talk to him about it and get back to me.  She hasn't yet.   I do hope he decides to order this test.

I thanked him over and over again for taking so much time with me and for trying to help me.   I wonder if doctors realize how much it means to us when they actually act like they care.

So even though my neck is killing me today (as always!), my shoulders are all cramped up, my eyes are crossing, my heels hurt, my ears are hurting, and I can't hear, I am having a GREAT day!!  

I did call my ENT doctor this afternoon to see if she could prescribe something for my stupid ears.    I am still getting the earache-like pains in both ears, and I can't hear much out of the right ear yet.    I talked to my son about an hour ago, his ears are doing exactly the same thing!    He never had the swelling in his face, neck, or behind his ear on his head, like I did, but he's having more trouble with terrible dizziness.    He also is having the sharp earache-like pains in both ears, he can't hear much out of the right ear, and it is his right ear that is giving him the most trouble, just like mine!!   This is VERY strange!!!   The girl at the ENT doc's office suggested this might be allergies.    I told her it's hell!!    My son agrees!

I guess I'd better get some work done around here today.    It's getting late.   Hope you're all having a good day!!

Audrey

Great news Audrey  What a difference it makes when a Dr listens and takes note of what you say! He sounds like he really cares and it's good that he's seeing you regularly as well: that must feel like you're completely kept in the loop.

Audrey, you're so brilliant with the 24 hour urine! A little bit of nuisance to help you get well.

I wonder what's going on with your ears and your son's too. Must be irritatingly irritating. I hope you get it sorted out because everything else is looking promising!

Love and loads of hugs
Brigitte xxx

Hi Audrey,
That sounds like you have found a really switched on doctor who is actually prepared to listen to his patients and devise a treatment plan that will be effective for you.  I am so happy that you are finally getting some answers and will soon be feeling all tickety boo again.  It makes such a difference when you feel they have your best interests at heart rather than just being another number.
Glad it was a positive outcome,
Hugs Sue x

Thanks, Brigitte. Yes it seems like this little, mad professor (as I call him) is going to be the one to take care of that last piece of the puzzle! I all him the mad professor because he looks very intellectual, and he is VERY animated. He bounces up and down on his little stool while he's talking to me. His arms fly when he's talking. He's such fun to watch.

I don't know what's going on with our ears, but I sure wish it would clear up! My husband said many guys at work are also complaining of ear problems, and also saying their families are having ear issues. I can't imagine that there would be a virus that would cause this. I'm wondering if it might be some sort of pollen or something outside in the air that is irritating our ears so badly. I just can't imagine! If my ears weren't bothering me, I would really be celebrating the great appointment today, but that is putting a bit of a damper on things. I'm sure it will pass, but it's been 2 weeks now. How long should it take? My poor son has been going to work like this. I don't know how he's coping. I guess I'm lucky I can just be here at home and deal with my pain. I would not want to be out dealing with people while dealing with these stupid ears like this!

Yes, when the nephro suggested another 24-hour urine test, he looked at me like he was almost afraid to say the words. I laughed and told him I'm getting pretty good at that now, so it's ok. I can tell you this, it will sure be nice not having to run to a doctor's appointment every week or run to the hospital for tests every week. I can't wait to get all this crap taken care of! I know you all understand this. All I keep thinking is, what's next?!

I am very excited about this probable adrenal insufficiency diagnosis. I have been researching this for quite a while, and it looks like all of these lingering symptoms could be caused from this. I know it suppresses the immune system and can cause recurrent infections. Hmmmm.......might this be why I continue to get UTIs regularly, when there is no other apparent cause? I'm just praying that this is what has been causing all of this darned neck stiffness and pain. I originally thought the HPT was causing this. Then I thought maybe either the thyroid or adrenals are causing it. I sure hope it's 1 of these things, because I'm about sick to death of feeling this too!!

Yes, I think we're getting close now!!

Audrey

Hi Audrey 
It's brilliant you have found a DR that is determined to see this through and get you back to full health.
Your ear problems sound awful and it's very strange your Son and so many other people are suffering from this, I hope it all gets sorted out.
Over here there seems to be a cough that lasts forever. My husband started when he got hayfever about 3 months ago and has had a head like cold and cough since. He's had a chest x-Ray and that's all clear, 4 other people I know have also had this.
I sympathise with you over the neck stiffness, mine is awful recently, I wake up with shooting pains going up the back of my neck to my skull and have to rub, Ibuprofen gel into it, also I have a sore patch like a bruise on my top right side of my forehead, I think it's where the muscles run from my neck over the top of my head.
Hope your ears clear up soon.
Lots of love Amanda xxxx

Thanks, Sue and Amanda. Yes, it does make a huge difference when you are lucky enough to find a doctor who seems to care and who seems to really want to help. I know my PA really wants to help me. She just isn't sure how to go about it. My other doctors don't really seem to give a darn. The funny thing is, I found this doctor on the internet. I had no idea if he was a good doctor. I had never heard of him before. I took a real chance making an appointment with him. I was afraid he would be another big waste of time and money. Wow, was I wrong there!

Amanda, I'm sorry to hear about your husband's illness. That sounds awful as well! Colds are so darned annoying! I hate them so badly, I have often said I would rather break a bone than have a cold. I have broken a few bones in my lifetime. I still think I'd rather break a bone! I do hope he can get that cleared up soon. Isn't it strange some of the things that are going around?

Also, sorry to hear about your neck. I can really sympathize with you. I'm sorry you too have to deal with that. There are times I think I'm going to go insane if it doesn't stop hurting! Chronic pain really stinks! It is funny that you mention the top right side of your forehead hurting. I have a lot of pain on the top right side of my head, that reaches down to my forehead. How strange is it that we both also have this pain? You are right. There must some connection to the neck muscles.

It is storming outside here this morning. It sounds so nice. I love thunder storms when I don't have to go outside in them. Today, however, is my day to run errands, so I just may get a bit wet. Still love the rain. That is, when we don't get it for 2 weeks straight! I think I'm enjoying it more this summer since I have felt so crappy and don't enjoy being out in the sun. For some reason this summer the sun and the heat make me very nauseous and just plain miserable. This is so odd for me. I have always been a huge sun worshipper. If the sun was out, so was I. That's just the way it was. I sure hope next summer will be much, much better for us all!

Audrey

Hi Audrey, so pleased that things are chugging along nicely with your new Dr Nephro and that you are feeling confident with him. Isn't it strange how these things happen....just when you feel at your lowest and full of despair, you start clutching at straws and somehow the universe guides you in the direction you need to be going in. Clearly you had a guardian angel on the internet that day when you found your Nutty Professor. I just love your description of him, I can just picture him.... I love eccentric people anyway, I find them so fascinating, and if they are clever and intelligent too I'm in my element! In life I do seem to have had wonderfully eccentric people gravitate towards me and I have some lovely nutty friends .... maybe it's because I'm a teensy bit bonkers myself, or so people keep telling me. It has its advantages though when trying to disguise the brain fog as generally people can't spot any difference .... 

I completely empathise with your intolerance of the heat and how miserable you feel after sitting in the sun. I'm the same except my heat intolerance is year round, when every one else is freezing in the winter I'm throwing open the windows, turning down the heating and have the air con on my car - it drives Mr Jasmine so nuts that he bought me a new car with dual temperature control and heated seats so that when I'm basking in the cool air my side of the car in the winter he can heat himself up his side. Audrey, I'm sure I read somewhere that heat intolerance is also one of the symptoms of adrenal problems? When we're all well again we'll be dancing on tables in the sunshine - does the Ritz do alfresco?

Amanda, how strange about the permanent cold thing that Mr Amanda has. I've had the same for about six weeks now and I've just been putting it down to either hay fever, which I don't normally suffer from, or debility from pHPT lowering my resistance to infection and viruses. There must be an epidemic in the UK....although now Audrey has mentioned the suppressed immunity of adrenal insufficiency, and Dr Miles wants me to get my cortisol levels checked out .... mmmm got me thinking now.....

Jasmine x

Thanks, Jasmine. Yes, the force was with me that day on the internet as I frantically searched for a nephrologist. I was going to call my PA and ask her for some names, but her office is about 30 miles from here, and when she has given me doctors' names in the past, their offices are usually near hers. I would rather go somewhere nearer my home if possible. So I figured I'd just find one on my own. I can't believe how lucky I was!

Yes, he is a Nutty Professor for sure. A very cute, little, bubbly, madman. Just love him!

If you do decide to get your adrenal function tested, don't forget to request the aldosterone be tested as well as the cortisol. It is just as important and just as vital for good health. I have had my cortisol tested by a blood draw twice and by a 24-hour urine test once. All 3 times it was revealed to be normal. It was through more research that I learned about aldosterone, and then I happened upon an old defunct forum where a woman had listed the 4 tests she had done that helped her to get diagnosed with Addison's. She had aldosterone and renin listed.

I took that list to my PA and requested that she order those tests for me. If you recall, she told me she really didn't think it was necessary, as there was really no reason my adrenal glands would be having trouble. I convinced her to run the tests. My aldosterone AND my renin were both as low as they could be without being out of the normal range.

I don't know what made me think of this, but I remembered how there was an issue with the diuretics when I was trying to get diagnosed with HPT, so I started researching to determine whether or not any medications or supplements I was presently taking could possibly affect the results of the aldosterone and renin tests. Lo and behold, diuretics also alter those levels!

I stayed off of the diuretics for another week, called my PA's office and requested these tests be reordered. My PA's office obliged. Those results revealed abnormally low aldosterone AND renin levels.

The ball started rolling rather quickly after I saw those results. So make sure you get the aldosterone and renin tested too. If I'm not mistaken, the other 2 tests that woman had listed were the ACTH stimulation test and the 4-point cortisol test; both of which my doctors have not agreed to order yet. The Nutty Professor has just ordered a serum ACTH test, but he wants to hold off on the ACTH stimulation test for now. He said he would have no problem ordering the stimulation test in the near future, but he wants to run some other tests first. I can't seem to get anyone to order the 4-point cortisol test either. I was told I could take care of that myself on the internet by ordering a kit, completing the test, and then returning it via mail to a lab. I would have to pay for this out of pocket, which would cost around $120. I haven't done this yet. I'm still considering it. I'm hoping the nephro will diagnose me without needing this test, or maybe he will order it, so possibly my insurance will cover it.

I have heard that many times the serum and urine cortisol can be normal, but the 4-point cortisol test may reveal a deficiency. I'm keeping this in mind. My most recent cortisol test revealed only half as much cortisol in my system as the previous test 3 years ago. It would seem to me if it dropped that much in 3 years, there just could possibly be a problem very soon if not already.

So don't forget the aldosterone and renin if you're checking for an adrenal problem.

Audrey

Not having a very good day today.   I'm VERY weak and shaky.   Must be from the low blood pressure.   I called my nephro's office to see if there was any chance I could get my appointment moved up.    It had been made for September 16th at my last vist, because he said he wanted to see me back in 3 weeks.    Now, when someone is this ill, why the heck should they have to wait 3 weeks to see their doctor again?!    I know you all have to go through this too, and it's just not right!!    

When I called today, I apologized for being a bother, but I told the receptionist I really was not feeling well.  I told him I feel like I'm going to collapse when I stand, and the weakness all over my body is making me nauseous.    I told them if there was some reason why the nephro didn't want to see me for 3 weeks, I would have to deal with it, I guess, but if there's a chance I could be seen sooner, I'd really appreciate it.    

The guy was so nice!   He said "Well, my goodness, if you're feeling that poorly, you need to be seen!"    He told me if I wanted to travel into town to one of the other hospitals where my nephro works, I could be seen next week, but if I wanted to go to the hospital where I went last (which is about 3 or 4 miles from my home), he couldn't see me til Sept. 9th.    I would have LOVED to see him next week, but I need to get all of the new bloodwork and urine tests taken care of before the appointment, so next week wouldn't work.  : (      I am thrilled, though, that I did get the appointment moved up a week!    Can't wait to be well again!

Hope you're all having a good day!

Audrey

Well done, Audrey - for being persistent and getting a week shaved off your waiting time. And that guy sounded so nice and concerned about you. That is progress on from some of the others you have seen.

You'll be doing the blood work next week so that will take care of those days and then you'll be seeing Dr Nephro again.

Look after yourself in the meantime and have a restful weekend.

Love from Tigerlily xxxx

Hi Audrey you sound really poorly, it's good that you are seeing Nephro sooner.
Be very careful and look after yourself in the mean time. Hope you feel better soon.
Lots of love Amanda xxxx

I'm sorry to hear you're feeling so poorly, Audrey, but pleased your persistence has brought your Dr Nephro appointment forward. It's so difficult to have to wait when you've suffered so much already! Life isn't fair. Once you've got the tests done next week, you'll be closer to finding out when your recovery can take over your life instead of your illness. 

Sending you loads of comforting cyber hugs

Love 
Brigitte xxxx