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

First topic message reminder :

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

Feeling too hot, or too cold can also be a Thyroid symptom.
Cold can be Hypothyroidism and hot can be Hyperthyroidism.

Edwin

Ohh Audrey,
I am so sorry to hear you are feeling rough and so poorly, that is so miserable.  I am glad that you have managed to get hour appointment brought forward and will be seen sooner.  I really hope this guy can get you sorted and fathom out what is going on and get you all tuned up.  Just sending a gentle hug  and get plenty of rest.
Sue x

Thank you all for your comments, good wishes, and hugs. Sorry I couldn't thank you sooner. My precious, little granddaughters were here all day yesterday to visit us, and I didn't have a chance to get on the computer.

Yes, I am VERY happy I was able to get my appointment moved up by a week. I am really going through a rough period here. I am so weak, shaky, and nauseous now I stay in the house unless I absolutely have to go outside. The sun and the heat make me much more nauseous, and I just can't deal with it. I just can't tolerate the heat AT ALL now. I had a great time with our granddaughters yesterday, but I was REALLY struggling to get through the day. Everything was a huge effort. I an extremely exhausted all the time now, so I had no energy to run and play with them. My heels still hurt badly when standing, so when the older granddaughter wanted to go outside to show me her gymnastics moves, I had to sit in a chair and watch. I am SICK of being sick!!!! I thought after parathyroid surgery, I would get my life back. All I got was more symptoms and more sickness! This is not right!

I know I'm very close now to being well again. At least, I sure hope to heck I am. This reminds me so much of the hyperparathyroid experience. The only difference is that I did not have to wait 3 years to get diagnosed this time! Though, I don't know why I keep getting illnesses which can't just be treated immediately when symptoms arise! The wait for treatment, as you all know, causes such a feeling of desperation and anger. I just want it to be over!

Thank you all for caring. Better days are ahead for us all!!

Audrey

Ear appointment went well! Doctor says she's thinking maybe allergies might be behind all of this ear crap. She said ragweed is REALLY bad right now. I was tested for allergies about 6 years ago, and I do know I am allergies to several things, especially trees, but I've never had this much trouble before! I'm really thinking that the adrenal insufficiency which causes excessive swelling could have something to do with why I had so much inflammation with this ear problem.

She said my ears look wonderful right now, even though I'm still having some pains inside, and my ear is doing a lot of clicking when swallowing. She said it all should be fine in time. She does want me to come back in a month to see how the severe ear canal itching is. I'm hoping my canals have been itching so badly for the past 4 years due to hypothyroidism. Now that my medication has been increased, I'm really hoping the problem will resolve.

She once again warned me against using Q-tips to clean my ears and wants me to start coming in every 3 months to let HER clean my ears for me. For some reason I have more earwax than usual. I'm going to be optimistic here and think that maybe all the excess fluid in my body right now might have something to do with this problem too. It might not, but I'm hoping it is.

One more problem taken care of. Onto the next!

Audrey

Audrey
Glad your appt went well and your ears are healing. It's good she wants it keep an eye !!!! on your ears   
Take care of yourself.
Love Amanda xxxx

Good news Audrey   I'm pleased that the ENT Dr is going to keep you under her wing and look after your ears long term. 

Love and hugs 
Brigitte xxxx

Great news, Audrey - one down and just the nice little Dr Nephro to go.

Stay on that horse, girl!

Love from Tigerlily xxxx

Hi Audrey,
It is good to hear that your appointment went well and I hope your ears are feeling an awful lot better than they did earlier.  How is your son doing?  I too wonder about allergies and although I never have had hayfever I was surprised to read that you can develop it at any age.  I have been having problems with my ears too, just not able to pop the pressure and sometimes it has been really painful and thinking it maybe reflux related.  I started the Nasonex Spray again with slight improvement and finally last week I bought some OTC anti histamines.  I took one Friday and within half an hour my left ear had popped, I repeated it on Saturday and finally my ears are a lot more comfortable,  it has not gone completely but is much reduced.  Did they prescribe anything for your ears?? 
I am glad you made progress,
Hugs Sue

Thanks, Amanda. Yes, things are once again looking up a bit for me. Now to get this darned adrenal issue under control! Then I will be a happy camper once again!

I hope you're having a good day!! Well, I know you're suffering terribly so your day is probably not really "good." Maybe I should say I hope your day is bearable.

Audrey

Hi there - just want to share that I have just had my parathyroid removed!!!! Hurrah - my calcium went down to 2.2 but the strange thing was they have given me some calcium tablets to take for 2 weeks!!!!!!! Plus a vitiman D tablet for 2 weeks.  My surgeon reckoned he didn't think I needed them but after discussing this with 2 other surgeons decided for 2 weeks to give me these tablets.  Can anyone tell me is this normal??????
Also how long is it before the scar heals?  I am not that bothered just pleased to get it out of my neck but its 6 days now and I still feel odd - is it the anesthetic perhaps?  Any info on post op would be greatfully received - SAL

Fantastic news - can I ask what you mean by "odd"? Are you feeling unwell? Do you feel any better than before you had surgery? Sorry to pry, feel free to ignore me:-)

That's great news Sally, so pleased for you. Did you have your surgery in Ipswich? I seem to recall you were going to see a surgeon there .....? You might be feeling a bit hypocalcaemic whilst your remaining parathyroids 'wake up' and start doing their job, and this may be why you are feeling a bit odd, and why the medics have given you some extra calcium for a while. Did you have your PTH measured after surgery and when are they going to check your calcium and PTH again? 

Hope your clusters headaches have stayed out of cycle in the meantime Sally? They may never recurr now you've had your parathyroid problem sorted out - fingers crossed!

Jasmine x

Audrey so happy you have found some good doctors, I know there out there but sometimes hard to find.

Sally it is common in the USA  to be given calcium pills post surgery.

Thanks for your replies - yes had Groot Wassink at Ipswich - very nice man!!
Am having blood checked on 18th Sept then seeing him a couple of weeks later.
I think the 'odd' feeling maybe anesthetic don't seem so bad today - can't really describe it - but nothing bad - perhaps you are right it will take a while for things to go back to normal hopefully!!
Only thing I know is my calcium went down to 2.2
No cluster headaches since Jan!!!! So heres hoping

Hello Meggy no I need help and so am quite happy to tell you anything you need to know - I think as its only 6 days since op I haven't had nausea!!!!  My bones don't seem to ache as much so am praying this has helped - I am not sure how I answer you yourself on here so had to do this open reply
Anyway hope to hear from you soon SAL x

Hello Sally,
Ohh such good news to hear you had your op and are now getting well again.  I am sure that it can take some time to readjust to a normal level, your other parathyroids have been sleeping whilst your mega gland has been in overdrive.  They just need to wake up and get going again , hence being given the calcium.  I am really pleased and wish you all the best on your way to full recovery.
Take care of yourself,
Sue x

Hi Sal

If you want to send a private message to someone click on their user name which will take you to their profile page, then click on contact.

Your post op experiences will be useful info for lots of us so do keep posting, good and bad 

Take care

Nelly

That's wonderful news, Sally!!   So very happy for you!  

I'm sorry it's taken me so long to reply to this.   We had another family emergency yesterday morning.   I will explain in a minute.   First I would like to congratulate Sally on reaching this goal and getting the chance to live again!!    Another adenoma bites the dust!!    

Yes, it is the normal procedure at the NPC in Tampa to take calcium supplements immediately following surgery.   Many times calcium will drop too low when the adenomas are first removed.    Mine did not.    I took the supplements as prescribed until my calcium was tested 4 weeks after surgery and found to be 10.2.   I stopped all calcium supplements at that time.

Ok, now I will tell you about our exciting day yesterday.    I don't know if you all remember that my daughter-in-law has Turner syndrome.    With Turner, a person is born missing a chromosome.   I know this sounds like they are mentally challenged.  They are not.  She is perfectly normal in that respect, other than having the usual Turner symptom of not being very good at math.   Turner victims are very short in stature (she is 4'11" tall), their internal organs sometimes to not mature (she is unable to bear children because of this), and they have a very weak aorta, which can tear, and if not caught early enough, can cause death.  They also have a tendency to develop cataracts early in life.  She was 34 years old when she had to have cataract surgery on both eyes.    She just turned 37 a couple of weeks ago.   She has had a very rough life!

Last year she awoke with a loud popping noise in her neck, followed by a lot of pain and vomiting.   My son was at work at the time.   My daughter-in-law is a very nervous, little person.   She has had trouble before vomiting fairly often due to nerves.   So when she called my son, he assumed it was her nerves again and told her to get a glass of milk and go lie down.  He told her he would be home soon.   Well, it turned out he would regret his advice, as it was MUCH more serious.    Actually, we can all tease him about this now, but it was not funny at the time!   Her aorta had torn!!    

My son took her to the hospital when he got home and saw that it looked to be much more than nerves.   They did some tests and scans at the hospital and told her everything looked good.  ????    While she was waiting for the test results, she suffered a minor stroke!    My son was with her when this happened.   He realized what was happening and called for help.    

In the meantime, the wonderful tech who had done her scan took a closer look at the results and noticed the tear in her aorta!    Two doctors had looked at this and missed it!!!       God bless this woman, as she saved my daughter-in-law's life!!     I actually ran into this woman while at the hospital having a scan performed on myself a year later.  I had not met her before this time.   She recognized my name.   I made sure to give her a GREAT bit hug!

Anyway, my daughter-in-law was then life-flighted to a big hospital in the city, where they performed an 8-hour emergency surgery to repair her aorta.   The surgeon told us had it not been caught when it was, we would have most likely lost her.   Again, God bless that tech!

Well, yesterday morning, my daughter-in-law woke up and was getting ready to eat breakfast when she felt a pop in her neck, followed by pain and nausea!  She called my son.  He certainly did not suggest getting a glass of milk and lying down this time!   He dropped everything at work and drove home as fast as he was able.   He took her to the hospital ER.     They did some scans and said everything looked good.   Hmmm........    Then they took her by ambulance to that same big hospital where she had her surgery last year, just to make sure their diagnosis was correct.   They weren't taking any chances!      

They did a TEE test.   For those of you who are not familiar with this (as I was not until yesterday), that stands for transesophageal echocardiography.    They wanted to go down her esophagus to get a better picture of the back of her heart, because they wanted to make sure her valves all looked ok.   Turner patients also are born often with a defective valve.   Instead of one of her valves having 3 flaps, it only has 2.   They told her last year that it didn't look bad enough to need repaired last year, but that it would need to be replaced at some point in her life.   The valve looked good.  The entire heart looked good.   They determined that for some reason her aorta was inflamed.  It was not torn this time, thank goodness!!     Not sure why she heard the popping noise this time, but it was not torn.

They said no surgery was needed this time.   Her blood pressure was high, which is not good anyway, but when you have a weak aorta, it's REALLY not good!    They increased her dosage and they're keeping her there for a couple of days for observation.    She  might be coming home tomorrow.    

It was a rough day for us all, but thank God everything turned out very well!

I had planned on going to the hospital myself in the morning to get my new bloodwork taken care of.    I also had to pick up my 24-hour urine jug and a random specimen cup.   I REALLY needed to get this all taken care of yesterday, because if I didn't, there was a chance the results might not be back in time for my nephrology appointment on the 9th!    All I really wanted to do was get over to the other hospital to be with my son and daughter-in-law.

When my son called and said they were transporting my daughter-in-law to the bigger hospital, and that she was stable and looking well, I made the tough decision to go ahead over to the hospital to get my tests taken care of.   I figured if they were crowded over there, and I saw that it was going to take a while, I would have to just leave and come back another day, and hope the results would be back in time.    I am so darned anxious to get this adrenal issue taken care of, I really didn't want to screw this up!   I really don't feel well AT ALL.

The hospital was not crowded at all, and when I explained the situation, they rushed me through.     They know me well over there.   They were happy to help.    

They drew 9 tubes of blood yesterday!   This is a record.   Eight was the old record.    I had a big problem last night, though, and I am wondering if this blood draw might have had something to do with it.   I mean, adrenal insufficiency causes low blood pressure and low blood volume.   I wasn't thinking of this at the time!    I awoke at 2:30 this morning with HORRIBLE cramps on the tops of both feet, in both shins, and both calves.   I can tell you these were the worst cramps I have ever had, and I've had a LOT of cramps in my lifetime!      I couldn't get the cramps to let loose for an hour and a half!   I finally laid back down, and they started right back up again!   I was going crazy!   I was in tears.  These things really hurt!     After another hour or so, they calmed down, and I laid back down.  I did fall asleep for about 20 minutes, and then the cramps started up again!    Holy cow, what an awful night!    I slept for a total of almost 3 hours.     I am totally shot today!    The adrenal insufficiency causes extreme fatigue anyway.   I'm good for nothing today.

I think that's all of the news I have for now.   Thank goodness, huh?   You're probably all sleeping from trying to read  this book!   I'm sorry it's so long.

Audrey

Audrey
You and your family have been so much, it must have been so scary for you and your poor Daughter-in-law. Thank goodness she is feeling so much better.
Now you must look after yourself and get yourself better.
Thinking of you and sending love n hugs.
Amanda xxxx

I hope your daughter in law improves and can go home soon Audrey. How traumatic for her and your family. 

I hope that with all that blood they're going to find out exactly how they can fix everything that is misbehaving in your body! You poor thing, what a night you had: I hope you're getting lots of rest to help you get over the shock and fatigue. Your Dr Nephro appointment must be soon now, so hang on in there. 

Sending loads of hugs and love 
Brigitte xxxx

Oh Audrey, what next.....? You seem to be lurching from one horrible event to another, I just don't know how you cope .... are you coping? This must all be so debilitating for you and it's no surprise you are feeling spent.

Now that your daughter in law is no longer quite so much of a concern please take care of you now, rest and recover and listen to your body. Well done for just getting yourself through this latest round of tests and fingers crossed Dr Nephro, your little Nutty Preofessor, will be your saviour. No one deserves to be well again more than you Audrey, you've been through so much.

Jasmine x

Hi Audrey,
Gosh, what an awful day, your poor dil really has been through the wringer.  I'm sending warm positive vibes that they get her feeling well again soon and home.  I am glad that you were able to get the blood tests done and hope they are back in time for your next appt with your nephro guy and that he can give you some answers.  You must be feeling shattered especially after having that much blood drawn.  I hope today is a lot more peaceful.
Hugs from Sue x

Good grief what an incredibly stressful episode for you all. As Jasmine said now that your daughter-in-law is more stable you need to take time to look after yourself.

OMG  and I thought I felt bad! - Hope everything goes OK for you all and thanks for your kind words - will keep you posted on whether the symptoms go away as they haven't as yet but I probably am too early
x

Audrey I am so sorry that your DIL has been so ill. I hope she is improving.

I hope all those blood test helps your doc to get a handle on your issue. I have a good feeling about this doc of yours. Kathi

Thank you all so much for caring. Yes, the past couple of days were very stressful. I could hear my adrenal glands yelling at me as I handed them yet more stress to deal with. I think they're about to go on strike! Actually, I guess that's what they're doing, isn't it?

My granddaughter is doing well. She is coming home today. Again, thank you all for caring.

My body must have been pretty darned exhausted. Last night I fell asleep around 11:30. When I awoke I assumed, like every other night, it would have been around 12:30 or 1:00. I was VERY shocked to see it was 4:30!!! I have only slept for 5 straight hours 1 other time in the past several years. Before parathyroid surgery I woke up every hour on the hour all night long. After surgery I started sleeping for 2 or possibly 3 hours at a time. I still only slept for 5 TOTAL hours. But I've only slept for 5 straight hours twice in several years!

Our granddaughters are coming over to spend the night with us tomorrow, so I guess you won't be hearing from me for a couple of days. No time for the computer when they are here. Please know I'll be thinking about you all.

I hope you all have a wonderful weekend with little pain and very few miserable symptoms!

Audrey