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Post-op 5 months. Not what I expected, but there's hope!

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Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Mon Apr 14, 2014 2:21 pm

First topic message reminder :

Ok, I am finally here to update everyone on my progress 5 months after my surgery.   It has been a very rough 5 months, but I am still hanging in there and praying things will still get better.    A couple of symptoms resolved the day of surgery, others resolved afterward, and some still remain.    I really thought after those 2 tumors were removed, I would be feeling great.   That hasn't happened.

My labs since surgery have revealed a calcium of 10.2 with a PTH of 26.8; calcium of 10.0 with a PTH of 38.0; and a calcium of 10.2 with a PTH of 31.7.    I'm wanting with all my heart to feel I have been cured of this disease, but if Dr. Norman is right in saying adults don't live with calcium in the 10s, something is still wrong here.   My PTH is now half of what it was before surgery, when my calcium was at these same levels, so I hope all is well, but I still wish my calcium wasn't in the 10s!

Before I go any further here, I guess I will finally let you all know the good news I was speaking of yesterday.    The 7-month non-stop twitching of my right upper eyelid has FINALLY stopped!!!!    I also have been having twitching in all other eyelids and all over my face all day long.    At any point of the day, something would be twitching along with the right upper eyelid.    Those facial twitches were also completely gone for 2 days.   Yesterday they started again, but not nearly as frequently.    This is VERY big for me!   I was starting to imagine I had all sorts of diseases due to these twitches.    Now there is hope that SOMETHING is going right in my life!      I still have the intermittent twitches in my upper arms and thighs and nonstop twitches in both lower legs, but since the eyelid and facial twitches have resolved the way they have, at least now I can hope the others will be gone at some point also.       I do have a bit of a concern with this latest improvement though.    I had increased my thyroid medication several days ago.   I am wondering if that might be why the twitches subsided.    The reason I am concerned about this, is because when I increased the thyroid meds, my eyeballs started aching.    This happened once before when I tried to increase the dosage.    So I had to cut back to my regular dosage.    I am hoping it wasn't the extra thyroid medication that caused the twitches to stop, because if that's the case, they might come back now.  : (    

Now I will go through my symptoms and explain where I am with each:

The first symptom to go after surgery was the IBS.  The day after surgery, that was GONE, and that is a biggie for me!    I have suffered with this for about 33 years.

Next to go was the unrelenting running of my nose!    For about a year before surgery, my nose would pour nonstop for several days to a week or more, and I do mean POUR!   I couldn't leave the house when this would happen.    I also had extremely congested sinuses, so bad my teeth would ache.    My ENT doctor suspected the HPT as the cause for all of this.  She told me she had seen some very strange symptoms caused by this disease.    I think she was right on the money, because it was also gone within a couple of days after surgery.

My head had hurt every day to some degree for 3-1/2 straight years.    After surgery it hurt terribly for a couple of months.   It still hurts now, but it's not as painful, and it's not constant.  

I had a lot of trouble for a few years before surgery with an extremely dry left eye upon awakening every morning. It felt as if the eyelid was stuck to the eyeball.  I couldn't open it for about 15 or 20 minutes.     It is no longer like this every morning.   Most mornings I have no trouble at all, and the mornings it is dry, it is not as dry for as long.

My ears had been clogged up for a couple of years, and I'm guessing that is related to all of the added congestion of my head.   My ears are now clear.   I also have had trouble for a few years with my ear canals itching intensely and peeling.   This problem persists.

My neck pain has been 1 of the most painful symptoms.    For 3-1/2 years my neck has been VERY stiff and VERY sore.    At times it will cramp up very hard and stay that way for a couple of months before it will let up.    It will wait a little while and then repeat.    It is very painful to turn my head to either side.   It seems this will be 1 of the last symptoms to resolve.

My shoulders and entire back have been cramping very hard for 3-1/2 years also.     When they do cramp their hardest, it is very painful.  This will last for a few months, and then it will let up some.    I also would get very sharp cramps in my sides every time I would reach for something.    For a couple of weeks now, the severe cramping has stopped.    My back still cramps up when I sit to put on my makeup or when I stand for more than a few minutes, but it's much better than it was!

My upper arms, thighs, and fingers of my left hand have all been very stiff and painful for 3-1/2 years.    My arms and thighs are still very painful, but the fingers will have some good days now.

I had a lot of arthritic-type pain in my thumbs and wrists for a couple of years before parathyroid surgery.    This stopped completely since, except for the arthritis pain in my right thumb, but a few days ago, it all started again.   I think some of the pain in the right thumb is due to aging.     Twelve years ago I did have arthroplasty surgery on my left thumb.   I was hoping that pain was gone for good after that surgery.    I am very disappointed that I am having pain there again.    I guess time will tell if I need more surgery for this problem or it it is being caused from the HPT.

Another VERY painful symptom I've been dealing with is the plantar fasciitis.   I also have severe burning, throbbing pain in the big joints of both little toes.   And I can't forget the pain on the bottoms of my feet.  It feels like I'm walking on golf balls most of the time.    This all started exactly a year ago, and it is still going strong!   Although, I am now able to walk without crutches, so I guess I'm a little better off than I was.   I still have to limp when I walk, but I have noticed a few times I was not limping at all, so hopefully this will continue to improve.   Standing is much harder than walking, even though walking really hurts.  I still can't stand for more than a couple of minutes without needing to find a place to sit down.

My shins and forearms ached a lot before surgery.    The forearms have stopped, and many days the shins don't hurt at all, but they still do hurt a little some days.

The acid reflux is finally improving!     I thought that would never stop!   I was hoping immediately after surgery, when the calcium was supposed to drop, this symptom would resolve.    Since my calcium didn't really drop all that much, I thought it was going to last forever, but it is finally calming down.   I stopped taking all proton pump inhibitors a few months ago when I learned they could cause muscle cramps.   Muscle cramping has been 1 of my worst symptoms, and I didn't want to add to that problem!      I now take Gaviscon on the days that I might get some burning.   Most days I don't take anything.   For several months after surgery, I would have severe burning every time I ate.  It didn't matter what I ate; I would still burn badly.    That doesn't happen anymore.  

My hair had been falling out badly for about a year before surgery.   It continued to fall out for about a month after surgery, and then it stopped.   However, from the looks of the new hair growth after surgery, it looks like the majority of it started to grow back in immediately after surgery.   I know that doesn't make much sense, but my body never makes sense!   Smile 

I had a lot of trouble with ocular migraines before surgery.   The week before surgery, I was having 1 of these things every day.   The day before I left for Tampa, I had 2 of them!    During the 5 months since surgery, I have only had 1.     Quite an improvement!!

My hips and knees used to throb at night when I would try to sleep.   I know, that makes no sense either.    They would ache so badly, I wouldn't be able to sleep.   That is all gone.

For a few years before surgery, I had a lot of trouble with hot flashes.  Yes, you could probably blame some of those on menopause, but I was having a hot flash every 20 or 30 minutes all day and all night long!!     That is 1 heck of a menopause, wouldn't you say?!!     After surgery these greatly diminished.   I now have maybe 1 or 2 most days.  

I'm still not sleeping normally, but I am no longer waking up every darned hour all night long!    Since surgery I have slept for 5 hours straight once and 4 hours straight maybe half a dozen times, but most nights I sleep for 2 or 3 hours at a time.   Still only sleeping about 5 hours total a night, which I am hoping will improve soon, but, hey, 2 or 3 hours at a time is MUCH better than waking up every hour, so I guess I will survive!

My weight is finally starting to come off.  I don't know if this was HPT related or not, but before surgery no matter what I did, the weight just wouldn't budge!    I don't know if this will continue or not, but for a few pounds have recently vanished.

I think this pretty much covers where I am 5 months after surgery.      If I get a chance today I will take a picture of my scar and post that too.   It is barely noticeable now.    The big golf ball-sized lump is completely gone.  That took a few months to go away.   I know they say it is normal to have this bump after surgery and that it will go away in time, but when it's on YOUR neck, I guess it's normal to think it just might not.    It does!  

So even though my journey is not over yet, I am better off than I was before surgery, and if I know if I can keep marching, I will eventually reach my goal of good health again!     And I WILL keep marching!!

Audrey


Last edited by Little Audrey on Mon Apr 14, 2014 8:49 pm; edited 3 times in total

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Sat Jun 07, 2014 2:47 pm

Thanks for the input, Tigerlily. Yes, I am starting to think the pituitary is the problem here. I have been researching this quite a bit lately, and the symptoms fit perfectly! I will list them later on. I don't have time right now. I was blaming some of them on menopause and aging in general, but I think there's a bit more to it than that. I will explain later.

Yes, I too thought about the eye issues and twitches being related to this! I know that can happen. I found a Cushing's forum where MANY people were complaining of severe edema. I should post some pictures of my feet on here right now, but they're so ugly, I don't think I will. My entire body is retaining a LOT of fluid right now. I look like a little blow fish! I have had trouble with this for the past 30 years! My doctors have run all the tests they can think of to find the cause, but no one every has. I think it could be from the thyroid, but now I'm wondering if it could be from elevated cortisol! I just checked the cortisol test I had done 3-1/2 years ago. Normal for an adult is 4.0-20.0. Mine was 19.8. I am wondering if maybe the level now has risen above the normal level. And, as we all know, when it comes to hormone levels, they don't have to be abnormally elevated to cause issues!! I have proven that theory more than once, and I think I'm about to prove it again.

You are not worrying me by suggesting a pituitary issue. I would be THRILLED if I had something fixable to blame all of this darned symptoms on! That would be a much better scenario than ALS, MS, or MG, which were all on my list of possibilities!

I'm thinking we'll need to start with some lab work, but then the MRI will follow. I am so excited about this! I do hope this is the answer!

Thank you also for the pituitary link. I have probably already looked at it, since I've been all over the internet researching this, but I will certainly check it out. Can't learn too much!

Ok, I have to run now. Have a very busy day ahead of me, but I will be back tomorrow to list the symptoms which I think could be from Cushing disease.

Audrey

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sat Jun 07, 2014 7:14 pm

Bless you, Audrey!

You know what the best part of this post of yours is? Well it's:

"OK, I have to run now. Have a very busy day ahead of me ....."

Not very long ago, you wouldn't have been able to even HAVE a very busy day - without serious symptoms and feeling as though you were disappointing your family by not being able to join in!

It's a seriously happy result, that you are off and eager to have a busy day!

have a great weekend and keep us posted on what your PA says.

Love from Tigerlily xx

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Johnny1967 on Sat Jun 07, 2014 7:39 pm

Tigerlily, Have you had your prolactin checked? A prolactinoma is a fairly common pituitary adenoma which will make you feel off and may give you some of the symptoms you describe.

John

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sat Jun 07, 2014 7:47 pm

Hi John, thanks for your input - yes, prolactin has been checked and was lowish normal.

I also had all other pituitary hormones checked and the only one that looked odd was IGF-1 that was lower than the bottom on the range, and a low GH that was 0.33. I asked for these 2 to be done together as I understand that together they are a good indication of GH, rather than a single growth hormone level reading.

Dr Levy was sure I hadn't got any pituitary issues and said not to worry about these low levels - but I do!!
A low growth hormone level can seriously affect your zest for life, and mine is non-existent.
Any further thoughts you might have would be greatly appreciated.

Best of Wishes

Tigerlily

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Johnny1967 on Sat Jun 07, 2014 8:03 pm

Think those growth hormones are a sod to measure and replacing them would scare me I think. The pit sure is complicated. Good luck Tigerlily.

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sat Jun 07, 2014 10:19 pm

Thanks, John - think I need it!

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Amanda Lynne on Sun Jun 08, 2014 7:50 am

Yes good luck Tigerlily.
A xxxx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sun Jun 08, 2014 9:51 am

Thanks , Amanda - busy week next week!

T xxxx

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Amanda Lynne on Sun Jun 08, 2014 1:33 pm

Busy but productive, I wish I was getting somewhere !! Still waiting on Endo, I presume she won't contact me until all the scans etc have been checked, that's fine but I was told this was being done in December.
I have sent an email expressing my surprise to hear this hadn't already been done !!!  Shocked  Rolling Eyes  Mad 
Keep up posted with what's going on as soon as you can.
Lots of love.
Amanda xxxx


Last edited by Amanda Lynne on Sun Jun 08, 2014 1:34 pm; edited 1 time in total (Reason for editing : Typo)
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sun Jun 08, 2014 2:39 pm

Will do, Amanda.

Why not contact the endo's secretary as well to see if you are on her radar for a letter or something.
I had to rattle a few cages to get things done last week - suggest you do the same now.

I know we don't like doing it as it gets us labelled as a "pushy patient", but time's getting on (I didn't want to write "life's to short to wait on an endo" - but there, I've done it!!).

I've a gastroenterology appointment tomorrow (booked ages ago ... to investigate my occasional acute need for the facilities in the bowel department... so gross, sorry - all connected with pHPT, I believe).

I'm minding my friend's Vintage clothes shop on Tuesday, which I always enjoy, and then it's the US on Wednesday.

So, yes, will update on it all asap. (Fausto is next Thursday.)

Love Tigerlily xxxx

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Amanda Lynne on Sun Jun 08, 2014 3:34 pm

Can't wait to hear how it all goes, hope gastro appt confirms PTH causing problems xx, vintage clothes shop sounds great.
I will ring this week, tried last week but secretary not the most helpful and was told, she can't reply until all info back to her !!!
Fair enough as long as she's actually sorting it and not just putting me to bottom of pile.
Amanda xxxx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sun Jun 08, 2014 4:10 pm

Yep, sounds as though you're on her radar, Amanda, always pays to check. When they start getting a bit tetchy, you can almost be sure they are looking out for the stuff they are waiting for to get you sorted just so they can tick you off their list!

Love Tigelily xx

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Sun Jun 08, 2014 4:17 pm

Well, Tigerlily, I did have a VERY busy day yesterday, but every minute of it was HELL!    It was a gorgeous day here with wall-to-wall sunshine.  Not a cloud in the sky, and we don't get many of those days here in Pittsburgh!     The high temperature for the day was around 80 degrees.   Just beautiful!     My daughter and granddaughter came down for a visit.   Everybody was enjoying our pool.  It was so nice to hear the girls' laughter and see them having so much fun.    However, I was in so much pain, and my muscles were so weak, I could not really enjoy it myself.   My heels and feet were so painful, every step I took caused me to clench my teeth, and preparing for this day and hosting this little get-together took a LOT of steps!  I had cleaning to do, food to prepare, our pond to take care of, the pool to take care of, etc.   I am still not sleeping normally, and I still wake up every morning more exhausted than when I went to bed!    So I started the day off with nothing to give.   My knees have now started bothering me too.   The fronts and the backs are very stiff and sore.   It seems to be the tendons in the backs that are causing the problem.    The muscle weakness is so bad, I get nauseous quite a bit.   My neck has been horribly stiff and painful, as I've mentioned before, for 3-1/2 years straight now.   This alone ticks me off so badly, I feel like sticking knives in it so I can't feel the pain of the stiff muscles!   I know that sounds awful, but I am sick to death of this $%&$#% neck pain!    I know the body heals quicker if you keep a good attitude.  I guess I'm doomed then, because I am angry as hell that I am still dealing with all of this $#!+!    I was always a very fit, very healthy individual.   I was so looking forward to surgery so I could start working out hard again and get my muscles back to where they were before this all started.   Here I am close to 7 months post-op and still watching my muscles waste away because I can't use them the way I'd like to.   I keep pushing myself to do things, like the get-together yesterday, to prove to myself that I can, but the fact is that I really can't.    So, as nice as it was to have my daughter and granddaughters around me yesterday, it was not a good day.  

I am excited, though, because I REALLY think I have figured out the last piece of this miserable puzzle!   I really think these remaining symptoms are being caused from elevated cortisol.   I have been blaming them all on HPT, but I do think there is more going on here.   The symptoms that have resolved are bone pain, IBS, hair loss, and my head doesn't hurt at all most days now.   I'm thinking I have been cured of HPT, but my battle is not over.   I just read this morning that elevated cortisol can also cause serum calcium levels to be elevated.   It moves calcium from the bones to the blood.   I'm wondering if that might be why my calcium is still as high as it is, and why every now and then I do still get a little twinge of shin pain.   It's not like it was before parathyroid surgery.  It's not as intense, and it doesn't last as long.  This is VERY infrequent now and very mild.

I am praying my PA will agree to fun all the tests that I am going to request tomorrow at my appointment, and I am praying with all my might that I have finally figured this out.    I diagnosed myself once with a disease, I'm hoping I am about to do it again!   Please keep your fingers crossed for me.

I am spending a lot of time today researching, printing a lot of information, and getting all of my old lab results in order to present my case.   My PA is no ordinary PA.  She has more sense and more intelligence than any doctor I have ever seen, and I have seen MANY!    I am hoping she will agree with all I have to say.   I will post on here when I get home.

I mentioned that I would post all of my remaining symptoms on here and explain why I feel they are all being caused from elevated cortisol.   Well, here we go:

1. Muscle stiffness and pain in my neck, upper arms, and thighs.  This has been going on now for (and I'm sorry for repeating this!) 3-1/2 years nonstop.   I am now getting some weird, new type of muscle pain my my thighs too.   I can't even describe this.    Elevated cortisol can cause stiff, painful muscles.

2.  Tendon and ligament pain in my inner thighs, ankles, and heels.   Have had these symptoms for several years, except for the heel pain, which started a little over a year ago.

3.  Bruising easily.   I hardly ever bruised at all!   People would comment when I would hurt myself because no matter how hard I would bump any area on my body, I never bruised!    I sure do now!    I lost my balance out at our pond last September (and than goodness I fell AWAY from the pond, or it might have been hysterical!), and fell in a way that I landed on a railroad tie on my inner calf.  I still have no idea how I did this, but I did.    I did bruise badly from this, and I really didn't think I hit it all that hard.    The bruise is about 4 inches long and about 1-1/2 inches wide.    When I was in Tampa with my sister for my surgery, I mentioned this to her.  I showed her the bruise.   Now, the accident happened in September.  I had surgery in the middle of November, and the bruise was still there and very tender.   We both thought that was fairly odd that I still had the bruise.  Well, it is very close now to being 7 months since surgery, and I STILL have that bruise, and it still hurts!      I have noticed I am bruising much more easily now and much more often.   Elevated cortisol also causes this.

4.  I have been having trouble with recurring UTIs now for about 12 or 13 years.   My doctors can't figure out why this keeps happening.   I won't go into detail, but, believe me, we have been over all of the possible causes, and this these infections should NOT be happening!!   At my last urology appointment, my doctor prescribed a daily antibiotic and the use of estrogen cream.   I refused to use either because of the things I heard about both, so I decided to try D-mannose, which is supposed to work amazingly well.    I had another infection shortly after I started taking it.  I am still taking it and praying it will work this time, but not getting my hopes up, because it seems like nothing is every going to stop these!!     Elevated cortisol suppresses the immune system, causing recurrent infections.   Hmmm........... could this possibly be my problem?

5.  I have noticed for the past many years that I am gaining a lot of weight around my mid-section.  Now, I know this can be due to menopause and natural aging, but I've also noticed over the past year that I am accumulating fat on my upper back.  This is very noticeable.   It is especially noticeable on the right side of my back.  I was actually thinking if it gets an worse, I would even consider plastic surgery to get rid of it!    I have not gained any weight over the past several years, so this doesn't make any sense.    Also symptoms of elevated cortisol.

6.  I am still having issues with my brain function!    I can't remember simple words or things, and for many years I simply can't remember big events and vacations that we've taken.   I have a lot of trouble concentrating and making decisions totally throws me for a loop!   I almost panic when I have to make a decision.  This is very frightening.  I had been blaming this all on HPT.   Again, maybe there is more to it than just that.

7.  I am still not sleeping normally, and I still wake up in the morning more exhausted than when I go to sleep.   I am so tired during the day, it makes me nauseous, and I feel like I just can't go on another minute!    I was blaming this totally on the HPT.  Again, maybe there is more to this symptom.  

8 & 9.   There are 2 symptoms that REALLY have me believing I have a cortisol issue.   I have been having a LOT of trouble with peripheral edema over the past 20 years or so.  None of my doctors have been able to figure out what is causing this.  They have tested me for everything they can think of, but everything is always normal.   My feet stay puffed and look like blowfish for many months at a time, and then it will let up some.   It never totally goes away in my lower legs, but sometimes the feet will look normal.    About a month ago, this problem got really bad again.   Only now, I am also noticing edema in my arms, not just my feet and legs.   My face has been puffy for a few years now.  I have big bags under my eyes.    I am not sure if this is from the hypothyroidism or lack of sleep.    Elevated cortisol causes inability to sleep.   It also causes a puffy, round face and neck.   I was diagnosed with sleep apnea a few years ago.    I never used to notice my throat closing up inside while i was awake, but I was tested, and they said it was doing so while I was sleeping.  Well, a few months ago, I noticed it closing up when I'm lying on my back OR on my stomach.   It feels like there's just too much fullness around my neck pushing on my throat.    It's hard to explain.    I have not gained any weight over the past several years, so I just figured my body was changing shape with age, and this was causing this problem.    When I read that elevated cortisol can cause fullness in the neck, it all started to make a bit more sense.

And now for the main symptom that has really got me researching and looking for more answers, because I simply cannot live with this!    Severe muscle weakness.    This started about a month and a half ago or so.    My arm muscles are so weak, it is a real effort to even type on my computer.   So this long message has been a real challenge!    When I stand, my legs feel like they want to simply collapse.   Walking up and down stairs is horrible; my legs tremble.    This feeling of extreme weakness also makes me nauseous.  I have never felt anything like this before in my life!    Hypothyroidism and elevated cortisol both can cause muscle weakness.    At first I was blaming this on something more serious, like MS or MG, but now that I know all the symptoms of elevated cortisol, I'm thinking this could very well be the cause.
So, I am not positive that I have found the answer, but I think there is a great possibility!     I thought after years of researching HPT, that I would be finished looking for answers after surgery.   It looks like I was wrong, but I love a good challenge!    Smile

Tigerlily, I would like to tell you that I had TERRIBLE IBS for 30 years before my parathyroid surgery.  The day of surgery, that symptom totally disappeared!!   It was like magic!!    It doesn't surprise me that you are having so much trouble in that department.   Hopefully, some day you will have parathyroid surgery, and you can experience that magic moment too!    I do believe your time is just around the corner now!

Amanda, you hang in there!   All of your efforts will pay off.  Your time is coming too! One of these days those darned medical professionals will get their acts together and get your case solved!

Well, after typing this book here, my arms are about to fall off!   It's back to the research for me!   Hopefully, it will mainly be reading and not typing!  

Audrey


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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sun Jun 08, 2014 5:20 pm

Great post, Audrey - and you've done some terrific research there. The oedema and the increased weight in your back area are two symptoms jumping out at me that I've read about recently in connection with elevated cortisol.

Off now to look it up - and back soonest.

You're getting there, too, Audrey!

Love from Tigerlily xx

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sun Jun 08, 2014 6:02 pm

Found it, Audrey - could it be Cushing's Syndrome due to increased circulating ACTH from the pituitary?
60% of cases can be due to this, but there are other causes of Cushing's - including "following the therapeutic administration of synthetic steroids"; my Clinical Medicine book also states that "all spontaneous forms of the syndrome are rare."

Have you been having to take steroid drugs for any length of time - i.e. years?

Some of the main signs and symptoms are: Thin skin, bruising, hypertension, purple striae across the abdomen, depression, acne/unwanted hair growth, rib fractures, osteoporosis, pathological fractures, poor wound healing, proximal muscle wasting, proximal myopathy, kyphosis, central weight gain, skin infections, glycosuria, insomnia (those with Cushing's Syndrome have high evening cortisol levels - you are on the right track, Audrey, as that would keep you awake), back pain, polyuria/polydipsia, oedema - and THE ONE THING YOU MENTIONED ABOVE THAT RANG A BELL WITH ME:'  "BUFFALO HUMP".

So sorry, Audrey, it's a terrible thing to say, but I think it refers to putting on weight in the upper back area.

Do you have any brown skin pigmentation or café au lait patches, as they are sometimes called. These are quite typical of ACTH-dependent causes of Cushing's Syndrome (I found this interesting for my own case as I have a large number of these, but my ACTH was low normal).

A 24-hr urinary free cortisol test should rule it in or out: "Repeatedly normal values (corrected for body mass) render the diagnosis of Cushing's Syndrome most unlikely."

I think you have hit the nail of the head, Audrey!! Or, nailed it, as you probably say in the US!!

Perhaps other forum members with experience of Cushing's Syndrome or high cortisol will be able to jump in here?

Keep us posted on progress with your PA this week and I do hope it goes well!

Love from Tigerlily

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Sun Jun 08, 2014 7:38 pm

Thanks for the input, Tigerlily.   Yes, I am well-versed with all of this now, which makes me think I have, as you said, hit the nail on the head.  I'm hoping I hit it right smack dab in the center of the head, and shattered the $%&$#% thing from the force of the hammer!!!

Yes, I seemed to have forgotten to mention the hyperpigmentation symptom.   I do have some brown spots on my face, which worsen in the summer when I'm in the sun.   I always assumed that was from aging.    Maybe not.     I also notice something else about 10 years ago.    I LOVE the sun, and I LOVE to sunbathe.   I sunbathe to the extent of scaring my family to death, worrying about skin cancer, but I just can't stop.   One of the reasons I love it so much is because it feels so good on my muscles and bones.   It just simply feels good.    Well, I started to notice about 10 years ago that I tanned MUCH faster than I normally did.   As the years went by, I seemed to tan faster and darker.   I have commented on this many times to my family and friends.   I can be out in the sun for a day and look like I just got back from a week at the beach.    Although, I didn't mind the extra color, it crossed my mind that something might be wrong.   I didn't know if it was normal for this to happen with age, or if there was something else going on with my body.    This continues to happen.   My massage therapist couldn't believe how dark my legs were on Thursday.   I have only sunned them twice.   I don't think this is right.    When we speak of hyperpigmentation, I don't know if this is included, but it is very strange.   For a while I thought it might be related to my elevated LFTs, but those levels have been normal now for quite a while!

Also, I forgot to mention the eye issues I've been having now for a few years.  I did mention it in several posts, but not related to Cushing's.    My eyes have been pulling and trying to cross now for a few years.   I figured it was because all of my muscles are having so much trouble cramping and such.   I just though the eye muscles were being affected also.   Also, as you know, I have been having a lot of trouble with the blurry, floating things in my left eye.    Now, the optometrist did say I had small cataracts in each eye, but would small  cataracts (which were so small, he didn't even see the first time he examined me!) be causing so much trouble?   I even asked my optometrist if a pituitary tumor might be the cause of my eye issues.   He said it could be, but he wasn't sure.  It made perfect sense to me that it could!     Well, after doing all of this research now on Cushing's, I see that I was right.   It can indeed cause blurred vision!!

Like I said, this could all be coincidental, but I sure hope it's not!  

Thanks again, Tigerlily.    Who knew I'd still be fighting battles this long after meeting you all?   Who knew we'd ALL still be fighting battles this long afterward?!!!    Onward we go!!  

Audrey


Last edited by Little Audrey on Mon Jun 09, 2014 11:23 am; edited 1 time in total

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Amanda Lynne on Sun Jun 08, 2014 8:29 pm

Hi Audrey & Tigerlily
You two are mines of information, I can't believe you may have got to the bottom of your problems Audrey and I'm so sorry that you have been suffering so much when you should have been enjoying the time with your family.
I'll keep it short as I'm feeding 8 ATM the weather is lovely and I'm cooking paella.
Good luck with you appointments ladies I've got everything X'd for you both. 
Amanda xxxx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sun Jun 08, 2014 8:33 pm

Another thought about your easy tanning, Audrey - have a look at this:

http://www.patient.co.uk/health/haemochromatosis

Love Tigerlily xx



PS Amanda - paella - oooh, smells soooo good! XXX

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Sun Jun 08, 2014 10:25 pm

Thanks for the good wishes, Amanda. I do hope things go well for us all in the very near future! We all deserve to feel well and be happy again!!

Yes, Tigerlily, I also have checked out hemochromatosis. Wow, there could be a whole slew of things wrong with me!!  affraid 

I wanted to mention here something else I just learned while researching today. I learned that the most common type of pituitary tumor is a prolactinoma. This tumor produces the hormone prolactin. This is the hormone responsible for lactation in women. Do any of you remember me complaining of terrible breast tenderness over the past several years? It's so bad that I am unable to get mammogams. It is very painful when anything at all touches or bumps either breast. Well, it dawned on me that if a prolactinoma tumor can affect the breasts by causing them to produce milk, they just might cause the breasts to be tender and painful. I was right!!! They can! I am trying not to get my hopes up here, but the thought of all this muscle pain and stiffness going away sure makes it tempting to get those hopes right up into the sky!!

Audrey

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Sun Jun 08, 2014 10:30 pm

Well done, Audrey - that can easily be tested in the blood - you and your PA are going to be busy this week.
But it's great that you feel that you are near to getting some definitive answers.

Best of Luck and Love from Tigerlily xx

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Mon Jun 09, 2014 2:33 am

Tigerlily, I forgot to wish you good luck tomorrow. Hope all goes well!

Audrey

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Mon Jun 09, 2014 8:35 am

Thanks, Audrey - Bless you!

Tigerlily xx

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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Jasmine2 on Mon Jun 09, 2014 9:59 am

Phew, it's all going on - sisters are doing it for themselves .....!

Good luck ladies!  So looking forward to hearing about your outcomes!

Jasmine x
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Brigitte0 on Mon Jun 09, 2014 2:53 pm

I dnn't know, I have a day out of the forum and it's all happening! Audrey, I'm so sorry you're going through all this, but I hope that your own research and that of Tigerlily can help you in some major way. The very best of luck with it all.

Also, Tigerlily, I hope you have a productive week too. I think you have definitely qualified as another forum doctor, along with our resident Dr Audrey!

Wishing you both all the luck in the world.

Love
Brigitte xx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Tigerlily on Mon Jun 09, 2014 6:36 pm

Thanks, Brigitte!

Love Tigerlily xx

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Re: Post-op 5 months. Not what I expected, but there's hope!

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