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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 Apr 26, 2014 1:17 pm

Just wanted to add to this thread that the severe muscle cramps I've been dealing with all over my body have now subsided GREATLY!    My neck still cramps up pretty regularly, but all other cramps have greatly decreased!   Yippee!!    

My neck, upper arms, thighs, and fingers of my left hand are still very stiff and sore, but the constant cramping is much better.    The fingers have some very good days, when they don't hurt much at all.      

I'm still having trouble with my heels, little toe joints, and the bottoms of my feet, but I do have some better days with all of that too.    I caught myself again the other day walking without limping!   This is BIG!    I still can't stand for more than a minute or two without having lots of foot pain, but I can walk with much less pain at times, and that sure beats walking with crutches! 

I think my biggest worry now is all of the muscle twitches and the feeling of weakness in my arms and legs.   This is very frightening.    As I mentioned previously on the forum, my right upper eyelid which twitched nonstop for 7 straight months has finally stopped.    I am very grateful for that.   That was so very annoying!    I still get occasional twitches throughout the day in all eyelids, my chin, above my lip, my upper arms,thighs, and my sides, and I am still having nonstop twitches in both lower legs, but the ones in my face have decreased some.   It feels like little thumping explosions all over the sides and back of both lower legs.   It doesn't hurt.  It's just very annoying and scary.  

I am starting to wonder now if the D-mannose I've been taking for recurrent UTIs might be causing the feeling of weakness in my limbs.    This weakness seemed to start shortly after I started taking it a month ago.     I don't know if I want the D-mannose to be the cause of the weakness or not.   It seems to be working for the UTI problem, so I would hate to stop taking it!   And if it is not causing the weakness, I'm not sure I want to know what IS!    I checked the side effects of D-mannose, and there is nothing listed regarding muscle issues.    Hopefully, it is just something my muscles are now doing in the process of recovering from HPT.    Still scary.

Audrey

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

Post by Little Audrey on Wed Apr 30, 2014 7:46 pm

Almost afraid to post this for fear of jinxing myself, but I went out shopping today and didn't need ANYTHING for pain!!!!!!! First time in a year!! I did quite a bit of walking, and I was hardly limping at all! Actually, part of the time I was not limping! It felt so good to be able to get up from the table at lunch and not feel the need to clench my teeth due to heel/foot pain! I still can't just stand still for more than a couple of minutes without my feet hurting badly, but it is easier now to walk. I know from the past that symptoms are very capable of getting bad again after improving some, but this is really BIG!! My neck is still KILLING me, and my upper arms are still very stiff and sore, but I'll take anything I can get!

My arms and legs are not feeling as weak today as they have for a couple of weeks now either. This is also very good!

Also, wanted to mention that even though my lower legs are still twitching nonstop, I have been reading about other people with hypothyroidism who suffered from a lot of twitching, especially in the lower legs, so I am very optimistic about this. I increased my thyroid meds again. I will see if this helps. I also keep hearing and reading about how badly elevated calcium can affect the muscles and nerves, so I am not ruling out the possibility that I could still be suffering from calcium that is still too high, but I'm praying it's all being caused from the thyroid. The fix for that is much simpler.  Smile 

I'm closing in on the 6-month post-op mark now. Just two more weeks. It looks like if these symptoms are being caused from the HPT, it is going to take me longer than 6 months to fully recover, but I'll figure it all out, and I'm getting there!

Audrey

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

Post by Amanda Lynne on Wed Apr 30, 2014 7:48 pm

So so glad for you, keep up the good work.
Lots of love Amanda xxxx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Wed Apr 30, 2014 7:58 pm

Thanks, Amanda. It has been a very long battle, so I am thrilled. I do feel so badly posting good news, though, while the rest of you are struggling so badly. I am still hurting pretty badly, but at least I am not still struggling for a diagnosis. It is much worse to be struggling badly and feel like there is no hope, than to be struggling badly and know there is. I'm praying for you all!!

Audrey

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

Post by Meggy on Thu May 01, 2014 8:08 pm

But reading how much things are improving for you gives us all hope:-)

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

Post by Little Audrey on Thu May 01, 2014 11:05 pm

I sure hope it does, Meggy, because hope is so very important when dealing with this dreadful disease!

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

Post by Tigerlily on Fri May 02, 2014 5:49 am

That's just great news, Audrey - keep on truckin' - and stick your neck out whenever you need to because your scar is invisible to me!!
Love from Tigerlily xx

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

Post by Linny on Fri May 02, 2014 9:46 am

Hi Audrey
I'm catching up on news and so glad to read your posts. Slowly but surely we are improving. I thought I would add that I still have upper arm weakness and occasional weak legs too. I'm a bit behind you with recovery but maybe these are things which take longer to let go. I didn't have muscle cramps before surgery but have been having them since and they are starting to ease up now too. I was trying to get my head around how we heal but there isn't much info about with such detail in it. It would be great to be given more of an idea what to expect wouldn't it. 
I saw endocrinologist on Tuesday and he wants to run test on my adrenal glands as I am getting crashing anxiety. I think it is hormonal/ stress but he wants to 'rule out' adrenal probs. deep sigh!!!
I must say though that things are better generally. Maybe middle aged, very stressed from all this PTH rubbish woman syndrome.
Keep on improving. It's lovely to read. You may soon be shopping til you drop!! 
Love lynn xx

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

Post by Amanda Lynne on Fri May 02, 2014 9:56 am

Hi Lynn
I hear the syndrome calling me too.
I'm glad you are seeing some signs of improvement, it would be helpful if someone out there could put all the results together so that people recovering from this horrible disease would have some sort of guideline.
Pain about possible adrenal problems but at least he's taking you seriously and trying to find out reasons for anxiety.
Amanda xxxx
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Guest on Mon May 05, 2014 12:49 pm

Hello Little Audrey
Have just been reading about all your symptoms and was especially interested about the clogged up ears and sinuses.
I've had a problem with clogged up ears for many years and still do. I have a Eustachian tube problem of congestion and pain. My ENT surgeon put a grommet in for me after an ear infection but he realised that there was something else wrong and referred me to the doctor who finally diagnosed my parathyroid problem.
Like you I also have pain all over in muscles ligaments etc.!
I hope you feel better soon and can spend your time not having to think about your health!
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Mon May 05, 2014 11:23 pm

Thanks, Maggie. Yes, it would be nice if we could all stop thinking about anything that has to do with this stupid disease, wouldn't it? That time will come for us all some day!

Yes, the sinus issues and clogged ears were thought by my ENT doctor to possibly be symptoms of HPT, and I think maybe she was right. I also have very narrow Eustachian tubes, so any extra congestion at all tends to affect my ears. I am very sorry you also have a problem with your ears. I don't normally have any pain with mine. I am very sorry you do. Inner ear pain is awful!

It seems that many of us with HPT do suffer from muscle, tendon, and ligament pain. It is nice to know I'm not alone in still dealing with this pain this far along after surgery! That gives me hope that I will eventually heal and be rid of this pain.

I do hope you also continue to progress with your recovery and improve to the point where you feel well again! We will get there!

Audrey

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

Post by Little Audrey on Mon May 05, 2014 11:50 pm

Made an appointment today to see my PA on Thursday. I will be discussing many things. First will be the nonstop muscle twitches. Then I will get her opinion on my very weakened arms and legs. Then will be my ongoing muscle stiffness and pain and my tendon pain. I also need to ask about the blurred vision problem of my left eye for the past few weeks. And I can't forget to ask why I'm having such bad arthritis-like pain now in both wrists and thumbs. This worries me, because like I mentioned in another post, I had surgery on the left thumb/wrist to correct severe arthritis pain 12 years ago. I can understand why I might have some arthritis pain in the right thumb, but the left one should not be hurting!! The left wrist is also hurting on the side by my little finger, where I broke it several years ago. That usually doesn't hurt either. I don't think this is normal arthritis. I think something is still very wrong with my entire system, causing all of these stupid symptoms!

I will be asking her for a script for more bloodwork, so I can get my calcium and PTH tested once again. it will be the 4th time I've had them tested since surgery 6 months ago. Well, almost 6 months ago. It will be 6 months on the 14th. I'm praying the levels have not worsened since they were tested last! I will ask also to check my thyroid function, my B12 level, my magnesium level, and my potassium level. We have tested all of these things so many times before, but since I'm still having trouble, I don't think it will hurt to check them all again! Did I miss anything?  Smile 

After I receive these latest lab results, I will be emailing Dr. Lopez in Tampa to get his opinion on my lingering symptoms and my lab results.

This is not where I planned to be 6 months post-op. I planned to be rid of my pain and feeling well again. Someday.

Audrey

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

Post by Guest on Tue May 06, 2014 9:01 am

Hello Audrey
Anybody who has arthritis should be checked for Haemochromatosis (iron overload) and have this excluded. As well as causing damage to major organs like liver etc. Haemochromatosis can cause arthritis particularly in your first 2 fingers, in your hand and in joints. The condition is due to a faulty gene.
 http://www.haemochromatosis.org.uk/index.html
This is a good website for information. Its the British site but there are good web sites in other countries.  
You need to ask your doctor to check your ferritin level and transferrin saturation. If that is raised then you would go on to have a genetic test. However most women don't have an iron overload until they stop having periods.  
Following my diagnosis I had about 450mls of blood taken off every 2 weeks to make me iron depleted. I am in the maintenance phase and I have 450mls of blood taken off every 12 weeks to keep my iron levels low.
Sounds to me like you may have other things going on as well as a parathyroid problem and you need a reassessment by a experienced intelligent doctor with an open mind who can think 'out of the box' !!
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Admin on Tue May 06, 2014 10:17 am

Regarding clogged ears. I have have a drainage problem on my left side and used to get infections and headaches.
I now use earplugs when I shower to minimise water getting in my ears and this has made a big difference.

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

Post by Tigerlily on Tue May 06, 2014 12:29 pm

Re: LYME DISEASE
 by Tigerlily Today at 11:55 am

I'm just copying this post to this thread, Audrey, as our symptoms or arthritis-like joint pains and twitchings are so similar:


Good luck with your appointment this week.

I'm looking at pituitary disease and Lyme at the moment - really to rule them out of the picture, but they seem to be ruling themselves in!

Lingering joint and neuro issues are a symptom of chronic Lyme disease. I was bitten in 2006 and may have had it since then! The main symptoms I've had recently that seem to fit are the rib-cage pain which is specifically listed for Lyme, jaw pain, and an isolated 3rd nerve palsy that causes double vision (but is corrected by glasses). I have other cranial nerve issues like TMJ, trigeminal neuralgia, and various facial tics and twitches - a bit like yourself.

Having said all this, my latest calcium is 2.45 (9.8, with a PTH of 12.7 (120), so pHPT is still in the picture! But I go to see Jasmine's Dr Miles Levy on 22 May, so hope he will be able to make some sense of all of this.

My doctor's office has just called back to say I can be tested for Lyme disease so I'm off to give blood again. In chronic cases, it can be that the arthriitis-like and neurological symptoms show up many years later. So do you remember being bitten and getting a bite that took a long time to heal, and may/may not have looked like a bull's eye on the skin?

I'm also being tested for pituitary disease: Prolactin, ACTH, GH and IGF-1 and those results should be back soon. Does anyone else have any info on these that might be relevant?

Keep us updated, Audrey - 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 Wed May 07, 2014 2:22 am

Thanks for the words of encouragement, Tigerlily!! Much appreciated! Yes, this has been 1 heck of a slow recovery, but I guess I'll eventually make it to the finish line! It sounds like you have been researching your little butt off trying to get to the bottom of all your symptoms! I do hope something pans out for you. I too have been considering pituitary disease, and Lyn just suggested that to me today, so I think it's time to get that checked out too. I will be discussing that with my PA on Thursday too. Please keep us posted on all the tests. Oh my gosh, I just typed "Please keep us posted on all the testes!"  Laughing  I had to change that!

Lynn, it does sound like we have had and still do have some very similar symptoms. I know my muscles and tendons have been affected the worst by this stupid disease. I never dreamed I'd have nonstop, awful neck pain for 3-1/2 years. This truly has been hell! I'm glad you're seeing some improvements too!! We're moving in the right direction! Onward we march!

Edwin, thanks for the tip on the ear problem. My ears clog up from the inside because of the very tiny Eustachian tubes. I don't think keeping water out from the outside would help with this problem. Although, if water gets in from the outside, that would definitely cause a big problem!!

Audrey


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

Post by Tigerlily on Wed May 07, 2014 10:18 am

Hi Maggie
Thanks for the info on haemochromatosis. I don't think I have arthritis in my first and second finger joints, but I do have those darned lumps on the top of my feet that are in the area of the 2nd metatarsal joints, with matching lumps appearing on the top of my hands in the metacarpal area between the index and 2nd finger joints.
I also have numerous café au lait patches all over my body, but not enormous, about 1-1.5cm max, that I've never received an adequate explanation for. Now plus vitiligo patches of absent colour.
I don't exactly have a 'permanent tan' but I sit out in the sun for 5-10 minutes when we have sun to top up my Vit D naturally, and it has taken me no time at all to become quite brown this year doing that.
I hope none of this fits (I do have a slightly fatty liver seen on recent CT) - but I'd be pleased to hear what you think. I had thought it might be an excess of copper from new water pipes/connections.

Tigerlily xx

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

Post by Little Audrey on Wed May 07, 2014 10:52 am

And it looks like I forgot to comment on Maggie's post regarding the haemochromatosis. Sorry, Maggie.

Yes, thank you for this info. I too was diagnosed with a fatty liver several years ago, but my liver enzymes have been normal now for the past year and a half or so. I know Dr. Norman lists elevated liver enzymes as a symptom of HPT, but my enzymes normalized a little while before surgery, so I'm not sure if that's what was causing my liver issue or not. I also tan very easily and retain some of that tan all year long, even through the 6 months I am not in the sun at all. I have commented to people for many years that it seems the older I get the faster I tan. Hmmmm......... I always thought my fast, very dark tanning had something to do with the fact that I am 50% Italian and part Cherokee Indian. Maybe there is more to it than that. I do know that for most of my life I would turn very pale during those 6 sunless months, but for quite a few years now I just stay tanned. I will definitely have this checked out. I know my ferritin level has always been normal up until now, but I know things can change. I'm very sorry you have to deal with this problem beside dealing with the HPT! Thank you again for sharing this with us.  Smile 

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

Post by Little Audrey on Fri May 09, 2014 11:24 pm

Well, my appointment yesterday with my PA went well.  We discussed a long list of issues.     The appointment started off with a blood pressure of 162/98.   Sounds terrible, but it's about normal for an appointment at this particular place.  I really do wonder sometimes if something is wrong with their machine.   My pressure at my urologist's office recently was 140/82 or something very similar.   Here at home it is always around around 100/60.   If you recall, recently my PA put me on blood pressure meds, and my diastolic pressure dropped to 45, so i stopped the BP meds altogether.    She is STILL concerned about my pressure since it is so high at her office.   She is wondering how often during my daily life, it goes as high as it does at her office.   She still wants me to have the 24-hour BP monitoring test performed.   Although, if my diastolic pressure is going to drop to 45 when on medication, I don't see how I would benefit from medication!

She is very concerned about all of the muscle twitching I've been dealing with.   The twitches in the lower part of both legs are still going nonstop.    The twitches in my face have greatly diminished.   Today the only twitches I felt was the ones in my chin, and that was very brief.    I am still twitching in my upper arms and thighs intermittently daily.   I also have twitches regularly in my sides and stomach.  These are pretty infrequent.    She wants me to see a neurologist.  I will be calling on Monday to make this appointment.

She wants me to start taking something stronger for the acid reflux again, because of the returning hoarseness and constant mucus in my esophagus.   This is what happened several years ago, when my gastroenterologist prescribed a proton pump inhibitor.    I don not have nearly as much burning in my esophagus as I had for a while before and for several months after my surgery, but I guess there is still a problem.    My new gastroenterologist told me at my last appointment that my acid reflux was mild, so I didn't need to take anything regularly for it.   I'm thinking maybe he was wrong due to my symptoms.

She wants me to make an appointment with my optometrist for the issues I've been having with my eyes.   For a few years before I was diagnosed with HPT, my eyes were very dry upon awakening every morning.   The left eye was the worst.   It felt like the lid was stuck to the eyeball, and it was so uncomfortable, I couldn't open the eye for about 20 minutes.   Then it would be fine for the rest of the day.  After surgery, this problem was nonexistent for several months, and then the left eye started again.   A few weeks ago, a new symptom surfaced.    I started having sort of floating clouds moving across my left eye.    It lasted for a couple of hours and then it stopped.    A few days later it happened again.   It now happens very often all day long.    I've also had trouble with my eyes not being able to focus when I try to read.   They keep crossing, causing double vision.   Yes, I think I need to get my eyes checked.    I will be making that appointment on Monday too.

My PA also was concerned with this overwhelming muscle weakness I've been experiencing now for a few weeks.   It has gotten so bad, it makes me nauseous.   My arms and legs are VERY weak!   Going up and down steps is very scary.    My arms are so weak, working on my laptop typing is very uncomfortable.   My arms just don't want to work.   Many times, my arms and legs will feel like they're sort of shorting out when I'm using them, and they will jerk quickly.   Something is very wrong.    I am hoping the neurologist will be able to figure out what is going on with me.    I am not going to tell you I am not scared.   I am.     I know hypothyroidism and hyperparathyroidism can both cause problems with muscles and nerves.    I sure hope that's all this is!    Although, if this is being caused from hyperparathyroidism, I guess I have not been cured from my surgery 6 months ago.   Like I said before, if more surgery is what I need to feel well again, bring it on!!!   I'm ready.   I've had enough of this $#!+!

I've also been having a lot of trouble with edema in my lower legs, ankles and feet.   Over the years it seemed like we could take care of this by increasing my thyroid meds.    We did try diuretics, which did help quite a bit, but when I started being tested for hyperparathyroidism and learned that diuretics can alter the calcium and PTH levels, I had to get off of them completely to determine if I really did have a parathyroid problem.   That was when we discovered if the thyroid meds were increased, the edema disappeared.   However, when I recently tried to increase my thyroid meds, my eyeballs started aching, so I cut back again.   Edwin mentioned that sometimes when thyroid meds are increased, a person will experience symptoms of hyPERthyroidism for a while.   So I tried increasing again a few weeks ago.   My eyeballs were aching, but I persisted.    Well, my PA told me yesterday that I needed to cut back again, so I did.   With all the trouble I'm having with my eyes, I really hate to add more aching to the equation anyway.   At least, not right now.

She was happy my head stopped hurting, my shins stopped hurting, my hair stopped falling out, and my intestines are feeling so wonderful, but we both agreed I have a long way to go before I'll be well again, WHATEVER is causing it all!

She gave me an order for more bloodwork.   I had asked her if we could check my calcium and PTH one more time before I send a letter to Dr. Lopez.   I want to see if my calcium will continue to be in the 10s for the fourth time since surgery.   I think Dr. Lopez needs to know this is happening.   If I felt great, I wouldn't care, but since I am still so sick, I am a bit concerned.     My PA did order the calcium and PTH to be tested again.   The other tests she ordered are ANA screen, rheumatoid factor, sed rate, Sjogren antibodies, C-Reactive protein, Total CPK, magnesium, Celiac disease antibody panel, smooth muscle antibodies, a basic metabolic panel, and vitamin D.    I have a feeling I won't have any blood left when I have this blood drawn!   affraid 

So there you have it.   One more appointment under my belt and a whole slew of new ones on the horizon.   Onward I go!

Audrey


Last edited by Little Audrey on Sat May 10, 2014 11:04 am; edited 2 times in total

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

Post by Guest on Sat May 10, 2014 9:35 am

Well done Audrey and keep pushing forwards!
Sounds like your doctor is reassessing and is now testing for inflammatory markers etc.
When all those results are back and if nothing is found she needs to reassess again and test more stuff until the cause is found.
So often I have had a doctor do nothing even when I tell them I feel really ill and awful.
My calcium was usually at the higher end of normal when tested over the years but nobody carried out a parathyroid hormone level which was the key for my diagnosis. It was the fact that the parathyroid hormone level was too high for the calcium level that indicated parathyroid disease. Just doing a calcium was not enough. Any test results within normal range or slightly high were ignored, nobody looked at them intelligently. I suspect sometimes they thought the lab had got it wrong and thus ignored a result.
I always think of my friend who has health issues too her doctor said to her "we've done enough testing we wont do any more" years later another doctor looked with fresh eyes, did some more blood tests and found a serious liver condition!
I once went to see an NHS endocrine consultant, her first words to me were, "we don't expect to find anything wrong with you"! So of course she didn't look properly, I think she was of the mind I had some sort of fictitious illness problem, so she failed to find the parathyroid adenoma! She of all the doctors I saw should have found it!
When you are ill you are vulnerable and you find it difficult to fight your corner but you have to. Nobody cares about your health as much as you. Nobody is going to fight for your health as much as you.
Keep going Audrey and eventually you will get the answers you are looking for.
Maggie2 xx

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

Post by Lucycatnaps on Sat May 10, 2014 7:51 pm

Hi Audrey,
I am glad to hear that your appointment went well, it sounds like your PA has a plan of action and is being pro-active in  trying to find answers to the cause of your symptoms.  I know how hard it must be to keep persevering but we definitely know our own bodies and know when something isn't right.  I think having confidence in your doctor to leave no stone unturned is a big plus too.  It does seem sensible to have your eyes checked out,  I sincerely hope that you will find some answers and can soon feel better! 
Sue
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Re: Post-op 5 months. Not what I expected, but there's hope!

Post by Little Audrey on Sun May 11, 2014 12:08 am

Thanks, Maggie. Yes, we all have to keep fighting for ourselves. We know something is wrong, and even if the doctors can't figure it out, we have to keep pushing. I had to laugh when my gastroenterologist told me people should stay off the internet when trying to find answers to medical issues. I told him if I had stayed off the internet, I would still have 2 parathyroid tumors in my neck, and I was not joking about that!! I don't know why doctors think those who did not attend medical school are incapable of learning! We might not have medical degrees, but we do have brains!

Thank you too, Sue. My PA is a beautiful person, who would do anything to help me be well again. She is very intelligent and very compassionate. There aren't many like her. She might not understand what is going on with my body, but she will do everything in her power to make it right again. I do love her!

I will be calling on Monday to make a few new appointments. So very tired of appointments, but, like everyone else, we have to march on!

Audrey

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

Post by Kathi209 on Sun May 11, 2014 3:45 am

Hi Audrey,
You better drink some oj after all that lab work. So glad your PA is on the ball and checking things out for you. I hope you get some answers. If calcium is still high I would e mail Dr L. I just did a bunch of lab work myself the only results I got back was on 24 hour urine which is only 179. Best of luck to you........
Kathi

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

Post by Little Audrey on Mon May 12, 2014 1:55 am

Thanks Kathi. Yes, I think I'd better drink a ton of fluids that day. Smile

Yep, my PA is really worried about me. After spending at least half an hour with me at my appointment (and I'm thinking it was probably closer to 45 minutes), she told me she would be calling me soon to see how I'm feeling. Now how many doctors offer to call to check on a patient? Well, except for Dr. Norman and his team after surgery. I'm sure there are some who will do this, but there aren't many. I just love this woman! She is more like my sister than my doctor.

Sorry to hear about the low urine calcium, but if you recall, I had two 24-hour urine tests done before I was diagnosed, and they were both normal. I am not surprised my doctors had trouble diagnosing me. I never had an elevated ionized calcium. I never had kidney stones. I never had elevated urine calcium. And I never had osteoporosis. All I had were a ton of symptoms, and high or high/normal serum calcium along with high or high/normal PTH. If doctors were better educated, they would have been able to diagnose this, and I would not have had to wait 3 years to get that diagnosis! We can never give up! One day everybody on this forum will be cured and well again! Good luck to you too!

Audrey

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

Post by Little Audrey on Tue May 13, 2014 1:31 am

Well, I had my bloodwork taken care of today.   They needed 8 tubes of blood.   I didn't really have a negative effects from the draw.    Now the long wait for the results.  

And I have come to the conclusion that I just might need some vitamin D supplements.   I mentioned yesterday when I commented on Chris' post that I was outside in the sun yesterday for 5 hours planting flowers and plants.    I think you all know I've been having a LOT of muscle weakness all over my body for about a month now.  It was to the point where I couldn't stand without feeling like my legs were going to collapse, and typing was very rough for my arms to deal with.   They felt like they really had to struggle to find the strength to press on the keys.   It was horrible!   I have worked hard my entire life to build and maintain muscle, and I am very muscular.  I was really having a problem feeling so old and feeble.  This weakness was every minute of every day for maybe a month now.    It actually made me nauseous.    Well, yesterday when I came in from spending all that time in the sun, I noticed I was starting to feel stronger and not quite as wobbly.   By the time I went to bed, I had my full strength back!!!   I woke up this morning, and I still was not weak AT ALL!   The only thing that could have caused me to regain my strength was the sun.   I hadn't done anything differently other than that, and that was the first time I'd been out in the sun like that since last fall.    I started thinking about the vitamin D.   I then realized that for the past 3 -1/2 years, my never-ending neck pain got really bad around November.  It would get worse and worse all winter, and by March I would end up in physical therapy because I just can't stand it anymore.    Why did I not think of this sooner?!   I got on the internet to see if anybody else suffered from muscle twitches, muscle cramps, and muscle weakness from low vitamin D.    Yep, they sure do!!   So today after I had my blood drawn at the hospital, I headed straight for the pharmacy to pick up some vitamin D supplements!    My last vitamin D level was 45, which is not  considered low, but at my lab the normal range is 30-100, so it's on the low end of normal.    I took a supplement around 10:30 this morning.   I continued to feel great with less muscle pain and much more strength, until around 7:00 tonight.   Then I started to feel a bit weak again.  Not as bad as it has been for a month but a little weak.    I haven't wanted to take any vitamin D since my surgery because my post-op calcium has been 10.2, 10.0, and 10.2, and I didn't want it going any higher, but if my parathyroid glands are functioning normally now, they should be able to regulate my calcium no matter how high it gets, right?    And I'm not taking massive doses, so I think this just might work.     Wouldn't it be funny if all of these lingering symptoms have been refusing to resolve because I need vitamin D?!    I will keep you all posted.

Audrey


Last edited by Little Audrey on Tue May 13, 2014 10:24 am; edited 1 time in total

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