Post op follow up

First topic message reminder :

Well, I'm now six weeks post op Tampa! As most of you know that was my second PT surgery, since which my calcium and PTH have still not returned to normal.  I'm seeing my endocrinologist - Dr Miles Levy in Leicester - tomorrow for a follow up appointment so I should know in a week or two, after more tests for him, where I'm actually at with all this.  I'm still having some HPT symptoms but I don't know yet if these are just lingering as part of the recovery process, or I do indeed still have a persistent primary hyperparathyroidism.  Time will tell, watch this space ......

Jasmine x

Hi Jasmine,
I am so sorry to hear that your calcium is still high and I can fully understand how that news makes you feel. I hope he contacts you sooner rather than later to discuss.  What a rotten blow after all you have been through, but you will get through this.
Sue x

So very sorry to hear, Jasmine.    Yes, this disease is horrid from start to finish, and the "finish" takes a little too long for many of us!    Damn it all anyway!  

Find a dark corner, have a good cry, and when you emerge you will be stronger than ever and ready to continue fighting to the finish!!    You know we're all here for you.    This disease will NOT stop us!!!

Audrey

Sorry you're having a bad time, be kind to yourself and remember that we're all here for you. xx

Thanks everyone, really appreciate your kind words and support. Think I would go under without it ..... I'm just so sick and tired of it all, feeling very sorry for myself at the mo and wondering just what the heck is it going to take for me to be rid of this wretched disease!!!!! Sorry peeps, don't mean to wallow in self pity when so many of you are suffering so badly yourselves.

Jasmine x

Don't be silly, we're all going through this to one degree or another and understand completely. For me the main thing is that one day I'm fine and the next I'm sobbing because I've lost a piece of paper and just can't cope. Before I got the diagnosis I was convinced I was losing my mind.

Is it possible to get through this disease without some self pity?    I can't imagine how it would be.    You're not alone, Jasmine.    We all have to do our share of wallowing.   It is nice, though, to know when we are wallowing, we have our forum friends right by our sides, ready to listen and help pull us back up.   And we WILL pull you back up!!  We're not going to let you stay down!     Even if at times we have to do a bit of limping, we will march on!!

Audrey

Oh dear Jasmine, I'm thinking of a nice dark cupboard myself, had another vertigo attack this evening so I'm not happy.

I hope your Dr L has some words of wisdom for you soon, we are all behind you and hopefully tomorrow will be a better day, I think we could all do with a better day right now  

Chin up

Nelly  

Thanks Nelly.  I'll be OK tomorrow.  Just had a bad day and that wasn't what I wanted to hear, but I'll bounce back up after another torrid night's sleep .....   

So sorry to hear about the vertigo, Nelly!     Hopefully, you will feel better tomorrow too!   

Onward we go!!!!    

Yes Nelly, so sorry I'm so wrapped up in poor little ol' me I completely overlooked that you're going through the mill as well at the mo.  Do you get nausea with the vertigo? If so maybe an anti nausea med might help?  I've also heard that travel sickness tablets can help with dizziness but I don't know if it works.  Never tried it myself.  Hope you have a better day tomorrow.

Jasmine x

My turn to chip in and add my commiserations to you Jasmine for having a horrid day. So ghastly and we are all feeling for you. I've only just read this thread so replying late in the day, but hope you can feel all the warmth and love coming your way. I don't know how you keep going and being so positive with all the disappointment and let down you've experienced. You're clearly one quality lady.

And Nelly too -sorry to hear about the vertigo!

Re. Sleeping probs...have you tried Boots Valerian tabs (not the ones that are mixed with hops and other things). They helped me to get off to sleep when my sleep was so bad before I'd had the op.

Jen x

Jasmine you have every reason to be peed off and fed up, don't you fuss over me.

But yes I have Stemetil tablets for nausea which I only get when the dizzies last hours but I prefer Stugeron travel pills which work really well. Odd thing is the last 2 attacks have only lasted seconds, thank god, but I do feel wobbly for ages afterwards. Have made an appt for next week so the doc can tell me there is nothing they can do   

Wishing everyone a better day tomorrow   at least the sun will be shining.

Nelly

Night, Night, everyone. It's another day tomorrow and I hope things will look different in the morning.
Lots of Love, Tigerlily xx

Jen, I've tried things like Nightol and the other one that I can't remember the name of (grrrr - memory!) which is basically just a 'drowsy' antihistamine disguised as a sleep remedy, but not valerian.  I'll give it a go, thanks for the tip!  Oh yes, just remembered, it's called Sominex and it doesn't work, well not for me it doesn't ....

Night night TL ...... looking forward to hearing more from you when you feel up to it.

J

I hate when you all go to bed in the UK, and I'm left here without you for a few hours.      I think you should all stay up with me.    

Jasmine, sometimes when we are having an especially rough day, it's not that we don't care about others who are suffering, but I think it's rather normal to be concentrating quite a bit on our own problems.    You are not alone with this.    I hope everyone on here knows how much I care about what all they are going through, but when I'm hurting badly enough, I just don't feel like getting on here and talking.  It's not that I don't care.   I just want to be alone and suffer all by myself.     I know you all understand this.  I think we've all had this experience.   

Nelly, my mother used to have a lot of trouble with vertigo.  I used to feel so sorry for her.   I know that is really bad!   I do hope you get some relief soon!

Speaking of sleep aids, I had tried OTC melatonin a few years ago to help me sleep.   I don't think it did much of anything.   Then my PA prescribed SOMA (carisoprodol) for me a while back.  She prescribed it to help with my muscle cramps.   I don't think it helped much either.  It just made me dizzy, and didn't help at all with the cramps.  So then instead of just getting up and walking to the bathroom 6 times a night, I got up, staggered around and crashed into walls on the way to the bathroom 6 times a night!    When I found out that this drug can actually CAUSE muscle cramps, I stopped taking it!   I knew it wasn't the sole cause of my cramps, but I sure didn't want to take anything that might be worsening the problem.    I started taking just the OTC melatonin instead.   I'm not sure if this helps either, but I wanted to take something, and I really didn't want to take drugs if I could help it.   I learned yesterday that some people  taking melatonin suffer with muscle twitches!    As most of you know, I have had nonstop muscle twitches in my right upper eyelid now for 6-1/2 months.  The other lids twitch on and off daily, along with twitches all over my face, which have now become much more frequent.  I also now have the intermittent twitches in my upper arms and thighs, and nonstop twitches in both lower legs.   So I will no longer be taking any melatonin!    I am so careful about everything I ingest, I can't believe I did not check into this earlier!    I feel like an idiot!    I don't know if this could be the cause of my twitches, or maybe it is just making them worse, but I need to find out.   I've been thinking maybe Lou Gehrig's disease or maybe Parkinson's.   I have myself scared to death!    I sure hope it's the melatonin!    

Wouldn't it be nice if we could just sleep like we did before this stupid disease reared its ugly head?!!!

Audrey

Nelly & Jasmine so sorry you are going through the mill, I hope you can get through this and keep strong. Jasmine I use the Boots valerian quite a lot as well. It's in a purple packet and it's just valerian, it gets me to sleep even though I don't sleep through the night I don't wake up feeling like I've been drugged which is a plus.
Nelly what with Edwin being hospital you really don't need to be suffering with vertigo that going to make you feel bad. 
You are very strong Ladies and when I'm having a rough day I will think of what you are going through and it will put things into perspective.
Keep strong.
Amanda xxxx

I've had my first GOOD day  since having surgery last week and haven't been on here til the end of this evening. Enjoyed catching up with all the goss.

Nite nite to all you amazing HPT warriors. So sorry we have to leave you Audrey whilst we sleep, or try to.

Jen x

Ok.   Goodnight.    Talk to you tomorrow.     

Audrey

Well, I forgot to say............VERY glad you had a good day, Jen!!!      

Hi Jasmine,

This has me stumped too. Now I'll have to do some digging on the subject....just as soon as my brain fog clears...

I know you'll put together some great questions to your doc....questions that require some good hard facts.

Should be interesting to hear what he says, especially if another member here is faced with the same.

Big Hugs,
Adele

Well I've finally had my numbers from the endo's secretary (he's on leave this week so I can't discuss it with him until next week).  Not so good - calcium has gone even higher at 2.92, adjusted 2.81, PTH is 51 so high normal.  A little concerned also about a small spike in urea and creatinine levels which would indicate a further reduction in kidney function, but I was aware it was going that way anyway so I'm not panicking just yet.  Not sure where all this leaves me but it can't be good to have a calcium that high two months post op I wouldn't have thought...?

Jasmine x

Jasmine, I am so sorry to hear this, as I know you must be worried, but even though you've been through hell with all of this $#!+, you know there is ALWAYS hope!! We can never give up hope! I have decided if I too should need more surgery, as much as I don't feel like taking another trip to Tampa, if that's what it would take to make me completely well, I would be ok with it. I do understand, though, that another trip to Tampa would be no small thing for you, coming all the way from the UK.

I don't know everything there is to know about this disease, even after researching it extensively for a few years now, but can there possibly be a chance your numbers will still come down? I mean, it's not written in stone that if your numbers are low immediately after surgery, is it? Heck, my numbers aren't too low either! I keep hoping mine will drop some too. Guess we'll have to hope and pray together. Like I said, though, if more surgery is needed to make us well, we'll just have to do it! As much as we have been through with this darned disease, we aren't stopping now! I know your case is much more complicated than mine is, already having 2 surgeries on your neck, but I KNOW there is someone out there who can help you, IF you do need more help! Chin up girl!! Better days are ahead for us all!

Audrey

Blimey Jasmine that's not what you need is it, no wonder you feel like C**p. do you still think it's PTH based or is it renal ? What a worry for you and not to be able to speak to consultant doesn't help.
Can you contact Tampa and ask advice ?
Hope you get some answers.
Amanda xxxx

Wow Jasmine that is 11.6 US numbers if I figured this right. Please don't take any calcium supplements. I am panicking for you. Don't let me stress you out but there has to be a answer for this. Do your know if urine calcium is high. I don't know what to think. A gal on FB ended up in the hospital with ca level of 14 post op, but she was taking to much calcium. I think you said in a post you were not taking any calcium,  I hope your endo is good and can help you with this. Best wishes  Kathi

Thank you ladies for your support.  To be honest I'm still trying to get my head round it; with having my first post op calcium and PTH only just above the higher reference range I was expecting it to be maybe around the same or hopeful it would have dropped into range, so to see it that high - in fact it's higher than my highest pre op number - came as a bit of a shock, so I'm dithering over what to do next. I think I'll probably wait for an opinion from the endo then maybe contact Dr Norman with this information.  On his advanced diagnosis web page he talks about high calcium normal/high normal PTH plus slightly elevated urea and creatinine as a sure sign of primary hyperparathyroidism, so with that in mind I'm thinking the bloomin' thing is still persistent.  Geez already, what's a girl got to do to be rid of this thing ....!

Jasmine x