Quiet on here

Where is everyone ? Off out partying again 

How are you doing Brigitte ??

Rachel was it this week you had your scans or is it next week ? 

Lucie did you have any luck with your GP agreeing to regular testing ?

Anyone else have any news ????

I'm still here, bit better but still fairly crappy, have stopped the calcium as it really doesn't agree with my stomach so probably not a good idea but needs must. Neck is still quite painful which is annoying 

Oh well have a great weekend everyone.

Nelly

I was thinking the same thing Nelly. I don't really have any news, same old same old, except for the fact that I've been getting really weird headaches which have gone from blinding to excruciating, similar to how Amanda gets them at the back of the head where it joins the neck. I don't usually see the doctor for headaches, but these have been something else and I had to get emergency treatment last week as I was scared I was having a brain haemorrhage or something. Cervicogenic headache is suspected, most likely due to pHPT, and I have been referred to a neurologist for an opinion.

Primary Hyperparathyroidism - the disease that just keeps giving 

Jasmine x

Sorry to hear that Jasmine, it must have been very worrying.

I may be suffering now but I am grateful that I had very few symptoms to contend with pre op, many of you on here have to deal with so many horrible symptoms

I'm now reading up on hypopara just in case I end up permanently on that side, doesn't seem to be much fun either so I will stay hopeful that it won't come to that.

Well if I am up to it I'm off to an open day tomorrow at a new Pilates studio opening up in what was a cow shed in the next hamlet, been thinking about doing it for ages and my GP keeps banging on about how good it is. My friend up the lane is dead keen so I said I would go along with her, I don't think I will be joining in the taster sessions but might partake of the nibbles on offer just hope there are some seats or I might not last long, still feeling wibbly wobbly  

Talking of nibbles Mr Admin has just made Marmite toast

See you later, hope the head gets better

Nelly

Hey everyone, glad to hear everyone's plodding along still. Nelly I hope your doing okay when ate you going back to see Mr Morgan?  I have my mibi monday and uultrasound friday.  Been feeling really rough the last few days i seem to be driving my self mad with anticipation.  Over the last year to 6 months I've noticed some weird things going on with my hands..... where my knuckles are they have seemed to thicken and widen my finfingers look all witchy and boney and lumpy...... who knows maybe something to do with it all..... All the strange symptoms creep out the wood work. 
I have a week on Tuesday until I meet the man!  I'm in the process of writing a letter to him incase I fall apart under the pressure 

Ahhhhhh
xxx

With regards to the subject of head aches jasmine, I get them too at the back of my head where my neck joins the bottom of my head..... It thumps with my heart beat and almost surges through my head! I also get pains in my head like im constantly frowning. 

Xxxx

Hi Rachel

His secretary fitted me in next Weds, not sure if i will see him or his reg. 

Bit of a pain you having the scans on different days, i got both done on the same day which made for a long morning but got it out the way. At least by now they will know how all the machines work, when i went it was all brand spanking new and they were still learning how to use them which was slightly worrying 

Good luck with them anyway, be sure to let us know how it goes.

Nelly

Hi nelly, not sure if I heard right but his usual reg is away for a few months?  Sure I heard this the other day. .... It seems easier to get an appointment with the surgeon himself than with an endo... not that I'm complaining I was offered a cancellation for Wednesday gone he actually had 2 on that day but I decided to wait until the week afyer my scans to try to maximise the appointment and go with scan results. Do you know if they tell you there and then at the scans if they find anything.
I hope your feeling better day by day and this will all have been worth it 
Rachel xx

He had a reg with him both in surgery and up on the ward, foreign doc possibly german or the like, he was also very nice and i think he said my next appt would be with him but can't quite remember now, will find out on Weds.

When i had my scans i asked what showed, they needed to look at all the mibi pics in sequence so weren't able to say at the time and my ultrasound was a puzzle as he and she (needed 2 to do it ) couldn't make out if they were looking at paras, lymph glands or thyroid tissue. 

As i have a lot of scar tissue they needed to look at the mibi and ultrasound together to compare the images. Mr M checked my scans again in theatre and said the mibi showed something on the left but ultrasound didn't pick much up. 

So its likely they won't be able to tell you much on the day with the mibi but they may see something on the ultrasound if you are lucky. Going by my scan results its hit and miss anyway as my baddy wasn't quite where the scan showed it anyway 

Nelly

Thanks nelly. I'm not sure who I am seeing Mr m with either, my endo said she will be in another clinic at ththat time so maybe be able to pop to see my with him for a few moments. I'm so desperate to get this sorted I feel my life is on hold at the moment. I can't seem to keep on top of staying hydrayed although I drink alot. And the fast heart rate on any little exertion is annoying along with everything else. The appointment can't come quick enough I'm also hoping Mr m won't judge me on my appearance. .. sounds silly buts it's happened with gps before.  I look a little unusual (my parter is a tattooist) as you can imagine I have a quite quite a few through our relationship. .... sounds silly I know but I worry. 
Xxx

I don't for one second imagine it is in his nature to judge anyone by looks, he is a surgeon and his aim in life is to fix broken people regardless of how they look.

You haven't to long to wait now and if he does agree to surgery then hopefully you won't have as long a wait as I did but don't pin all your hopes on surgery being a magic fix for all your symptoms, he told me there was no guarantee of being 100% symptom free afterwards, aim is a lower/normal calcium and pth level, hopefully ! and in my case now too low !!

Nelly

Thanks for the re assurance nelly!  I'm just a worrier! 
Agreed it may not cure all my symptoms.  Just hoping for some normal calcium levels.
how are you feeling?  Compared to before and after.  I know it will take time but I'm hoping it's positive for you xx

Since the op I have felt much worse BUT I think that is probably because of the long difficult surgery and my levels crashing, also as I  have thyroid disease as well it messes with that to so double whammy to deal with.

I didn't have any obvious hpth symptoms, (apart from calcium, pth, osteo and kidney stones) that couldn't be put down to my underactive thyroid so impossible to tell which was causing what.

If my hair thickens up and I loose the dizziness/off balance thing then I will be happy, if on the other hand I end up Hypoparathyroid then I will not be happy but what is done is done so will have to deal with it.

I am feeling better slowly but I don't yet feel like driving or going out and about, neck is still quite painful and swollen which is something I need checked on Weds.

Hopefully as you are still young you will have an easier ride than us oldies 

Nelly

I guess time will tell! It's a tricky one with symptoms as like you said underactive thyroid symptoms cross over.... hard to distinguish things. 
I've heard being hypo isn't great either. ... These underactive and overactive glands have a lot to answer for! 
Xx

Hi Nelly and all

I'm sorry to hear about your headaches Jasmine and hope you get some good advice from the Neuro. I know myself how difficult it is to function and carry on with life when you have a colossal pain in your head. I really hope you get some relief soon.

I know how easy it is to worry Rachel, being a worrier myself   but don't worry about things that haven't happened yet! It sounds like you will be in good hands once you see the surgeon and it's the waiting that's getting to you. We all remember that feeling of being in Limbo Land whilst waiting for something to happen, or waiting for the next phase of waiting for something to happen. It's a good idea to write down any questions you may think of in case you don't remember everything you want to say when you get to your appointment. I know I did and was glad I had afterwards. I wouldn't be too disappointed if something doesn't show on the sestamibi or ultrasound. I had my sestamibi the week before I saw my Endo and it hadn't been "interpreted" when I saw him though there was obviously something there and the ultrasound had zeroed in on that area and found the offending adenoma. These things can hide! Good luck for your appointments.

Nelly, I had hoped you would be feeling less crappy by now. I can recommend Pilates, though I haven't done it since the pHPT got so bad. I couldn't do it for long at a time either and ended up preferring to do it in 10 minute slots in front of the DVD player rather than an hour at a time in a class!

I'm sorry I haven't been around, but I've been trying to cope with not being well and with the disappointment of the whole op malarkey being a bit of a fiasco. I was prepared for the fact that the "symptoms I have might not go away" etc etc as a result of the op, but not the fact that the whole op experience would mess up my entire body in a completely different way, hurl me around a bit and throw out a load of new symptoms, pains and problems that no one can get to the bottom of. In a strange way, and I hesitate to say this... I almost wish for the pre-op days because although they were completely horrible and dreadful and difficult to deal with, I actually DID and COULD deal with them. These days I'm not dealing or coping with much at all and whilst everybody agrees there's something not right with me, nobody can find or agree with what it might be. 

When I came home from my lovely stay in hospital, I was terribly disturbed by the information given on the Discharge Summary of which I received a copy. I found out quite a few things about my other disease that I had no idea about, having never been told, one of which concerns something that is in my brain. I do have problems there that I have been aware of for 22 years but there was information about something else that whilst it probably won't cause me any problems at my age now if it never has before, nevertheless exists and is only present in 5% of people who have my terribly rare disease. When I eventually got to see my GP, I almost thought he'd brush that away as not being important, but in fact he was incensed on my behalf because he'd never been told either. There were some fairly major discrepancies on the Discharge notes which contradicted what I'd been told by the Neuro whilst I was in hospital and means that that I can't drive the car until it's (once again) proved that the "seizures" I had which sent me to hospital in the first place, were not connected to the disease/epilepsy which hasn't given me a problem for 22 years... It's all a mess. I'm also still having problems with the old waterworks and I was having them before the op, off and on and it's still going on off and on. So whilst I keep having blood tests etc etc no one is doing anything for me. And, because that also can be connected to the annoying other disease, everyone appears to be displeased that the Endo never ordered an ultrasound of my kidneys in about March because it might come in handy now! And whilst Genetics have actually ordered a kidney scan, "once I've recovered from surgery" no one appears to know when that will be. And whilst my GP now wants me to have one done, plus bladder, he is unable to get me one because there is already one in process. But no one appears to know anything about it. Are you with me? No, neither am I.

So that's why I haven't been around. I spend my time feeling rubbish; I feel like I'm shaking or vaguely moving back and forth though everyone assures me I'm not. I twitch on odd occasions down my right arm/hand though a lot less than when I was in hospital. I can feel faint or dizzy even when lying down. On the occasions that I get the tingling of lips, fingers, toes, I drink a glass of milk and it goes away. My calcium level is "normal" though the hospital have never told me what it is and though I just had a blood test this morning for lots more things, I noticed the GP had forgotten to add PTH to it, so I'll probably not find out again. I don't think any of this is actually connected to calcium levels any more. I think my family are getting sick of me and think I like being ill....Perhaps I've forgotten how to be well and am a hypochondriac? 

Sorry to be long and depressing, but that's why I haven't been around on here. I still care about everybody and wish you all the best with your coping mechanisms whilst I'm coping with mine.

Love and many hugs

Brigitte xxxx

Hi Nelly, Rachel, Jasmine, Brigitte,

I was just saying to my Husband recently how quiet the forum was. Rachel and Jasmine i too have the headaches nausea and terrible lower back ache, i am waiting for all my test results from FP and a operation date.
I am impatiently waiting in limbo land!!

Nelly and Brigitte, i hope your recovery symptoms improve and life gets better for you both, you are in my thoughts and it is good to hear from you and Brigitte you are not a hypochondriac!!

Take care all

Dianaxxx

Hi Brigitte

Sorry to hear you are not so good, first thing is to get those actual calcium and pth results, you need to see what "normal" is as it may not be normal for a pth patient. The ranges are taken from healthy people and don't relate to us, we need a calcium level in the lower half of the range, my "normal" according to my GP last week was 2.52 which I know is too high for me but levels can go up and down for some time after surgery so must keep on top of it with regular tests, luckily my GP does what I ask

If your calcium is low and your tingling and twitching shows it probably is, and your pth also low then you will have swinging calcium levels which is not good and will make you tingle and feel bad, you may need to take a vitd analogue to help you maintain a stable level in your blood.

Having read your story I cannot moan about my recovery, yes I have felt awful since day 1 but I'm sure that was down to my surgery being long and difficult also having thyroid, calcium and pth levels thrown out as well. I am better since rightly or wrongly stopping the calcium, will see after Mondays blood test if my levels are still out of whack and go from there, my GP doesn't have much of a clue about all this so I am going to have to sort myself out. I can't say I feel any different now to before the op but I wasn't expecting to so I'm not to disappointed. I will not be happy if I do end up hypop but whats done is done so will have to deal with it.

I have just got back from the Pilates open event, managed to survive my first outing, its very interesting and I'm sure it would help my back problem but it is quite expensive and I'm not sure how committed I could be, not really into exercise stuff apart from dog walking and even then its a chore sometimes. Will have a ponder on it.

I hope you can get your scan sorted asap and that you begin to improve, you are certainly not being a hypochondriac so put that thought right back in the box  

Hang in there

Nelly

Well, my goodness, I hopped on here yesterday very quickly to see if anything was going on. when I saw it was very quiet, I was hoping that was a GOOD thing. Looks like it was not.

Nelly, I'm so sorry you're having such a rough recovery. Hopefully, you will find some calcium supplements that agree with your stomach, and let's hope your neck stops hurting soon!!

Jasmine, I am also very sorry about your headaches! Geez, my head hurt to some extent every day for 3-1/2 years, and it still hurts some days now, but it never hurt bad enough that I needed emergency care. That must have been terribly frightening besides being so darned painful! Hopefully, the neurologist will help you out with that issue.

Rachel and Diana, I'm also sorry you are both having so much trouble! Let's hope things get better for both of you too!

And Brigitte, what the heck is going on with you?! Yes, parathyroid surgery recovery is supposed to be a good time when we feel just wonderful, and the world is supposed to be a beautiful place once again. For so many of us it is NOT!!! I am so sorry you are also having such a darned rough time! Could these seizures you are experiencing have something to do with your hormones trying to adjust now? I am asking this because I have seen hormones cause some VERY serious issues, and for many years, about a week before my periods each month, I would have some weird type of little seizures. They only lasted for about a minute, and when they were over, I became very nauseous, and the inside of my chest would burn terribly. We assumed they were being caused from hormones since they always happened about a week before a period. I had not had any of these for several years. I figured it was because I am now going through menopause and have close to no hormones left. Then last week, I experienced one of these darned things! I guess maybe my hormones went nuts at that time. That was very strange! I do hope they can get you straightened out very soon, and you start to feel much better!

I myself have been having a few very bad days. Yesterday was so frightening, I was about to call my doctor for help. I have had trouble with very stiff, painful muscles in my neck, upper arms, inner thighs, and in the fingers of my left hand for 4 years straight. This is very painful and annoying. I was praying it would all stop after parathyroid surgery 11 months ago, but it did not. Three days ago it actually got worse, and my arms and legs started also aching badly. Yesterday when I awoke, I was in a LOT of pain all over my body. I was also VERY weak, just like I was before I started taking the Florinef for the adrenal insufficiency about a month ago. My arms, hands, and legs also started jerking almost nonstop yesterday. I was really getting scared! I had no idea what was happening to me! Of course I hit the internet to see if I could figure this out.

I first searched for diseases that cause stiff muscles and nerve issues. I immediately came upon adrenoleukodystrophy. Oh, my gosh, I am still worried about this! This is a very rare condition that affects 1 of every 20,000 people. It starts off looking like adrenal insufficiency, but then starts to affect the nerves and muscles. Several forms of this disease are terminal! It sound like, though, when the adrenal glands are involved, it can be treated with adrenal medication. I do not think this form is terminal. I was afraid to research any further, because I wasn't sure if I wanted to know. I did save the name of the blood tests that need to be performed to determine whether or not this is what is wrong with me. I will be asking my endo about this test at my next appointment this coming Tuesday. If she won't order the test, I will find a doctor who will!! I will be seeing my neurologist on the 24th of this month. Maybe he will order it for me. I really need to know if I have this disease!

I am finally having a better day today, even after that big scare. I woke up with less pain and a little less weakness and jerking. I have to say that trying to type yesterday with all of that jerking was very annoying and scary. I'm happy it has stopped.

Now, I have something sort of funny to tell you all. When I went to take my meds this morning, I tossed about half of them into my mouth, and just as I tossed them in, I realized I did not see the little 1/2 tablet of Florinef. I looked at the other half of the pills in my hand, and it was not there either! I went and got my little, plastic, weekly pill minder to see if the Florinef was in the other compartments for the rest of the week. There was only 1 day left filled. The others were emptied for the week. There was no Florinef in that one either!!!! I almost started laughing. THIS is probably why I have been feeling so crappy for a few days, and this is probably why I have been having so much trouble with weakness, shaking, and jerking for a few days!! I must not have had any adrenal medication for 5 days!!! It was scary to think I still depend so much on that medication, because I was hoping my kidneys would soon wake up and start producing renin again, which would trigger aldosterone production in the adrenals, which might allow me to stop the adrenal medication. Looks like that time has not arrived yet. That's ok though. There's still hope.

This morning was a chilly morning here. It was 47 degrees when I awoke. The sun was shining brightly, but there was a little breeze. I had planned on going to my granddaughter's soccer game this morning, but as badly as I have been feeling for a few days, I wasn't sure I wanted to attempt it. Yesterday I got myself all ready to try to go shopping, and I felt so awful, I never left the house. This morning since I was feeling quite a bit better, I got ready, and I did go. I had a GREAT time! It felt so good to be sitting out in the fresh air and sunshine. I wore my light winter coat and took a blanket and gloves. I felt like an official, little, old lady! I did not need the blanket, and I did not need the gloves, but I wanted to be prepared. I am going to go get my Halloween decorations from the basement now and put a few of them up. I usually have them up by now, but I just didn't feel like dealing with them. I think I can handle them today. Don't get me wrong, I am still not feeling well, but it's a big improvement from yesterday!

I do hope you all will soon have one of these better days too!! Hang in there! We WILL all be better some day!!

Audrey

Hi Nelly

Hope you are on the mend? 

It has been very quiet on here this week. I received a letter from the Practice Manager last week to say that he was going to discuss it with the Senior Partner of the Surgery and I still haven't heard yet. I'm really hoping it's a positive response   

I hope everyone is enjoying their Sat evening and have a good Sunday

Xx

Hi everyone, I don't know where everyone else is but I have been spending huge amounts of time sleeping - the 12 week course of vit D has ended and with dark nights I think my levels are plummeting again because my headaches are back and I'm falling asleep at about 7.30pm. I can't figure out why they know I have low vit D cos of my hyperparathyroidism but stopped the tablets. Until I have my op surely it'll keep dropping every time I stop the them? Anyway, enough whinging. Med to go and read all the posts I've missed...

I wrote a big ole long post to each of you and it disappeared .

And I am not one to write long posts. Oh good grief.

Well the bottom line was all my love to each and everyone of you. I hope and pray we will all be well soon.  Kathi

P.S I miss Amanda. Hope your doing ok.

That is really weird, when I wrote my message I swear there were only a couple of messages on here, I think I opened the page early and then didn't refresh before I posted mine. I am SO sorry, I wouldn't have ignored all the others (in fact I would have left mine off because it's nothing compared to what some of you are going through!). Brigitte and Nelly, I really hope things start going right for you soon. Audrey, it's frightening the difference one little tablet can make, hourly that's the reason for your recent symptoms and not what sounds to be some terrifying disease!

Apologies again for seeming to ignore everyone else's posts, makes me look very self centred but it was a mistake - if I could do the little emoticons it'd be a very sheepish one - a sheep:-)

Well i just did a post and hit the wrong button before sending 

Meggy don't be daft, no need for a sheep, it is so easy to miss messages especially when they run onto several pages, im doing it all the time 

If you can tolerate the Vitd you can just keep yourself topped up before your op, it is better to have a good level pre op to avoid getting "hungry bone syndrome " post op. My level was around 40, my surgeon would have preferred 60 but Vitd and me are not friends 

Well im not feeling great today, probably did to much yesterday and the pain in my neck is getting very tiresome 
Wishing you all a nice day

Nelly

Lucie keep us posted on the docs decision, hopefully a plan can be agreed for testing, shame this all takes so long. 

Oh Kathy, so annoying when an epic post goes awol, happened to me yesterday 

Hope everyone else is doing ok today, if not so good then wish you better.

Nelly

Just been having a read of everyone's posts. Sorry to hear things are not great for everyone . Nelly I'm hoping things will get better for you and good luck with the blood tests tommorow I hope the calcium level has settled a little. 
Audrey and bridgette my thoughts go out to you. Wish things were simple for you! My memory is so terrible I struggle keeping track of the posts,  have to keep re reading them!  Lucie it's good to hear things are moving for you! 

I have been a picking my brain today trying to figure out the effect thyroxine may have on calcium levels. Maybe a co incidence but mine have dropped since taking thyroxine.  Maybe this has something to do with calcitonin which now maybe being produced properly by the thyroid.  
Hope everyone is having a not too long suffering sunday
rachel xxx

Very sorry to hear everyone is struggling so darned badly!   It sure will be nice when we're all well again!   We must all continue fighting and working toward that goal, as tough as it is!

Rachel, don't worry about not being able to follow all of the posts, especially mine.    We all have trouble with that.    I tend to post books when I post.   Heck, half the time I can't follow my own posts!  

Yes, I too sometimes lose messages after typing them.  I have learned to hit 'CTRL and C' as if I'm going to copy and paste a message, before I hit 'Send.'   That way if it is lost in cyber space, I can just paste it into another message box and resend it.    Although, sometimes I hit something on the laptop, and I'm still not sure what it is, and either a part of the message or the entire message simply disappears!     I do this so quickly, I still have not determined what it is I am hitting!  

Good luck to us all through our journeys on our way to better health!!

Audrey