Hyperparathyroidism - the "gift" that loves to keep on giving!!

Hi Annie,

Really sorry you are going through it too.  So many ignorant GP's.  I really hope you get sorted out quickly.  If you want to have a moan or find out more, please join our group on FB.  Sallie, (who was messed about for 7 years and googled her own diagnosis)  and  who was in the newspaper has started a petition, I'm not allowed to post up links here,  to try and make the NHS more aware of this vile disease. On facebook look for Hyperparathyroid UK Action for Change  It seems the older and more "experienced" Gp's are the worst!!!  Take care, Elaine

Hi Annie  it's sort of laughable your GP thought you'd had all 4 removed,  Just goes to show how much awareness there is out there with this condition, hope your scan goes well x

Good luck with the scan from me too x

Just as well our comments are moderated here if you know what I mean!!

Hi Annie,

Have you had the most recent sestamibi yet, you said last week you were due for one this week.  I didnt see your last message.  My head is all over the show at the moment. A couple of the other girls were upset to read the connection about miscarriages on the group.

I had a sestamibi today but still none the wiser and I almost know it is going to come back negative.  I couldnt wait until December 4th so I went privately to our NHS hospital but still had to wait three weeks.  Anyway, after I had it done today I obviously asked the operators of the machinery and they said we are not allowed to say, it will take 10 days, so I will possibly get a huge bill and still no answer for days and then it might not be good news.  Last night I felt quite depressed as yet another girl on the group (there are now 3 of them in the same situation) obviously got HPT badly, but nothing showed up on the sestamibi but something showed on the ultrasound (just like with me) and they are suggesting, as with the other two women, venous sampling which possibly means an overnight stay in hospital where they try to track a rogue adenoma down that is in an unusual place.

Let us know how you get on or better still, if you havent already join us on facebook Hyperparathyroid UK Action for Change

Elaine x

Hi Elaine

Sorry for the delayed reaction!  I know exactly what you mean about head all over the place! 

My sestamibi is next Friday so I'm just a little behind you on it ... the U/S showed nothing at all so either they're not enlarged or hiding - like you, I don't really expect the sestamibi to find them (I have no faith) so may well be facing the venous sampling that you mention - I'd never heard of it before. 

I do so hope mine show as enlarged - I keep imagining them whipping them out and hey presto! pain all gone!  I just don't think my life is that uncomplicated though.  Had a first visit to the Pain Clinic today after a year's wait and they basically didn't want to know as med tests are still ongoing - I didn't really expect it to help anyway but highly frustrating!

I'm really surprised the people scanning you privately refused to tell you at least what they could see even if they couldn't give you any conclusions (like me you probably know more than the doctors by now and can very easily draw your own conclusions).  I've gone down the same route before now and have always found they will discuss it me whereas they won't when they are wearing their NHS hats.

I do hope you get your answers very soon - perhaps the med reports will be done first as you're paying - I would be inclined to keep pestering the secretaries who can be very helpful if you get them on side.

Do let us know

All the best

Anne

 

Thanks for your reply.  The operators didnt even know I was private, didnt make a big deal of it, was only the receptionist at Addenbrooke's said, in a loud voice you havent filled in the insurance details (of the paper I had to fill in they sent) so I said I dont have insurance, oh she said so you are self funding!!! I have written to the endo secretary today, and when the hospital send the bill in, if it is huge, I will query how they would justify that.   Anyway, according to the very interesting short video I watched by dr norman at the para clinic, sestamibis should only be done just prior to an op.   I am not even thinking about venous sampling, particularly if its an overnight stay as I have four cats at home, lol!

Strange thing is on the group of us on FB, there are around 400 members they all seem to know straight away whether the blue light flashed up showing an adenoma or it didnt and I am sure they cant all be private patients.

Anyway, good luck with it all,

Elaine x

Yes its better to have insurance, But I thought Dr Norman page says they also take medicane. Yes the scans are done to see where your glands and thyroid are at least thats what the consultant said. She said also that those scans arent accurate, cause they hide sometimes the tumors as they call it . Good luck with everything  hope it goes well for you  Marie

Hi Anne

my US also showed nothing but the sestamibi scan did, when I had mine I could see the first couple they did on a screen & could see myself which one was the rogue one, it showed brighter than the rest, so don't give up hope, you may be lucky 

I have also chased the surgeons secretary when I all came to a grinding halt & she was very good, I now have my appointment with the surgeon next week, I really don't think that would have happened for months if I hadn't, or rather my husband hadn't, I'd given up the fight, didn't have the energy or I would have just cried on the phone lol, I'll keep my fingers crossed for you x

Hi Karen, Glad to hear your scan show something, Mine never did,But when I had to go to radiation for cancer ,The radiologiy said he felt them even thou the doc couldnt. I feel tired alot too Marie

Hi Marie, I have been following your conversation with Elaine, I'm so sorry, you really are going through it aren't you!! It's so hard to explain how you feel, I'm  exhausted but can't sleep for longer than a couple of hours, incredibly  thirsty & then constantly peeing, significant osteoporosis so aching & the dreaded tremors, my boss actually asked me the other day if I had been out all night drinking as I had the shakes lol! If only! Really couldn't stomach a glass of wine at the moment. I hope things start to improve for you, do you have good support at home? It's a bit of a lonely place when you feel so poorly, sending you the best of wishes & hope you get better really soon xx

Hi Karen, Sorry for all the things you going though too.I have problems sleeping too,I been having pains though my right leg and also noticing I having problems eating too get a stomachache also. Its weird I have tremors 2 thought it was a family history,My uncle has the same.I do have a good husband at home and a daughter going to college also. I hope you have someone too.You are right it does get lonely when I feel alot of people dont understand what we are going thru. Thankyou so much for your well wishes .Having osteoporosis is terrible I ache constantly or its either the medicine I am on for that,It scarey when I always seem to get another symptom. Hope you get better also . Prayers help alot. Will be praying for you.  Marie

Hi Karen,

I hope all goes well for tomorrow with surgeon appointment.  I am still plodding on, dreading going to see what the post has brought each day. xxx

Thank you Elaine, worrying about it now, I'm just scared he's going to put me on a massive waiting list, I'm going to be so upset if that happens, I know exactly how you feel waiting for that postman, I hope it's good news for, keep me updated xxx

Hi Karen,

I dont know whereabouts you are, I just tried to find Andy on the FB group was going to send him a link about John Lynn as you cant post links on here.  Anyway, what I wanted to say was that if you can raise about 6 thousand pounds you can get it done privately.  I was quite surprised a couple of week ago I spoke to Professor Wishart's secretary, he was big at Cambridge NHS on parathyroidectomies and specialises in breast cancer but went private about 5 years ago.  I was very surprised when she said that he charges a thousand but the Nuffield charge the rest!  I am jumping the gun I know as I feel in my heart my scan is going to come back negative but I was thinking Wishart would be my choice as Cambridge is my area and I would have to raise the money somehow.  Howevever, despite his expertise he does not do IOHPT measuring this is intra operative HPT measuring which they do whilst you are under, so that put me off a bit.  Then someone told me about John Lynn, he is getting on a bit but very experienced and if you google John Lynn Endrocrinology surgeon who will see his website where he says about getting enthusiastic amatuers doing the op and he also advises not to go anywhere where they do not do this intra operative thingy.  I just read a few minutes ago on our FB group, that someone had a adenoma removed, this was in Ireland she says " when they tested the gland during the surgery my pth measured at 180 and levels dropped to 20 directly after it was removed"  so I can understand now why this Mr Lynn says this is important.  I know he is down in London so would be more expensive than Cambridge.  There is also a very good surgeon in Oxford Mr Radu Mihai.   Anyway, just hope that you get some good news tomorrow.  Will be thinking of you. xxx

Afternoon Elaine, hope you're feeling ok, just got back from my appointment and it was as I feared, the dreaded waiting list, the surgeon was a very nice man and seemed to know what he was talking about, explained the op & what they do during it, so was feeling really confident until the time to go when he slipped into the closing conversation 'we'll get you on the waiting list' I asked what sort of time we were talking & he said a few months, I asked a few months as in 2/3 months or 6? Yes you guessed it, a good 6 months! I just can't imagine being like this for that long, my first visit to the hospital was February this year & it's been on going since then. So disappointed. I live in Bristol and I think I'll get myself on FB so I can take the time to check it all out myself. Let me know when you hear anything, I'm sure you're getting anxious now xx

Am very sorry to hear this Karen and not surprised, not sure about Bristol but yes please do join our group.  I have been trying to persuade poor Rach to do the same.

Still no news for me.

E xx

Hi Anne,

Just wondering how your sestamibi went?  I have still heard nothing, just a rather large bill!!

Elaine x

Hi Elaine

Sorry for the late reply, stress at work!  Thank you so much for asking.

I'm not sure what to think - I couldn't see the screen, it was positioned out of sight of the scanner.  They spent an extra half hour taking more scans "as my thyroid had had work done, to give the doctors the best possible overview" (I've only got half of it left!) - when I asked if they could see anything they declined to say, just saying that the "surgeons" would have to decide what was the next course of action.

Now to me that sounded hopeful - more scans and talking about surgeons rather than "doctors" - but as hubby pointed out, taking more scans probably meant they couldn't find anything, or they would have stopped looking! 

Ah well, like you I just have to wait to see the consultant to get the results - and the longer it takes (NHS) the less likely they've seen adenoma(s).  I fear that may be the case with you also as they're not rushing to get back to you.  But as we all know, sestamibi scans aren't completely reliable so if nothing found, where then?? 

It sounds crazy doesn't it, wishing for them to find growths in us, but (to me at least) it's positive because it's a visible, tangible thing about which action can be taken with hope of a permanent cure - albeit having to have constant calcium level checks as they would probably remove the remaining 2 glands.

I'm really surprised you've not heard anything with having gone private - I would have expected them to be much quicker - but a relative is having similar problems.  When do you see the specialist?  I do hope you get the desired results!

Annie x

Sorry you are still waiting, same as me, nobody there to speak to, turns out the sestamibi was private but no consultant, and I got the bill in on friday for £577 from Addenbrookes!   This waiting is driving me mad.  Spending the day in bed today, feel really ill again, worse than usual with the heart racing an nausea.

Hope you hear something soon.

Elaine x