New member

Hi everyone, like many I have been reading posts since January 2014 but have been unable to comment.

I was diagnosed with hyperparathyroidism in January 2014. Last year I was struggling with bowel problems and feeling dizzy, sick, tired, bone pains and generally not feeling myself. In Jan I had some bloods taken which showed calcium levels 2.62, corrected calcium 2.66, low serum creatinine levels of 49 and above range monocyte of 0.84. Not sure what the last two mean? My GP then requested another blood test which showed calcium level 2.58, corrected calcium 2.62, PTH 81 and vit D 35.

I saw a Endocrinologist in March would referred me for a urine test to rule something out (brain fog) more blood tests which showed corrected calcium of 2.65 not sure what the other blood results are awaiting a letter. I am waiting for a ultrasound scan and a bone scan.

Feeling sooo tired at the moment I feel like I am scrapping the bottom of the barrel of my energy resources. I have been off work a couple of weeks but hoping to go back on Monday.

I feel the surgery route is a long way off, the endocrinologist said he would only refer me for surgery if the ultrasound scan and or bone scan show anything going on.

Oh well hope everyone on here is having a good day?

Hi Mel

Welcome, but so sorry that you have to be here, if you know what I mean.  Sounds like you've been having a really rough time; everything you have described most of us on here have experienced, so we all understand what you're going through, how miserable, ill and worn out you're feeling. It makes me feel so frustrated to hear, yet again, another endocrinologist being reluctant to refer for surgery!  Parathyroid adenomas often don't show up on ultrasound, mine didn't on two consecutive USs, plus not showing any signs of bone disease yet doesn't mean you don't have primary hyperparathyroidism!  In fact that's a good thing, you don't want to wait until your bones are knackered by osteopenia or osteoporosis before they consider you for surgery, the whole point is, if you're diagnosed with PHPT, to get the surgery in order to prevent this from happening.  Although my Sestamibi scans were positive, my two ultrasounds were negative and I also had a normal DEXA scan, yet in February I had a 2.5cm adenoma producing huge amounts of parathyroid hormone removed!

My feeling is Mel, if you entered all your results in the normagram primary hyperparathyroidism would be indicated as very likely.  If your endo diagnoses you (or even if he doesn't...) but won't refer you for surgery, ask your GP to refer you to another for a second opinion, or even direct to an endocrine surgeon. If you're prepared to travel out of area, being referred via Choose and Book, or can go private like some of us have had to do, there are some endos and surgeons who some of us know are sympathetic towards an early surgical intervention.  Don't be fobbed off, this is your body and your life and if you need to fight to get the treatment you need to help you get better we're behind you all the way!

Keep us posted Mel.

Jasmine x

Hi Jasmine

Thanks for your reply, I'm glad you had your surgery how are you feeling?

Its great to talk to people who have been through or are going through the same thing.

I see the endocrinologist in June and hopefully all my results will be back and hope he see`s sense.

Take care

Hi Mel and welcome, glad to have you aboard.

Your story as Jasmine has said is familiar to all of us so you are amongst friends. If you have a diagnosis then you are part way there so well done on that.

If you can find the right surgeon then surgery may be not that far off. I haven't yet had scans (due this month) but my surgeon has said not to worry if nothing shows up, it will just mean he will have to go on a hunt for the baddy. I would rather something shows so that he can do the minimal op but sods law it won't ! He is very against Endos who make patients wait until things get worse and they end up with more problems that could have been avoided with early referral to him. So if your Endo tries that then probably best look for someone else who doesn't dither.

Whereabouts do you live ? we will be adding a list of surgeons to the reference page shortly so that may be useful to you.

All the best

Nelly

Hi Nelly

Thank you for setting up the forum, I am finding it so useful.

I live in Derbyshire and would be interested in any recommendations, at this moment in time it will have to be NHS surgeons.

Good luck with your scans.

Take care

Mel

Hi Mel,
I am very new here as well and just starting to get my head around all this HPTH stuff. I have yet to see the endo but so far I have had 3 raised blood calciums and one high PTH suggestive of HPTH. I must admit the last couple of weeks, some of my symptoms are easing, the constantly feeling thirsty is the worst for me although feelings of impending doom are a close second. I wonder if it is to do with more sunlight and Vit D as the days get longer? I find Winter each year harder to cope with. I hope our local hospital endo is sympathetic, there is no information on the website about him at all so I guess he is new. Each time I go to see the Rheumy dept its yet another new consultant, no continuity at all.
Nice to meet you and Hope your next appt is positve.
Sue In Lincs

Hi again Mel

The list of surgeons is currently still on the old forum (you may have already seen it) we will just be transferring it across to here, one problem might be we don't know when that list was last updated (quite a time ago I would guess) so some of the doctors may have moved on or maybe retired.

I will be adding my chap from Bristol but possibly I will wait until after the event ! I see there are 2 in Sheffield on the list which is up in your neck of the woods or you may find one you like the sound of and have to travel further afield.

I did pay to see my Endo purely to speed things up but to have the surgery privately was very expensive so I am seeing the same surgeon but on the NHS.

Anyway we are jumping the gun here, first thing is to get your next lot of tests out the way then see what your Endo comes up with, hopefully he will be a sensible, nice man   

Take care

Nelly

....... on the subject of surgeons, I have been hearing some really positive feedback lately about Mr Robert Hardy, based in Liverpool.  He's on the list, NHS and private .....

J

Well, Mel, I don't know how I missed you here! Sorry about that. I've had a couple of very busy days and haven't been on here much.

I agree with Jasmine. With numbers like yours, I think you surely must have 1 or more tumors that need to be removed, and any doctor who really knows about this disease would agree. Your calcium and PTH are both too high.

I also had a normal DEXA scan before surgery.

I also had a negative Sestamibi scan the morning of surgery, and then had 2 tumors removed.

I never had kidney stones.

I never had elevated ionized calcium, which you all don't check in the UK, but Dr. Norman states that is what causes all of the symptoms, of which I had many.

I was a tough case, but I knew I had HPT right from the start. It was a long, hard struggle to get my doctors to agree. I had 3 of them working on my case, and they all kept telling me I did NOT have HPT. The last time I saw my endo, she was just starting to consider it, and that was only because she took the time to read all of the printed material from Dr. Norman's site that I mailed to her. It was Dr. Norman himself who finally diagnosed me 3 years after I started my journey.

I am sorry you are suffering so badly, but keep your chin up, your time of being well again will arrive!

Audrey

Hi Audrey

Thanks for your reply.

I`m feeling less foggy today but the bone pain in my left forearm and wrist is really intense.

I`m due back to work on Monday and feel that i`m getting ready to return (after a couple of weeks off). I am a little worried that my full on symptoms will return and I will need more time off, has anyone else been in this situation? I have some medication for the Ulcerative colitis now which seems to be helping so hopefully I wont be quite so bad as last time!

Take care

Mel

Hi Mel

I also have UC, had it for 40 odd years but since starting Asacol 17 years ago I have been reasonably symptom free. How long have you had it and what meds have they given you ?

Nelly

Mel, I kept having to have a few weeks off so frequently because I just couldn't function that in the end my GP, with my CEO's blessing and approval, signed me off on long term sick leave, and my boss - who has been absolutely wonderful - agreed to keep my job open for as long as it takes. It was a bit of a pinch when my company sick pay ran out and I was no longer on salary, but there was no way I could do my job as I was. I'm due to return next week but it's still negotiable if I still don't feel up to it.  I'm very lucky to have a great boss and also a great team of colleagues who have all absorbed my work during my prolonged absence.

Jasmine x

Hi Nelly, I have just started on Tuesday, to use Prednisolone twice a day and it seems to be helping a lot. Mid December was when my symptoms first started. Glad you found the right medication for you and you are relatively symptom free. I will look into Asacol if the Prednisolone stops showing progress. Take care Mel

Hi Jasmine, I`m glad you have a understanding boss and colleagues and free ready to return to work soon. Time will tell if my boss is as great. Take care Mel