High PTH, and was born with Idiopathic Hypercalcemia - anyone else?
Posted , 3 users are following.
I was only the sixty-ieth-odd baby to be diagnosed. Was pretty much sick for the first six months of my life. After diagnosis I had a special diet (still the have the green book somewhere) and eventually started to thrive.
Fast forward to now (aged early fifties). I've felt off and ill and generally not good, including fuzzy headed and ouchy, for some years. Last year I went to the NHS GP. Did a blood panel and all returns okay, so no further forward. Still feel rubbish on a daily basis. Go back and the next NHS GP says only low-ish Vit D, so prescribes high strength Vit D. I checked the info paper - don't take if have calcium issues, so I check with NHS GP. Have your calcium checked he says, but no further discussion. I got a bit worried, and I'm sick of feeling sick, so I mortagaged an arm and a leg and went to see a private GP and have bloods done. He came back with a PTH of 94 and tells me I need to get it followed up.
I went back to the NHS, as I've paid a lot in and I really would rather not have to sell my lorry to pay for an operation. NHS GP was quite positive, once we'd got past the 'who is the other doctor' piece and ordered another blood test. I felt hopeful that he wasn't going to be like the ones I'd read about, until he said "It's only slightly raised", at which point my heart sank - if there's a range it means that anything above it is wrong!
Anyhoo, tomorrow is 'results of blood test day' and I am stressing ever so slightly. Is it going to be a fight? Is the wonkiness I was born with a normal thing in this world of parathyroidism? Does anyone have any wise words of wisdom?
0 likes, 24 replies
elainec33 MrsMozart
Posted
So sorry you have been suffering like this and so unusual. You would be most welcome to join our group on Facebook. Sallie Powell who went through 7 years of hell before being diagnosed created this group and has worked so hard that now she has actually achieved her "reward" in helping others by having guidelines added to NICE due to the total ignorance of Gp's and endocrinologists on the diagnosis of hyperparathyroidism. Please join Hyperparathyroid UK Action4Change There will be many who will not only be interested in your story but you will also get plenty of support. Just say Elaine sent you. It is a private group so we have to be careful who joins. If you don't have a chance to join tonight, I wish you luck for tomorrow. Regards Elaine
MrsMozart elainec33
Posted
Thank you. I'm not on FB, but will ask a child if I can borrow access.
I've been. The PTH is up, from 94 to 117. NHS GP still saying 'slightly raised'...!
He said Vit D. I said I'd read this is what happens. He asked what I wanted. I said referring to Oxford surgeon. He said have to go through local endocrinologist. He's sending the letter. D n V are looking into the high PTH level with normal calcium, to find out if Vit D can fix (I'd be happy if not need an op!).
MrsMozart
Posted
Feel absolutely rubbish today. Nauseous, headache, shaky, tingly hands (both today) and the feet are joining in. Could cry at the drop of a hat and concentration is out the window.
D is checking out the private option. A friend says I don't have to be referred to local endocrinologist, so that's another battle to go deal with.
Why can't the NHS GP just go with the path of least patient resistance, it would save them a lot of money in the long run!
Sorry for the rant folks.
MrsMozart
Posted
I've decided to use this as a tracker of the process... Sorry if it clutters up anyone's feed (I'm not sure how it works here).
I tried the NHS Choice booking line to get clarity on the NHS Choice, i.e. where it states I can choose the clinical team does that mean all of it, but he didn't know. He was kind and as helpful as he could be. I then rang the hospital I want to be referred to, and the secretary said her understanding was that yes, I could choose where I was treated, i.e. all of it, so I left a message for my NHS GP to say I where I want to go.
All of this is very hard when my brain feels like Swiss cheese, I can't remember things, and the chances of me crying for no apparent reason makes converstations difficult (this post has taken a few goes).
Will go see if D1 has managed to decipher the wonkiness that I am, in that I'm one of the 4% who has normal calcium levels, high PTH, and at least 80% of the symptoms...
Ah well. Onwards as they say.
elainec33 MrsMozart
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elainec33 MrsMozart
Posted
Sorry I hadn't seen your other posts since this morning. If you go down the private route I think the initial consulation with a parathyroid surgeon is around £250. What many do is go for the initial private consultation with a surgeon and then if he thinks there is a definite adenoma, you can ask to have him arrange for scans etc. on the NHS.
Sadly I went down the private route since June of last year, had an absolute rubbish endocrinologist, and since have gone to a fairly well known surgeon who unfortuately is a bit old school and wanting to increase vitamin D even though I am not deplete to see what it does to the pth and calcium levels. Have not heard anything back from my Thursday 14th appointment with various blood tests.
To date I have wasted £6000 so dont make the same mistake as me paying to see endos privately as the blood tests are absolutely ridiculous £105.89 for a vitamin D with the Spire but I can get it done via the Birmingham NHS website with a kit for £28, and have used this efficient service twice.
MrsMozart elainec33
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Thank you Elainc33 - I can't get to grips with how this choice thing goes...
I left a message telling my NHS GP that I wanted referring to Greg Saddler at the John Radcliffe hospital in Oxford. Are he and My Mihai part of the same team do you know?
Thank you so much for all your help on this. I'm trying to figure out how to get onto the FB site - my work means I can't have my name on any social media.
MrsMozart elainec33
Posted
Thank you, and sorry to be taking up so much time and space!
I don't know if I'm just being dense or if the wonkiness is stopping me from thinking straight
NHS GP said - he'd refer me to local endocrinologist and that NHS Choice allows me to choose the surgeon;
My reading - should be an endocrine surgeon and not an endocrinologist, and I get to choose who to go to;
I left a msg with NHS surgery to say I want to go to Greg Saddler at the John Radcliffe hospital, Oxford;
So far no call back from NHS GP Surgery to say yay or nay.
But, going by your story (which I'm so very sorry to read lass), to get things speeded up (which I desperately need to do as all this wonkiness is having a knock on effect on our business, which is putting peoples' jobs at risk), I should go for a private session with Mr Mihai?
Sorry if I'm just being dense.
elainec33 MrsMozart
Posted
That's difficult about not being able to go on social media. I had a neighbour who worked for cancer research and they were told not to go on anything like that because of the animal welfare people (of which I am). Also these days if you dont use a legitimate sounding name, FB dont accept or make you change it. Perhaps just make up a name that sounds feasible, not like Mel Bourne ha ha which was one of mine and I since found it has been removed. Probably didnt help using an aboriginal painting as my profile picture, ha ha. I'm not sure how the choose and book works either. I do know that one of the members really rates Greg Sadler who did her op.
MrsMozart elainec33
Posted
Aye, it is a pain. I think 'someone' thinks I should have my own name up there in lights and dobs me in everytime I hop on with anything else.
I might have to reconsider though, as I'd like to joing the FB group.
MrsMozart
Posted
Update:
NHS Route: NHS GP Surgery - just rang to say can't refer to endocrin surgeon, but can to endocronologist at John Radcliff, so I said go for it.
Private Route (which might be just the consultation): I've emailed My Mihai direct and await a response, though expect it might take a couple of days.
elainec33 MrsMozart
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MrsMozart elainec33
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Update no. (lost track...): Have an appointment next week with a consultant surgeon! Who needs a holiday, or new kitchen, or to replace the car, or, or, or ;-)
Will update when I've had the appointment and have, hopefully, some idea of what's next.
MrsMozart elainec33
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I think I keep hitting the wrong reply section button...
Are the 'Endos' the endocrinologists? What do they do (or given their nickname maybe I shouldn't ask!).
elainec33 MrsMozart
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Yes endocrinologists who seem to be pretty useless when it comes to hyperparathyroidism. Known as Endo plus the door "knobs", lol!
MrsMozart elainec33
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Update 22/08/16:
All symptoms are getting worse. More than hacked off with it all. Back to reading as much as I can on the subject and getting sciency daughter to translate the more technical papers into simple language for me.
Saw the endocrine surgeon. It was meant to be a private appointment, but apparently because my calcium levels are normal, my symptoms so much that of someone with high calcium, and because I was born with too much calcium, then I'm "Unusual and interesting". I'd much rather be bog standard and normal wonky! Anyhoo, I digress, he said it was going to get very expensive as I'll need genetic tests, so put me back into the NHS system (I'm in the UK).
My NHS GP still can't refer direct to a surgeon, so long story short, I've been referred to an endocrinologist who works with the eondocrine surgeon I met with. I've been fast tracked and the appointment is this week. I'll report back.
I think one of the things that helped was sending the surgeon an email, saying how I feel on a daily basis. It helped him to understand what I'm going through. I've also started keeping a diary as my symptoms vary in severity on a daily basis, with some things being a constant (the hand and feet tingling) and and tiredness/fatigue, and others come and go during the day (mainly the bone pain and the shakes - could really do without the shakes!).