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newbie to forum

Post by keir on Fri Jun 19, 2015 5:19 pm

Hi everyone. My name is Keir and I'm from Manchester. Diagnosed with hyperparathyroidism couple of weeks ago. Met with endo day before yesterday. Just trying to get my head around diagnosis really. My Calcium levels are a steady 2.85 but not really sure what that means. The day after meeting endo I got a date through for a scan on 9th July. Have felt like crap for about 2 years. Pain in bones, muscles and joints but just thought I was getting older, have just turned 49. If anyone can tell me what to expect after scan I would be grateful.Thanks

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Re: newbie to forum

Post by Hadleigh on Fri Jun 19, 2015 8:12 pm

Hi Keir and welcome to the forum,

Its a bit quiet on here right now so you may not get many replies but hopefully a few will pop in and say hi.

So your calcium is quite high, do you have a pth result ? Do you know if you are having ultrasound and sestamibi scans ? usually they are done on the same day as the docs should compare the results, not unusual for scans to be negative but it doesn't mean there is nothing there, a good surgeon should be happy to go in and search for the offending article!

Have you had a dexa bone scan ? if you are getting bone pain you may have osteopenia which is one of the joys of hpth and also low vitD is part of the package.

Hopefully your scans will show where the adenoma is, if not don't let them tell you because they were negative it isn't hpth, it just means the scan didn't pick it up. My ultrasound showed nothing but the mibi did even if the position of it turned out to be wrong ! One of our members had negative scans right before her op but then had the adenoma removed minutes later, so scans can be wrong.

So next after the scans you should have an appt with a surgeon, make sure he or she is experienced with parathyroid surgery as the success is dependent on them knowing what they are doing, many don't !

The op should be straight forward and only needs a one night stay although some hospitals do it as a day case, if you can I advise you stay the night as calcium levels post op can dip and you need monitoring.

Anyway that is in the future and we can talk you through that nearer the time, getting a diagnosis is the biggest battle and 2 years seems to be the average time it takes, getting better should hopefully be much speedier Smile

We are here to help so just shout if you have any worries or questions and keep us posted on the scans.

Nelly
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Re: newbie to forum

Post by keir on Sat Jun 20, 2015 8:45 am

Hi Nelly. Thanks for the quick response and the what's next info. My slow diagnosis partly down to me to be fair. Typical bloke putting things off for too long then things confused because I was also told the pains in my toes was because of gout as I had high uric acid levels.gout treatment helped a little but still in lots of constant pain rather than gout flare ups. I'm under Mr Sayed at Salford Royal Hospital. He said my calcium levels weren't that high! Can you give me a list of questions I should ask my gp and endo about. I had blood and urine test last week at first visit to endo but waiting for results. Don't know what to ask other than calcium level when results come back. Will ask about the scan. Letter says it will take 4 or 5 hours and they inject you with radioactive stuff. Thanks so much for the info and support. Keir

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Re: newbie to forum

Post by keir on Sat Jun 20, 2015 8:51 am

Also have to go for bone density scan and one other scan. Think that might be ultrasound. I should have written it all down as my memory is rubbish. Seeing endo again on 29th Sept when he said we will look at options. I just want it removed

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Re: newbie to forum

Post by Hadleigh on Sat Jun 20, 2015 10:13 am

Hi again

It sounds like your docs are doing all the right tests, getting all this done is a massive battle you seem to have avoided, well done.

Have you had kidney function tests ? as you have high uric acid it is possible your high calcium, probable high pth and gout are a kidney problem, something to rule out.

The 4-5 hour scan is the sestamibi scan, they do a scan then give you the injection then take scans over the next few hours, the scans take about 20 mins so you get a break in between each one, having said that different hospitals have their own way of doing things so yours may be slightly different. The other scan would probably be the ultrasound.

2.85 is quite high and will make you feel pretty awful, of course doctors will tell you otherwise but they are not the ones having to live with it ! You do need to ask what your parathyroid level is, if that is high or high/normal it is a  sign something is amiss, I assume it is high because your docs have arranged all the tests.

As you have the tests done be sure to keep a printed record of all the results, important that you keep track of them as we can never rely on doctors to look back and join the obvious dots ! 

As you are having all the right tests done I don't think there is much more you can do for now, your doctors seem fairly on the ball,  hopefully your scans and bloods will be enough for a straightforward referral to a surgeon. 

There is a vague possibility they may suggest a wait and watch approach which is never a good option as it will never get better doing that. If this did happen you would need to walk away and find an Endo and surgeon who understand this disease better. 

So for now the questions you need to ask are results of PTH and vitd plus kidney function if done, if not then worth doing.

Hope that helps but do shout if I have missed anything.

Nelly
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Re: newbie to forum

Post by Admin on Sat Jun 20, 2015 10:23 am

Hi Keir

Allopurinol tablets are normally given to prevent gout with hugh Uric acid and Colchicine when you have an attack.
Also, your fluid intake is important for avoiding gout, so you need to ensure that you drink enough, especially so when the weather is warm.

Edwin
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Re: newbie to forum

Post by Hadleigh on Sat Jun 20, 2015 10:40 am

One other thing is a kidney scan for stones, you might have to insist on this one but if you have stones due to the high calcium you need to know and at some stage get rid of it or them before it or they cause problems.

I have one or possibly 3 depending on which scan they look at scratch. I am having Lithotripsy to shatter them, so far 2 attempts have failed which is very annoying.

Nelly
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Re: newbie to forum

Post by keir on Sat Jun 20, 2015 12:50 pm

Just received letter from hospital to arrange bone density thingy. Will sort that out on Monday for ASAP. Thanks for the advice regarding stones and kidney tests etc will definitely ask about these. I've had kidney stone before but will remind doctor of that. I'm constantly thirsty and peeing all the time so I will try and remember to measure how much I'm drinking each day and keep a note. Thanks so much again for all your help and advice. Only other thing I can think of is if anyone knows if Salford had a good reputation for survey in this area of medicine. Everything I've seen suggests biggest thing towards positive outcome is skill of surgeon with this particular procedure. Anyone any experience of Salford regarding this. I'm happy to travel to where ever if it means getting surgeon who will check all the glands and has good track record.

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Re: newbie to forum

Post by Hadleigh on Sat Jun 20, 2015 1:19 pm

Surgeon expertise is very important so if you can find a good one all the better.

I can give you 3 names

Mr Robert Hardy in Liverpool
Mr Fausto Palazzo  in Hammersmith
Mr Justine Morgan in Bristol 

Justin Morgan did my op and several members have been treated by Fausto P.

Your previous stone may have been related so worth checking again.

Nelly
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Re: newbie to forum

Post by Amanda Lynne on Sat Jun 20, 2015 1:24 pm

Hi Kier
Your DR's do sound like they are on the ball. The sestamibi scans and dexa scan are very straightforward and sestamibi does have a bit of hanging around but nothing scary. I second everything Nelly & Edwin have said, I would make sure you have copies of every blood test/scan you have done, it's invaluable 1) to be able to understand your calcium/pth levels and their variations 2) if you need to see any DR/surgeon who is out of your health authority as they won't have it on their systems. Hopefully it will go smoothly for you and all the tests show positive and your Endocrinologist is knowledgable concerning Parathyroid disorders and will refer you to a good pth Surgeon. I can't recommend any in your area but I'm sure someone on the forum can.
Amanda xxxx
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Re: newbie to forum

Post by keir on Sat Jun 20, 2015 2:29 pm

Many many thanks. Never even heard of pth a few weeks back am so glad you have been able to get me up to speed as it were. Feeling a lot more confident about the future now. Last couple of years have aged me so much I can hardly believe it

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Re: newbie to forum

Post by keir on Sat Jun 20, 2015 2:32 pm

Hi Nelly I've got my fingers crossed your stones get sorted soon

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Re: newbie to forum

Post by Amanda Lynne on Sat Jun 20, 2015 2:42 pm

Hi Kier
Unfortunately many of our GP's have said the same thing !!!!! Which is a worry.
Amanda xxxx
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Re: newbie to forum

Post by pilipala on Mon Jun 22, 2015 12:41 pm

Hi Keir,

Welcome to the phpt family! I'm not surprised you have memory problems with that level of Ca. 

I can't give surgery advice since I haven't made it that far (yet) but when I do my questions for the surgeon will be:
'How many parathyroidectomies have you done in the last year?'
'Will you check all four parathyroids?' 

You're definitely doing all the right things by researching this throughly yourself. You cannot rely on your doctors being knowledgeable. Unfortunately most of them have very out-of-date misconceptions.

Another thing to research is post-op Ca drop symptoms. If your body is used to 2.85 and you have a successful op you may start to experience low Ca symptoms the following week. These are temporary but can sometimes be severe. The doctors may say your levels are within normal and it's something else. It isn't. It's not the overall Ca it's the rate of change that's important. Low Ca is easily treated with Ca tablets. Familiarise yourself with the signs for after your Op and keep an eye on it.

As Amanda says get copies of all your test results - it's very useful. I also record all my hospital calls and appts on my phone so I can remind myself what was said. Much easier than taking notes.

Hope you don't have too long to wait. Please let us know where you choose to go for surgery and how it goes.

Best wishes,

Dee

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Re: newbie to forum

Post by Hadleigh on Mon Jun 22, 2015 1:09 pm

Hi Dee, good to hear from you cheers

How are you doing, any news ?

Catch up soon,

Nelly
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Re: newbie to forum

Post by pilipala on Mon Jun 22, 2015 1:12 pm

I'll post an update on the main thread...

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Re: newbie to forum

Post by keir on Mon Jun 22, 2015 9:00 pm

Hi got bloods back so perhaps someone can explain it.
Calcium is 2.92
PTH is 14.9 with reference range 1.5 to 7.6
Vitamin D was 29.5
Calcium excretion 0.093
Letter says they want to start me on fultium d 800 because vit d is low.
It also says it would be acceptable if the serum calcium is below 3.0.
Don't think that's acceptable to me

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Re: newbie to forum

Post by keir on Mon Jun 22, 2015 9:16 pm

Thanks for getting back to me Dee and everyone else. It really is appreciated.

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Re: newbie to forum

Post by Hadleigh on Mon Jun 22, 2015 10:02 pm

Keir your calcium and pth are really quite high, taking the 800iu may make your calcium increase which you don't want but the low dose may be ok.

Many of us can't tolerate vitd supplements so don't be surprised if they make you feel awful, just don't take them, they probably won't increase your vitd anyway as the cause of the deficiency is the hpth so until that is fixed your d will stay low.

I hope for your sake they are not going to sit back and wait to see if taking the vitd cures the problem, it won't. 

A few weeks before my operation my calcium was 2.72 and pth 8.1 so you can see your levels are quite impressive ! My vitd has hovered  between 12 and 24 ish for years, never managed to raise it any higher.

Hopefully your Endo will do the right thing and refer you to a surgeon asap.

Nelly
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Re: newbie to forum

Post by keir on Mon Jun 22, 2015 10:23 pm

Hi Nelly
I hope so too. Was worried when letter to my gp said calcium below 3.0 was acceptable! acceptable to who?? I need a couple of solpadeine just to get out of bed in the morning. Thanks for help with blood results i just keep fingers crossed after scan on 9th July they get me referred to a surgeon asap

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Re: newbie to forum

Post by pilipala on Mon Jun 22, 2015 11:31 pm

Taking Vit D would not be acceptable to me at all.

Get your Drs to check their medical textbooks. One of the functions of PTH is to increase conversion of calcidiol (the 25(OH)D type of vit D they test) to calcitrol in the kidneys. With a PTH of 14.9 you are burning through that vit D and are going to get a deficient test result regardless. By taking the supplements it won't improve your vit D results and you risk increasing your Ca which is way too high already. 3 is a madeup upper limit, it's meaningless. A third of pHPT patients will actually have Ca less than 2.6 (me being one of them) and I get symptoms when my Ca swings. It's especially bad when I've taken vit D (in any form - I've tried them all). 

The vit D might not affect you, it might just burn through your body at a rate of knots, but personally I wouldn't try it with that Ca level.

Point out to your Dr that Vit D will resolve post surgery and hopefully your other symptoms too. 

Sorry, I get very ranty about this. So many patients being put at risk because Drs don't understand very basic biochemistry.

All the best,
Dee

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Re: newbie to forum

Post by keir on Tue Jun 23, 2015 7:55 am

Thanks Dee will definitely take this up with doctor and avoid taking d supplement. A few people have said it just made symptoms worse so thanks for the heads up I will avoid took after surgery.

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Re: newbie to forum

Post by Tigerlily on Sun Jul 26, 2015 12:52 pm

Hi Keir
I've been absent from the forum for a some time and will be posting an update soon, but in the meantime I wanted to let you know that there is a Mr Barney Harrison at the Royal Hallamshire Hospital in Sheffield who was on an old list of surgeons (on the former forum we had) who is reported to be experienced in PTH surgery.

He is also an adviser to the AMEND forum set up to support patients with the MEN syndrome of endocrine disorders.

He might be worth checking out in your area for a second opinion, as I agree with Dee and everyone that allowing your serum calcium to get to 3.00 is based on really old medical information.

Keep us posted on your progress.

Love from Tigerlily xxxx

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Re: newbie to forum

Post by keir on Sun Jul 26, 2015 2:29 pm

Thanks for advice Tiger lily. Had nuclear scan thingy on 9th July. Had DEXA bone scan Friday just gone and am having ultra sound scan tomorrow. Will let you know how I'm getting on when I get results. Had blood test last week so hopefully get that result this coming week. Only testing calcium level. Hope everyone is ok and coping with their "difficulties".

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Re: newbie to forum

Post by keir on Sun Jul 26, 2015 2:32 pm

Forgot to say big love to everyone xxx

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