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parathyroid- high calcium? Wow never heard of it.

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parathyroid- high calcium? Wow never heard of it.

Post by paulfoel on Fri Sep 09, 2016 9:27 am

Well had blood test at GP for something completely unrelated and they asked me to go back a month later. Turns out high white blood and high calcium (2nd time they did full blood count too).
Never heard of parathroid before but some of the symptoms look very familar to me. Especially the ones about being difficult to deal with from partners point of view lol. I've just known that its not right for a while.
So what happens now? Do I need another test PTH? Or did they do that?
Or it it cut and dried now with high callcium it deffo needs sorting. Im late 40s, overweight so bit concerned that I need to get it sorted if thats it.
For instance, how long will I have to wait in the uk for an operation?

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Re: parathyroid- high calcium? Wow never heard of it.

Post by Hadleigh on Mon Sep 12, 2016 9:21 am

Hello Paul and welcome to the forum

Sorry I didn't reply earlier but we have had internet problems, its back but not sure for how long !

If this is your first high calcium result (do you know how high it is ?) then you will need another test plus parathyroid, vitd and phosphate, all done at the same time. If those results are abnormal then a referral to an experienced endocrinologist is the next move, he/she must be experienced in parathyroid disease, many are not ! Many doctors believe parathyroid problems are caused by low vitd so give their patients mega doses of vitd, this is wrong in the vast majority of cases and taking huge doses of vitd will bump the calcium up even higher, so be very wary if your doctor tries it.

If you are found to have primary hpth then ultrasound and sestamibi scans are done to detect the adenoma before surgery, although they don't always show up, that shouldn't deter a good surgeon.  If you are diagnosed with secondary hpth then they must find the reason, one being kidney disease. There is also a genetic form of hpth which is fairly rare and I'm not really up in that one but a few of our members are.

It frequently takes a while to get to a diagnosis and then to surgery unless you have a very good team of doctors who know what they are doing, hmm very rare. For me it took over a year to get from GP to surgery and I had to see an Endo privately as the NHS were hopeless, mind you she wasn't great either.

I would suggest your first step is to ask your surgery for a printout of your results so we can help with interpreting them, if your calcium is only mildly raised then you will probably need a few more before the GP gets excited, if your calcium is very high then your doc should be on to it now and finding out why.

Hopefully others will be along to add their thoughts, I have rushed through the basics in case my computer packs up again but do come back with any more questions, we have lots of info in the reference section so do have a browse.

Take care
Nelly
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Re: parathyroid- high calcium? Wow never heard of it.

Post by paulfoel on Mon Sep 12, 2016 10:13 am

Thanks Nelly.

I've been doing a lot of research on it. Especially a website for a place in Tampa.

I've had one blood test with high calcium and had another test last week. Then had letter to see GP. I've got appt tomorrow so I assume its because its high again.

To be honest, looking at the symptoms I was like WOW to be honest. It would explain A LOT.

Things is I thought monitoring was no good. Its either high or not. Theres no such thing as a little bit high - its like a little bit pregnant lol.

I guess they'll give me a PTH test next to confirm though. (although dont 20% still have normal pth levels?).

Not a fan of the NHS. Way too too much wait and see what happens. IF I get a postive then I want it sorted asap - at the moment (if I can attribute to this) then its ruining my life :-(

I'd definitely do private referral even conside paying for op privately. No good having money and struggling (or being dead) :-(

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Post by Hadleigh on Mon Sep 12, 2016 11:03 am

The Norman site in Tampa does give lots of information but they also make it sound very simple, black and white, which unfortunately isn't always the case, we have several members who went there for surgery with mixed reviews.

There is growing evidence that many people do have hpth with a normal calcium level, in fact my surgeon was talking about this on a tv news report a few weeks back, he gets very frustrated with the wait and see approach that many Endos take. However if results are boderline it does make sense to monitor for a short while to make sure it isn't just a blip, although surgery is on the whole a straight forward op we wouldn't want it if not necessary.

I would say choose your Endo carefully, find out if they have lots of experience in hpth before making an appt and if/when it comes to surgery check our list of surgeons, they need to have done a good number of pth ops for you to have a successful outcome, very very important as a bad op can cause further problems.

Surgery is 100% successful for some people, they feel instantly better but for others it takes a lot longer, there is no guarantee all symptoms will be resolved especially if you have had this lurking around for a while, which is often the case. My surgeon said the only thing he could promise me was a lower calcium level and anything else was a bonus.

Carry on researching because the more knowledge you have about it all, the better, you may have to educate your doctors !

Keep us posted on your progress.

Nelly


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Re: parathyroid- high calcium? Wow never heard of it.

Post by paulfoel on Mon Sep 12, 2016 11:57 am

Thanks Nelly. Yes the Norman site does make it sound very black and white!

Interesting to note that some dont find it that simple.

BTW. Are you in the uk? I am - so unfortunately at the mercy of the NHS. Not a fan to be honest.

Not even sure what the wait list is either. I may even pay myself for everything to be honest. At least then I get to choose surgeon if needs be.

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Re: parathyroid- high calcium? Wow never heard of it.

Post by Hadleigh on Mon Sep 12, 2016 12:38 pm

Yes I'm in Somerset, most of us on here are in the UK but we have a few members from USA and thereabouts.

I went to Spire in Bristol to see my Endo and Southmead in Bristol for surgery, Spire is very nice but expensive, I had most of my tests done by my GP but a couple were done at Spire which was costly. My surgeon was excellent and does operate at Spire but I saw him under the NHS, the care I received from him couldn't have been better but the hospital was a nightmare despite being brand new and ultra modern.

My op was complicated as I had previously had thyroid surgery so that made it difficult, took about 4 hours as the offending article was not were originally thought, scans were not very helpful !

I did wait a long time for my surgery, can't remember exactly but definitely over 6 months, obviously going private is preferable but painful on the bank balance !

Some Endos will take a self referral so you can cut the GP out all together although you will need to be monitored afterwards for a while so handy if they will oblige. I self referred but kept my GP on side so I could have all the tests done without having to mortgage the house.

I hope your appt tomorrow proves useful and you can get the ball rolling, do let us know how you get on, don't forget to get a printout of results, important to keep your own records.

Nelly

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Post by paulfoel on Mon Sep 12, 2016 2:45 pm

Not too far from me in Newport, S  Wales then!

Yes hoping to keep my GP on side but in the past, for other things, they've been completely useless. So arranging at first a private referral will probably be what I do - after all its not "that" expensive.

Saying that, IF it is causing all the symptoms I'm getting then Im keen to get it sorted asap.

Its causing me problems at the moment to be honest. (Or something is!).

I've had issues with depression/anxiety in the past and thought I'd been having a bad time of it last year but it was somehow different than before. Other stuff I'd also put down to just getting older but I've been struggling with energy/concentration and all sorts. So its got me wondering....

Im not the fittest, thinest, or most healthy person in the world so it scares me that, if I've got this, its not helping. On a mental level, if I dont sort something soon I'll be driving my kids/wife away.... :-(

Also, I do contract IT work. No work no pay. 2/3 weeks off ill would  be a lot of money for me. Im already stuggling some days with concentration etc so it makes sense to get myself sorted asap. Also before my client notices Im a bit off and gives me the boot too!

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Post by paulfoel on Mon Sep 12, 2016 2:45 pm

I was going to ask GP for printout too. Are they generally ok with this?

I asked the nurse last time and they were REALLY vague as if they didnt want to tell me.

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Re: parathyroid- high calcium? Wow never heard of it.

Post by Hadleigh on Mon Sep 12, 2016 3:30 pm

Just wondering if you have had thyroid tests done recently or in the past ? it seems quite a few of us have both thyroid and parathyroid issues and the symptoms of both can be very similar, it might be worth getting thyroid tests done if you can just to rule it out.

You are legally entitled to a copy of all your test results, they cannot refuse, some surgeries might charge a few pounds for the printouts but no more than that, just tell the receptionist you want copies, they will usually have to check with the GP before printing them and if they ask why you want them just say for your own records, here is the link: http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/what_to_do.aspx

You would need time off work to recover, I was told not to drive for 2 weeks so maybe not ideal for you but best not to rush back and mess yourself up, anyway a way to go before you get to that worry.

We are heading to Cardiff on Friday to drop youngest daughter off at Uni, I'll wave as we go through Newport !

Nelly
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Re: parathyroid- high calcium? Wow never heard of it.

Post by paulfoel on Tue Sep 13, 2016 3:58 pm

Well that was a turn up for the books. This time my Calcium levels are well within normal.

I asked the doc = 2.18 (which I believe is under 9 in usa measurements).

So maybe not for now. Possibly I'll ask for another test in a few months to see.

HOWEVER, I do have raised white blood cells count STILL. not sure what that is.

GP is doing more tests. Initally I went to the docs with suspected Crohsn (hence the blood tests to start with).

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Post by Hadleigh on Tue Sep 13, 2016 4:41 pm

Calcium levels do go up and down so you do need to keep a watch on it, did you have pth tested ? because levels do fluctuate it can be years before a suspicious pattern is seen and hpth is suspected.

Raised white cells can mean infection, inflammation, stress and many more things so further tests are usually done to find a cause but it may turn out to be nothing, just a blip which happens.

So good news you aren't needing to do battle with Endos and surgeons for now, I hope you find out soon what the problem is.

All the best
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Post by paulfoel on Tue Sep 13, 2016 4:49 pm

@Hadleigh wrote:Calcium levels do go up and down so you do need to keep a watch on it, did you have pth tested ? because levels do fluctuate it can be years before a suspicious pattern is seen and hpth is suspected.

Raised white cells can mean infection, inflammation, stress and many more things so further tests are usually done to find a cause but it may turn out to be nothing, just a blip which happens.

So good news you aren't needing to do battle with Endos and surgeons for now, I hope you find out soon what the problem is.

All the best
Nelly

Thanks Nelly. Yes I think like I said I'll keep an eye myself. Some of those symptoms are spot on :-(

Good luck Friday with your daughter. I wont be able to wave I'll be a bit further north at work in Gloucester. :-)

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Re: parathyroid- high calcium? Wow never heard of it.

Post by Tigerlily on Wed Sep 14, 2016 11:53 am

Hi Paul
Just popped on here quickly and seen your posts - and I echo everything that Nelly has said.

That 2.18 Calcium reading is quite low, so, yes, ask for another test in a month's time - and ask for it to include PTH and Vitamin D from the same blood draw in view of the higher Calcium reading previously.

It seems as if your GP is on the ball with the testing though to try and get to the bottom of your raised white cell count, which is good.

The problem with PTH disease is that the symptoms cross over into a number of other conditions, and as Nelly says many medics are unaware of the disorder and the way it manifests - but I certainly had the cognitive fog and the irritability (almost lost my marriage ...) that you mention, and I was diagnosed with 3 hyperplastic PTH glands. I felt 200% better when they were removed!!

So keep an eye on your calcium levels and try and get a PTH test done from the same blood draw, as this will tell us a lot. Basically, a high-in-the-range PTH level at the same time as a low calcium is usually normal as they live in an inverse relationship with each other in health. But a high PTH with a high-in-the-range calcium is suspicious for primary hyperparathyroidism.

Do read as much as you can of the info on www.parathyroid.com. It is very valuable stuff, although I agree that sometimes things are not as black or white as the Tampa people paint it.

Keep us posted on your progress and we'll help as much as we can - Best of Wishes, Tigerlily.

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Re: parathyroid- high calcium? Wow never heard of it.

Post by paulfoel on Wed Sep 14, 2016 2:13 pm

Thanks tigerlily. I intend to get retested and pay myself. As suspected my GP has now lost interest now that the last reading was low.

Yes the irritability thing. I'll be getting divorced if I dont sort something out :-(

To be honest, I was a little disappointed with the test results. Bit weird attitude I suppose but it was like well heres an explanation for everything and it can be fixed.

Now Im still the same and dont know whats wrong with me.

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Post by Hadleigh on Wed Sep 14, 2016 2:47 pm

Believe me Paul it's not weird, we all get that sinking feeling when results come back normal just when we think we have found the cause of all our problems, it's very annoying and even more so when the docs loose interest, can be hard work.

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Post by paulfoel on Wed Sep 14, 2016 3:34 pm

@Hadleigh wrote:Believe me Paul it's not weird, we all get that sinking feeling when results come back normal just when we think we have found the cause of all our problems, it's very annoying and even more so when the docs loose interest, can be hard work.

Nelly

Aye. I'd even decided I didnt mind if I had to have an op if I could be cured!

oh well, as I said, I'll pay for my own tests and keep an eye on things.

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Post by Little Audrey on Sun Sep 25, 2016 12:07 pm

Howdy all!!    Sorry I have not been on here for so long.  Crying or Very sad   LOTS has been going on with my health.   I will post something separately regarding this.   I actually tried getting on here several days ago and was unable to.   I was VERY afraid the forum had gone kaput!  It was a terrible, sinking feeling, because I LOVE keeping in touch with you all.    I was elated this morning to find you were still here!!

Paul, I am so sorry you are having such a rough time.   Yes, health issues can take a toll on marriages, especially chronic issues.     It took me 3-1/2 years go get diagnosed with HPT.   At one point, my husband told me to just stop talking about it, because he was tired of hearing about it.    He was no support at all.   When the time came for me to go to Tampa for my surgery, I asked my sister to go along with me.    I figured if my husband couldn't support me when I needed him, why would I want him along to celebrate the happy end result?      So I do understand where you're coming from on this.

I totally agree with everything Nelly and Tigerlily have said here.   They are old pros at this crap.  Wink      Yes, keep an eye on that calcium and PTH.   Get them checked as many times as you can, and as Tigerlily mentioned, get them tested from the same blood draw always.

As for the elevated white cells, I do hope you can find the cause of that.   I would suspect some sort of infection.    I actually just had blood drawn 2 days ago, and my white cells are low.   They usually are very low/normal, but this time they were low.   Too bad you can't send me some of yours!   Laughing

I do hope you get this all sorted out soon.  It is awful being sick and not knowing the cause!

Audrey

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