parathyroid- high calcium? Wow never heard of it.

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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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  • Posted

    Hi - most people haven't heard of parathyroid disease and usually confuse it with thyroid problems because the 4 small parathyroid glands are located behind the thyroid.  Don't know about the white cell count relating to it, but it is diagnosed by 2 blood tests, calcium and parathyroid hormone (PTH).  If those are both high then you most likely do have a parathyroid problem.  The calcium goes high when one of the 4 parathyroid glands develops a growth on it (benign in almost all cases) and can no longer regulate the calcium in the body in a tight range.  Most people have a very low Vitamin D too when they have this.  Don't worry, it can be cured but it will mean the little growth and gland will need to be removed.  Although most people have not heard of this, it is actually the 3rd most common endocrine disease.

    You will get lots of help and info from other people on this site too.   There is a long waiting list but it can be done privately and there is also a specialist centre in Tampa Florida who deal with this.  You will need a very good specialist parathyroid surgeon.  Lots to think about..  There are 21 possible symptoms with this disease btw but not everyone gets them all.  Best wishes

    Rosemary

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    • Posted

      Thanks rosemary. I'd never heard of but being doing a lot of research.

      I've found the website for the place in tampa lots of info on there. Funnily enough I'm in florida next week on hols - I should pop in lol. $12K for the op though!

      To be honest, some of the symptoms are spot on for me. Its spooky. 

      Im off back to docs on tuesday so we'll see what they say.

      In a way I'l be glad if it is that. It would be an answer to a lot of things if you know what I mean. And at least it can be sorted easily.

      But I do wonder how long on the nhs? One thing though Im not letting them fob me off which is common. Apparentluy high levels are high levels. theres no wait until it gets higher about it. Its been compared to being told your a little bit pregnant lol.

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    • Posted

      I had heard of Primary Hyperparathyroidism as I was working in a surgery for 11 years as an Administrator (and typed thousands of hospital referral letters)  but it was still a shock to find I had it but it was erroneously diagnosed as Polymyalgia Rheumatica at first and I had the wrong treatment and a whole year was wasted during which the wrong treatment made things worse.

      Glad you found the Tampa website.  The website has been updated and improved since I went there and it really is a mine of very helpful info.  $12K is no more than you would pay here privately (even less in some cases) but it would simply NOT be the same operation in the UK.  It's a pity you couldn't send your results to Tampa before you go on holiday so you can have the op there and then have a lovely holiday afterwards like I did.  As it's done with only a local anaesthetic in usually less than 20 mins, you can leave the clinic in about 1-2 hours after as it's so minimally invasive.  I know it's still quite expensive but you will only get worse if you wait and the success rate is much higher when you go to a truly experienced surgeon.  For me the cost was most definitely worth it as my adenoma was ectopic and didn't show on the scan  (it is ectopic in about 20% of patients and was deep under my collar bone buried in my thymus gland) but they still got it out through a 1" cut with a local - they are truly brilliant.  They also do re-ops every day for people who have had failed surgeries elsewhere.  It is the place where doctors and surgeons themselves all go because they know the surgeons there are second to none.  As soon as the adenoma is removed, then you can start to heal and the calcium will start to go back in your bones and you will feel a lot better.

      I think the wait on the NHS varies but I've heard it can be up to a year.   Yes there is no point at all in waiting, you can't just say well it;s only a little tumour - it will just get bigger and cause more symptoms and damage over time.

      Good luck with it all and let us know how you get on.

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  • Posted

    Well seems like my last blood level was ok. 2.18 (which I think is under 9 usa measurements).

    So, for now at least I guess Im in the clear. BUT I dunno maybe in a month or two I'll pay for my own test again (its cheap) just to be sure.

    Well, white blood cells STILL raised though. Maybe I do have Crohsn after all (which is what I went for first off!)

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    • Posted

      The parathyroid experts in Tampa say you must make sure your ionized calcium is measured because many people with hyperparathyroidism will have serum calcium levels that are normal, but their ionized calcium levels are high. It is the ionized calcium levels that make people feel bad. The problem is that most doctors aren't aware that ionized calcium should be measured in parathyroid patients, and very few understand that the symptoms parathyroid patients get are related to high ionized calcium levels. 

      Something to bear in mind.

      Fingers crossed you don't have Crohn's although it would seem that white blood cells can be raised in Crohn's due to inflammation (I know someone who has it) but I have not heard of a high white blood count being associated with parathyroid disease.

      Wishing you all the best.

       

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    • Posted

      I have seen your posts on the other parathyroid website.

      I would just like to say that the NPC in Tampa IS the best place to go and I speak from personal experience.  I know of the case in question that had problems but she had already been operated on twice here (and the surgeon removed a lymph node by mistake) and he damaged her vocal cord. He is also the surgeon in my area who would have done my op if I had not gone to Tampa but then mine didn't show on the scan and I was told he would not operate if he could not see it on the scan.  But it is difficult when there is so much scar tissue to carry out re-ops to removed what someone else has missed.

      That's why it is better to go to the experts as soon as you know you have it.  The cure rate in Tampa is very nearly 100% (higher than anywhere else in the world) and of course everyone's recovery varies.  I had no problems at all, I left the hospital about an hour afterwards with no problems at all, no pain no sickenss, nothing.

      Going there means you have just a local anaesthetic so much less risk than a GA (and risk to the vocal is almost zero since you don't have a GA with a tube down your throat) and they also have the special gamma proble which helps to locate the tumours - which we don't have in this country.

      My local surgeon applied for funding from the NHS for one and was refused.  Even if you have it done privately over here, it's still not the same minimally invasive operation that you get in Tampa and you could be on the operation table for hours if they can't find the adenoma.

      My adenoma was ectopic (buried in my thymus gland in the top of my chest), this happens in about 20% of people but they still found it with the help of the gamma probe and got it out through just a 1" cut..  They do 3,600 ops a year and only that one specialised op and I am so very glad I went there, I have my life back now, worth every penny - I would do it again in a heartbeat.

      That is my personal experience of going there and I saw another lady on the pier after her op and she was fine too.  Nowhere else does as many ops as them and you need someone who does a lot of ops.  Also they operate either 2 or 3 surgeons per surgery - not just one, so lots of experience for every op.

       

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    • Posted

      Thanks Rosemary,

      So what does a standard blood test measure then? Just serum calcium and not ionized calcium? Like I said, I think I will have the full calcium tests done myself in a bit - i think this covers both.

      Yeh we'll see about the Crohns I guess. Something completely different!

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    • Posted

      Glad it worked out for you Rosemary. I know what you mean - I've seen a list and surgeons in the uk do the op at most about 50 times a year.

      Not cheap to go to tampa though. Isn't it about $12000 and then travel on top.

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