High calcium level s

[Hiibilly]

Hi all I received a letter from my rheumatologist this week I saw him just before Christmas. He suspected that I may have rheumatoid arthritis as well as PMR but my blood showed no signs of the inflammatory markers although he did say that this will need checking as I tapper. They did find however that my calcium level was very high and I have been told to stop taking the calcium and Alendronic acid to. After 3 days I feel less stiff and sore. Has anyone else experienced this? Anyone else experienced this?

[PMRpro Ambassador]

I hope they are also intending checking parathyroid hormone levels. Especially if the calcium level doesn't fall to normal range. Was calcium not checked when you were diagnosed? It is a fairly standard test and I would have thought a "bone panel" would have been done before starting alendronic acid.

parathyroid.com/parathyroid...

It may be just too much calcium - I hope it is - but it does need checking out.

[Hiibilly in reply to PMRpro]

Hi PMR pro thank you for replying I will bring it up with my GP. Sadly the confirmation of PMR coinsided with start of lock down. Previously to that I was seeing my GP every week and having regular blood tests. I had two previous blood tests to the one before Christmas and nothing was mentioned about calcium level I just knew the link between prednisolone and osteoporosis. I didn't start taking the calcium until a few months after I started the pred. I just assumed that my bloods suggested I needed it. Thank you again I will read up on it so that I can get things checked out. I have felt so ill and very down all year but I have been deteriorating since 2018 with muscle pain sore hands and feet and generally have little energy for anything. I had put it down to having experienced several years of chronic stress, which of course it could well be, but it is so easy for doctors to say its stress too. I will ask the questions better safe than sorry. Thanks again x

[PMRpro Ambassador in reply to Hiibilly]

mayoclinic.org/diseases-con...

could be PMR couldn't it?

[HeronNS in reply to Hiibilly]

I think virtually everyone on this forum will say the advent of PMR occurred with some sort of stress, whether on-going as in a stressful life or work situation, or acute, as in an injury or accident. PMR is not "just" stress, but stress itself can be the final trigger. More reading for you (and your doctor?) :

americanbonehealth.org/bone...

[Hiibilly in reply to HeronNS]

Thank you, HeronsNS, yes the on set of the PMR was rapid and very distinct. Initially my response to pred was the difference between night and day, and on 15 mg I felt ok as long as didn't over do things. It's the tapering that has been a problem.I had thought for years that I might have Lupus because of the sunsensivity I struggled with and the alopecia which became alopecia totalise and since 2017 and had been back and forth to the rheumatologist with sore hands, feet and other joints but not lupus. I battled chronic nodular prurigo which I eventually was put on Methotrexate, this was after the dermatologist tried light treatment which after 3 ,1 min exposure caused very deep burns at the back of my knees, my breasts and my inner thighs. This then became infected and took months to recover from. I was taken off the Methotrexate in December 2019 and started feeling unwell in Jan 2020. All that on top of my sons mental illness and losing my mum and father in law it very quick succession.

I am not sure why I have splurged all that other than you all are souls that have also been on very difficult journeys and I haven't had any one to share all this with. I am not sure what the point was except that you can say why my GP might have been saying you have been very stressed. I am quite tried of battling and just long to feel well. The present circumstances do not help. Sorry 🙏 had a bad week

[HeronNS in reply to Hiibilly]

You can say all you want here! Believe me, many of us can relate. I can't tell you how many times this forum, and another one now sadly nearly defunct, have helped get me through tough patches.

I think you hit the nail on the head when you say you felt ok as long as you didn't overdo things. Unfortunately there are stresses, such as grief, which are unavoidable. And with the pandemic it's almost impossible to get professional help, a couple of sessions of sympathetic counselling could mean so much.

My situation is not at all like yours, but with my knee preventing me from having quality exercise and outdoor time for so many months I can tell you that in the morning when I would be struggling through my exercises there were many times when I went through a lot of kleenex!

There was another thing you mentioned, being tired of "battling". My future father-in-law when I was in my callow youth told me for the first time that famous prayer: "God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference". If there is one thing PMR has taught me (other than patience!) is that it's very important to choose the battles. Some things just have to go. I used to be very interested in civic matters and attended council meetings, went on marches, joined groups, and now I know I simply cannot do that any more. I have to fight my battle for a better world in other ways which do not deplete me. Same with facing an illness. There are some things you can't change (e.g. the fact that you have an illness which requires a certain medication), some things you can (e.g. how you respond to the situation and ways you can alter your behaviour to make things go more easily), I hope you, too, can find that balance.

Best wishes. 💐

[Hiibilly in reply to HeronNS]

Very wise words indeed and of course at my best I can find my way through. You have PMR and you take this gave me some certainty now I it all seems up in the air. I will talk to my GP tomorrow. Thank you for reading all that, you are very caring I can't tell you how much I appreciate you and this site.

[HeronNS in reply to Hiibilly]

Sometimes all we need is a hug. This will have to be a virtual one: 🤗

[Hiibilly in reply to HeronNS]

Thank you I hope your knees improve best wishes and a virtual hug back. X

[Francesbarbara in reply to HeronNS]

I have always been a 'battler' and if not fighting for something, felt that I was 'giving up'. Your post has made me realise that sometimes 'giving up' is the very best thing you can do. A most comforting statement, thank you.

[Thelmarina in reply to Francesbarbara]

My next door neighbour used to say ‘let go, let God.’ There are those situations when I sit back and let it all flow over me. Stopping the battling. It is such a relief. Then I find I can remount (not sure about this image! 😅).

[Viv54 in reply to Hiibilly]

So sorry you feel so unwell , hope your GP gets things sorted for you. I had the long Journey of stress that led to PMR, didnt even know there was such a thing ! Plus chronic Arthritis ! But very slowly things are starting to get better. Spring is just around the corner ! Chin up 👍🙂

[Hiibilly in reply to Viv54]

Thank you the rain and flooding don't help, its cold and dry today to will try x

[Sophiestree]

Pre- diagnosis my calcium levels were high and over the 3 months they took to get to LVV got higher. I was told to drink 3 litres of fluid which was tough. However due to the prednisolone and my osteoporosis I was given a Zalendronic infusion, which brought the calcium right down. So now I feel it has masked the problem. However the consultant endocrinologist has arranged thyroid (i have had an underactive thyroid for over 40 years) and parathyroid scans, so I will be interested to see what they show. You need to know the cause of high calcium and need to be referred to an endocrinologist. Hope you get to the bottom of it.

[Hiibilly in reply to Sophiestree]

Thank you Sophiestree for your reply and info I will let you know how I get on.

[HeronNS in reply to Sophiestree]

Interesting. Please let us know how you get on. Parathyroid problems can contribute to bone thinning and when treated bone density improves.

[Sophiestree in reply to HeronNS]

If that happens I will be thrilled! I will certainly let you know, but am trying not to get too hopeful.

[Iamfedup]

When you say high what was the figure?

[Hiibilly]

The letter says calcium is high 2.75, my CCP, RF and ANA are normal. Other baseline blood is normal and asks for my PTH level to be checked.

[PMRpro Ambassador in reply to Hiibilly]

What is their normal range, do you know? (in brackets after the value on the report)

[Hiibilly in reply to PMRpro]

No I don't know my normal level there is no other figure on my report, it just says calcium is high 2.75. It is very frustrating, I have spent ages looking up all the abbreviations.

[PMRpro Ambassador in reply to Hiibilly]

You can always ask here - much simpler as most I don't need to look up or know exactly where to find them

[Hiibilly in reply to PMRpro]

Thank you for that 😁 it can become overwhelming better from the friendly folks on here

[Sophiestree in reply to PMRpro]

Looking at some of my blood results I believe Calcium levels are between 2.2-2.6Mine went over 3 apparently

[Sophiestree in reply to Sophiestree]

but started slightly high at 2.74,then 2.9 then 3.1

[PMRpro Ambassador in reply to Sophiestree]

It depends - 2.7 is a common upper limit but the labs can vary by up to 0.5 in their range. You always need to compare your result with the lab's own range.

What was the cause of your increase - that is really high.

[Sophiestree in reply to PMRpro]

They still don't know.... hence the nuclear parathyroid scan and thyroid and parathyroid CT this week. Apparently it was high 6 years ago according to my GPs notes... but they didn't pick up on it and so I am in the dark. Concerned it may have been the cause of my dramatic numbers going up from my Dexa scans.2010 -2.7, 2012 -2.9, 2014 -3.5, 2020 -3.9

GPs notes show high calcium in 2014 but I was not contacted so only found out during my investigations in September last year.

[PMRpro Ambassador in reply to Sophiestree]

For goodness sake - that is a catalogue of errors. I would be wanting someone to account for it

[Sophiestree in reply to PMRpro]

Yes, I know, but when you are feeling so ill (pre LVV diagnosis) you have no energy to fight, let alone realise what just happened. But I did write to my GP and ask them why I was not contacted. They didn't really give me a decent reply other than it was OK before that and a couple of years after. But surely that means something isn't right. I can only wait for the results of these new scans, but my appt with endocrinology isn't until April. That's a fair old while to wait.

[PMRpro Ambassador in reply to Sophiestree]

I know what you mean. But at worst they should have checked within a few weeks. And in 2014 the high calcium and the big change in bone density together should have rung some bells.

[Sophiestree in reply to PMRpro]

Exactly. And the GP had all that information. It's frustrating when you aren't aware at the time.

[Parami]

Hi Hiibilly

You need to get your Calcium, PTH and vitamin D levels checked from the same blood draw. The relationship between these three is important, and is something that a lot of GPs, and even endocrinologists, don't understand. If your levels are off, please look at hyperparathyroiduk.com, which has a lot of information. Hope you get sorted.

[Hiibilly in reply to Parami]

Thank you just waiting to talk to my GP now, I will make a list of things to ask. .

[HeronNS in reply to Hiibilly]

ou are probably way ahead of me, but this may be useful: americanbonehealth.org/bone...

[Hiibilly in reply to HeronNS]

That's very helpful Heron, I spoke to my GP she said it was up to the rheumatologist so I have an appointment (telephone) on Wednesday with the rheumatology nurse. Telephone appointments are ok but the GP really didn't want to discuss this with me. I have time to get some questions sorted. Thanks to all learning so much from you all it's wonderful.

[Jane185]

When I first had PMR and was on prednisone, I was told to take Ca tablets, but my Ca levels went up to 2.50. My sister had recently had a parathyroid adenoma removed so I did some checking. One of the best sites is one run by Dr Norman (parathyroidism.com) which explains so much. He has done a lot of research on his many patients and has come to many conclusions (with graphs) which agree with the UK site that it is not the amount of Ca that is the problem (if over the limit), it is the length of time it is like that - and is actually fatal in the long run (worse than high cholesterol etc). If you look at his adenoma photos, the Ca and PTH levels do not indicate the size of the adenoma. One of the things I learnt from that site is that 2.495 should be the upper limit for Ca for an adult above 60 - it is higher the younger you are - and he has a page where you can put in your age and find out where you should be (unfortunately in the American units, which you have to convert, but 10 = 2.495). Unfortunately, labs put the upper limit as 2.6 (in NZ) which is an AVERAGE over all age groups, and so not true for most of us with PMR. Since then, I have stopped taking Ca and my Ca levels have gone down, but my PTH is now at 8.0 (6 is the upper limit) and has been as high as 11.9. My recent Dexascan has shown more decrease in bone density, even though I am now down to 7 mg of pred, and eat Ca-containing foods at every meal, plus almonds for snacks. It occurred to me in a light-bulb moment - surely prednisone would affect Ca blood levels?? I have seen one article that said just thatThere are many more symptoms than they have mentioned in the UK site and not everyone has them all, which makes it hard to diagnose, but GERD (gastro reflux) is a common one they missed, and constipation/diarrhoea, also bloating. Vitamin D deficiency also often shows up, so Drs think your raised PTH is CAUSED by that, whereas the body lowers the Vit D in order to protect itself (to lower the Ca levels in the blood, I think they said). So IF you DO have an adenoma, taking Vit. D actually makes the symptoms worse.

[Hiibilly in reply to Jane185]

Thanks Jane this really is a complex issue I will have a look at Dr Norman. Take care and thanks again.

[PMRpro Ambassador in reply to Hiibilly]

That is the link I gave you at the beginning of the thread.

[Hiibilly in reply to PMRpro]

Thank you yes just gone back to your first post on this post👍