High calcium levels

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Has anyone has high calcium levels in blood? And what was the outcome? I have had severe headaches daily for 3 months anxiety and back pain/neck pain so had bloods now need to get further tests. Am freaking out am a worrier

Are you in London at all? It's taking ages here to get dates for scans and endo appointment. Hope you heal quickly and all the symptoms go away.

@HasB I am early 60's and fit and well otherwise. In September I was admitted as an emergency to hospital as my calcium had risen above 3 and my magnesium was low. I.V fluids helped to lower my calcium. My neck scan was an ultrasound.I have done a lot of my own research and there are 2 very helpful Facebook groups where everyone (mainly females) are going through various stages of hypercalcaemia and hyperparathyroidism.

I am feeling worse by the day and the only cure (in my opinion) is removal of the adenoma.
What area do you live in? Many waiting lists are long to see an endocrinology team let alone a surgeon.
Please keep us posted.x

@HasB yes I am south west London. I am similar age to you but there was never a mention of medication to lower calcium for me, was told from the start that due to being young and otherwise healthy, removal was the only way forward, especially before it started to effect anything else.

edited to add, all my scans and tests were done within about 6 weeks, it was the wait for surgery that has taken so long

I've got my first endo appointment at uclh after mid Jan and referral was beginning of October. That's over 3 months! Did my own Dexa bone scan which shows Osteopenia and kidney scan was clear. No news of the NHS scan referrals yet! I'm in the FB hyperparathyroidism group

Sounds like you have been lucky to have all the tests done quickly. Did you get high dose vit D? Which hospital? What symptoms did you have before? Did you have any bone or kidney damage?

I saw a private endo and he picked me up via the nhs, he arranged all of my tests before my first nhs consultation with him which expedited things substantially.

high dose vitamin d can make you feel worse, just as a warning. I couldn’t tolerate it (and it didn’t bring my levels up anyway). Your body lowers the vitamin d as a protective mechanism.

Hello, I am also in this boat. Diagnose a couple of years ago. Had dexa scan and kidney ultrasound and both were cleat. I refused surgery as I was recovering from ovary removal. I'mnow wondering whether I should have the surgery as I feel this is going to be hanging over me otherwise.

That's really good - how are they abke to pick up patients via NHS? Were you in the same area? Yes I've noticed that with the high dose vit D

@nowtygaffer it won’t heal itself. Ask to be re referred for surgery.

@HasB id already had my referral and I chose a doctor that worked at my local nhs hospital when I went private. He’s been my doctor on the nhs ever since and taken good care of me.

Yes I think I need to face up to it and get the op. I'm just a bit scared of another operation...

@nowtygaffer i know what you mean. Nobody enjoys surgery but ultimately if you don’t do it then you’ll end up dead. It takes a long time to kill you but in the end it’ll raise your blood pressure and put you at risk of a stroke or cardiac arrest. And before that you’ll have osteoporosis and kidney problems. If you were 85 I’d say maybe don’t bother, but if you’re under 60 you need to x

Yes you are right! I am just being a big wimp. The endocrinologist said I should have the surgery. I just put it off because I'd just had ovaries removed because of a big cyst. Had a horrible time in hospital but I know you are right. And I can’t keep having it hanging over me...

@nowtygaffer if it helps at all, I’d never had surgery at all and was so scared of having this done but the recovery seems pretty smooth so far. One night in hospital and that was mainly so they could take bloods at 6 and 12 hours post surgery, I’ve been home nearly a week and feeling fine, neck still a little tight with movement and tender but I wouldn’t call it painful. I’m sure it’s nothing in comparison to what you’ve already been through.

@HasB not high dose Vit D but was told to keep taking some throughout. My only symptoms were extreme tiredness, aching joints, IBS like symptoms and low mood. Was having other tests when this was discovered. Luckily no kidney or bone damage but they will recheck my bone profile with bloods next week apparently

Let us know how you get on.

@nowtygaffer ive had surgery a few times, bigger ops pain wise than this. The worst part was having to sleep upright after surgery to help with swelling but that was only night 1 and in the hospital so had a bed built for it.

recovery was pretty fast tbh, I’m a few years down the road now and my last lot of bloods showed my PTH is creeping back up. I’ve recently been suffering IBS symptoms and I’m wondering if I have another rogue gland so we will see what the next round of bloods say. Ultimately though I almost hope it is that causing it because I know the cure, and despite never wanting another operation (who wants to be cut into?), if I had to for this I would do it again no trouble.

@OchAyeTheN00 today I'm feeling so shattered its like I'm gradually becoming bedridden! It's scary what is happening to me!

@HasB very common, you only need to ask on the fb group what the fatigue is like to hear similar stories. Its really sad.

@OchAyeTheN00 the high level of anxiety, extreme muscle pulling pain, bone pain, nausea, abdominal pain, back pain, palpitations, lack of appetite, frequent urination, light headed plus dizziness, brain fog and of course extreme fatigue. I can't cope like this!

I remember being so desperate at points I wanted to cut my own neck open and get the fucker out myself.

The doctor needs to check the level of PTH in a blood test, and also test calcium levels in your urine. If both of these tests show high levels, then you will probably be referred for a scan of your neck and/or to an endocrinologist. Ultimately you may need surgery to remove one/more than one (we can have up to six) of your parathyroid glands if your calcium and PTH levels are very high and your symptoms severe.

But it may not be hyperparathyroidism at all. As others have said, there could be other reasons for your high calcium levels. I'd try not to worry as your anxiety could be triggering or making your headaches worse.

I feel like that!

@HundredMilesAnHour 99% of cases are due to hyperPARAthyroidism which isn’t scary and preferable over the other causes.

Why @OchAyeTheN00 are you stressing PARA? Perhaps you're mixing me up with another poster who thought the discussion was about the thyroid rather than parathyroids. Hypercalcemia can be caused by a number of conditions from dehydration to cancer. The OP hasn't mentioned having had her PTH levels tested nor the level of calcium in her urine (yet) and even endologists wouldn't jump to the conclusion that it's primary hyperparathyroidism before testing those.

@HundredMilesAnHour because it’s the most likely scenario. Dehydration I think she’d know about! And more likely of ill etc. also cancer is extremely unlikely. My endocrinologist said to me that if I had high calcium caused by cancer then I’d know I had cancer, and would likely be in hospital. It’s not a presenting symptom.

you’re telling the OP not to panic because it might not be hyperpara but then throwing around words like cancer. Hyperpara is far far more likely, like I said a 99% possibility. And also benign again in 99% of cases. The only other thing that my endo was interested in was FHH, but you wouldn’t have symptoms and unlikely to have embarked PTH.

I have advised the OP to get further bloods which is the correct course of action (and will likely confirm hyperpara!)