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(14 Posts)
BestIsWest Sat 06-Oct-12 20:40:17

Any one have any experience of this? It looks as though I have it but I'm waiting to see a specialist to find out if it's primary or secondary. Very much hoping it's primary though the doctor I saw yesterday was a bit non commital (it's not his field).

WorkingItOutAsIGo Sun 07-Oct-12 07:31:45

Think I had this though not sure what primary/secondary means? This is where your calcium levels are too high, right?

I had it diagnosed for about three years before I had them courage to have my parathyroid gland removed, which was quite straightforward surgery, and have had no problems since.

What do you want to know?

MrsMiniversCharlady Sun 07-Oct-12 09:44:39

I have this. What blood tests have you had done so far? The doctor you saw yesterday sounds a bit clueless as the difference between primary and secondary is very clear cut and easy to work out from blood tests. In primary hyperparathryoidism, which is by far the most likely cause, you have HIGH CALCIUM and HIGH OR NORMAL PARATHYROID HORMONE (PTH) LEVELS. In secondary, you have LOW CALCIUM and HIGH PTH.

Primary hyperparathyroidism is almost always caused by a benign tumour (adenoma) on one of your parathyroid glands, which causes it to make too much PTH. Occasionally it can be caused by a genetic condition - this is very rare. I have a very unusual history as I have a genetic condition and also have a parathyroid adenoma!

The recommended treatment if you do have a parathyroid adenoma is to have surgery to remove it. I was diagnosed 8 years ago and have had one lot of surgery, but unfortunately they couldn't find the tumour - this is rare though and complicated by my genetic condition. I now also have hyperthyroidism (probably unrelated) which makes it even more complicated and difficult to locate where the tumour is. Your condition is likely to be much more straightforward.

I would recommend this website for more information - it's American, so some of it isn't relevant, but it's good for background reading.

fluffycauliflower Sun 07-Oct-12 11:43:03

Hello can I join this thread? Mrs. M., thanks for that link. I think I may have hyperparathroidism. I'm wondering if my GP will take me seriously. He has recently referred me to a cardiologist as my ecg is abnormal and I have been having palptations. For years I have tended to feel a bit lightheaded in the winter (lack of vitamin D?). I worry a lot about my memory and concentration. I did a hair analysis test a couple of years ago which indicated that I had excess calcium in my body, I never knew what the implications of this were. I gave up drinking milk about 4 years ago and felt a lot less fatigued - is that because I was intaking less calcium? I'm 40 and I do a lot of exercise - to try to counter the light headed ness. Any advice?

MrsMiniversCharlady Sun 07-Oct-12 11:57:08

Hi fluffy. If you decrease your intake of calcium and you do have hyperparathyroidism then your body will simply release the extra calcium that it 'thinks' it needs (due to the high PTH) from your bones. So I don't think reducing your intake of calcium is likely to be responsible for you feeling better. One of the effects of hyperparathyroidism is that you are prone to osteoporosis, so it is a good idea to get tested if you think there is a possibility that you have hyperparathryoidism (it might be a good idea to take a calcium supplement anyway if your diet might be deficient).

Have you ever had your thyroid levels checked? A common symptom of hyperthryroidism is heart arrhythmias, and it can have lots of vague symptoms such as fatigue, hair loss, dry skin etc so I would think a thyroid test would be a good idea too.

fluffycauliflower Sun 07-Oct-12 18:18:44

Hi Mrs. M., I had a blood test recently and the doctor said my thyroid was ok, I've no idea what the results were. I should have checked out my bones after I slipped over and broke my leg 6 years ago - it seemed such a simple fall, and to break my leg was a bit strange. The main symptom I have is light headed ness. Does anyone else have this?

BestIsWest Sun 07-Oct-12 18:49:42

Wow loads of answers!. The doctor I saw was an Orthopaedic Consultant as I have broken lots of bones over the last few years and have osteopenia. He tested my blood and my PTH is through the roof (he did say what it was but I can't remember - does 167 sound right?). Calcium is 2.66 which is just a bit higher than normal and vit D was 8 (30 is low). I think the low vitamin D has confused him but reading that website it seems that if you have Primary hyperparathyroid then the body rejects vitamin D.

That website! My god I have nearly all of those symptoms - have been to the GPs recently with a long list, virtually all of which are on that website. Joint and muscle pains, palpitations, indigestion symptoms, tiredness, headaches, dry eyes, not to mention brain fog, osteopenia, thirst and constant weeing, not sleeping not to mention the fractures.

On the blood test results was written "Consistent with Primary hyperparathyroid" but when I asked about this he was a bit vague. He did say I'm likely to have had this condition for years - I can't believe the number of times I've been to the doctors with these symptoms.

My thyroid is ok.

So now I am convinced it is the primary type what are my next moves? Wait and see who he refers me to? Go back to my GP and ask them?

BestIsWest Sun 07-Oct-12 19:00:20

Also found this which mentions weight gain because of the impact on phosphates which aid Carbohydrate digestion. I have really struggled with my weight for the last 10 years.

MrsMiniversCharlady Sun 07-Oct-12 19:15:12

I would go back to your GP to make sure the ball is rolling. You need to be referred to an endocrinologist and as you're so symptomatic I would be pushing to have the affected gland surgically removed. You will probably have a sestamibi scan (an x-ray of your neck using a radioactive dye) and possibly an ultrasound as well to locate the gland. Then referred for surgery. If you're anywhere near Cambridge I would recommend Addenbrookes above any of the other hospitals in the area. They have a lot of expertise in this area.

Yes, I think weight can be a symptom - certainly when pregnant it can cause growth problems in the fetus (although my last baby was nearly 11lb - if it did slow his growth down I'm bloody glad it did grin)

Strangely, I have never had any symptoms at all - although I do wonder whether I will different when they find the pesky gland and remove it hmm

I would recommend that while you're waiting for a referral that you get a good vitamin d supplement.

BestIsWest Sun 07-Oct-12 19:26:54

Thank you - I'm in Wales. I will go back to my GP then - she will be pleased to have a diagnosis I think as she's been racking her brains about me (I'm a new patient to her).
Blimey, an 11 pounder - I had a 10 lb 10 one but that was due to gestational diabetes.

I have been prescribed vit D.

MrsMiniversCharlady Sun 07-Oct-12 20:10:43

Good luck. Let us know how you get on.

mercibucket Sun 07-Oct-12 20:37:03

You need to watch your calcium levels if you take vit d!! That hyperparathyroid website has more info

mercibucket Sun 07-Oct-12 20:37:03

You need to watch your calcium levels if you take vit d!! That hyperparathyroid website has more info

MrsMiniversCharlady Sun 07-Oct-12 21:16:01

Vitamin D supps are only a problem if your calcium is already very high. Mine are moderately high and I have been recommended them by my endocrinologist (wish she'd prescribe them sad)

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