Parathyroid and gut issues

[Philbs1980]

Has anyone looked into potential parathyroid issues as a cause for your gut issues?

[Viklou]

Yes

[Philbs1980 in reply to Viklou]

And?

[Viklou in reply to Philbs1980]

I've recently been diagnosed with primary hyperparathyroidism. I have been to see an Endocrin surgeon, privately, who is prepared, based on my bloods and scan results to operate on the NHS, subject to GP referral. The Endocrinologist I'm under, would rather wait and monitor over time as he thinks my symptoms aren't related to hyperparathyroidism, I thought how does he know that, hense going straight to a surgeon privately as I didn't want to wait for end stage organ damage.

So to cut a long story short, I went to see GP yesterday with a list of issues I'm having and on speaking to them about it, he doesn't think it will benefit me right now either. He did say as my calcium isn't that high it shouldn't be affecting me. We actually had quite a good chat about it. He did say he was happy to refer me but how would I feel if I came out the other side with little or no improvement in my symptoms. I said at least it would be one less thing contributing to an unfortunate circumstance I find myself in right now and one less thing to attribute to my IBS. The GP sent me for some more bloodwork this morning at the hospital including upto date PTH and calcium blood tests. I'm due to go back and see him next Thursday and in the meantime I'm thinking about what he said. I'll let you know what happens next week. Personally I think my symptoms are more than the Hyperparathyroidism but who knows

[Philbs1980 in reply to Viklou]

Thank you for the information. What Symptoms do you currently have?

[Viklou in reply to Philbs1980]

Diarrhoea, nausea, weight loss, extreme fatigue and a gob full of ulcers and generally feeling rubbish. I suppose like half the country at the minute except some of that list doesn't go away

[Philbs1980 in reply to Viklou]

Oh wow that sounds more like Colitis. Have you been checked for this?

[Viklou in reply to Philbs1980]

Yes I have. I had a scope May 2018 and my colon was ok or at least I think it was May lol can't remember to be honest. Had small bowel MRI too around the same time. Things are getting worse and my stool sample is never normal. Bloods always fine. I think whatever this is will come to a head soon. I deferred my GI appointment until July next year to get this parathyroid problem investigated first, as if that was causing issues relating to my bowel I could be sorted but the Endocrinologist doesn't think it will help. For now it's IBS and it will be seen as that until something else happens.

[Hidden]

No, I've never heard of it. I'm going to google it now.

[Viklou in reply to Hidden]

Basically there are 4 little glands the size of a grain of rice, that sit on the back of your thyroid gland in your neck. The sole purpose of these glands is to regulate calcium in your body. If one of these little glands isn't working properly it can cause your calcium levels and parathyroid levels to rise. The cause of this malfunction is usually a benign adenoma on one or more of these glands. The only cure is surgery.

The raised calcium levels could be due to 3 types of hyperparathyroidism. Primary, secondary or tertiary. Basically Primary is soley the reason for your high calcium level is usually an adenoma on the gland that needs surgery. Secondary is basically where your parathyroid is compensating by producing more hormone to get round another issue such as low calcium, low vitamin d etc. This can be rectified by adjusting low levels with supplements and parathyroid levels should stabilise. Tertiary is usually down to kidney failure or cancer.

For more information on this subject you can go on parathyroid.com

This will tell you anything you need to know. It's an American website but there is a group in the uk dedicated to parathyroid problems called Parathyroid UK. They're a great group who are extremely helpful if you have or suspect you have this disease.

I must add if you feel you need a test for this as your calcium is raised from a particular blood test you've had, it's important to test PTH, calcium and vit D at the same time, otherwise you don't know how one is affecting the other.

The main IBS symptoms with this disease are constipation, bloating nausea and pain. It doesn't usually cause diarrhoea, weight loss or vomiting. However if your calcium goes over 3 this could cause severe headaches, palpitations, heart problems and possible stroke. If you feel particularly unwell as your calcium is very high then you need to go to A&E for intravenous fluids and something to reduce the calcium levels

[Hidden in reply to Viklou]

Thank you so much for the information, it's amazing what I've learnt from this site.🙏