Thyroid UK

Hypoparathyroidism - Advice Needed

I am a 29 year old female. I had a hemithyroidectomy in Feb 2014 to remove a parathyroid cyst. I was diagnosed with hypothyroidism in June 2014 and started on thyroxine which was eventually increased to 100mcg.

I have not been well since the surgery with increasing systems, mainly pain in the bones and lethargy amongst others.

I continually went to my GP who pretty much ignored me, but eventually referred me to rheumatology. They diagnosed me with fibromyalgia and I was tried on all sorts of things for the pain (anti-depressents, anti seizure meds etc which are usually used for these things). Nothing worked so I was referred back to rheumatology even though I was convinced it was an endo problem.

The registrar at the hospital was quite sympathetic and did loads of tests. They eventually changed the diagnosis to hypermobility with pain syndrome. I did manage to see an endo but they were a diabetes specialist and said nothing was wrong.

As a last resort I used what little money I have to see a private endo. He has been excellent, although things haven't worked out yet. I was wondering if any one had any ideas whether my endo is on the right track.

He did say that had my GP etc listened to me in the first place treatment could have been started years ago.

He diagnosed me with hypoPARAthyroidism. I was started on calcichew and calcitrol (calcium and vit D) and my calcium levels have continued to drop since starting the medication and I am having hypocalcemia symptoms. I have low PTH, low/normal calcium and low phosphate (strange as if calcium is low, phosphate should be high).

Tests were as follows:

Calcium 2.08-2.65 (New consultant is aiming for 2.4)

10/08 - 2.31 - before started medication

22/09 - 2.18 - after started medication

6/10 - 2.15

20/10 - 2.11

PTH - 1.48-7.63

Feb 2017 - 2.12

23/9 - 0.85

7/10 - 0.74

20/10 - 1.17

Phosphate - 0.8-1.5

March 15 - 0.74

June 16 - 0.71

Feb 17 - 0.65

Sep 17 - 0.73

I thought possibly of adding magnesium to my daily vitamin regime, as I read this sometimes need to be corrected if low before calcium/PTH will correct itself.

Other vitamins I take are B12 (1000mcg), Vit C, multivitamin & mineral, cod liver oil.

Any thoughts or advice would be greatly appreciated.

7 Replies
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iirc, bantam12 is knowledgeable about all things parathyroid tho' more specialised in hyperparathyroidism.

You'll have seen this site about the parathyroids and their articles on hypoparathyroidism.

parathyroid.com/search?q=hy...

This one might be particularly relevant to you? (Hypoparathyroidism following thyroid/parathyroid surgery)

parathyroid.com/low-calcium...

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brightsideoflife88 ,

You are hypoparathyroid because PTH is below range. PTH regulates calcium, vitD and phosphate. There isn't currently a replacement PTH so it is necessary to supplement and balance calcium, vitD and phospate.

You aren't hypocalcaemic but calcium is low in range. You need to increase dose to raise calcium to 2.4 your doctor said is desirable.

What is your vitamin D? Vitamin D deficiency can cause hypophosphataemia.

patient.info/doctor/hypopho...

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My vit D after being on new medication was 90.3 nmol/l. Which is good I believe?

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brightsideoflife88,

90.3 is good. I think your doctor should investigate hypophosphataemia.

Reply

Thanks. I would agree. Could hypophosphataemia be causing my calcium levels to decrease even with taking calcichew's?

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hypophosphataemia,

I don't think so, I think you need more calcichew, but I know very little about it. The link I posted may have more information.

Reply

Ok. Thank you.

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