Parathyroid surgery the aftermath

[Chinamug]

I would be grateful for any thoughts on the following.

I was diagnosed with hyperparathyroidism in 2018 although it is likely I had the condition for sometime before that. In late 2019 an adanoma was removed. All well until 3 to 5 months later when I started to feel sick, pains in my chest, lost my appetite- l just couldn't eat and lost weight plus my bones hurt This all happened in the middle of 2020 lockdown so accessing my endocrinologist my gp practice and/or the hospital. was nigh on impossible.

Eventually the hospital decided I should have further parathyroid surgery which look place at the end of October last year. This time a parathroid was removed. By the time I had the second surgery most of the first post surgery symptoms had subsided but I went ahead anyway.

I am now experiencing the same post surgery symptoms as last time. It is really debilitating but I am trying to stay positive hoping the symptoms will subside like last time.

Any suggestions as to what might be causing all of this?

Thanks

[RedApple Administrator]

Chinamug, despite the similarity in the name, parathyroid has nothing to do with the thyroid. For that reason, you're unlikely to get a great deal of support from the members here.

Unfortunately, there doesn't seem to be a support community for parathyroid problems here on Health Unlocked.

This site parathyroiduk.org/get-invol... mentions support groups on FaceBook

[bantam12]

What are your calcium and pth levels doing ? you may have familial hpth which is a genetic problem and can involve all 4 glands, hopefully you have a very experienced parathyroid Endo and surgeon !

[AS14]

I have hypoparathyroidism, lost my parathyroids due to a thyroidectomy. I was very symptomatic and my gp and local hospital had no idea how to treat me .

I found parathyroiduk.org and they gave me a list of recommended doctors, its an endocrinologist who specialises in calcium disorders that you need.

Once I had the doctors name I asked my gp to refer me .

I am doing pretty good in terms of parathyroid, well medicated and pay careful attention to calcium intake but thankfully symptoms tend be mild and not a issue.

A word of caution though dont presume a doctor who specialises in parathyroid will always be very knowledgable with thyroid disease.

My doctor is an example of this, hes awful with thyroid.

Parathyroid and thyroid are completely different to each other, parathyroid simply means next to thyroid.

Im afraid I dont know what the symptoms of hyperparathyroidism are but I can tell you that hypo causes some unpleasant symptoms, scary sometimes and they tend to be very odd.

Parathyroids control calcium, calcium plays a huge role in nerve and muscle function, and I can certainly feel symptoms in those areas so its reasonable to assume hyper would cause problems in these areas too.

You’ll get great help at parathyroid uk.

[SlowDragon Administrator]

You need calcium, vitamin D and parathyroid levels tested together

When you get results you can put them in this app

calciumpro.com

Download for £2-3

App developed by Norman Centre - here’s main parathyroid website run by them

parathyroid.com

Have you had thyroid levels tested to check thyroid wasn’t damaged

[HashiFedUp]

My mum had pth problems after decades on Lithium. Her calcium levels were off and that’s how she was diagnosed. How are your calcium levels? Have you been on any medication or have any other conditions which might trigger calcium issues?

[Fruitandnutcase]

You’ll need to have your bones checked out for osteoporosis - a DEXA scan if you haven’t already had one, parathyroid problems are just one of the things that can cause secondary osteoporosis.You might also be able to get advice on parathyroid problems from the Royal Osteoporosis Society, there is a Healthunlocked site called Bone Health you could look up and you’ll get a link to the ROS helpline and email address.

[meme]

Most people have 4 parathyroids but some have more. They are usually in the neck but can be in almost any part of the upper body. Each one needs to be looked at during surgery for abnormal growth and removed. Unfortunately people often have to have surgery more than once for parathyroid. Do get you D, calcium and parathyroid blood work done again , all in the same blood sample.