WANTED: Magical Cure

Hi everyone, 

I don't know why its taken me so long to think of googling for other people that have this condition, but here I am. 
I thought I'd introduce my history with the disease, I'd love to hear from others! I really need to get reassurance that it does get better. 



I was diagnosed with Primary Hyper Parathyroid disease just before my 11th birthday. 
after a lot of faffing around with doctors being unsure of what to do, I had surgery a few years later. 

After every scan available being unsuccessful, they decided to 'wing it' and of course the surgery failed as you'd imagine. 

I was put on Cinacalcet and have been on the drug for nearly 10 years now. 
this has kept my calcium within normal range of 2.5 until about a year ago, it just decides to do whatever it wants now (2.7-3.0). 

I have the usual symptoms of high calcium - kidney stones requiring surgery being the most annoying symptom. 

5 days ago, I had surgery at QE hospital in Birmingham, by Dr Ready (one of the best surgeons in the UK apparently) He has a 95% success rate and I would highly recommend his care to anyone. 

After something like 4 hours of surgery, he couldn't find what he was looking for. 
As you can imagine, I'm devastated. If anyone was going to find it, it would have been him. 

I am now back on Cinacalcet, a higher dose than before, whilst also recovering from surgery. 
Dr Ready also removed my Thymus which is proving the most painful part. 
Whilst I was recovering in hospital, they were considering further surgery to remove the thyroid (not exactly sure what this would have achieved) but eventually decided not to. My doctors and surgeons are really stuck now.

Does anyone have any experience with such bad luck? is there a magical scan I should be looking into? do I need to make a deal with the devil?! 

Now, at the wise old age of 23 with CA levels at an all time high, I'm feeling pretty fed up and need a magical cure asap please. 
I'd like to get on with life. 

suggestions, advice, moral support, stories or perhaps even a slap to snap me out of self pity city, are all welcome and appreciated.

Alice  

Hi Alice and welcome to the forum,

Quite a story you have, just wondering, as you were diagnosed at such a young age if any of the docs have thought about Familial Isolated Hyperparathyroidism which is a genetic form of the disease. It is claimed that there are no symptoms with this but we know there can be, we did have members with this but I'm not sure they look in on the forum these days.

Another possibility is you have a parathyroid gland in an odd place, they aren't always where they should be so the surgeon may have missed an adenoma if it was lurking elsewhere, we had at least one member with an adenoma in the chest.

A few members have consulted and been treated by Fausto Palazzo in London, he has great success with difficult cases so may possibly be able to help you.

You could have a look through the forum posts for members stories, you may find some useful info, I'm sorry I can't offer much advice other than consulting Mr F P. and possibly looking into the genetic side of things.

Hopefully someone else will be along to add their thoughts, keep us posted.

Nelly

Hello Alice

So sorry to hear your story of an unsuccessful surgery, but glad you have found us here for help and support.

As Nelly says, Mr Fausto Palazzo at the Hammersmith Hospital did over 200 parathyroid surgeries in 2014 (I don't have 2015 figures to hand) and is an acknowledged expert in re-do surgery after failed first operations.

He removed my 3 hyperplastic PTH glands in Dec 2014 and I have felt enormously better as a result of his work. Although a possible enlarged PTH gland did show up on ultrasound, nothing at all showed up on the nuclear scan, but he was happy to go ahead with the surgery anyway as my biochemistry indicated a PTH problem.

Your own biochemistry also appears to indicate a PTH problem. I am not medically trained and can only offer my layman's opinion, but in your shoes I would invest £250 in a private consultation with Mr Palazzo at the Princess Grace Hospital (opposite Baker Street tube in London). You can usually get an appointment with him privately within 2-3 weeks. If he thinks he can help you, and you do not have medical insurance, then he will transfer you over to his NHS list (he did with me) and proceed from there. He and his team are well practised in finding hidden PTH tumours and I am sure he will be able to help you.

His private secretary is extremely helpful: Sophie on 020 7486 1234. You could ask her if you could send her an email for Mr Palazzo to see detailing your case (just as you have described it here). He is bound to know your Birmingham doctor, I would think, as they are all members of the British Assoc of Endocrine & Thyroid Surgeons. It could even be useful for Mr Palazzo to talk to him.

If you will excuse me being a bit direct here, I think you are too young to have this drag on for too much longer. The high calcium is already causing you some problems, so if it is a PTH issue then it would be best to be seen by a reputed expert as soon as possible, and in my view Mr Palazzo is one. 

Please ask any further questions of us that you might need to. Nelly and Edwin have huge experience of thyroid, PTH and associated general health issues.

And let us know what you decide to do next.

Love from Tigerlily x