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I'm back too!

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I'm back too!

Post by Tigerlily on Mon Jun 22, 2015 11:20 am

Hi Everyone

So sorry to have been away so long - been on holiday and continuously dealing with medical appointments before going and on coming back.

Sorry too to hear how things are going for other members, but hope time will bring improvements.

You may recall that I had 3 hyperplastic PTH glands removed by FP at the Hammersmith in early December 2014. As the glands were hyperplastic I asked my GP to refer me for gene testing to rule out MENs and HPT Jaw Tumour Syndrome (as I had a swollen cheek and jaw pain that had got sidelined with the PTH surgery and had not been addressed - I had hoped they would reolve after surgery, but they didn't).

The geneticist called in the slides of my PTH glands from the Hammersmith, had them re-examined, and then coolly wrote back to me to say that not only had they not been hyperplastic, but that I had not had primary HPT in the first place - the implication appearing to be that I had had unnecessary surgery.

With this letter on my medical records, I could see I would get no-where at a clinic appointment for my swollen jaw. I could see myself going in and telling them that I had just had 3 hyperplastic glands removed, and them saying "well, that's not what it says here" !!

So I asked my surgeon to confirm to me exactly what it was that he had seen at surgery, and he wrote back the most diplomatic letter stating that it was clearly a case of 3-gland hyperplasia and since they do over 230 PTH-ectomies a year their path lab should be expert by now at spotting the pathology. He copied the letter to the geneticist, and her other colleagues who had been trying to tell me that I had had secondary HPT due to Vit D deficiency.

So, now I was left with the swollen face/jaw. I had an MRI of the area last week and am waiting for the radiology report. I did get the MRI pictures on disc which I have looked at myself and there does seem to be an obviously enlarged area of bone in the relevant area.

If anyone has experience of reading MRI pix and would like to offer an opinion on mine , please let me know, as I can send a .jpg to an email address. I'll try and put the photo sheet in the ether somewhere and then post a link to it, as I'm not sure how to add attachments to forum posts.

So, I'll be joining Amanda and Jasmine over a cup of that crap coffee in the Limboland Cafe, if I don't hearing the results of the MRI very soon.

Please don't let the forum fail, Everyone - keep popping back. Forums do go through quiet periods, for whatever reason, but I've had so much help and support from this one and Mr/s Admin that I wouldn't like it to disappear.

Love to All from Tigerlily xxxx

Tigerlily

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Re: I'm back too!

Post by Amanda Lynne on Mon Jun 22, 2015 12:08 pm

Hi Tigerlily
What the hell is going on with the geneticist ????? How can anyone have a hope of getting well if two specialists have such completely opposite opinions.

I'm glad FP put her/him in their place, it must have been awful for you stuck in between like that.

I hope you get some answers to the swelling from the MRI pictures and get that resolved as soon as possible.

Love Amanda xxxx
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Re: I'm back too!

Post by Tigerlily on Mon Jun 22, 2015 12:15 pm

Thanks for your reply, Amanda - I just couldn't believe it had happened that way.

I'm just working up to writing to the geneticist to ensure that she doesn't cancel the July appointment I have with her!

Hope you are moving forward yourself?  The dry eye problem could be connected with the low thyroid as I get them too. There's always Sjorgen's Syndrome (how do you spell it?) as a possibility, as I gather it's also an autoimmune disorder.

Will let you know what the MRI reveals.

Love from Tigerlily xxxx

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Re: I'm back too!

Post by Hadleigh on Mon Jun 22, 2015 1:07 pm

Welcome back Tigerlily cheers

Blimey what a carry on, glad to hear FP has confirmed what was done was right, not that we would expect any mistake from such an experienced surgeon.

No idea how to read MRI's but hope you get some answers from it.

It is so disappointing when we cure one thing only to have something else take its place, guess it is part of the joys of ageing Rolling Eyes not.

Do keep us posted Tigerlily, good luck.

Nelly xx
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Re: I'm back too!

Post by keir on Mon Jun 22, 2015 9:24 pm

Hope everything goes OK. Just don't understand how 2 experts can come up with completely opposing opinions. How does that get resolved? ??

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Re: I'm back too!

Post by Admin on Mon Jun 22, 2015 10:12 pm

Unfortunately, it is not unusual.

I get the impression from our member's feedback that surgeons seem to have a better understanding of Hyperparathyroidism than many Endos.

Most Endos are fairly clueless about Thyroid problems as well, because their main focus seems to be on Diabetes.

It's down to the patient to keep pushing, rather than expecting the professionals to have all the answers.

Edwin
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Re: I'm back too!

Post by Little Audrey on Tue Jun 23, 2015 1:55 am

Tigerlily, good to see you back!!    I agree with you that this forum was a lifesaver for so many of us, we need to keep it going!!!     Nelly and Edwin were so good to get this going for us, we can't let it die out!

And what a shame about your idiot geneticist!   It actually doesn't surprise me.   Edwin is right, parathyroid surgeons know a whole lot more about HPT than other doctors!    I know my endo sure didn't have a clue.   She knew enough to check my PTH, but then had no idea how to diagnose the disease once we had the results!     Hopefully, your geneticist will be convinced when she receives that letter!

Sorry I can't help you with the MRI either.  Crying or Very sad   I wish I could.    Are you in a lot of pain from the swollen jaw?   That sounds awful!

Audrey

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Re: I'm back too!

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