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Room for one more on the FHH chair?

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Room for one more on the FHH chair?

Post by Lucycatnaps on Fri May 23, 2014 12:24 am

Hi everyone,
Well we have just got back home after my appointment today with Mr P.  He was lovely and very thorough but he commented that my 24 hr urine calcium level was low, borderline for a possibility of having FHH.  He hasn't ruled out PHPT but will write to my endo asking for further testing over the next few months.   Ideally he would like a Vit D test and mentioned taking high doses of D to check my calcium absorbtion.  At the moment he would like a more firm diagnosis.  He felt the lump on my neck and does not think it is an adenoma and has advised me to have a fine needle biopsy.  So it is back to watch and wait it seems, I feel pretty miserable to say the least but that is me being negative so I am told.  I will see orals next week so will ask to have this neck lump re-evalued again.
Sue
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Re: Room for one more on the FHH chair?

Post by Rosieb on Fri May 23, 2014 12:40 am

hi Lucycatnaps here is what I hope is a feelgood photo just for you

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Re: Room for one more on the FHH chair?

Post by Kathi209 on Fri May 23, 2014 3:09 am

Oh my gosh its a epidemic, and you know FHH is very rare, but join the club I think I am going down that road to. Good luck to us all.

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Re: Room for one more on the FHH chair?

Post by Lucycatnaps on Fri May 23, 2014 8:54 am

Awww thanks for the lovely pic Rosieb.  I've not slept much, my feet have been really aching most of the night.  Mr P felt that my endo should have discussed the urine test with me, ( he never mentioned it) and that we had a wasted journey and expense. This made for an interesting drive home to say the least, my husband feels they know what they are doing and I should just accept it and not get so miserable.  He really doesn't understand how rotten this is making me feel.  
Sue
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Re: Room for one more on the FHH chair?

Post by Little Audrey on Fri May 23, 2014 11:41 am

Sorry your appointment did not go as you had wished, Sue, but I would like to remind you that I had 2 urine calcium tests, and they were both normal. My vitamin D was low, and I too had been prescribed massive doses of vitamin D to raise that level. It didn't work. My vitamin D level did rise, and gradually so did my calcium. I had read Dr. Norman's website, and I was aware that many doctors prescribed large doses of vitamin D for their HPT patients. After a few months, I told my doctors I did not want to take the vitamin D any longer. Looks like I was right in thinking they were making a big mistake with this, as I did have those 2 tumors removed in November!

By the way, GREAT picture!! I too am a cat person. I've got 1 lying on either side of me at this very moment while I type.  Smile  Beautiful, little creatures, aren't they?

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Re: Room for one more on the FHH chair?

Post by Brigitte0 on Fri May 23, 2014 12:05 pm

Oh Sue, don't get so disheartened because everyone here on the forum does understand and sympathise with you. Some may even be able to help: I'm not sure I can offer any advice here, though I can point out that my Endo whom I saw on Wednesday, did say there was always the case to look into FHH with low Vit D levels but that he didn't follow that way of thinking. If I lived nearer to you, I'd be round to make you a nice cup of tea (or glass of wine if available) and give you a hug.

I also understand the husband way of thinking, since I've had one of them myself through various health problems over the last 25 years. Mind you, he can vary from the "They know what they're doing and I don't get why you're so miserable" to the "They're all quacks and don't know what they're doing"!! Neither of which is very helpful...

Take care of yourself and consider yourself virtually hugged  Smile 

Love
Brigitte xx
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Re: Room for one more on the FHH chair?

Post by Lucycatnaps on Fri May 23, 2014 8:19 pm

Thank you everyone and BrigitteO,
Am picking myself up, dusting myself off  and back to start all over again.....but I could not do it without all your support and kind words, they really mean a lot.  The hugs were gratefully received!  I guess I join the queue for the long way round but am not going to let it get me down, well maybe just a little, you all know how it goes.  I do not see the endo again until mid July but I may go and see my GP nearer the time and ask if I can do another 24hr urine.  I will probably get my next lot of bloods done at the hospital rather than GP surgery, the downside of that is you can't get a print off,  but the PTH may be more accurate than the last one that was kicking around for a while before being tested.  Audrey I know how much of a struggle you went through to be finally treated and that you are getting there slowly but surely.
Hope everyone sees some sun this long weekend!
Hugs back and thanks,
Sue
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Re: Room for one more on the FHH chair?

Post by lozza on Fri May 23, 2014 8:41 pm

Hi Sue,

had the same conversation today at endo, must ne a national policy, keep us waiting...

best wishes

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Re: Room for one more on the FHH chair?

Post by Jasmine2 on Fri May 23, 2014 9:00 pm

Hi Sue

I can understand you feeling despondent, but don't be......I'm feeling a bit frustrated with Mr Palazzo myself at the moment as well because, like you, he is keen to "tighten up" my diagnosis, even though it looks pretty clear cut to me.  He wants to dot the i's and cross the t's to be certain of the diagnosis and he's in no hurry to do so, preferring to take his time and get it right, by going through a process of trial and elimination.  In the meantime, we're left in this limbo of waiting and hoping.......

I don't think you've had a wasted journey and expense as you've had a consultation with the top man who is now going to be guiding and advising your endo in the right direction to achieve a definitive diagnosis and to me that's money well spent.  When you've got that diagnosis then you can be referred back to him for surgery confident that it's all going to be positive.

I know it's not quite the answers you were hoping for Sue but I do honestly believe it's a positive step forward.  But isn't the wait intolerable .......?  We're in the same boat there.

Chin up, on we go ......

Jasmine x
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Re: Room for one more on the FHH chair?

Post by Amanda Lynne on Sat May 24, 2014 7:09 am

I'm so sorry Sue
I can only say I know exactly how you feel at the moment and I'm finding it all a bit too much as well.
Love Amanda xxxx
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Re: Room for one more on the FHH chair?

Post by Dora E on Sat May 24, 2014 7:18 am

@Lucycatnaps wrote:He felt the lump on my neck and does not think it is an adenoma and has advised me to have a fine needle biopsy. 

Hi Sue

Just had to flag up, I'm almost sure there is a bit on parathyroid.com where Dr Norman warns against having needle biopsies on anything that might be an overgrown parathyroid gland. 

From what I recall, it's because the needle damages the gland, and then odd cells can end up in different places separately from the main gland and start growing, and it's impossible to remove them all and you can end up having PHPT forever.  If I recall correctly, they actually refuse to take anyone as a patient who has ever had that kind of biopsy done. 

Don't take my word for it, in case I've misremembered or misunderstood what he said, but please please do go and have a look on parathyroid.com for this info before agreeing to a needle biopsy!  (or if anyone else is reading this & remembers which page that warning was on, please add a link.) 

Of course if your lump is actually something else then this warning wouldn't apply, but that's a bit chicken & egg isn't it :-)

Dora

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Re: Room for one more on the FHH chair?

Post by Jasmine2 on Sat May 24, 2014 8:59 am

Very good point Dora, and well worth checking out Sue .....

Jasmine x
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Re: Room for one more on the FHH chair?

Post by Lucycatnaps on Sat May 24, 2014 9:36 am

Hi ladies,
Yes I had read all that on Dr Norman's page and is exactly why I have been panicking and frightened silly with it.  It is partly why I went to see Mr P as I thought out of all the doctors I have seen he would be the best to know if this could actually be an ectopic adenoma.  When it first appeared my Rheumie sent me for a neck US last December. ENT sent me for MRI, US showed reactive lymph node 18mm, MRI says non specific.  Since then it remains and each time I go see oral and ask they revert back to DEC and JAN report and cannot tell me why it is still there and carry on with the salivary gland problem.  My first appointment with endo and I ask again and he says we can do a fine needle on it, but I panicked having read DR Norman's page and he didn't pursue it.  My rheumie is indifferent regarding an auto immune attack on my salivary gland and I can see. I will have to have surgery to remove it as the dredging has not worked in the duct.  There may be a stone in the actual gland but MRI did not show anything. Orals have been very slow as well, no sialogram etc but again it is a locum and again not that impressed.  After 7 months of neck lump which is not the actual gland am really concerned.  Mr P is the first one to actually feel it properly, tell me it is not the adenoma and go get it biopsied as he said it is large and firm.  He mentioned lymph node or carotid body tumour.  I feel I cannot wait any longer and my follow up oral is on Wednesday,  I will try and get some action out of him then.
Thanks for the heads up, I do feel between a rock and a hard place with it all but for the sake of my sanity I need an answer.
Sue x
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Re: Room for one more on the FHH chair?

Post by Little Audrey on Sat May 24, 2014 11:36 am

I wonder if this is anything like the lump Nancy had on her neck? She struggled terribly to get someone to do ANYTHING to help her. She finally found a surgeon who agreed to remove it. It was huge! I don't know yet if it has been determined exactly what the material was that they removed. I don't think the surgeon was sure. I seem to miss a few posts, so she may have already informed us. Has anyone heard?

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Re: Room for one more on the FHH chair?

Post by Dora E on Sat May 24, 2014 9:41 pm

@Lucycatnaps wrote:Mr P is the first one to actually feel it properly, tell me it is not the adenoma and go get it biopsied as he said it is large and firm.  He mentioned lymph node or carotid body tumour.  ...
Thanks for the heads up, I do feel between a rock and a hard place with it all but for the sake of my sanity I need an answer.

Aaah that is difficult, but yes I see where you're coming from!

At least you've got someone officially saying they think it's something else.  That's got to be better than poking it about to prove it is a parathyroid gland when you already think it is :-)  Hope you get some useful answers soon.

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Re: Room for one more on the FHH chair?

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