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Email sent to FP

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Email sent to FP

Post by Amanda Lynne on Fri Nov 21, 2014 2:00 pm

Well I've done it, I've sent an email to FP I hope it makes some sense to him as it was really hard to condense 2+ years of crap into 1 smallish email.
I hope he doesn't just see FHH and dismiss it Crying or Very sad
Love Amanda xxxx
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Re: Email sent to FP

Post by Tigerlily on Fri Nov 21, 2014 3:11 pm

Well done, Amanda - I bet you hear from him by early next week.

Love from Tigerlily xxxx

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Re: Email sent to FP

Post by Brigitte0 on Fri Nov 21, 2014 3:39 pm

I'm very pleased you've bitten the bullet and emailed him, Amanda. I'm looking forward to hearing about his reply.

Love and many hugs

Brigitte xxxx
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Re: Email sent to FP

Post by Amanda Lynne on Fri Nov 21, 2014 4:33 pm

Thanks Tigerlily & Brigitte
I won't be surprised if he can't do anything but I have to give it a go especially after Endo saying about another mibi.
Love and loads of hugs.
Amanda xxxx
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Re: Email sent to FP

Post by Tigerlily on Fri Nov 21, 2014 5:52 pm

Rest up for the weekend, Amanda. I'm sure he'll give a full reply, he's that sort of guy.

Love from Tigerlily xxxx

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Re: Email sent to FP

Post by Amanda Lynne on Fri Nov 21, 2014 9:12 pm

I think the expression is put in my place.
FP has replied. He said I was an interesting case !!!
He said " whilst PTH and FHH can co-exist it unusual and unlikely !!!!!"
FHH does have symptoms they don't know why, the histology of PTH glands are unusual which explains the findings.
He says " you are in very good endocrinological hands and I would not suggest surgery"
I guess this means I have no chance of ever feeling better,
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Re: Email sent to FP

Post by Kathi209 on Sat Nov 22, 2014 1:55 am

Oh boy Amanda I am sorry. From what I have read Fhh does have symptoms. Have you talked to endo about cincalcet [ ok I spelled that wrong]It seemed like Racheal was feeling better on it. Maybe  worth a try. Hugs Kathi

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Re: Email sent to FP

Post by Amanda Lynne on Sat Nov 22, 2014 8:24 am

Hi Kathi
As of yet my Endo is adamant that FHH has no symptoms so I have to fight that battle first.
Love A xxxx
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Re: Email sent to FP

Post by Brigitte0 on Sat Nov 22, 2014 8:27 am

Well. I wasn't expecting the brush off Sad  When it came up before about FHH and symptoms, there were plenty of articles on the Internet about it and I definitely remember reading about some trial with cinacalcet. And does anybody like to explain how you had an adenoma removed back in the day when FHH wasn't in the equation? And FHH and PTH can co-exist but it's unusual and unlikely.... So what are your symptoms related to then, it's a contradiction. 

I wish I could offer some advice but I feel somewhat miffed on your behalf. You do have the sestamibi option to pursue with your lovely Endo, so all is not lost. Sending you loads of extra hugs. 

Love 

Brigitte xxxx
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Re: Email sent to FP

Post by Amanda Lynne on Sat Nov 22, 2014 8:40 am

Hi Brigitte
No I wasn't expecting that either, I think he's saying about the adenoma that is what they expect in FHH but what I was told by Endo is that FHH just means that my body runs on slightly higher calcium than other people's and its a benign condition that causes no problems.
That's the polar opposite to what FP has said.
I have sent a short reply basically saying how do I now convince Endo there's symptoms and is there any treatment.
I was surprised he said you are an interesting case and not offer any advice other than don't have surgery.
Gutted xxxx
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Re: Email sent to FP

Post by Brigitte0 on Sat Nov 22, 2014 8:46 am

Yes Amanda, the words run as a contradiction to me. I wonder if you can get a second opinion from someone else, or maybe a genetic counsellor would have the answers. After all, their job is to consolidate genetic diseases and dish out advice and treatment. 

Loads and loads of hugs and love 

Brigitte xxxx
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Re: Email sent to FP

Post by Amanda Lynne on Sat Nov 22, 2014 8:57 am

Hi Brigitte 
I think that's my only hope now.
I just wonder if FP and my Endo know each other and he didn't like me going behind her back, it just seemed a strange reply, usually they offer some sort of "I'm sorry you are going through this" type if answer even if it's not genuine.
I wasn't critical of any one or any treatment I'd had so I don't understand the brush off.
Maybe he just didn't like me, it was on his private email as I would have paid for consultation. I don't know but just saying you've got FHH other op was pointless don't have another, you will have symptoms but no advice about how I deal with them. 
I don't know if he realised what impact that email would have.
Love Amanda xxxx
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Re: Email sent to FP

Post by NancyMi on Sun Nov 23, 2014 7:40 pm

Oh Amanda,
      I feel so badly for you. 
Has a second testing for FHH ever been talked about? I am just wondering if a second test would have the same results as the first. 
      Also wondering if in the future if you had another scan if that would either show anything or not.  I just want the best for you and don't want them to miss anything. 
      Also, I see your reasoning regarding whether or not the two practitioners have communicated.  
      Keeping thoughts of you in my heart, 

Nancy

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Re: Email sent to FP

Post by Little Audrey on Mon Nov 24, 2014 12:13 am

So sorry to hear of all of this, Amanda. I agree with Nancy. I think another scan would not be a bad idea. It sounds like your doctors are not really sure what the heck is going on! And another FHH test would not be a bad idea either. If you had 1 adenoma removed already, there is a good chance there just might be another in there. You need some clear, straight answers here!

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Re: Email sent to FP

Post by Tigerlily on Mon Nov 24, 2014 10:03 am

I agree, Amanda - and Audrey's phrase "need some clear straight answers" would be a good one to use (I'll borrow it too, Audrey, if I may!).

After all the fiddling about and the time spent so far just trying to feel better than you do, some clear straight answers would not go amiss.

Keep us posted on what you decide to do next - we are all cheering for you.

Love from Tigerlily xxxx

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Re: Email sent to FP

Post by Hadleigh on Mon Nov 24, 2014 10:26 am

Bear in mind that " a clear straight answer" is not always possible. My GP once said to me that sometimes they just don't know, especially with the complex problems that most of us present with. 

I am going to be wanting an answer from my endo when I next see her but realistically I'm not expecting to get one as I know I am too complicated. 

Not making excuses for them, just saying that unfortunately getting a definite diagnosis is sometimes tricky for them and very frustrating for us Neutral

Nelly
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Re: Email sent to FP

Post by Amanda Lynne on Mon Nov 24, 2014 3:01 pm

Hi Ladies
Thank you so much for all your comments and good wishes.
I do think I have to accept that I almost certainly do have FHH, there is too much pointing in this direction, low urine calcium, high ish magnesium, my Sister having high calcium as well (she is being referred to Endo privately so this could well be of help to me, depending on what they say) looks like my brother may have high calcium as well (gall stones and AFib) just waiting to see if he bothers to contact me after he has seen doc.
So it probably is correct, what I need to find out now is do I have FHH, if FHH causes pth hyperplasia (I think this is what FP is eluding to when he says pth histology is unusual) but my surgeon has told me 3 x that it was an adenoma and he says that was confirmed by pathology, so someone is incorrect !
The questions I need answering are..........
Can you have pth & FHH (FP said it can occur but unusual and unlikely !!!) why unlikely in my case ????
If so do I have another adenoma ? I think I will have to go down the MIBI route just in case something can be seen. If any evidence can be found of another adenoma then I need to ask the question is this normal for people with FHH ?
Will removing it improve my health ?
Does FHH have symptoms ?
Alas although FP says I am in very good Endocrinological hands he disagrees completely with her theory that FHH has no symptoms.
I did send a second email telling him that and asking if he knew of any form of treatment for FHH but I haven't received a reply, I don't think I will.
It maybe that I will have to just get on with living with PTH symptoms but I do need the so called experts to at least agree on the symptoms being present or not.
Love Amanda xxxx
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Re: Email sent to FP

Post by Tigerlily on Mon Nov 24, 2014 4:14 pm

Just a quick reply, Amanda, to say I think that's a good assessment of the situation and that you have a plan there now.

I think you can have PTH and FHH. And I also think that sometimes PTH disease is just part of the picture of other conditions.

Just getting my paperwork in order to see FP tomorrow, but will be back with other thoughts soon - hope you don't mind me sending them!

Love from Tigerlily xxxx

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Re: Email sent to FP

Post by Londanna on Mon Nov 24, 2014 4:47 pm

Good luck tomorrow Tilgerlily.   I am keeping my fings crossed that things go well.

Anna

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Re: Email sent to FP

Post by Londanna on Mon Nov 24, 2014 4:47 pm

Meant to say 'fingers'... and toes.

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Re: Email sent to FP

Post by Amanda Lynne on Mon Nov 24, 2014 5:01 pm

Good luck with FP tomorrow, I'm very grateful to you for sending any/everything.
Love Amanda xxxx
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Re: Email sent to FP

Post by Tigerlily on Mon Nov 24, 2014 6:30 pm

Thanks so much Anna and Amanda - I'll report back as soon as poss.

Love from Tigerlily xxxx

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Re: Email sent to FP

Post by Brigitte0 on Mon Nov 24, 2014 9:07 pm

Amanda, I think you have everything in hand in your mind and obviously it would be nice if FP responded to your email with a few answers. The MIBI will be a good thing done and you might find more advice when you eventually get to see the geneticist. Anything you learn, or your brother and sister find out, may be beneficial for all of you. 

Tigerlily, best of luck for tomorrow, I'll be thinking of you  cat  flower

Love and hugs 

Brigitte xxxx
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Re: Email sent to FP

Post by Little Audrey on Tue Nov 25, 2014 1:08 am

Sure, Tigerlily, help yourself. Smile

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Re: Email sent to FP

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