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Hi Everyone

Post by Amanda Lynne on Thu Oct 23, 2014 1:08 pm

First topic message reminder :

Hi All
I just thought I'd pop on to forum and give you a brief update on what's going on in the world of FHH.
Before I do that I'd like to say I have been trying to keep up with all your stories and have missed you all loads. I hope you are all progressing on your way to better health, whether it be pre op or post op.
Well I haven't got much news I'm afraid, I got a letter from Endo together with my Genetic results tis reads as follows.
Heterozygous mutation identified......... (Sounds like I'm a Mutant Ninja Turtle) alien (nearest I could get to a turtle)
Mutation details : 
GENE: CASR
LOCATION: Exon 7
DNA DESCRIPTION: c.2065G>A
PROTEIN DESCRIPTION: p. Val689Met (p.V689M)
CONSEQUENSE: Missence

None of this means much to me apart from it confirms I have FHH. 
The Endo didn't know any more than me but wouldn't admit that and kept saying FHH does not have symptoms.
In her letter to GP (I was copied in) she states that this patient is very frustrated about her ongoing symptoms but that she has explained that FHH would not really explain these (so why has she then ruled out another PTH adenoma !!!)
She has written to my Rhumatologist as she now thinks the balls in his court especially re the neck/head pains. 
However she has arranged for me to have a short Sycanthen test as my 9am Cortisol test was 381 nmo/L (this means nothing to me)
I think now she has the kudos of diagnosing a FHH  patient she now wants rid of me.
I have emailed her saying yes I accept I have FHH but as I have already had one PTH Adenoma is it possible I could have more, what are the other health implications of FHH, is there any relation to either of my parents health problems when they died (liver cancer Mum, Parkinsons Disease Dad) and as I was diagnosed with this whilst being her patient I feel that if she can't answer these questions then she refers me to someone who can.
My latest bloods are
Calcium 2.77
Adjusted 2.65 range 2.1-2.55

These are my thyroid results
TSH 3.09.  Range 0.35-5.5
Free T4 12.4 Range 9-22.7
Free T3 3.6 Range 3.5-6.5
Thyroid per oxidase <33 range 0-60
I don't know if these mean anything she says they are all fine. 

What concerns me about this is that I've had a raised growth hormone level ( since tested and all ok) and a low T4, one before this was back up to 11.0 with TSH of 2.54 so I'm not sure why these results are messing around.
Ok I think I've gone on enough now.
Love to all Amanda xxxx
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Re: Hi Everyone

Post by Little Audrey on Thu Nov 13, 2014 7:24 pm

And speaking of people not doing their jobs............ I called my PA's office on Monday and asked that they send a script to my home for free T3 testing. If you recall, at my appointment last Friday, my PA ordered TSH, Free T4, and Total T3. I called on Monday to ask for the free T3 script. As I am really suffering from these darned muscle cramps and so full of water, I REALLY want to get this all resolved as quickly as possible. So I figured if I called on Monday morning, they could get the script in the mail that day or at the latest on Wednesday (there was no mail service on Tuesday due to the holiday). It should take no longer than a day to reach my home after it is mailed, so it should have been here today at the latest. I had made plans to get to the hospital tomorrow morning early to get all of this labwork taken care of. Well, I just went up to get the mail, and it did NOT arrive! So I had to call the doctor's office AGAIN and ask that they fax the script now to the hospital. Not sure who is at fault here; could be the staff there at the PA's office or could be the postal service, but somebody is not doing their job, which then causes me to have to go to a little more trouble to get the job done. Now I'm going to have to call the hospital to make sure they received the fax, because if they didn't, I can't go tomorrow, because there's no way I'm going to the hospital twice to get this stuff done! Evil or Very Mad

What's with people?!!

Audrey

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Re: Hi Everyone

Post by Tigerlily on Thu Nov 13, 2014 7:34 pm

Oh, Audrey - sorry to hear of all this - Mercury must be going backwards in the heavens or something to be causing all these mix-ups in communications.

Sometimes it feels as if all this cr-p happens to us just because we are strong enough to take it and are able to be our own advocates. I can't imagine what the frail little old lady patient does when all of this happens to her. God, that makes me angry! Oops - splenic rant, there, Audrey - sorry!!

Hope the hospital got the fax and someone felt the barbed edge of your tongue across the phone-lines - sometimes that's the only way to get this stuff done.

Good luck tomorrow, Audrey - let us know how it goes.

Love and Hugs from Tigerlily xxxx

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Re: Hi Everyone

Post by Little Audrey on Thu Nov 13, 2014 7:52 pm

Thanks, Tigerlily. Yes, something is surely going on up there to be causing all of these messes!

I'm going to go call the hospital right now to check on that fax. I agree with you about these things happening to us because we seem to somehow muster the strength to deal with it all. Still stinks, though, doesn't it?

It just started snowing here as I was typing that paragraph. It looks so pretty, but I am dreading winter. Although, summer was no picnic this year since I had to wear long pants the entire time to hide my badly swollen legs, ankles, and feet, so I guess I should be thankful for the cold weather this year. I am praying that my little nutty nephro can figure this all out before next summer.

I have decided to try to increase my magnesium supplements. In 2012 my magnesium was 2.1. In February of this year it dropped to 1.8 and then a few months later to 1.7. The old reference range used to be 1.7-2.4. They have changed it now to 1.5-2.9. So mine is not low, but it is very low/normal. Since low magnesium can cause muscle cramps and edema, I will be raising mine! It might not do a darned thing to improve my symptoms, but I will be trying it. I don't want to increase it today because I'd rather get my blood drawn with the level where it is right now. Tomorrow I will be raising it.

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Re: Hi Everyone

Post by Amanda Lynne on Thu Nov 13, 2014 8:04 pm

Thanks Ladies I have a lot to think about.
Love A xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Sat Nov 15, 2014 12:06 pm

I decided to email Endo to tell her I wanted her to call me on landline, I also mentioned that I received her email saying steroid injection was ok, too late and I'd already cancelled !!!
Amanda xxxx
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Re: Hi Everyone

Post by Lucycatnaps on Sat Nov 15, 2014 12:27 pm

Hi Amanda,
I was in a similar situation after my apppointment with the awful locum endo I saw in September and eventually I did get a phone call from the nice endo and chance to discuss how my last said appointment had been conducted.  I really sympathise as it took over four weeks for the "connection" to occur, I stayed home as much as possible and of course he rang the one day I was out, the next time my husband took the call and arranged that he would ring me the next morning, which he did.  It was four weeks of extra anxiety and there must be an easier  way to be able to contact them.  I did prepare a list of questions/concerns in advance so that if he rang unexpectedly I would not feel a jibbering twit.  I am useless with my mobile so never give that number out.  I hope you hear from her soon, you would think they would be a bit more caring especially as she knows you are still symptomatic.
Hugs from Sue x
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Re: Hi Everyone

Post by Amanda Lynne on Sat Nov 15, 2014 4:04 pm

Hi Sue
Yes it's a pain just waiting around for them and they know that. I will have all my info sorted well before, I just wonder if she will have anything other than "FHH has no symptoms, no other health implications, so stop being a pain and getting on my.......... Wick"
At least I will get a chance to discuss my concerns before my appt in Jan but I just get the impression she's written me off that she's done her bit and I just gave to live with the diagnosis, I hope she proves me wrong.
Love Amanda xxxx
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Re: Hi Everyone

Post by Brigitte0 on Sat Nov 15, 2014 4:14 pm

I sincerely hope she proves you wrong Amanda!! Silly woman needs to refer you for Genetic Counselling since you have a genetic issue going on. It should have been the first thing she did. She gets on my wick just hearing about her; she needs a good kick up the........ backside  Shocked  As you know, I am all patience and tolerance (not)! Wink 

Love and lots of hugs 

Brigitte xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Sat Nov 15, 2014 11:33 pm

Hahaha Brigitte I so wish I could introduce this Endo to my forum friends, wouldn't it be brilliant if we could take a forum friend to our appointments.
That would frighten them affraid
Love Amanda xxxx
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Re: Hi Everyone

Post by Little Audrey on Sun Nov 16, 2014 1:22 am

Wait, I'd like to go too!! Laughing It would be so cool if we could all go as a group to all of our appointments! Those dimwit doctors wouldn't stand a chance!

One thing I am very thankful for is that I don't have to wait to be referred to any doctors. If I want to see a doctor, I just call and make an appointment. That would be so aggravating having to rely on one doctor to refer you to another one. That's a shame.

Good luck, Amanda!

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Re: Hi Everyone

Post by Kathi209 on Sun Nov 16, 2014 4:29 am

I am stuck with  HMO insurance so I am in the same boat. I don't have to pay for my insurance as it is part of my retirement package, but it does suck at times.

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Re: Hi Everyone

Post by Amanda Lynne on Sun Nov 16, 2014 1:26 pm

Hi All
I have just found out that my Twin Sister has been diagnosed with a mild case of Atrial Fibrillation (irregular heart beat) and is being put on low dose beta blocker. She has high calcium, my Brother had to have operation to correct this, he also had gallstone/gallbladder removed as have I.
Coincidence ? I think not, I think this should be included in my discussion with Endo.
A xxxx
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Re: Hi Everyone

Post by Little Audrey on Sun Nov 16, 2014 4:01 pm

So sorry to hear about your sister's heart issue, Amanda. Also sorry to hear about your brother. Yes, I definitely think you need to discuss all of this with your endo. So far, I seem to be the only one in my family with massive endocrine disorders. My sister is hypothyroid, but that's the extent of her endocrine issues. I guess I'm just lucky. Smile

Heart issues are nothing to mess with. Please discuss this with your endo! It does sound to be genetic.

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Re: Hi Everyone

Post by Brigitte0 on Sun Nov 16, 2014 4:08 pm

Goodness, Amanda, I am sorry to hear this and agree you should discuss further with your Endo. 

All the best and love and hugs 

Brigitte xxxx
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Re: Hi Everyone

Post by Tigerlily on Mon Nov 17, 2014 3:00 pm

Sorry to hear this, Amanda, but glad your sister's AFib is mild.

Have you seen this blog page re HPT and AFib:

http://blog.parathyroid.com/atrial-fibrillation-high-calcium/

I agree with you - no coincidence.

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Amanda Lynne on Mon Nov 17, 2014 3:57 pm

Hi Ladies
I'm glad the AFib is mild too, I have at last spoken to my Brother and he is going to speak to his DR as well. I read that the ablation op they do for AFib will not work permanently for people with FHH because it's not correcting the source of the problem just the after affects of the high calcium on the heart. The high calcium will carry on affecting it, quite a worry as my Brother has had the op twice already !!!
I have irregular heart beat but it was diagnosed as an ectopic heartbeat which is common apparently and causes no problems..........I hope.
Love Amanda xxxx
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Re: Hi Everyone

Post by Jasmine2 on Mon Nov 17, 2014 5:50 pm

I have an ectopic heartbeat Amanda, plus calcification in one of the main arteries to my heart which causes angina and breathlessness. Hypercalcaemia, the disease that just keeps giving......

Jasmine x
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Re: Hi Everyone

Post by Amanda Lynne on Mon Nov 17, 2014 10:44 pm

Doesn't it just.
Love A xxxx
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Re: Hi Everyone

Post by Little Audrey on Thu Nov 20, 2014 1:26 am

My goodness, I'm feeling very fortunate. As far as I know, my only heart issue is a murmur. I do feel badly for the rest of you. Crying or Very sad

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Re: Hi Everyone

Post by Amanda Lynne on Thu Nov 20, 2014 7:07 am

I'm not feeling very lucky at the moment, fridge freezer has now started to go wrong, engineer coming out Monday but I have to empty it and defrost for 48 hrs before he comes Mad:|
The worst thing is that my Son after 8 years of driving without even a scratch on his car has had an accident. Thank god he's ok, Monday night on way home from work in the rain woman in front did emergency stop for no reason, he wasn't driving too close and was already braking but road was wet and he slid into the back of her. Because it was front impact even though at a low speed, air bags went off, which is a good thing but now even though there is minimal damage to his car ( bumper,grill and small dent in bonnet) replacing air bags is very expensive, so there's a chance his beloved mini 09 reg only 30,000 miles mint condition will be written off by insurance company and they will give him rubbish money for replacement.
He is gutted, he knows it's his fault but I feel really sorry for him.
When things happen to your children it tears your heart apart, I love my kids so much.
Sorry for opening up so much but what with everything else it's all a bit crap at the moment.
A xxxx
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Re: Hi Everyone

Post by Brigitte0 on Thu Nov 20, 2014 8:43 am

Fridge freezer nightmares are me too! Mr Brigitte took the blasted thing apart the other evening. It's frost free.... yeah right. Behind the back panels, it had blocks of ice and Mr Brigitte said Bother many times as he hair dryed the ice away! He did fix it though, so I can't complain. 

I'm so sorry about your son's accident Sad Unfortunately, these things happen when idiots in front jam their anchors on for no explicable reason. It's how I wrote off my lovely old Ford Escort because it was beyond economic repair. I loved that car. The main thing is that your son was ok. 

I'm sorry things are so crap for you at the moment, it's time your luck changed in a major way. I hope that Endo of yours changes the habit of a lifetime and pulls out all the stops and turns on all the charm during your phone call. If she doesn't, all of us need to form a posse and come to back you up, tell her her fortune and kick her backward thinking up the backside  affraid

Love and massive, huge hugs 

Brigitte xxxx
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Re: Hi Everyone

Post by Lucycatnaps on Thu Nov 20, 2014 9:17 am

Hi Amanda,
So sorry to hear that your son had a prang, but the main thing is he is fine and ok but I do know how much it shakes everyone up and how easy it can happen.  As Brigitte says, your plate has been full of the rough stuff, so it is time for a little dessert and I hope that finally when the endo does ring, that she can actually do something useful to help you.  Good luck with the freezer too, been there done that!
Hugs Sue x
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Re: Hi Everyone

Post by Amanda Lynne on Thu Nov 20, 2014 1:26 pm

Hi Brigitte & Sue thank you for being so kind.
Great news car will be repaired by ins company.cheerscheerscheers
Man said very surprised air bags went off as it only minor damage, air bags cost £2000 to replace affraid  the rest of the work is only hundreds.
Endo called, I won't bore you too much with all the crap but she says FHH has no symptoms !!!!!!!!! It didn't matter how much I argued my case and said about Brother & Sister, she did however say that she couldn't say 100% that there wasn't another adenoma in there and she has spoken to the radiologist about my US (not the radiologist that did it but a senior one) !!!!! and he suggested that I have another MIBI (now why would he do that, I'm curious) so that's all I got out of her, I'm not keen on more radiation but I don't think I have any choice.
Love Amanda xxxx
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Re: Hi Everyone

Post by Brigitte0 on Thu Nov 20, 2014 1:41 pm

Great news about your son's car, yay Smile 

Hmmm about the Endo... I still think that a genetic condition requires genetic counselling. I'm inclined to think sod the radiation and feel pleased that you're being offered a sestamibi as it seems the very least she's going to offer you which is useful and positive. Best of luck. 

Love and many hugs 

Brigitte xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Thu Nov 20, 2014 2:01 pm

Hi Brigitte
When I mentioned the Genetic Councelling she said of course you can go down that route if you want to !!!!
Love Amanda xxxx
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Re: Hi Everyone

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