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Hi Everyone

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

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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 Amanda Lynne on Tue Nov 04, 2014 1:19 pm

Hi Sue
I think I'm going to email useless Endo and ask her, especially as the short synacthen test I had today is all about cortisol levels and that's a steroid hormone. I just seem to be going round and around between blasted consultants and none of them seem to be grasping what's wrong.
I think you may be right about it only being short lived, Rhumy said it wasn't Mortons when he examined my foot but he wasn't offering any x-ray to check!!!!
Hope you are as well as possible, hugs back too.
Love Amanda xxxx
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Re: Hi Everyone

Post by Little Audrey on Tue Nov 04, 2014 10:40 pm

Sorry to hear the rheumatologist wasn't of much help, Amanda. Most of my appointments are fruitless too. Hard to figure since most of the doctors are melon heads! Laughing

I had a cortisone injection in my wrists about 20 years ago. I had torn some ligaments in there. The injection caused my wrists to be TERRIBLY painful for a couple of hours, but then I had no pain at all! Have never had any since. I guess it helps some things and not others.

I have so much cramping, stiffness, and pain in my neck, I have asked my PA about botox injections to stop the cramping. She thought I was nuts. HER neck has not been hurting HORRIBLY for 3 years straight!!

Glad you got the foot looked at. My heels, feet, and little toe joints are still hurting. I know I should make an appointment with a podiatrist. I just keep hoping it will all go away. I do hope you get some relief soon!

Audrey

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Re: Hi Everyone

Post by Kathi209 on Wed Nov 05, 2014 4:19 am

Amanda my hubby also had those shots in his back the first one didn't work to well but he had a second one and low and behold that helped him a great deal. It's been a couple of years ago and his back now does give him trouble but he said not like it did. Good luck on that. I love you I love you I love you Kathi

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Re: Hi Everyone

Post by Kathi209 on Wed Nov 05, 2014 4:52 am

You know Amanda I have always had high serum calcium and ionized calcium but my urine calcium has always been normal and my damn PTH runs normal to slightly elevated except 2 time in 3 years it was 101 and 99. My phosphorus is right in the middle of normal and my magnesium in on the  higher end of normal.  I did have a positive sestamibi saying the adenoma is in my chest but 2 MRI couldn't confirm that. So I'm not even sure that sestamibi is even right. So FHH is always on my mind, and how do we get help with that, I have tried to research that myself, because I do feel it does carry some symptoms from what I have read. I see my endo this Monday and see if he brings up the fact my pth went down to 71 and the magnesium level is high normal. I am a little bit on a rant but honestly Fhh people need to be looked after to and not just told that's your normal. I call  B.S on that. Okay I'm  done.  flower flower flower Kathi

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Re: Hi Everyone

Post by Amanda Lynne on Wed Nov 05, 2014 9:05 am

Hi All
I had short synacthen test yesterday which I had a bit of a reaction to and felt very faint and nearly threw up (apparently it's quite common) not nice, I never have any problems with blood tests so this was quite a surprise. However Endo nurse said to check with Endo if it's ok to go ahead with cortisone injection Rheumy suggests as the synacthen test is to check if adrenal glands are producing enough cortisol !!!!!!!!!!
That makes me wonder if there's something going on with adrenals, if Rheumy wants to inject me with some to see if it improves pains !!!!
Ok I emailed useless Endo and asked her what I should do, if I haven't had reply by Tuesday I will ring her secretary and reallyannoy her (she put in letter to GP about the numerous letters emails & phone calls !!!!! cow) I wouldn't have to keep getting in touch if she did her job properly.
I have also told her that I'm seeing GP today and will be asking for referral to Geneticist, I bet that will really put her back up but to be honest I don't care any more, what does she expect ? Under her care and by herself I have been told I have a genetic disease and that's as far as she is prepared to go, who's going to answer my questions about it? Who can advise me what other health implications it may or may not have? What about passing it to my children? There's loads of things I need answering and she can't do that so why haven't been referred.
I'm sorry if I'm having a rant but it's my health this silly woman is messing around with, you bet if it was a member of her family she'd make sure it was all followed up.
I do hope GP is helpful this morning or I might loose it.affraid
Deep breaths:D I'll let you know how it goes.
Love Amanda xxxx
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Re: Hi Everyone

Post by Brigitte0 on Wed Nov 05, 2014 9:40 am

Go Amanda, you sound like you're spitting fireworks yourself! I think you're right: your Endo hasn't done her job properly and you're having to fight for recognition of that which is just wrong. You should have been referred to Genetics as soon as you tested positive for FHH. It's time your Endo stopped messing about like a child, telling tales to your GP. Good luck with your GP appointment. 

Love and hugs 

Brigitte xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Wed Nov 05, 2014 10:56 am

Ok I'm feeling better now. I saw GP who is usually pretty blahhhhhh.
I tried to give her all info (you all know how difficult it is to get whole story out in a condensed version).
She was very surprised I hadn't been referred to genetic clinic !!!!cheers
She was also very surprised I hadn't been offered an x-ray on my foot and printed out a form so I can take to local x-ray dept when I'm free!!!!!
I did tell her about steroid injection and that I've sent email to Endo, she said deffo don't have it until you have ok from her. She said why don't you phone secretary so I showed her on her PC screen in letter from Endo to GP where she had commented about phone calls, emails and letters and I said it's quite difficult to contact her without annoying her and the contact was only because her clinic never followed up doing anything they had told me they would.
GP said if you haven't heard back by early next week ring anyway and if you still can't get answer delay steroid until you do, which was what I would have done anyway but nice someone else is thinking the same way as me.
I do feel as though I've actually got somewhere this morning, I can't actually remember the last time that happened with a medical appointment. What a relief.
Love Amanda xxxx
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Re: Hi Everyone

Post by Brigitte0 on Wed Nov 05, 2014 11:13 am

Hooray and Yay! It was about time your GP was useful and it sounds as though you had a very productive appointment Smile  I'm very pleased for you  cheers

Love and many hugs 

Brigitte xxxx
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Re: Hi Everyone

Post by Jasmine2 on Wed Nov 05, 2014 11:21 am

Phew! At last something positive from a medic to make you feel 'heard' and taken seriously! So gratifying Amanda ....... you needed that! Here's hoping she'll stand in your corner to get the endo to up her game, although she sounds so up herself (the endo, that is) she probably wouldn't take any notice of a mere GP! That woman seriously needs a slap ...... and to be taken down a peg. At some stage Amanda, when you feel you don't need her any more, I would seriously consider making a complaint about the way you have been treated throughout all this, it's just not good enough!

Chins up .......

Jasmine x
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Re: Hi Everyone

Post by Amanda Lynne on Wed Nov 05, 2014 11:35 am

Hi Brigitte & Jasmine
Yes it helps so much to have an appointment where I didn't come out feeling like I was either going to cry or strangle someone.
In fact I'm feeling so good I'm going to go and have my high lights done and cover up the mousey/grey roots. Whoop whoop.
I am definitely thinking that I will be making a complaint about no genetics referral by Endo and also mention all the other problems I've had on the way to diagnosis. Now I'm just feeling happy to be getting x-ray of foot and referral to Geneticist, one small step at a time.
Hope you are both feeling a bit better and both get some of those answers you need.
Love and hugs Amanda xxxx
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Re: Hi Everyone

Post by Tigerlily on Wed Nov 05, 2014 11:50 am

Hi Kathi

I hope you don't mind if I comment of your levels, as they are all neatly packaged there in your post above, and I don't have to strain my mush mind to remember them!

If your serum calcium and ionised calcium are both always high, then as I understand it your PTH should be very low in the range or almost undetectable, if your system is working correctly with no PTH problems.

The PTH level that "went down to 71" is still high in the PTH range, which FP describes as "inappropriately unsupressed".

I have a 2cm PTH adenoma and my magnesium is almost always normal/high. It is my inorganic phosphates that are low, and this is one indicator of PTH disease. My urine calcium has been high (just over the top of the scale), but last time it was measured it was "normal", so I expect the body excretes excess calcium at different rates at different times, hence this variation.

I think the sestamibi you had is more to be trusted than the MRI's. The sestamibi specifically looks for the parathyroid glands that retain the contrast that is injected before the scan, if I have understood this correctly, and if the nuclear sestamibi scan detected an adenoma in your chest, then perhaps this should be followed up.

In fact, it was impossible for me to get a sestamibi here (or even a plain old ulstrasound) without the diagnosis of PTH disease being accepted by my endo (she didn't accept the possibility - said my high and fluctuating PTH levels were due to a previous Vit D deficiency 12 months ago ... blah ... blah.) So you are some way forward, in my view, in that you have actually had a sestamibi that showed something up. Might you be able to return to this fact in your discussions with your endo on Monday? Someone spent the money on giving you a sestamibi scan; it doesn't make sense that they don't take any notice of its results.

If your serum calcium is high - what is it, by the way? mine is usually above 2.5, more often 2.6+, but sometimes as low as 2.39 (x 4 for US units) - and your PTH is not supressed (the usual inverse relationship that Ca and PTH live in normally - sorry, Kathi, I'm sure you know all this) then this would indicate primary HPT from the adenoma in your chest that has been seen on the sestamibi scan.

I hope you can get some sense out of your endo when you see them next week, as with these results they shouldn't be leaving you in limbo without following this up somehow.

Rant over - Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Tigerlily on Wed Nov 05, 2014 11:56 am

Hi Amanda

I agree with Jasmine and Brigitte - such a good result for you! We really need a GP on side in all of our PTH travails. If we don't have one (guess who? me ...) then no-one is project-managing our case but ourselves - and we end up doing it with one hand tied behind our backs and with only half a brain. That is not the way it should be done!

Well bloomin' done (and other stronger expletives) for showing her on-screen the comments from the endo about you contacting her. I agree that a complaint is in order when you have no further need of her. I need to make one about my endo as well, so perhaps we can share notes on how we do that?

Meantime, you go girl with the highlights! It will make you feel so much better!

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Amanda Lynne on Wed Nov 05, 2014 12:30 pm

Thanks Tigerlily I was quite shocked when she actually took notice and agreed with me. I also mentioned to her that although I have been diagnosed with FHH that doesn't get away from the fact that I have had a PTH Adenoma and there could possibly be more, a fact that Endo doesn't acknowledge. She said best thing to do I see what happens with appointment in Jan 15 and if she's not investigating or at least monitoring or even if she discharges me (which is what I think will happen if nothing else shows up before then) to then see GP and we can decide how to move on from there, I think she was saying see another Endo. What I really need is one who specialises in calcium problems I'm sure James Alquist (think that's correct) does but there maybe more.
I'm more than happy to share anything you need. Very Happy
Yes I won't be looking like an grey old lady any more........ Just an old lady;).
Love Amanda xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Wed Nov 05, 2014 12:32 pm

Thanks Tigerlily I was quite shocked when she actually took notice and agreed with me. I also mentioned to her that although I have been diagnosed with FHH that doesn't get away from the fact that I have had a PTH Adenoma and there could possibly be more, a fact that Endo doesn't acknowledge. She said best thing to do I see what happens with appointment in Jan 15 and if she's not investigating or at least monitoring or even if she discharges me (which is what I think will happen if nothing else shows up before then) to then see GP and we can decide how to move on from there, I think she was saying see another Endo. What I really need is one who specialises in calcium problems I'm sure James Alquist  (think that's correct) does but there maybe more.
I'm more than happy to share anything you need. Very Happy
Yes I won't be looking like an grey old lady any more........ Just an old lady❤
Love Amanda xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Wed Nov 05, 2014 12:33 pm

Smiles not working properly that's why it says heart instead of showing picture.
A xxxx
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Re: Hi Everyone

Post by Tigerlily on Wed Nov 05, 2014 12:43 pm

That is at least a plan, Amanda, that's good.

I only mentioned James Ahlquist as he was the one recommended by FP - and consulting JA might be a way of getting them both involved in your case.

Have a happy hair day!!

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Lucycatnaps on Wed Nov 05, 2014 9:26 pm

Hi Amanda,
I am so glad that your appointment went really well, it makes such a difference if someone actually listens and takes you seriously.    It seems that at least there is some form of plan being put in place and I hope the end result is that you start feeling a whole lot better.  You clearly are having symptoms so the next step is how to resolve or minimise them.  I totally agree that seeing a geneticist should be a priority and maybe he would also be able to give advice on treating the ongoing symptoms.  Glad you are getting your foot X-rayed!
Hugs Sue x
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Re: Hi Everyone

Post by Kathi209 on Wed Nov 05, 2014 10:07 pm

Amanda I'm glad you have a plan in place. I do agree that a geneticist could be a big help especially where the kids are concerned. Sorry about hi jacking your post, but thanks Tigerlily for your support. I do get a little wound up if I feel the doc's aren't going to be  helpful to one of us.
                                                                                   Kathi

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Re: Hi Everyone

Post by Tigerlily on Thu Nov 06, 2014 2:56 pm

So do I, Kathi - so do I !!

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Little Audrey on Thu Nov 06, 2014 3:19 pm

Well, I haven't been on here for a few days, and it seems things are buzzing.

Amanda, I am very sorry you are having to do so much of your endo's job for her! Seems there are many doctors who have no idea how to do their jobs!

I'm very happy you had a good appointment with your GP. Sounds like she has her thinking cap on, which always helps. Yes, I do think you need to see a geneticist. Hard to imagine the endo didn't think of that. Although, considering how dense my endo is, I guess it shouldn't surprise me. I'm still not sure what they get paid for.

As far as the cortisone injection goes, I do believe cortisone is considered the inactive form of cortisol, so I don't think it would matter to get the injection for your pain, but it would, of course, be good to get that ok'd with your doctors first.

Kathi, I do hope you get that much needed diagnosis before too much longer. I sure wish there was a much simpler, quicker way to get this darned disease diagnosed! I often wonder how many of my other issues have been caused or worsened due to my 3-year long struggle to get diagnosed and cured. This greatly angers me.

Onward we go!

Audrey


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Re: Hi Everyone

Post by Amanda Lynne on Thu Nov 06, 2014 7:40 pm

Thanks Ladies I really appreciate your comments and help.
Still no blooming answer from Endo.
A xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Tue Nov 11, 2014 1:10 pm

Just had a lovely Birthday foot X-ray. Radiologist said she thought it sounded like Mortons Neuroma which won't show up on X-ray only ultra sound.
I guess I'll find out in 10 days time, that's just about as long as it takes to get an appt at my Doctors anyway Neutral
Amanda xxxx
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Re: Hi Everyone

Post by Tigerlily on Tue Nov 11, 2014 1:39 pm

Ah, Happy Birthday, Amanda! Hope you're having a great day
and not feeling at all de-feeted at the moment!!

Join the club with the Morton's Neuroma - god, it can be really painful when it "goes", can't it? It seems to help to anchor the offending toe to the next one sometimes as a temporary measure to avoid the pain, so I keep a reel of microporous tape in my bag ready to do that if I feel it's about to "go".

It showed up quite clearly on US for me, so ask for one to get it diagnosed properly. Not sure if there's any treatment/cure, though. I'd be glad to know what they tell you!

K-e-e-p  D-a-n-c-i-n-g on your Birthday!

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Amanda Lynne on Tue Nov 11, 2014 1:52 pm

Hi Tigerlily
Thank you for my Birthday Wishes, I'm allTOEgether better for them.
It is rather uncomfortable to put it mildly. I don't actually feel it go it just some days it feels like treading on a sharp stone in the bit next to the ball of foot.
I've looked it up and the radiologist also said they can give steroid or pain killing injection into it to ease it or they can freeze it by injecting it.
Hey I've got a great idea what about Botox....... They could do my face afterwards  Shocked but I'd be worried my face might end up worse than it is now:affraid:
Oh yes I'll be dancing on the tables by the time the night is over, can you imagine the look on my children's faces if I did:oops:paleNo
Love Amanda xxxx
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Re: Hi Everyone

Post by Little Audrey on Tue Nov 11, 2014 3:57 pm

Well, Happy Birthday, Amanda!! clown There's a little clown for your party.

Sorry to hear you started the celebration off with a foot x-ray, but if it turns out to be of some help, I guess it would make it all ok. I do hope you get some relief very soon!

I have a lot of foot pain, but it doesn't sound like Morton's. It makes me very angry that I am reminded of it every time I take a step, or, in my case, many times when I'm just sitting. It's better than it was, though, so I guess I shouldn't complain. I'm hoping that time will cure all.

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Re: Hi Everyone

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