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MIBI & US done

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Kathi209
Little Audrey
Jasmine2
Tigerlily
Brigitte0
Amanda Lynne
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Post by Amanda Lynne Tue Dec 02, 2014 7:32 am

I had MIBI & US done yesterday morning. Don't know if MIBI showed anything but radiologist said he couldn't see anything but did ask if I'd had any further neck surgery ?! I asked why but he said oh no reason just asking. He did say it was difficult to find PTH glands anyway without MIBI pointing him in right direction of anything suspicious and it wasn't ready to read at that time !
What I did find out from radiographer doing MIBI was that they don't do PTH surgery at Watford but send their patients to HAMMERSMITH HOSPITAL !!!!!!! Well that explains the comments from FP about Endo.
What it doesn't explain is how two consultants dealing with the same patients can have such opposite views on whether a patient with FHH can have symptoms or not ! 
I'm presuming MIBI won't show anything as I'm sure US would have shown anything major. So I think my quest will be to find out if FHH does have symptoms and is the high calcium associated with it as destructive as it is with PTH. 
I'm not looking forward to the result.
Love Amanda xxxx


Last edited by Amanda Lynne on Tue Dec 02, 2014 2:43 pm; edited 1 time in total (Reason for editing : couldn't spell Hammersmith !!!!! Doh)
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Post by Brigitte0 Tue Dec 02, 2014 2:06 pm

A good thing completed for your peace of mind at least, Amanda. Hammersmith, huh?!! Ah well, and FP never did get back to you after your reply to him. Hmmm. 

I think you're right in looking onwards for answers to the questions raised about high calcium and its effects. After all, who's answering the question about osteopenia? Best of luck.

Love and hugs

Brigitte xxxx
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Post by Amanda Lynne Tue Dec 02, 2014 2:51 pm

Hi Brigitte 
No he didn't bother, I'm not holding out any hopes for anything showing on MIBI so I won't be disppointed when it comes back all clear.
I think my quest will be finding someone/anyone who understands FHH. My Twin is still waiting for Endo to contact her re her high calcium and my Brother has told the Dr he's under re his AFib surgery all about my case and given him copies of my letter of explanation and genetic report sooooooo lets see if they can shed any light on it, it might just same me another fight for information.
How are you ? Have the hideous headaches eased at all ? Have you had any more info on why the PTH surgery has caused you these problems ? I do hope so.
Love n hugs too
Amanda xxxx
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Post by Tigerlily Wed Dec 03, 2014 4:54 pm

Hi Amanda

I think you are right in your estimation of the situation with FP and your endo. He obviously is in frequent touch with her and is deferring to her on your case.

I also think you are right to seek someone with expertise in calcium metabolism and FHH, and to continue with your request to see a geneticist for the FHH.

I have read that the calcium elevation with FHH runs a more benign course than with PTH, but with you already having had a PTH adenoma removed, you need someone with a foot in both camps, so to speak. Don't forget that James Ahlquist chap that FP suggested to someone else on the forum.

Let us know what your MIBI scan shows. There doesn't seem to be any logic with these, as my MIBI showed nothing vaguely ressembling a PTH adenoma, even though the US did.

Love from Tigerlily, xxxx

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Post by Amanda Lynne Wed Dec 03, 2014 7:33 pm

Thanks Tigerlily,
My GP has hopefully done a referral to a geneticist, I'm going to GP on Friday to see if foot x-Ray has come back also my ferritin is low so I need to go in to hospital for a day for infusion and just have to get all clear to make appt.
I will do an email to J Ahlquist just to test the water I just need to psych myself up again after the knock back from FP.
I'm so glad you got such good news with the cancellation.
Love Amanda xxxx
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Post by Jasmine2 Wed Dec 03, 2014 8:42 pm

Very good advice from Tigerlily, Amanda; I agree. I'm so sorry you're still struggling with all this. I think we've seen previously that FP is very careful about professional courtesies and my feeling is that his response may have been a bit different had your endo not been a colleague, as such. I still really do go along with the theory of FHH coexisting with pHPT, even if it is extremely rare, and that would have been my battle cry had I tested positive for FHH too. Stick at it, don't give up, be heartened by Tigerlily's success with all the odds stacked against finding someone to take her seriously, she just kept persevering and researching, building a case to make her case, so to speak, and her sheer doggedness and tenacity finally paid off.

Love and hugs

Jasmine x
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Post by Little Audrey Wed Dec 03, 2014 10:16 pm

Amanda, I would like to remind you and everyone else that a negative scan does NOT mean there is not an adenoma hiding in there! I'm sure you all know that I had a negative scan the morning of surgery. A few minutes later I had 2 adenomas removed! I agree with everyone else. You can NEVER give up! We've all had to fight battles to get where we needed to be. We can NEVER give up! I've got everything crossed that something will show on the scans, but, if not, don't be discouraged! rendeer rendeer rendeer rendeer rendeer Here are some reindeer for you too!

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Post by Tigerlily Wed Dec 03, 2014 10:56 pm

Thanks, Amanda - it was you suggesting that I could cling to the hope of a cancellation that kept me going over the weekend. As it was, the lady who cancelled was more than happy to take my 29 Jan slot as it suited her better. It couldn't have been more convenient for both of us really!

I know what you mean totally about having to recover from the knock-back. We seem to have to take so many of those on the chins (!) with these problems. But it can be so wearing when we don't feel so good.

I'm with Jasmine about having co-existing pHPT and FHH - however unusual, it is obvs not unheard of, as a number of us have come across papers which reveal it as a possibility.

Get the ferritin up, all those chins up, and then go and look up some people who might be able to help you.

Lots of love and hugs from Tigerlily xxxx

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Post by Kathi209 Thu Dec 04, 2014 4:24 am

Amanda I do really hope you can get some answers. I have read about phpt and Fhh co-existing. If I can find some sites again I'll post the link. Big hug to you.    Kathi

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Post by Amanda Lynne Fri Dec 05, 2014 6:56 am

Thanks Ladies I appreciate your thoughts. I have my ferritin infusion booked in for next Friday, I'm having a new one which only takes a short time, I hope I don't have a reaction, the last one I had Cosmofer gave me a horrible itchy rash and stomach pains. This is Ferinject, I would have been happier having Venofer but it takes most of the day and the ward is the Chemo ward and they are obviously ridiculously busy all the time and wouldn't be able to fit me in until after Christmas, as my iron is 14 and dropping I didn't want to wait until it's non-existent to get it topped up and feel worse over Christmas.
Amanda Xxxx
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Post by Tigerlily Fri Dec 05, 2014 10:44 am

Good plan, Amanda - you'll have more energy to get back on the horse again when your iron is tip-top.
Off to the Hammers today for my pre-op checks. Long way to go from here, but must be done.

Back later - Love Tigerlily xxxx

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Post by Amanda Lynne Fri Dec 05, 2014 12:42 pm

Good luck with your pre-op checks hope all goes well, not the best place to go to this near Christmas (whoops sorry I said the C word)
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Post by Lucycatnaps Fri Dec 05, 2014 10:18 pm

Hi Amanda
I am so pleased that you are being referred to a geneticist and that hopefully they may have some answers for you.  It has been almost a month since my blood test for FHH was done and it feels like forever.  I    have a couple of ok days and then wham am back down in the doldrums, especially when its cold, wet and damp and dark so early. There is a lot to be said for hibernation! You must feel it more especially with that low an iron so I hope when you get your next infusion it will make you feel somewhat better.  I have my gastroscopy next Friday too!  When will you get the official scan reports??  I hope they don't keep you waiting too long.  
Hugs again, Sue
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Post by Amanda Lynne Sat Dec 06, 2014 10:55 am

Hi Sue
Yes waiting for FHH results seem to take forever and I think I knew deep down what they were going to say, I would bet my gorgeous not so new John Lewis lamps on you not having FHH it's too much of a coincidence for two of us to have it and the odds are now one of us on here does you probably won't. I'm keeping all my fingers toes and legs X'd that it will come back negative. I hope your Gastroscopy goes fine on Friday, I've had one and I'd recommend the sedation to relax you, I've had that twice and it really does work, you don't remember a thing.
Yes I think the iron is making me feel even more tired that usual, I didn't think that was possible. It's not as low as it does get sometimes, I've had it down to 3 before and boy did I feel bad but I can feel the tiredness getting worse. I actually fell asleep the other day at the computer doing paperwork, it was only when my head did a massive jolt downwards that woke me up, I know VAT is boring but that's just silly. I'm feeling shattered this morning, we went to a friends party for their newly renovated house (our company did all the work on it and it was lovely seeing lots of people ooooing and aaaaahing at how lovely the house looked now) but it was a late one and although I only had one glass of wine, I feel like I've been partying and drinking all night.pale
The weather has turned very cold now and it's all white and frosty this morning which looks lovely but those dark dull wet days are miserable and do make you feel very down.
I presume I won't get scan results until 15/1/15 but if I really thought there would be anything showing up I'd be emailing Endo now, also I think she would contact me if anything positive was on there.
Love and hugs Amanda xxxx
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Post by NancyMi Mon Dec 08, 2014 12:23 am

Amanda,
    I hope you will feel better after the iron treatment. 
So glad you had a scan.  I have heard many times, that a diagnosis was made and then later it was found to be wrong.  
    We've got the same kind of weather over here.  Maybe it's a little colder.  At least this year we're not up against a heavy snow fall like we were last year.  Driving was so difficult last year. 
     Hope you will be feeling better after your iron level goes up.

I am still struggling.  I had the mega lump removed in May and my symptoms did improve quite a bit but as of about 6 weeks ago, I again am feeling frazzled, weak, anxious and somewhat down. I know it's the pth doing it to me.  The last level that was done in Sept showed an 88.
   
    Thinking of you,
   xoxo,  Nancy

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Post by Little Audrey Mon Dec 08, 2014 12:50 am

I too hope that getting the iron up helps you to feel better, Amanda. I am always very thankful for any improvement at all. I'm sure we all are! When you have so many different issues and symptoms, any improvement is great!

Nancy, I'm sorry you're still having problems too. You mentioned that your PTH was 88 at last check. Would you mind posting your calcium level at that time? I'm just curious to know what it was.

I sure miss being healthy. Anybody else?

Audrey

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Post by NancyMi Tue Dec 09, 2014 2:00 am

Hi Audrey.  It was a 10.0  

I feel I should not be at work.  I have had muscle weakness since 2009.   It is hard in a way to control the syringes.  I don't think anyone who has not experienced this does not know what it can do to the body.  I may have to just retire.  At least I have made it this far.

I am supposed to have another mibi soon. 

I hope you are feeling some better after your surgery.

Nancy

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Post by Lucycatnaps Wed Dec 10, 2014 6:58 pm

Hi Nancy,
I am so sorry that you are still feeling unwell,  it must wear you down and be so disheartening and I know I could not hold down a full time job anymore, I would be a liability.  How often are they monitoring your bloods and do they think it is another adenoma?
Thinking of you, Sue x
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Post by Amanda Lynne Fri Dec 12, 2014 11:36 am

Hi All
Having fun this morning.......Not...... 
Got to hospital for iron infusion, and was told even though my ferritin was low, now down to 8 they didn't want to do it as my haemaglobin was ok. They were going to send me home, I told them it's always been this way before and has only been low once and that was when my ferritin was down to 3. I'd sent hubby home as I thought I'd be at least 3-5 hrs. When they told me I was going home I told him to come back (1/2 hr drive) then they read Consultants letter and they decided to do it. Im having it now and have sent Hubby home again, what a pain. 
Amanda xxxx
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Post by Brigitte0 Fri Dec 12, 2014 12:39 pm

Typical hospital decisions. Bet your husband was chuffed as well (not). And there was me thinking you'd have a calm, boring time replenishing your energy levels! Take care and hope it all goes well now. 

Love and hugs 

Brigitte xxxx
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Post by Amanda Lynne Fri Dec 12, 2014 4:18 pm

Hi Brigitte
Yes typical cockup (if I can say that)whoops I just did. However it eventually got sorted I'm back home and feel a little better already, so I've just done the bathrooms and got the Christmas decorations down from the loft ready to do battle tomorrow. I'm shattered now but it's done. While Hubby was wasting time back n forth to hospital (he dropped me as the parking is atrocious) he picked up the trees and sorted out the stands, amazing no prompting or anything affraidsantarendeer
Hopefully I'll wake up feeling the effects of the iron boost tomorrow.
Love Amanda xxxx
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Post by Lucycatnaps Sat Dec 13, 2014 8:02 pm

Hi Amanda,
I lost my post somehow but the jist was hope you feel all charged up and infused with energy, cannot understwnd why they fiddle faddle around so much especially as they knew you were coming and surely the blood was already cross matched etc?  I hope it was a good vintage anyway.
Hugs Sue x
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Post by Amanda Lynne Sat Dec 13, 2014 11:23 pm

Hi Sue
Yes I do feel better, my reflux has improved as well, it always gets really bad when my iron is low, I don't know why it's connected.
I just got the porn site come up when I logged into forum !!!!!!!! affraid
I wasn't tempted looked quite scary. 
Love Amanda
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Post by NancyMi Sun Dec 14, 2014 12:31 am

Amanda,
      Glad you are feeling some better after the iron infusion. 
You did not have to get blood did you? 

What a chore.  Sorry you had to wait some at the hospital and your husband had to come back,  but glad thy finally gave you the infusion. 

Hope you are feeling better everyday.

xoxo,  Nancy

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Post by NancyMi Sun Dec 14, 2014 12:38 am

Hi Sue,
      I haven't had anymore blood since sept.   I am supposed to go this week for another mibi.  I dislike getting all this radiation but if it shows anything I guess it will be worth it.
       Personally, I believe I had 2 glands high in the neck.  One was removed last May and that helped but I believe there is another one opposite where the one was found in May.
      It is too hard working everyday.  I have asked for a leave and then if I have surgery, I will retire after that. 
       The person that processes the paper work does not follow the governmental rules.  He is supposed to process it in a certain length of time.
     Thank you for asking.

Nancy

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