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Update On My Health

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Update On My Health

Post by Amanda Lynne on Tue Jan 27, 2015 3:18 pm

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Hi All
Just a quick update on what's going on (not brilliant news) after having the new type of ferritin infusion I have been having some troubling sumptoms. I didn't put it down to infusion but it seems increasingly like this may have caused it. 3 days after infusion I started to get sore eyes. I have been back and forth between optician and GP trying out loads of drops antihistamines etc now I have developed an abdominal pain lower right around appendix (I've had this removed but found out it was vasculitis !) I have finally got ophthalmology appt on 6th Feb. I have also today rung Rheumatologist who contacted me back just now. He seems to agree with my diagnosis of an autoimmune flare up ( not had any indication since appendix op to suggest there was an ongoing problem) I think it's either a conjunctivitis which is vasculitis based or episcleritis which is inflammation of front of eye linked to autoimmune problems, the abdominal pain is probably another vasculitis on the bowel. I have an appointment with Rheumy on 9th so hopefully if I get diagnosis from eye appt on Friday before he will be able to start treatment. In the mean time I have had Endo appt basically a waste of time as I'm apparently cured and they will not now check me for another year however I did manage to squeeze a dexa scan from them to be arranged for the end of the year. 
To say I'm fed up is an understatement, it seems that I now have another condition which is now making me feel awful. Constantly sore eyes are horrible and it's making me grumpy and not wanting to go anywhere, not like me sadly.
Sorry this is a pity fest and not really PTH related.
Lots of love Amanda xxxx
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Re: Update On My Health

Post by Admin on Sun Feb 15, 2015 4:14 am

Thank you for this Tigerlily.


I had already planned to raise this on my next renal consultant appointment.

They were not too concerned when the PTH was 24, but my latest PTH was 32, so something is going-on that needs attention.
Just another problem to add to my growing collection of medical 'excitement'.

This weekend's fun was a blue light and siren ride and I now have a temporary pacemaker until Monday or Tuesday when they fit a pacemaker.

Edwin


Last edited by Admin on Sun Feb 15, 2015 4:44 pm; edited 1 time in total
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Re: Update On My Health

Post by Amanda Lynne on Sun Feb 15, 2015 8:13 am

Edwin you have been through so much, sending you all my best wishes that you get your health back on an even keel.
Love Amanda xxxx
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Re: Update On My Health

Post by Tigerlily on Sun Feb 15, 2015 11:35 am

Edwin - you have some fun, don't you?!!

So sorry you have all this to contend with and I do hope it gets resolved by someone doing some joined-up thinking very soon.

Love from Tigerlily xxxx

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Re: Update On My Health

Post by Amanda Lynne on Sun Feb 15, 2015 12:31 pm

Tigerlily perhaps Mr Tigerlily has seen all the PTH fun you've been having and felt left out !!!! affraid
Love Amanda xxxx
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Re: Update On My Health

Post by Tigerlily on Sun Feb 15, 2015 5:19 pm

I think so, Amanda! And I think his poor sister might be next - keeping it in the family, eh?!

Hugs from Tigerlily xxxx

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Re: Update On My Health

Post by Amanda Lynne on Mon Feb 16, 2015 3:33 pm

Poor Tigerlily Family xxx
Got phone call from Rheumy he is making urgent referral to Gastrology said not to bother going through GP.
At least he's doing his job well.
Love Amanda xxxx
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Re: Update On My Health

Post by Tigerlily on Mon Feb 16, 2015 3:48 pm

So glad about the Rheumy being on the ball, Amanda!  I had the most help from a Rheumy. He was the first to diagnose pHPT from all my muscular aches and pains and blood tests.

Might be worth asking for his view of your PTH story when you see him.

Mr T-L and his sister are not even related to me by blood! What a mystery! Will keep you posted.

Love and Hugs, Tigerlily xxxx

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Re: Update On My Health

Post by pilipala on Mon Feb 16, 2015 4:17 pm

Hi Amanda,

I'm pleased you have at least one consultant who's doing something, but I'm not pleased that the other have proved such a shower.

If this is a reaction to the Ferritin injection I really hope they pay attention and work out what's going on. Some joined up thinking would be nice. I really don't understand how a FHH diagnosis gets them off the hook for all your symptoms. I get the impression that once a case becomes too complex for them they'd rather try and pretend you didn't exist, and pass you round the specialities like a hot potato.

Fingers crossed for a unusually brilliant gastro

Love
Dee
xxxx

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Re: Update On My Health

Post by Amanda Lynne on Mon Feb 16, 2015 8:05 pm

Thanks Tigerlily & Dee
I've asked Rheumy about PTH in past but he seems to think Endo should know what they are talking about !!!!
I would be so grateful if one of the Consultants could actually get my health back on an even keel, I'm getting rather tired of being a "hot potato" with FHH.
I have everything X'd that Gastro gets an interest in my case and sorts out what is at the bottom of it all (excuse the pun). I'm not looking forward to the investigations they will no doubt be doing but I'll put up with anything now to get better.
Thanks for your kind comments Ladies.
Amanda xxxx
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Re: Update On My Health

Post by Little Audrey on Fri Feb 20, 2015 3:58 pm

Well, I agree with Tigerlily regarding Edwin's elevated PTH. That should definitely be checked out! That might need to be taken care of soon also. My goodness, what else can go wrong, Edwin?!

And, Tigerlily, sorry to hear about your hubby's elevated calcium! At least you will know how to get him through it all since you've been there yourself. That will be nice for him.

Good luck to everyone!

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Re: Update On My Health

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