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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 Little Audrey on Thu Feb 05, 2015 1:01 am

Thank you, ladies. Yes, it seems we just keep getting knocked down time after time after time. It does get old, doesn't it? Would be nice to get back up and STAY up for a while! I like the Weeble analogy, Amanda. Yes, that is exactly what we resemble!!

You're quite welcome for the post-op lab results, Tigerlily. I knew you were worrying about yours. I remember doing the same thing for several months after my surgery. Very scary!!

I do have part of my new lab results in. I was waiting for the rest to come in before I posted anything. Unfortunately, the hospital's patient portal has been unavailable since Sunday!! Yesterday I emailed one of the girls who runs it. She told me they are having a little technical difficulty. She suggested I try again last night. I did. It still was not working. I just tried again, and it STILL isn't working! If it is not working by tomorrow, I am going to email the girl again, and I am going to call the hospital to see if any more results are in. If they are, I am going to run over the the hospital to pick them up. I did request to have the results mailed to my house, but that would take a couple of more days IF the results are in, and I don't want to wait! I am not a patient person when it comes to waiting for test results. Smile

Amanda, how are the eyes doing?

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Re: Update On My Health

Post by Amanda Lynne on Thu Feb 05, 2015 12:23 pm

Hi Audrey
Hope your results come in soon. My eyes are slightly better, I was hoping for a quicker recovery but as I have to use the drops for a month I suppose an overnight cure was too much to expect.
Love Amanda xxxx
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Re: Update On My Health

Post by NancyMi on Fri Feb 06, 2015 2:08 pm

Glad you are experiencing some improvement in the irritation.  I hope that everyday they are feeling better. 

How was your daughters birthday?  That was a milestone, 21.  

Just wishing the drops all of sudden bring you huge relief.  Maybe it is just going to take another few days. 

xxx,  Nancy

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Re: Update On My Health

Post by Little Audrey on Fri Feb 06, 2015 2:17 pm

Thanks, Amanda. I just called the hospital. My results are all in. I will be stopping over there to get a copy today. The patient portal is STILL not working, or I could just view them that way.

I'm VERY glad your eyes are feeling a little better. It would be nicer if they were feeling a LOT better, but if you're like me, I take what I can get and be thankful. I hope they are back to normal for you very soon!!

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Re: Update On My Health

Post by Lucycatnaps on Fri Feb 06, 2015 2:37 pm

Hi Amanda,
Hope you get some answers from your eye appointment today and that they can figure out what is causing it.  Am supposed to be packing but just wanted to say good luck with it.
Hugs Sue
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Re: Update On My Health

Post by Tigerlily on Fri Feb 06, 2015 5:25 pm

Sue - can't remember where you're going - is it to do with the daughter's wedding?
I hope you have a great trip and a wonderful time!

Love from Tigerlily xxxx

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Re: Update On My Health

Post by Amanda Lynne on Fri Feb 06, 2015 7:00 pm

Hi All
Saw community ophthalmologist today he said he didn't understand why I had been given the drops I had !!!!! He said they were for internal eye inflamation and that's not what I had. That they were too strong, like trying to crack an egg with a sledgehammer !!! Now I have to wean myself off of them gradually over 4 days and he said the inflamation should be just about gone and just to use tear replacement drops to keep lubricated !!!!
I could get really angry about this but I'm going to just let it go I have too many other things to worry about.
I have Rheumy appt on Monday morning to see about autoimmune problems, the opthalmologist says there are several which can cause eye problems and could possibly be flared up by ferritin infusion !!
My Daughters Birthday was lovely and we had a fantastic meal all together. She's going out with all her friends next weekend. 
Sue I hope you have a wonderful time at your Son's Wedding and keep as well as you can, enjoy every minute of it.
Lots of love Amanda xxxx
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Re: Update On My Health

Post by Tigerlily on Fri Feb 06, 2015 7:27 pm

God, Amanda - who are these people? Jeez .....
But you're right, just let it go and concentrate on the other matters.

So glad your daughter's birthday went well. Happy Days, eh?

(Ah, it's Sue son's wedding - keep getting the sons and daughters muxed ip!)

Love and Hugs to both you and Sue, from Tigerlily xxxx

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Re: Update On My Health

Post by Hadleigh on Sat Feb 07, 2015 11:33 am

Amanda if they are checking autoimmune problems make sure they do thyroid antibodies as you could have thyroid eye disease, you can get this with both over an underactive thyroid and on its own. It sounds like your symptoms are very similar, steroids are used for that.

Nelly
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Re: Update On My Health

Post by Amanda Lynne on Sat Feb 07, 2015 1:30 pm

Thanks Nelly 
As usual I'm back in the land of now knowing what's wrong with me, I have a feeling Rheumy will try to get me to have steroid injection before even diagnosing what is causing my eye problems and sore abdominal pain which is there all the time and can go up into kidney area. Opthalmologist queried Chrons as I'd had vasculitis on bowel when appendectomy was done 18/19 yrs ago and the fact that no one seems to know why I my iron stores keep dropping, so that's a question I need to ask as well. 
In my mind it would be wrong to give me steroids just guessing there maybe autoimmune problem without testing first as it would then mask any results that may show what the problem is. I may well have another fight on my hands as last two times he's been itching to get the syringe out !!!!
I have however got a Dexa appointment on Friday, I was told November/December at Endo appt at least it will be good to find out if Pth surgery has helped osteopenia or is something else causing that.
Love Amanda xxxx
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Re: Update On My Health

Post by Hadleigh on Sat Feb 07, 2015 1:57 pm

I'm in that not knowing club as well Amanda, been there most of my life Neutral

I really feel I can't be bothered with seeing anymore doctors, no point when they can't diagnose anything properly.

Edwin had an iron infusion last Tues and he's not too chirpy, may be a reaction or not, don't know and neither do the docs.

Nelly
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Re: Update On My Health

Post by Amanda Lynne on Sat Feb 07, 2015 2:30 pm

Hi Nelly
I'm with you about seeing dr's I don't have any faith in any of them, I go into the appointment with some hope and come out feeling like I have just wasted my time.
I'm sorry Edwin doesn't feel too good, which infusion did he have ?
If he had the ferinject (it's a new one they seem to be trying on most people !) I'm sure that's what has cocked up my system and caused a flare of something. I also spoke to Simon about it as I know he has regular infusions because of chronic bowel disease, he had the same one and was made very ill by it, his phosphates dropped completely and he said it felt like he was going to die !!!!
He got bloods done and took supplements and now feels much better. I hope Edwin didn't have this as well, I think the USA haven't approved it because of problems !!!
Give him my love and I hope he feels better soon, how are you feeling now ? Do you have to go back to Endo soon ? 
Love Amanda xxxx
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Re: Update On My Health

Post by Amanda Lynne on Mon Feb 09, 2015 1:01 pm

Saw Rheumy today re sore eyes and abdominal pain he thinks the Ferritin infusion has caused an inflammatory reaction which will probably last 3 months : ( .
I can't take anything that will help I will just have to wait and hope it goes. I have had bloods done to check inflammatory markers to see if anything else shows.
A XXXX
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Re: Update On My Health

Post by Hadleigh on Mon Feb 09, 2015 1:39 pm

Sorry Amanda only just seen your post, we had a crazy weekend.

Had to take Edwin to A&E on Friday after he collapsed 3 times ! They kept him in for 24 hours but didn't find a cause. I think the combination of the infusion (Monofer ) plus his regular EPO injection could be to blame. More tests this week and a driving ban until given thee ok.

I have been reading up on infusions and there seem to be quite a few possible problems that can happen, bit iffy.

I had bloods done this morning and also started bp pills Neutral seeing GP again on Thurs. I have no plans to see Endotwat again, she and I aren't on the same page
anymore  Rolling Eyes

I hope your inflammation dies down sooner than 3 months, that's too long to be having added symptoms.

Well I'm chief taxi driver and dog walker for now so I had better get my wellies on, at least its bright and sunny sunny

Take care
Nelly
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Re: Update On My Health

Post by Tigerlily on Mon Feb 09, 2015 1:53 pm

Love to Edwin for a fast recovery, Nelly - and take care of yourself as well.

Enjoy a bit of sunshine - Love from Tigerlily xxxx

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Re: Update On My Health

Post by Amanda Lynne on Mon Feb 09, 2015 1:53 pm

Oh no poor Edwin that must have been very scary. I hope he is feeling much better now.
Monofer was the one I had twice prior to the ferinject and after the first one I had very bad reflux and a rash over neck and chest for 3 months, saw GP but never put it down to infusion so had it again 6 MTH's later and same happened again !! That was why I said I didn't want it again and they wouldn't give me Venofer or cosmofer because they said they didn't have time and they took too long ! I'd never had a reaction with them.

I hope you are all ok on the BP meds and it lowers it so you can have the stones zapped. It's sunny here too and not too cold, have fun with the dogs.

I hope the inflamation goes quicker too, feel like poop at the moment but hey what's new. Take care and give Edwin all my best wishes hope the tests go ok.
Love Amanda xxxx
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Re: Update On My Health

Post by Jasmine2 on Mon Feb 09, 2015 6:38 pm

Oh gosh, so sorry to hear that about Edwin. Hope you're soon feeling much better, Edwin. Nelly, you'll be getting plenty of extra Vit D then with doggy walks in the winter sunshine! That's what I'm enjoying at the moment.

Amanda - boo hiss! Yet more to contend with ......! As Nelly said, sincerely hope you don't have to wait three months to get some relief What a Face for goodness sake, it's your turn to catch a break already .......

Jasmine x
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Re: Update On My Health

Post by Amanda Lynne on Wed Feb 11, 2015 3:43 pm

I've just come back from GP as having really bad abdominal pain radiating around to back, had it 2 1/2 wks today it's got worse, seems I now have a urinary tract infection and possible pelvic infection.
I now think I should just be put down !!!!!
What else can I get, didn't see that one coming, wonder if it has anything to do with ferritin and autoimmune response.
Sorry if my news is not PTH based anymore, you can always tell me to bog off if you like. No
Amanda xxx
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Re: Update On My Health

Post by Tigerlily on Wed Feb 11, 2015 3:56 pm

Noooooo! Amanda - don't go! You are a founder member here and we don't want to lose you.

So sorry to hear of this. Audrey used to have frequent UTI's. She may have some tips to help. And it may all still be PTH related so do keep us posted on progress.

Eyes and kidneys are related somehow (can't really remember why, need to research that again). I think it's Chinese Medicine that links them. People with dark rings around their eyes often have kidney problems apparently.

But this may be more like a reaction to the new ferritin infusion. Whatever was in it will need to be excreted via the kidneys at some point, I should think.

I hope Audrey will chip in with some tips to ease the pain for you. And Simon may have some input as well.

Sending Much Love and Hugs - Tigerlily xxxx

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Re: Update On My Health

Post by Amanda Lynne on Wed Feb 11, 2015 4:09 pm

Thanks Tigerlily
I'm grateful for your help, I'm feeling a bit like a disaster zone atm, yes I have a feeling theirs a connection between kidneys and eyes and some sort of inflammatory disease. I'm going to ring Rheumy's secretary as soon as I get correct results from lab back from dr's.
I would really like just a short spell of not getting a b****y new problem every week.
Thanks for your understanding.
Love Amanda xxxx
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Re: Update On My Health

Post by Tigerlily on Wed Feb 11, 2015 4:27 pm

Bless you, Amanda. I really feel for you with all you've been through.

Good idea to run it past the Rheumy - I've had more help from a local one than anyone else and I've never even met him! (He was the one who wrote back to my GP after the GP had asked him for his opinion and told said GP that I surely had pHPT.)

Don't leave us, Amanda. In my dreams, I'm keeping a seat warm for you at The Ritz and I'll look a right nit if you don't turn up!

Love from Tigerlily xxxx

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Re: Update On My Health

Post by Amanda Lynne on Wed Feb 11, 2015 4:33 pm

I'll be right by your side, love the Ritz and it's about time we had a treat.
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Re: Update On My Health

Post by Tigerlily on Wed Feb 11, 2015 4:40 pm

Yes - we don't really have to wait until we're fixed, do we? There might not be enough time for that!!

I vote we think about having a pre-fixed Ritz meet soonest! Might have to be afternoon tea - perhaps they do one with champers. I'll check it out.

Love Tigerlily xxxx

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Re: Update On My Health

Post by Amanda Lynne on Wed Feb 11, 2015 4:49 pm

Oh yes they definitely do. Doubt if I'll ever be fixed, just patched up and working would do me for now !!!!!
Love Amanda xxxx
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Re: Update On My Health

Post by Jasmine2 on Wed Feb 11, 2015 8:06 pm

'
Yessssss! S*d waiting, let's go for it and fix a date ......

J x
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