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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

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 Tigerlily on Tue Jan 27, 2015 7:02 pm

Oh, Amanda - so sorry to hear you are in the wars again. Eye soreness can be a real pain. I hope the two appointments will uncover the cause for you.

Can you check out with anyone if indeed it might be the new type of ferritin infusion that could cause these symptoms? I expect they would want to know about possible side effects as well.

Well done for squeezing a DEXA out of them, though. You're still feisty - I can see that!

Don't worry about Strictly PTH on here. We all want to know how you are with all that you've been through - too much, really, for the human frame to stand. Be kind to yourself for a while and put your feet up. It's such a strain having to organise all these things yourself. I was sitting here wondering where to go now with my 3 hyperplastic adenoma history, secure in the knowledge that I had an endo appointment on Friday this week that might help. Then the bloomin' phone rang and it was the local hospital's android calling to cancel it!! Grrr!

Lots of Love and Hugs from Tigerlily xxxx

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Re: Update On My Health

Post by Admin on Tue Jan 27, 2015 8:31 pm

Hi Amanda

Looking back, you had been wondering if you had a thyroid problem.
Did you reach a conclusion on this?

The reason for asking is that there is something called thyroid eye disease that seems to have some similar symptoms:
http://www.patient.co.uk/health/thyroid-eye-disease-leaflet

Edwin


Last edited by Admin on Tue Jan 27, 2015 9:15 pm; edited 1 time in total
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Re: Update On My Health

Post by Jasmine2 on Tue Jan 27, 2015 8:48 pm

Aww Amanda, as if you haven't been through enough already - jeez, give the girl a break already! Sorry I can't offer any words of advice but I'm thinking of you and sending love and hugs.

Jasmine x
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Re: Update On My Health

Post by Amanda Lynne on Tue Jan 27, 2015 10:31 pm

Hi Tigerlily, Edwin & Jasmine.
Tigerlily I've spoken to haematology they say it can cause reactions but didn't know if they would last too long. Sorry your appointment was canceled I hope you get another one very soon so you can ask all the questions you now need answering. X

Edwin I spoke to Endo when I went on 15 th I questioned Thyroid but was told my levels were fine I am still waiting for copy of bloods, I presume that if thyroid was behind it my levels would be showing a problem ? I'm not sure. I presume that the ophthalmologist will check all of this. My optician didn't mention it, he seemed to think it was inflammation of the front of eye. Thanks for your suggestions I will mention it to Optho.

Jasmine thank you, I hope you are ok how did your appointment go ? 
I must admit I do feel very tearful at the moment but it makes my eyes hurt more so I'm trying not to.

Thank you so much for all your kind words.
Love Amanda xxxx
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Re: Update On My Health

Post by Admin on Tue Jan 27, 2015 11:08 pm

Amanda Lynne wrote:Hi Tigerlily, Edwin & Jasmine.
Edwin I spoke to Endo when I went on 15 th I questioned Thyroid but was told my levels were fine I am still waiting for copy of bloods, I presume that if thyroid was behind it my levels would be showing a problem ? I'm not sure. I presume that the ophthalmologist will check all of this. My optician didn't mention it, he seemed to think it was inflammation of the front of eye. Thanks for your suggestions I will mention it to Optho.

Unfortunately, with thyroid problems, 'fine' levels can be highly misleading and many people do not get diagnosed or cannot get the right treatment because of 'fine' levels.
Let's hope that they checked your FT3 and FT4 and not just TSH.

Edwin
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Re: Update On My Health

Post by Little Audrey on Wed Jan 28, 2015 2:19 am

Oh, my goodness, Amanda, I am so sorry to hear of all of this! You poor thing. Yes, I do think it's time for you to catch a little break!!

As far as the endo helping, it doesn't surprise me that he won't. Mine is pretty much useless. I'd like to see how differently they would think if it were them suffering!

I'm praying that you get some relief from all of these darned issues! Hang in there! It just has to get better for you soon!

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Re: Update On My Health

Post by Amanda Lynne on Wed Jan 28, 2015 7:15 am

Thanks Audrey, yes Edwin they did check both but until I get a copy of the bloods sent through I don't know exactly what they are.
Love Amanda xxxx
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Re: Update On My Health

Post by Lucycatnaps on Wed Jan 28, 2015 4:46 pm

Hi Amanda,
I really feel for you and anyone else going through auto immune problems.  It is such a hard area to get any proper answers especially when it is difficult to find a correct diagnosis, although as with many AI conditions the treatment tends to be steroids to start.  I had episcleritis prior to starting on Thyroxine, it felt like my eye was on fire or a burning bar wedged inside my lower lid.  I also had eye ache on and off and was told it was a dry eye and probably menopause related.  I think it was the result of low thyroid as I had many symptoms, fatigue, plantar fasciitis, could not keep awake and my TSH came back as 15 which is when they put me on Thyroxine, ohh my weight ballooned as well, gained 2 stone in 6 months.  That was 2004  I would ask for Thyroid function tests again.
Hopefully I will get my FHH genetic test result back next week,  I have an appt for next Tuesday.  I rang yesterday to see if it is back yet and Mr P secretary said she will try and find out and ring me.  If it is not back then my appointment will have to be rearranged.  I am feeling pretty stressed especially with this long haul trip on top.  I've just got my last bloods back today
PTH  is 6.1   Ref 1.5 - 6.9
Calcium 2.63 adjusted Ref 2.2 - 2.6
Vit D dropping again , now 61.  i did get it to 79 after 3 month course of D
Take care of yourself and Good Luck with finding some answers
Hugs from Sue
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Re: Update On My Health

Post by Amanda Lynne on Wed Jan 28, 2015 5:56 pm

Hi Sue
Yes that's what both eyes feel like, it's hard to concerntrate on anything else, making working on lap top very difficult. I did have bloods done a couple of wks ago, Endo said all Thyroid levels fine (not that I'd trust them much) they said they would send me copy which I've not recieved as yet.
I'm keeping my fingers X'd that your FHH result comes back negative I'm sure it will. Good luck with your appt.
Your levels look like PTH disease to me but until you get that all clear you can't move on. Thank you for your kind thoughts.
Love Amanda xxxx
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Re: Update On My Health

Post by NancyMi on Thu Jan 29, 2015 1:35 am

Amanda,
      I am sorry your eyes are bothering you.  Don't blame you in the least in feeling fed up.
Would they give you any steroid eye drops if the antihistamine drops don't give you any relief? 

Are your eyes reddened? 

Sending healing thoughts your way.

xxx,  Nancy

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Re: Update On My Health

Post by Amanda Lynne on Thu Jan 29, 2015 6:45 am

Hi Nancy yes my eyes are very red and painful, they won't give me steroid drops until someone diagnosis exactly what the problem is, I'm having a bit of a fight trying to get seen within 2 weeks !!!
Love Amanda xxxx
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Re: Update On My Health

Post by Amanda Lynne on Thu Jan 29, 2015 2:54 pm

I got emergency appt at ophthalmology dept at hospital after seeing GP again, it was like getting blood out of a stone but eventually he saw it my way !!!!!! Shocked
I was only in there for about 3/4 hr and I was diagnosed with severe inflammation and given a prescription for steroid drops and discharged without a follow up. I was told to use them over 2 weeks then reduce dose for further 2 wks. Welllllllll I've looked at the instructions and it says do not use for more than 1 week. Luckily I have an appointment with a community ophthalmology clinic on 6 th so if I'm in any doubt I will keep that appt just to have them checked. I've also got Rheumy appt on 9th so I'll see what he has to say. I'll be so happy to have my old eyes back Very Happy 
It's my daughters 21st next Thursday and we are going out for a meal all together in a lovely restaurant and I really want to be able to wear my contacts so I'm keeping my fingers X'd for that.
Love Amanda xxxx
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Re: Update On My Health

Post by Tigerlily on Thu Jan 29, 2015 4:28 pm

So glad things moved forward for you, Amanda. I can tell how pleased you are to have some relief for your eyes. I do hope the week of using them will do the trick, so you are able to enjoy the celebrations for your daughter. Fingers and paws crossed here for that!

Love and Hugs from Tigerlily xxxx

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Re: Update On My Health

Post by Amanda Lynne on Fri Jan 30, 2015 7:08 am

Hi Tigerlily
I will be so happy if my eyes return to normal very soon. Really sore eyes are about as bad as a permanent headache, it's hard to concerntrate on anything else.
Yes I'm looking forward to next week.
Love Amanda xxxx
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Re: Update On My Health

Post by Lucycatnaps on Fri Jan 30, 2015 2:44 pm

Hi Amanda
Hopefully the steroid eye drops will kick in PDQ and that the inflammation has already started to settle and your eyes are feeling a lot less painful.  I imagine that when you see the rheumies they will do a raft of blood tests and try to fathom out what is happening.  
Wishing your dd a fantastic 21st next week and hope you feel tons better by then.
Hugs Sue
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Re: Update On My Health

Post by Amanda Lynne on Fri Jan 30, 2015 2:53 pm

Thanks Sue
The redness is a bit better already, I think I will have another fight to get any diagnosis from Rheumy but I guess I've done it before !!!!!
Thanks I'm almost excited about Em's 21st as she is.
Love Amanda xxxx
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Re: Update On My Health

Post by NancyMi on Fri Jan 30, 2015 7:44 pm

Glad you are feeling some better. 

I was thinking about your symptoms,  I have had that dull edge type feeling in my lower eyelids too at times.

I am wondering if I am getting enough vit A.  I know vit A has a lot to do with skin and the cornea of the eye.  

Hope you are feeling some positive affects from the iron infusion.

xxx,  Nancy

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Re: Update On My Health

Post by Jasmine2 on Fri Jan 30, 2015 8:05 pm

Oh Amanda, I just can't believe what you're having to go through, it's relentless, one thing after another! And sore eyes are up there with toothache and earache! It's just miserable .......! Sending love and hugs and hoping you get some relief soon.

Jasmine x
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Re: Update On My Health

Post by Amanda Lynne on Fri Jan 30, 2015 11:25 pm

Thanks Nancy & Jasmine
Yes they have been so painful just blinking felt like they were burning and streaming all the time, it's great they are feeling a bit better and I don't look like I've been crying for days, even though some days it feels like I want to.
Life is a bit poop atm but it could be worse and once I can put my lenses back in and put a bit of slap on I'll be ready to take up this new challenge cyclopsShocked
Love Amanda xxxx
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Re: Update On My Health

Post by Jasmine2 on Sat Jan 31, 2015 9:14 am

That's my girl! I can feel those chins starting to lift already - you're a fighter, you'll get through this! But why oh why is it so relentlessly one thing after another - just can't fathom life at times!

Love and hugs

Jasmine x


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Re: Update On My Health

Post by Little Audrey on Sat Jan 31, 2015 5:16 pm

So glad you're getting some relief from the eye issue, Amanda!! Yes, eye issues are awful! My eyeballs ache at times, and I have trouble in the morning with my eyes being so dry and feeling like there is sand under the lids, I actually can't open them some mornings for about 15 or 20 minutes, because it just hurts. My daughter-in-law suffers from recurrent iritis, and I know she is in terrible pain from that. So if your eyes are red and inflamed, I know you are in a lot of pain! I am so happy you got the drops, and I'm very happy the eyes are doing a little better now!

Yes, Jasmine is right, it seems like it's just one thing after another, and sometimes it sure gets annoying, not to mention very painful!!

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Re: Update On My Health

Post by Amanda Lynne on Sat Jan 31, 2015 5:26 pm

Thanks Audrey, it's just something else on a long list of problems and I'm kind of getting fed up with one thing after another but I guess I just have to keep getting back up (like a wheeble) and getting back on with it.
How are you now ? Have you got any more answers ?
Hope your eyes improve its a horrible feeling when your eyes are painful.
Love Amanda xxxx
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Re: Update On My Health

Post by Little Audrey on Sat Jan 31, 2015 6:00 pm

Thanks, Amanda. I guess I'm doing ok. Like everyone else, different issues keep arising. My spine needs looked at now. I'm thinking that will be my next big project. I think surgery might be in order for that issue.

And that itching problem I was speaking of in a different thread, still persists. I, along with both of my cats, are still itching terribly. I thought it might be a mold problem. The guy I called about this, who runs a company who tests air quality in commercial and residential buildings, thinks it is DRY air causing the problem. He suggested we call our furnace guy and get him to check the humidity in the house. The furnace guy was leaving on vacation the day after my hubby called, but he suggested we pick up a gauge in a local store and check the humidity ourselves. He too thinks it is dry air causing all of this. My husband could not find a gauge anywhere, so he just bought a humidifier. He installed it, and it started operating last night. We're still itching terribly, but I'm guessing it will take time for our skin to rehydrate. I'm praying this will solve the problem!

I am still very exhausted all the time. My head still hurts too often. I am still having trouble with the darned edema, even though it is MUCH better since I started taking a multivitamin. My heels still hurt a little, but that is SO much better, I'm not complaining! The tendons in my inner thighs and upper arms still hurt when moved. I still have tingling in my hands. My little toe joints still burn and ache. My nose and ears are still congested all the time. And I'm still dealing with adrenal issues. But, many things have improved since parathyroid surgery, and I a VERY grateful!!! I am very happy to have that issue behind me now! I just keep chugging along like everyone else and tackle one thing at a time, hoping to get closer to that goal of feeling good again! I do think we will all get there eventually!!

I just went for more bloodwork yesterday. I am hoping to see at least some of those results soon on the patient portal. I will post on here when I do.

Onward we go!!

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Re: Update On My Health

Post by Tigerlily on Sat Jan 31, 2015 7:01 pm

Yes, onward, Audrey - I'm right behind you, treading in your footsteps and trying to stay as positive as you are. Bless you and your kitties!

Let us know what the blood tests reveal for you this time, and thanks for posting your post-op bloods on the other thread for me to compare (and panic less about!).

Love from Tigerlily (and cat licks from both Tiger and Lily) xxxx

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