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Saying hi to everyone in the UK

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Saying hi to everyone in the UK

Post by NancyMi on Sat Apr 05, 2014 12:47 am

Hello,
Tigerlily, Amanda L, Jasmine, Audrey and all of my friends,
Just saying hi and apologizing for not posting. I have been thinking of all of you.

Just wanted to update.
My name is Nancy and I am from Michigan in the states. Michigan is right next door to Windsor Ontario Canada. I have been dealing with parathyroid disease since 2009. At least that is when I can identify the occurrence of many of my symptoms. Maybe the problem may have started years prior to that.

I had surgery in Dec of 2012 and the surgeon removed 3 1/2 glands. After reading the pathology report and having a recurrence of the symptoms very soon after surgery, I believed that 3 1/2 glands were not removed. I never reached a point where I had to supplement with calcium. I believe it's because the offending gland is not gone but still pulling calcium out of my bones. As of Dec 2013 the PTH was 144 and the calcium was 9.6  Shocked 

Well it has been so hard to try to go to work and function feeling like this.

I am going to try again to get help. I do not believe at this time, that I will go back to the hospital where the surgery was done before.

So glad all of you created this forum.  Smile 

Sincerely,
Nancy  


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Re: Saying hi to everyone in the UK

Post by Little Audrey on Sat Apr 05, 2014 1:39 am

Nancy, it is SO nice to have you join us here!! I was just about to email you to make sure you knew we were here. I am so happy you found us!

It sounds like you're still struggling terribly with this disease. I am so sorry to hear that. Yes, if your PTH is 144, and your calcium is 9.6, I'd say you need more parathyroid surgery. When all of my symptoms got really bad 3-1/2 years ago, my calcium was 9.8 and PTH was 112. There is definitely a problem with your remaining gland or glands. I sure do hope you get some help soon. You have suffered so darned much! Good luck, and please keep us posted on your progress.

Again, glad you joined us!!

Audrey

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Re: Saying hi to everyone in the UK

Post by Jasmine2 on Sat Apr 05, 2014 8:01 am

Hey Nancy, great to have you with us...... welcome aboard our fab new forum!  sunny
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Re: Saying hi to everyone in the UK

Post by Amanda Lynne on Sat Apr 05, 2014 8:47 am

Hi Nancy lovely to hear from you, hope you get the help you need and all you old friends are here to support you.
Amanda xxxx
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Re: Saying hi to everyone in the UK

Post by Hadleigh on Sat Apr 05, 2014 9:03 am

Hi Nancy welcome to the forum

So glad you found us but sorry to hear you are still struggling, hopefully you will make some progress very soon  Smile 

Take care

Nelly
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Re: Saying hi to everyone in the UK

Post by NancyMi on Sat Apr 05, 2014 4:33 pm

Thanks Audrey,
I got an e-mail from Tigerlily about this forum.

Glad to see everyone is here on the new forum.

Nancy

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Re: Saying hi to everyone in the UK

Post by NancyMi on Sat Apr 05, 2014 4:36 pm

Amanda and Jasmine,
So glad to see you are here and so nice to get your words of encouragement.

This disease can be a struggle and having people that understand is so valuable.

Thank you,
Nancy

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Re: Saying hi to everyone in the UK

Post by NancyMi on Sat Apr 05, 2014 4:44 pm

Jasmine,
I hope all your levels are good. I see you are going to let us know after going to your practitioner. Just hoping your second procedure took care of anything that was abnormal.

Nancy

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Re: Saying hi to everyone in the UK

Post by Tigerlily on Tue Apr 08, 2014 12:20 am

Lovely to have you here with us all, Nancy.

Love from Tigerlily xx

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Re: Saying hi to everyone in the UK

Post by Kathi209 on Tue Apr 08, 2014 1:57 am

Nancy  Have you had a scan done in the chest area? It could be a ectopic parathyroid hiding in your chest. Pth of 144 yikes Shocked  Glad to see you on the new forum.  Tigerlily glad you are on here also.

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Re: Saying hi to everyone in the UK

Post by Tigerlily on Tue Apr 08, 2014 11:03 pm

Thanks, Kathi, good for us all to be back together supporting each other.
I need to post on progress soon (not much further forward, really), but am back at the hospital for a re-scan of my ovarian cyst tomorrow, so will get myself in gear again after that is over.

Love to all, Tigerlily xx

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Re: Saying hi to everyone in the UK

Post by Little Audrey on Tue Apr 08, 2014 11:11 pm

Yes, it is great that we can all be together again and have hope that we can continue our journeys together.

Good luck with the scan tomorrow, Tigerlily!

Audrey

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Re: Saying hi to everyone in the UK

Post by NancyMi on Wed Apr 09, 2014 3:31 am

Kathi,
      I had a sestimibi in Jan that they said covered from the head to the mid chest.  They say they did not see anything.  I am wondering if a parathyroid adenoma could be mistaken for a salivary gland.   With the parathyroid level at 144 I am not feeling well at all.  I have a constant day to day feeling of being sick.  It might be compared to coming down with the flu and also I feel anxiety with it.   It is not a good feeling at all.

Nancy

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Re: Saying hi to everyone in the UK

Post by NancyMi on Wed Apr 09, 2014 3:33 am

Tigerlily,
     Hoping your scan was good.

Nancy

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Re: Saying hi to everyone in the UK

Post by Little Audrey on Wed Apr 09, 2014 3:40 am

Nancy, I sure wish there was something we could suggest or do to help you.    You have suffered so badly for so long!    I bet Dr. Norman  would help you.    With a parathyroid hormone of 144, unless your calcium is hitting rock bottom, what else could the doctors possibly think is wrong?!     I really don't understand why this is so difficult for doctors to diagnose!    

Do you still have that lump on your neck?    If so, I don't understand why that is so hard to take care of either.   I just don't get it.   

Audrey

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Re: Saying hi to everyone in the UK

Post by Jasmine2 on Wed Apr 09, 2014 7:59 am

@NancyMi wrote:I have a constant day to day feeling of being sick.  It might be compared to coming down with the flu 

Nancy, when I was going back and forth to the GP, pre diagnosis, I kept saying those exact words to him, that I felt constantly ill, like I had permanent flu......

What is wrong with these people, why can't they accept what's staring them in the face .....?  Hope you soon get some positive action Nancy, it's outrageous that you've had to suffer so much, and for so long.

Jasmine x
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Re: Saying hi to everyone in the UK

Post by NancyMi on Fri May 02, 2014 12:48 am

Hi Audrey,
   How are you?  I hope good.
I went to see a new surgeon today and he said he would do a needle biopsy of the lump.  He thinks it is a lymph node but it is huge in my opinion.  Did you see the post I put on about the poor 16 yr old with a visible lump in her neck which turned out to be an adenoma.  She also had pancreatits and was very sick.  She had an adenoma which was 11 cm in size.   A woman's cervix has to dilate to 10 cm to be able to delivery a baby through the cervix.

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Re: Saying hi to everyone in the UK

Post by NancyMi on Fri May 02, 2014 12:50 am

Jasmine,
     Thank you so much and I have to agree with you.  I told my daughter today that I think no one that I have been to has ever encountered this, the lump that is.  I don't think they knew what they were looking at.
      A PTH of 144 has to be coming from somewhere. This sick feeling is horrible. 

Do you feel any better.  I hope so.

Nancy

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Re: Saying hi to everyone in the UK

Post by NancyMi on Fri May 02, 2014 12:52 am

So nice to hear from you Amanda.

How are you feeling?

Thinking of you.  ((hugs))

  Nancy

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Re: Saying hi to everyone in the UK

Post by Little Audrey on Fri May 02, 2014 1:14 am

Hi Nancy,

I don't recall seeing the post about the 16-year-old girl. Oh, my goodness! That is awful! I have seen pictures of that lump on your neck, and I wouldn't be surprised if they pull something like that from you when you finally have surgery!

I am VERY happy somebody is going to biopsy that thing! It's about darned time!! I can only imagine how sick and frustrated you are! I would be so depressed by this time too. Yes, what do they think could be causing the elevated PTH of 144? Maybe your appendix? I'm sorry, this really infuriates me!! How could any doctor watch someone suffering like that and not want to try to figure out what is causing it?!

I really am very happy you are finally getting somewhere with this! Hang in there. Your time of healing and feeling well again is coming too!

I am still having a LOT of neck pain, upper arm pain and stiffness, thigh stiffness, heel pain, toe joint pain, and pain on the bottoms of my feet. My massage therapist told me she can feel that the muscles on the bottoms of my feet are very inflamed and tight. If I could get rid of all of this pain, I would be doing great! Well, except for the nonstop twitches in my lower legs now. I still get twitches intermittently every day in my eyelids and face and in my upper arms, inner knees, thighs, sides, and stomach, but they are so infrequent now, they don't really bother me. I still have trouble with exhaustion, but I am sleeping a little better since surgery. I no longer wake up every hour during the night. I can sleep for 2 or 3 hours at a stretch. Still can only sleep for 5 hours total, but I'm not complaining! I still have quite a bit of tendon pain, but I am walking better now, so I'm not complaining about that either. It's still very hard to stand still though. For several days now, I'm having trouble with blurred vision in my left eye. It's like clouds keep moving across the eyeball. I am really thinking some of these symptoms are being caused by the hypothyroidism. I just increased my meds again yesterday. I hope this works. I just read on a forum yesterday that itchy, peeling ear canals is another symptom of hypothyroidism, and I've been dealing with this for a couple of years now. It's very intense, nonstop itching, and when I scratch in there, chunks of skin come out. Very gross, I know. So, I'm still suffering, but some symptoms are gone now, so I'm in a much better place than I was 6 months ago.  Smile  I am very grateful for that!

Please keep us posted on that biopsy. When are you going to have it done?

Audrey

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Re: Saying hi to everyone in the UK

Post by Amanda Lynne on Fri May 02, 2014 6:22 am

Hi Nancy
I'm so pleased that you are getting that biopsy it's about time your PTH levels are ridiculous they must sort you out soon, no wonder you feel awful.
I'm not too good right now, I have really bad back, neck and head pain, I think it because my muscles have gone into spasms and are all rock hard. I think I will have to see my GP today to see if there's anything they can give me to ease it off, my head hurts so bad I can't think straight.
Hugs back to you to.
A xxxx
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Re: Saying hi to everyone in the UK

Post by Lucycatnaps on Fri May 02, 2014 9:17 am

Hi Amanda,
I really wish I knew what would help, I too get the most horrible head pain every so often and I know how debilitating it is.  I always thought it was meno hormone swings as they last 2 to 3 days and taking ibuprofen just takes the edge off but does not make it go.  Often mine wakes me up around 5 a.m.   I find the best thing is to rest with a cool compress on my head but again that is not always possible when life gets in the way.  I often get the pain in the back of my head behind my ear, the mastoid area a well as temporal areas.   Good luck with the docs today and hugs.
Sue
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Re: Saying hi to everyone in the UK

Post by Amanda Lynne on Fri May 02, 2014 9:50 am

Hi Sue 
I've just rung them and have to wait for doc to ring back to see if unwell enough to warrant an appt !!!!!
I've had it for about 2 wks now it's like a dull thumping migraine, I think it's because my muscles have all tightened up. Chiropractor said they are solid all surrounding my spine and below my head, so I guess it's all pulling and pressing on nerves. My neck joints are creaking and popping a lot.
I think it's PTH connected, I've had a couple of episodes over the last few years but usuall with chiro, excersises a bit of ibuforfen gel (can't use tablets due to reflux) and paracetamol I can ease it off enough to get by.
I've also got some mouth ulcers and a sore tongue so I'm feeling very sorry for myself.
I have work to do on computer but that just makes me feel rough.
Sorry for my moaning  Rolling Eyes 
Thanks for being there and listening Xxx
Amanda xxxx
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