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Another newbie

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Another newbie

Post by Lucycatnaps on Sun Mar 30, 2014 7:41 pm

Happy Mothers Day to all mums here and to the fellows a big hello as well. I would first like to say a huge grateful thank you to Nelly for setting up a new forum. I tried registering on the old forum but I could only read and not post. I found it a mine of invaluable information and learnt such a lot as I really am just at the beginning of the road with all this. I felt a bit like someone peeking in through the windows and waving madly at you all. I'm 58 and I live in Lincolnshire near the Wash with my OH and 3 cats . I am hypothyroid, on thyroxine and now it seems I may have Primary HPT as well. I had a hip replacement end of May last year and post op kept feeling incredibly thirsty which I thought was due to the codeine tabs, but was up and running around in no time. By October I had a routine dental appt and was told I had Oral Lichen Planus in my mouth, I also found a swelling on L side of neck and was told it was a lymph node. I was sent to see Oral Max in December and they thought I had a salivary duct blockage but tests did not show stones. I had blocked Eustachian tubes, tinnitus and ear ache so was referred to ENT ( seen them in past for other auto immune stuff) Also had annual rheumy appt and showed him lump on neck so he ordered an U/S. I did some research that said OLP may be linked to low Vit. D and so I started supplementing as by mid Dec my mouth was full of ulcers and very painful. Oral did mouth biopsies plus had an MRI of head and neck to rule out other stones beginning of January. I think the whole of Dec, I got myself in a real panic worrying about the oral lesions and the lump on neck, could not stop shaking and knew I had to wait until the end of Jan for results of biopsies and MRI. I went to see my GP again as I felt really miserable and low, told him all the waiting, terrible thirst and other symptoms were making me feel even worse. He decided to repeat all my bloods which rheumy did in Nov and lo and behold my calcium came back high 2.74 . I then had PTH and calcium done end of Jan, 2.69 calcium and PTH of 67.86. He is sending me to see an endo but its a 3 month wait here so my appt. is not until mid May sigh. The thirst has eased a little but tongue is always dry. I had rep bloods done on 18/03 and calcium now 2.67 but PTH. Is back in normal range of 39.58. My MRI did not show anything abnormal in neck nor did the U/S, neck lump is a reqctive lymph node but I still have it and I do wonder. I am having the stricture explored in mouth on Wed and so am hoping the lump is in actual fact my salivary gland. Am using steroid mouthwash at the mo to try and heal inner cheeks before they go digging in mouth. I saw GP last Friday for blood results and he said my kidneys are not doing so well at the moment so that has set me off in a panic again, am hoping its a blip. I really hope the local endo is sympathetic to surgery! So that is me so far.
Sue in Lincs

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Re: Another newbie

Post by Jasmine2 on Sun Mar 30, 2014 9:08 pm

Hi Sue

Welcome to our new forum! As I said to Jen, so sorry that you couldn't join our old one but thanks to Nelly and her husband we have been thrown a life raft!  Sorry to hear that you have endured so much, and still have a bit of a wait to see the endo.  It might be worth ringing up regularly to see if there have been any cancellations to try and get seen a bit sooner?  Yes, let's hope your endo is one of those who don't adopt a 'wait and watch' approach.  If so, ask your GP to refer you for a second opinion, or even straight to an endocrine surgeon who is sympathetic to the cause.  On the old forum there is a list of recommended experienced parathyroid surgeons who you could ask your GP to refer you to via Choose and Book if you don't mind travelling out of area, as a lot of us do just to get some decent help with this hideous disease.

Keep in touch Sue, let us know how you're getting on.

Jasmine x

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Re: Another newbie

Post by Hadleigh on Sun Mar 30, 2014 9:17 pm

Hi Sue, so glad you have joined us, welcome to this merry group !

Well it has been so busy and we are really happy to see new members signing in. Some of the original members have come on-board and the knowledge they have I'm sure will be very useful.

The forum is still work in progress and we are learning the ropes as we go so bear with us if things go a bit squiffy now and again.

Do post any questions or worries you might have and hopefully someone will jump in with some advice and kind words.

Look forward to chatting more, thanks again for joining the forum, the more the merrier !

Nelly

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Re: Another newbie

Post by Little Audrey on Sun Mar 30, 2014 10:59 pm

Welcome Sue, so glad you were finally able to join us all!

I too am very sorry to hear you've been through so darned much! My goodness! Hopefully, you can find the help you need and be cured before too much longer.

You mentioned you have had problems with mouth ulcers. By chance are you taking any proton pump inhibitors for acid reflux? I was prescribed a PPI for my acid reflux. I started getting white ulcers inside of my lower lip. I would stop the PPI for a few days, and they would clear up. I'd start them again, and more ulcers would appear. I switched to another PPI and still had problems with the ulcers. I stopped taking them altogether a while back, and I no longer have any trouble at all with ulcers! I take an antacid instead now when I have trouble. I was just wondering if this might be your problem?

Audrey

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Re: Another newbie

Post by Lucycatnaps on Mon Mar 31, 2014 10:07 am

Hi Audrey,
It is lovely to meet you and I am so grateful that Nelly has set up this forum, it really does make a huge difference to chat to others who have been through or are going through this awful stuff. My hobby is quilting or used to be, I haven't sewn much recently but I do have a few american buddies I keep in touch with!
I have other auto immune stuff going on which I see a rheumy for, although it has been mild, it seems I attack my own cartilage but so far the only treatment has been NSAIDS. I had an episode of skin rash on both inner wrists about 5 years ago, it lasted 2 years and then resolved by itself. I was told it was psoriasis but I did not believe that and now it has started in my mouth, it is a T cell attack and AI in nature, trouble is the mouth stuff lasts many years longer than the skin version. Stress can trigger it and last year was both physically and mentally stressful. I had a hip replacement last May which to my mind was uneventful and by 2 weeks post op I was feeling fine. They did give us PPI's routinely to cover the high dose of ibuprofens but it was iust for a month. I do suffer from silent GERD and take Gaviscon at times but I found elevating the head of the bed seems to stop it at night. I had problems losing my voice about 6 years ago and ENT diagnosed the acid reflux ,acid was going down my wind pipe and burning the larynx, he said it was inflamed but I think it was caused by anxiety as at the time I did not know what was causing my ear cartilages to be inflamed and had to wait months for appointments. We lost my mil at the end of Aug so that was stressful too, but by September I was feeling a whole lot better, could walk again, menopause related problems seemed to be easing, for once was not anaemic and was ready to restart my life after 10 years of meno misery. Sooo when dentist hit me with the OLP stuff I felt devastated as there was nothing to see at first, then it all erupted, it is like bands of greyish white patches, some turn into inflamed raw patches, I can't eat anything spicy or citrusy and now use a special very mild toothpaste. I have read that low Vit D can be a factor in triggering it. I don't think the dry mouth helps either, my tongue has deep fissures down the sides and I never seem to be able to make it feel comfortable however much I drink, it just seems to go through me. Mornings are the worst and has improved to how it was in Dec/Jan.
I know there are a lot worse things to have but I would not wish this on anyone! Thanks for replying, it truly is appreciated and anything is worth considering if it helps!
With warm quilty hugs,
Sue in Lincs

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Re: Another newbie

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