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My Endo visit today

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My Endo visit today Empty My Endo visit today

Post by Brigitte0 Wed May 21, 2014 10:07 pm

Just to put you in the picture, this was my second Endo consultation: this whole thing only really kicked off at my first appointment two months ago, (though there was a long and boring collection of blood tests which started about a year ago to see whether my pth/calcium levels would behave). I've also had sestamibi and ultrasound scans in the last couple of weeks.

It's taken me all day to try and write down what I remember (before I forget it Wink ) but I managed to make sense of it all during my daughter's Kickboxing lesson this evening! You do need a distraction, you know! I arranged all my notes into some order which I can just copy and paste  Smile  The wonders of modern technology can be so useful, when they don't go wrong of course.


These are the salient points then:

The results of the sestamibi scan have not been interpreted (by an expert and I don't know what one of them is called), but it is obvious that there is a large growth on a parathyroid which was also picked up by the ultrasound scan. Therefore it is obvious that I need surgery to remove it. All the parathyroids will be checked during the operation. The surgeon I’m to be referred to has done a lot of parathyroidectomies.


He’s concerned about the Vitamin D deficiency because it cannot be determined how long I've had it and because I've been taking Cod Liver Oil with 100% rda of Vitamin D as a supplement for over 10 years: it could mean that it has been maintaining what my body perceived as a normal level (but was in fact too low) for years.


There is a link between Vitamin D deficiency and long term use of anti-convulsants, (including the one I've been taking for 22 years), but it can’t be proven.


There could be a tenuous link between hyperparathyroidism and the rare multi-system genetic disease that I have which can cause benign tumours to form in vital organs and more rarely can cause endocrine system alterations. So I’m to be referred to Genetic Testing and will have to have further tests for endocrine problems, but most of that went over my head I must admit and I can’t remember much of what was said! There are only 3 recorded cases of Primary Hyperparathyroidism and my disease so he’s very interested in my case. To be fair, he’d done a lot of research into this.


He wants to refer me for a DEXA scan to get a baseline of my bone density now and after the surgery and also because I haven’t been through menopause and the development of osteoporosis for instance, is influenced by the strength of the bones *before* menopause.


There was a lot of talk about the relationship of Vitamin D and Calcium and its differences, most of which I didn't understand, but he said I must continue to take the high dose of Cholecalciferol I’m currently on until they had the results of the blood test today, which will obviously define what my calcium levels are up to.


He asked if he could write a paper on me about the (questionable) link of HPT to my rare disease and/or the relationship of long term use of an anti-epileptic drug and the Vitamin D deficiency! I agreed, after all, why not?! My orthopaedic consultant wrote a paper on me recently about the complicated fracture of my finger and the avulsion of the tendon, including the very intricate operation where he pieced it all back together. Which he also found interesting and wanted to request a copy from the Orthopaedic guy!


I also asked about the joint, bone and muscle pains and whether they were related to my HPT. It could or couldn't be because some of the problems I've had for several years or more, though it may be significant that I got myself a Chiropractor two years ago because I was having so many problems then and felt like I was getting old. I'd also had both carpal tunnels done at a fairly young age and the result of that what that I still had pain in my wrists and fingers and had was getting cartilage problems in my thumbs with what appeared to be the start of arthritis. To be honest, I don't think I could live without my Chiropractor! As for the Plantar Fasciitis in my heels, he thought that was probably not connected. I'm really upset about that as it's probably the most excruciating of my many health problems and I had hoped for a magic fix after the operation  Sad 


There is probably loads more I've forgotten or didn't understand, but my brain was overloaded - it doesn't take much for that to happen Embarassed 

After that I went for the blood test and it was so busy, I had to wait 45 minutes, so I took the opportunity to make notes of what I did remember, which was probably just as well. And then when I did get my turn, my veins had gone AWOL and it took ages, so by the time I got to the car park machine, it had just gone over to the next hour and I had to pay more!!! Evil or Very Mad 

These emoticons are quite fun, aren't they?  What a Face 

So now I wait to be referred for a DEXA scan and to the Surgeon, to Genetic Testing and to anything else that might turn up. Incidentally, he told me I couldn't possibly have FHH (whatever it's called that I've forgotten, Familial HooferDoofer), but that Endocrinologists often look for a link. I think he's quite happy that I've got something even rarer that may have a connection Exclamation 

I've got to stop playing with these emoticons now, tongue 

Love

Brigitte x 


 

 
Brigitte0
Brigitte0

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Post by lozza Wed May 21, 2014 10:20 pm

Hi Brigitte,
Thanks for giving us this update, it does help us all to understand the working of Endos in general. I can imagine all of this has been a lot to take in. Good idea to also get the dexa scan.

Out of interest which hospital are you going too ? try to build up a databases of places to go.

best wishes

Lozza

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Post by Brigitte0 Wed May 21, 2014 10:27 pm

Hi Lozza

Yes a lot to take in!

It's Southampton General, which is a very large teaching hospital serving a very wide area, so I'm probably lucky in that respect.

Love
Brigitte x
Brigitte0
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Post by Kathi209 Wed May 21, 2014 11:05 pm

Hi Brigette
Sorry you are going through a lot it seems. Did he mention MENS. it is also a familial and you would need genetic testing to see if you have it. Good luck to you.

Kathi209

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Post by Little Audrey Thu May 22, 2014 1:37 am

Yes, Brigitte, you do have a lot going on!!   Wow!

I'm not so sure you should be taking the vitamin D if your calcium is high.   It could cause the calcium to go even higher.    

As far as the plantar fasciitis being a symptom or not, many people with HPT suffer from this symptom, including me!     Mine seems to very gradually be resolving.    I have never had this before in my life, until a year ago April.  My doctor tried to tell me it could be from my weight!    Now, if I've never had plantar fasciits before in my life, and at age 60, 2 years after I started getting all of the other symptoms of HPT, I get it in both feet, I would tend to think there might be some connection.     I have heard that this symptom takes several months to resolve after surgery.    I was on crutches for a few months before surgery.   I just recently caught myself walking without much limping at all.    I choose to think it IS related to HPT!    At least, I sure hope it is, because I sure don't want to deal with this for the rest of my life! OUCH!!!

Audrey

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Post by Brigitte0 Thu May 22, 2014 8:31 am

Hi Audrey

The Endo was at pains to explain the difference between Vitamin D and Calcium which I admit I didn't really understand but I did agree to carry on with the Cholecalciferol and it would be reviewed once the results from yesterday's blood test came in. My calcium levels were never really high anyway, just a bit above normal. He doesn't expect them to go higher but I suppose we shall see!

I'm glad to hear that the Plantar Fasciitis might actually be connected to HPT! It's only really taken off in the last month or so and I don't want it to hang around thank you very much. I hope yours continues to improve.

Love
Brigitte x
Brigitte0
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Post by Brigitte0 Thu May 22, 2014 3:40 pm

Kathi, I don't know how I missed your post; sorry for not acknowledging it. I don't think MENS was mentioned and I don't really know anything about it. I'll have to ask Dr Google! Thanks for your good wishes.

Love
Brigitte x
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