Hyperparathyroid Forum
By logging-in to this Forum, you are agreeing to the Hyperparathyroid Forum Terms and conditions of Use http://hyperparathyroid.forumotion.co.uk/f5-hyperparathyroid-forum-terms-and-conditions-of-use

New Member

View previous topic View next topic Go down

New Member

Post by Guest on Mon May 19, 2014 10:32 pm

Hello,
 I have been on this hyperparathyroid disease journey for over 2 years this is my situation so far;
All scans CT, Sestamibi, and parathyroid ultrasound scan all negative.
All biochemistry still remains highly suggestive of primary hyperparathyroidism. 
My vitamin D levels were consistently low, 11, 21, 37, and after just finishing a course of vitamin D 60,000 iu weekly for 3 months my vitamin D level is now normal optimum level.
PTH LEVELS last taken in January 2014 was 15.5pmo/l
SERUM CALCIUM 2.98 mm/L
CORRECTED SERUM CALCIUM LEVEL 2.95 mmol/L
SERUM INORGANIC PHOSPHATE 0.7 mmol/L
On the 16th of April I had a parathyroid venous sample procedure because they were unable to locate the parathyroid, the hospital is looking at 4 gland hyperplasia or a ectopic parathyroid.

Well that was 4 weeks ago and I am still waiting on the results, my GP could not interpret the results as this was not his specialist field, so after calls to my local hospital by me, I was finally told that there was a subtle increase in an area, but they wouldn’t discuss the results over the phone and I have to wait for a hospital appointment after the MDT meets at the end of May.
 Why do we have to wait so long to be diagnosed, because during this time our health slowly declines, this dreadful disease slowly takes away our ability to enjoy life, it affects our home life, hobbies, due to the bone aches, fatigue, memory fog, lack of sleep, depression, etc.  Crying or Very sad 
Has anyone else had a parathyroid venous sample procedure done on this site? Apparently it’s quite rare and its only done in complicated cases of primary hyperparathyroidism.
 
 

 Thanks for listening!  Very Happy  Very Happy 

Guest
Guest


Back to top Go down

Re: New Member

Post by Johnny1967 on Mon May 19, 2014 10:54 pm

You don't need me to tell you that this disease is diagnosed bio-chemically. Tue chance of the tumour being ectopic are slim, much more likely it's where it should be, it's just not showing on scan. Don't know where you are but go elsewhere. The venous sampling is a crazy idea.

Years ago none of these scans and tests existed and surgeons went in and did the op. I know all this is easy for me to say as it's not my.neck.

There are many knowledgeable people on here who can advise. If I had numbers like yours I would email an NHS surgeon who had some courage and confidence and move away from the wingers you are dealing with, you can be treated anywhere in England if you live in England. I wish you all the best.


Johnny1967

Posts : 29
Join date : 2014-03-30

View user profile

Back to top Go down

Re: New Member

Post by Rosieb on Mon May 19, 2014 10:57 pm

Hello Mealinateacup and welcome to the forum.  I'm also new around here and I'm one of the lucky ones as I had an operation to remove one of my parathyroids and also my thyroid last March and all those rotten symptoms disappeared just about instantly.

Good luck with your results I hope all goes well for you.

I like your way of thinking Jonny
avatar
Rosieb

Posts : 11
Join date : 2014-05-19
Location : Qld.

View user profile

Back to top Go down

Re: New Member

Post by Johnny1967 on Mon May 19, 2014 11:14 pm

Meal, if you are in England you can be treated anywhere in England. Pls consider directly approaching a sympathetic surgeon directly. The members will advise based on your location.

The MDT is just another sign that your endo and surgeon have no confidence in what they're doing. Four gland hyperplasia and ectopic glands are rarer than glands that simply don't show on the scans. You will know of doc Norman in the US his view is neg scans mean the gland is hidden by the thyroid ie where it should be.

I.wouldn't mention Norman to a UK doc but you see what I mean.

I never get angry but your team are doing you a disservice.

All the best, John

Johnny1967

Posts : 29
Join date : 2014-03-30

View user profile

Back to top Go down

Re: New Member

Post by Amanda Lynne on Tue May 20, 2014 7:13 am

Hi Mealinacup
Johnny is right you can be treated wherever you want but it's a case of finding the right person, there are various depending on where you live.
Linny has had venous sampling done and surgery after. You could PM her and ask.
Good luck.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 55
Location : South East England

View user profile

Back to top Go down

Re: New Member

Post by Jasmine2 on Tue May 20, 2014 8:10 am

Hi Mealinacup, welcome to the forum, just sorry you have to be here if you know what I mean.  I echo what everyone else has said and I was going to suggest PMing Linnie (as she had venous sampling with Mr Palazzo which successfully located the site of the adenoma before surgery), but Amanda beat me to it! I think there are mixed opinions on the efficacy of venous sampling, and you're right it's usually only reserved for complex cases and re-do surgery, for example Linnie had a second surgery and I myself have had two surgeries and still have persistent PHPT, so I think I may well have to go down that route myself.  Whilst I don't think it's a particularly pleasant procedure, I don't think it's all that unpleasant either, by all accounts.

I agree totally with John!  If I were in your position I would be asking for a referring elsewhere for an expert opinion, as your medics don't seem to have a handle on it.  A few of us on here have done a lot of research on sleuthing out the best people to see and how to go about it so don't hesitate to shout out if we can help.

Keep us posted Mealinacup, hope all goes well for you.

Jasmine x
avatar
Jasmine2

Posts : 751
Join date : 2014-03-30
Location : Cambridgeshire UK

View user profile

Back to top Go down

Diagnosis

Post by Guest on Tue May 20, 2014 11:04 am

Hi, Johnny, 
Thank you for your advice, i have already discussed with my GP the possibilities of changing to a different hospital as i am not very happy with the present team, he persuaded me to hang in there and wait for the result of the parathyroid venous sample, so if these results are nonconclusive and they continue to dither, i will request another hospital and surgeon.

Hi Rosieb,
I am so pleased that your operation was a success and now all is well with you, thank you for you message it cheered me up!!


Hi Amanda lynn,
Thank you for your advice i agree with you and Johnny about changing to another team, but at the moment i am just waiting on the results of the parathyroid venous sample, then i will make my move, i live close to London about 20 minutes away by tube, Hammersmith Hospital is quite near.  I will also private message Linny about the PVS procedure and its outcome.

Hi Jasmine2
I am sorry, you are having a difficult time with repeat surgeries and persistant PHPT it must be very draining for you, if you have to have a venous sample i can tell you its not as scary as it sounds its a tad uncomfortable but bearable, i was so nervous my kness were knocking and when the Consultant Radiologist told me he only did 8 or 9 of these a year i nearly jumped off the table, if he had told me that at the beginning they would not have got me in that room!! The procedure went well and in fairness the Radiologist was efficient and caring.

Thank you all once again
Mealinacup

Guest
Guest


Back to top Go down

Re: New Member

Post by Little Audrey on Tue May 20, 2014 11:33 am

Well, crap, it just happened again! I typed a nice message for Mealinacup, I hit "Send," and POOF, it disappeared! I see that Mealinacup just posted a comment too, so I guess that's why. Geez, I hate when that happens.  Sad 

I will try this again, and this time I will save the message before I hit "Send!"

Welcome to our forum, Mealinacup. It's very nice to have you aboard. Yes, your numbers are very indicative of hyperparathyroidism, and it is very obvious you need surgery! I am so sorry you are struggling so badly to reach that goal. Every aspect of this $#%&#% disease is HELL! Eventually, we get where we need to be, but it is usually a very long, hard struggle to get to that point.

I am in the US, so I am unable to help you out by suggesting where you need to go for help, but I do know you need help, and I sure hope you can find it soon!

I only had 1 scan before my surgery. It was done the morning of surgery. It was also negative. A few minutes later I had 2 tumors removed. Negative scans mean NOTHING! I don't know why it is so hard for doctors to learn this. I do hope you can find a doctor who understands this!

I am 6 months post-op now. I am still struggling with a few symptoms, but I am seriously thinking there is something else going on with my body beside just HPT. Since surgery my calcium had been tested 4 times. The results revealed levels of 10.2, 10.0, 10.2, and I do not yet have the results of the 4th test. My PTH is half of what it was before surgery, so that is promising, but I would be much happier if my calcium was a bit lower. Sure wish this disease was like tonsillitis or appendicitis, and you would be well immediately after surgery! What a stupid disease!!!

I do hope you find someone to help you VERY soon!!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: New Member

Post by Tigerlily on Tue May 20, 2014 11:44 am

And it just happened to me too, Audrey!

You must have been posting then at the same time as me!!

I've just reported this to the Admins.

Tigerlily xx

Tigerlily

Posts : 1246
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: New Member

Post by Tigerlily on Tue May 20, 2014 11:57 am

Hi mealinacup

I just posted a long message to you that has also disappeared, so have reported this to the Admin here.

This will be the shorter version (!):

Jonny is right. If your team cannot diagnose HPT from your blood test results then you are not being very well served by them. Your calcium is quite high already. I am not a medic. This is just my view of your situation.

In your shoes, I would try and get an appointment with Fausto Palazzo at the Hammersmith/London Endocrine Centre. I would invest the £250 or so it would cost for a private appointment initially so as to get there quickly. If you speak to his secretary, she will explain that after the first private appointment you can revert back to the NHS system for further tests or treatment, as long as you have a GP's referral letter. Someone did this recently on the forum and got an appointment for next week!

Jasmine is a mine of information regarding NHS/private treatment which has been very valuable to us.
Others will also chip in here, I'm sure.

I can understand you wishing to wait for the VS results and the end of May is not far away. But I wouldn't wish to wait another 6-8 weeks after that for a hospital appointment just to hear the results. You have results in your hand that are very indicative of HPT.

You probably know a lot about HPT already and our reference section here has a lot of useful information in it.
Do have a look at www.parathyroid.com. It is a very useful resource for patients. The style of writing however seems to irritate (to say the least!) any UK medics you show it to, so don't wave it around too much, as some of us have done! I think that's what Jonny means.

Come back here often for more advice and views (and a lot of laughs too!) and keep us posted on progress.

"See" you again here soon and good luck with your HPT odyssey going forward.

Love Tigerlily xx

Tigerlily

Posts : 1246
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: New Member

Post by Guest on Tue May 20, 2014 5:13 pm

Hi little Audrey,
Thank you for your kind message and i agree just because the scans i have had have come back negative, there is a parathyroid tumour there as my biochemistry results vindicate this, i hope you get to the bottom of your calcium levels still being up and maybe in the next few months it will lower to normal levels, its individual to each person i suppose. 

Hi Tigerlily,
Thank you for your advice, everyone has been very welcoming, i have heard of Fausto Palazzo at Hammersmith he has a good reputation and yes once i finally get the results of VS i will make a decision, normally i am more go getting and decisive, but my dad passed away last month and my get up and go has got up and left! Still life goes on so i will gather myself together and moved forward.

Guest
Guest


Back to top Go down

Re: New Member

Post by Tigerlily on Tue May 20, 2014 5:22 pm

Hi mealinacup

So sorry to hear about your Dad - you will have needed all your energy stores to deal with that. I know what you mean about being more go-getting usually but not now. In that case, I'm sure you're doing the right thing to wait for the VS results as this will be extra "evidence" for whoever you see next.

Have a bit of a Bank Holiday rest meantime and keep us posted on your progress.

Love from Tigerlily xx

Tigerlily

Posts : 1246
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: New Member

Post by lozza on Tue May 20, 2014 7:31 pm

Hi,

Just want to say welcome to the forum, it is not your fault they can't find the faulty gland, your bloods point to PHT , sound like their meeting will discuss your case in depth and hopefully they will come up with an action plan.

Might as well see what they say and than look at all options available. You are right about this zapping the little energy we have.

take care and keep us posted

best wishes
Lozza

lozza

Posts : 149
Join date : 2014-04-07

View user profile

Back to top Go down

Re: New Member

Post by Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum