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Hello to the new forum

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Hello to the new forum

Post by molly53 on Thu Apr 03, 2014 7:39 pm

Hi from Molly,
Just thought I'd re introduce myself . I joined the old forum around March last year and received some good advice support and feedback from Simon initially and other members too.
I'm on 6 monthly hospital visits with the endocrinologist , next appointment in July. Although being diagnosed , I'm one of the "moderately afflicted" sufferers . So unfortunately I'm a wait and see patient. I know this is not acceptable but have fought my corner with my GP and the hospital to no avail. Even asking for referral for a 2nd opinion which I was refused, This was beginning to stress me more than the illness was so I am taking my Vit D tablets (which have alleviated many symptoms - or should I say masked many symptoms) and am playing the waiting game.
I've took on board your comments and want to say that I respect your opinions. I have often logged in to the old forum and although I don't post much , I still find comfort and support from the forum. Well done for continuing and maintaining the lifeline for all members new and old.  Smile 

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Re: Hello to the new forum

Post by Little Audrey on Thu Apr 03, 2014 8:19 pm

Hi Molly,

Glad to see you back with us! It is a shame you have to wait for surgery since you've already been diagnosed. I don't know what doctors think. I have no idea why they think it's a good idea to put off surgery once the disease has been diagnosed. It would be nice to just get it over with and get on with your life. Very happy you do not have severe symptoms, but they need to take care of you.

Yes, we are all very grateful for Nelly and her husband for starting this new forum for us all! The old one meant so very much to every one of us. I myself have no idea how I would have gotten all that I have without everyone on there, and it seems I still have quite a way to go, so I am very thankful to be able to continue chatting with all of these wonderful people!

Please keep us posted on your progress and good luck!

Audrey

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Re: Hello to the new forum

Post by Lucycatnaps on Thu Apr 03, 2014 8:57 pm

Hello Molly,
I just wanted to say hello and say that I just don't understand the logic of watch and wait. I know it is the patient's right to decide yes or no if they want to undergo surgery and I respect that, but if it is a conclusive diagnosis what reasons do they give to deny surgery as an option? I am very new at all this and have yet to see the endo to be formally diagnosed. I really feel for you and can understand how frustrating it must feel as I know I would be the same. I hope you don't mind me asking but are you in the UK and if so, which area is your endo based .
Sue in Lincs
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Re: Hello to the new forum

Post by mel123 on Thu Apr 03, 2014 9:09 pm

Hi Molly

I feel sorry that you have to watch and wait for your symptoms to get worse, I fear this will be what my Endocrinologist will say in June. Can I ask what "moderately afflicted" means is this your symptoms or your blood levels? Do you know what your calcium, PTH and vit D levels are?

Take care

Mel

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Re: Hello to the new forum

Post by Hadleigh on Thu Apr 03, 2014 9:51 pm

Hi Molly and welcome

Sorry to hear you are having to wait, hopefully your docs will see sense before much longer. Could you perhaps see a new Endo privately for a second opinion about surgery ? My Endo was private but she referred me back to the NHS for surgery, might be worth thinking about.

All the best

Nelly

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Re: Hello to the new forum

Post by molly53 on Thu Apr 03, 2014 10:49 pm

Hi to you all,
In answer , I'm from Doncaster, South Yorkshire . After the initial blood tests and 24 hour urine test and bone scan ,I was informed by letter that I was diagnosed with hpth and low vit d, I was prescribed Vit d which I started taking in July 2013. On my appointment at end of July I expected to be referred for surgery but the endo said he was only 80% sure of the diagnosis and wanted to wait and see . I had researched and really argued my point but was made to feel really small and came away upset and totally wiped out. I returned to my GP but altho he listened,he agreed with the endo. On the 2nd visit in october , a nicer endo but result still the same but 90% sure of diagnosis. In January after a routine mammogram I had to go for a ultrasound scan and the guy who did it also does scans for hpth he advised me to go back to my Gp. I did but bottom line is that the NHS has a guideline b4 referralforsurgery and my calcium levels aren't high enough. Now , before you all start shouting ,I know that the level is irrelevant and believe me,I have argued like mad about it but can't seem to get any further. It was beginning to take over my life, thoughts etc and I was sinking so I decided that as he would not refer me , I would try to be positive and channel my energies into living for the moment. My next appointment is July , so I'll see what happens then. My calcium levels have been 2.65 / 2.67 and 2.7 . Not sure about my Vit D ,but he said they were in the normal range last time. my PTH was 84 initially ,not sure after that .
My foggy head and memory /confusion is a lot better with the Vit D input. I'm not as depressed as I was but my moods do fluctuate and I'm not as happy go lucky as I usually am . I don't ache as much and my acid reflux is controlled by a low dosage of PPI. My blood pressure is raised which i'm keeping an eye on . That's about it really.
Thanks for asking ,hope I haven't bored you to death ,Molly

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Re: Hello to the new forum

Post by Hadleigh on Thu Apr 03, 2014 11:12 pm

Your calcium levels are similar to mine, highest I have been was 2.81 but that was a one off, I think last result was 2.74. My Vit D was 12 which is what started it all off for me, problem is I'm not to good on supplements, I can take them for about a week then I start to feel yukky. My last Vit D was 30 something but the surgeon isn't that bothered, he would prefer it up around 60 but I can't see how I can do it unless we get some sunshine very soon ! I also have high BP and they want me to take tabs but I'm holding off until I see if surgery cures it.

I presume your pth is in a different measurement as top of my range is 6.9 pmol/l, mine is 7.5

I can totally understand you putting it all on the back burner for now rather than letting it rule your life but it is frustrating that they want to leave people to get worse before they do anything, this is something that really annoys my surgeon.

Don't worry we won't shout at you Molly, we don't want to scare anyone away  Wink and we don't get bored easily either !

Take care

Nelly
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Re: Hello to the new forum

Post by molly53 on Fri Apr 04, 2014 12:15 am

Hi Nelly,
Maybe my PTH was 8.4 not 84, I seem to think my Vit D was 65 last time. I agree it is frustrating ,regarding going private then back to NHS for surgery ,that was my idea when I went back to my GP but he implied if I went private then I would have to have all the tests privately and it would cost me a fortune . I'm sure the endocrinologists like to have the power to make the decision of referring for surgery ,certainly the guy I saw was acted as though he was God and his opinion was not to be challenged .He laughed at me when I mentioned my bloodpressure was to do with Hpth - he said there wasnolink whatsoever!!
Regards,Molly

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Re: Hello to the new forum

Post by Little Audrey on Fri Apr 04, 2014 12:53 am

Well, that was strange, I typed a comment, hit send, and it disappeared.    Shocked 

No, Molly, we don't shout on here.  We're too busy laughing at fanny packs and bum bags, and let's not forget about getting banged on the elevator!    Laughing 

As far as your levels go, if your calcium was 2.65 and your PTH was 8.4, you most definitely have at least 1 adenoma that needs to be removed.    I always convert the UK numbers so I can compare them to my own US numbers.   A calcium of 2.65 in the UK would be 10.6 in the US.    I had a calcium level one time of 10.6.  At that time my PTH was 49.7.   Your PTH of 8.4 would convert to 79.4 in US numbers.  That is way too high for a calcium of 10.6!    There is no good reason for your doctors to make you wait for surgery.    Your symptoms are only going to get worse, and your body is only going to be more damaged when you do finally get it repaired by removing the adenoma or adenomas.    I have no idea why anybody would wait to be honest with you.    I couldn't get to Tampa fast enough when Dr. Norman diagnosed me!   Then again, I have been suffering from a LOT of muscle, tendon, and bone pain, with many other symptoms, but I think I still would have wanted to get the surgery over with and be well again.    

And, yes, many doctors and surgeons think they are GOD!    I'm sure my doctors got very tired of me challenging everything they said, but I was so sick, I was not about to back down just because they didn't like it.   I was paying them to make me well.   I taught my doctors quite a bit about this disease.  Hopefully, the next time someone walks in their office like I did, they will be able to recognize the symptoms and the lab results and diagnose them without putting them through the hell that I had to endure for 3 very long, painful, frustrating, depressing years!      When I was a child I was VERY shy and quiet.    I have since learned to speak up until someone listens!!!    

My doctors told me a lot of things that made no sense.   I questioned them all.   I proved to them all that a person does not need a degree to know what they're talking about!    

March on!

Audrey


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Re: Hello to the new forum

Post by Rosie11011 on Fri Apr 04, 2014 9:31 am

Hello Molly,  your calcium and pth levels are very similar to what mine were, and remained at those levels, for over ten years.
I had developed osteopenia (thinning of bones) and have had a fracture. Apart from that I only had very mild symptoms.  I had surgery during the first four years after diagnosis, which failed because the surgeon was inexperienced.  I then had to wait another 6 years for my second surgery, because I also had an endocrinologist who was of the 'wait and watch' brigade, and a GP who just didn't really get it.

When I joined this forum I found Simon's list of surgeons in the UK, which I believe has now been transferred to this new site.  I contacted Mr Robert Hardy who is in Liverpool, and he will see patients who have not necessarily had a referral from their GP.  It's not clear on his website whether this refers only to private patients but I did contact his secretary who thought that he probably would see me. I assume other surgeons may also do this, but it they won't I believe most will see people for an initial private consultation, and then surgery can be done on the NHS.

However I pressed my GP for a referral to Mr Hardy and he had agreed to do this, although by then my blood levels had risen a little more and my endocrinologist at last agreed to refer me to our local surgeon (who does most of the parathyroid surgery in the area although he is a general surgeon.)  He removed two parathyroid glands which had presumably been causing trouble for all those years. Sometimes it's the hidden damage which can be the most worrying.

Knowing what I know now, and with the benefit of information on this forum, (and also on parathyroid.com - how I wish all British doctors and endocrinologists would read, mark, learn and inwardly digest this site!), I would have pressed for an expert consultation much sooner.  I believe Mr Robert Hardy is an excellent surgeon and as I live in the North West he would have been my first choice, but I'm sure you will be able to find a surgeon much nearer to you own home.

Keep posting Molly, and let us know how you go on.
Love Rosie.

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Re: Hello to the new forum

Post by Rosie11011 on Fri Apr 04, 2014 9:37 am

Molly, I also meant to say that if you look on parathyroid.com, Dr Norman has some charts on which you can plot your own results, proving that you actually have this disease. You could download these, plot your results and take them with you to your consultation.

You have to convert your results to the American levels. Here is the formula:-

Calcium multiply by 4 for USA levels
PTH multiply by 9.43 for USA levels (Thank God for the calculator!)

Best wishes,
Rosie

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Re: Hello to the new forum

Post by Hadleigh on Fri Apr 04, 2014 12:03 pm

Hi Molly

Yes if you had to have all the tests privately it would cost a fortune. I was lucky that my GP did all my tests on the NHS apart from the short syn test and 1 calcium test which I paid for at the private hospital.
I would rather be having my surgery at the private hosp but can't justify spending that much on me, but the hospital I'm going to have just opened a huge new building so at least it's all new and modern and hopefully I will get my own room  cheers or not !

Take care

Nelly
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Re: Hello to the new forum

Post by Jasmine2 on Fri Apr 04, 2014 1:56 pm

Nelly, forgive my poor memory but did you say you have got your surgery date?
Jasmine x
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Re: Hello to the new forum

Post by Hadleigh on Fri Apr 04, 2014 2:08 pm

No not yet Jasmine, should be around June or July I reckon. Going for US and Mibi 24th April, boy thats going to be a long old day as we have to add maybe 2 hours journey time either side of the time at the hospital, poor dogs will have their legs crossed  Laughing 

Nelly
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Re: Hello to the new forum

Post by Jasmine2 on Fri Apr 04, 2014 2:35 pm

Yep, you're not wrong as there is a three hour gap between the two stages of the MIBI as well..... I have a lovely lady who grooms my girls and offers doggie daycare as well so I don't have the worry of leaving them.  She boarded them while I was in Tampa as well so that was one less thing to stress about.

Jasmine x
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Disappearing Things on the Forum

Post by Admin on Fri Apr 04, 2014 8:05 pm

@Little Audrey wrote:Well, that was strange, I typed a comment, hit send, and it disappeared.    Shocked 

I think that these things are sometimes going to happen - just to confuse us and keep you on your toes.

I spent ages early this morning typing a Member's Newsletter, accidentally knocked (as in tapped, not the other) the mouse and everything disappeared.
So, I started again, clicked send and I thought that it had gone (this was the original Newsletter that I had intended to send this morning).
It had gone alright, but I have no idea where.
Hence the panic short Newsletter with notification of the address change, which did go-out.
Then I had another go at the full Newsletter, which was also successful.

Fortunately, I do not plan to do many Newsletters Rolling Eyes 

Edwin
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Re: Hello to the new forum

Post by Little Audrey on Sat Apr 05, 2014 2:21 am

Oh, no, Edwin, it sounds like we both had some very strange, unfortunate happenings with our messages today!  scratch  Hopefully, tomorrow will run more smoothly for us both.

Audrey

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Re: Hello to the new forum

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