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Stuck in a rut

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Stuck in a rut

Post by mel123 on Wed Aug 20, 2014 8:20 pm

Hi 

Wow so much has happened on here, only been away a short time and there are peeps on surgery lists and moving forward with their appointments which is great news.  Razz  Smile  Laughing 

I`ve received a response to my letter I wrote to the locum endo I saw in June.  I wanted to know if I should be doing a 24 hour urine collection (not done one yet and feeling left out) and I wanted a copy of the two scans in had recently on my neck.  

The response was "I note that the last two blood tests that you had have indicated that your calcium levels have since normalised and your PTH is now normal as well.  As such at this point in time, I do not think a 24 hour collection is indicated". 

With regards to my request of the two scan reports she wrote "there was no convincing evidence of a lesion".  "This will be discussed further at your next appointment".  No reports enclosed! 

I get a feeling my next appointment will be along  the lines lets wait and see what happens. Crying or Very sad  Shocked  Sad

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Re: Stuck in a rut

Post by Lucie83 on Wed Aug 20, 2014 8:26 pm

Hi Mel

Sorry to hear your response was disappointing  Rolling Eyes  I know that feeling too well, I'm in a similar boat to you, being monitored with blood tests as nobody can make their minds up whether I have HPTH or not! 

I feel your frustration and the forum does help. Keep fighting with those Endo's and GP's. 

What's your levels been like?

Lucie x

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Re: Stuck in a rut

Post by mel123 on Wed Aug 20, 2014 8:37 pm

Hi Lucie 

DatePTH
(15-65)
Corr. Cal. (2.2-2.6)Vit D
(50-144)
Phosphate (0.8-1.5)
20.01.14Not done2.66Not doneNot done
23.01.14812.62350.83
20.03.14542.65320.64
31.05.14Not done2.5637 Not done
10.06.14532.58470.62
06.08.14632.50660.77

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Re: Stuck in a rut

Post by Little Audrey on Wed Aug 20, 2014 8:53 pm

Mel, this is so sad. Your levels clearly indicate hyperparathyroidism. There is no way your parathyroid hormone should be that high with your calcium levels as high as they are! Why is this so hard for these doctors to understand?!! This really ticks me off!!! You REALLY need to email Dr. Norman. Even if you don't want to or can't go there for your surgery, I think you should email him just to get his diagnosis. I don't know if you've checked out my levels which I posted on here a few days ago. You will notice, for instance, that I also had a calcium of 2.65 (10.6 in US numbers). At that time, my PTH was 49.7. Yours is 54! I also had a calcium of 2.62 (10.5 in US numbers). At that time my PTH was 55.9. Yours is 81!! Please consider emailing Dr. Norman for his opinion. If nothing else, you can take his diagnosis with you to your appointments. It might make your doctors sit up and take notice and maybe help to get you diagnosed.

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Re: Stuck in a rut

Post by Jasmine2 on Wed Aug 20, 2014 9:15 pm

I agree with everything you said Audrey, plus Mel your phosphates are low as well which is another indicator for pHPT taken together with your inappropriately high PTH in relation to your calcium level. What is wrong with these idiot doctors? !!!!!!! If we can work it out what is their problem? Well, we know what their problem is - lack of knowledge and understanding of parathyroid disease and the inability to recognise or acknowledge their areas of weakness. Mel, you might also consider emailing Fausto Palazzo to ask for his opinion on your numbers? Forgive me if you've already considered this and posted about it, I struggle to remember everyone's back story, which is very embarrassing - thanks for that pHPT!!!!! Grrr......Yes, contact Miles Levy, he's my endo and he's grrrrreat! Dr Babak Larian is kind of Dr Norman's counterpart on the West coast of America, based in Los Angeles I believe, very well respected, great surgeon and perhaps not quite so outspoken as Dr Norman but equally as passionate about PT disease. I contacted Robert Hardy and Fausto Palazzo, did my research, compared their responses, and chose Fausto, but that was my choice and I'm led to believe that Robert Hardy is a progressive, forward thinker too.

Jasmine x


Last edited by Jasmine2 on Wed Aug 20, 2014 9:25 pm; edited 1 time in total
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Re: Stuck in a rut

Post by mel123 on Wed Aug 20, 2014 9:17 pm

Hi Audrey,

So pleased that your latest blood results were good and I hope your ear is still progressing well? 

Yes I will contact Dr Norman for his opinion and take it as back up when I next attend my endo appointment. Sallie Powell who lives local to me wrote a report in our local newspaper with regards to her experience with misdiagnosis of HPT  (I think Jasmine posted the article on this forum). Well I contacted Sallie about our local hospital and she basically said I need to be referred elsewhere and gave me three names of contact, Miles Levy at Leicester, Dr Larian (not sure where he is based) and Robert Hardy at Liverpool. I will be emailing these people for their comments. 

This knock back has made me feel more determined to fight on.  I need to keep in the back of my mind that my osteopenia spine of -2.3 will soon be my osteoporosis spine, I am 41 years old and premenopausal. Take care Mel x 

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Re: Stuck in a rut

Post by Jasmine2 on Wed Aug 20, 2014 9:30 pm

That's weird, I read your last post Mel while I was editing mine and replied to some of your points, now it looks like I'm psychic and answered your points even before you made them haha. Spooky ...

J x
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Re: Stuck in a rut

Post by Little Audrey on Wed Aug 20, 2014 9:50 pm

Well, Mel, as long as you contact SOMEONE who has a bit more knowledge about this disease than the doctor who told you your levels are all good now, it should help. Good luck!

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Re: Stuck in a rut

Post by Little Audrey on Wed Aug 20, 2014 9:55 pm

Forgot to thank you, Mel, for you comment regarding my new levels.  Smile 

So happy you're ready to get back on your horse again and ride!! Hi-ho Silver, away!!

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Re: Stuck in a rut

Post by mel123 on Wed Aug 20, 2014 10:08 pm

Hi Jasmine

I thought HPT made us psychiatric not a psychic  Very Happy , maybe you have found the one advantage of having this disease!! every cloud....... 

Do you have an email address for Robert Hardy and Fausto Palazzo please?

Hi Audrey 

I have just read one of your posts and i`m sorry your ear is not right still, I commented earlier to say is was!! Really struggling to concentrate what with this HPT and the GCSE`s results being issued tomorrow. 

Take care 

Mel x

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Re: Stuck in a rut

Post by Jasmine2 on Wed Aug 20, 2014 10:48 pm

Haha! Yes, every cloud indeed......! And I have a 16 year old anxiously awaiting the GCSE results tomorrow! As if I needed any more anxiety, I'm more stressed than he is! 

Email addresses: 

Roberthardy@endocrinesurgeon.org.uk

FP is: surgical.secretary@googlemail.com   

These are for their private practices but I wrote to them in the first instance asking for an opinion and got helpful replies.

Jasmine x
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Re: Stuck in a rut

Post by mel123 on Wed Aug 20, 2014 11:14 pm

Great thank you and I wish your son the very best of luck for tomorrow x

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Re: Stuck in a rut

Post by Little Audrey on Wed Aug 20, 2014 11:47 pm

I think we're all pretty much in the same boat here as far as our memories go. As much as I'd like to and as hard as I try, I have enough trouble remembering my own things, let alone everything else that is happening on the forum. I would much rather forget my own problems and concentrate on all of you, and I try to do that, but it's rough. I think we can all forgive one another for forgetting what someone has or hasn't posted on here. At least we still care, even if we can't remember, right?  Smile

No problem about the ear, Mel. Thank you for caring. flower 

Audrey 

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Re: Stuck in a rut

Post by Brigitte0 on Thu Aug 21, 2014 8:59 am

Memory? What's that then? I've forgotten. 

Mel, never give up and take the bull by the horns and get emailing as advised. I can't think of a better person than Sallie Powell to have on your side: she's continually fighting for people in this country in the same circumstances as you. It makes my calcium rich blood boil to think of the battles people in your situation have to go through.

Best of luck for the GCSE results! Had that last year; this year it was AS and end of first year at Uni results which were both successful, thank goodness. 

Love and massive supportive hugs
Brigitte xxx
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Re: Stuck in a rut

Post by Jasmine2 on Thu Aug 21, 2014 10:16 am

10 A - Cs ....... feeling happy! 

J x
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Re: Stuck in a rut

Post by Little Audrey on Thu Aug 21, 2014 10:49 am

Not sure what this test is, but it sounds like the results were much more than satisfactory!  cheers 

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Re: Stuck in a rut

Post by Lucycatnaps on Thu Aug 21, 2014 11:02 am

Hi Mel,
Well that response from your endo really sucks, as everyone has said I would ditch her and seek a second opinion elsewhere.  My bloods are similar, slightly higher calciums and now lower PTH's.  Mine seem to dropped back into normal range on the PTH when they changed to the new assay test and also as summer approached.  I have read that Vitamin D levels being raised can affect PTH levels bringing them down.  My phosphate level is a bit higher at 1.11 but again have read that only 50% have low phospate levels.  I would definitely say you have primary PTH!!!!!

Jasmine! That is great news for your son, please tell him congrats and well done!  
Hugs to you both, 
Sue
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Re: Stuck in a rut

Post by Amanda Lynne on Thu Aug 21, 2014 11:14 am

Hi Mel I'd definitely email either surgeon, I'm sure you do have a PTH adenoma and I think they will be your best bet to get things moving.
Well done all your children with their exams, you are making me feel old as mine have done all of that, I don't miss all the worrying, I just worry about them with other things now Rolling Eyes  Very Happy In fact I just worry about everything !!!
I'm going to see chiropractor tomorrow my neck and back are really stiff, clicky and painful, starting to give me headaches again  Neutral 
But the good news is I'm going on a trial run for Tea at The Ritz, I'm having a cream tea (hope it doesn't set off the reflux but what the hell I'm having it anyway) at a tiny local hotel with my twin Sister this afternoon, I thought I needed a treat Laughing I think it will be slightly quieter than the one we have planned and I haven't asked her to do a 24hr urine sample in preparation affraid 
Love Amanda xxxx
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Re: Stuck in a rut

Post by Little Audrey on Thu Aug 21, 2014 11:25 am

Sounds like fun, Amanda!     I didn't realize you had a twin.   That's pretty cool!    

I wonder what she would have said if you told her a 24-hour urine was required for your little get-together.   That's funny!!

Sorry about the stiff neck and back.  I can totally relate.   I know that is terribly painful!   As I've mentioned before, I think my very stiff neck has been my worst symptom during the past 3-3/4 years.    It's bad enough having a painful, stiff neck for a few days, but dealing with it for YEARS nonstop has been hell!!!    And, yes, I too have a lot of headaches.  I figure it's probably from the very tight, stiff neck, shoulder, and back muscles.     Aren't we a mess?!    Shocked 

Enjoy your time out with your sister! Hope the chiropractor can help.

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Re: Stuck in a rut

Post by Amanda Lynne on Thu Aug 21, 2014 12:55 pm

Thanks Audrey yes having a twin is cool, we aren't identical but similar. I don't think she would be at all surprised if I had asked her that, she thinks I'm loopy any way. Wink 
I agree about the neck/head pain being worst and having it almost constantly is really rotten. We are a bit of a mess aren't we Smile 
I hope chiro helps I could do with a bit of relief from this, coping with all the other pain I have is bad enough but at least I can cope with that.
I'm sure seeing my Sister will take my mind off it for a while.
Love Amanda xxxx
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Re: Stuck in a rut

Post by Tigerlily on Thu Aug 21, 2014 8:17 pm

Good luck with chiro, Amanda, and have a lovely Ritz-pre-Tea.

I met my cousin yesterday for the first time in ages (she lives in the North) and we had a great time together.

Enjoy!

Love from Tigerlily xxxx

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Re: Stuck in a rut

Post by mel123 on Thu Aug 21, 2014 9:29 pm

Gone completely wild and emailed all three last night - Miles Levy, Robert Hardy and FP, i`ve not had a response yet but hopefully this time next week I will have.

Jasmine, congratulations to your son he did extremely well in his GCSE`s. My eldest did really well in her`s 7 A-C very proud, especially considering I feel I haven't been 100% supportive.  

Amanda and Audrey I hope you both get some relief from your stiff necks and backs.

Take care everyone x

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Re: Stuck in a rut

Post by Brigitte0 on Thu Aug 21, 2014 9:53 pm

Hopefully you'll get replies soon, Mel and can go on from there. 

Amanda, I hope the Chiro can give you some relief - I live for visits to mine at the moment. Also hope you enjoyed your mini Ritz experience.

Well done for having clever children, Jasmine and Mel. Hope they're pleased with what they've achieved. 

Love and hugs 
Brigitte xxx
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Re: Stuck in a rut

Post by Amanda Lynne on Thu Aug 21, 2014 10:33 pm

Thanks Ladies pre Ritz tea was yummy, felt like a little fat piggy after it.pig 
Yes I hope he can ease it off so I don't feel like I'm 100 years old Crying or Very sad any more.
Congrats to all who have just had exam results, it's one less thing for you to worry about.Xxxx
Love Amanda xxxx
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Re: Stuck in a rut

Post by Jasmine2 on Fri Aug 22, 2014 8:12 am

Thanks all, yes well pleased - well, I think relieved is more the word - with the exam results, and well done to your young 'un Mel. We're especially overwhelmed with our boy as he was diagnosed with a form of autism when he was 7 (auditory processing disorder being his main condition on the spectrum) and he has worked so hard to stay in mainstream school. He has overcome so much and had to work that little bit harder so to achieve that level of success is overwhelming. And yes, Mel, I'm completely with you in feeling that you haven't been 100% supportive, in fact I even voiced those words to FP when I saw him, that I have an autistic 16 year old who needs me and I just don't feel able to be 100% there for him.

Jasmine x
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