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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

First topic message reminder :

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 Brigitte0 on Fri Aug 22, 2014 9:07 am

I bet you have supported him more than you think, Jasmine, just because you're there and you always have been. 

Massive hugs and love 
Brigitte xxxx
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Re: Stuck in a rut

Post by Amanda Lynne on Fri Aug 22, 2014 9:22 am

Jasmine the love you have for your Son will get you both through the hardest of times. Extra well done to him for working so hard and I know he's been worried about you, he's a star  I love you 
Love Amanda xxxx
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Re: Stuck in a rut

Post by Meggy on Fri Aug 22, 2014 10:18 am

Fanatastic results, tell him well done! Your consultant sounds an ass, there are good ones out there so hopefully you'll get a decent one soon.

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Re: Stuck in a rut

Post by Tigerlily on Fri Aug 22, 2014 7:43 pm

Hi Mel

The calcium levels you give in your post are Corrected Calcium levels.
Are your Serum Calcium levels listed on your blood test result form as higher than these?

The Corrected Calcium levels you give are quite high, and the associated PTH levels are inappropriately high. Even though the PTH levels are sometimes not higher than the top of their range, they are still inappropriately high for these calcium levels. If your system was working correctly, I estimate that (and I am not a medical person, just someone with similar levels to yours who has been diagnosed with a PTH adenoma) a corrected calcium of 2.68 would be associated with a PTH level (from the same blood draw) of much lower levels, say 1 or 2 (i.e. 9 - 19 or so).

http://www.nhs.uk/conditions/hypoparathyroidism-hyperparathyroidism/Pages/Introduction.aspx

This link is to the NHS Choices website page for Hypo and Hyperparathyroidism, and in the second HyperPTH section it explains about calcium levels not having to be that high for PTH disease to be diagnosed:

"The severity of your symptoms does not always match up to the calcium level in your blood. People with only a slightly high calcium level can have severe symptoms, and vice versa."

I would print out these pages and give them to your specialists to read. You might also print out the Hyperparathyroidism pages from www.patient.co.uk. I am suggesting these two sets of pages because the first one is  from the NHS and the second one is written by UK doctors. I have found that anything that I have asked my specialists to read that is from the US has not been very well received! Only because of professional pride, I think, and they can be a very clique-ey lot!

By the way, your phosphate levels are low in their range, and phosphates are often low in parathyroid disease, just as Jasmine points out.

Your Vitamin D levels are also on the low side, but I wouldn't mention them unless you have to, as then you might end up in the same boat as I did, trying to prove that I didn't have secondary hyperparathyroidism due to low Vitamin D (if it had been secondary HPT, then my calcium levels would have been LOW and not high in the range, as they were). 

The third paper I would take with you (and leave these on the specialist's desk if they won't take them from your hand - this has also happened to me ....) is:

Parathyroid adenomas and cardiovascular risk  by N Garcia de la Torre, J A H Wass and H E Turner

Just google the name of the paper, or try www. endocrinology.org and try and locate it there. I will post a link to it if I can find it again. This was found by Nancy. Don't frighten yourself with it, but it does indicate that untreated hyperparathyroidism is a risk for cardiovascular disease. And as cardio disease is a hobby horse of the NHS at the moment, they might take more notice of this, as they would not want to have "missed any pathology" that might give you a risk factor for cardio disease. It wouldn't look good on their figures!

These are the 3 papers I would give to a UK specialist to try and convince them that my biochemistry is indicative of parathyroid disease, if they are not able to diagnose it themselves!
Let me know if you need more help - and I would ask other forum members to chip in here if they think I have got any of this wrong or if they can add to it.

Love from Tigerlily xxxx

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Re: Stuck in a rut

Post by Little Audrey on Fri Aug 22, 2014 8:05 pm

Tigerlily, I didn't even notice those were corrected calcium levels listed up there! That makes a big difference! Thank goodness for your eagle eye!!  Smile 

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Re: Stuck in a rut

Post by Tigerlily on Fri Aug 22, 2014 10:29 pm

Bless you, Audrey - I remember the rocket I got from Dr Norm about corrected calcium, so it's stuck in my brain cells!!

Love from Tigerlily xxxx

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Re: Stuck in a rut

Post by Little Audrey on Fri Aug 22, 2014 10:37 pm

Yes, I have no idea why Dr. Norman was so convinced all of you from the UK were turning in corrected calcium levels to him. I don't know why he thought none of you understood the difference. That was strange!

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Re: Stuck in a rut

Post by Jasmine2 on Sat Aug 23, 2014 8:21 am

He also told me that no other country in the world corrects serum calcium according to albumin levels and he thinks it's a crazy thing to do! 

J x
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Re: Stuck in a rut

Post by mel123 on Tue Aug 26, 2014 5:29 pm

I`m pleased in the UK they look at corrected serum calcium levels as my are always higher than the serum calcium. 

Robert Hardy has replied and says "Your blood results are consistent with hyperparathyroidism.  Scans do not tell us if you have the diagnosis or not, they just help identify which gland is abnormal in some patients, but negative scans do not mean you do not have hyperparathyroidism. I would be happy to see you in my NHS clinic if you could get a referral from your GP or endocrinologist or alternatively I do see private patients without a referral if you did wish to see me". 

I will wait to see what FP and Miles Levy have to say, hopefully soon. But I at least feel now that I am not going mad (as a leading expert agrees with me) and I have options.

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Re: Stuck in a rut

Post by Lucycatnaps on Tue Aug 26, 2014 5:42 pm

Ohh Mel,
I am so happy that he has replied and given you a green light.  I know the feeling of "Am I going totally crackers?"  It makes all the difference when you feel they are taking you seriously and you then are able to make some choices.
Hugs again,
Sue x
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Re: Stuck in a rut

Post by Jasmine2 on Tue Aug 26, 2014 5:45 pm

Yes! Good news from Robert Hardy, Mel! Well done you for going for it! I don't see how you can be denied an NHS referral on the strength of his comments, but in any case if push comes to shove I think it would be a couple of hundred pounds well spent to see him privately and then get referred back into his NHS service, but you're right to keep your powder dry for now and wait to see what FP and Miles have to say.

Jasmine x


Last edited by Jasmine2 on Tue Aug 26, 2014 5:47 pm; edited 1 time in total
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Re: Stuck in a rut

Post by Meggy on Tue Aug 26, 2014 5:46 pm

Excellent news, it's always nice to know you're not going mad:-)

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Re: Stuck in a rut

Post by Little Audrey on Tue Aug 26, 2014 6:13 pm

Great news, Mel! It sounds like this guy knows his stuff! I think you're on your way now!

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Re: Stuck in a rut

Post by Brigitte0 on Tue Aug 26, 2014 6:36 pm

Options are good! Great news. We knew you weren't going crackers but it's uplifting for you that a professional Endo chap actually thinks in the right way! I feel so elated for you! 

Love and hugs 
Brigitte xxx
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Re: Stuck in a rut

Post by Amanda Lynne on Tue Aug 26, 2014 7:03 pm

Well done Mel all you need is the green light from the other 2 then you have a hat trick of Endos Very Happy:D:D
Love Amanda xxxx
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Re: Stuck in a rut

Post by Tigerlily on Tue Aug 26, 2014 7:34 pm

Great news, Mel, and I hope the others reply this week as well.

Love Tigerlily xxxx

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Re: Stuck in a rut

Post by mel123 on Tue Aug 26, 2014 10:08 pm

Yes it`s great news thanks Jasmine for the email addresses and thanks Tigerlily for the links. x

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Re: Stuck in a rut

Post by Johnny1967 on Tue Aug 26, 2014 10:19 pm

Well done Mel, Mr Hardy seems very progressive compared to other endos and surgeons. Good to hear.

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Re: Stuck in a rut

Post by Tigerlily on Tue Aug 26, 2014 11:11 pm

Hello Johnny!!
Welcome back - how have things been for you?

Tigerlily x

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