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Very Interesting Read

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Very Interesting Read

Post by Lucie83 on Thu Nov 06, 2014 3:59 pm

Hi All,

I found this whilst googling today and I thought it was very interesting. Maybe all GP's should take a lead out of this guy's book!

Just reading everything I possibly can for the dreaded docs appointment on Monday, trying to convince the doc I'm not "chasing the HPT diagnosis" as they assume I am Rolling Eyes

Happy Reading!
http://blog.parathyroid.com/doctor-hyperparathyroidism-symptoms/

Lucie xx

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Re: Very Interesting Read

Post by rach260190 on Thu Nov 06, 2014 6:35 pm

Hi Lucie, this is very interesting! It doesn't say much about the pth levels I'm itregued to know, one was raised I wonder if all of them were?! I'm still on a trail of cinacalcet too see if it brings my calcium levels down. I had a blood test this morninf but will have to wait until next week too see if it's back in the normal range again.
Rachel xx

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Re: Very Interesting Read

Post by Tigerlily on Fri Nov 07, 2014 12:00 pm

Hi Lucie

Thanks for posting this link - it's just what I need to take with me to an appointment next week with a Dr who said it was just Vit D deficiency! It says it all really clearly.

Good luck for your consult on Monday!

Hi Rachel

Do let us know how things are going for you on the Cinacalcet. I don't think many forum members have been down this route, so we'd be pleased to hear about your progress with it.


Love from Tigerlily xxxx

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Re: Very Interesting Read

Post by rach260190 on Fri Nov 07, 2014 12:11 pm

Hi tiger lily, 
Yes it's an interesting option I have my first blood test yesterday morning so should find out my pth and calcium levels monday. It was interesting as the nurse asked me do I normally have my bloods taken cuffed or uncuffed. I'm not sure what difference thay makes? So far I feel okay I had a bad stomach the first week but I don't feel any worse and a littke better but who knows yet! Xx

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Re: Very Interesting Read

Post by pilipala on Fri Nov 07, 2014 12:27 pm

Hi Rach,

The Association of Clinical Biochemistry says the following:-

"Blood for measurement of total calcium should ideally be drawn from a vein in which the blood is free‐flowing (that is, without a tourniquet) because venous stasis can result in loss of fluid across the wall of the vein and a relative increase in protein‐bound [calcium]. In practice, 2–3 minutes of venous stasis has a negligible effect." 


Because I am very easy to get blood out of I don't worry too much - It only takes seconds to get a sample. However, for those who have problems and end up being pricked all over like a pincushion for more than a few minutes, a cuff may artificially raise the calcium result and worse still the doctors could argue that your result doesn't count.


Hope that helps clarify things,


Fingers crossed for your results.


Love
Dee
xxx

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Re: Very Interesting Read

Post by rach260190 on Fri Nov 07, 2014 12:31 pm

I see thanks for that Dee! I had it taken uncuffed I think that's what they normally do it should be interesting! My calcium levels are quite variable. 2.69 then up to 2.78 then down to 2.61 then 2.64, 2.70 I know they ate not horrifically high but surely that's still not right. The whole thing is very confusing and too say the least I am confused as the endo has made the diagnosis I have an overactive parathyroid 
rachel x

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Re: Very Interesting Read

Post by Tigerlily on Fri Nov 07, 2014 1:01 pm

Hi Dee & Rachel

Yes, that's what happened to me. I let it slip that it was difficult to draw blood from me and everyone jumped on the thinking that the cuff was probably too tight/on too long because of that, and therefore my high calcium readings didn't count!! My 2cm PTH adenoma would tend to disprove this now.

The final comment of the quote is interesting - that 2-3 minutes of having the cuff on would have only a negligible effect.

Those calcium levels are quite high in my estimation, Rachel. Do you know what the corresponding PTH levels were for each of those? I would say that, with those calcium levels, if the PTH levels (from the same blood draw) are not very low or totally undetectable, then you certainly have a parathyroid disorder. I have a PTH adenoma and my calcium levels do not run quite as high as yours (normally around 2.4-2.68), but my PTH level is always above the top of the range (which for my lab is 6.9pmol/L (x 9.43 for US units) and has reached a max of 13.

If the endo says you have "an overactive parathyroid" then he is almost there with a diagnosis. Perhaps you could ask them what they think is making that parathyroid gland overactive, and could it be a parathyroid adenoma, and could you please have a simple ultrasound to check that out?

Good luck with that, and keep us posted on the results with the Cinacalcet.

Love from Tigerlily xxxx

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Re: Very Interesting Read

Post by rach260190 on Fri Nov 07, 2014 1:16 pm

Thankyou Tigerlilly your knowledge is most appreciated. 
My pth levels are always in the normal range for example 2.9 4.8 with the high calcium levels this is whay they are questioning.  I have had an ultrasound and they couldn't see anything.  However I have osteopenia in my arms and spine. What's your opinions on my pth levels? I'm thinking they should be lower than that?  
Many thanks Rachel x

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Re: Very Interesting Read

Post by Lucie83 on Fri Nov 07, 2014 1:27 pm

This may sound like a crazy question - but is there anything else that could trigger your PTH level to ever be high apart from Hyperparathyroidism? My last Calcium had come right down to 2.33 corrected 2.21 and my PTH was 4.8? It's never in the same sort of numbers everytime and I don't know whether it's normal to jump around?

Thanks

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Re: Very Interesting Read

Post by Tigerlily on Fri Nov 07, 2014 2:15 pm

Hi Rachel

I agree your PTH levels should be lower than they are.

Although your PTH levels associated with the high calcium readings are "within the normal range", they should in fact be very low in their normal range and almost undetectable, if your system is working correctly.

FP would say (forgive the repetition of this quote) that your PTH levels are "inappropriately un-supressed", because when the body is working correctly and calcium is high in its range, then PTH should be very low or completely undetectable.

Osteopenia in your arms and spine should be taken seriously by your medics. I don't know how old you are. I am 62 and have osteopenia at hip and pain in my right forearm which I believe is also osteopenia. And I don't want this to progress to outright osteoporosis anytime soon!

There is also some thinking that longstanding high calcium levels in themselves can contribute to heart disease, and that high PTH levels can also cause other problems further along the line. Our medics and endos should really be aware of these future problems, and not be making us sit around waiting for them to catch up with the patient's take on their situation!

I hope this is the link to Jasmine's paper that she posted this week. It's a fascinating read and will answer a lot of these questions for you:

http://theoncologist.alphamedpress.org/content/19/9/919

Sometimes nothing shows on the scans - US or sestamibi nuclear scans. I was just lucky that my PTH adenoma did show up on US.

Keep us posted on your progress, Rachel, and ask any other questions you need to. I'm sure others will come on and give their views on your situation as well.

Love from Tigerlily xxxx

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Re: Very Interesting Read

Post by Tigerlily on Fri Nov 07, 2014 2:30 pm

Hi Lucie
 
In my view it's not normal for calcium and PTH levels to be jumping around. It makes sense that a PTH adenoma could cause fluctuating levels because its release of PTH hormone is likely to be erratic, and as PTH works in tandem with calcium varying and erratic PTH levels will affect calcium levels too.
 
If your body is working correctly, I don't think that Ca should vary by more than 0.2 of our units. I did read that in a paper somewhere.
 
As you know (sorry to keep repeating myself, but it's for clarity) I have a 2cm PTH adenoma seen on US and am awaiting surgery with FP. My recent serum calcium level was only 2.39 (x 4 for US units) and my PTH was 7.91 (top of lab range for PTH is 6.9pmol/L (x 9.43 for US units). The previous calcium reading to this was 2.68, so my levels are fluctuating quite markedly.
 
Yes, there are other things that can cause PTH levels to be high. Have a look at the Hyperparathyroidism page on www.patient.co.uk to see what these are.
 
The best thing to do is to try and get a good run of Ca, PTH and Vit D test results, and then you will be able to see what sort of pattern emerges. I will post my own results again when I can, because a pattern is visible from them.

Love from Tigerlily xxxx

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Re: Very Interesting Read

Post by Lucie83 on Fri Nov 07, 2014 3:37 pm

Thank you Tigerlily. If only you were my GP Laughing I wrote the Manager of my GP surgery a letter to say I had no support in trying to figure out whether I have HPT, I included FP's email which stated regular monitoring is needed to determine a diagnosis but their response pretty much said I'm chasing a HPT diagnosis and to go in and discuss my symptoms further! Monday I have the pleasure of going to do this!

Thanks
Lucie

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Re: Very Interesting Read

Post by Tigerlily on Fri Nov 07, 2014 4:46 pm

That's progress, in a way though, Lucie. I would go in on Monday and tell them all my symptoms.

Have a look at the symptoms list on parathyroid.com to remind yourself of them in case you have some you may not have registered as parathyroid-related. I wouldn't show them the parathyroid.com list, though, as they don't seem to take kindly to American stuff being thrust at them (I did that!). Just type out all the ones that relate to you.

That paper I mentioned earlier that Jasmine originally posted about:

http://theoncologist.alphamedpress.org/content/19/9/919

- might be a useful thing for you to read and maybe give them a copy of. It mentions reduced Quality of Life and mental health symptoms (which I have in spades!), depression, lack of energy, etc - all those very subtle symptoms that they probably often don't get told about (and can't actually see).

Don't worry at all about what they say to you about chasing a diagnosis - tell them you're only looking at it as a possible diagnosis and would prefer to see it ruled out completely, but until someone can do that for you (especially in the light of FP's opinion) or support you in trying to rule it out (and explain to you why it is being ruled out, if it is) then you are still putting it on the table.

My Addenbrookes endo made all sorts of deprecating comments about me in her letters back to my GP. These are stuck on my medical records now and anyone I consulted for a second opinion afterwards deferred to her "superior knowledge" and told me to get lost. I am really looking forward to the follow-up appointments I have with these particular people now that I have a diagnosis!!

If you don't get any joy on Monday, Lucie, I would ask to be referred to an endocrinologist with an interest in parathyroid problems and calcium metabolism. I wouldn't leave the office there until they agreed to this, and I would probably be so wound up by that stage that a tearful meltdown would appear. These do sometimes get you what you want, as they give in because they themselves are embarrassed by your distress (and the fact that they are unable to help themselves).

Good luck and let us know what happens.

Love from Tigerlily xxxx

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