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HPT or not HPT, that is the question

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HPT or not HPT, that is the question

Post by Meggy on Thu Jul 17, 2014 9:15 pm

I'm so confused, my results are:
Serum Calcium 2.68 (range 2.2 - 2.6)

PTH 11.3 (range 1.6-7.2), down from 46 last time and 60 the time before!

vit D 25 - 50 (previously sub 20).

I've been on Vit D for about 6 weeks so I'm thinking I've got a low vit D causing hyperparathyroidism as my levels are normalising, surprisingly (to me anyway) my ent surgeon thinks I've got HPT and is referring me for ultrasound and sesithingy scan.

I can't figure out why my hpt had come down so much while my vit D is still low tho not as low as it was).

I'm not complaining but it dies seem unfair that my surgeon is so happy with pursuing the HPT route where's others of you who seem to have much more obvious cases are having to fight a battle; very odd.

Meggy

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Re: HPT or not HPT, that is the question

Post by pilipala on Thu Jul 17, 2014 10:29 pm

I'm kinda with your surgeon on this one.

Secondary HPT due to low vit D is distinguished from primary HPT (with accompanying low vit D) by the Calcium level. If the vitamin D is causing the high PTH then your calcium should be mid to low range which it clearly isn't.

How does the vitamin D make you feel? It makes me very happy and I have more energy but it also makes other symptoms worsen such as nausea, headaches, joint pain and dizziness.

Some researchers in the states came up with a mathematical model which helps take into account age and vitamin D status when analysing     Ca and PTH levels. Details are here
http://www.ncbi.nlm.nih.gov/pubmed/22068245

I've put your numbers into the formula and it gives a max PTH of around 6.1 - whereas your actual figure is still nearly double this.

The formula is setup in US units. I've converted for British units (though can't guarantee I haven't made any mistakes) but if anyone else wants to have a go calculating their own personal max PTH here it is....

Max PTH = 12.69 - (2.57xCa) - (0.022xvitD) + (0.028xage in yrs)

I'm guessing your surgeon is most concerned by your calcium levels since that's what going to cause you problems long term with your bones and kidneys etc.

Hope that's not too concerning for you. It sounds like you're definitely in the right place getting treatment etc.

And we're all here to supply cats if you need them  cat  cat ,

Love
Dee

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Re: HPT or not HPT, that is the question

Post by Meggy on Thu Jul 17, 2014 11:10 pm

Thank tou, that makes sense - I *knew* I was missing something. I feel way more alert now but the headaches are a problem and I really ache. I mentioned in another post that my gp says I haven't had a high calcium level (despite my referral coming from a colleague of his for... raised calcium!)

Still really jealous of the cat thing!

Meggy

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Re: HPT or not HPT, that is the question

Post by Tigerlily on Thu Jul 17, 2014 11:22 pm

Yep, I'm totally with Dee on this. Your current PTH is way too high for your serum calcium and your two readings are the same as mine have been. IAnd I have a 2cm adenoma.

Don't worry about the PTH coming down - that was much much too high at 40 or 60.

Get thee to the US and sesta-thingy if you are being offered these by a surgeon who thinks you have pHPT.

Where are you in the UK, by the way, Meggy?

Love from Tigerlily xx

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Re: HPT or not HPT, that is the question

Post by Meggy on Thu Jul 17, 2014 11:44 pm

I'm in Boston, bit of a backwater but the docs do seem pretty clued up which is nice:-)

Meggy

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Re: HPT or not HPT, that is the question

Post by Lucycatnaps on Thu Jul 17, 2014 11:52 pm

Hi Meggy,
I didn't post anything earlier this week as I have been feeling very low after seeing the ENT surgeon on Monday.  I suspect it was the same consultant at Pilgrim, it was for an evaluation of my neck mass.  As I awaiting orals decision he just felt my lymph nodes and not the lump, he said my carotid is very prominent  but that was all! He also read my last lab results and told me that a calcium of 2.69 was "only a little bit high" with a PTH back in the normal range of 3. something and he felt that if I did have a tumour it would be too small for him to operate on.  When I said my PTH was above range in January he said it happens sometimes and maybe my high calciums are due to something else.  I had my endo appt the next day and in contrast I find him very knowledgable and supportive.  My D is low and so he wants me to start taking a low dose of Vit D 800iu, get my bloods checked in 4 weeks to make sure the calcium does not rocket up, made a point of stating make sure the GP prescribes D only and not with Calcium.  I already have some OTC D 1000 iu so will take those 6 days a week which he said was fine.  I have to take for 4 months then repeat the 24 hr urine when D replete.  I have been having some really bad headaches which he suggested I went to a headache clinic via my GP but I feel they are HPT related.  I've only had the D for a few days but already the thirst is coming back  and started to feel sicky again.  I will see how it goes!  It sounds as if you made a good impression as he is requesting the US and scan.  I really hope it shows up when you have it done and can then be on the road to recovery.
Hugs Sue
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Re: HPT or not HPT, that is the question

Post by Meggy on Fri Jul 18, 2014 12:23 am

Sue, my endo is Dr Tarik and my ent is Dr Chelladurai so not sure if that's the same people? I'm not sure how I made a good impression as it was a done deal before I walked through the door, it was just a matter of weighing me (noooooooo!) and him filling out some forms. I've never had to do a urine calcium so not sure if they'll spring that on me, oh joy!

I'm so sorry that you're having a rough time and it's worse that you are having to fight the system too.

Meggy

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Re: HPT or not HPT, that is the question

Post by Lucycatnaps on Fri Jul 18, 2014 12:42 am

Hiya again,
Yes it was Mr Chelladurai that I saw on Monday, all my calciums have been above normal but he felt that was ok as the PTH had come down since January.  I am seeing Dr Eapen as my endo and he is really nice.  I just have to take D for a while and then hope he will forward everything back to Mr FP when I have repeated the 24 hr urine again.  He does not feel I have FHH as according to his scale my urine calcium is above the cut off.  Off to my sewing group tomorrow, my save my sanity days, just wish I felt less worn out to actually produce something.  Have a good weekend and hugs
Sue
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Re: HPT or not HPT, that is the question

Post by Meggy on Fri Jul 18, 2014 12:43 am

Sewing group? That sounds fun. Enjoy xx

Meggy

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