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My Calcium and PTH levels over the past 3-2/3 years.

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pilipala
Little Audrey
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My Calcium and PTH levels over the past 3-2/3 years.     Empty My Calcium and PTH levels over the past 3-2/3 years.

Post by Little Audrey Sun Aug 17, 2014 1:37 am

It has taken me a while to do this, but I had said previously on another thread that I would post my levels, in hopes of possibly helping someone else to get a diagnosis.   So here they are.   The first set of results was revealed from blood drawn on 12/8/10 and the last set was revealed from blood drawn on 8/13/14.   I would like to add here that when the vitamin D level is over 50, it was because I was taking vitamin D supplements.   And as you can see, my calcium didn't seem to rise when the vitamin D did, as we are led to believe it should.

For those of you in the UK who need to convert these levels, you will need to divide the calcium levels by 4 and divide the PTH levels by 9.43.   Sorry I didn't do that for you.   Wink 

Also note that my calcium was exactly the same when tested right before surgery and right after surgery.   The difference being that the PTH level had been cut by more than half.      

Another reason I had trouble getting diagnosed beside the facts that my ionized calcium was never elevated, I had no kidney stones, I didn't have osteoporosis or even osteopenia, and my albumin and phosphorus never looked abnormal, was because my PTH seemed to increase when my calcium decreased and it seemed to decrease when the calcium increased.   This is what normal parathyroid glands should do.   However, obviously, even when the glands seem to be functioning normally in that respect, if the PTH level is still inappropriately high for the calcium level, HPT should be diagnosed.   I proved that point when my 2 tumors were finally removed.    

12/08/10 --  Calcium 9.8, PTH 112.0, vit. D 34.

2/03/11  --  Calcium 10.0, PTH 71.7, vit. D 28, ionized calcium 5.0.

3/07/11  --  Calcium 10.1, PTH 55.2, vit. D 25, ionized calcium 5.2.

4/28/11  --  Calcium 10.0, PTH 49.5, vit. D 43.

8/10/11  --  Calcium 10.5, PTH 55.9, vit. D 78.

10/10/11 -- Calcium 10.3, PTH 36.3, vit. D 86.

11/23/11 -- Calcium 9.9, PTH 110.0, vit D. 98.

1/11/12  --  Calcium 9.9, PTH 65.6.

2/06/12  --  Calcium 9.6, PTH 50.0, vit. D 69.

3/23/12  --  Calcium 10.1, PTH 47.2, vit. D 79.

6/01/12  --  Calcium 10.2, PTH 56.1, vit. D 68.

8/28/12  --  Calcium 10.1, PTH 45.4, vit. D 99.

10/01/12 --  Calcium 9.5, PTH 79.2, vit. D 73, ionized calcium 5.1.

1/10/13  --  Calcium 10.6, PTH 49.7, ionized calcium 5.4.

3/29/13  --  Calcium 10.2, PTH 47.5, vitamin D 52, ionized calcium 5.4.

5/23/13  --  Calcium 10.3, PTH 68.0, vitamin D 37, ionized calcium 5.3.

8/02/13  --  Calcium 10.7, PTH 65.7, vitamin D 48, ionized calcium 5.3.

9/27/13  --  Calcium 10.4, PTH 42.0, vitamin D 47, ionized calcium 5.3.

10/17/13 -- Calcium 10.2, PTH 65.2, ionized calcium 5.2.

11/14/13 -- SURGERY.   TWO PARATHYROID ADENOMAS AND 1 THYROID NODULE REMOVED.  POST-OP PTH 28.0.  CALCIUM NOT TESTED.

12/20/13 --  Calcium 10.2, PTH 26.8.

2/10/14  --  Calcium 10.0, PTH 38.0, ionized calcium 5.2.

3/20/14  --  Calcium 10.0, PTH 31.7.

5/12/14  --  Calcium 9.9, PTH 42.0, vitamin D 40.

8/13/14  --  Calcium 10.0, PTH 22.0, vitamin D 99.

Well, there you have it.    I hope this helps someone somewhere.    I had to fight like #@!! for my diagnosis.   I hope this speeds up your diagnosis in some way.    Print this and take it to your doctors!

Audrey


Last edited by Little Audrey on Tue Aug 19, 2014 11:03 am; edited 4 times in total

Little Audrey

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Post by pilipala Mon Aug 18, 2014 10:41 pm

Dear Audrey,

This is super helpful and it encourages me to know that you have fought the pHPT and come through the other side.

My calcium isn't rising with my vitamin D, in fact it seems to be falling as my vitamin peaks. I notice your levels went up and down - are these fluctuations in line with summer/winter? i.e. was your calcium highest in winter? This seems counter-intutative but concurs with my results.

Best wishes,

Dee
xxx

pilipala

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Post by Little Audrey Mon Aug 18, 2014 11:04 pm

Well, I'll have to review my records again and check that for you, Dee. I never thought about that. I'll let you know soon.

Audrey

Little Audrey

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Post by Little Audrey Mon Aug 18, 2014 11:36 pm

I added the dates for you there, Dee. It doesn't look to me that there was any real pattern with the higher calcium levels. Two of the highest ones were in August of 2 different years, but one of the highest was in January.

Audrey

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Post by Meggy Tue Aug 19, 2014 10:25 am

Thanks for all of that Audrey, must have taken ages to type! I haven't got my most recent results yet but after a month on Vit D supplements my PTH had fallen from 44 to 11 in UK figures (multiplied by 9.43 to get the US figures...that can't be right surely??!) but my calcium is unchanged and like the rest of you I thought that would go up. Of course it would help if they'd done the Vit D at the same time but I think the bottle got broken or something cos I had to go back again to have an extra sample taken.

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Post by Brigitte0 Tue Aug 19, 2014 1:56 pm

I asked for Vit D to be done at the last blood test Meggy. Everything went up for me, calcium, PTH, Vit D, except albumin which went down so it's only just in normal range. I don't really know what that means though.

I don't really think my blood results have cared whether it's summer or winter. As far as I'm concerned they're telling the medical profession to hurry up and get that adenoma out  affraid 

Love and hugs 
Brigitte xx
Brigitte0
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Post by Tigerlily Mon Aug 25, 2014 11:49 am

Audrey - that is so useful - thank you for posting these results. I can understand how long it took you to do it!

I was warming to the possibility this morning of writing my bombshell letter to MdaK - just savouring what I would say and how I would put to him the fact that an adenoma was revealed on the US scan he wouldn't let me have.

Is it alright with you to include your results (anonymously, or course) in my letter to him, with a view to trying to educate him? I'll include mine as well so that he'll have at least 2 sets of results to examine.

Hope your next consult with Dr Nephro is successful and that you are hanging on in there between now and then.

Love from Tigerlily xxxx

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Post by Little Audrey Mon Aug 25, 2014 12:07 pm

You're quite welcome, Tigerlily. I know how hard I had to fight for my diagnosis. Nothing would make me happier than knowing I could help someone else in some way. Please feel free to include my levels in your letter. Heck, I wouldn't even care if you sent my name, address, and phone number!

By the way, maybe you could mention to him that I'm still waiting for my reply! I sent him an email about a year and a half ago. He never bothered to reply.

I'm hanging in there. I've had several very rough days. I'm VERY weak, VERY nauseous, and my stupid ears are still hurting which isn't helping, but I'm not afraid of a good fight, so fight I will!! I will be going for my new bloodwork on Wednesday. I will pick up yet another 24-hour urine jug at that time. I will see my little Nutty Professor on the 9th. I can't wait!

Tomorrow I have an appointment with the ENT doc. Can't wait to hear what she has to say about my ears hurting for weeks!

Good luck with that letter. Let him have it right between the eyes!! These doctors need to wake up!

Audrey



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Post by Tigerlily Mon Aug 25, 2014 6:47 pm

Thanks, Audrey - I'll put a word in about your missing reply from MdaK if I get the chance!

Good luck with ENT doc tomorrow.

Love from Tigerlily xxxx

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Post by mel123 Tue Aug 26, 2014 6:13 pm

Audrey thank you for posting your blood results, my calcium has lowered as my vit D has risen (due to supplements). Good luck with your ENT appointment tomorrow. 

Dee, I had a theory that my calcium levels would rise in winter again, time will tell. 

Take care everyone x

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Post by Little Audrey Tue Aug 26, 2014 6:19 pm

You are all quite welcome. I do hope my numbers can help you all in some way. flower

Audrey

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