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All results & should I take up the scan offer?

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All results & should I take up the scan offer?

Post by Lucie83 on Fri Jun 06, 2014 5:10 pm

Hi Everyone,

I just wanted to post all my results to date, although I have been reassured I don't have HPTH, I did have 1 result that could of been a possibility but I'm told it's now unlikely. I apologise as the Units will differ as I had some tests done during my time in Australia, I also had a reply from the Endo and I will post this and I'd love for you all to give me some of your thoughts.

Australia
Dec 2013:
Calcium 2.56 (Range 2.10-2.55 mmol/L)
Calcium Corrected: NR40 = Corrected Calcium only reported if Albumin lies outside the range 40-45 g/L
Albumin: 45 g/L
Phosphate: 1.33 (Range 0.74-1.52 mmol/L)
PTH: 32.2 (Range 15.0-68.0 Ng/L)

Jan 2014:
Calcium: 2.49 Range 2.10-2.55 mmol/L)
Calcium Corrected: NR40 = Corrected Calcium only reported if Albumin lies outside the range 40-45 g/L
Albumin: 44 g/L
AST: 40 U/L (12-36 U/L)
ALT: 72 U/L (<55)
PTH: 61.7 Ng/L (Range 15.0-68.0 Ng/L)
Vitamin D: 140 nmol/L (Range 50-130)
Phosphate: 1.10 mmol/L (Range 0.74-1.52 mmol/L)

UK
Jan 2014
Calcium: 2.55 mmo/L (Range 2.20-2.60)
Calcium Corrected: 2.49 (Range 2.20-2.60)
PTH: 2.4 pmol/L (Range 1.1-6.9)
Serum Phosphate: 1.00 mmol/L (Range 0.8-1.4)
Serum Alkaline Phosphatase: 51 iu/L (Range 35-105)
Albumin: 47 g/L (35.0-50.0)

Mar 2014:
Albumin: 52 g/L (Range 35-50)
Serum Alkaline Phosphatase: 47 iu/L (Range 35-105)
Serum Total Protein: 81 g/L (Range 60-80)

May 2014:
Calcium: 2.51 (Range 2.20-2.60)
Calcium Corrected: 2.45 (Range 2.20-2.60)
Vitamin D: 108 nmol/L
PTH: 3.5 pmol/L (Range 1.1-6.9)
Albumin: 49 g/L (Range 34-50)
Alkaline Phosphatase: 45 IU/L (Range 35-105)

Urine Calcium: 3.28 mmol/L
Calcium / 24hrs: 7.48 mmol/24hr (Range 2.5-7.5)

Urine Creatinine: 5.6 mmol/L (Range 8.0-12.5)
Creatinine / 24hrs: 9.3 mmol/24hr

Sorry this is so long. These are all my results to date, I haven't included the elevated Calcium blood tests that don't have a PTH tested also. If anyone can advise on the 24hr Creatinine and Urine?

I'll now post the reply from the Endo. What do you guys/gals think? Just to add to this I'm having terrible pain in my hip bone, kept me awake!

"Even in an intermittently secreting parathyroid adenoma, I cant see how all
the tests (as we have recently seen) can be plumb normal - particularly no
raised urinary calcium which is a really important test.
If you want further reassurance, I'm very happy to arrange Sestamibi and USS
tests - in theory they shouldn't be done in the presence of normal bloods,
and if it did show evidence of a potential adenoma, I think it would be
difficult to justify operating (as operations are there to normalise
calcium, and yours is normal)
The problem is that there are times when we know there is an adenoma
biochemically, but the tests are negative.
What I am more concerned by is the thought that no one really knows what is
causing your fatigue / unwellness, and that by concentrating on proving /
disproving the Calcium story, no one (cleverer than me!) is looking for
other reasons!
Let me know what your thoughts on imaging are - happy to book if you like.
But you / we need to consider actions based on the result - if they are (as
they will be!) negative, will that reassure you enough; if there is any
evidence of an adenoma, we would have to seriously work out how to justify
an operation in light of a normal calcium....

I leave it with you"

Lucie83

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Re: All results & should I take up the scan offer?

Post by Little Audrey on Fri Jun 06, 2014 5:48 pm

First of all, Lucie, you don't have to have elevated urine calcium to have HPT. As I've posted before, I had two 24-hour urine calcium tests done, and both were perfectly normal, even though I had 2 parathyroid tumors in my neck!

Secondly, you don't need a positive scan to have surgery. I only had 1 scan. It was performed the morning of my surgery. It was negative!

Thirdly, if an adenoma is revealed during a scan, I would think it should be removed!

I am not sure how your doctor is thinking here. Again, I don't understand why this is so hard for doctors to understand. Maybe I should write a letter to your doctor!

I do see why he is doubting you have HPT, because your levels don't really look bad at this point, but if you keep getting your levels checked, and you do have HPT, eventually it will be revealed by the labwork, and it will be diagnosed.

Audrey

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Re: All results & should I take up the scan offer?

Post by Lucie83 on Fri Jun 06, 2014 5:56 pm

Hi Audrey,

Is it me, am I missing something with the Urine Collection result for 24hrs, is it not high end of normal or am I getting the results the wrong way around? It's probably me, I can't work a lot of things out at the moment.

I do agree though Audrey, my levels don't scream HPT but my Calcium levels haven't dipped below 2.45, I know that is acceptable but I've had 1 test in the 10's (using Dr Norman's words) and I certainly do not understand if there is an Adenoma there, what needs justifying, it needs removing!

I don't expect this whole business to go my way in the slightest, if I have the scans I know they'll all be negative, it's just my luck!

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Re: All results & should I take up the scan offer?

Post by pilipala on Fri Jun 06, 2014 6:18 pm

Dr Audrey has good advice - I'd transfer to her clinic if I could.

Some other thoughts. We all want to feel better, in the absence of feeling better we want answers, and in the absence of answers we want a plan. So I can totally get your need to do something. On that basis, I would probably do the scan whilst mentally preparing myself for a negative result. As Audrey says a negative result neither confirms or denies the presence of an adenoma so worst case result is you are no clearer.

Also, why can't they be investigating all avenues at the same time, so that if it was something else you can get it sorted and if it isn't you're not delaying treatment. (If it is something else, please let me know, we have such similar presentations - I'd love to know!)

One other thing. I was plagued by hip pain. It was the first reason I went to the doctors. However, I discovered (accidently) that it greatly lessened if I stopped having milk and cheese. This was well before I had even heard of PHPT. (I also think working very hard at physio has helped repair and strengthen the bone too.)

I played around with removing all dairy, adding in different things etc and concluded that the worst offenders were cream, full-fat milk and cheese. I now realise these are all sources of good vit d and calcium and therefore the calcium is more readily absorbed. I don't eat fish but I would predict a similar effect.

Maybe you don't eat these anyway so it's not a problem for you but I'd be interested to know. I can feel the effects within a day. I now eat minimal dairy (yoghurt mostly, dairy in baked goods etc) so I don't lose the ability to digest lactose, and lots of leafy green vegetables to make up the calcium.

Love
Dee

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Re: All results & should I take up the scan offer?

Post by Jasmine2 on Fri Jun 06, 2014 6:31 pm

Hi Lucie

If I'm right, and jump in if I'm wrong anyone, your urine calcium at 3.28 is in the lower end of the normal range which is what your endo is looking at.  I think you might be looking at the higher number of 7.48 and yes that is at the high end of the range, but the lab do a further calculation on that number based on the amount of urine you produced over 24 hours, hence the measurement of 3.28.

Re justifying a referral for surgery, unfortunately for us NHS guidelines dictate that a surgical target must be identified, either by biochemistry evidence of primary hyperparathyroidism with serum calcium and unaccommodated (inappropriately high) PTH above a certain number in the absence of localisation of the adenoma (ie positive scans), or positive scans in the absence of confirmative biochemistry.  

It seems to me that your endo seems more concerned that a consultant from a different specialty should be looking for other causes of your symptoms instead of properly ruling out PHPT first.  Go for the scans if I were you, ultrasound and Sestamibi, and if they're negative along with normal biochemistry (well, normal as far as PHPT is concerned) then perhaps you should consider looking at other causes, whilst still having repeat calcium, PTH and Vit D bloods to keep an eye on the PHPT option.

Hope this helps?

Jasmine x
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Re: All results & should I take up the scan offer?

Post by Lucie83 on Fri Jun 06, 2014 6:45 pm

Hi

Yes this all helps, I agree, take the tests and if they are negative, which I know they will be, it will draw a line under HPTH and I'll just keep monitoring the levels as well as banging on the door of my GP for answers.

Thank you

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Re: All results & should I take up the scan offer?

Post by Johnny1967 on Fri Jun 06, 2014 7:13 pm

I don't think the scans mean much either way. People have enlargments to.various glands which are non-functioning ie not producing extra hormones. I have one of these on my left adrenal for example. Same with some thyroid nodules. Three are just anomalies in our make up. The parathyroids are the same. An enlarged gland does not always indicate surgery.

The other side of the coin is that nothing turns up on the scans.

My numbers are v similar to yours Lucie total ca slightly elevated pth mid range. I have had extensive tests for all sorts of things. How I wish my pth wd nudge up.

I think your endo is trying to.reassure you with getting negative scans but not sure that helps.

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Re: All results & should I take up the scan offer?

Post by Brigitte0 on Fri Jun 06, 2014 8:41 pm

Hi Lucie

I can't say much more than anyone else except that I think you should definitely have the scans, whether they show anything up or not. And I think that testing your calcium and pth will be done anyway because of your age: doctors and endos are supposed to keep a tag on you if you're under 50 anyway. I feel bad for you, because all this while you're feeling so ill and not getting a lot of help. I do think there are some positives here in that they have offered scans etc. It's difficult I know, but hang on in there!

Take care.

Love
Brigitte x
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Re: All results & should I take up the scan offer?

Post by Lucie83 on Fri Jun 06, 2014 9:07 pm

Thank you everyone. I will keep you posted :-)

Just a question, does anyone get leg/calf aches? Had it about 10 months ago and it seems to have started again. Feels like my circulation isn't flowing properly and my feet are ALWAYS cold when I have no socks on. Anyone else get weird feelings like that?

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Re: All results & should I take up the scan offer?

Post by Jasmine2 on Fri Jun 06, 2014 9:32 pm

Yep, I go through phases of really bad cramping in my calf muscles although I don't get cold feet.  Are your feet shiny and white as well as cold? If so, and it becomes really troublesome, I would ask your GP to refer you for a Doppler Ultrasound scan to check the circulation in the veins in your legs.

Jasmine x
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Re: All results & should I take up the scan offer?

Post by Lucie83 on Fri Jun 06, 2014 9:45 pm

Hi Jasmine,

No feet are not white or shiny, just feels like I've done miles and miles of walking some days when I haven't. Oh how to feel normal :-)

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Re: All results & should I take up the scan offer?

Post by Little Audrey on Sat Jun 07, 2014 12:59 am

Oh yes, cramping muscles were 1 of my most bothersome symptoms!

Yes, Lucie, I forgot to mention that I to think you should go for the scans. It can't hurt. After struggling for years to get diagnosed myself, I had asked my endo about a Sestamibi scan. I figured if nothing was revealed, I would be no worse off than I was at that point. She gave me a script, but I never went for the scan. Shortly after I saw her, Dr. Norman finally diagnosed me, so I just wanted to have my scan performed in Tampa.

And, by the way, my clinic is open, and you won't have to wait months for an appointment! Now, if I could just learn how to use that darned knife!!  Laughing 

Dr. Aud


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Re: All results & should I take up the scan offer?

Post by Tigerlily on Sat Jun 07, 2014 7:37 pm

Hi Lucie

I agree - go for the scans. HPT should be diagnosed on the blood test results and scans only used to locate tumours before surgery, but we have to take what we can get.

I'll be having an US scan next week at last and hope that by this time (15 months after HPT was first mentioned, but not proceeded upon) the thing will light up like the proverbial Christmas tree.

Do some research on normo-calcaemic HPT and see if your blood results for calcium and PTH are both elevated in their respective ranges at the same time from the same blood draw, which is a clue to this type of presentation of HPT.

I would also check, if you haven't already, that you are not Type 2 diabetic. It's a simpler test of blood glucose. Unlikely that you are, but worth ruling it out.

When we reach this forum, we tend to really cling on to a diagnosis of HPT beause it seems to tick all the boxes - fatigue, depression, anxiety, reduced cognitive function, etc. I did it myself, and then when I couldn't get a diagnosis, I went down all sorts of avenues to try and understand why I felt so grim - pituitary problems, etc etc. But after 15 months a rheumatologist has at last come up with a diagnosis of normocalcaemic HPT - a "club" that other medics would not let me into themselves.

Hang on in there, Lucie, cherish your endo who will at least discuss these matters with you, doyour research, have regular blood tests for Ca/PTH/Vit D, and keep coming back here with info on your results, because someone here will come up with ideas for you. A lot of us have been led around the block many times, so we regard ourselves as a good resource for others, and that means you!

Love from Tigerlily xx

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Re: All results & should I take up the scan offer?

Post by Lucie83 on Sat Jun 07, 2014 8:18 pm

Hi Tigerlily,

Thank you for your response. Pleased you are finally getting your US and hopefully it will hit the nail on the head.

I was honest with the Endo, I said although he thinks it's unlikely I have HPTH, he did confirm on 1 set of results that he wasn't ruling it out so for my own sanity, I'm going ahead with the scans but obviously am prepared for the evidence of showing nothing, I have nothing to lose at this point. I'm at a private hospital at the moment which is why things are moving fast.

I am due to go to the GP next week and I'm going to ask for some deficiency blood tests, although I had some done in Jan and there wasn't any concerns, it won't hurt to check again.

Tigerlily - Have you had any Urine tests done?

Hope to hear from you soon

Lucie x x

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Re: All results & should I take up the scan offer?

Post by Tigerlily on Sat Jun 07, 2014 10:10 pm

Yes, Lucie - these were my results:

Urine volume: 1313 mL
Urine Calcium: 6.2 mmol/L
U/Ca per 24 h: 8.14 mmol/24 hr (Range: 2.50-7.50 mmol/24 hr

I think I read that normal per 24 hr for a woman is around 5 mmol.
This reading of 8.14 was flagged up by the lab with an exclamation mark as it was outside the top of the range.

Your level is very near the top of the range, and not like the normal level of 5 mmol for a woman.

Lucie, in my head I would be prepared for the scan actually to show something, rather than nothing!
I'm doing that myself for my US scan on Wednesday. I really do need it to show something now.
But even if it shows nothing, it doesn't mean that there's nothing there - just that it didn't show up on that particular scan.

Keep us posted on developments.

Love Tigerlily xx

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Re: All results & should I take up the scan offer?

Post by Lucie83 on Sat Jun 07, 2014 10:14 pm

I was getting confused with my results - the Endo said mine were fine but I've posted them as exactly how they are on the result sheet and I thought my Calcium was top end of range?

Lucie x

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Re: All results & should I take up the scan offer?

Post by Tigerlily on Sat Jun 07, 2014 10:42 pm

Yes, Lucie - your Ca is top end of range as mine has always been, but your PTH measured in the UK is about right in its range. Calcium and PTH live in an inverse relationship with each other when the human system is working correctly - when calcium is raised, PTH should be lower in its own range.

Your albumin is always quite high, as is mine, which is a good sign for general health, but it means that when your serum calcium is "corrected" for the high albumin, the lab usually "corrects" the serum albumin downwards. And an endo will usually only take notice of the "corrected" calcium level, which in our cases is lower than the serum calcium.

I've no experience with the urine calcium and creatinine, so perhaps someone else will jump in here.
Where are you, DR AUDREY!

As you have a sympathetic endo (something a lot of us would lurve to have!) I would accept the ultrasound scan he is offering in case it rules anything in, remembering of course that these are not definitive, as these adenoma are quite adept at hiding, and the scans themselves depend on the skill of the US operator.

I always think that whichever way it goes, it is a win-win situation for me. If HPT gets ruled out, then I don't have to have an operation; if it gets ruled in, then at least I know what I'm dealing with and can go forward on that basis and make decisions accordingly.

Got to hit the sack now - keep asking THE questions, Lucie, we're here to try and help.

Love from Tigerlilyxx

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Re: All results & should I take up the scan offer?

Post by Kathi209 on Sun Jun 08, 2014 1:23 am

Lucie I agree with Tigerlily go for it. You really have nothing to lose, except maybe a parathyroid adenoma. Best of luck  Kathi

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Re: All results & should I take up the scan offer?

Post by Lucie83 on Sun Jun 08, 2014 7:44 am

Thank you Kathi & Tigerlily. I'll keep you posted, now let's all enjoy the sunshine today with a BBQ and a cheeky glass :-)

Xx

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Re: All results & should I take up the scan offer?

Post by Tigerlily on Sun Jun 08, 2014 9:50 am

OOOPS - TYPO (WORD-PO?) IN MY POST ABOVE:

Should read: "Your albumin is always quite high ................ "corrects" the serum CALCIUM downwards.."

Sorry, calcium, not albumin.

Tigerlily xx

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