Waiting for results and SO nervous

Hi Everyone,

I have an appointment in 15 mins with the Endo to know results from bloods and 48hr urine collection

Good luck Xxxxxx
A xxx

Hope it goes well.

Nelly xx

Sorry not sure if that whole post came through. Just needed to vent before I went in as tummy doing somersaults with nerves

I think my iPhone has a mind of it's own, apologies I'm not being abrupt

No need to apologize, we have all been there waiting on labs results. Let us know when you can the outcome of your appointment. Best wishes.

As I expected...... I'm normal

Calcium was 2.45, PTH 3.4 (can't remember the ranges) urine collection normal and Vitamin D was over 50! If I continue to feel the same he's happy to see me again and advised ongoing blood tests on PTH.... Gutted and upset!

You must be so disappointed Lucie as it leaves you back at square one but at least he is happy to see you again and to continue monitoring your pth levels. 

Levels do go up and down so you may find that next time they are all out again which will prove something is going on and it can take a long time to finally get a diagnosis so don't give up.

Take care

Nelly

Where is Audrey to calculate the numbers for me, rats I think I figured it out myself. I think US numbers would be 9.8 on cal and pth 30 ish. Labs will often bounce around with phpt  thats the nature of the beast. You will more likely be monitored at this point, but don't give up, the next set of labs may tell a different story. Hang in there.

Lucie, Nellie and Kathi are right, the levels can go up and down like a yoyo. It's good that the Endo is happy to see you again, so you're not being written off and are still on the radar.

Don't lose heart and take care of yourself.

Love
Brigitte x

Thank you Kathi and Nelly & Brigitte. It's so disheartening isn't it although I just knew what the answer would be. He said if the Vitamin D was below 50 then that's usually his indicator and also the excess of Calcium in urine. All I can do is keep monitoring, he didn't have an answer for me as to why my Calcium was 2.55 and PTH 61.7 in my January tests (I was in Oz at the time) but he was genuine and happy to see me again if symptoms continue, which of course they will. Just run out of energy to keep doing this!
Had a good cry in the car on the way home

Had a good cry in the car on the way home

Ahhhhhh replies not submitting properly. Treated myself to a glass of vino tonight..... Back to the PTH drawing board. Thank you everyone, it's amazing support x

Lucie you deserve that vino. I would give it a month or so and ask your GP for calcium and PTH test. That's what I did when I didn't get any joy from 1st Endo before my 1st op and then presented them with a full list of tests and they took me seriously then.
Don't loose heart or hope.
Amanda xxxx

Thank you Amanda. I will, I'm due to go on holiday in a few weeks so after that I will get my levels tested again. The PTH has risen slightly since my last test in Feb but as mentioned earlier, it's a yoyo! I'm 30 years old and just want my energy levels back

Hi Lucie,

I'm mid thirties and feel just the same! I know my body too and being this wiped out is not normal.

My test results have also been bouncing around. In fact my total calcium has never been over 2.52mmol/L. Only when I paid for a private test for ionised calcium did it show it was out of range. But try and I might to explain this to various doctors they just look at me blankly. In fact, I've been discharged from endocrinology and dumped back with the GP. 

My theory is that because I'm young and fit with strong kidneys my body is putting up more of a fight. Hence the fluctuating levels and huge number of 'unspecific' symptoms. Before she discharged me, the endo said, 'I've seen many patients with much higher calcium who don't have any symptoms' Implying that my symptoms have nothing to do with my calcium level. But it's not the overall level that sends your body crazy it's the rate of change. If it was to slowly creep up over many years I might not notice the symptoms, but believe me, I notice them on a daily basis. A clear diagnosis cannot come soon enough. 

I am in awe of the amazing ladies on this forum who have fought with this (and more!) for years before being diagnosed. It's truly an inspiration to think how strong they are and gives me a push to keep going.

Hope you have a great holiday and are able to enjoy some time off.

Sleep well,

Dee

Hi Dee,

You are exactly right in your reply!

I have just had all these tests done privately and at the moment have no plans to go and see him, he didn't even want to arrange any scanning but I agree with you, perhaps it's because we are younger I think the body can put up with more, but I know I certainly do not want to put up with more. I also got discharged from the Endocrinologist in April, hence why I went private. My ionized Calcium has been as high as 2.59 mmol/L but seems to have come down but now seems to stay around the 2.48 mmol/L mark, he said to me my PTH is bang in the middle of the range, but I thought it the PTH glands were working correctly, you should always have a consistent low level?

I will keep going as like yourself, I am inspired by everyone on this Forum who is going through this and continuing to fight, you're all amazing.

Lucie x

Lucie, it is normal for PTH to fluctuate as calcium levels fluctuate. If your normal calcium level is 2.50 and it decides to dip lower, your PTH level will normally rise to get that calcium level back up. However, this was 1 reason Dr. Norman dismissed me the first time I contacted him 4 months after my symptoms became unbearable. Even though my PTH was inappropriately high for my calcium levels, he said it looked like the parathyroid glands were functioning perfectly normally because my PTH increased when my calcium decreased and vice versa. I thought he was making a mistake at that time, and it looks like I was right. A couple of years later, he did diagnose me even though it STILL looked like my parathyroid glands were struggling to function normally. He said I had too many calcium levels in the 10s, and my PTH levels were all inappropriately high. I wish he would have noticed that a couple of years earlier, but I guess he needed more to go on.

Since surgery, I've had my calcium and PTH tested 4 times. Three of those four times, my calcium was STILL 10.0 or above at 10.2, but my PTH is now much lower than it was before surgery. So I guess Dr. Norman is wrong about adults not living with their calcium in the 10s. Unless, of course, I have not been cured yet!   

Audrey

Hi Audrey

How did you get diagnosed in the end? Did you have Urine Calcium checked and Vitamin D?

Lucie

Well, Lucie, yes, I did have my urine calcium checked twice, and that also was normal both times! I was a very tough case to diagnose, I guess. My vitamin D was low and low/normal throughout the 3 years I was trying to get diagnosed, except for the few months when I was taking 50,000 IU twice weekly, during which time it rose to 99! I finally got diagnosed because Dr. Norman noticed my PTH levels were always too high for my calcium levels. For instance, the first time my PTH was tested 3-1/2 years ago, it was found to be 112.0, but my calcium was only 9.8. Two months later my PTH was 71.7, and my calcium was 10.0. A month later my PTH was 55.2 with a calcium of 10.1. I might also add that those 3 times, my vitamin D was 34, 28, and 25, in that order. So obviously, my body was lowering my vitamin D as my calcium was rising. As I mentioned previously, Dr. Norman did not diagnose me the first time because my PTH kept decreasing as my calcium increased. I was so very surprised when he dismissed me, because I knew from all of my research that my PTH levels were too high for those calcium levels! After he dismissed me the first time, i was very reluctant to contact him again. I was so afraid of another rejection, and I was in such a state, I knew I couldn't handle that. I had my calcium and PTH tested 16 more times over the next 2-1/2 years. During that time my calcium slowly rose, and my PTH stayed much too high for those levels. I finally mustered up enough courage to contact him again! He told me at that time that I had way too many calcium levels in the 10s. That I did indeed have a parathyroid tumor (I actually had 2), I did need surgery, and he would be more than happy to take care of that for me.

If you have not checked out Dr. Norman's website (parathyroid.com) you really should. It would help you immensely. I know Dr. Norman states that the younger you are, the higher your calcium should be, so I cannot compare your levels with mine since I am 61 years old, but he has charts on there which should help you sort this all out.

I just went back and took a look at your previous lab results. I noticed that you had a calcium level of 2.56 (10.2 in US numbers) with a PTH of 32.2. I don't think those levels are quite high enough for a diagnosis.    I had a calcium of 10.2 post-op with a PTH of 31.7, which is very similar to your levels. When I entered those numbers into the normogram, it stated that HPT was unlikely. However, you also had a PTH of 61.7 in January of 2014, but you didn't have your serum calcium tested at that time. Without the 2 together, no diagnosis can be made, unfortunately. If your calcium was still as high as 2.56 with a PTH of 61.7, that would certainly make a huge difference in diagnosing! Before my surgery I had a calcium level of 10.2 three different times. Those 3 times my PTH was 56.1, 47.5, and 62.5. So if your calcium would have still been at 2.56 when your PTH was 61.7, that would indicate hyperparathyroidism, but, again, your age would play a big factor in this, and I would have to check Dr. Norman's charts again to determine whether or not your levels are too high for your age. As a matter of fact, I'm going to do that right now, and I will get back to you.

I think your best bet would be to have your calcium AND PTH tested at least a few more times, and make sure they are tested from the same blood draw. That is the only way to diagnose this. If you would have an elevated urine calcium, that would certainly help also!

Audrey

Ok, Lucie, I just checked Dr. Norman's chart. According to that, a 30-year-old person could have a calcium as high as 10.3 and still be considered normal. That would be about 2.6 in UK numbers. This does not mean you don't have hyperparathyroidism. It just means that it probably wouldn't be diagnosed with that 1 particular set of levels you have listed here on the forum. Again, if your calcium would have been that high with that PTH level of 61.7, that would greatly help with a diagnosis, but you had no calcium check during that particular blood draw. I would be very interested to see a few more future sets of lab results from you.

Audrey

Hope this all helps. Don't give up. It just might take a bit longer to diagnose!

Hi Audrey.

Thank you, your response has been really helpful. I check Dr Norman's website most days, it's very educational. I downloaded the Calcium Pro App, I entered all my details, unfortunately I don't have Ionised Calcium levels so I entered Calcium Corrected levels along with PTH levels and it came back with "very likely". I'm hoping to receive my results today from Tuesday and I will post these.
When I had the PTH level of 61.7 my Calcium was tested at 2.49 but Calcium Corrected stated - "No Result: calcium corrected is only reported if the Albumin lies outside the range 40-45 g/L" it came back as 44 g/L. However, when I showed these results to my consultant he advised that because my Vitamin D was high and he thought maybe the cause of this is raising my Calcium, my PTH level should be low but it was 61.7.
Having looked at Dr Norman's charts, my levels are in the brackets of people operated on for Hyperparathyroidism so I get very confused and doubtful obviously, when the consultant tells me I don't have HPTH. I'd accept that if I didn't have any HPTH symptoms.

Thank you again Audrey, you know you're HPTH business

Hi Lucie

Ionized calcium is not used over here and I would guess putting your corrected calcium in the app has given you a false reading. If your albumin is in range then the corrected result would come out the same as the serum result so it would still have been 2.49.

Personally I don't think chasing a diagnosis right now is going to get you anywhere as your levels are more or less normal with an occasional blip so it would be extremely difficult to convince an Endo that you had hpth. I would keep monitoring calcium and pth and see what happens, when you get some more high results then start banging on doors again.
Also ask your GP what he is going to do about your persistent symptoms, put the ball in his court and hopefully he will test for other causes which will rule things out giving you more clout with the hpth theory when you next see an Endo.

It can be a long struggle to get a diagnosis especially if you are borderline but you have to keep plugging away at it until you get a result.

Nelly

You're quite welcome, Lucie.   

I agree with Nelly about using your corrected calcium in place of the ionized calcium. I don't think that would work properly. The difference in those numbers might make a difference in the results.

If your PTH was 61.7 when your calcium was 2.49 (9.96 in Us numbers), I am wondering if your normal calcium might be 2.50 or a bit higher, and that is why your PTH was as high as it was when your calcium dipped to 2.49. Maybe your parathyroids were trying to get your calcium back up to 2.50. Only time will tell if there is a parathyroid problem here. Unfortunately, sometimes it takes quite a while before it talks!!! Keep getting those levels checked. If you have the symptoms, there's a good chance that eventually your levels will get to a point where you can be diagnosed. Good luck!

Audrey