Latest results

Hi

Just wondering if you guys could help to decipher my latest results (still new to all this).  My Endo has said he will put all the results into writing as this information was over the phone.  

Ultrasound scan showed no kidney stones but polyps on my gallbladder, is this a symptom of HPT. As liver function is ok he said no further investigation needs to be done!

Bone density scan shows no osteoporosis at this stage but a low range of bone density in my spine.  He first suggested I could have regular scans to keep an eye on this, unfortunately for him I was having a bad day and instead of crying this time I got angry and said "what wait until I develop osteoporosis".  

Not sure about all my blood results but my corrected calcium was 2.65, HPT around the late 70 and vit D low. 

As he was going along the lines of waiting to see what happens, I said I was not happy to do this. I mentioned my age (41), quality of life, time off work (just over three weeks this year as far, I never normally have any time off) and my long list of symptoms.  I said that all my symptoms were increasing in amount and strength, especially today the palpitations and panic attack feelings, he informed me that palpitations were not a symptom of HPT.  He suggested I needed to go to my doctor to get some anti depressants (this was not the first time that he had suggested this).  I said that I did not want to mask the symptoms, I feel the way I feel due to a tumor growing on my parathyroid and this was what needed to be dealt with.  

After this lengthy discussion he said that he would refer me for a ultrasound scan on my neck and a radio active scan but did not expect to find anything as my calcium levels were only just out of range. He did mention a possible referral to a surgeon after the next set of results.

I feel a little in shock today after all this information.

Take care 

Mel x

First of all Mel - grrrrrrr to that bloomin' doctor - just had to get that out!

If he knows ANYTHING at all about parathyroid disease and interpreting lab results he would know that with a corrected calcium of 2.65, your PTH is inappropriately high, and your Vit D is low because it's trying to bring your calcium down.  What is wrong with these flippin' doctors?  Wait and see, my eye ...!  Reduced bone density is a major clue ......!

At least he's sending you for ultrasound and Sestamibi so that's good, but don't be fobbed off if your scans are negative as they often are, be strong and PUSH to be referred to a surgeon as your bloods and symptoms tell the story, regardless of whether or not they are "just out of range" - 'just' doesn't enter into the equation, your levels are either elevated or they're not!  Silly man ....!

Keep us posted Mel.

Jasmine x

Hi Mel,
 sorry to hear all about this, i just had to write back, before i go to bed ! i am also 41, my corrected calcium has been around your levels, pth highest at 11.7 to 7.5.

i have had 1 neck ultrasound which should i had 6mm thing- i am due to have another ultrasound of my neck, this is 1 year after last scan.
 what i am trying to say is, until they do the scans, they really don't know, my levels  are not as high as some and yet there is a problem.

i don't think people want to believe that you can have parathyroid and be in your 40's this is so wrong as we know from this forum, any age group can have these things.

i am currently under " the wait and see approach" 

my originally GP also didn't think i had any problems, i was told it is anxiety, i questioned my bloods and when i found out the calcium was high, i did some searching on internet and found out about PTH. I than rang GP and asked for PTH blood test, i think they only agreed to get me of the phone. The level shocked them all and was 11.7, so far i have been right about this, i wish i was wrong, but i do believe we know when something is wrong.

i have changed GP, she is really good, listen to me and looked through notes, said i know alot about this and asked me " what should we be doing know" - i said i wanted a repeat neck scan,as last one a year ago, she agreed and i am having scan on may 15.

Keep fighting, don't let the medics get to you, your calcium level etc needs checking, at least you are having some scans done.

Oh and my originally GP said a PTH level of 11.7 which i think is around 110 ish for USA was only marginally high, when endocrine at hospital said pth of 11.7 is high and needs further investigation !

you know you have everyone supports, we all are fighting !

best wishes

Lozza 

Hi 

Thanks Lozza and Jasmine for the information and your support.

Hope your next appointments go well.

Mel

I have a 6mm gallbladder polyp, Mel. They don't worry too much about these. When I quizzed the ultrasound operator about it she said she had one and it disappeared of its own accord.
Unless you are getting right-sided upper quadrant pain (when it might be a gallstone) you might not need to worry too much about it at the moment.
As Jasmine says, though, your calcium and PTH are high and they should not both be high at the same time.
Great to know you are having the neck scans - I haven't got that far yet, as they don't offer these at my hospital unless they are convinced by the biochemistry that HPT is a possibility.
Well done for making the point about not wanting to mask the symptoms - that's a really good point. I have high cholesterol but I'm resisting statins, mainly on the grounds that I have enough cognitive fog already and one of the side effects of statins can be just that in some people.
Good luck with the scans - and keep coming back here for help and support.
Love from Tigerlily xx

Ok, I typed a reply to Mel's post here about an hour and a half ago, and I don't see it anywhere!!! I pretty much said everything Jasmine did there.

When will the doctors learn?!

Yes, Mel, your levels are too high, and I would be willing to bet my life that you do have this dreadful disease and need some surgery to correct the problem.

Jasmine was right on the money about a possible negative scan. I also commented on that in that message of mine that was lost out in cyber space.    I only had 1 scan. It was a Sestamibi scan. It was performed the morning of surgery. It was negative. About 15 minutes later I had 2 tumors removed!

Why, oh why, is this all so hard for these doctors to understand?!!

Audrey

Hi Mel
Your levels are too high, they are similar to what mine were before I had my first op. Reduced bone density is important why do they not understand this.
Keep pushing, keep fighting and you will be believed.
Amanda xxxx

Mel this is so unfair, you shouldn't *have* to keep fighting. Fingers crossed that the scan shows something and you can stick 2 fingers up to the doctor (figuratively or literally; your choice!)