Bone density scan

Hello everyone,
I wondering why my local hospital and endocrinologist hasn't offered me a bone density scan, as i have had all the scans (negative) PVS, and numourous blood tests (highly suggestive for Primary Parathyroid) I would like to know over the past 2 years if my bone density has changed, it was talked about at the first appointment and then forgotten! 
How has Parathyroid Disease affected all of you regarding bone density, i would be grateful for any feedback as i am slightly worried as i have bone aches in the legs, arms, and lower back.

Many thanks
Mealinacup.

Hi mealinacup

I had a scan which showed osteopenia and that plus a kidney stone clinched the deal. I have had back problems for many years which I'm not convinced is down to hpth.

I'm not really sure what bone aches are, i have pain in my ankles and knees first thing in the morning but it wears off, is that bone or joint pain ? my back ache is fairly constant but i have had it so long it doesn't really register any more, it's just there.

Osteopenia is a major factor for being accepted for surgery as they don't want patients going on to develop osteoporosis. 

I would definitely remind your doc about a dexa referral.

Nelly

Hi mealinacup,

I never had osteoporosis or osteopenia, but I did have a LOT of bone pain in my forearms and shins. I had a bone scan done 5 years ago, and I had 1 done last year. The most recent one did show quite a bit of decreased bone density, but it still was not even considered osteopenia. I guess I was lucky my HPT was caught before my bones got really bad.

Audrey

I had a bone scan earlier this year and it shows osteoperosis which I am stuck with  but to be honest I know very little about it.  The main thing I concentrate on is not falling over as my doc says I will surely break a bone if I do.   I expect I will have anaother scan early next year to see how it is all going but hopefully it won't get any worse now I have had my thyroid and one parathyroid out.  I still have pains in the tops of my legs but they seem to be very different now to what they were before the op and they are no where near as debilitating.

Here in Australia there are certain criteria before a bone scan can be done.  All to do with scan results, blood results and age etc.  I don't know about over in the UK.

Hi Mealinacup
When this phpt mess first started for me my Dexa scan was normal that was over 3 years ago, my last Dexa scan showed osteopenia in my spine that was in June of last year. I have bone aches in my hips not pain really it will at times just ache. I thought I would have osteopenia in my hips but no just my spine. You should get a Dexa scan if nothing else it will give you a baseline.

I had Dexa scan prior to 1st operation and it showed osteopenia in spine.
Amanda xxxx

Hi mealinacup 

I haven't had a bone scan yet, but my Endo recommended I have one when I saw him last week to provide a baseline. His reasoning was because of my Vit D deficiency and mainly because I haven't been through menopause yet. 

Love 
Brigitte x

Hi mealinacup

A bone scan was one of the first referrals i had, I have not done a 24 hour urine test yet. I have dates for a sestamibi scan and a ultrasound scan on my neck (already had one to check my kidneys).  I suppose it depends where you live. I live in Derbyshire where do you live?

I was informed over the telephone by the locum endo that I had low range bone density in my spine after my first bone scan in April this year.  

Does anyone know if this is classed as osteopenia or not?

I will see a different locum in June and I will ask for the stats and how regularly (or if) I will have bone scans and if this result along with my age will meet the criteria to be referred to a surgeon. I do hope so!!!

Love 
Mel

I can't remember the degree of bone loss that is needed to be considered osteopenia, Mel. I will go check my old test results and let you know.

Audrey

Ok, I'm back with the info. I'm not sure if you all measure bone density the same as us here in the US, but here, Normal is a T-score at or above -1. Osteopenia is a T-score between -1 and -2.5. Osteoporosis is a T-score at or below -2.5.

Hope that helps.

Audrey

Thank you Audrey for that, I will ask on 19 June what mine is and how it is measured.

Hope you are having a good day?

Mel x

Hello again,

Thank you all for your feedback, it was informative and interesting. I will most deffinately remind the Endocrinologist i see, that i have not had a bone density test yet! I was going through my medical letters, blood tests and there was a handwritten note by the Consultant at my first consultation listing the the tests they were going to do, the dexa scan was on there! (I think he's forgot)  

I really hope this awful condition has not affected my bone density, the Symptoms of Parathyroid disease are bad enough on their own, still its reassuring to know when the Parathyroid tumour is removed, bone density improves according to Dr Norman

Once the parathyroid tumor is removed, virtually 100% of patients will have a significant (and often dramatic) increase in bone density. Osteoporosis associated with hyperparathyroidism is the ONLY type of osteoporosis that is completely reversible!"

Well still waiting for PVS results 6 weeks this Thursday! I feel like pulling my hair out in frustration, but no need its falling out by itself  

Take care everyone.
Mealinacup

Hi,
 I haven't had a bone scan, just neck scan and lots of bloods. I did ask for one, but they didn't want to know. I will ask my GP.

I would follow up with your endo, out of interest what has your calcium / pth levels been ?

best wishes

Lozza 

Hi Lozza,
My calcium/pth levels were as follows
26/7/2013
PTH 15.5 Corrected calcium 2.74
 
9/10/2013
Corrected calcium 3.11 (PTH not known)

19/02/2014
serum calcium 2.98 mmol/L, corrected serum calcium level 2.95 mmol/L (PTH not know).
I assume my PTH levels were high as my GP said they were in the high range, but he never actually told me how high?
I will deffinately push on the dexa scan, its good to know how healthy your bones are.

All the best

Diana

Those are very high numbers Diana!  Keep pushing for answers ...! Oh and I would ask for a print out of all your results so you can match up your Ca and PTH values to give you a proper overview.  Apologies if you've already said this, got a very foggy brain at the mo......   

Jasmine x

Hi,
 Thanks for calcium/ pt levels, push for the dexa scan, your calcium levels are higher than mine, but are PTH is nearly the same, just shows how different our bodies are. do you get a lot of symptoms ? eg feeling sick, bone pain etc- just trying to understand the Parathyroid problem.

best wishes

Lozza

Hi Lozza,

sorry for the delay in getting back to you, been feeling particularly drained and tired this weekend, but my symptoms started off i think in 2011, i started to become aware of palpatations and i was put on a heart monitor for 24 hours and the result was normal.
 
I kept having palpatations and thought it might be stress related so i more or less ignored it, but then i started to get chest pains and breathlessness on exercertion so back to the doctors i went, i was referred to my local hospital who did a ECG while on a tread mill, this turned out to be positive, so i was referred to a hospital in London for a heart angiogram which was negative,   i was told my heart was fine and that the original treadmill test was a false positive!


The symptoms continued, then i noticed i was tired all the time, taking naps in the day and my hair started falling out, concentration level poor, muscle aches, thirsty, bone aches, headaches, weight increase, hot flashes. disturbed sleep, feeling sick. 
So back i went to the Doctors and pratically had a sit in at her office, refused to budge, i was so desperate and wanted her to believe me that something was not right, so just i think to get rid of me she did a full blood test and it came back showing high PTH, high calcium, low vitamin D and thats how this horrible Parathyroid journey began.

I think people with Parathyroid Disease more or less have the same symptoms, but different ranges for their PTH and Calcium levels.
 I hope this was helpful, take care.

Diana

Hi Diana,

Thanks for info, i have been feeling very tired more recent, had a good nap this afternoon. I think most of us are having the same symptoms, makes you wonder why it takes so long to tell us what we have.

all the best

Lozza