Hyperparathyroidusm

[Fatpidgeon]

Just wondered if there is anyone else that got diagnosed with Hyperparathyroidism after being diagnosed with Osteoporosis ?

[t1gernidster]

I did by a very site Gp who noticed the calcium in my blood. I will be for ever indebted to her. She referred me and the offending gland was subsequently surgically removed. I don’t like to think what I would have been like now if that hadn’t happened.

[Fran57]

Hello. Yes, I did my own research and told my GP about the link.

My surgeon said it would have been pointless taking any medication for osteoporosis whilst I had hyperparathyroidism.

I have chosen, so far, to not take any osteoporosis medication 🤞🏻🙏

Good luck,

Fran 😉

[Verauk in reply to Fran57]

How old are you  Fran57 and bad it is your Osteoporosis? I mean can you say your Dexa Scores ( hip and spine)?

Thanks

[Fran57 in reply to Verauk]

Hello….it’s a shock to me every time I say it, but I’m 67 🤦🏽‍♀️

On a day to day basis, I have no symptoms of osteoporosis… but I suppose that’s the same for many people.

My DEXA scan scores in 2017 (when I fell and fractured my pelvis 😳)were as follows:

Total T scores (which I believe are comparing you to a 30 year old …if only!!)

Spine -3.5

Hip -2.4

Fem. neck -2.7

10 year risk of major fracture was 16%

I went on to have a REMS scan in 2023:

Spine -3.00

Hip total-2.1

Fem. neck -2.7

I have the Z scores, but I won’t bore you with too much, unless you’d like to know.

Fran 😉

[Verauk in reply to Fran57]

It's more than sufficient. I'm 68 but I dont feel this age... my scores are very close to yours on spine( -3.2) and hip(-1.9) but I dont trust this values at all.... but unfortunatly where I live, DEXA are the only test available. I took Risendronate for 8months and February was the last one. No more. Except some years ahead.

[Fran57 in reply to Verauk]

😊

[Cappuccinobaby]

Yes I was

[bluebird567]

I'm sorry for the long post. I was diagnosed with Osteoporosis in my early forties due to early menopause. I was given various medications however couldn't get on with Alendronic Acid. I am no doctor however I believe that there is a strong correlation between a diagnosis of Osteoporosis and Hyperparathyroidism.

In 2013 I had one of my kidneys removed following 18 months of pain. At times the pain took my breath away and I kept getting urinary infections. The kidney was only functioning at 7% and the 'technical' term used by my consultant for my bad kidney was 'manky'. My other kidney isn't perfect but manages to keep me going. 🙏

Fast forward to 2019 - I was extremely tired, similar to when I had the kidney problems, so had blood tests then a more detailed blood test for parathyroid hormones. My results even shocked my GP. and this was the first time I heard the word 'parathyroid'. My doctor told me the relationship between our parathyroids and calcium levels. In layman's terms, the parathyroids move calcium in and out of our bones. I had a parathyroidectomy (2 removed) in December 2020 in the middle of COVID.

I wish I had ask more questions at each consultation at the time.

My thoughts are that my 'faulty' parathyroids 'may' have contributed to my Osteoporosis diagnosis all those years ago, and even my kidney issue. Few doctors look for the parathyroid hormone.

I don't worry about my Osteoporosis, too many other things going on, but like to think I eat healthily and exercise (not as much as I should tho').

Thanks for reading my long post.

[Graceissufficient in reply to bluebird567]

Undoubtedly the hyperparathyroidism was the main cause of yr OPorosis.

[Graceissufficient in reply to Graceissufficient]

And what your story shows is the need for Everyone with an OPorosis diagnosis - not just those being given drugs - to have the full blood tests. Which is not happening, probably due to the expense for the NHS.

When I recover more from my concussion I will pay for private blood tests. Though my Frax score is close - 16 per cent - my gp only agreed to a D test, and I still haven't got the paperwork for that.

[Doodlereggie]

hi

So strange to read your post today,as had an appointment yesterday with endicrinologist after diagnosis of Hyperparathyroidism.However,calcium levels have returned to normal,at which she looked a bit perplexed!Having ultrasound next week and then a special scan at Royal Free.Have no symptoms at all,just blood test results last year from Rheumatologist as calcium level high then.Been taking 2000md vitamin D 3 .I have had osteoporosis in spine -3.2 for some time,but not getting any worse.I have 6 monthly denosamab injections,and was researching last night which stated a link between this drug and hyperparathyroidism.Dont know what to think really,but,as I feel fine,I just can’t worry at the moment.I have said I will have parathyroidectomy if needed as doesn’t seem too scary.Good luck.x

[bluebird567 in reply to Doodlereggie]

Hi Doodlereggie,

I was informed that you can still have normal or near normal calcium levels and have Hyperparathyroidism. I think it's known as.....' Normocalcemic Primary Hyperparathyroidism. .... Just goes to show how limited in knowledge our healthcare professionals are.

I had extreme fatigue which prompted more blood tests. If you do have Hyperparathyroidism it's best to get the little b#@ger(s) out. It's the only cure. 👍

[EOLHPC in reply to bluebird567]

Agreed:

uclahealth.org/medical-serv...

Am just beginning to have my investigated. How long did they investigate before confirming normocalcemic version? I don’t see how they can say mine is primary because my primaries are infant onset lupus, hEDS & Antibody Deficiency Disease.

So glad you’ve replied

[bluebird567 in reply to EOLHPC]

Hi EOLHPC,

That's a very interesting article - thanks for sharing it.

I was diagnosed with Primary Hyperparathyroidism not the Normocalcemic version. Sorry if I misled you. Just somewhere in my 18 month investigation before my surgery, it was mentioned by someone that calcium levels are not a defined indicator of PHT.

I hope you get answers to your investigation soon. Best wishes for the future.

[EOLHPC in reply to bluebird567]

Glad if article is useful! You’re welcome

no worries: you were clear but I misunderstood. Am just v grateful for the gold nuggets of info you’ve shared: so much about all aspects of my v early onset complex immune dysfunction & connective tissue disorder comorbidities deviates significantly from standard profile, and I know my metabolic bone unit rheumatology gang are scratching their heads over this sky high parathyroid result alongside reasonable calcium, but too low D2 & too high D3 & low GFR results….so any tips from experienced patients like you really do help me ask the gang the odd useful question as they work on this diagnostic puzzle 😉

[bluebird567 in reply to EOLHPC]

You are very welcome. Wishing you all the best with your investigations, a good resolution and improved health and wellbeing.

[Calciumgirl in reply to bluebird567]

Before my Zoledronic acid infusion last December, both my calcium and pth blood levels were well within normal ranges.Further blood tests in January showed a drop in calcium levels.Repeat blood tests done at GP request - Calcium then within normal range but on the low side but pth up from 4.5 - 11.8- Above normal.Saw my GP to discuss and although my fracture liaison nurse tells me this is normal and repeat blood tests are needed at 3 months post infusion and should settle down,is this experience normal ? My GP didn't seem to agree that there is a link and seemed keen to look into an endocrinology referral.I have pushed her for more blood tests.Go in two weeks.I don't want to be given more drugs to counteract an infusion I wasn't too keen on having.T score 3 3 in two vertebrae, 2.8 in one above and hip score 1.

[I60APOI]

Yes I was also diagnosed with primary hyperparathyroidism after fracturing my ankle and getting the osteoporosis diagnosis. Bloods showed high calcium and after many tests was given a parathyroidectomy which I was glad to get and this immediately sorted my bloods.

[Southerngirl2787]

Yes, not soon enough after OP diagnosis, but it was found...by me. Taking any medication is a waste of time and money. You must get the tumor/adenoma removed to stop the process. My spine has been destroyed, so many surgeries...nerves as well, 4 surgeries for those, my doctor would not listen, told me I was stressed from work.

[ROSModerator Partner]

Hi Fatpidgeon ,

Just wanted to drop in and wish you the warmest welcome to our community In case you haven't checked it out already, we have information about Hyperparathyroidism and bone health on our website that might feel helpful at this time: theros.org.uk/information-a...

Hope you can continue to connect with our valued members

Wishing you the best,

Lulu

ROS Moderator

[Fatpidgeon]

Thank you to everyone who replied to my post. I no longer feel alone. I am not sure if this the right way to reply to everyone.

I am 65, and had my first DEXA scan 2 years ago. It has taken two years to get a diagnosis of hyperparathyroidism. I have the normal calcium version and my Endocrinologist does not believe that the Osteoporosis is caused by Hyperparathyroidism, so is not willing to refer to Surgery as long as the calcium levels remain within the normal range. I am aware of one occasion when serum calcium was above normal range at 2.69. I have had scans done that identify bilateral adenomas and a thyroid nodule. The Endocrinologists position is not in alignment with NICE guidelines.

I have been taking Aledronic Acid for two years, but it is not possible to take it longer than 10 years. I am not sure what to do about this. I have seen a small improvement in BMD of about 5% over the two years, but I am thinking that as soon as the AA medication stops my Osteoporosis will get worse and likewise if the adenomas grow.

I am sure I would have be in a better position if my the blood tests originally done to exclude hyperparathyroidism hadn't been processed by the labs at Stoke Mandeville Hospital. This Hospital, together with other hospitals in the Oxford group use a significantly different reference range. So my GP incorrectly excluded parathyroid disease as a cause of Osteoporosis.

I noticed when I had PTH tests done at a different hospital, which used the national references ranges, and then had to ask for referral to Endocrinology for a second opinion.

It seems a never ending long struggle.

Apologies for a long post. Any suggestions on how to proceed very welcome.

Thank you once again.

[EOLHPC in reply to Fatpidgeon]

Thanks very much for every detail. Am appalled they are putting you through this ordeal & am hoping things will start going better for you thanks to these wonderful responses to your post. I’m very grateful to you cause have learned a lot.. You’re clearly very courageous & well informed, these doctors need to listen & work with you! Am with cambridge university Hosps & am wondering about their ref ranges too. Take care & good luck fatiguepigeon (great name) 💞