Good news for Primary Hyperparathryoid sufferers, and about time!

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Sallie Powell suffered for years from the debilitating symptoms of primary hyperparathyroid disease. Subsequently, in order to save others from having a similar experience to hers, she  has been tirelessly lobbying for change in the UK and leading efforts to raise awareness and get guidelines established for primary hyperparathyroid disease. Sallie, with the help of fellow advocates, has succeeded!

Hyperparathyroid UK Action4 Change is please to announce confirmation from Professor Mark Baker, Director for Centre of Clinical Practice for The National Institute of Clinical Excellence, that he has been in discussion with colleagues in NHS England about the need for guidelines and Quality Standard for Primary Hyperparathyroidism and he states that they have now initiated the process to achieve this outcome.

Moving forward their group has been invited to participate in the process as stakeholders. Sallie  informed us that she is writing to NICE today. She states, "we will endeavor to ensure the guidelines will enable doctors and endocrinologists to recognize and diagnose pHPT like never before. We have not come this far to accept flimsy guidelines."

While the group's primary focus is to advocate for guidelines the group serves several other purposes and brings together people who suffer from pHPT from all around the world. Here is the group's mission as stated on their Facebook site Hyperparathyroidsm UK Action4Change:

Primary Hyperparathyroidism is the 3rd most common endocrine disease yet there are no regulated guidelines for diagnosis and treatment in UK for people suffering symptoms and presenting with blood calcium less than 3.

GP's are generally unaware of the condition and believe it to be very rare. They are not aware of Normocalcemic Primary Hyperparathyroidism and the chances of diagnosis based on symptoms is even more rare leading to years of misery and very poor health in UK. This group intends to change recognition by GP's and hospitals and make everyone aware of Hyperparathyroidism.

Members worldwide are welcome. We all need a place to come and talk and share our experiences and advice. The outside world can be very lonely when nobody has even heard of hyperparathyroidism. We intend to change that by raising awareness.

"Dear Sallie

Thank you for your letter of 12th June regarding Primary Hyperparathyroidism.

I, on behalf of NICE, have been in discussion with colleagues in NHS England for the need for a guideline and Quality standard for Primary Hyperparathyroidism and we have initiated the process to achieve this outcome.

When the topic is referred to us, we will try to find a slot for it in our Guidelines programme and the Quality Standard will be based on the completed guideline.  I assume your association will want to register as a stakeholder for this guideline and you will then be kept informed of progress.

Best wishes

Professor Mark R Baker

Director

Centre for Clinical Practice

The National Institute for Health and Care Excellence

London SW1A  2BU"

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  • Posted

    Hello elaine

    Hallelujah!  Hats off to Sallie Powell for being so tenacious and getting the message about Primary Hyperparathyroidism through to those who need to know - and act!

    Hopefully things will change for the better now and the medical profession will be more aware of it now and hopefully understand the disease better.

    Thanks for sharing that.

    How are you by the way, has your situation changed at all?

    Kind regards.

    Rosemary

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    • Posted

      Hi Rosemary,

      Thanks for your enquiry.  I a still in a state of limbo and thoroughly fed up with this vitamin D regime which is so old hat.  Anyway, I am reckoning on going back to the surgeon in a couple of weeks or so to find out if the vitamin d has "stirred up my pth and calcium", also would like to confront him about two completely differing ultrasounds done five months apart by different doctors, one suggesting possible parathryoid adenoma and the other (the latest one) suggesting Grave's thyroiditis.

      I hope you are doing okay,

      Kind regards

      Elaine

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    • Posted

      Hi Elaine

      Poor you, I know only too well from experience just how fed up and awful you must be feeling,  Will you see the surgeon privately or on the NHS (not that it makes much difference except that one is much quicker)!  Your surgeon is clearly stuck in the dark ages and waiting for the higher level of Vitamin D to push down the calcium - but of course it won't!  You know what you ought to do? (if you haven't already) - take copies of Sallie's paperwork with you and give it to him/her.

      These are the symptoms of Grave's:

      Anxiety and irritability.

      A fine tremor of your hands or fingers.

      Heat sensitivity and an increase in perspiration or warm, moist skin.

      Weight loss, despite normal eating habits.

      Enlargement of your thyroid gland (goiter)

      Change in menstrual cycles.

       

      Does that fit? Hmmmmmm

      I would be interested to know how you get on when you see him/her.

      I'm doing ok thanks, now 2.5 years after my parathyroidectomy, thanks for asking, I'm nearly normal again.

      I'm with you on the ultrasounds!!  I had a gynaey one done privately as I have grown 2 ovarian cysts now (at my age)! and the NHS doc would not take any notice of the private one (the lady also does scans for the NHS)! and he insisted I have an NHS one done which I did 5 weeks later! (done by a different lady).  Not only was the wording completely different, she saw a "fibroid" on it which the gynaey (also trained in ultrasound) insisted wasn't there !!  All this doesn't inspire one with confidence does it.

      Furthermore, my nextdoor neighbour about a week ago had a scan of her back and was told she had a collapsed vertebra and to think about having surgery.  It has now come to light that the person who diagnosed it got it wrong and she actually has sciatica! (quite a different kettle of fish not requiring surgery).  It is quite worrying really isn't it.

      Anyway, keep your pecker up and let us know how you get on.

      Kind regards.

      Rosemary

       

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    • Posted

      Hi Rosemary,

      at the present time, I dont really have any symptoms except great pain in bones and joints but I do have advanced osteoporosis.  Last August out of the blue my heart started racing and then would wake me up at 3 every morning, then the nausea set in, was so bad for 13 weeks.  I could barely eat anything and lost 1.5 stone.  In the September the wonderful GP reminded me "youve seen three different doctors this month".  I am not a malingerer nor go to the surgery hardly at all in 26 years.  I think they were a bit miffed that I was seeing a private endo because another gp in the surgery was trying to get me to chew on 3000mg of calcium carbonate (apart from it being the worst kind of calcium) she hadnt noticed that my calcium was over the range so I went private and that turned out to be a disaster as the woman and her secretarial service were not good (putting in mildly).  Eventually I overdid the xanax as I couldnt sleep and was like a zombie after 13 weeks.  So the next thing was to blame it on depression and anxiety.  I was certainly anxious at feeling so ill but not depressed.  So I was put on mertazapine, which has helped in respect of regaining the weight but all on the stomach now and they insisted I increase to 30mg but that made me feel ill and really irritable so I weaned myself off and now down to 7.5mg.  I still dont know what started this nausea and racing heart.  Someone suggest I had a thyroxin spike.  Who knows.

      Funny you should say about ovarian cysts.  The doctor who didnt understnd about high calcium, I have to say was very nice when I went last May about needing to spend a lot of pennies, sent me for an ultrasound, which then resulted in a hysterescopy which wasnt much fun!!  So thought oh well at least that is over and then out of the blue got an appointment for an mri, my worst nightmare being so claustrophobic.  However, I popped a couple of benzos, put my dark eye mask on and was fine.  Results a small mass which required day surgery to remove ovary.  I explained to the secretary so much going on with my dad and my daughter etc. and surgeon phoned, very nice and I said it was strange that 19 years prior at the hospital I was found to have a fibroid on the outside of the womb on the left side the size of a walnut and this mass as you call it is the exact same size and position.  He was very nice said you have a lot going on, how about we do another mri in three months.  I had this done and heard no more.  Then in December when I was speaking to a gastroenterologist about the nausea etc. he said I have been through your notes and he mentioned in passing about the fibroid.  I said what fibroid??????   Never heard anything about it since.

      So no I have very little faith in any of them.  My friend's son recently who has a serious heart condition and is unable to work any more was complaining about how ill he felt for quite some while and couldnt breath properly etc. etc.  went to his gp and he suggested counselling!!!!  He went a few days later and saw a different gp who arranged an ambulance immediately, he is now in hospital and after one week they have drained off 10 kilos of fluid!!!!   He is too poorly at the moment to be considered for another open heart surgery.

      Better press on,

      Elaine x

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    • Posted

      Hi Elaine - many thanks for telling me your story and what a story.  You have had a very bumpy ride like me with being told one thing and then something else.  I would just like to share some info etc about what you have said, it might be a bit long, but may help.

      1.  Osteoporosis - High calcium/PHPT always leads to osteopenia/osteoporosis if the tumour isn't removed.  People as a rule don't get bone pain with ostsoporosis, ususally they don't find out until they break a bone (like a secretary in the GP surgery where I worked. She was perfectly fit, went on holiday, fell, broke her hip and found out she had osteoporosis).   I had severe bone pain in my shins and forearms that kept me awake - I got to the stage of osteopenia and my adenoma was removed just before it got as far as osteoporosis.    I also used to get nausea and sickness before being diagnosed.

      2. Palpitations - Like you I also had palpitations prior to my op and was fobbed off by at least 2 GPs.  This was when I was on steroids for the PMR that wasn't!  One GP told me all my symptoms were due to the steroids!!  Then when I saw her again feeling very low, she promptly gave me information on seeing a counsellor !! What??  Then, she barked up another wrong tree and asked me if I was depressed because I never had any children!!  What??? I now go to a different GP who is very patient-friendly.

      3. Fast heart rate and palpitations - you could have Hypokalaemia (a low potassium level) - this would make sense as you said you are spending more pennies, potassium is lost in urine

      After being fobbed off at the doctors re my palpitations etc, some time later Iwent into a hypertensive crisis.  I suddenly had very high blood pressure (180/112) and a fast heart rate of 117.  It was really scary and I felt awful.  It also happened in the very early hours of the morning.  I went to my GP who immediately sent me to A&E with a letter.  Long story short, my potassium level had dropped (potassium is also fairly tightly regulated in the body and too much or too little can have severe consequences).  I saw a cardiologist who, after doing an ECG, ultrasound and a 2-day heart monitor, said I now have Grade 1 Diastolic Dysfuction and one side of my heart is a bit stiff with slow relaxation and I also have regurgitation (minor) and also a small leak in another part (thank you PHPT and steroids)!  But because my systolic function is ok, the Cardio said I wouldn't need to take any pills at this stage (thank goodness - they gave me some in A&E and I felt awful and zombie-like and wobbly on my feet).  He said I would likely be ok for about 10-15 years but if I get any symptoms to go back.  I can feel my heart stopping fleetingly (the slow relaxation/pumping out) sometimes but I'm ok apart from that and my BP fluctuates.  Tellingly, I have no family of history of heart disease!  PHPT/high calcium can lead to heart problems, but if diagnosed early you can avoid some of the potential damage.

      I was told I must eat a banana a day as it contains potassium which is very important for the heart and I have to have my potassium tested periodically now.

      4.  Regarding depression - The clue with true depression is that if you don't have a past history of it, you don't just suddenly develop it.  Yes people have highs and lows in life (normal)  but true depression doesn't just happen.  Dr Norman on his educational website has an article written by a Psychiatrist who states that when doctors refer patients to her with depression, she always runs a series of blood tests first and checks their calcium level!! because she knows that the depression-like symptoms could be being caused by PHPT because the high calcuim affects the central nervous system which includes the brain.

      Like you I also had a hysteroscopy, mine was due to PM bleeding, yes, most unpleasant!  Re your pelvic mass - did they say what exactly it was, whether it was a cyst or a benign growth?

      My left cyst was found while I was on the steroids.  I was investigated for high liver results (another symptom of PHPT) and my ovarian cyst was found incidentally during an abdominal scan for that.  A little while later, on repeat scanning, a 2nd cyst was also found, this time on the right.  The left has finally been suggested to be follicular, the one on the right a dermoid cyst (terratoma) which is now semi-solid altho didn't start off that way.  These cysts are more likely to be malignant if you are postmenopausal so I now have to have all this monitored as well yaboosucks!

      I was so sorry to hear about your friend's son, that's awful, poor chap - did they make a complaint?  A good friend of mine (who has now died), had a lung procedure for which they insert fluid to carry it out.  Unfortunately, the Registrar FORGOT to remove the fluid, and my friend felt like she was drowning, couldn't breathe properly..  She had to sit upright in bed and couldn't lie down or sleep and they gave her meds to reduce it and she really suffered.

      I loathe taking medications.  I do take the occasional Paracetamol or Ibuprofen but in the medical world Paracetamol is known as the liver destroyer and Ibuprofen the kidney destroyer so I reduce these to an absollute minimum.

      Let me know how you get on at your next appt.  I hope it goes the way you want it to.

      Rosemary x

       

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