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Hi all,ive been having many symptoms and havnt got to the bottom of what could be whats acutally wrong with me, ive had my hemocromotois checked low chance of it being that then gp suggested parathormone testing as a last resort, my levels came back as 11.6 and have now spoken again and aparently its only slighty raised and not a concern? The next suggestion is Vit D deficiency check to see if its possibly this?? Am i right to go along with the only slightly raised or ask for a second opinion?? To be honest im utterly fed up of feeling so unwell. xx

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28 Replies

  • Posted

    What are your symptoms Jenny?
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    • Posted

      hi shelagh, i feel like my list is endless,

      lack of energy

      brain fog forgefullness

      needing to nap

      not sleeping well

      hair falling out

      very low sex drive

      anxiety/ rapid heartbeat

      iritability ( my partner and i have noticed this significantlly

      acid reflux constant heartburn

      pain in bones like a dull ache

      sorry to go on xx

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  • Posted

    Hi Jenny  -  are the 11.6 levels you mention, calcium levels? 
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    • Posted

      Jenny I can describe my own situation to you if it will be of any use.  About three years ago, after routine blood tests, it was shown that my calcium level was raised.  After further testing  -  including a 24 hour urine sample test  -  I was diagnosed as having Primary Hyperparathyroidism.  My GP at the time referred my case to the endocrinology department at the local hospital but was told that as the calcium level was only slightly raised there was no need to see me and she should monitor my situation on a regular basis.  This she did via blood tests and bone density scan. At that time I was living in East Anglia but last year i moved house and came to live on the South Coast.  When my new GP received my notes she immediately did further blood tests and referred me straightaway to an endocrinologist, who I have now seen twice, and who sent me for another bone density scan despite the fact that I had had one done immediately before I moved.  Previously I had only had my lower back and hip scanned but the endocrinologist said that to determine the the measurement in relation to the hyperparathyroidism I needed to also have my forearm scanned.  This was duly done and when I saw him again he said surgery would be necessary and in the meantime he would send me for both a Sestamibi scan and an ultrasound scan to determine the exact location of the malfunctioning parathyroid in readiness  for the operation. At the same time he also put me on a course of vitamin D tablets. I pass on all this information because I am experiencing many of the symptoms you list.  I send best wishes and hope you soon find satisfaction in your own case.
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    • Posted

      Thank you so much karole its so hard to explain my frustration and all i feel like i do i moan that i dont feel right. when my gp phoned the other day and said my parathomone is only slightly raised i cried as im sure this is whats causing my extensive list of ailments. do you think ill get more answers from my vit d levels being checked or am i clutching at straws??? xx

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    • Posted

      I do sympathise with you Jenny  -  I really sense your frustration.  I am not a medic but would think it might be worth getting your vitamin D level checked.  Has your GP mentioned hyperparathyroidism to you?  As i said, this is what I have been diagnosed with and I can identify with very many of your symptoms.
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    • Posted

      she mentioned "moans Groans some saying like that??? and the possibility of hyperparathroidism but as my parathormone is only a bit high the vid d also needs doing,im not even sure on ranges?? xx
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    • Posted

      As I mentioned in my earlier more lengthy reply,  when I was first diagnosed with hyperparathyroidism the endocrinology dept told my GP to just monitor me, as my level was only slightly raised.  However, as I also said, when I transferred to a different part of the country I was treated quite differently.  Maybe you ask your GP to refer you to an endocrinologist?
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  • Posted

    Jenny, you may have hyperparathyroidism.  Your GP won't agree but you need to have your ionised calcium level checked (this is the active form of calcium in the blood).  If this is outside the reference range then you almost certainly have hyperparathyroidism.  Unfortunately you can't get this check done on the NHS.  You have to go to a private clinic which will charge you (£130 when I've had it done for my wife).  They will give you a report which shows whether you are in or out of the range.  I read recently on the facebook page  'hyperparathyroidaction4change' that in Denmark they only carry out ionised blood tests.  The serum adjusted calcium levels that are performed by the NHS can be very innacurate.  Research reports from Canada and Ausralia confirm this.  Keep perservering.

    Alan

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    • Posted

      Hi Alan, I'm intersted in your reply to Jenny.  I was diagnosed with hyperparathyroidism  some time ago  -  discovered when a raised calcium level was found after routine blood tests. This was done on the NHS but I didn't realise there were different ways of testing such as mentioned in your reply to Jenny.  I am now at a stage where I have seen an endocrinologist and have just had a Sestamibi scan and awaiting an ultrasound scan next week.  All this with a view to surgery in the near future.  Could you tell me more about the ionised calcium level and the serum adjusted calcium  -  which is presumably what I had done as it was on the NHS?
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    • Posted

      Thank you Alan i dont mind paying as i suggested to my GP ill go private anyway as i really feel down and want to get to the bottom of this. shes testing my vit d levels this week/ next will this resolve anything or show more answers?? Thank you for your reply Jen x
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    • Posted

      Hi Jenny.  If you have PTH your Vit D will show a low score.  Your GP will then put you on a 3 month dose of daily Vit D3 pills.  This will push your calcium levels up and make you feel more ill.  There's nothing you can do about this because the system says you must do it before you can have an operation. It happened with my wife on 3 separate occassions.  If your GP doesn't do this it's because she'll have recommended that you see an endocrinologist.  The endocrinologist will probably mention some rubish like secondary hyperparathyroidism and put you on the Vit D routine.  There's nothing you can do about it.  You are dealing with Gods and they can't be questioned.  Eventually you'll get an operation and hopefully be cured.  Sorry to be so downbeat but this is the way of the NHS.  My wife's been through this.  Persevere though and you will get cured.

      Best wishes.  Alan.

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    • Posted

      Thank you Alan i feel bad questioning my GP never mind above but i know my body and thats why im not giving up. When you say will feel worse is it the same symtoms just more exagerated? x
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    • Posted

      Hello Alan  -  many thanks for all your helpful advice.  Have now watched Dr Norman performing the parathyroid op and was very impressed  -  rather wish I could get over there to see him.  Where did your wife have her operation done?   Re Vit D in your reply to Jenny  -  I was put Cholecalciferol 2000IU tablets about a month ago by the endocrinologist and have been taking them daily since  -  until today.  I had queried being put on Vit D knowing I already had a raised calcium level and also after reading the information leaflet which stated you definitely shouldn't take them if you had been told you had a raised calcium level. But I was told I should still go ahead.  Then after reading all the info on this site and knowing my symptoms had been much worse since taking the tablets I decided enough was enough and so I missed taking one today.  However, you say it is necessary to raise the calcium level further prior to surgery  -  can you tell me why this is?

      Karole

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    • Posted

      Hi Karole - my wife had her first operation at the Royal Marsden in London. Only one parathyroid gland was taken out because only one showed up on the sestamibi scan.  Nearly four years later and after repeated denials by Doctors and another scan which showed up negative we eventually arranged another operation.  This was done by Mr Palazzo at Hammersmith hospital.  He took out two bad glands and I am unsure whether the remaining gland is bad.  Her recent serum adjusted calcium level is slap bang in the middle of its reference range which would indicate that the operation has been successful.  I paid for this to be done (cost £30). However, her PTH level was high after the operation so I am going to pay for her ionised calcium level to be checked (£130).  Mr Palazzo is probably one of the top surgeons in Europe when it comes to HPT surgery.  It is now almost three months since her last operation and so her next blood tests will be done by the NHS and reviewed by Mr Palazzo.  NHS tests never include an ionised blood test.  As to why they need to raise the calcium level prior to surgery?  It's a mystery.  It could be down to several things:

      a. They want to delay an operation for as long as possible because they are short on resources.  I read somewhere that in Holland the op waiting list is 18 months so they put patients on Cinacalcet to aleviate the HPT symptoms.

      b. They only use the calcium serum adjusted level for testing whether a patient has HPT and therefore need to get it up to an out-of-range level before confirmation is accepted.

      c.  They blindly follow guidelines set out by the NHS.

      d.  If you want an operation you have to follow what they have told you to do no matter how stupid.  

      I have tried to get changes made at the highest level within the NHS without success.  Sallie Powell runs a facebook site in which she has been trying to get changes made re this disease for the last four years. It is a very supportive web site and you should use it.  It's called Hyperparathyroidism UK Action4Change, I think.

      I hope things progress well.  In the main they do and it's unlikely that you'll be one of the unlucky 25% where doctors don't get it right.

      Best wishes .  Alan.

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    • Posted

      Hello again Alan  -  just to say how much I appreciate your helpful information.   Since our last contact I have had the ultra sound scan and more blood samples taken.  When I went for the U.S. scan the radiologist told me before he started that it usually did not show up anything so I mentioned that I had had the sestamibi scan. When i was leaving he said the results of the sestamibi scan were there and they didn't show up anything.  So now I am thinking I ought to have my ionised calcium level checked  -  is this a blood test?  I know you say this has to be done privately but can I arrange it through my GP?  I actually have an appointment with her in the morning and realise I have left it a bit late to ask you for a response but if it were at all possible I would appreciate it.

      I also wonder what will happen next within the NHS system now nothing seems to have shown up.  The endocrinologost I saw was definite about my needing surgery and booked and appointment for me to see the surgeon towards the end of June.  However, I understand this man is a breast surgeon so would like to opt for the 'choose and book' system.  Mr Palazzo sounds very good but wonder if you know of Mr Greg Sadler at the Radcliffe in Oxford  -  from what I have read he sounds to be someone specialised in the parathyroid area.  I mention him because Oxford would be a much easier place for me to go to as I have family there. 

      I have looked at Sallie Powell's website  -  I am glad you mentioned it as I was thinking something ought to be done about raising the awareness of this condition.  Have also looked at Wiki on the ionised calcium mtetabolism you mentioned  -  thank you for all these things  -  it does help to discuss with someone who has been/is going through a similar experience.  Best wishes, Karole

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    • Posted

      Hi Karole.  If your endocrinologist says you have hyperparathyroidism then you don't need any more blood tests to prove it.  I only know of two parathyroid surgeons both in London.  I have read of very good reports of a surgeon in Oxford but I don't know his name.  Someone on Sallie Powell's website will know.  Get signed in - it's very easy to do and you'll have a very quick response.  I don't have the internet at home so I only get to post when I'm round at my daughter's.  Hope the interview with your GP went well and sorry I couldn't get back sooner.  You'll win through.  Best wishes.  Alan.
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    • Posted

      Hello again Alan  -  it is a few weeks since I was last in touch and I thank you for your last email.  When I saw my GP at that time she told me the results of the blood test showed my calcium level to be in the 'normal' range  -  I hadn't realised they could fluctuate.  However it was no good trying to discuss the situation further  as she told me I seemed to know more about the condition than she did!  And as I had an appt. booked to see the surgeon I should discuss things with him.  When i saw the surgeon I expected he would want to discuss surgery as this is what the endocrinologist had told me.  However the results of the ultra sound and sestamibi scans had not revealed anything.  So he said there were 2 options: a) he could do exploratory surgery but preferred not to as possible damage to vocal chords etc might result.  b) to wait for 6 to 9 months then have further scans as the tumour would probably have grown and would show up.

      But in the last week or so I seem to have developed further symptoms and realise the condition is worsening.  So was interested to read a post on this forum from a lady who had been to Dr Norman's clinic in Florida and been cured of her hyperparathyroidism. Eventually she gave me her phone number and we had a long talk about Dr Norman's surgical procedure.  I now feel he is the only person I could trust to do this operation properly but of course it involves a trip to Florida and a lot of money.  I know you have mentioned Dr Norman on past postings and wonder what your thoughts are on such a choice?  I look forward to hearing from you.

      Kind regards, Karole

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    • Posted

      Hi Alan I like the way you analyse the problem and you look on the other europeen countries to understand the policy on parathyroid desorders. I am afraid you are right and the four points are true together. I don't know exactly the french policy of Securité Sociale  about parathyroids as I had a big adenoma with very high calcium so the operation was urgent and there was no discussion about it. I will try to find out . You should help Sallie Powell in her fight to change,perhaps you already do it, everybody can't go to Florida to be cured. I hope you wife will go better and will not need any more operation.

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    • Posted

      We were booked up to go to Florida last year but at the very, very last minute my wife got cold feet and said she couldn't go as the trip was too daunting.  To my deep embarrasment I had to cancel the trip.  Because of the expense (I had budgeted £15,000 for flights, hotels and incidental expenses) we had been prepared to downsize so you can see the confidence I had in going to Dr Norman's clinic.  He and his team of surgeons carry out 3,300 parathyroidectomies a year and have two surgeons present for each operation.  Having said that I can only speak highly of the surgery my wife had with Mr Fausto Palazzo in Hammersmith hospital.  I have also heard of excellent reports of the two surgeons in Oxford who carry out parathyroidectomies.  Good luck in whatever decision you take but rest assured you will be a different person once you have had the naughty blighter(s) out.

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    • Posted

      Hi Tana.  I will be very interested in what you can find out about hyperparathyroidism in France.  References to web sites are vitally important but don't worry if they're in French as I'm sure google translate and my schoolboy French will be adequate.  My own research (i'm an amateur in this field) centres on two areas: ionised calcium as being the correct calcium measurement instead of serum adjusted level and secondly the association of lithium with parathyroidism. I am in touch with Sallie and am trying to help her out as much as possible.  Kind regards.  Alan.

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    • Posted

      Oh Alan I am so sorry to hear this.  What a disappointment for both you and your wife not to be able to go through with the visit to Florida. I admit the thought of the long flight is not one I relish or even a trip to the USA  -  I lived on the west coast of America many years ago and have not felt inclined to return.  However, needs must, so I am prepared to try and overide my negative feelings and the cost involved for the sake of my health.  On your  recommendation I have now joined Sallie Powell's website and although I have learnt a lot from it I am also horrified by some of the stories I read there.  People are suffering dreadfully from this condition but in many cases not getting it dealt with.properly.  And yes I see Mr Palazzo is highly recommended as is Mr Greg Sadler in Oxford.  I had thought of contacting the latter but I now realise, because my adenoma has not shown up on any of the scans, that whoever I went to see in this country would only do exploratory surgery  -  involving a general anasthetic, a much bigger incision and far longer surgical procedure.  Do correct me if I am wrong on this please  -  I don't think anyone in the UK follows the same procedure as Dr Norman, do they?               With many thanks for all your support, suggestions and advice. Karole

       

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    • Posted

      Hi Karole.  My understanding is that none in the UK follows Dr Norman's procedures.  In Tampa you'll still get a general anasthetic but it will be one where you come to immediately.  Nothing had shown up on scans done prior to my wife's parathyroidectomy but Mr Palazzo still went ahead based on the blood test results.  He took out two parathyroids.  Best wishes and good luck with whatever you decide.  Let Sallie Powell know how you get on.  Alan.

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