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Can anyone tell me what ths parathyroid scan entails?

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shirley68565
shirley68565

I am being referred to a surgeon to discuss a parathyroid operation. I am waiting to go for a scan. Can anyone tell me what the scan entails? I know dye is put into you. How long does the scan take? Thanks

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  • Fluffy43
    Fluffy43 shirley68565

    Posted

    Hi Shirley,

    This web site is amazing. I hope I can help you and you guys can help me?

    About the scan- not sure how many you are having. I am based in Swindon.

    I had an ultra sound done 1st- they found a shadow near the thyroid at the back indicating something might not be right within the parathyroid area -sugested a lower inferior parathroid adenoma,yet not clear. So I then went on to have the Sestimibi Scan - where they place the radioative dye in you but the machine does not give you any radiation- this came back unclear- (I do suffer from back and neck challenges -so after lyinging in one place for a long time - i saw the physio a few days later who unlocked my neck and shoulders for me) - so i then went and had an X ray where the machine gives you radiation (xray) yet the dye is non toxic - this then showed maybe a right inferior parathyroid adenoma -but still not clear.

    For the radiation dye I took two very good products to get rid of the radiation, they mop it up rather then letting it stay in the body- one is by bio care called Nutrisorb Selinium drops and the other is by Cytoplan called Spirullina Blue Green Algae tablets 500mg - you can ring both companys for advice if you need more info and I found the cheapest place to buy them is from dolphin fitness, yet they can take a long time to deliver or order them direct from the above companys. Also if you have to have the X Ray - to get this out my system I took the Homapathic Remedy X Ray ordered from goulds Homapathic in London- he will explain how to take it. Also you MUST drink lots of water afterwards as I was told after twelve hours your body will start to wee it out (radiation). Yet I felt with the above measures I should stop glowing like the ready break Kid Quicker.

    So as I went all through that I was very disapointed to find out that they had no clear results. So I was then refered to a lovely chap at Oxford Churchill Hospital ( he is the surgen/ Specialist, who explained that due to the hormones- they don't always pick up the radiation dye to show where they are- so we will now go back to relying on the blood tests for the parathroid hormone and calcium levels. Yet if I did need an op he explained that he would do a 1 inch cut and if he could see them he would take them out as apparently the ones with the growth are a thumb nail size instead of a grain of rice size if he could not see them then he would do a 2 inch cut to see all four and then remove the ones that are faulty- that's the theory.

    So back to the very begining- will try and keep this brief-- hope you haven't fallen asleep yet!!!!!!!!!!!!!!! Health challenges started in 1980- when I was 8yrs old with tonsilitus' bouts of cytitus and vertigo- doctors refused to take my tonsils out thought it was better to bombared me with 10 lots of antibiotics a year until I had my tonsils out in 1998- which then left me with chronic cystitus more antibiotcs!! and diagnosed me with Chromic Fatigue/ Fibomalgia/ ME- and Vertigo- I can work 3 Days a week ,support my symptoms with hompathic rems- yet got to Jan this year and I had completly had enough of the fatigue/brain fog/ joint pain , no quality of life etc, as my partner of 17yrs who is Ace also has ME Fibomalgia -( so at 42 I feel we r getting on to late to have a child) - a New doctor sent me for blood tests and found out that my Parathyroid horomone was at 12.8 and my calcium was 2.89 - So I have been seeing a hopathath who has been treating me with Calcium Phosphate, yet since Jan to now my parayhroid has peaked at 18.2 and the latest is 15.5 and my calcium has fallen to 2.40 and gone up to 2.85 and is now at 2.66. So I feel I have to go ahead with the operation. I also have been taking Bio Care Liquid bio D Moulsin 1000 iu two drops a day they will recomened the vit D tablets yet they have geletin in them from beef so I did not take them for those personal reasons.

    So there theroy is I could have had this prob for many years and not the chronic fatigue/Me Fibomaligia or I could have both, so at least one of the tiredness illness could go or if I'm lucky, I could be left with no tiredness!!!!!!!!!!!!!!!

    Had my pre op on fri 3rd of July and due the op on 17th of July- yet won't know for defo until I ring up on the 16th of July after 12pm.

    I then have to wash several times the day before and the morning of op in a bug killing soloution and nose killing bug cream!

    I also found out that it was called day surgery- yet is not and will have to stay in 1-2 nights-which could complecate things slightly as I have food allergies yet the nurse said my partner could bring them in.

    What i am frightend of is having a reaction to general anesthetic, I can't tolerate antibiotics- did any one have to have antibiotic drip or tablet form and the healing/infection of the scar.And the recovery rate afterwards- I have 3 weeks booked of work- then full on when I get back

    I have some form of homapathic suport for general, antibiotics and hypericum for the healing of the scar , yet depends if they let me take it in the hospital.

    I hope the scan info helps and is there any one that can answer my questions?

    Here's to happy healing healing!!!

    • shirley68565
      shirley68565 Fluffy43

      Posted

      Just a quick reply. I had my operation on 9 March this year. I had 1 faulty parathyroid. My surgeon did a small cut which was glued and can Barely be seen now. I stayed in overnight which was good because my calcium dropped a few hours after the operation. I was given calcichew and that sorted it. I am allergic to lots of antibiotics which causes problems but they found one and I presume I was given it in theatre. I had none after. The only pain I had was in my neck because you are put in all sorts of positions. I do have a bit of a neck problem. It took a few weeks to feel like normal with more energy but this seems to vary depending on the person. My levels are all back to normal except vit d which I seem to have a problem with. I'm on that for ever I think. At the moment I'm having problems with bone loss in my jaw which is effecing my teeth. The dentist showed me the X ray and he called it trauma to the bone which may have been caused by no calcium. A line can be seen when the loss started. Hope all goes well for you. I agree this site really helped me! Shirley.
    • alan65290
      alan65290 Fluffy43

      Posted

      Hi Fluffy.  If you haven't looked at Dr Norman's Tampa, Florida, web site do it now.  Most GPs, endocrinologists and surgeons in the UK do not fully understand hyperparathyroidism as I've found to our cost.  My wife needs a second operation because the first one only removed one large tumour leaving a second smaller one in place.  Sestamibi scans with ultrasound overlay do not necessarily find all tumours as they didn't after her first operation when her blood tests indicated otherwise.  Make sure your surgeon does intra-operable PTH measurements otherwise you may be in for a second bout of hyperparathyroidism.  This won't be much fun as you'll have the devil's own job persuading your endocrinologist that you should have another operation since a sestamibi scan won't show up the tumour as it will not have grown to a sufficiently large size.  I'm not a Doctor but I've studied Dr Norman's web site carefully and I only wished I'd found it 3 years ago.  I find the arrogance of our top doctors beggars belief.  Perseverence in getting the correct treatment is what you need.  My best wishes go with you.

      Alan.

    • Fluffy43
      Fluffy43 alan65290

      Posted

      Hi Alan,

      Thank you so much for your kind message. I'm so sorry to hear the troubles your wife has had. What process is she at at the moment?

      That's my conceren that the scan hasn't showed where they are yet, Dr Mihai explained that sometimes the hormones don't take the dye up to show where they are, he is supossed to be a specialist in treating people with negative scans.

      Thank you so much for the web site details I am now going to look at that and also to ask about and make them check for the inta-operable PTH measurements. I hope they find something when they do the operation.

      I totaly agree with you about the arrogrance of Doctors, after being ill since i was eight years old- my parents and me in later years begging for a cure ( in 2000 I found out about homopathy ) which has given me a basic quality of life. Yet i find that most DR's only have a small toolbox and if they can't fix you with that then it is all in your mind or they wash their hands of you.

      So in Jan I met a new DR who has been amazing and found this out and I hope DR Mihai can prove that he is a good surgen and can cure this. I am not getting to excited yet it would be wonderfull to wake up one day and be well!!!!!!!!!!!

      I'm of to read the site you have recomened, please let my know how your wife is doing on her path to good health.

      Nicola

  • Fluffy43
    Fluffy43 shirley68565

    Posted

    Hi Shirley,

    Thank you so much for your reply. Glad to hear your op went well and they found an antibiotic that agreed with you.

    Sorry to hear that you have now problembs with your jaw, how did you find that out? I hope you are in not to much pain. I hope someone can help you.

    Nicola

     

    • alan65290
      alan65290 Fluffy43

      Posted

      Dear Nicola, my wife has been put on Cinacalcet tablets which treat the symptoms but not the disease.  I am going to get a report on her kidneys and her bone density (either through the NHS or privately) since if these are bad then she definitely needs an operation.  I've not tried to persuade her about going to Florida for an operation but have created a pros and cons chart to help her make up her mind about where she should have an operation.  Unfortunately she finds the thought of going to Forida for an op too daunting and would prefer Hammersmith as that seems to be the best place in the UK.  I might try to persuade her that Florida is the best place to go after I read that one Patient poster had an operation at Hammersmith during which half her thyroid was taken out to get at a parathyroid gland - I'm amazed that that was necessary.  The trouble with hyperparathyroidism is that it messes with the mind.  Try and find someone who is clever enough to understand the contents of Dr Norman's website and the problems you are going through.  Don't try and solve the problems you are having by yourself.  I am not a doctor.

      Best wishes to you and may your decision be the best one. 

      Alan

  • reanna72791
    reanna72791 shirley68565

    Posted

    Hi

    My names Reanna. Ive have just left the hospital after having my radioactive scans on my parathyroid. Please could some tell me the rough time scales of when my operation would be please?

    Thank you

    Reanna

    13.10.2015

    • alan65290
      alan65290 reanna72791

      Posted

      Hi Reanna

      If You are having it done under the NHS then it can be a bit of a lottery.  Someone in South Wales had their's cancelled.  The main problem is finding a good surgeon.  Make sure he does intra-operable PTH measurements.  In that way you'll know whether he has taken out all the bad glands.  Scans won't necessarily show up the bad ones as we found out in my wife's case.  If you want to know about this disease then I urge you to look at Dr Norman's web site that he runs out of Tampa Florida.

      Best Wishes. Alan.

  • rach89240
    rach89240 shirley68565

    Posted

    Hello,

    I am so glad to have found people with the same condition. I am in Oxford and my Endocrino did not say that I have primary parathyroidism.  I have been suffering from all sorts of health issues (including severe fatigue, sleepless nights, aches and pains in my whole) for a while. I went over 100 times to the doctors about the fatigue but in vain.  I have a hyperprolactinemia for over 20 years and I have been on the same treatment for over 10 years and suddenly all went wrong, my prolactin level went very. I was referred back to the endocrinology department for urgent appointment as my scheduled appointment was about 6 months away.  Every time I see a different Endocrinologist but this time, the Endocrinologist was more thorough and asked many questions including fatigue, constipation, aches and pain. So he ordered the PTH and vitamin D tests knowing that 2 previous blood tests done by my GP over 4 months indicated hypercalcimia.  

    I had a CT scan and ultra sound that were not conclusives. I so the same Endocrinologist about 2 weeks ago and he ordered many other tests such as 24 hours urine (x2) and blood tests after a steroid taken at 21:00. Last Monday, I had DXA scan and still waiting and reading about the parathyroidism. I am so unsettled because if PTH over 20 mmol/l and calcium slightly elevated.  I am not sure what I have at the moment, but I show all the symptoms.

    Rach.

    • alan65290
      alan65290 rach89240

      Posted

      Hi Rachel

      This disease and its treatment is probably not fully understood by any doctor in the UK judging by the postings on this site and my own experience of my wife's treatment.  The only place that I know that fully understands hyperparathyroidism is Dr Norman's clinic in Tampa Florida.  

      Enough of my bleating, here are a few pointers that may help you on the way.

      Because serum calcium is very closely allied to ionised calcium measurements, doctors only take the cheaper option of measuring serum calcium.  Unfortunately ionised calcium measurements can sometimes show a higher reading (this may be true only of people with hyperparathyroidism - worth someone researching, I guess) and this together with the PTH level is indicative of whether you have hyperparathyroidism.  You can pay a private clinic to measure your ionised calcium level (it costs about £190).

      Sestamibi scans do not necessarily identify bad glands but UK doctors still insist on relying on the scan results.

      Even when surgeons inspect all four glands during an operation they can't always find all bad glands.

      It is very important to understand what Dr Norman and his colleagues use sestamibi injections for.  They give an injection of the radioactive material about an hour before an operation and take a scan.  This tells them whether there are any maverick glands - behind the sternum or jawbone, for example.

      While the material is in the body they carry out the operation and during the procedure they check each gland using a 'Geiger counter'.  This tells them exactly which gland(s) is bad and has to be removed.

      They do something like 3,000 parathyroidectomies a year.  UK endocrinologists probably only see about 20 patients with hyperparathyroidism per year - they can't know as much as Dr Norman.  Because of the number of operations and methodology used by Dr Norman they operate as a sort of day clinic where you go in in the morning and go home in the afternoon.  Operations take 20 minutes on average.

      In the UK they carry out intra-operable PTH measurements using blood samples taken from the arm (usually).  These don't tell them which glands are bad, only that if one bad gland has been taken out there may be another one, two or three bad ones remaining.

      There's lots more on his web site and guess what - having sung his praises my wife says she doesn't want to go to Tampa for an operation.  The thought is too daunting.  What's the saying?  "You can lead a horse to water, but...."

      ​My thoughts are with everybody who has this horrible disease.

      Alan

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