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Parathyroidectomy

Posted , 3 users are following.

Fluffy43
Fluffy43

Hi is there anybody as weird and uniqe as me out there?

In July, I had a parathyroidectomy, I had a two inch cut for them to look at all four parathyroids in my neck,( as my scans were not straight forward in showing where they were)  they removed one slightly enlarged one. Then to be thorough they removed the left Thymous, found no parathyroids in here.

After op PTH went up to 25 ( I have been told 7-7.5 is normal), then one month, after op my PTH went down to 8.9 and calcium down to 2.60 ( i was told this is top of normal) Yeah thought I was curedbiggrin then two weeks ago they re-tested PTH levels and Calcium, PTH had shot up to 18.9 and calcium up to 2.75 sad

Saw consultant on Monday really nice, skilled, clever  man, he explained in rare unique cases some people can have 5 Parathyroid glands and they think I have a 5th and it  is faulty hence the high PTH and Calcium readings still!!

One problem is to locate it!

He mentioned that the next stage would be to try and locate it by taking different blood readings from specific areas in my body using catherters to try and pinpoint where the high PTH readings are coming from e.g one in the groin,2 in the chest and 2 in the neck areas, I think this is what he said.

Then once located they would know where it is ,then have another op to remove it.

Is there anybody out ther like me with this problem, or had this problem and the above procedure has worked for them?

Not sure why my healing path has to be so weirdrolleyes

 

1 like, 11 replies

11 Replies

  • bindey
    bindey Fluffy43

    Posted

    but WHY would you want your parathyroids removed fluffy? I would hang on to what you have left, if any.

     

  • Fluffy43
    Fluffy43

    Posted

    Thanks for your comments and - helpful - advice.

    I would want the surgeon to remove this 5th(?) parathyroid so as to cure me of the debilitating illness of hyperparathyroidism!!!!! Even though such means endless/more tests (inc nuclear etc.) and an even larger operation (my last one was 3-4 hours long). I have had extreme fatigue for twenty years and have not been able to live my life to the full because of this illness etc.

    Have you had hyperparathyroidisim and have you been cured of this with/without operating?

    I put this message out so as to - hopefully - hear back from people who had an operation that removed a tumorous parathyroid gland/node from the neck/throat area. For me it was a case of the following; after the surgeon had checked all four in that area ( the other three in my neck are healthy - thank goodness), in addition I have had to have my left Thymus removed. Yet, despite a massive spike in PTH and calcium, my counts slowly subsided for a few weeks but have now started to climb once more - thus I am still left with hyperparathyroidisim because there is a fith tumorous parathyroid gland in the body cavity (like looking for a needle in a haystack), that is still causing me lots of problems and they need to find it, remove it and thus, hopefully, cure me of HPTH. This would then make my calcium and PTH return to normal - therefore avoiding other illnesses and associated complications. By removing the symptoms of HPTH, this would then, possibly, hopefully, at the age of 43yrs, allow me to become healthy again and maybe enabling me think about having a family - if mother nature has not already robbed me of that as well!

    Have you been through the above and can you tell me how they cured you of a 5th - rogue - parathyroid tumour?

    • bindey
      bindey Fluffy43

      Posted

      hello fluffy 

      I am full of admiration for you. So brave too. I haven't had such an op. I'm a hypothyroid patient. I was just so worried to read about what you've been through and wondered if there was not another way?

    • elainec33
      elainec33 Fluffy43

      Posted

      I am so very sorry for yoou, it is a nightmare and nobody understand what you are going through except those of us who are.  Sallie Powell who is now a friend of mine has started a facebook group, Hyperparathyroid UK Action for Change,  to try and make people aware of this vile disease.  She has also created a petition in the hopes that our totally ignorant GP's and many endocrinologists will start taking the symptoms seriously and learn about hyperparathyroidism.  I have advanced osteoporosis most likely caused by this vile thing and after getting my blood test results from the local surgery in May "no further action" is their favourite, I noticed my blood calcium was high but the GP was either blind or too stupid and was encouraging me to chew on those awful Adcal calcium tablets (3000mg per day) which would have probably ended up killing me.  So I decided then to go down the private route which has also been an "experience" with lost tests, pth samples put in the wrong bottle etc. and finally last week an ultrasound and more bloodtests, so far coming to a grand total of £2000 and no further forward except losing weight by the day and can barely face eating.  Anyway, please read this newspaper article written by Sallie and join the group on FB if you can.  We are also in touch with ParaTHYROIDpeeps which is a group of U.S. girls been through the same thing and they are affiliated to the famous Parathyroid Clinic in Tampa run by Dr Norman  http://www.dailymail.co.uk/health/article-2776581/Mother-looked-nine-months-pregnant-feared-dementia-diagnoses-rare-condition-Googling-symptoms-desperation.html
    • elainec33
      elainec33 Fluffy43

      Posted

      Hi Fluffy, I just wrote a long reply to you but it is awaiting moderator approval, I didnt realise you must not post links.  I posted a link about a worman who went through absolute hell for 7 years and then eventually she diagnosed herself when she found she had high calcium in the blood.  In case mod doesnt approve just google "mother that looked nine months pregnant feared dementia" it was in the Daily Mail about her, Sallie Powell, who I have met in London along with others from the group she has started on facebook  "Hyperparathyroid UK Action for Change"  we are all there to help each other and have ties with Parathyroidpeeps who are in the U.S. who are affiliated to the Norman Clinic in Tampa. 
    • elainec33
      elainec33 bindey

      Posted

      bindey, many people confuse thyroid with parathyroid and they are nothing to do with each other, the parathyroids, normally just four of them, sit by the thyroid, hence the name.  They are only the size of a grain of rice but can get a growth on them known as an adenoma, normally benign, but this growth causes the gland to produce even more parathyroid hormone, which leaches the calcium out of the bones and puts it in the blood instead.
  • alan65290
    alan65290 Fluffy43

    Posted

    Have you looked at Dr Norman's Florida web site?  He identifies which gland(s) is bad by using a "geiger" counter. Noone else in the World does this and thus has to rely on a Mark 1 eyeball approach. 
  • Fluffy43
    Fluffy43

    Posted

    Thank you Alan,

    I will look at that now and ask my surgeon if he knows of this way of locating this 5th one. I just know that my health would not tolerate a journey to America.

    Thank you for your help. I will let you know what he says,

    In haste,

    Fluffy

    • alan65290
      alan65290 Fluffy43

      Posted

      I've looked at different ways of travelling to Florida because when we go I know that it is going to be stressful for my wife.  We will probably end up flying but one route I've been considering is by boat to New York then by train (sleeper) to Florida.  A bit expensive but should be a very relaxing and fun way of travelling.  If you are having an op in the UK then if it was me then I'd choose Mr Palazzo in Hammersmith as he seems to be very experienced in this disease and he also does interoperative PTH measurements..

      Best wishes tou you.  Alan.

    • elainec33
      elainec33 alan65290

      Posted

      I really wish your wife well.  I had considered going to Tampa too, it is around $12000 and they organise a hotel room but now I dont feel confident enough to travel on my own and worry about any post complications setting in.  Mr Palazzo does have one of the best reputations but if its on the NHS then a long waiting list.  My option because I cannot wait around for much longer is Professor Wishart who is in Cambridge, he was the one who pioneered the minimal invasive parathyroidectomy as day surgery but  he only does private work now.  I have even looked into the property equity business to raise the money.
    • elainec33
      elainec33 alan65290

      Posted

      By the way, the probe which acts like a geiger counter at the Norman Clinic is used during the surgery but a sestamibi scan is done prior, the same as in the U.K. but sometimes the latter scans come back as negative but with all the symptoms, a decent surgeon will still check each gland and measure the amount of PTH.
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