"Wait and See"?

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I see an endocrinologist who ordered and caught the high PTH values right away, and ordered an ultrasound that revealed a growth on one of my parathyroid glands. That was in 2010. He has been monitoring my blood levels - PTH still high but calcium in the high normal range - and has me taking Vitamin D (my initial number was 7; Vit D is now normal). His over-arching approach has been "let's try this" and "we should just wait and see."

Since then I have had a kidney stone, fatigue, depression, anxiety, GERD, and most of the other symptoms listed for hyperparathyroidism. I also have Crohn's with the associated arthritis, migraine essential (no headachebut symptoms like MS), Hashimoto's hypothyroidism, high blood pressure, and, most recently, fluctuating blood pressure, TIAs and 1a melanoma and a basal carcinoma. I take about 20 pills a day just to be able to function with frequent naps. Luckily I was able to retire several years ago with an adequate pension.

My endocrinologist has just ordered another set of lab work, along with another ultrasound & 24 hour urine. My question to all of you is how long should I wait before I jump ship and go straight to a surgeon? 

Thanks in advance for your advice!

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  • Posted

    Hi, your story is complex, I hope you will find better people to answer than me. How high is your PTH ? I have heard the parathyroid operation is a small operation but difficult and you need a good surgeon used to parathyroid to do it but it seems worthy with so many symptoms ( 2 days of operation to stop years of problems). I had no choice for the operation as my calcium was very high and PTH out of all diagramms but it has not solved all the problems. It has solved headaches and brain confusion so very useful to go on working. My surgeon was very experienced but the operation was very specific as everything (parathyroid adenoma, thyroid, and recurrent nerve) were stuck together. Good luck with your researchs.
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    • Posted

      Not quite sure what you were writing with pth.  The U.S. measuring is normal range  between15 - 65?.  I have never heard of a test coming back as what you have quoted, usually only one figure.  What about the calcium, what was it, was it the endo's idea of "okay" or could it be high end normal?   Range 2.1 mmol per litre to 2.6 mmol per litre

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    • Posted

      Thank you, Tana - your experience & the variations in placement, etc., others talk about have highlighted the need to find the right surgeon. I know when I had my hysterectomy for a recurring polyp, they found another polyp on the abdominal wall, 2 kinds of cysts & endometriosis - none of which had been diagnosed before. So I should get going on that - hard to keep at it, but the number of symptoms that correlate might lead to dropping some of my medications & maybe some doctors, too. I dropped the ball for the year my dad was in hospice - I know I've got to take care of myself.

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  • Posted

    Best to go directly to a surgeon, that is what most people do now.  The endo's are useless.  It is disgusting that you have been messed about for 6 years and whoever he/she is should be reported.  The fact you have suffered unnecessarily for all those years and had more damage done to your body is a disgrace.  If you join the private group on Facebook and say Elaine sent you, I am sure you will get good advice as to where to go depending on the area you live in.  Just look for Hyperparathyroid UK Action4Change

    ?Regards Elaine

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  • Posted

    What's your endo waiting for??  Until you break a hip or have a heart attack?  That is one of the biggest mistakes Endos make.  Although it's not cancer, it behaves like a cancer and the most damage is caused by duration of the disease not how high your calcium is.   Some people don't get high calcium levels but the adenoma needs to be removed before you can start to heal.  You should request a bone scan to see what state your bones are in now.  Your Endo has made the classic mistake of giving you Vitamin D - when you have an adenoma you cannot take Vit D (or calcium) as it just makes you more sick and increases your risk of heart attack or stroke and makes you feel worse.  The body deliberately suppresses Vitamin D in the presence of an adenoma as a protective measure.   I had most of your symptoms and the disease for at least 6 years but now I've had my adenoma removed in Tampa, I am about 85% better and still improving.

    Tana is right - you need a specialist parathyroid surgeon and the best place to go is the world famous Centre in Tampa, Florida as they have the best expertise, and the operation is done in less than 20 mins with just a local anaesthetic.  I went there and am cured.  It isn't that cheap but you can pay a lot more privately over here in the UK and it still isn't the same expert operation as they do in Tampa.  Look into it, if you can manage the finance, waiting is BAD and you won't begin to heal until the adenoma has been removed.  Wishing you all the very best.

    Rosemary

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    What is your endo waiting for??  Until you break a hip or have a heart attack?  That is one of the biggest mistakes made.  Although it's not cancer, it behaves like a cancer and the most damage is caused by duration of the disease not how high your calcium is.   Some people don't get high calcium levels but the adenoma needs to be removed before your body can start to heal.  You should request a bone scan to see what state your bones are in now.  You have erroneously been given Vitamin D - when you have an adenoma you cannot take Vit D (or calcium) as it just makes you more sick and increases your risk of a heart attack or stroke and makes you feel worse.  The body deliberately suppresses Vitamin D in the presence of an adenoma as a protective measure.   

    Tana is right - you need a specialist parathyroid surgeon and the best place to go is the world famous Centre in Tampa, Florida as they have the best expertise, and the operation is done in less than 20 mins with just a local anaesthetic.  I went there and am now cured.  It isn't that cheap but you can pay a lot more privately over here in the UK and it still isn't the same expert operation as they do in Tampa.  Look into it, if you can manage the finance.  Waiting is BAD, counterproductive and you won't begin to heal until the adenoma has been removed.  Wishing you all the very best.

    Rosemary

     

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    • Posted

      ..........sorry about the dupication, I somehow lost some of my text and then had to redo it and somehow ended up with 2 copies.
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  • Posted

    You have experienced surgeons out of Tampa too, in France for example, for UK I don' t know, it should. I don' know if it is expensive for UK people to be operated in France, for french people it is free (Securité Sociale takes nearly every cost of the operation in charge)

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    • Posted

      It should be done on the NHS in the U.K. but there are huge waiting lists but it depends on the urgency and whereabouts in the country you live.  There are several decent surgeons in the U.K. and to go privately can range from around £5,500 to £12,500 (the latter being in London).  You can get a list from the group I suggested you join on Facebook.  There is parathyroid surgery advertised on this page at the bottom but please do NOT even think of going to him.  He removed lymph nodes in mistake of adenomas on a friend of mine causing much suffering and then she flew to Florida but the NPC clinic still missed an adenoma causing more scar tissue and she was eventually cured after exhausting tests, venus sampling etc. around 9 months ago by Mr Palazzo in London.

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    • Posted

      Hello Elaine - how are you now?  I know you have quite a lot of symptoms.  Are you still struggling along, I think you were waiting to see a surgeon last time we spoke - have you got a date for your operation lined up yet/have you seen a surgeon?

      I remember your friend you mentioned on whom the surgeon removed lymph nodes instead of the adenomas, that was awful.  I think she had 2 ops prior to going to Tampa if my memory is correct??  The trouble is that once you've had so much surgery, it's so difficult to find left behind tumours amongst the scar tissue and scar tissue can look like cancer under the microscope.  When surgeons here don't know where to look some of them will spend hours exploring and you can just imagine the amount of scar tissue that must cause.  When I had my tumour, I was told by the same surgeon's colleague that if I had a scan that was negative, they would not operate at all so I would by now be even sicker if I had not gone to Tampa when I did, having already had the tumour for at least 6 years and been misdiagnosed initially for at least a year and given the wrong treatment.   My scan was negative in Tampa, you may recall I was one of the 20% of people with an ectopic adenoma which was buried in my thymus gland deep under my collar bone at the top of my chest so for me it was worth going to Tampa.  Finding it was helped by the gamma probe they have there as well as the expertise.

      I really hope having lost some of her lymph nodes that your friend is doing ok now? I hope she is now totally cured.

      Sounds like Mr Palazzo is the go-to surgeon in the UK but sounds like even he doesn't have the gamma probe if he did the dangerous venous sampling test.

      Kind regards.

      Rosemary

       

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    • Posted

      Looks like the consensus is to go straight to a surgeon. Thank you everybody! Now to pick the kind of surgery. Since I'm in Arizona, I have more options - almost everyone likes Tampa, but there are some doctors here that do variations of MIRP. What is acceptable? Should I insist on having all 4 glands checked? What about hands off surgery with remote controlled instruments? Is some kind of radioactive marking essential?

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    • Posted

      I didnt realise you were in the U.S. it sounded from the description of your endo that you were in the U.K.!!!!!   If it were me, I would make the trip to Tampa even though there are some decent surgeons in the U.S.  They check the four glands and so should all surgeons.  I believe they have a probe type thing like a geigercounter.  In the U.K. we have one da Vinci robot or whatever it is called but in Sheffield and I dont think it is used, not sure about that.  Probably cos nobody knows how to use it!!
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    • Posted

      Hi Rosemary

      ?I'm still plodding on and still not knowing for sure, first ultrasound said posible adenoma (only a tiny thing about 8 x 6mm) then five months later another private ultrasound in London and this time possible Graves thyroiditis.  Went on 12 weeks of vitamin D at around 35,000IU a week to "stir things up" even though I wasnt deplete.  Went back in July and had blood tests, nothng stirred up pth and calcium was exactly as in March PTH 5.4, Calcium 2.53 but Vitamin D 158.  When I queried about so called possible Graves, he said no if anything slightly underactive,

      TSH 4.3.   So on Monday at his insistence wants me to see another endocrinologist who is an expert on osteoporosis and hpt just to get him to say yay or nay with regards to exploring the neck.  The reason being the cost.  He said if he were still operating at the Hammersmith on the NHS would have no qualms but now at the Weymouth Hospital in London he says he is not in the habit of taking up people's savings!!   Going to this endo will be anothe waste of a few hundred as there is absolutely no way I would consider taking bisphosphonates.  My back pain is terrible, been going to a chiropractor who thinks its a combination of bone pain (even though we are told that osteoporosi is not painful unless you break something) plus really screwed up ligaments and muscles where I have constantly concentrated on not bending from the waist for fear of breaking a vertibrae. It's a mess, back not getting any better, if anything worse after saturday morning treatment and chiro not experienced in osteoporosis.  My friends mother in law today was diagnosed with myeloma in the spine and now that is playing on my mind.  My late husband also had a colleage in Melbourne who had terrible spine pain come on suddently, back and forth to doctors, x-ray and nothing showed so he was going to chiro for weeks then his wife had this terrible thought and demanded an MRI and it was bone cancer.  He died within two years and had awful chemo and goodness knows what else to no avail.  Makes one think.  So back to me I am still in the dark and in limbo.  SHall be tempted to jump on a plane to Florida myself.

      ?Anyway, thanks for asking.

      Elaine

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    • Posted

      Hi, just to answer here your specific question about the 'geigercounter', in Tampa, it is a gamma probe which reacts to the radioactive isotope they inject you with for the Sestamibi scan and the adenoma takes up the isotope. The probe is wired up to a small machine which when the probe is placed near to the tumour, it makes a loud buzzing noise and at the same time registers the amount of PTH the tumour is producing on the machine in real time.   They also take a very tiny biopsy of the other 3 glands and the probe also registers the exact amount of PTH each of the normal tumours are producing in real time so that is how they can be sure that the other glands are normal.  That's why they say check all 4 glands but you can't always tell just by looking if they are normal or not.  Once they have all this info, they can also work out how much calcium they need to prescribe for you once the tumour has been removed and your calcium level has dropped.

      Secondly, the Da Vinci Robot is almost always used for removing tumours specifically in the chest.  Instead of cracking open your sternum (which they do in the UK to get to a chest tumour) horrendous!, in Tampa they access the tumour through in between the ribs using the special robot.  They also have a chest surgeon who comes in about once a month to help when they have patients with chest tumours.  So you see that is why there is such a great benefit going to Tampa.  The operation is so much less invasive. Also you ALWAYS have more than one surgeon during your operation.   It is also VERY important not to break the tumour when it is removed otherwise lots of small tumours can seed all round your neck (like weeds) and if this happens then you cannot be cured, just treated when they grow.  Nobody is ever absolutely 100% perfect doing anything, but going to Tampa is as near to a 100% success rate as you will ever get. 

      Kind regards.

      Rosemary

       

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    • Posted

      Hi Elaine

      I am so sorry to hear that you are still suffering so much and still after all this time going round in circles going from pillar to post and at great expense and still getting nowhere.  I remember you said it has cost you a lot thus far, but rather than waste more money going to yet another endo, if I were in your shoes I would jump straight on that plane to Florida (as long as your results fit their criteria).  I do recall that Dr Norman operated on a patient to remove a tumour and he also at the same time diagnosed that the patient had Hashimoto's disease I think it was.  He could most likely tell you if you have Grave's or not.

      Dr Norman does have a calcium App which only costs a few dollars (up to about £5) which you key in y

      our results and it will tell you how likely it is that you have PHPT.  Your PTH is on the high side and your calcium is almost at the top of the normal range (top being 2.55).  As for the Vit D, at 150 it is now high, my UK lab range is 80-150.  If you send all your results to Dr Norman incl any bones scans, ECGs. etc (whatever he requests), then they can do a personal chart for you and let you know if you likely have a tumour.  Ignore your scans, they are wrong more than they are right.  If I were you I would NOT submit to the old Draconian exploratory op which means a GA, a large cut likely from ear to ear, and hours on the operating table, with the chance they won't find anything (or might remove a lymph node by mistake).  You really don't want that.  

      It's not surprising you are worried about your back pain and osteoporosis isn't painful when you have it due to menopause but with parathyroid disease, bone pain is a common symptom.  I had bone pain in my shins that kept me awake at night and also in my forearms and all the muscles and joints in my body ached and my muscles felt like they were on fire but then it was all made worse as they were giving me large doses of calcium and Vit D (for the wrong disease) when I already had high calcium and then the steroids for a year which was awful, also they gave me a PPI to cover the steroids so I was really rattling! and in the end I didn't know what was causing what.  All medicines are iatrogenic!

      If you do have PHPT, you simply cannot take bisphosphonates - they were designed for postmenopausal women with osteoporosis and not intended for use when it's caused by a parathyroid tumour, in the presence of a tumour, they will not work anyway because hormones are very strong and the PTH being a hormone will ovrride it.   People often have thyroid problems (or nodules) together with parathyroid problems and when Dr Norman's team operate, if there are thyroid lumps that need removing, he will do that at the same time and assess the thyroid too.   There are a small number of people who don't get high levels but get high normal levels but they can still have an adenoma.

      It's not very comforting to be told by the surgeon if he was still operating on the NHS he wouldn't mind opening your neck up on a fishing expedition since you weren't paying for it so if he couldn't find it, it doesn't matter because it didn't cost you anything!, but would feel worse if he robbed you of your savings achieving the same likely fruitless result!   As Dr Norman would say, "get up and run for the door"!

      I had one physiotherapist who pumelled my whole spine (which didn't feel good) and a physical therapist later said she should not have done that as it could cause damage!  I had a very stiff neck and shoulder muscles and I had 5 sessions with a physical therapist (not the same as a physiotherapist) and she worked on my muscles and now they are no longer stiff.  She was brilliant.  I would be very careful about letting anyone pummel your spine when you have osteoporosis, it could make things worse.

      The physical therapist did show me how to get out of bed without stressing my back.  If you roll onto your side and put one hand under one side of your face and then use the other arm to push yourself up, she said that is easier on your spine.

      If you are worried about myeloma, you can have a blood test and a urine test to check for that.  Because the parathyroid disease made a lot of my blood results abnormal, they did actually test me for it and it was clear.  You could ask for the tests just for peace of mind, they are very straight forward.   I'm very lucky, my GP is very interactive and patient-friendly and rarely refuses anything I ask for.  I've had 3 bone scans to name but a few.  A friend of mine couldn't even get one!

      I was very sorry to hear that you lost your husband, I didn't know that, and I am truly sorry for your loss.  It was terrible to read about your husband's colleage in Melbourne too who wasn't diagnosed correctly.  Poor man.   Have you had an MRI?  Maybe they would let you have an MRI just to check although as I said, PHPT does cause terrible bone pain.

      The bottom line is that you and I know how, shall we say, 'unfruitful' it is going to all these endos etc and at great cost and if you can contact Tampa and send your results in the first instance, that would be a good start.  If they say you are not a good candidate for whatever reason, I think that they give you a part refund but they have an enormous database and bucket loads of experience and would be able to tell you in a very short space of time - just think, you could be cured in just a few weeks and then from that moment you can start to heal.  Most people now know on this site that waiting is bad.

      Be your own advocate, take the bull by the horns and if you have to, try and borrow the money to start the ball rolling towards Tampa.  If your bloods show you likely have a parathyroid tumour, you could have it removed in just a few weeks and in time for Christmas then you can start your recovery.   

      In my case I was not allowed to go direct to a surgeon in the UK, they insisted I see an endo first!!  And as I said, they said if it didn't show on the scan then - no op !!  (and mine didn't)!  But it would also have been done by the surgeon in my area who also removed your friend's lymph nodes!!  So I had a lucky escape!!  At this point I lost interest in what the UK had to offer, told my GP I was going to Tampa and my GP printed all the copies of my results I needed (at no cost) and I emailed them all to Tampa and about 3-4 weeks llater I had my op.  Tampa is where all the doctors and surgeons go.

      I do realise all this is easier said than done, but what other option is there really.   I hope you get the results and treatment you need soon.  

      Let us know how things go on Monday.

      Kindest regards.

      Rosemary (sorry this is a long one)

       

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    • Posted

      I'll send you a private message as you cant post links up on this website.  I got an email this morning from parapeeps, they are three young woman who had tumours removed at Tampa and have formed a blog and work in conjunction with the Tampa Clinic.  There is going to be some sort of session going on in Tucson which I thought might interest you.

      Regards

      ?Elaine

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    • Posted

      Morning Rosemary

      ?Thanks for both of your posts.  Very informative. My head is in a whirl.  I know what you are saying about bone pain but I keep thinking that such a tiny if it is an adenoma could cause so much pain in my back and joints.

      ?I had thought about getting the app you suggested but I believe when I checked it is for android and my phone is windows.  Strangely enough I did read a blog put out by the Tampa clinic which seemed very close to me as regards to the woman's age and osteoporosis.  I have so many doubts in my head.  If it were not for the fact that I do not trust my surgery so I have all results printed off, I would not be sitting here pondering about pth.  The GP was a locum and very kind but was trying to convince me to chew on those awful adcal d3 tablets, she wanted me to have two a day equating to 3000mg.  It was only because she saw me on time (a miracle in itself) that I didnt have time to look at the results before I went in and when I got back to the town I found my calcium was over the range.  That was when I decided to go down the private route with a endocrinologist and what a fiasco that turned out to be!!  At the time I was on some Bone Strength supplements with prune powder, boron, silica and only 300mg of calcium collagen, a very expensive import from the States and it contained KoAct which was a relatively new thing.  So it appears that just that small amount of calcium a day was enough to increase it in my blood but still the endo was sending me for tests and not telling me to stop the supplements.  The chiropractor who I was corresponding with in the U.S. and also buying his Osteostim said immediately stop taking all supplements and go and get a pth test done.  Our surgery doesnt do that particular test as "it can go off in the van"!!!!!!!  So here I am 16 months later and £6,200 down the Swanny!!  So for the last 7 months my back has been getting progressively worse but I had a fall down the stairs on my back fortunately and was lucky I didnt break anything so am wondering if it has stemmed from that although I did that at the beginning of December.  Chiropractor says I am so stringent about no bending from the waist down and being ultra careful that I have caused the muscles and joints or ligaments to seize up in my back.  I now have a further problem, I care barely move my shoulder and today it is hurting right into my jaw.  That was caused through overreaching for things but fortunately not a frozen shoulder which I have had in the past in my writing arm.

      ?I will go to see this Dr Stevenson on Monday and it has been arranged but as I said I would never consider bisphosphonates under any circumstances with or without pth as Merck have had so many law suits against them for the beastly stuff that they were forced to add two additional side effects, ie hip fracture and crumbling jaw (I forget the technical term).

      ?The surgeon I see is not an ear to ear cut job fortunately, he was the first to introduce minimally invasive ops to the Hammersmith in 1984 and has been doing these operations since and is about retiring age now.  So I know I would be in good hands and also he insists on intra operative measuring to check there is nothing wrong with the other glands.  It is basically down to the money with him and of course as he said no surgeon likes a failure.  So it's a question of blowing in another £15k maybe for nothing and that would be the finish of my savings.  My dad died in January and left me a little bit of money.  If I lived in the U.S. it would be a no brainer as they say.  I am just a bit worried as knowing my luck something else would go wrong and you know what the U.S. is like for medical costs.  My stomach is in knots and this guy on Monday is supposed to be saying whether he recommends his old friend Mr Lynn to do the op or not.

      Anyway, bette press on and I will let you know what transpires.

      Kind regards

      Elaine

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    • Posted

      Good afternoon Elaine - thanks for your reply.  Just a quickie until later.  Re the adenoma being tiny and causing damage - it's not the adenoma per se it's the PTH hormone it produces, the PTH leaches the calcium out of your bones and it's this leaching process that causes the bone pain and the longer it goes on, the more damage etc it causes.  The bones when they lose calcium can also suffer tiny haemorrhages within them and that is another cause of the pain.  The bone pain with PHPT for me was like I had been kicked in the shins, an intermittent dull and very uncomfortable ache.  My bones were not as bad as osteoporosis, I had osteopenia but that was bad enough, I was only a smidgeon away from osteoporosis, my worst reading was -2 and osteoporosis starts at -2.5.  The impact on the bones has an effect on the muscles and ligaments too, I had clicking ligaments in both hips with it, every time I went to sit down, they were like 2 knitting needs clickng!

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    • Posted

      .....sorry, hit the button too fast!

      There is a BIG clue in what you said regarding your high calcium.  If you took extra calcium and that increased your level in the blood, if your parathyroid glands had been working normally then they would have produced less PTH which in turn would keep your calcium in the normal range - that's what they do!   When some unenlightened endos say people's calcium increased because they ate too much cheese or too many calcium-rich foods, Dr N says it's a nonsense, you would have to eat huge CRATES  of it for that to potentially happen.  The job of the parathyroid glands is to regulate the levels.  When your calcium drops after the tumour is removed, you have to take high doses of calcium to compensate but those high (often very high) doses don't push your calcium outside of the normal range, once the bad gland is gone and the normal ones wake up they will do their job of keeping the calcium in a very tight range.

      ...........have to go out now so will write back later....

      Kind regards

      Rosemary

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    • Posted

      Good evening Elaine (or should I say good morning since it's 1.15 a.m.)! sorry to be so late replying back again.

      I am glad that the surgeon you see is a 'cut above the rest' (sorry, no pun intended), but there are MIPs (Minimally Invasive Parathyroidectomy) and then their are MIRPs (which Dr N's centre does), Minimally Invasive Radio-guided Parathyroidectomy (the radio-guided bit referring to the Gamma Probe piece of equipment that the NPC has) and no-one else does.  The problem with intraoperative measurement of the PTH is that it takes nearly an hour to get the result whilst you are still on the operating table and it's also not that accurate.  Dr Norman's small gamma probe can register the exact levels in real time so no waiting around on the table.

      Very sorry to hear you lost your Dad in January.   (My Dad died at 54 (24 years ago) from a brain tumour secondary to lung cancer) and my mother is currently in remission from bowel cancer - and now has gallstones so may need another op.  It's all very stressful isn't it, I am sorry for your loss, it takes a long time to get over these things and doesn't help when you are feeling ill yourself.

      The NPC complication rate is near zero, their cure rate is higher than anyone else's and very nearly 100%.  I would not let the worry of something going wrong put you off, it is very, very rare indeed for any complications to occur which is why they do not have post-op aftercare as such because it isn't necessary.  Most overseas/out-of-area patients will stay in Tampa for a couple of days taking it easy and the surgeons give you their personal cell phone numbers so that you can call them if you have any concerns and most people stay at the 2 very local hotels they recommend which does a free shuttle service to and from the hospital.  The surgeons are not far away from the 2 hotels and only at the end of a 'phone.  There have been one or two difficult cases amonst the (3,600) ops they do every year but it is extremely rare.  There is so little risk from a local anaesthetic (if any at all), (you breathe for yourself unlike with a GA) and don't need a tube down your throat.   It also helps if you have not already had neck surgery before.

      I personally would not throw good money after bad in the UK if there's no guarantee they know what they are dealing with.  Parathyroid disease is not diagnosed with scans, the scans are to help with surgical mapping but Dr N wins hands down with that beause he has his special probe to help locate the adenoma.  Parathyroid disease is only diagnosed by blood tests i.e. high calcium and high PTH but even then there is a small number of people with high normal results but this group can still have an adenoma.  The NPC has the ability to give you an accurate diagnosis from all your results.  Your doctors here cannot even decide if you have an adenoma on your scan or not.  Scans are wrong more than they are right.  Before you waste all your savings, if I were you I would contact the NPC, collate all your results and send your results to the NPC so they can advise you how likely it is you have an adenoma by creating a personal chart for you and taking into account your medical history.  If for any reason your results do not indicate that you have an adenoma, I think they refund some of the consultation fee in those cases but at least then you will a very good idea if you likely have an adenoma or not.  If they don't think you do, then you could pursue your investigations in the UK further.

      BTW I'm not sure if Mr Glynn still does surgery, I know he went private for some time but not sure if he's still doing it.  I read his website when I had my tumour, (but I cannot find it on Google now), he had a lot of info about various different ways of doing parathyroid surgery, one of which was to pump the neck full of gas! (which is apparently very painful) and he said something like "some experts use a radioguided technique but it's no better/necessary (but that's because he hasn't got the gamma probe himself). 

      Another thing to consider is that recovery from a GA takes quite a long time but in Tampa you just have a local/light anaesthetic so there is very little chance of getting your voicebox damaged and you are fit to leave the hospital 1-2 hours later.  How amazing is that?  I just felt like I had had a little nap when I woke up.  I had no pain whatsoever, my neck did feel numb for quite a while but then they had to dig deep to bisect mine from my thymus gland but they did it .   You need to beware of any surgeon that does endoscopic surgery to remove an adenoma - if they break the adenoma (and there's a greater chance they will doing it that way) then cells can break off and can seed around the neck.  If you haven't already had any surgery on your neck then you have an even greater chance of being cured in Tampa.  If you could find someone to go with you, you could have a lovely holiday afterwards and soak up some sun and Vitamin D on the beach, that's what I did and it was lovely.

      It's now just over 2 1/2 years since my surgery and for some reason, these past few days I have felt even better than I had up to now.  Not that I was that bad, but I now feel even better.  My calcium is bang in the middle of the normal range and my other bloods are good.  The only reason I say I am about 85% is that I know my bones are stil negative numbers but they are less negative now.  Dr N said it could take up to 2 years or more to feel near normal again and he was right but everyone is different and all the wrong treatment in the beginning made me a whole lot worse as well so I got worse before I got better.

      Regarding the bisphosphonates, when I was diagnosed incorrectly with Polymyalgia Rheumatica, after the first scan the radiologist said I should take bisphosphonates (but I refused, I know they are bad).   But he did say on one of his reports to look for a seconday cause of the osteopenia.   Forward wind to correct diagnosis and parathyroidectomy, the 2nd bone scan showed a small improvement (but then I had been on steroids for a year so that scuppered my improvement)!, and the radiologist then said I didn't need bisphosphonates.  By the 3rd scan (a year afer PX), my bones had improved quite a bit (and I had said on the Bone Dexa form I was taking calcium and Vit D and drinking lots of milk) and he said carry on with this and that my latest bone fracture prediction no longer met the level at which they prescribe bisphosphonates!

      Anyway lots to think about.  Sorry it's so long again.  I hope whatever you decide to do that you will have the best possible outcome.  I do feel for you with so much suffering, I can empathise as I had so much of it myself.  Do let us know the outcome of seeing the surgeon on Monday.  Take care.

      Kind regards.

      Rosemary

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      Hello Elaine

      Just wanted to drop you a line as I found out something very interesting today.

      As of the beginning of this month, a new sister center of the NPC has opened led by an Endocrinologist who specialises solely in thyroid problems (particularly thyroid cancer).  He does not do parathyroids, only thyroids and he is extremely experienced.  He and Dr N will work closely together.  Your problem seems to be differentiating whether your have parathyroid or thyroid issues, or both.

      If I was in your shoes, I would therefore contact them and get your results sent off because you would get top class treatment for whichever was the problem.  Many people with PHPH often have benign concomittant thyroid nodules (common as you age) and the one seen on your scan could be a thyroid nodule but you could still have PHPT which hasn't shown up.  I just thought I would share that with you in case you were not aware of it.

      BTW re your back pain, the PHPT-related osteoporosis tends to be worse in the lower back, hips and wrists/forearms.  If you don't have a family history of OP then yours could well be due to an adenoma.  The OP worsens much more quickly with a parathyroid tumour than it does with normal postmenopausal bone loss.

      Hope you find this info at least a bit helpful.  Hope you get useful info from your consultant on Monday.

      Kind regards

      Rosemary

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      There are experienced surgeons in the UK tana; but as you say need to be hunted out.  I had a parathyroid tumour removed by a very experienced consultant working out of the Radcliffe teaching hospital in Oxford.  He told me that the problem with the late detection of tumours on the parathyroid in the Uk was mainly as a result of GP ignorance.  Most of his patients arrive on a stretcher.  I had keyhole surgery without any problems; immediate relief of all symptoms and this was followed up by a course of calcium and vit D supplements.  
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      Hi Rosemary

      ?Many apologies for not replying earlier.  Last week was a pretty busy week.  As for the appointment last Monday, he was very nice endocrinologist and can you believe I was in with him for almost two hours, I thought what the heck is this going to cost but £50 cheaper than the usual £300 for 15 minutes!!!  Anyway, the upshot is that he does think according to my blood tests there is a strong possibility of an adenoma.  He was even looking on the internet for cheaper surgeons in my area.  However, he said with the possible size of it, it might not grow any bigger but at the same time realises that because of my age, the longer it goes on the older I get.  The real problem as far as he sees is my osteoporosis, not just the spine which he said can have microscropic fractures causing me pain but the femur, in particular the femoral neck which was -3.0 two years ago and possibly worse.  He said it is a completely different thing breaking the thigh than the vertibrae.  He had suggested Prolia injections, bi yearly which I was not keen on because of the side effects and he said he felt they were not that common and at worst cause infections, ie skin, throat or urinary.  I said my main worry was my stomach as I could not go through all that 13 weeks of racing heart and nausea again.  So I left feeling slightly optimistic and in the meantime the admin had teamed me up with another lady who wants to go to Florida.  I am still having my doubts and do worry about getting sick afterwards and being stuck out in the U.S.  However, as I belong to the Osteoporosis Foundation (the U.S. website as the U.K. is very helpful, not!!!) someone had written has anyone had a rash with Prolia.  Like a fool I clicked on it and oh dear, quite a few came forward, GI, which I imagine is gastro intestinal problems, and the skin thing apparently large itching lumps which eventually went into raised blood spots.  I am thinking once six months of this ghastly stuff is pumped into you and you have a bad reaction what the heck do you do.  This doctor is writing back to Mr Lynn and my gp surgery and so in the meantime, I'm thinking what if I do arrange to go to Tampa and this Prolia makes me unfit to travel.  There is a lot to think about.  If only there were somewhere decent to go to that is not £15k in this country where all four glands are checked.  Someone recently had a surgeon Mr Jani remove an adenoma at the Nuffield in Cambridge which would be ideal for me and it is day surgery which is even better.  However, with something not definite with me makes me nervous.  Anwyay, that is the story so far....

      Elaine x

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      Hi Anabelle

      ?Nice to see you back again.  You mentioned the Radcliff in Oxford and I am really interested to know which surgeon you had as Oxford would not be beyonds the realms of possibility to me.  As I was explaining to Rosemary earlier, I am nervous of having someone operate in this country when there is one sonographer saying I have possible adenoma and then another six months later saying no, possible Graves thyroiditis.  Then having had blood tests since that last ultrasound, they apparently indicate if anything underactive thyroid so the latter sonographer has messed things up a bit for me.  I have a friend who I first met on this forum who was terribly ill with pth and she since went onto the Facebook group.  She had a surgeon in Oxford but unfortunately he missed a second adenoma and when she had the second removed eventually about three months or so ago by the same surgeon he accidentally cut through one of her vocal chords.  She is getting better but of course has a very croaky voice now which is not good being a child minder.  He was experienced with a good reputation I believe, Romanian origin by the name of Mr M (I dont know if we are allowed to mention names here).  So I feel I am in this predicament, I could have Mr L do it in London but with the overnight stay it is going to cost around £15k which is more expensive than going to Tampa.

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      Needless to say, I will not be going back to that chiropractor again, lovely as she was, didnt know anything about osteoporosis and my back is worse and my shoulder is much much worse after her trying to do a lumbar roll on me.  So a couple more hundred down the swanny and I specifically asked when first phoning for someone experienced with osteoporosis and the first thing she said was to see how far I could bend forward!!!!
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      I just noticed that one of your replies to tana has been deleted I wonder why, maybe you posted a link up or they were just being picky.  I have had that happen to me for absolutely no reason!
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      Hi elaine; I made the mistake of posting a link I think... so sent a private mail instead... problem with not allowing links to outside help is that these sites give comprehensive help; diagnoses and support ... I think I have seen your really helpful posts in the past with referrals to a group?  
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      I have looked at the moderation and it appears its because of a link.  I do think that they are being overzealous; because it would seem that links to medication sources and sources that sell goods are the quoted problem.  The links that they are not allowing however, are not in this category but are for support groups who work without profit and a website which gives free medical advice and support for this particular condition.
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      The Endocrine surgeon that I saw at the Radcliffe has extensive experience with the parathyroid; so I am puzzled by your friends experience because all cases would usually be overseen by this chap (look on the index of consultants on the hospital site) The consultant that saw me was English and the one that operated was a really efficient African who referred to the english consultant.  It was all done by keyhole after a CAT scan and there was no problem; no cost.  I did extensive research having read the comments on the American parathyroid site (that I can't mention but is run by Dr. N) and I was happy with the result; lead up to the operation and aftercare.  They were brilliant.

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      Glad to hear you were sorted.  I think the main problem here in the U.K. is many of the surgeons don't check all four glands and so that is where it leads to trouble and of course having had one removed, when a second is found it is more difficult cutting through the scar tissue.  Mr L does intra operative measuring whereby a pathologist is on standby and so it takes an extra half hour and if the pth hasnt dropped then they know there is another adenoma lurking somewhere else.  I think that the clinic in Tampa has state of the art equipment which we havent get got, probably because hpt is not regarded here as important.  There is a da Vinci robot at Sheffield hospital but apparently nobody uses it???

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      overzealous is putting in mildly.  Lots of links could help peope but that doesnt seem to matter and why I encourage sufferers to join the FB group.
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      I do know that the Endocrinologist at the Radcliffe checked all four and I have bloods taken annually to check the calcium levels are ok; so no problems at all. As for Sheffield...... presumably they haven't got a competent surgeon who deals with these day to day... it's shocking really.  I do think that perhaps a lot of ME patients actually have a parathyroid problem  which is not picked up because there is such ignorance.. the times that I have had to check that the bloods taken were for PTH and found that they had taken for Thyroid...

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    • Posted

      just found the info you needed... the surgeon you need to be referred to is Mr. Greg Sadler. at the Radcliffe, Oxford  You can google him.
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      Hi Elaine - many thanks for your reply, don't worry it wasn't sooner.  Glad the Endo was nice and gave you extra time. £300 for just 15 minutes is hugely expensive.

      I was a bit concerned when you said re the adenoma that he said "with the possible size of it, it might not grow any bigger" - what?? the adenomas grow due to an abnormal proliferation of cells - they don't stop growing, they just continue to enlarge over time causing increasing damage in the body and calcium continues to be leached from the bones leading to osteoporosis.  I can't believe he said that!!  I have heard of Prolia but I would not touch it with a barge pole.  The side-effects are awful and, as Dr N says, bone-ehancing drugs are NOT developed or recommended by drugs companies for use in people with a parathyroid tumour and since parathyroid tumours are hormonal and hormones are extremely potent, the drugs will not work.  BTW a low potassium level (hypokalemia) can cause heart palpitations and fast heart rate, might be worthing checking it.

      That's good that Admin teamed you up with another lady who wants to go to Florida.  People do express concern about potentially being sick afterwards whilst there but that really is extremely rare.  I think I read on Dr N's website that in 25,000 ops, they only had 2 people who needed to stay there for 1 night.  They would not be able to do 3,600 ops per year like they do if people regularly got sick afterwards and they all needed aftercare.  I did not let that very rare possibility put me off.   The surgeons do give you their personal cell 'phone numbers and you can ring them directly if you have any questions about anything.  They say when you get back home, visit your doctor a couple of months later to get your calcium level rechecked, it will take that amount of time to become normal.

      On the day I had my op in Florida, I met a nice Californian lady in her late 70s who had had her tumour for about 19 years and had gradually got sicker and sicker over the years.  Despite being a nurse for 42 years! she didn't know what was wrong with her.  She had her op right after me.  I later bumped into her the same day on the pier and she was walking around fine with her husband with just a little 1" cut and the standard bandaid on her neck.  As she had hers so long, Dr N removed her adenoma and also found a 2nd smaller one and removed that too.  Having just a local short twilight anaesthetic makes a big difference.

      One way to weigh all this up might be to compile a list of pros and cons for yourself, one for going to Tampa and one for having the op here.  There are various big diferences between the UK and the US op.  I know people on here say there are one or two good surgeons here (and I'm sure there are) who do check all 4 glands (which is good) and do intraoperativce PTH measurement (although it isn't actually very accurate, and it can take nearer an hour).  However these are likely the more straightforward cases who have the classic spontaneous single adenoma which is in the usual place behind the thyroid and not so difficult to find but if it turns out you are 1 of the 20% of people (like me) who has one buried deep in the thymus gland at the top of the chest (or lower) and it doesn't show on the scan (a known place where they can go), then it is unlikely they will find it without the benefit of the gamma probe that they have in Tampa.

      Yes you can have 'keyhole'/minimally invasive surgery here in the UK, but it is refered to as MIP (Minimally Invasive Parathyroidectomy) and in Tampa it is called MIRP (Minimally Invasive Radioguided Parathyroidectomy) which has the benefit of the gamma probe which when placed near a tumour, makes a loud buzzing noise and the nearer it gets, the louder the noise, and this also helps to carefully guide where the surgeon needs to cut.

      The other big benefit is that it is done with only a local anaesthetic so no intubation is needed which is what happened to your poor friend, the intubation increases the risk of damaging the vocal cord and not forgetting that a GA also means that you are not breathing for yourself.   For people who are sensitive to anaesthesia or have other health problems, having just a local twilight anaesthetic that only lasts about 20 mins is a huge benefit.  I had no pain or sickness afterwards whatsoever at any time.  They do give you maximum strength calcium (the appropriate highly absorbent calcium citrate with Vit D) afterwards so it would be extremely unusual to have a calcium problem after the op as they have you covered.  Once the tumour has been removed, you can then carry on with the calcium and Vit D supplements they give you and eat plenty of calcium-rich foods. The bones improve significantly in the first year after tumour removal, mine did.   I can well understand your nervousness since there have been different interpretations of your scans! and in that case if that were me I would be even more keen to go to Tampa (where all the doctors and surgeons go when they have this disesae).

      I believe the best and only course of action should be to get the tumour removed ASAP by a proven parathyroid expert and then aim to improve the bones with calcium-rich foods and calcium and Vit D supplements and subsequently bone-friendly exercise.  Dr N expects patients to have a bone Dexa scan at some point to check on bone improvement as well as a calcium check after about 2 months.

      You have a lot of thinking to do but if you can go with someone it won't feel so daunting.  Whatever you decide, I really hope that your adenoma(s) is/are found and removed so you can start to get well a gain.  I would be interested to know what you decide.  I also know of someone else who is making plans to go to Tampa.

      Rosemary xx

       

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      Hi all - Believe it or not, the 'wait and see' did actually work! The nodule has disappeared, PTH, calcium levels and Vit D now all normal, and the Dexascan of my bones showed osteopenia only, with very little change & some improvement. Still leaves me a little nervous, but I had a nodule in my lung that disappeared a while back, and my mother had a breast tumor that disappeared off the screen when they were going to aspirate it, and she never had another problem.She called it a miracle.

      Best guess is that I had secondary hyperparathyroid because of the extremely low Vit D, not primary because of the nodule. Crazy! But I am glad! Maybe my other problems will resolve themselves over time.... Thanks for all your advice - I will be signing off of this group now  because I have no advice to give or receive on this topic. Best of luck to all of you -

      Paula 

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      Hi I am vey glad for you that you feel better. After two small cancers and many doctors, I have really understood that medicine is a very complex science, and effects are different for each people. Best wishes for the futur
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