"Wait and See"?

Hormones
1

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 headache but 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!

2

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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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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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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..........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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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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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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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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Intact PTH was 75-81, calcium OK.

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Thanks, Elaine

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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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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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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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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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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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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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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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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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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