Digestive symptoms with Hyperparathyroidism.

Thank you, Rosemary. I'm getting a lot of gas, reflux and nause. My issue is that my calcium is only mildly elevated and my UK docs aren't very interested. Were you an 'obvious' case or a more subtle presentation?

Hello Ed 

-Oh dear,  that old chestnut again that the calcium is only mildly elevated!  It may only be a bit outside the normal range BUT usually it will still cause horrible symptoms and will still be doing damage.  In a nutshell  I was initially misdiagnosed at first with polymyalgia rheumatica and put on steroids for a year (that was awful) but then discovered what I had and long story short I went to the famous expert clinic in Tampa to have my adenoma removed.  Most doctors know little about PHPT and either dismiss the high calcium or give you the wrong diagnosis.  There are 21 different symptoms for this disease and I had a lot of them.  I had it for at least 6 years and was really ill before I got it fixed.  It will eventually led to osteopenia then osteoporosis and the adenoma(s) needs to be removed.

An elevated calcium and a raised PTH are the classic signs of this disease.

 

Rosemary  I was recently diagnosed as well...myLCA ION came back High 1.37 and Calcium level 11  I went to endocrinologist in June she said we will repeat blood in Aug.  I can't wait to have it done as i dont feel myself at all.  I thought perhaps its from the surgery i had 5 months ago for gerd and Hiatal Hernia repair...it was during my recovery that we discovered this because i had palpitations...now we discover its parahyperthyroid.  Now things come together as i read....the surgeons said they never saw a stomach w/so much acid...this must be why as well...they said literally "YOU MADE HISTORY"  therefore I had Hiatal hernia repair and Nissen fundoplication which is wrapping stomach around the esophogaes....I wonder if all this played a part of the severe gerd as well...Now i have developed my hands from time to time feels prickly and itchy, feet as well.  I have a tremor in my neck, and physically tired and short tempered.  It is so hard to distinguish is this all recovering as well from this major surgery...the fatigue.  Now i am trying to distinguish this blood level of the LCA ION....any advice ?  Liz

Hello Liz - apologies for the late reply but I have been away on holiday and on my return going through my emails saw your message.

I am sorry to hear that you are not feeling well.  GERD, fatigue, palpitations, irritability, elevated calcium are all some of the many symptoms of Primary Hyperparathyroidism which is what I actually had (not PMR which was my initial incorrect diagnosis).  I believe that your symptoms are mainly due to the parathyroid disease rather than post-op recovery although you can get fatigue post-op as well.

Presumably your Endocrinologist has told you that you have primary hyperparathyroidism.  With an elevated calcium it is highly likely.  It means you are likely to have a growth on one of the 4 parathyroid glands (which control the calcium level in the blood) and these 4 glands, the size of a grain of rice when normal, are in most cases situated behind the thyroid.  Sometimes all 4 glands are enlarged (4-gland hyperplasia) but in most cases it usually means just one gland has developed a growth and is producing more PTH than it should and this causes the calcium level to be higher than it should be.  Most people who have it have just one growth on one of the glands (an adenoma).  The adenoma will need to be removed.  If it isn't removed, more symptoms will develop and they will gradually get worse.  You will need to find an experienced parathyroid surgeon (which isn't easy) to remove the enlarged gland. (I went to a specialist clinic in Florida to have mine removed). 

The calcium level will fluctuate a bit because the adenoma causes the parathyroid gland to become out of control and produce too much parathyroid hormone which in turn removes calcium from the bones (leading to osteopenia and osteoporosis) and puts it in the blood and causes the calcium to be high.

My advice is ifyour calcium is still high in August, don't let them fob you off with the "let's just watch it" approach because things will just get worse.  You will need to get the adenoma removed.  I hope this helps.  Let us know how you get on.

Kind regards.

Rosemary

 

Thank You Rosemary  I hope you had a great holiday....I will go for blood work on Mon  tell me am i not supposed to take the vit d when going for the blood work.?  I want to say i recall dr saying stop day before is that true that its one day before and not two weeks someone mentioned?  Thx for all your info.,also what hotel did u stay when in Fla?

Hi Liz - thanks, yes I had a lovely time away.  We are having a few more days away this Tuesday too - trying to make the most of the sun!

We stayed at the Courtyard Tampa Downtown (102 E Cass St, Tampa, Fl 33602).  It was very nice and they were very helpful and there were lots of other patients there either waiting to have their op or who had recently had it.  They also organise a shuttle to take you to and from Tampa General (except my appt in the mornng was 5.15 a.m.and we went by taxi as the shuttle didn't start until 6.00 a.m. but that may have improved, they did take us back to the hotel after.  We then stayed in Florida for a 2-week holiday after my op, we hired a car and went to Clearwater first and then onto Fort Myers for a relaxing time, we had a wonderful stay.

A word of caution - when you have high calcium, you should NOT take Vitamin D (or calcium supplements) as this will make you feel worse and will not help.  When you have Primary Hyperparathyroidism (PHPT), most people have a low Vitamin D but that is because the body lowers it deliberately as a protective measure.  Before I had my adenoma/bad parathyroid gland removed, my surgeon instructed me NOT to take any Vit D or calcium in the weeks prior to my op.  He said they could be restarted once the adenoma was removed and the calcium and PTH were back to normal.  Taking them when you have an adenoma is the wrong thing to do.  I have not heard about not taking Vit D before a blood test - I only found that out once I had been in contact with my surgeon.  But since you should not take Vit D (or calcium) when you have PHPT, if I were you I would stop taking it period.  Taking Vit D (and calcium) when you have an adenoma increases your chance of having a heart attack or stroke and just makes you feel worse and also it won't help.  But once the adenoma has been removed, then you can take Vit D and Calcium.  PHPT always leads eventually to osteopenia and osteoporosis so you will need the calcium and Vit D once the tumour has been removed to improve your bones.

Which country are you in, I don't think you are in the UK???

Now you know you have this disease, my personal advice is to look at the website of the specialist centre in Tampa, Florida where I went (not allowed to give email addresses here) but their educational site about this disease is second to none and they understand this disease better than anywhere else in the world which is why I went there.  They lead surgeon has devoted 25 years of his life to perfecting his minimally invasive op with a local anaesthetic and it's all over in about 20 minutes.  They know from exoerience where to look for the adenomas.  Mine wasn't in the usual place behind the thyroid but deep under my collar bone in the top of my chest buried in my thymus gland.  They would never have found it over here.  It didn't show up on the Sestamibi scan in Florida but their special gamma probe also helped to locate it.  I am soooo glad I went there.

Anyway hope this helps.   I wish you all the best, let us know how you get on after your blood test on Monday.

Kind regards.

Rosemary

 

Rosemary   Thank You so much for the valuable advise.  I feel so awful these days...of course as i may have said i am still recovering from the Hiatal hernia operations and nissen fundoplication and attributed everything to that.  Until during early recovery my heart was palpitations and feeling awful...i am so down at times i want to cry at the drop of a hat....this weekend my hands were stinging and hip pain which i never had ..took tylenol as i dont do drugs of any kind.....it subsided   today i feel better...so many things going on one can get quite weary.....your advice i cherish ...i will be in touch when i have news...By the way i do live in the USA  Massachusetts....Florida is a 2 1/2 hour flight....what i fear is if something doesnt turn out the way expected and to be so far fromhome....my husband is 77 years old and it all scares me but i will do what i have to do i guess.....here im not so sure about the surgeon they recommended stating he was good....thats not good enough for me .  They indicated he did only thyroid surgery thats it....my sugeon who i love that did my stomach surgery recommend him dr jabiev ., i want to say his nurse said 6 or 9 surgeries all of thyroid problems didnt sound like just hyperparathyroid,  i dont know what to do as i am not thinking clearly either these days and these night sweats off and on i dont like.....i will be in touch    again thank you and God Bless   Elizabeth

Hi Liz

I am so sorry to hear that you are feeling so awful and I really can empathise because that's how I felt.  You do what you can to try and make yourself feel better and there is the odd day when you feel slightly better but then there are days when you feel really terrible.  I felt tearful too and I also had terrible headaches most days (I don't now)!  I know it takes a while to get over an operation, but a lot of your symptoms are also those of PHPT and of course despite your op, you won't feel as well as you might expect because you have high calcium (hypercalcaemia) which in itself makes you feel unwell.  I felt like I was going down with the flu most days too.

In the States PHPT is known by the pneumonic "itchy, twitchy, witchy and bitchy" because of the symptoms and in the UK doctors learn the symptoms by the pneumonic "bones, stones, moans, groans and psychiatric overtones".  The "bones and stones" refer to the symptoms of osteoporosis and kidney stones (quite a few sufferers get kidney stones, more common in men) and the "moans and groans" are the stomach symptoms and the "psychiatric overtones" are the depression-like symptoms that it causes and forgetfulness and it also makes people short tempered (when they normally wouldn't be).  There are 21 symptoms in all and I had quite a lot of them.  My surgeon said I had had my adenoma for at least 6 years and because it mainly affects postmenopausal women, some of the symptoms can overlap and it can often be mistaken for a few other diseases such as polymyalgia rheumatica, which I was incorrectly diagnosed with initially and then when the Rheumatologist prescribed steroids for it, a doctor I saw said all the increased symptoms were due to the steroids!!  It wasn't until I broke 3 teeth ! that another doctor said they had better check my calcium level and that's what brought to light my high calcium (that and a subsequent bone scan which then showed osteopenia, almost to osteoporosis level) not helped by steroids which also leach calcium from the bones!

...../Ctd   Liz, I will send you this bit and then another as it's quite long but it is useful to know all of this.

 

Ctd.  My flight was almost 10 hours to Tampa.  2 1/2 hours will go quite quickly.  You are right to trust your instincts and not choose the surgeon you were told only operates on the thyroid.  You need a real parathyroid expert, parathyroid surgery is quite tricky.  I have noticed that people have a habit of saying "my surgeon was good, he didn't cure me, but he was really nice"!!  Really??  It's not how nice they are, it's how skilled they are that matters, if these people weren't cured then those surgeons were not experts.  The thyroid is different to the parathyroids.  The parathyroids just happen to be situated behind the thryoid anatomically but they have nothing to do with the thyroid, they have a different role in the body.  You need an expert parathyroid surgeon and going to a surgeon who has only done a handful of ops, that means he/she isn't an expert.  This would result in you not being cured and then needing a further operation.  In Tampa they do approx 3 re-ops every day because the patients weren't cured the first time around.

One of the biggest benefits of the surgery in Tampa is that it is done WITHOUT a general anaesthetic so there is much less chance of damage to your vocal cord.  Also the recovery is so much quicker, the surgery takes approx 20 minutes under a local anaesthetic (you are still asleep so know nothing of it) and you can leave the hospital approx 1 or 2 hours later.  Most people go out to dinner afterwards the same evening.  I just felt like I had had a peaceful nap afterwards, there was no sickness at all and I didn't feel as if I had had an anaesthetic even.  It was truly amazing.  I had never had an operation before but I was relieved at how smoothly it all went. 

Regarding anything going wrong, it's virtually unheard of in Tampa, they have an almost 100% success rate and in any case the hardest cases are usually the people who have already had at least one failed surgery because every surgery causes scar tissue and that gets in the way (and can also resemble cancer under the microscope).  You have to send in a series of results for them to compile a personal chart for you and they can then confirm whether you definitely are likely to have an adenona looking at the blood results and if there are any other issues that could prevent your surgery. 

When I had my op, we met a very nice couple from California and the wife had surgery just after me.  She was in her 70s and ironically had been a nurse for over 40 years - and she had had her adenoma for up to 20 years and didn't realise that she had PHPT.  It turned out that she had 2 adenomas removed - the second one was half the size of the first one.  Her husband said to me that she used to be able to walk 8 miles a day but by the time she had her op, she couldn't walk anywhere.  Her 2 adenomas were in the usual place just behind her thyroid and she had the 1 inch bandaid that the surgeons put on the little incision.  We bumped into them again on a pier a few hours after she had her op and she was fine.

Anyway, I perambulate too much - sorry - but I really truly wish you all the best and hope you will be cured soon, the sooner the better.  Take care.  God Bless and look forward to hearing how it all goes.

Kind regards.

Rosemary

My flight was almost 10 hours to Tampa.  2 1/2 hours will go quite quickly.  You are right to trust your instincts and not choose the surgeon you were told only operates on the thyroid.  You need a real parathyroid expert, parathyroid surgery is quite tricky.  I have noticed that people have a habit of saying "my surgeon was good, he didn't cure me, but he was really nice"!!  Really??  It's not how nice they are, it's how skilled they are that matters, if these people weren't cured then those surgeons were not experts.  The thyroid is different to the parathyroids.  The parathyroids just happen to be situated behind the thryoid anatomically but they have nothing to do with the thyroid, they have a different role in the body.  You need an expert parathyroid surgeon and going to a surgeon who has only done a handful of ops, that means he/she isn't an expert.  This would result in you not being cured and then needing a further operation.  In Tampa they do approx 3 re-ops every day because the patients weren't cured the first time around.

One of the biggest benefits of the surgery in Tampa is that it is done WITHOUT a general anaesthetic so there is much less chance of damage to your vocal cord.  Also the recovery is so much quicker, the surgery takes approx 20 minutes under a local anaesthetic (you are still asleep so know nothing of it) and you can leave the hospital approx 1 or 2 hours later.  Most people go out to dinner afterwards the same evening.  I just felt like I had had a peaceful nap afterwards, there was no sickness at all and I didn't feel as if I had had an anaesthetic even.  It was truly amazing.  I had never had an operation before but I was relieved at how smoothly it all went. 

Regarding anything going wrong, it's virtually unheard of in Tampa, they have an almost 100% success rate and in any case the hardest cases are usually the people who have already had at least one failed surgery because every surgery causes scar tissue and that gets in the way (and can also resemble cancer under the microscope).  You have to send in a series of results for them to compile a personal chart for you and they can then confirm whether you definitely are likely to have an adenona looking at the blood results and if there are any other issues that could obstruct surgery. 

When I had my op, we met a very nice couple from California and the wife had surgery just after me.  She was in her 70s and ironically had been a nurse for over 40 years - and she had had her adenoma for up to 20 years and didn't realise that she had PHPT.  It turned out that she had 2 adenomas removed - the second one was half the size of the first one.  Her husband said to me that she used to be able to walk 8 miles a day but by the time she had her op, she couldn't walk anywhere.  Her 2 adenomas were in the usual place just behind her thyroid and she had the 1 inch bandaid that the surgeons put on the little incision.  We bumped into them again on a pier a few hours after she had her op and she was fine.

Anyway, I perambulate too much - sorry - but I really wish you all the best and hope you will be cured soon, the sooner the better.  Take care.  God Bless and look forward to hearing how it all goes.

Kind regards.

Rosemary

My flight was almost 10 hours to Tampa.  2 1/2 hours will go quite quickly.  You are right to trust your instincts and not choose the surgeon you were told only operates on the thyroid.  You need a real parathyroid expert, parathyroid surgery is quite tricky.  I have noticed that people have a habit of saying "my surgeon was good, he didn't cure me, but he was really nice"!!  Really??  It's not how nice they are, it's how skilled they are that matters, if these people weren't cured then those surgeons were not experts.  The thyroid is different to the parathyroids.  The parathyroids just happen to be situated behind the thryoid anatomically but they have nothing to do with the thyroid, they have a different role in the body.  You need an expert parathyroid surgeon and going to a surgeon who has only done a handful of ops, that means he/she isn't an expert.  This would result in you not being cured and then needing a further operation.  In Tampa they do approx 3 re-ops every day because the patients weren't cured the first time around.

One of the biggest benefits of the surgery in Tampa is that it is done WITHOUT a general anaesthetic so there is much less chance of damage to your vocal cord.  Also the recovery is so much quicker, the surgery takes approx 20 minutes under a local anaesthetic (you are still asleep so know nothing of it) and you can leave the hospital approx 1 or 2 hours later.  Most people go out to dinner afterwards the same evening.  I just felt like I had had a peaceful nap afterwards, there was no sickness at all and I didn't feel as if I had had an anaesthetic even.  It was truly amazing.  I had never had an operation before but I was relieved at how smoothly it all went. 

Regarding anything going wrong, it's virtually unheard of in Tampa, they have an almost 100% success rate and in any case the hardest cases are usually the people who have already had at least one failed surgery because every surgery causes scar tissue and that gets in the way (and can also resemble cancer under the microscope).  You have to send in a series of results for them to compile a personal chart for you and they can then confirm whether you definitely are likely to have an adenona looking at the blood results and if there are any other issues that could obstruct surgery. 

When I had my op, we met a very nice couple from California and the wife had surgery just after me.  She was in her 70s and ironically had been a nurse for over 40 years - and she had had her adenoma for up to 20 years and didn't realise that she had PHPT.  It turned out that she had 2 adenomas removed - the second one was half the size of the first one.  Her husband said to me that she used to be able to walk 8 miles a day but by the time she had her op, she couldn't walk anywhere.  Her 2 adenomas were in the usual place just behind her thyroid and she had the 1 inch bandaid that the surgeons put on the little incision.  We bumped into them again on a pier a few hours after she had her op and she was fine.

Anyway, I perambulate too much - sorry - but I really wish you all the best and hope you will be cured soon, the sooner the better.  Take care.  God Bless and look forward to hearing how it all goes.

Kind regards.

Rosemary

My flight was almost 10 hours to Tampa.  2 1/2 hours will go quite quickly.  You are right to trust your instincts and not choose the surgeon you were told only operates on the thyroid.  You need a real parathyroid expert, parathyroid surgery is quite tricky.  I have noticed that people have a habit of saying "my surgeon was good, he didn't cure me, but he was really nice"!!  Really??  It's not how nice they are, it's how skilled they are that matters, if these people weren't cured then those surgeons were not experts.  The thyroid is different to the parathyroids.  The parathyroids just happen to be situated behind the thryoid anatomically but they have nothing to do with the thyroid, they have a different role in the body.  You need an expert parathyroid surgeon and going to a surgeon who has only done a handful of ops, that means he/she isn't an expert.  This would result in you not being cured and then needing a further operation.  In Tampa they do approx 3 re-ops every day because the patients weren't cured the first time around.

One of the biggest benefits of the surgery in Tampa is that it is done WITHOUT a general anaesthetic so there is much less chance of damage to your vocal cord.  Also the recovery is so much quicker, the surgery takes approx 20 minutes under a local anaesthetic (you are still asleep so know nothing of it) and you can leave the hospital approx 1 or 2 hours later.  Most people go out to dinner afterwards the same evening.  I just felt like I had had a peaceful nap afterwards, there was no sickness at all and I didn't feel as if I had had an anaesthetic even.  It was truly amazing.  I had never had an operation before but I was relieved at how smoothly it all went. 

Regarding anything going wrong, it's virtually unheard of in Tampa, they have an almost 100% success rate and in any case the hardest cases are usually the people who have already had at least one failed surgery because every surgery causes scar tissue and that gets in the way (and can also resemble cancer under the microscope).  You have to send in a series of results for them to compile a personal chart for you and they can then confirm whether you definitely are likely to have an adenona looking at the blood results and if there are any other issues that could obstruct surgery. 

When I had my op, we met a very nice couple from California and the wife had surgery just after me.  She was in her 70s and ironically had been a nurse for over 40 years - and she had had her adenoma for up to 20 years and didn't realise that she had PHPT.  It turned out that she had 2 adenomas removed - the second one was half the size of the first one.  Her husband said to me that she used to be able to walk 8 miles a day but by the time she had her op, she couldn't walk anywhere.  Her 2 adenomas were in the usual place just behind her thyroid and she had the 1 inch bandaid that the surgeons put on the little incision.  We bumped into them again on a pier a few hours after she had her op and she was fine.

Anyway, I perambulate too much - sorry - but I really wish you all the best and hope you will be cured soon, the sooner the better.  Take care.  God Bless and look forward to hearing how it all goes.

Kind regards.

Rosemary

My flight was almost 10 hours to Tampa.  2 1/2 hours will go quite quickly.  You are right to trust your instincts and not choose the surgeon you were told only operates on the thyroid.  You need a real parathyroid expert, parathyroid surgery is quite tricky.  I have noticed that people have a habit of saying "my surgeon was good, he didn't cure me, but he was really nice"!!  Really??  It's not how nice they are, it's how skilled they are that matters, if these people weren't cured then those surgeons were not experts.  The thyroid is different to the parathyroids.  The parathyroids just happen to be situated behind the thryoid anatomically but they have nothing to do with the thyroid, they have a different role in the body.  You need an expert parathyroid surgeon and going to a surgeon who has only done a handful of ops, that means he/she isn't an expert.  This would result in you not being cured and then needing a further operation.  In Tampa they do approx 3 re-ops every day because the patients weren't cured the first time around.

One of the biggest benefits of the surgery in Tampa is that it is done WITHOUT a general anaesthetic so there is much less chance of damage to your vocal cord.  Also the recovery is so much quicker, the surgery takes approx 20 minutes under a local anaesthetic (you are still asleep so know nothing of it) and you can leave the hospital approx 1 or 2 hours later.  Most people go out to dinner afterwards the same evening.  I just felt like I had had a peaceful nap afterwards, there was no sickness at all and I didn't feel as if I had had an anaesthetic even.  It was truly amazing.  I had never had an operation before but I was relieved at how smoothly it all went. 

Regarding anything going wrong, it's virtually unheard of in Tampa, they have an almost 100% success rate and in any case the hardest cases are usually the people who have already had at least one failed surgery because every surgery causes scar tissue and that gets in the way (and can also resemble cancer under the microscope).  You have to send in a series of results for them to compile a personal chart for you and they can then confirm whether you definitely are likely to have an adenona looking at the blood results and if there are any other issues that could obstruct surgery. 

When I had my op, we met a very nice couple from California and the wife had surgery just after me.  She was in her 70s and ironically had been a nurse for over 40 years - and she had had her adenoma for up to 20 years and didn't realise that she had PHPT.  It turned out that she had 2 adenomas removed - the second one was half the size of the first one.  Her husband said to me that she used to be able to walk 8 miles a day but by the time she had her op, she couldn't walk anywhere.  Her 2 adenomas were in the usual place just behind her thyroid and she had the 1 inch bandaid that the surgeons put on the little incision.  We bumped into them again on a pier a few hours after she had her op and she was fine.

Anyway, I perambulate too much - sorry - but I really wish you all the best and hope you will be cured soon, the sooner the better.  Take care.  God Bless and look forward to hearing how it all goes.

Kind regards.

Rosemary

 

OOPS sorry - I cut and pasted my reply so I wouldn't lose the text so it's not as long as it looks it's just that it had duplicated what I wrote - sorry!

I am so grateful to you Rosemary as I was beginning to think I am losing my mind...how can i possible have so many things wrong with me.....Before this HH repair & Nissen I said to my husband i have a bucket list to tend to after surgery...not knowing I had this and its a contributing factor....the head tremor is scarey and chest pains.....I cant thank you more for making me feel its all part of this disease....Here we rely on the advice of our doctors that we have to trust.....and she will have me waiting 2 yrs for the next ultra sound...imagine?  Thank You and God bless You for helping me.....I feel like I know you and wish we lived closer... xo Liz

Awww thank you Liz, I was very happy to share my story and what I know, and am glad it has helped you.  It's very lonely when people simply don't understand just how bad having PHPT makes you feel and having to live with all the horrible symptoms.

Regarding the depression-type symptoms, the Tampa website has a blog written by a Psychiatrist who says that people don't just suddenly develop depression-type symptoms and that when doctors refer patients to her, the first thing she does is have them do a blood test to see if their calcium is high because so many patients are misdiagnosed with depression and given antidepressants when in fact it is being caused by the high calcium.  Every cell of the body needs a certain amount of calcium, not too much and not too little, which is why it's tightly regulated by the parathyroid glands.  The high calcium affects the central nervous system which includes the brain so it causes brain fog and depression-like symptoms.

Take heart because you will be pleased to know that when the adenoma is removed, this all goes away and you will after a little while feel normal again.

Unfortunately doctors (although they mean well) don't always get it right first time (as I discovered to my cost) so we need to be our own advocates.  If you go to a specialist parathyroid surgeon you will get better from this and feel pretty much normal again although everyone has a different recovery rate.  Think positive.  It is a disease that can be cured - if the adenoma is removed.  Take care.  Rosemaryxx

 

Rosemary   Will they have me on meds when i leave?  Do they phone the house when i return home to check on things?  We are sch'd to go on a cruise Oct mid., i wonder if i get started now will they schedule surgery quickly in Fla..I read 3 weeks from whem they get blood tests....do they order any tests here for me to have done?

Hi Liz - Well the gamma probe they have which helps locate the tumour, is wired up to a machine which can tell exactly how much PTH is being produced in real time by the adenoma and how much the other 'dormant' parathyroids are producing which will confirm whether they are all normal.  They can work out from all their information how much calcium+Vit D/what dose they need to give you and they give you a packet of calcium tablets to take away with you.  You can buy the calcium tablets from a Wallmart store afterwards. 

When you leave the hospital and go back to the hotel, the surgeon will either call you in the evening to see how you are/discuss any issues, or they will give you their cell 'phone number so you can call them.  They are very obliging.  There isn't any real need for them to speak to you once you go back home.  They tell you to get your calcium and PTH checked by your doctor 2 months after the op once everything has settled and the normal 'dormant' parathyroids have woken up and both readings should be back in the normal range by then. 

Nothing in life is ever guaranteed but it is extremely rare for there to be any real problems afterwards.  I did myself email the surgeon's nurse while still in Tampa and they replied promptly and also I emailed the surgeon from the UK with a few questions and he replied very promptly.  Because I was one of the 20% of people whose adenoma wasn't behind the thyroid (it was deep under my collar bone buried in my thymus gland), they had to dig a bit deeper to remove it and I had a lot of bruising but then I was also on steroids for the presumed polymyalgia that wasn't and when you are on steroids you do bruise very easily.  I had no pain at all or any other problems, I did have some swelling around the scar but the main thing was the bruising.  My husband took pictures of it on his mobile and emailed them to the nurse to get checked and they said it was all normal bruising - and it was.  No problems, just didn't look very nice!  You can barely see my 1" scar now, the surgeon closed the wound with plastic surgery stitches - they really are good there.  So there should not be any worries.

If you contact them they will tell you what tests you need to get done beforehand, such as a small number of calcium tests and a PTH and in my case I had already had an ECG done because I got heart palpitations too so I sent that and a copy of my bone scan which showed osteopenia.  Once I had all my results and sent them, my op was offered pretty quickly, around the 3-week period (and it was in December when they were very busy).  You should not have to wait too long at all, I would think you could get it all done before your cruise if you start now.  They have more surgeons now than when I went in 2013 so it should be pretty prompt.  They do charge for a 'consultation' where they gather your results and create a personal chart for you but my understanding is that if from your results if they find you are not a good candidate for surgery (for whatever reason) then they charge less for the work they did/consultation.  I can't see why you would not be eligible though as your calcium is definitely high.  Hopefully there won't be any issues.  Hope this helps.

Rosemary x

Rosemary   I went for labs this morning, they did not order the PTH as i asked the girl who was drawing the blood....i phoned the endo her nurse just phoned me i told her my symptons and fatigued and all that i felt she said i can tell you your labs just came back and can only say that the calcium is 10.4  that is what suggests whenu have a problem....i told her i have an adenoma which the endo found and is doing another ultra sound in nov. i dont want to wait ....i went off vit d as you or someone suggested on sat. could that have brought it down? i told her i dont feel myself at all..headache most every day, tired all the time, hip pain on wkend , hands stinging terribly.  Today the hands are better and i feel somewhat better....what do u suggest now?  she said she will get back to me sometime today...she has my cell number as we are going to church at noon ....I dont know what to make of this...I almost felt like she was patronizing...because she said dont worry about this and enjoy your day....what do they think im making it up? Sorry to trouble you but you know more than I will ever with this and I need to make myself well.  I told her i feel like I've become a hypocondriac for which im not at all....its like im justifying how badly i feel....i will be in touch and thx for any info u may offer   xoLiz

Hi Liz

Oh dear your doctors are not very helpful are they especially since your Endo has already apparently found your adenoma on a scan, why then would they want to do another scan??  Sounds bonkers to me.

The fact that your calcium has come down a little bit is irrelevant.  When you have an adenoma, the gland which is affected becomes out of control (like a thermostat gone wrong) so sometimes it throws out a lot of hormone and sometimes it is less.  If all 4 glands were working properly (and none of them had an adenoma) then your calcium level would always be in the normal range i.e. less than 10 because it is their job to keep the calcium under control in a tight range for the body to function properly.

Well, if I was in your shoes I would forget your doctors (like I did) and get your paperwork ready to send to Tampa if you do intend to go there.  The best thing about it is that you do NOT have to be referred by your doctor, all you need to do is to obtain copies of your results from them to send to Tampa.  They do not want people to have any scans done before going to them because they do their own 15-20 minute Sestamibi scan.  They have a very high resolution Sestamibi scanner and it only takes 15-20 minutes.  They are not interested in other doctors' scans and won't look at the (they are usually wrong and often of poor quality).   They also do their own ultrasound just prior to operating.  Their scanners tell them where the adenomas are NOT located as much as where they are and often they do not show up (like mine, it was deeply buried in my thymus gland and didn't show up) but they are experts and know where to look for them and of course they have the special gamma probe (which they invented and patented).  I was told by a doctor here in the UK that if the Sestamibi scan didn't show an adenoma then they would not operate so I would have been even sicker by now if I had not gone to Tampa.  But my Tampa surgeon found and removed it in about 20-30 mins.

I agree with you, why would you want to wait especially when is a better, quicker and much less invasive alternative i.e. going to Tampa.  They don't mess about, they tell you as soon as they analyse your results if surgery is appropriate.  It would be good to know what your PTH level is, but the fact your calcium has been out of range at least twice now is indicating a problem.  If I were in your shoes, and this is my personal view, I would take the bull by the horns and send off your results to Tampa as soon as possible although Tampa may require at least one PTH reading before you go there.

I know only too well just how bad this disease makes you feel.  You feel like you are going round in circles - because you have some better days it makes you think sometimes you are imagining things but you really are not, that is the nature of this nasty disease.  Although it is almost never a cancerous adenoma, my surgeon says the disease behaves like a cancer in the body and over time causes more symptoms and more damage which is why it is never acceptable just to keep on monitoring the high calcium levels, you need to get the adenoma removed before the body can start to heal.  I wish there was something I could suggest to make you feel better but there isn't anything that will really help until the adenoma is removed.  I had terrible bone pain in my shins and forearms that kept me awake all night due to the calciun loss but now my adenoma has gone, I don't have it any more thank God and I have managed to put a good amount of calcium back in my bones since my op in Dec 2013 proven by a Bone Density scan.  By the way the fatigue is the number one horrible symptom of PHPT and I used to start to fall asleep by midday and this is a classic symptom.  This disease wrecks your life.  My advice - don't wait, life is too short.

By the way, one last thing, the adenoma needs to be removed all in one piece.  If it is broken on removal, little pieces can seed all round your neck. Because the tissue is glandular and hormone-producing, that would be a huge problem, you would end up with lots of little adenomas all producing too much PTH!  This is one reason why it is soooo important to have a specialist surgeon like those in Tampa.  After your op they send you (and your doctors) paperwork which includes a lifesize colour photo of the adenoma(s) they remove from you and you can see it is all in one piece, which is one of the reasons they do this as it is proof that the tumour was removed whole.  Hope this helps.

Blessings to you.  Rosemary xx

 

Rosemary  First visit to this endo report reads: I did a realtime ultrasound of the thyroid gland in 2 planes using linear transducer and the findings are: R lobe of the thyroid gland is surgically absent.  L lobe is present and measures 4.69 x 1.79x2.39 cm.  There were 2 nodules present in that lobe ,the first one was located in the inferior pole of that lobe and measured 1.36x 1.03x1.14cm.  Its margins were regular and there was some enhancement artifact in rather hypoechoic nodule.  There was no posterior acoustic shadowing.  So this could very well have polarized colloid,but it was not clear to me.Vascularity was quite generous w a grade of 3-4/4 byDoppler.  Located right next toit a little more superiorly in what I would call the middle aspectis another hypoechoic nodule w an area of cystic dengeneration.  This nodule meaasures 1.32x0.96x1.16cm.  The margins were more regular w/o calcification and it did contain an area of cystic degeneration and polarized colloid.Both nodules were biopsied under direct ultrasound.

Impression:  Liz has a goiter in the setting of a history of a previous fine needle aspiration w/benign cytology.This all dates back 2015......Now 6/21/2016   right thyroid lobectomy for benign disease 40 yrs ago.  Left lobe 1.36 x1.03x1.14 nodule that had been biopsied 2 yrs ago which was benign.  ultrasound findings: done in 2 planes high frequency linear transducer L Lobe: 4.71x1.80x2.26 cm  Nodule 1 was a hypoechoic nodule,well defined margins.  It had multiple echogenic foci consistent w cats eye atrifacts.  there was no shadowing. I recom  a ultrasound follow up in 2-3yrs.  

Rosemary this is the report from my visits I will ask for a copy of the blood work when she phones today and yes i am getting on with the paper work i dont want this nonsense anylonger....Basically she is waiting for something to happen before she treats it as i can see...

bottom of this says Diagnosis: Nontoxic mutinodular Goiter

Thats it my friend if you can make sense of it....thx for all your info again  Liz xo

i

Hello Liz

Just saw your message.  Well, I'm not a doctor so I can only tell you what I know from experience and with my own disease.  It would seem that you have two different medical issues.

The Endo report is talking specifically about your thyroid gland.  You have a thyroid goitre and a couple of nodules in the remaining left lobe of your thyroid, the right lobe having been removed 40 years ago.  None of this appears worrying and biopsies were benign and the repeat ultrasound coming up is just to keep an eye on the size etc of the nodules. 

The other issue that you now have is that you have an elevated calcium level (in the blood).  This does NOT have anything to do with the thyroid gland, it's a separate issue.  However, this is where it gets confusing - behind the thyroid gland there are 4 tiny PARAthyroid glands which regulate the calcium level in the blood to within a tight range (as I explained earlier).  These 4 glands just happen (normally) anatomically to be located behind the thyroid gland and regulate the body's blood calcium level.

The fact that your calcium level is elevated suggests that you likely have an adenoma (benign tumour) on one of your 4 little parathyroid glands.  When a part of the thyroid is removed, or the whole thyroid is removed, the surgeon has to be VERY careful not to inadvertently remove any of the parathyroid glands.  They are very small and sometimes they can become tangled up in the thyroid tissue which may need to be removed such as in the case of a goitre. (I have a friend who had a thyroid goitre and lost at least one of her parathyroid glands when her thyroid was removed).  You can live with just one parathyroid gland but if all 4 were removed, then life would be very difficult and people then have to take daily calcium for the rest of their lives.  This situation needs to be avoided.

Most people with a parathyroid adenoma (which causes the high calcium), usually have just 1 adenoma so only 1 bad gland is then removed.

All of this makes it even more important that you choose your surgeon wisely.   I did not see anywhere on your Endo report where it mentions parathyroid nodules, it only mentions thyroid nodules.  Since you have only recently found out that you have high calcium and potentially an adenoma, maybe your Endo was planning to do a scan to try and locate where your parathyroid adenoma is as well as a check of your thyroid nodules.

Now the thing is, in regard to going to Tampa, they carry out only parathyroid surgery.  That said when they remove the adenoma with the bad parathyroid gland, they are very good because if they come across any thyroid nodules that they think need to be removed, they will do that as well and they check the thyroid to make sure that it is normal.  But you cannot go there just for a thyroid operation.  The thyroid treatment if it is necessary, is done in addition to the parathyroid surgery.

You will have to consult with the Tampa centre to find out if your parathyroid surgery could be done there given your previous thyroid surgery (surgery causes scar tissue and makes it difficult to carry out further operations).  You will have to give them all the information about your previous thyroid surgery as well as your calcium readings so they can assess your details very carefully and consider whether it will be possible for them to carry out your surgery.  I hope they will be able to do it since they are the most experienced place to go and have a very high success rate.  They normally do carry out the surgery even if it is tricky but it does depend on individual circumstances. 

I hope this info helps.  It can be rather confusing.  Most people have not heard of the parathyroid glands and when you say parathyroid, they still think you mean thyroid.   What is also confusing is that there are various thyroid and parathyroid diseases: 

There is hyperthyroidism and there is hyperparathyroidism, then there is hypothyroidism and hypoparathyroidism and people often get them mixed up (even a Rheumatologist I saw wrote in her letter that I had "hyperthyroidism" by mistake instead of hyperparathyroidism !)  It can be confusing.  Hyper means too much and hypo means too little and para means around - the parathyroid glands are "around" the thyroid gland (well behind it but sort of around it).  Good luck with sending in all your details, I will keep my fingers crossed that they will be able to carry out your surgery after analysing your results.

By the way, about 50% of middle aged people develop thyroid nodules and they occur more as you age and my surgeon said the vast majority of them are harmless.

Hope this helps.  Blessings.

Rosemaryxx

 

Hello Liz

I was wondering how you are and what was the outcome of your Endo ringing you?  Hope you are ok,.

Rosemaryx

Hi Rosemary   The dr's nurse phoned me to say I have no adenoma and that i have mild primary hyperparathyroid she said the 24 hr urine was ok, Vit D level is 41.8 PTH 51 ....she says everything is normal  I asked why i didnt have the TSH and 3T4...she ordered them and i got results on Fri she said those were normal....I cant figure this whole thing out she says one thing and endo said differently.  I am making an appt with the primary dr and have him figure this all out...then why do i feel the way i do?  also the calcium was 11.4 now 10.4 therefore not need to worry she said...im ready to throw the towel in i am so disgusted with it all.....either i have an adenoma or i dont and now she says u had 2 nodules now only one shows...well where did the other go since spring?  Rosemary I dont get it and i do now have osteopinea so that is all i know right now,,,toooo confusingI wish i had better news i just asked that she send all the blood work to me...and i will have to go from there.anyway she wont recommend a surgeon because she is saying i dont have hyperparathyroid because my calcium was 11.4 now its down 10.4 nothing to worry about..in Nov she will do another ultrasound...thats basically it for now...thx Rosemary I will let u know when i know something....many thx again  x liz