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I had PHPT and was cured in Tampa

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rosemary25383
rosemary25383

Hello

I just found this forum today and have read some of the posts.

I would like to share my story in the hope that it helps.

I am in the UK (I used to work for the NHS for 11 years until I got PHPT and was so ill I had to give up my job).

I had PHPT for at least 6 years before I found out what I had.  It mainly affects postmenopausal women and I thought the start of my symptoms were menopausal as some were similar.  Long story short, even though my Rheumatologist said I was "really too young", she diagnosed me with Polymyalgia Rheumatica and gave me steroids for a year (Prednisolone).  My GP gave me Calcichew and Vit D, and Omeprazole to cover the Pred.

But I eventually found out I had high calcium and high PTH and that I had PHPT - I had been diagnosed, and was being treated for, the wrong disease!  Being on the steroids was terrible - it masked the pain a bit but had horrible side-effects including the awful weight gain.  When my GP said she didn't know why my calcium was high, I researched it on the web.  I was aware of PHPT from working in the surgery (I was an administrator), but didn't realise at that time that's what I had.

Long story short I sent my results to the famous clinic in Tampa who confirmed that I had PHPT and 3 weeks later I went to have my adenoma removed.

The staff and the treatment and place were absolutely fantastic and absolutely first class.  Everything that took place was just as it states on their website so there were no shocks or surprises, and the whole process went like clockwork.

My operation was carried out with a local anaesthetic in less than 20-30 mins.  I have to say that I was one of the 20% of people for whom my tumour was NOT in the usual place behind the thyroid gland.  It was buried deep in my thymus gland and had to be bisected.  This tumour did NOT show up on their Sestamibi scan but their Sestamibi scans in not showing where the tumour is, can show where the tumour IS NOT i.e. it will show whether there is one in the chest near the heart and the thymus gland is at the top of the chest.  They knew roughly where it would be and the gamma probe confirmed it.

The simple truth is that they are state-of-the-art, do only this operation and have perfected it over many years and are very experienced and I know with absolute certainty that the tumour in my thymus (the size of an olive) would not have been found in the UK and I refused an NHS scan and trusted Dr Norman at the Tampa Clinic to find where it was. It was the BEST thing I have ever done, I had been very sick for years and the sadly wrong diagnosis and treatment I got over here made my osteopenia even worse (when you have a parathyroid tumour, taking calcium and Vit D doesn't help - it just makes things much worse which it did in my case and could have caused a stroke or heart attack. In fact I did develop heart palpitations before going to Tampa. 

Bottom line - sadly the NHS here and the private consultants (usually the same ones doing the NHS operations) - are not yet as advanced and far forward with parathyroid operations (no disrespect to them) as the clinic in Tampa. Over here they still work the way they were taught at medical school years ago and don't truly understand how this disease works.  A lot of them think a low Vit D causes high calcium when in fact this is impossible - the body suppresses Vitamin D in the presence of a tumour by way of a protective measure and patients are often given big doses of Vit D which just makes you feel worse.

The Tampa clinic also have the benefit of the gamma probe which they invented which also helps to locate the tumours as it makes a loud buzzing noise when the probe is near a tumour.

Even doing the operation privately here is not the same as Tampa.  I am aware that the surgeon in my area has tried to purchase a gamma probe but the NHS refused funding.   The Tampa clinic has a virtual 100% success rate and the operation, not done with a General Anaesthetic and with only a 1" cut, is so much less traumatic for the patients.  I left the clinic 1-2 hours later and was fine.  I did have quite a bit of bruising and some swelling but it wasn't painful I didn't need any painkillers and they give you an ice bag and calcium to take with you which really helped.  Had my tumour been in the usual place behind the thyroid, there would have been less bruising.  I cannot recommend them highly enough.  I could go on but my info is long - sorry, but I feel so sorry for all of you who are still suffering especially when there is a cure in Tampa and the wait for an op is just a few weeks once diagnosed.  I really felt so ill by the time I got there, I had a headache and high BP on the day of my op, and now, 2.5 years later, I am soooo much better, not quite 100% but getting there (the steroids took even more calcium out of my bones and I had terrible bone pain that kept me awake at night, and all they really did was mask some of the pain, and since taking them I now have OA in my knees which I didn't have before I took them.  If I could turn the clock back I would not have taken them.

PHPT is also often mistaken for fibromyalgia as well as PMR so be sure to get the right diagnosis, high calcium and high PTH (although there are a small number of cases where it can be high normal and still mean you have a tumour).

One final thing otherwise this will be too long - although it does cost (about £6,000 ish) for the operation in Tampa, over here if you have it done privately it is about the same cost and it is NOT the same operation.  In Tampa there is no large cut, no exploration of your neck and no long hours spent on an operating table and there is a faster recovery after a short anaesthetic with no damage to the vocal cords (I know of someone whose vocal cord was damaged and they have to have ongoing treatment for it).

I hope that the skills and expertise in the Clinic in Tampa will one day be practised over here but unfortunately by the time that happens a lot of people will be very, very sick.   I can only tell you my experience and that I am now cured.  The damage to the body is caused not by how high the calcium actually is but how long you have had the disease.

Also it's not advisable to get venous sampling - the surgeons in Tampa say this is dangerous and it is of no help with the diagnosis.  Also the intraoperative testing of the PTH is of no value - this used to be done at one stage but it is now known that this is not helpful (and it takes about 45 mins while you are on the operating table).

The gamma probe used in the Tampa Clinic is linked to a computer which measures in real time EXACTLY how much PTH is being produced by all the parathyroid glands so the tumour is removed and the levels of the normal ones left behind can be verified.

All this info is very important to the health of the people suffering out there so I hope it won't be moderated to the point where it isn't shown.  The bottom line is you CANNOT live with a parathyroid tumour, it slowly destroys your whole body and makes you very sick.  At the end of the day you need an acurate diagnosis and first class and prompt treatment so you can start to heal.  I know it is quite expensive, but it will ultimately give you back your quality of life and save your life.

Regarding symptoms, I had daily headaches, nausea, it felt like my brain was frying like an egg, I used to fall asleep by midday (a classic symptom), at night I had 'brain zaps' - just as I was falling asleep it was like having a crisp bag popped right in my ear which woke me up) and I developed heart palpitations and tachycardia (fast heartrate) and ended up in A&E because my potassium level dropped to a crisis level).  Since my op, my headaches have gone, my bones have improved a lot and my blood levels are much better (one of the symptoms is high liver results and mine were high).  High blood pressure is another symptom and I also had a pain in my left nipple which has also gone since the surgery.  

Again sorry this is so long but I hope it helps - 3 weeks after my diagnosis from Tampa I had my op and started feeling better (and took the opportunity to have a 2-week holiday in Florida before coming home).

Oh just remembered - the other thing about the gamma probe and computer - by knowing exactly how much PTH the tumour was producing, they can work out how much calcium to give you after the op and for how long and also there are different types of calcium and the one they prescribe is calcium citrate which the body can easily absorb.

I just wish the best for all of you out there suffering, I know how terrible it is, I just hope this info helps.

tampapatient

 

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  • liz44044
    liz44044 rosemary25383

    Posted

    Rosemary  I am 4 months post op for HH repair and Nissen Fundoplication  while recovering i told dr that i have been having palpitations and its scary....They thought it is spasm in chest due to Hiatal Hernia repair.I had heart monitor for 24 hrs nothing appeared of course..so its dismissed.   I went to primary dr who did blood work my calciun level is 11 which is High he said...Now went to chief of endocrinology and she did ultrasound she said the thryroid gland has a growth in it which is benign...she did needle biopsy 3 yrs ago and assured me its ok...bone density was done and i have osteo pinea ...August she will do recheck of blood work ...said i do not have to come back for 3 years.....i am not comfortable with all this as i again am having occasional heart flutter or palpitations whatever it be its there and dont like that feeling.  my primary said because the biopsy was ok we will watch and go back in 3 years.   I am still recovering from the surgery and dont know what to do but I dont feel great, all the gerd issues are gone thankfully..  But my memory is not as sharp as it was, and fatigue is here, but again is it due to recovering ...ii just want to be me again....any advice/  i did read about Tampa and it all sounds good....there is a $2000.00 consult fee i dont know if i should wait it out or what   ...tell me what u think pls   liz
    • elainec33
      elainec33 liz44044

      Posted

      Sorry you are suffering like this.  I dont understand why she did a needle biopsy, I wonder if she does?????  An adenoma on one of the parathryoids I would have thought indicated an operation.  Or did she say it was a nodule.  You didnt say, assuming you had a pth test done, what that was.  It is all very difficult, I thought I had found a good private endocrinologist in London but I was wrong.  Is there any way, you could find a decent endocrine surgeon in your area and make an appointment directly.  I am on a private group on Facebook  Hyperparathyroid UK Action4Change and it seems that going to a surgeon direct is the most popular move because of the endocrinologists' lack of knowledge about parathryoidism.  I dont know what 11 is as that is the U.S. measurement for calcium.  If you want to join us, you would be most welcome and might find out a bit more information.  Just say Elaine sent you.
    • elainec33
      elainec33 liz44044

      Posted

      I just found this on the Tampa website

      To convert mg/dl to mmol/L: Multiply by 0.2495.  To convert mmol/L to mg/dl:  Divide by 0.2495. Thus a calcium 10.0 mg/dl = 2.495 mmol/L.  A calcium of 11.0 mg/dl = 2.75 mmol/L

      English version

      Normal calcium readings are:

      2.1 mmol per litre to 2.6 mmol per litre.

      So yes your calcium is high.  when it reaches 3.0 is very serious

    • elainec33
      elainec33 liz44044

      Posted

      Normal pth readings;

      normal range 1.48 to 7.63 or 1.6 - 6.9 in the UK, (for some reason the readings vary in the U.K.

      and around 15 - 65 in the US,

    • rosemary25383
      rosemary25383 liz44044

      Posted

      Hello Liz - I have been out all day and not long back and have just seen your message.   Poor you!  I am so sorry you have been through all that and that you feel so poorly.

      The one thing that is not very clear from your message is whether the growth is on your thyroid gland or whether it is an enlarged parathyroid gland,  I'm guessing that you are quite young.  Thyroid nodules are more common in people as they get older and many people get them (says Dr Norman) and they are usually harmless,

      However, the symptoms you describe sound suspiciously to me like the symptoms of parathyroid disease.  I am not a doctor but I had those symptoms.  Before my PHPT (parathyroid) symptoms increased, I used to get nausea and would vomit after eating things and there was no obvious reason why that was (in retrospect, that must have been the start of my high calcium levels because that's what it can do) and quite a lot of people get GERD with PHPT.

      I also had a fluttering feeling in my heart and the awful palpitations you describe and visited the doctors as a result who just said that there was no obvious problem (and implied it was my age!!  It is, however, a symptom of PHPT.  Your calcium level is high being 11 and if you get a PTH blood test done (parathyroid hormone) and it is high as well, the 2 high readings together mean it is very likely you have a parathyroid adenoma.

      Also you say you have osteopenia (thin bones) - well, that is a very common symptom of parathyroid disease.  If the calcium level in your blood is high and you have a high PTH too, the calcium is being leeched from your bones by the high PTH level and the bones are getting thinner and weaker as a result.  Parathyroid glands regulate the calcium levels in the blood within a tight range (bit like the workings of a car), and when there is a tumour the level of PTH spirals out of control.

      Parathyroid disease wreaks havoc with your memory and concentration because the central nervous system incuding the brain is affected by the levels of calcium, it needs just the right amount to work properly, not too much and not too little.  

      If I was in your shoes, I would get your PTH checked first of all and if it is also high, then there is definitely a problem although in a minority of cases a high normal result can still mean there is a problem.

      To me you sound like you may be in your 20s or 30s, I may be wrong, but if you do have a parathyroid adenoma, not having it removed means your bones will continue to lose calcium and eventually it will lead to osteoporosis.  If your doctor isn't very helpful, then it would be wise to change him/her and get a second opinion.

      Dr Norman in Tampa says that when doctors don't know what to do, they do NOTHING and waiting another 3 years - what !! - when you already know you have high calcium is going to make things worse.

      I know that Dr Norman's clinic does charge quite a lot of money to have your results analysed (I didn't have to go there to do that, they can do it by email/post if you send through your results) but they are a truly specialised centre and Dr Norman really knows what he is doing.  I have heard that if when you send your results to him and he checks them and finds that you likely don't have a parathyroid tumour, then I think the bill is less (unless things have changed recently).  You need to send a series of calcium levels and PTH blood test results and a copy of your bone scan etc and it takes them about a week to prepare a personal chart for you.

      ......I will send you this then continue in case the text gets lost, back in a minute............

       

    • rosemary25383
      rosemary25383

      Posted

      .......Some people think the consultation is expensive for Tampa but there is quite a lot of work involved in analysing people's results and creating a personal chart for every patient.  They also write to your doctor after surgery with all the info and pathology report and also send a colour life-size photo of the tumour(s) they remove to you and your doctor.

      The other good thing is that although the Tampa surgeons do not carry out thyroid surgery per se, if when they have a parathyroid patient they discover a problem with the patient's thyroid, then they fix it at the same same time and I think that is very good.   So, if you are able to pay to have all your results analysed, it really is worth it (and I do feel for those people who cannot).

      As you have already had surgical interventions, if it did transpire that you have a parathyroid adenoma, then if I were you I would go to somewhere experienced like the Tampa Clinic because you don't want to have a failed operation.  As I said in an earlier post, they have state-of-the-art technology and many, many years of expertise.  Also the operation is done under a local anaesthetic in usually less than 20 minutes with just a 1" scar and a quick recovery.  You normally leave the hospital in 1-2 hours later so there is no overnight stay (it would be extremely rare).

      I can speak from experience that the whole experience there is exactly as they say it is on their website, it is all true.  

      I think from your message you may be in one of the American States?  You may even be in Florida, NPC has a lot of patients from there - and very telling is the fact that a lot of doctors with parathyroid disease go there!

      I hope the above info helps you in some way.  It would be nice to know how you get on and what road you decide to take towards getting better.

      The very first step is of course to check your PTH to see if you do have a high chance of having a parathyroid tumour.  If not then your problems are due to something else but it's worth checking everything out and ruling out the parathyroid problem first.

      I hope you feel better soon from your current surgery.

      Kind regards.

      Rosemary

      p.s. my surgery at Tampa was so non-invasive that when I had my op, I only lost about 3ml of blood (that's about half a teaspoonful)!!

       

    • rosemary25383
      rosemary25383 Mommy7379

      Posted

      Mommy7379 - it was in December 2013.

      How long have you had parathyroid symptoms?  When do you think you might be able to have your surgery?

  • karole91362
    karole91362 rosemary25383

    Posted

    Dear Rosemary  -  I have just read your postings and cannot thank you enough for all this information.  I don't know whether you have read any of my postings but in case you haven't I will try and fill you in on my own experince.

    About 3/4 years ago I was having gall bladder problems and the blood tests I had done at my local surgery showed a raised calcium level. My GP immediately suspected PHPT and arranged for a 24hour urine test to be carried out  -  which confirmed her suspicions. She then relayed the information to the  endocrinology dept at my local hospital.  But she was told that as the level was only slight raised that she should just monitor the situation with regular blood tests and bone density scans.  At that time I was living in Cambridgeshire. 

    Last year I moved to Dorset and my new GP, when she received my medical records, immediately arranged for me to see an endocrinologist.  He sent to Cambridge for the results of scans and tests I had had done there.  Then he arranged for further blood tests here and another bone scan.  I told him the last bone scan had only been done just before I left Cambridge but he insisted on me having another because I had never had my forearm scanned (only my lower back and hip) which apparently is very necessary in the case of PHPT. He also said he would arrange for me to have scans and gave me a prescription for VIt D tablets Vit D tablets and told me he would arrange an appt for me to see the surgeon as surgery was necessary.

    Since then I have had an ultra sound scan and a sestamibi scan.  Also more blood tests.  When I saw my GP a couple of weeks ago she said the blood test results showed my calcium level to be in the 'normal' range. This confused me because ever since I was diagnosed with PHPT it has always been raised. But when I queeried it with her she did not really have an answer and told me I seemed to know more about the condition than she did  -  and that I should discuss it with the surgeon who I was due to see shortly.  That appointment was last week and when I saw him he told me not very much had shown up on the scans  -  that a nodule on my thyroid gland was possibly obscuring the malfunctioning parathyroid gland.  He then mentioned rwo options.  One was to do exploratory surgery but he wasn't keen on that as he may not find anything and it could cause damage.  I thanked him for telling me that  -  as I already knew (from things I have read on this forum) that this could happen. So he suggested we wait for 6 to 9 months until the tumour has grown and would be more visible on a scan.  And I did not receive a satisfactory answer re the normality of the calcium  -  he just said that it could fluctuate due to other factors.

    Through this forum I had already heard about Dr Norman and have been onto his website.  I had also mentioned him to my neice in Califirnia and said I was wondering whether I should go down that route  -  and it was cheaper than having it done by a Harley Street surgeon in London!

    Since reading your posting this morning I have emailed my niece and asked if she would be available to go to Florida with me if I decide on that choice.  What prompted me to do this was many things you mention.  I am constantly tired, I keep getting pains  -  mostly in my legs and mostly when I am laid down in bed.  I have also experienced heart palpitations and felt at times my brain was scrambled  -  plus having recently developed headaches ( I am not normally a headachey person)  and am reminded of this as I can just feel one coming on. Sometimes these symptoms aren't too bad but I realise that is when I have been for acupuncture treatment from a therapist friend who has been trying to help alleviate the tiredness.  But it is only like putting a band aid on things.

    What should I do now if I decide to go to Dr Norman?  Do I inform my GP and what test results do I need to get?  Your posting has really kicked me into realising just how serious this condition is  -  and how damaging were I to wait another 6-9months until the tumour has grown some more.  I also feel I should perhaps stop the Vit D tablets.

    It would be interesting to talk to you but I don't know if we can exchange phone nos etc on this forum  - or whether you would want to.  But I do thank you for all the very helpful information you have provided. 

    Best wishes, Karole

    • rosemary25383
      rosemary25383 karole91362

      Posted

      Dear Karole

      Thanks for your reply and I am very glad that you found the info helpful.  

      I would be more than happy to pass on any further info.  As it is not permitted to add email address on the forum, you could private message me and I can share more info with you.  

      Just have to go out now and will be back later.  Hopefully you will be able to private message me.

      Kindest regards.

      Rosemary

    • karole91362
      karole91362 rosemary25383

      Posted

      Hello again Rosemary.  Many thanks for getting back to me.

      Could you give me any advice on how to send a private message please.

      I managed to find a place on which i could receive messages but don't seem able to find how to send one.  Sorry about this. 

      Regards, Karole

  • karole91362
    karole91362 rosemary25383

    Posted

    Just read through what I wrote to you Rosemary  -  apologies for the typing errors!

     

    • rosemary25383
      rosemary25383 karole91362

      Posted

      Hello Karole - no worries.

      I have sent you a private message.  You should see an envelope under your name and should be able to access the info.  Let me know if you don't receive my private message - I have never sent one before - I have only just joined the site.

      Kind regards

      Rosemary

       

  • tana_33
    tana_33 rosemary25383

    Posted

    Hi I have been bery well operated in France, my scar is not any more visible and the recurrent nerve was monitored. The operation is free of charge except 200€ for the monitoring. My surgeon had  a huge experience in parathyroid and thyroid operations. I had a scintigraphy to diagnose the adenoma free of charge too but Florida must be nice to see.
    • rosemary25383
      rosemary25383 tana_33

      Posted

      Hello - I am pleased to hear that you had a successful operation in France - .when did you have your operation?  Is your calcium back in the normal range now?

      I didn't want a general anaesthetic with more risk of complications needing nerve monitoring, so I went to Tampa specifically to have the 20 minute mini surgery with just a local anaesthetic. My tumour wasn't in the usual place and the gamma probe there helped to find it.

      Yes, it was very pleasant to wake up on the 6th floor of Tampa General Hospital 20 minutes later, with a beautiful view of Tampa Bay with the sun shining.  I felt like I had just had a little nap, no nausea, no pain.

      I'm glad you had a successful operation.

       

    • tana_33
      tana_33 rosemary25383

      Posted

      Hi  the operation was in March 2015 but I am still trying to decrease the calcium perhaps it is why I am still reading forums. It was a specific operation because the nerve, the thyroid and the adenoma were stuck together, the adenoma was 4 cm large and the nerve was stuck on the 4 cm so half of the thyroid was taken off too and the calcium was so high (14.6 or 146 french norm or 3.6) and PTH 972 (norm 15-65) I was hospitalised before the operation to reduce calcium  I had no symptoma and I was working the day before the hospitalisation. It  has taken 10 months  to decrease the  PTH. Higher the calcium was, longer you need calcium I have understood
    • rosemary25383
      rosemary25383 tana_33

      Posted

      Hi Tana - sorry, I think I missed your message,  I would have replied sooner.

      Oh dear, the fact that your calcium is still high suggests that the operation you had in March 2015 has not cured you, the calcium and PTH should have gone back into the normal range by now.  Your calcium was very high, mine was 2.9 at its highest, not surprised you ended up in hospital.

      I wonder whether your surgeon checked all of your parathyroid glands? That was a large adenoma (mine was the size of an olive).  

      It is posible that the surgeon didn't check the opposite side of your thyroid for any parathyroid adenomas behind it.

      I don't understand your comment "higher the calcium was, longer you need calcium I have understood" - this is incorrect,

      When you have high calcium and high PTH, it means you have an adenoma so it sounds like they missed an adenoma and you stil have one that needs to be removed.

      Have you had a bone scan?  If you still have high calcium it is likely that you have either osteopenia or osteoporosis as calcium is removed from your bones by the high PTH level and ends up in your blood hence the high level of calcium and this causes damage in the body, some people have worse symptoms than others.

      You need to go back to your doctor to get this sorted out, living with a high calcium will cause damage to your body over time.  They would need to check the 2 parathyroid glands in the half of the thyroid you have left to see if there are any adenomas on them.  I know there is a drug (Cinacalcet) which can reduce calcium temporarily but to be cured you really need to have the bad gland/adenoma removed.

      Please let us know how you get on.  I really hope you can get help from your doctor to get this sorted out for you.  Living with high calcium will make you ill.   Take care.

      Kind regards

      Rosemary

    • tana_33
      tana_33 rosemary25383

      Posted

      Thanks for your long answer. Sorry I was not very clear. After the operation my calcium blood test was low then normal and the PTH had ecreased slowly in 10 months. That was very unusual for my doctors (I have read it takes 15 minutes for the PTH to go down  and they scheduled a second operation in June 2015 but they cancelled it when they saw that PTH was still decreasing. Now my PTH and calcium blood tests are normal but for that during one year I have taken 3g of calcum per day and now I decrease the calcium to 2 g per day and I try 1,5 g with vitD (unalpha) and magnesium. Two biopsy after the operation indicated it was a cancer I have read and heard that it is very rare, first case of my endocrino (he is around 60 years old). Scanner and IRM showed that I have lesions and brown tumor on the vertebral column. Happily I have  no cancer treatement or bone treatement and I live quite normally except for the calcium taken. Do you know if gamma probe and scintigraphy are te same ? In France it seems they use the scintingraphy to locate parathyroids. I have understood that if the calcium blood test was very high before the operation  you stay in hypocalcemia with the need to take calcium longer after the operation. 8 hours after the taking of calcium I can't swallow I am limit of cramps ... and 2 hours after I have pain in the members more and more and my gp said after it is the hospital. I have never tried I can buy calcium every where if I forget it. I call this my diabet of calcium

    • rosemary25383
      rosemary25383 tana_33

      Posted

      Hello Tana - Oh dear, I am sorry to now hear all of this and the fact that subsequent biopsies after your operation diagnosed cancer - poor you.

      It therefore transpires that your story is a lot more complicated than was suggested in your first message when you said you had your surgery done for free in France by "a surgeon with a huge experience in parathyroid and thyroid operations".

      Scintigraphy is just the method of scanning using a radioactive agent which shows up growths using a gamma camera to help locate tumours.

      The gamma probe was created and patented by Dr Norman in Tampa.  It connects to a machine that records PTH levels in real time when they do their operations.  It was created specifically for use in parathyroid surgery only  It is a "wand" about 10" long) which helps to locate parathyroid tumours (which when normal, are only the size of a grain of rice).  When the probe is positioned near a tumour in the neck, the machine linked to it makes a loud buzzing noise so it helps to locate them.  Furthermore Dr Norman uses the probe to measure the PTH level in all of the parathyroid glands in real time so he can remove the enlarged ones creating too much PTH (parathyroid hormone), and he can check the normal looking ones to make sure that they are producing a low level in the normal range.

      This is very important because by being able to record the exact level of PTH that is being produced, the surgeons in Tampa can work out from that how much calcium they need to give you after the operation.  They also recommend that people specifically take calcium citrate after operation because it is easily absorbed.

      Although the surgeons in Tampa only carry out parathyroid operations, if they find any thyroid problems at the time, they will fix those as well which I think is very good.

      I will try and unravel what you said in your latest message.

      1. It is not clear whether your surgery was thyroid surgery OR

      parathyroid surgery (the thyroid and parathyroid glands are different and have different functions in the body despite being near each other).

      2. Brown tumours are associated mainly with Primary Hyperparathyroidism but it could be that you have Secondary Hyperparathyroidism which is usually associated with kidney disease/stones.

      3. I think you are saying you had cancer of the thyroid?

      4. Whether you had a thyroid adenoma removed or a parathyroid adenoma removed, the 4 parathyroid glands are normally situated just behind the thyroid gland and as in the case of a friend of mine when she had a large thyroid goitre removed, some of her parathyroid glands were entangled and lost with removal of the thyroid gland. 

      I do not understand what you are saying the the last 4 lines of your message.

      I hope this information helps at least a bit.  I will give it some more thought and send you a bit more.

      Kind regards.

      Rosemary

    • rosemary25383
      rosemary25383

      Posted

      Hello again Tana

      If I were you, I would discuss things with your doctor and if you are not happy with the outcome, I don't know your situation but it might be worth contacting Dr Norman's centre to see if they can give you a definite diagnosis and advice on having further surgery,

      You may be a candidate to go there but they would have to analyse all your blood tests and scan results first (this means you just send them your details, you don't actually go there to do this).  From what I understand they charge less for the consultation fee if they find you are not eligible for operation for whatever reason.  As you are still suffering and do not appear to be cured, I think it would be worth it.

      Let us know how you get on when you visit your doctor.  What diagnosis did they actually give you when you had your operation?

      Kind regards.

      Rosemary

    • tana_33
      tana_33 rosemary25383

      Posted

      Hello Rosemary thanks to take time to discuss with me. You seem to know a lot about the technics. The diagnosis was parathyroid cancer (oncocytair type) The thyroid cancer is very frequent but not the parathyroid one. The problem is :  there is a nucear iode treatement for the thyroid cancer but not for the parathyroid one so it is difficult to prevent recidive. The parathyroid adenoma was stuck to the thyroid and the nerve because of the cancer part but I had nothing to the thyroid. Now I am in hypocalcemia and Dr Norman center is more specialised in hypercalcemia and hyper parathyroid. More they are very ironic about the  cancer part. In France, we are not used to the business part of the medical because thyroid and paratyroid operations are free of charge. Tne brown tumor is linked to the primary hyperparathyroidism. My cancer center is not used to paratyroid cancer and the radiologist sometime go back to secondary and forget in my case it is a primary one. I have just hat an appointement and they asked to reduce the calcium taking but I have many difficulties to do that. Thanks to have read me and try to understand my not so good english
    • tana_33
      tana_33

      Posted

      THe last lines were to explain I lack of calcium every day some hours after the taking. I have 12 hours of autonomy before needing badly of calcium

       

    • rosemary25383
      rosemary25383 tana_33

      Posted

      Hello Tana

      Oh dear, you were very unlucky then to have parathyroid cancer since Dr Norman says it is extremely rare so much so he barely mentions it on his website.  That's very unlucky.  I did wonder but thought well as it's so rarely maybe you had the thyroid cancer.

      That is very unfortunate, the pieces of the jigsaw are coming together now, you are right, now that the surgery appears to have made you hypOcalcaemic, there probably isn't much if anything Dr Norman can do.

      When patients become hypocalcaemic, all they can do is take calcium to keep the calcium level up.  When they did your operation the surgeon must have either taken out or inadvertently damaged your remaining parathyroid glands so that is why your calcium is low.   I wonder if you could email his office and ask his nurse if they he/they can give you some advice about that?   He advocates taking calcium citrate as I mentioned rather than other types of calcium as it is more readily absorbed and you clearly need the calcium.  It's a shame it seems to cause you problems.

      Maybe you could improve your levels with your diet by drinking lots of milk and eating things like broccoli which contains a lot of calcium, the body deals with calcium better when it's eaten in the diet.  Just a thought.

      By the way your English is pretty good - my French is a bit rusty, I originially trained as a bilingual secretary years ago  (speaking French and German with a little Spanish) but my French friend chats a bit in French sometimes so that helps.

      What do you think you will do next?  Please let us know how you get on.

      Kind regards.

      Rosemary

       

    • tana_33
      tana_33 rosemary25383

      Posted

      Hello Rosemary Thanks for your very comforting message. I have read again Dr Norman webite about the cancer. I did not remember there was the sentence : "these very high levels (PTH) often will take several months to come down to normal after a successful operation". I thought I have read it on the National Cancer Institute website, perhaps I don't remember well Nevermind it was my case but I don't think my doctors knew that, they learn with me. I have a strong medico speticism (and I know why) so I try to avoid any operation but it is not always possible. I tried to have advice nearly one year ago with my endocrinologist about the calcium taking but he was very unpleasant. My cancer center said perhaps it was because he did not know the illness...Thank you that helps...  I try to confirm that it is a good idea to reduce the calcium taking. As it is very difficult for me perhaps my corpse need it to repair the bones but it seems nobody really knows.

      I will have IRM an scanner for the vertebral column in december 2016 but I think I will not go. It is unuseful I have no pain and I certainly not do any operation on the vertebral colum if I can avoid it. I have to keep the PTH and calcium blood test for the cancer part(every 3 months then next in 6 months) My doctors are happy that I am in hypocalcemia it means the cancer is not back

      I like reading in english but writing is much more difficult. I chat in english when I travel but it is easier for me with people who are not american I have difficulties with the accent (from Texas especially). I try to listen TV in english to improve my understanding. Many films are from America

      Best regards

       

    • tana_33
      tana_33

      Posted

      End of the message : for the calcium diet it is not very easy as I am lactose intolerant but cheese is good in France. I did not know about brocolis more about sesame seed

       

    • liz44044
      liz44044 tana_33

      Posted

      Hi Tana   Your english is very good and we can understand every word you are trying to communicate....It is frustrating trying to figure it all out i can only imagine what your going through...I too am still trying to heal from the HH and Nissen Fundoplication, but that is all coming well.  But, it too opened pandora's box per se.  During recovery i was having heart palpitations and it concerned me alot.  Surgeon thought perhaps it was the chest muscle spam due to the Hernia repair...I waited awhile and then went to my Primary doctor who then ordered tests, one was the blood test which showed calcium level as High, here in the US 11 was the maxium on the scale to indicate H. Now I see endocrinologist who did the ultra sound and found growth in the one thryroid gland i have left. . 44 years ago there was a growth that i noticed on the right side of my throat and it was removed back then...Never having to take any meds to compensate as the left thryroid did that til now.  So results thus far are high calcium and want me to repeat blood work in Aug. then i will go from there...they say wait 3 years and come back..I dont think that is what i will do for sure....I do have osteopiniea for the last year and didnt know why thought it was old age setting in as i am 65 years old.  But now its all making sense....osteopinea, i too am concerned from what i read this h calcium produces acid in the stomach...well the gastro dr never saw anyone with the amount of acid i had in my stomach....i am beginning to think that ties in to this all...now i have had a slight tremor for a couple of years in my neck...i thought perhaps due to when i feel stressed its worse...so dr says its involuntary but i never addressed it yet ..i have to prioritize all this that is happening to my body suddenly....So all we can do is have patience, believe in our dr or follow your instincts but dont let it go...you need to be your own detective if you value y

    • liz44044
      liz44044

      Posted

      cont.   if you value your life....Good Luck to you and keep in touch and May God Bless and Keep You Safe.....By the way we loved visiting your beautiful country a few years ago....Absolutely lovely and the French people were very cordial to us.....Love your outdoor cafes that we would stop and have tea and a pastry.....yum!   liz
    • tana_33
      tana_33 liz44044

      Posted

      Hi Liz thank you for your nice message. You are welcome if you comme in France. Even after one year post operation I am not sure what I have improved. One reason is that I don't know how long I have been sick before, they speak about 3 or 4 years but I think it is much longer and the other reason is  many other events have changed in my life (divorce, move...). My calcium test had gone from above 14 before the operation to 8 or 9 after (I was out of Dr Norman diagram and much more out for the PTH). It seems to me the gain of the operation is : my brain go faster, less losses of memory, less depression, less and less headaches, (it was becoming a real problem before the operation 2 days per week) I had acid problem before but I still have it (I hope it will improve for you) I was coughing a lot in the night and I was sleeping in a sitting position but it had disappeared before the operation (I think my adenoma was very big and put pressure on the trachea). But now i have bone pain and anxiety due to hypocalcemia.  I am not sure the importance of symptomas are linked to the calcium level. I swam one kilometer before the appointement and  my surgeon said to me you should have been in coma but as the calcium had increased very slowly I had less symptomas. It is more the variation of calcium. Certainly it is better for my vertebral coulum to have been operated but before the operation I was doing aikido but now i have gone to Tai chi because of the brown tumor (better not to know). I think sports are good for the health and more outdoor sports even if sometimes I need calcium and pain killing to dot them. Best wishes Liz

    • rosemary25383
      rosemary25383 tana_33

      Posted

      Bonsoir Tana - et je vous remercie aussi.

      I am sorry that your situation is so complicated and that the endocrinologist you saw a year ago was unkind and unhelpful, in that case he should not be a doctor.

      I am so sorry you have a problem with your spine (colonne vertébrale).

      I can understand that your doctors are happy that your calcium is now low but I hope it is in the normal range because calcium that is too low is not good either which is obviously why you need to take calcium. 

      I found this on the website for you, how to increase your calcium if you are lactose intolerant - I hope it is helpful.10 ways to get more calcium if you are Lactose intolerant

      Avoid soft drinks. Consuming large quantities of soda raises phosphate levels in the blood, which can leach calcium from your bones and prevent the absorption of new calcium.

      Get enough vitamin D. Calcium is absorbed by the body and used only when there is enough vitamin D in your system. A balanced diet should provide an adequate supply of vitamin D from sources such as eggs and fortified orange juice. Don't forget that sunlight also helps the body naturally absorb vitamin D; just 5 to 10 minutes of sun exposure per day should help you reach your daily intake of vitamin D.

      Eat your beans. Beans are high in calcium as well as protein. Baked beans are particularly high in calcium. One cup of baked beans has 154 mg of calcium (remember the target is 1,200 mg/day).

      Try canned salmon. Three ounces of canned salmon contain 181 mg of calcium. Salmon also is an excellent source of omega-3 fatty acids.

      Choose calcium-fortified foods. Many foods are now calcium-fortified. You can find calcium-fortified soy milk, almond milk, rice milk, orange juice, cranberry juice, breakfast cereals, and breakfast bars at almost every grocery store. An 8-oz glass of calcium-fortified orange juice provides about 300 mg of calcium, which is about the same as a single serving of milk. One cup of calcium-fortified soy milk has nearly 300 mg of calcium and can be eaten with calcium-fortified cereal, combining two great sources of calcium in one meal.

      Include oatmeal in more than just breakfast. One cup of oatmeal not only provides 100 to 150 mg of calcium, it is also a versatile add-in to many other foods and can be used to goose up the calcium quotient in your breakfast cereal, added to yogurt, or even mixed in with your favorite baking recipes.

      Eat your veggies. Spinach, broccoli, and other dark green leafy vegetables are especially high in calcium, providing about 100 mg of calcium per serving. In addition to just making an effort to eat your greens, you can also try substituting raw spinach for iceberg lettuce on your sandwiches and in your salads.

      Go nuts. Almonds and Brazil nuts contain about 100 mg of calcium per serving and are recommended snacks for people on low carb diets.

      Start your day with a soy latte. A 16-oz latte provides almost half your daily calcium. If you’re lactose intolerant, you can get your latte made with soy instead of regular milk.

      Take an over-the-counter calcium supplement. You can add an over-the-counter calcium supplement like Os-Cal or even Tums to your daily routine if you still can’t get enough calcium. However, it is important to remember that just because a single Tums tablet has 200 mg of calcium doesn’t mean you can take 5 a day to meet your recommended daily allowance. Tums are primarily an antacid, not a calcium supplement, so it can have a detrimental effect on your digestive system if taken long-term.

      If you don't get your bone scan done in December you will not know if your bones are improving so it might be a good idea to go.

      Yes American English is quite different I'm not surprised you find it harder but you do very well.

      Hope the above helps.  Let me know how you get on.

      Kind regards.   Rosemary

       

    • tana_33
      tana_33 rosemary25383

      Posted

      Thanks a lot Rosemary. I will work on your answer to improve my diet. Last year I was taking 3000 mg of calcium per day and vit D so it was too difficult to do it with diet. Now I have decreased to 1500 mg and vit D it is more possible. I find calcium fortified milk light in lactose. I try to avoid soy milk because I had breast adenomas many years ago (small local cancer again) and soy is not good in this case (similar to oestrogens). I take 3 or 4 tablets of calcium (carbonate) of 500 mg each per day, following if I do sports or not and Unalpha (vitD). Even with all this I lack of calcium in the evening.

      Best regards

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