Hyperparathyroidism - the "gift" that loves to keep on giving!!

Sounds like your Dr is about as useful as the rest of them in the U.K. when it comes to HPT.  My GP was encouraging me to chew on 15000mg of calcium per day because of my osteoporosis and she hadnt even noticed my calcium level was over the range.

You do sound in a sorry state, so sorry, makes you feel desperate doesnt it.  Fosomax I would not touch with a barge pole, the pharmaceutical company who produced it have had many law suits against them and were forced to add yet more side effects apart from what it does to your stomach, it hardens old bone and can cause hip fractures.  I dont know how you go about getting an appointment with the Norman clinic, I had thought of that myself but am a little nervous at my age.  I would imagine you would need all the latest calcium and pth blood tests plus a positive sestamibi scan and then email him and see what he thinks.  Otherwise it could be very costly going there just for an appointment to get his opinion.  Why dont you join our facebook group because there are 400 members who are in the process of having or have had operations, some of them are from Denmark and flown to Tampa, and some from the U.K. and they would have a better idea how to go about things or even find a decent surgeon in this country.  Just look for Hyperparathyroid UK Action for Change

Look forward to seeing you there,

regards, Elaine

When you refer to heart murmour, do you mean a prolapsed mitral valve (floppy mitral valve in layman's terms), I have that too!!

Hi Maria,

Are you actually resident in the U.K. I only ask as you mentioned an appointment with the Cleveland Clinic and if I were in the U.K. I wouldnt go looking at anywhere in the U.S. except for the Norman Clinic in Tampa.  When you say a bone density, do you mean a DEXA scan, that is what I had after I broke my wrist and to my shock showed advanced ostoeporosis which can be caused by HPT.  There is also a bone test on what they call the non dominant forearm which I understand proves that one has HPT.  Did they just ask about calcium level and how high is it, and have you had an pth blood test done, they should be done together apparently.  My surgery doesnt do them or dont like to because of going off in the van!!!!!!   More like they dont want the expense.  Fosomax or any of the bisphosphonates I personally think are dreadful.  YOu didnt say if you actually had osteoporosis and I do know some unknowledgeable doctors prescribe that for HPT.  It would be much easier if you were to join the FB group to speak more freely as this forum moderate a lot of the stuff and you are not allowed to post links.  I have an excellent short one I found last night about the sestamibi showing all the different places these adenoma can hide in shown by dr norman.  I am a sestamibi yesterday it was done privately through the nhs but it seems all i got was a 3 week earlier appointment and nothing else just the usual 10 days wait for the findings (probably none) to be sent back to the endocrinologist who referred me.  I am quite angry dont know what they are going to charge for this and I have already wasted £2000 since mid June on being messed about because the gp surgery is no use.

Elaine

I meant I found a short video narrated by dr norman. Elaine

Oh dear poor you, such a lot to contend with.  You know there is a parathyroid group on FB for the U.S., also another one that is affiliated to the Norman Clinic and another called Parathyroid Peeps the latter is three young women from California I think it was who suffered horribly with this disease and  who formed an FB group and are in close contact with the norman clinic, they write blogs and will answer any questions.  I am waiting on my sestamibi results which I am sure will be negative anyway.  Life is a bit difficult for me because I am on my own and have a 99 year old dad to consider.  I also had a frozen shoulder about 15 years ago, and was hell.  My weight has also dropped a lot down to 118 pounds on a good day!!  I am nervous about weighing myself any more. Most people with hyperparathyroidism complain about putting on weight, trust me to be different.  I truly hope you get the help you need.  I know Ohio is a long way from Florida but better than being in the U.K.

Take care, Elaine

Sry you have alot on your plate also. My parents died and so did my twin brother from heart problems. I feel bloated alot dont know if you have that problems. YES have to agree with you about being in ohio instead of U.K. the doctors around here arent much better, or I would already be feeling better. I am glad to know that other people have this problem for a while there I thought it was me lol  Marie

My so called murmour was picked up by accident, just after my husband died (I had a three year old daughter at the time) and so I freaked out a bit.  A prolapsed mitral valve is where the flap doesnt close properly over the valve and so you can get a flowing back of the blood.  This is okay provided there is no bacteria in the blood otherwise it will get stuck inside the flap, so for example if I ever had a pustular throat or a tooth out, or any operation I guess, I would have to go on antibiotics to prevent any infection.  My heart has always raced a bit now and again being a slightly anxious person, but nothing like it started doing 11 weeks ago, that was horrendous, non stop day after day so couldnt sleep, GP was useless too, although they did do an ECG but that showed nothing.  The nausea was even worse and why I hve lost so much weight so am not bloated.  The endocrinologist thought maybe it was to do with the thyroid but I had blood tests and it wasnt.  Rapid heart beat apparently is a sign of HPT.  After four weeks of it and no sleep at all (I would perhaps doze off around 1 in the morning and then be wide awake at 3.00 a.m. with the heart feeling it was doing somersaults.  Anyway, I resorted to taking a xanax at night as late as possible, around 11.30 which usually gets me through until about 6.30 in the morning which I am so grateful for.  About mid afternoon I can feel it a bit and by the evening it gets a bit faster and I begin to feel very hot.  I try to keep a bit occupied during the day to keep my mind off it but can feel it in my feet, like a fizzing sensation.  I dont know what the answer is going to be.   I think they would probably give beta blockers here but they can make you feel as if you are dragging a ball and chain around your ankle apparently, and in any case I get slight asthma and you arent supposed to take them with that.  I certainly did not want to start taking xanax as I dont want to get addicted to benzodiazopines, had that after my husband died when little was known about the effects of them 30 years ago, (that was when I lived in Australia) and was hell getting off them once I came back to the u.k.  but I used to take them during the day so was a lot worse than just one at night.

Elaine

Hi Rachel, 

Sorry to hear you are suffering.  If I asked for a tests for Cushings I would be laughed out of the surgery.  This is usually done I believe by an endocrinologist after many tests on cortisol level and 24 hour urine tests.  My friend has Cushings,  she was having a CT scan of her bowel and the operator quite by accident found a fairly large mass on one of her adrenal glands.  So she has been having weeks of tablets and the rescue tablet with it to combat the nausea it causes.  Until they bring her cortisol level down to at least 200 (it was 800) she cannot have the mass along with the adrenal gland removed.  She had no symptoms except she couldnt understand her weight gain and round face, probably had this mass growing for years and it was then producing too much cortisol.  Eventually I imagine she would have become quite ill.

The most important thing, I would imagine, as I am no expert, that is why I am encouraging people to join the FB group, is to have a calcium blood test along with the parathyroid blood test.  If they are both slightly over even and then fluctuate but in the high normal range it would mean primary hyperparathyroidism, ie a growth on one of the parathyroid glands which is causing too much of the pth to be in the blood, thus causing calcium to be extracted from the bones and into the blood.  My GP surgery are pretty useless, make the excuse that the pth sample can go off in the van, etc. etc. so I had to go down the private route which has dragged on and on since mid June. Am now awaiting sestamibi scan results which I know in my heart is going to come back negative, so have no idea what to do next.  Some days I feel like I am dying and really don't want to carry on like this, can barely eat and all the time wondering what the hell is happening with my bones having advanced osteoporosis.    It depends what you say is normal calcium level, if it is in the high end normal then I dont think it is normal 2.1 - 2.6.  Mine has only got to 2.68 at one point same with pth, slightly over normal and then sits in high end normal.  When the calcium reaches 3.0 it is said to be quite dangerous.  Hopefully you can find a decent endocrinologist in your area.  Join the group and someone might be able to suggest a decent one, Hyperparathyroid UK Action for Change 

Elaine

 

Yes, the Endocrinologist asked for Cushing Syndrome tests because, with high PTH of 19.9 and High calcium of 2.89, the CT scan did not show a thing. Therefore the test.

I was just asking if people like me had Dexamethasone pill. My tests were ordered by the Endocrinologist and the calcium was 2.59 a day after taking the tablet. However, what is worrying is that the calcium was 2.89 just 5 days before that test. My GB thinks, I am cured.

I am searching for an answer. Did Dexamethasone pill affected the blood tests or really, my calcium just decided to become normal again?

My appointment with the Endocrinologist is for Feb 2016. So I called my surgery and talked to the manager and asked for a call appointment with another doctor. I will ask for calcium to be tested again. I am still having the same symptoms.

If a one pill Dexamethasone  (very dangerous drug) can cure, it should be given to all the sufferers.

The Endocrinologist thought about the Cushing Syndrome because I put on 12 kgs (>25 pounds) in 6 months.  Again, the test was negative, I am not sure what he is going to test next.

I have been seen in the endocrinology department because I have pituitary adenoma and raise LDL. So I see the Endocrinologist every 6 months and Lipid clinic every 6 months.

Sounds awful for you but the fact you say you have a pituitary adenoma I would have thought pointed to the problem because I believe this in turn would cause the adrenals to make more cortisol.  I presume you have had a cortisol test.  I personally have never heard of raised calcium and raised pth with Cushings but I am no expert of course.  There are some Cushings support groups on Facebook which might be able to help you with some of your questions but of course I am not allowed to post links here.  I do hope you get something sorted soon, February is far too long to wait, and why hasnt anything been done about the pituitary adenoma. Minimally-invasive endonasal endoscopic surgery for pituitary tumors have been done in the UK for some years now.  As for the CT scan, I presume you meant that was done to try and find a parathyroid adenoma??  In which case, just because the scan comes back negative doesnt mean to say there isnt one.  That is most people's dread and disappointment when going through a scan and comes back negative.  In Tampa at the famous parathyroid clinic, they just take blood test readings, ie calcium and pth rather than rely on scans.  I will ask around on the hpt group but gaining weight and those high blood readings of yours sounds like HPT.Have you had a vitamin D test.  That is another indication if it is low, but me being difficult and different, I just have slightly high pth and calcium which fluctuates back to high normal but normal Vitamin D!!   I feel so sorry for you, it must be a nightmare and I hope something will be diagnosed for you soon. Elaine

Yes, my vitamin D is low and I have been put on vitamin D in June.Again pituitary adenoma is smaller than 1mm and is located behind my eyes so that make it  very difficult to investigate. All my conditions are in the special case range. I have prolactinemia for over 20 years controlled by meds, but the tumour is very small and cannot be seen in a MRI. The prolactin is up and down  like a yoyo. Now, it so low that my GP is worrying more about low prolactin that my PTH.

 Apparently, some of the parathyroid can drop before birth and be in one’s chest.

I am so sorry, must be awful for you.  I have neve heard of prolactin but presumably this is being produced by the pituitary.  Low vitamin d and high calcium and pth is a definite sign of primary hyperparathryoidism.  Have you actually had a scan for that, trouble is as I mentioned before, even the sestamibi doesnt pick up the adenomas.  I know they can be found in the chest, one of the girls on the group had one there and one lady had one in the thymus.  There is a  short video done by Dr Norman where he demonstrates showing what he calls the box where these parathyroid adenomas can be found.  I would have thought trying to sort the pth problem out at least would make you feel better.  Elaine

Just wrote you a message but has been moderated so will just quote from the well known site you know the name

"If you have been told that you have low vitamin D then this page is for you. There are two reasons for having low vitamin D. One reason for low vitamin D is not serious and simply means you need to take some vitamin D pills. The second reason for a low vitamin D is much more serious (and less common) and may indicate that you have primary hyperparathyroidism and need an operation to remove a small parathyroid tumor. These folks should not be taking vitamin D until after the parathyroid operation. If you have low vitamin D, you must understand which of these two groups you are in.We will give a short synopsis of Vitamin D in the blood, and what Vitamin D does for our bodies... with some facts and take away points. If your doctor put you on high doses of vitamin D, then you must know why your vitamin D is low. If your doctor said the words "secondary hyperparathyroidism" to you and put you on high doses of vitamin D because your calcium is not normal then you need to read this page and watch the video. We will explain this graph so you are smart!"

Have sent  you a couple of private messages as comments are being blocked. E

Hi Rach, I don't pretend to know anything about 'cushings' but from what I understand high calcium & high PTH levels are always down to the parathyroid even if they don't find anything on a scan, surely your high levels are classic? I've just got back from seeing the surgeon & he said they could be hiding anywhere in your neck & chest, so I really would ask to see another GP & insist on more blood tests. I've been through what you are now a couple of years ago with a tumour in the womb, dismissed from the hospital, I eventually was referred to another hospital, where I was seen within 6 weeks & had the tumour removed, so keep on, it's so frustrating believe me I know, good luck xx

Very true what you are writing.  By the way was the tumour in the womb as a result of the hpt, I know there is something called MEN1 which is related to parathyroid, growths in all sorts of places including the womb.  Am now wondering what this "thing" is on my left ovary but odd that it is exactly the same size (walnut size) as a fibroid that was found 19 years ago but they said it was outside the womb.  Either is is sheer coincidence or the external and internal ultra sounds in those days wasnt so specific.  Anyway, Im glad they got rid of it for you.  Someone on the group on FB has an adenoma on the pituitary apparently as well as hpt.

xx

No I don't think so, I think I'm just falling apart generally lol, oh for a nice cold glass of wine but that would give me horrendous heartburn so may treat myself to ice cubes in my water this evening instead 😛 And a tot of gaviscon, just put myself on FB no idea what I'm doing though xx

I can see your name on FB, don't worry about not having any idea what you are doing, everyone goes through that.  The one thing that many people have done, myself included a few years back was I thought I was sending a private message to someone but it was on their profile for any of their friends to see.  My dear friend who passed away last year did that and it was absolutely hilarious but rather embarrassing for her as she was the founder of a well known animal charity. The hyperparathyroid group is a private group so you can have a good old moan about yourself, ask any questions you want and post links.  It has got me through some bad times. E x