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

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Good morning, I hope everyone is not feeling too wretched today.  There are many sad stories here and as you know this vile disease can strike at anyone from aged 13 to very elderly and left mainly because of the ignorance of GP's and even some endocrinologists, who like the term "you have mild hyperparathyroidism" when actually there is no such thing, you either have it or you don't.

A young woman had an article written in a national newspaper of the 7 years of hell she went through, only because she noticed that her blood calcium level was elevated.  This is how I found out too, so sadly we have to do our own investigating and get copies of blood tests from GP's otherwise, like mine, whatever the result "no further action".

Sallie has created a  closed Facebook group where many sufferers have joined and expressed how they feel and there are some happy endings where they have been operated on.  Her aim is to make the NHS aware of what i happening and has also created a petition because of the untold suffering of some people who feel totally abandoned and helpless.  She has devised a schedule with names of surgeons and findings.  This is most important as you can end up with a surgeon as one did, who removed lymph glands by mistake!!!

I urge you to join the group "Hyperparathyroid UK Action for Change"  you can say exactly how you feel ask questions, post links in fact do anything to help yourself and perhaps others.

At the moment, like Phil who did this earlier on here, we are also creating a symptoms list and again urge people to add anything they feel is as a result of pre op HPT.  We are also connected with the U.S. group who has direct access to the well known Norman parathryoidectomy clinic in Tampa, who are happy to answer questions.

This is the start of our list:

Depression

Chronic nausea

 weight loss as a consequence

 rapid heartbeat more or less constant

 feeling hot and uncomfortable when it's not hot

 a feeling like a tight corset around the bottom ribs which seems to get worse at night and if I can eat something usually have to stand up eating

unable to sleep for more than a couple of hours and only with a pill

 usual wake up 3.00 or 5.00 and then just stay awake getting more and more churned up

desperately fatigued but feeling wired up

 bone pain in knee joint and back, hands anywhere in fact

 osteoporosis

 mild panic attacks

 a feeling of total hopelessness and doom

 no interest in anything

 constantly anxious

 easily agitated

 irritable and impatient

 difficulty in tolerating noise even the radio playing softly

 stomach burning up with acidity

 burping even with still water

 no appetite at all

odd fads, going from healthy to unhealthy diet

 having to force oneself to try and eat something

 the thought of food and smells giving the shudders

 becoming almost phobic about eating particularly in the evening

 unable to face anything healthy, no fresh fruit or veg

 Trembling as if excited but definitely not!

Tinitis

 Ear popping

Kidney Stones

Sinus Problems

Loss of Hair

Jaw Pains

Loss of Emotions

Weight Gain

Short tempered

Difficulty swallowing

Dry flaky aged skin

Vision issues

Teeth issues

Constant UTI's

Constipation

Irritable bowel syndrome

Confusion

Seizures possibly Calcium deposits in brain giving epilectic symptoms

heartburn

pancreatitis

headaches

 

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  • Posted

    I had kidney stones and got my diagnosis very quickly. I was lucky and had very good doctors. Grateful for that. I cannot say if I had any other symptoms as I could put anxiety down to other things. I am now post op and praying that's the end of my calcium worries. Good luck to everyone facing these challenges. A great post. Very interesting.

    Angela

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    • Posted

      Hi Angela,

      Very glad you were sorted out so quickly particularly having kidney stones which can be agony I am told.  I and many of us would be envious of your surgery.  I am sure your surgery will be the end of it now and wish you all the best for the future.  Unfortuately I am unable to edit my discussion post but I forgot to mention that parathyroidism has now been linked with miscarriages, so it would seem necessary if not vital to have blood calcium checks done before starting a family.  A couple of our members sadly experienced this a few years back and are now realising it would have been the dreaded para most likely the cause.    I would be very interested to learn which surgeon you had.  Elaine

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    • Posted

      Dear Elaine. Oh gosh that is very sad to hear. It is so little understood it is such a shame. We need more funding and awareness quite obviously.

      I was lucky enough to have a fantastic renal surgeon who immediately checked my calcium and PTH levels then directed me to his colleague for the actual surgery. It was at the Norfolk and Norwich University Hospital and he was marvellous. I am not sure if I am allowed to name people on here.

      Thanks

      Angela

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  • Posted

    I want to cry everytime I read about this condition. I have 89% of the symptoms and I am tired waiting for the endrocino. My appointment is not before Feb 2016. I am seeing at the Endocrinologie clinic but it is so slow. I would like to join the facebook group, please direct me.

    R.

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    • Posted

      Hi Rachel

      so sorry you are suffering.  If you go onto facebook and search Hyperparathyroid UK Action for Change  you should find it and ask to join, if you can't find it look for me Elaine Cole, there are several with my name but my profile picture is of three cats.

      Elaine

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  • Posted

    Hi Elaine, thank you for starting this discussion you do start to feel nobody in the medical profession actually takes this seriously, the only thing my GP & consultant seems to care about is the damage its doing to my bones but so many of the symptoms apply to me, I originally was sent to my local hospital with double vision which they have said there was no connection but did blood tests 
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  • Posted

    Sorry posted before I had finished! Put it down to the confusion 😏 Bloods showed high calcium & worrying pth levels, they diagnosed me pretty quickly, 6 months later I still have no date for op, my referral from consultant seems to have gone missing even though I've had a letter to say I've been referred, my consultant has discharged me so is not interested & the surgical team say they haven't had a referral & will let me know when they hear. I really think they have no idea what this condition does to you on so many levels. It's good to talk to people who understand so thank you x I have also been diagnosed with MGUS with no specific cause, which I saw on dr Normans website can be linked 
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    • Posted

      Hi Karen,  that is absolutely appalling!!!!  They certainly have no idea what this disease does to you both physically and mentally.  Is there any chance you can get all your test results, your surgery are obliged to let you have copies even if they dont like it.  I have everything copied now as I dont trust anyone of them, they are so totally ignorant.  I am wondering if you could get all the evidence, then perhaps raise the money to see a decent endocrinologist privately and get them to refer you to a decent surgeon.  Unfortunately I have had to go down the private route completely because my surgery doesnt have a clue, wont do certain blood tests.  If your GP is concerned about your bones, has he ordered a DEXA scan for you.  I believe for sure you should have what they call a scan of the non dominant forearm which is a good indication of hyperparathyroidism, ie the damage done by osteoporosis.  I am not sure about this that is why you should join our group on FB as there is nothing that Sallie doesnt know about the disease having gone through 7 years of hell and diagnosing herself.  I posted up a newspaper article about her but they wont allow links on this particular forum.  I dont know much about MGUS but I do know it can be a symptom as stated on the Norman Clinic webpage  "Development of MGUS and abnormal blood protein levels"    Also another horrible side effect is MEN1, these are tumours that form on various organs.  Search on FB for Hyperparathyroid UK Action for Change.  Sallie is much better qualified to advise you.  I dont know what some of us would have done without her.

      Elaine

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    • Posted

      Dear Karen,

      It is the same here. Keep calling the doctors and pushing. The process is very slow.

      Rach

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    • Posted

      Morning Rach, I'm not sure what part of the country you're in but I honestly  know how you feel, I've got to the point I can't argue or fight my corner now, I just don't have the energy for it, I'm lucky I have a lovely supportive husband & he has the bit between his teeth now, he has been ringing the hospital daily, not getting far but at least he's trying & making a nuisance of himself, you never know they may sort it eventually! I know what you mean when you say it just makes me want to cry! I've certainly had tears 😕 I hope things improve for you, it does seem a rediculous time to wait x
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    • Posted

      It's great that you have a supportive husband, so many do not and get fed up, even resulted in divorces because they don't understand.  Unfortunately mine died 30 years ago when my daughter was 3. x
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  • Posted

    Morning Elaine I have had a dexa scan, my lumber spine is -3.2, femoral necks are -2.7 & -2.5, my arm is also -2.5, I am 53 so apparently it's quite bad for my age, they have given me alendronic acid tabs which I have taken twice because I felt I had to do something, they made me very sick & had a massive headache for 3 days following so I won't be taking them again, I have considered the private route, or rather my husband has, it's not just me this is affecting, but is it fair that people in our position should have to take out loans or use up hard earned savings to get treated? When I questioned my GP about the waiting times & the magic 18 weeks, I was told 'you don't have cancer' I cried then & gave up! I will definitely have a look on FB, I'm not actually on it but my husband is so I will take a look, thank you for your support x
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    • Posted

      Hi Karen,

      I am sorry to read this but glad you have at least had DEXA scans.  They never even bothered with my arm and it was only because I broke that wrist they bothered to send me for a DEXA scan.  Generally in the U.K. you dont get a scan until you have broken something, so in that regard I guess you could say it was fortunate you were given one.  My T scores are worse than yours but then I am 15 years your senior, but in saying that, at your age and if you get this wretched PTH sorted, there is every chance that your osteoporosis will be reversed, this has happened quite a lot.  I am registered with the National Osteoporosis Foundation (the U.S. version as the U.K. one ia about as "helpful" as the GP's here and all they want to do is for you to take the dreaded Fosomax (bisphosphonates like aka alendronic acid). Many there have have a reversal.  Regarding Fosomax, I am not surprised if made you ill, my GP was pushing over a prescription to me before even checking about my history of stomach inflammation.  Fortunately I had read up about it beforehand.  Merck the pharmaceutical company apparently have had so many law suits against them, that they were forced to add on yet another side effect, ie hip fracture.   Apparently this horrible stuff does not promote new bone growth, it just hardens old bone so one can be just standing doing absolutely nothing and the hip can snap.  My T scores are probably even worse now in the past 12 months.  I did everything I could to help myself, bought expensive specific supplements via the US.  I bought a book written by a specialist physio in osteoporosis, we dont have anyone like that in the U.K.  Her name is Sara Meeks and I learned how to make the bed, get in and out of bed, all sorts of things to prevent bending from the waist downwards which is how one can break a vertibrae.  She shows many exercises but now I am too tired to do them but am always careful.  I have four cats which is a handful but I made long wire handles for the litter trays, wire carry type things for their water bowls and I use grabbers for their bowls (very bad language when they slip as you can imagine).  I live on my own and I am terrified of breaking something so I am as careful as I can be.  All was going along okay until May this year when I noticed my blood calcium was over the range.  As the GP was trying to encourage me to chew 3000mg of calcium a day (those awful Adcal D3 things that are calcium carbonate) I said I was on supplements thank you and I didnt want more, wasnt until I got home and opened up my print offs that I noticed the calcium problem which she hadnt noticed either, although as per usual it had been written as "no further action".  I got in touch with the chiropractor in the U.S. where I had been buying the supplements from (he had been checking all my blood test results since the previous November and had made the comment, there is no PTH test) and he immediately said get a PTH test and advised me to stop taking the supplements and that is how it has dragged on since June when PTH was found to be over normal, not by much but never the less not right.  I havent got very far in these five months and spent £2000 so far which I cannot afford but I am sticking with the endocrinologist because one of her colleagues is the best HPT surgeon in the country.  So I am just waiting now for this sestambi and if nothing shows up, which apparently they do not always, then I dont know what I will do.  Something appeared on the ultrasound in my neck but I dont know what, just hoping it is an adenoma.  It is pretty awful when you have to pay and I dont have private medical insurance, I have even contacted one of these property equity companies as I cannot go on like this.  My dear old dad has told me to use his nursing home money but what if that runs out!!!   Please stay in touch x

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    • Posted

      Goodness you poor thing! It does seem you are having a complete nightmare, I have to say on the whole my GP has been pretty good, she basically diagnosed me before I was referred & did all the bloods &PTH levels over a period of about a month, so she was quite sure what was going on, all the scans have been done, they've found the adenoma and it all came to a halt, some. Good news today though, the surgeons secretary has rang my husband & said I should expect an appointment for a consultation with him in the next 2 or 3 weeks, so maybe all the phone calls have been worth it. I really hope you get sorted soon, I'm also a big cat lover, 2 lovely boys that both want to sit on my lap, which is lovely but I get so hot, 😛 They are lovely company though. Your poor dad must be worried too! I'll be keeping my fingers crossed for you & hope you hear something positive soon x
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    • Posted

      I am so pleased for you getting that call today.  Also very envious of you having a decent GP, it seems so unusual judging by all the comments made by other members even including rubbish endocrinologists. Yes the cats are good company, two are strays from Greece after a terrible holiday there.  They are scavengers though, they cant help it, so I had to get cat containment fencing erected so they cant get out and get into neighbours kitchens or worse at the bottom of the road is the river with two restaurants and having seen so much cruelty I dont trust even in this country.   They are very affectionate though.  Anyway, am getting sidetracked now.  Great news from you and hope you get that appointment soon. x
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    • Posted

      Just replied to you but says post is being moderated, goodness knows why, no links etc. maybe it was the mention of my cats.  Anyway, very very happy to learn of your news.x
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    • Posted

      Not everyone likes cats 😏 Thank you Elaine, husband is now looking on FB for group, should be interesting reading, really would like to find out more with the connection to MGUS, maybe a little more information will help when I get my appointment through, take care x
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    • Posted

      Hyperparathyroid UK Action for Change  hope he finds it, I told Sallie earlier on today that he/you might be joining us. x
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    • Posted

      Evidently they have no objection to cats, lol.  Dont know why it was blocked but having read again it could appear I was inferring the cats might be used on the restaurant menu.  Not at all, just worry about them being pests and  getting into the kitchens and then getting flung into the river!  Did your husband join the group last night? x
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    • Posted

      oh would you believe, just replied explaining any misunderstanding about the moderated comment which has now appeared and this one just now has been moderated.
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    • Posted

      lol, my son works for the RSPCA, certainly no cat cruelty please 😛 Yes he did but went for the US site by mistake but  he's got the right one this time so hopefully, if I don't fall asleep again, I'll take a look, hope you've had a good day, keep me updated on your progress at the hospital, yes I think I have been lucky with my GP, she is a trainee & I wonder if that's the reason she has been so thorough, she'll probably want to think of another profession by the time she's finished with me lol x
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    • Posted

      I think you are right about her being a trainee that has been my philosophy the old and so called experienced dont have a clue about this disease but the younger ones do.  It was a young locom that said to me oh not lets worry about the pth going off in the van (senior GP told me that was the reason they dont do it!!) and did another calcium test which was slightly raised again.  Wonderful that your son works for the RSPCA you must be very proud of him.  If he is fond of dragons and has the initial A, I think he is on!!  Actually I have felt rotten today despite taking a whole pill last night, it comes on  worse around mid afternoon feeling boiling hot and really nauseous.  I am getting myself in a state of nerves as well about tests next week also wondering how I am going to get home by bus and train and not come in contact with any pregnant ladies or young children, but what about my cats?????.  I just hope I dont have an allergic reaction to the dye.  I made myself laugh tonight, talking to myself saying here we go again, the nightly forcing down food trauma, let;s get it over with.  Take care xx
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    • Posted

      How strange you should say that! He has a bearded dragon which he dotes on lol, his name is Joe though so no A in the equation, I am incredibly proud of him! Sorry you're feeling so poorly, you really are suffering aren't you, I'm amazed your GP has come up with such a bizarre excuse for not sending tests! I have to say I didn't have any reaction to the dye, a slight taste in the mouth which lasted a couple of minutes if that & that was it, I was lucky as my husband came with me & drove so logistics of it all must be a worry for you, I know I stress over the most silly things lately but when the time comes it's not as bad as I imagine it's going to be, take each day as it comes & concentrate on the here & now, hopefully once you've had the scan things may speed up for you & they'll get you in for the op quickly, it sounds as though you should be treated as an urgent case with the amount of symptoms you have & being on your own cant be easy, please take care & stay safe xx
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    • Posted

      That's funny because a young guy from Wales named Andy has just joined so assumed he was your son.   No sign of Joe yet.   If you think my symptoms are bad, you should see some of them on the group, poor things with ignorant GP's, like "lets monitor your calcium in another six months", or "mild hyperparathyroidism"  one lady ended up in A and E today with her calcium being 3.0, its highly dangerous and you probably know one can become unconscious.  I hope mine doesnt go up that high, the highest its been is about 2.68 and fluctuates which confuses these gp's, same with pth and then it goes down. They dont realise that high end normal isnt normal.  My cats would not be a lot of good at rescuscitating me.  Night night xx
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    • Posted

      Hi Elaine hopefully I've got this right and you have your scan this week, just wanted to wish you luck, let us know how u get on xxx
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    • Posted

      That's really sweet of you, not until Thursday.  Am a nervous wreck as Tuesday is another MRI to look at the ovarian "thing".    

      I was very sorry to read the post from Phil yesterday, his poor wife who is on the forever waiting list and had her op cancelled has now gone into liver failure. Hope she will be okay.

      I havent seen any sign of Joe on FB.

      Take care xx

      P.S. it says to steer clear of pregnant women and young children after scan, wondering about my four cats.  Will not do any cuddling to be on the safe side!

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    • Posted

      Good luck for tomorrow hope it all goes ok & they find something! Sounds a stupid thing to say but you really do want an answer to how awful you feel, I've had my appointment through to see the surgeon for next wednesday, I'm just hoping I don't have to go on a long waiting list after. I think I've confused you, joe is my son but it's my husband Andy that's gone on to FB, he's joined the group but I've had a rubbishy few days & not really looked properly, I will do though, it's really odd how some days you really do feel absolutely awful, I can .sort of cope with the pains but other days you just don't have the energy to even make conversation! Really sad about Phils wife, how worrying for them, fingers crossed for your scan x
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    • Posted

      You are such a sweetie remembering my appointment again, thanks so much.   I'm so glad you are seeing the surgeon next wednesday and will be of course wishing you the very best for that appointment.

       Yesterday was the dreaded MRI, nearly wasnt as they were running about nearly two hours behind and I said I am sorry I know it's nobody's fault but I cant do this as I dont feel well and my friend has a child at school so I will have to cancel.  She said she would go away and see exactly how long and then came back and said if you dont mind going into another building there is a scanner there free now.  So we found the other scanner building.  My goodness, I think she said it was one of the original ones but still took good images, just as well as it was 40 minutes of World War II and it never even paused, not like the big new one in July.  I had some huge earphone type things the sort you see soldiers wearing firing from their tanks, lol, which were quite useless, anyway, I got through it and now await the dreaded white window envelope.  Tomorrow, oh in a turmoil as you can imagine, just hoping they do find something, it is going to be a long day and I believe they are doing a CT scan as well.  Right, trust me to get confused, thought it was your son joining but I do recall you saying your husband was at some point.  I know what you mean about making conversation.  A friend exhausted me this afternoon was exhausted.  Everything seems to get worse by the afternoon.  I can also cope with the pains, am used to that now have been for a few years and put it down to arthritis.

      Havent heard any more news about Phil's wife, just hope she will be alright.

      Take care,

      xx

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    • Posted

      Hi Karen,

      Well I got the scan done at midday and am still none the wiser.  I thought as it was a private appointment I would at least be speaking to a doctor and get some answers but it seems whatever it is I have to pay will purely be because they fitted me in three weeks earlier and so have to wait 10 days now for results.  Was explaining to Annie earlier on that I felt very negative last night, more so, as I feel they wont find anything, and then I read a post before I went to bed where one of the woman had the same thing as me, I believe she is suffering more than me, apart from the nausea, and they couldnt find anything and she has to have venous sampling, as do two of the other girls.  I dont fancy that, would be quite difficult as if you dont get an appointment first thing, they tend to keep you in overnight to make sure you are clotting properly as apparently they put a canular in the femoral vein.  It sounds very complicated and not very pleasant.  If and when I hear anything I will let you know.

      Hope you had an okay day today,

      Elaine x

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    • Posted

      Hi Elaine

      how frustrating for you! Your stomach ends up in knots doesn't it, you would hope going private you would get to be seen as a priority & get sorted a lot quicker than this, from what I have read, if you have the high calcium & PTH it's always your parathyroid no matter what they find or not find on the scan, all this waiting around & uncertainty really doesn't help with the way you feel, you build yourself up & hope you get 'good news' then knocked straight back down, I really feel for you, I know exactly how frustrating it is & how it drags you down, feeling poorly is bad enough but not getting the help and understanding is even more depressing, I hope you get the answers you need so you can move on to the next stage xx

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    • Posted

      You should have seen me yesterday, I was like a walking zombie and worse because I assumed I would get some answers yesterday.  Both my calcium and PTH has gone over the normal limit, not by much and then they fluctuate.  The strange thing is that I think usually people have a low Vitamin D but mine was still around 100 back in September, although I had been off the supplements for only 10 days.  I am really annoyed about the so called appointment though and I daresay they will try and get a few hundred out of me, I wont refuse to pay but will write and ask how they actually justify what the amount is, if it is something ridiculous and what do they deem as a private appointment.

      I am going to try and visit my dad on sunday, its a long day, around 7 hour round trip by train and bus but I havent seen him for three weeks.  Up until the racing heart and nausea, 11 weeks ago, I was doing the trip twice a week as he is in a nursing home.  3 weeks ago when I made an all out effort, got to the station and found it was rail works with a squashed coach ride for an hour just to get to Cambridge to catch the train to Stevenage, so I only stayed with him an hour because I knew it was going to be the same going back home but fortunately coach was half empty back to my local station.

      I sort of play each day by ear.

      I hope you have a decent weekend, is going to be pouring with rain and windy I think.

      Take care,

      xx

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    • Posted

      Oh Elaine! I feel anxious for you! It's not an easy ride for you at all is it! I suppose I've been lucky as all my results have been classic primary hyperparathyroidism, calcium has reached 3 twice now, PTH high and vit D 'replete' but it does fluctuate like yours. I drink litres of water a day, so thirsty all the time but what goes in must come out, so up several times a night, can't remember the last time I slept more than a few hours, got the tremors today, knew I would as I went to the loo about 3 this morning & I was all over the place, my hips & legs seem to want to go in different directions lol. I'm putting so much emphasis on this appointment Wednesday & hoping & praying they do the pre op on the same day, I know I'm going to be devastated if they don't do it & just put me on a list, sorry, I'm being a moaner today 🙄 Keep me posted on your results, hopefully it won't take as long as they say & you'll get the answers you need, today is a day for staying in and keeping warm I think, have a good weekend xx
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