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

Posted , 10 users are following.

elainec33
elainec33

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

 

6 likes, 98 replies

98 Replies

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  • Annie000
    Annie000 elainec33

    Posted

    Hi Rachel and Elaine

    Excuse me butting in, but Elaine mentioned MEN1 which was just what I was thinking, particularly if both parathyroid and pituitary glands are involved, Rachel.  Has your specialist mentioned this?

    I will add my own experiences in a separate post at the end of this page - wonder if anyone else has had similar?

    Annie x

  • Annie000
    Annie000 elainec33

    Posted

    Hi All again

    Has anyone else had similar experience to mine?  Elaine made me think of it as she mentioned MEN1 to Rachel but, to borrow her phrase, I would be laughed out of the surgery if I asked my GP if I had it!

    Ok so, working upwards(!):

    Uterine fibroids (gone with hysterectomy), ovarian cysts removed (one of which the surgeon described as "the size of a small baby"; liver cysts; gallbladder polyps (removed); breast fibroadenomas; large thyroid adenoma; 2 x parathyroid adenomas; nasal polyps(removed).  Osteopenia diagnosed when surgeon (broken wrist) noticed I had soft bones.  Mild chronic kidney disease.

    These are just the 'lumps' that I know of and to paraphrase the song, "I'm not half the [wo]man I used to be".  That seems quite a lot to me - 9 operations in 10 years but no-one in the medical profession seems to be at all perturbed about it nor inclined to investigate further.

    Has anyone else had so many adenomas/neoplasms/ etc - does this all seem quite normal and I'm worrying about nothing??

    Thanks all!

    Annie x

    Now no-one medically seems

    • elainec33
      elainec33 Annie000

      Posted

      Youve been through a lot. I dont know anything about MEN1 but I daresay someone on the Facebook Grup does Hyperparathyroid UK Action for Change   There is also another thng to read about  hemochromatosis and guess what? It's linked to calcium  Just another little gift in the form of ferritin!!!

      Elaine x

  • Annie000
    Annie000 elainec33

    Posted

    Hi Elaine

    Thanks for the reply, I don't think hemochromatosis is my problem as I certainly don't have weight loss as a symptom!

    Have just googled hyperparathyroid & weight gain and found an interesting article (don't think I can put the link) in which hyperparathyroid seems to be predominantly menopausal women (waves hand in air) but interestingly those of the cohort with higher calcium levels tended to be lower weight than the controls, whilst those with lower calcium levels (hand up again) were heavier.

    Very interesting to me personally as I have gained so much weight with little reason or ability to lose it!

    Anyway, just wanted to say hi and ask if you had heard anything yet??

    All the best

    Annie x

     

    • karen43213
      karen43213 Annie000

      Posted

      Hi Anne, sounds as though you & I have a few things in common, I put so many of my symptoms down to the menopause, now I realise it wis a lot more than that, yes to the polyps, cysts in breasts, also fibroids, the only thing slightly different is my calcium is high reached 3 twice but the average is 2.93, & I am gaining weight, I've never been big, always stayed at the same weight of 8 stone but am nearer 9 now, I've gained this weight  in the last 6 months & can't understand it as I have no appetite & often sick. It's a nightmare isn't it? 

      i have another appointment with my GP tomorrow & hoping they will refer me as an urgent case, I've been told it's going to be at least 6 months before they will operate 😩Hope you're ok in yourself & try not to worry, keep bugging the GP

      good luck

      karen xx

    • Annie000
      Annie000 karen43213

      Posted

      Hi Karen

      Thanks for the reply, how interesting - as you have had similar I can't help but wonder if they are then connected with the parathyroids ... hmmm... also the menopause symptoms which I suspect might not be!

      As to my weight, I've never been small but have put on over 3 stone in the last 3 years - hubby and I don't understand it as I eat far less than would warrant it - as you say, no appetite and nauseous.

      Just had call from GP surgery to make appointment as my  blood tests for C-RP (seems to be linked but must google more!) are pretty high - I nearly laughed down the phone, they've been up for several years - which I told GP when they did the tests last week - I don't know what he thinks discussing it with me is going to do!

      Anyway, hope you get on ok with your appointment - cry if you have to LOL!  It might make them ask for it to be fast-tracked!  As to the operation itself, I have to say I didn't find the op or the recovery too bad at all so don't dread it, see it as curing you!  Just make sure the hospital keep a close eye on your calcium levels immediately after the operation - I'm sure they'll be aware that needs doing.

      All the best

      Annie

    • elainec33
      elainec33 Annie000

      Posted

      Hi Annie and Karen,

      Havent been around much, lying on the bed and feeling ill most of the time.

      I am puzzled by you both gaining weight, for me it's the opposite, was around 9 stone but now around 8 stone 4 just in the last 14 weeks since this heart racing and really bad nausea started.  I was managing to eat breakfast and a sandwich at lunch time but evenings were the worst and I was up until last weekend, eating the same old thing each night, now I find my stomach cannot really stand anything cooked at all however, boring or bland, so have been trying to force down bits of toast and soup.  I read on the parathyroid site that calcium causes more stomach acid and I make too much of that already so am taking zantac twice a day, the over the counter ones so they are half strength.

      My calcium levels have never been that high, 2.68 being the highest and pth 8.06 but both fluctuate in the high end normal range.  I have advanced osteoporosis, was -3.6 a year ago but probably worse by now with my non existent diet.

      I am so irritated, only went down the private route because GP knows nothing about hyperparathyroidism and was me who saw the calcium was over the range not her.  Saw an endocrinologist mid June who is supposed to know what she is talking about, went to the hammersmith hospital and first thing I heard when I went back to see her in cambridge was that they had put the pth in the wrong bottle and lost the ntx bone marker.  So five months on and £2.600 down the you know where I am still none the wiser.  I keep emailing the secretary who sounds very nice but works from home and I dont get any reply.  Once I waited 4 weeks, more time wasted, Endo apologised and said the secretary had been busy.  I saw her first week in October and had an ultrasound and sonographer said he thought there was something in the bottom of neck to the left and I would need to go to the nuclear medicine dept in addenbrookes.  Six weeks wait so I went privately on the 12th of this month, but nobody to give me any report and another £577.  Said the report would take about 10 days.

      Emailed secretary last week, no reply, emailed her again two days ago, nothing, re-sent email yesterday morning "in case she hadnt received it" yesterday afternoon get this

      "Hi Elaine

      Sorry for the delay and I will reply more fully but I am snowed under at the moment. I believe Dr Todd has the results and will probably want to see you. She is at the Spire next week but please let me know if you would like to see her because the clinic is overbooked so the Spire won't book it without my input.

      Hi Elaine

      Sorry for the delay and I will reply more fully but I am snowed under at the moment. I believe Dr Todd has the results and will probably want to see you. She is at the Spire next week but please let me know if you would like to see her because the clinic is overbooked so the Spire won't book it without my input"

      So I wrote back straight away, yes please make me an appointment, no reply.  I just spoke to the nuclear medicine dept they confirmed Dr has been sent the report, it was done on the 12th!! but they cannot give information over the phone.  I then phoned the spire hospital cambridge to see if I could possibly speak to her as she works there on a friday afternoons, and nuffield in the mornings.  Spoke to the nurse who looks after this endo, apparently not there today and why dont you phone the secretary!!!!!!!!!!!!!!!!!!! or email the doctor.  The email address is the secretary anyway, and the mobile only takes messages.  I am at my wits end now as  if there had been a positive result from the sestambi, surely the endo would have said make an appointment for elaine asap????  Sestamibis are not very reliable and the clinic in florida only does them just prior to an op.   Anyway, sorry to rant on but you know how it is.

      Anyway, I hope you both get somewhere with the GP's.

      Elaine xx

    • karen43213
      karen43213 elainec33

      Posted

      Oh Ealine!!! What a nightmare for you! I'm so sorry, you would have thought going private would make things a lot easier, I can't understand how they can mess you around like this. Look, they say they've found something on your sestmibi scan, so that's good, they didn't find anything on my ultra sound but did on the sestmibi but there was no rush to tell me, took 2 months on the NHS to see the consultant after all the scans, so don't give up hope, there doesn't seem to be any rush to get these things sorted & removed, I've been to GP today & they have given me anti sickness tablets, have you tried those? I haven't taken them yet & I force myself to eat, half a piece of toast mornings,  4 riveta lunch time, which is getting later as I forget to eat as I have no appetite, evenings are a lottery, today a packet of crisps & piece of bread, yesterday beans on toast & I have no idea why I put on weight! I used to walk the dog for about an hour every morning before work but I can't do that now & hardly exercise at all, so I've put it down to that  & my system just sluggish now. 

      Rant as much as you like, I know how frustrating it is for you, especially feeling so poorly, please don't give up, it's exhausting I know, we've both read Dr Norrmans site & I just wish we had someone like him to educate the medical profession in this country, thinking of you, keep your fluids up & look after yourself, I'm sure you'll get good news soon xxx

    • karen43213
      karen43213 Annie000

      Posted

      Hi Anne, thank you for the advise, as I said to Elaine, I've put the weight gain down to lack of exercise & the constipation, everything is sluggish including me! Saw GP today & they have agreed to contact the hospital to try & get me classed as urgent, best thing was I had to lie on the bed while he checked my tummy, after checking he walked off & I could not get up! As much as I tried I couldn't move ha! He did help me but I felt like a 90 year old. I now have to have an x Ray on my spine, I also have MGUS & they want to make sure it hasn't progressed into myeloma, so they're checking for tumours on the spine, in my heart I know it's the osteoporosis but it still scares you. I don't know what C-RP is but I hope it's nothing too serious. It's one thing after another isn't it! I didn't need to cry he was quite sympathetic lol.

      Take care & keep us updated, we do seem very similar so I'd be interested to know how you get on

      karen xx

    • elainec33
      elainec33 karen43213

      Posted

      Hi Karen,

      The sonographer said there is "something" on the ultrasound but I didnt get a chance to speak to him because it was late and the nurse was waiting to take blood before 5.00, so as far as I know nothing has been shown up on the sestamibi and that is what is worrying me if it hasnt.  I dont know.  I feel so ill tonight, feel hot but not got a temperature but really sick and am seriously wondering if I have pancreatitis as this has been going on now for 14 weeks, the nausea and heart racing, and really bad again this last week since Monday.  I dont have any pain in my stomach just feel uncomfortable in my ribs as if I am wearing tight bra but cant wear a bra now anyway.  I am drinking a fair bit of water, have two mugs of Pukka 3 ginger in the mornings which Fluffy recommended.  I was drinking ginger and green tea but the latter has caffeine in it so stopped that because of racing heart.  The only way I can get any sleep is by taking 1mg of Xanax which I hate doing as I will get addicted, but like Monday night felt so awful like tonight the xanax made no difference.  It is as if my whole body is raging with inflamed nerves and that gives me the shakes.   I have always suffered with IBS since I had massive doses of antibiotics in 1969 when I was given (unbeknown to me) unpasteurised milk in Italy and was really ill with brucellosis.  Now I am the opposite quite constipated but I am drinking a fair bit of water each day.   I get more anxious on fridays I think because of being alone and weekends are worse.  I wont be able to visit my dad on sunday feel too bad to do all that travelling on trains and bus.  I went last Sunday and didnt feel too bad.

      Anyway, I hope you have a decent weekend,

      xxx

    • Annie000
      Annie000 elainec33

      Posted

      Hi Karen and Elaine

      Sorry for the delay, I'm not getting much chance to check in here.

      Gosh, where to start??

      Karen, how did you get diagnosed with MGUS?  I have just checked the symptoms and that's exactly me - numbness & tingling in hands/feet/legs, and balance problems - will ask GP this evening about it but don't hold out much hope he'll be interested.  It's good that your GP is treating your case as urgent - do you know when you have your spine xray?

      I was shocked you had to wait so long to get your scan results, I was merrily assuming that no news meant they hadn't found anything on mine.  What I've done, seeing as how (laughably) the GP asked to see me to discuss my blood tests, is phoned the ENT secretary and asked her to send over the scan results to the surgery so I might get some useful info from him.  (just checked with GP - it's not there so have spoken AGAIN to ENT sec and she's going to check - why does nothing get done properly the FIRST time?!)

      CRP / C-reactive protein, is an inflammation marker in your blood - it is non-specific, so non-diagnostic but shows there is inflammation going on somewhere - possibly quite serious (cancer/cardio problems a distinct possibiltiy) but again, my GP is remarkably unconcerned.  It should be around 5 - mine has been around 18 for the last 2-3 years.

      Elaine, I hope your weekend wasn't too bad.  I'm so sorry you're getting nowhere - how frustrating to pay out so much and yet not get fast results and communication!  Why on earth arent' they making you an urgent appointment whether or not they can see anything?  You're a private patient!  It's getting just like the NHS!

       

      Anyhoo, Elaine, we too have so many similar symptoms - that uncomfortable feeling under the ribs, like bra is too tight - precisely the right description!  As is the racing pulse - at the pain clinic abortive visit the nurse mentioned it but that's as far as it went.

      I've just had a cancellation appointment for Thursday from the hospital for Rheumatology - frankly I've forgotten what aspect of all this they're supposed to be diagnosing, and really don't expect them to be bothered enough to do much for me.

      Do you find as I do, it's like trying to hem blancmange?  No-one really seems to know who is the correct person to diagnose this - ENT?  Endo?  Rheumatology?  I practically have my own parking space at the local hospital.

      Good luck with everything to both of you ladies and thank you both so much for your good wishes, which mean a lot.  I will check in again as soon as I can.

      Regards

      Annie

    • Annie000
      Annie000

      Posted

      Update...

      Yay!  Sestamibi shows "focal uptake in the right lower neck suggestive of a parathyroid adenoma"!

      Although, given that I've had so many ops in the last 10 years, the chronic pain may have 'settled' into being fibromyalgia, but at least now there's hope that removal of this (one or two??) affected gland will also mean removal of the pain I'm living with daily.  I know you all know what I mean!!

      Annie xx

    • karen43213
      karen43213 Annie000

      Posted

      Hi Anne, it all started in Feb when I had double vision, I had a brain scan & lots of blood tests where they found the high calcium & a protein that shouldn't be there which was a sign of MGUS, had loads more bloods done over a period of 3 months & was referred to the consultant for hyperparathyroidism, at the moment I have to have blood tests every 3 months for the protein & 2 months for the calcium, I've had all the scans & they found the adenoma in my neck, so I'm lucky from that point, dexa scan showed osteoporosis, I had an x Ray Monday on my spine so just have to wait 7 days for the results. I'm keeping my fingers crossed the surgeon will agree to treat me as urgent but I'm not hopeful to be honest. So this protein you have does sound very similar, hem blamange made me laugh, it is so true! It's like banging your head on the biggest wall, the phone calls I have made over the last 6 months just trying to chase up results & appointments is unbelievable, every time my GP says it's better if I do it, I know why now. 

      I hope olé you get some positive news soon, keep on fighting your corner keep us updated xx

    • karen43213
      karen43213

      Posted

      Bloody predictive text! I meant I hope You get some good news soon, how ole came out of that I don't know! Lol take care xx
    • karen43213
      karen43213 Annie000

      Posted

      Fabulous news!, I'm so pleased for you, sounds rediculous doesn't it, but at least you got through the biggest hurdle 'the diagnosis' 

      i hope it goes smoothly for you now, I can't wait until they cut my throat so I know exactly what you mean 😛 Great news, I hope Elaine hears very soon too xx

    • Annie000
      Annie000 karen43213

      Posted

      Hi Karen

      Thanks, you're right it's odd wanting them to find a growth / operate, but oh the hope of losing all these dreadful symptoms!!

      Interesting how they found your MGUS - not sure if it would have a similar link but I've been getting silent migraines (visual aura only) - heck, another one to add to the list!

      They found my osteopenia when I broke my wrist so perhaps it was a 'lucky break' after all!

      I do hope they fast-track your op, I don't know when I will even see the consultant yet, having got my results the sneaky way.  Even if they offered me an op tomorrow I would have to put it off til February due to work commitments - I'll just have to put up with the pain until then.  I may borrow your line "can't wait until they cut my throat' - I love it!

      All the best to you and to Elaine too

      Annie xx

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