The science bit - here's where your parathyroid glands sit

Look – parathyroid glands

Friends, do you feel tired all the time, and is your body stiff and achy? Do parts of you sometimes get numb? Are you lethargic? Do you get lots of headaches, and have trouble sleeping? Do you find yourself forgetting things, and is it hard to concentrate? Have you noticed that life doesn’t seem such fun any more, and that you don’t look forward to doing things you usually enjoy? Do you feel anxious, or even paranoid, a lot of the time? Do the people closest to you say you’ve got a lot more grumpy and irritable lately? Have you started suffering from indigestion, when you never used to? Do you sometimes find it difficult to talk, because your tongue won’t form the syllables properly? Has your gag reflex got more sensitive? Have you got a persistent cough? Does your voice get so hoarse that you can’t sing the Tom Petty songs you’ve rehearsed with your band in San Antonio TX? (Oh, perhaps that’s just me.) Is your hair getting thinner on top? (Sorry, chaps – that one’s only for women.)

Then go along and ask your GP to test your calcium levels.

Here’s the science bit. We all have four parathyroid glands – they sit on the thyroid gland in our necks, and their job is to regulate the amount of calcium in our bodies through the production of parathyroid hormone (PTH). Normally they’re each the size of a grain of rice – but occasionally one will become tumorous, and go rogue. Far too much PTH is then produced, so that the other three glands shut down, and your calcium levels go haywire. Your body starts to leach calcium from your bones, in order to remedy what it thinks is a calcium deficiency. Not everyone who gets this has ALL the symptoms above; what they all do have is osteoporosis, but they won’t know they have, until they fall over and break something important. Even if they’re lucky and don’t fall over, they’re at risk of heart disease, cancer, stroke and kidney disease. The condition just wears your body down. It shortens your life.

What’s it called? Hyperparathyroidism
What’s the treatment? Surgical removal of the affected gland.
Is it a serious operation? Nope. Takes about 15 minutes and you can go home the same day.
Does it work? Yes, and you start feeling better almost straight away. The dormant glands wake up and start working properly.

I had the operation yesterday, and though I have a headache and my throat is very swollen, I already feel much better. In fact I have No Reason To Cry. And I’m eating lots of ice cream.

50 thoughts on “Hyperparathyroidism

  1. I suffer from most of those symptoms but I suspect in my case that’s just life (and the effects of chronic insomnia, hypochondria, general neurosis…). Poor you! But well done for getting it sorted and hurrah that the treatment has had such an immediate beneficial effect!

    • The thing is, bish, that most people haven’t heard of this and a GP may not pick it up – mine certainly didn’t when I first went to her saying I felt awful. It was only by accident I found out I had it. So having a test is worth a try.

      • My GP certainly wouldn’t. When I went to her several years ago with a kidney problem (my ‘diagnosis’), she claimed there was nothing wrong with my kidney, told me I had bad posture (I don’t) and advised Pilates.

        Six months of chronic pain later (not remotely relieved by Pilates), I finally managed to convince her to send me for an ultrasound, which showed up… a kidney problem.

        The ultrasound operator asked how long I had been experiencing the pain. When I told her that it had been about 18 months by that point, she said, “Blimey, you must have a very high pain threshold. Kidney pain is second only to the pain of childbirth.” To which I think I replied, “I don’t think I have got a particularly high pain threshold – I’ve been in a LOT of pain!”

        But in this case, I imagine my symptoms really are just life/stress-related. I tend to feel wonderful when I’m on holiday/have nothing to worry about!

      • Ha – it was an ultrasound for something completely different that revealed my rogue parathyroid gland – so, snap!

      • TreefrogDemon – I know this is a semi-old post, but I was wondering if you could tell me who did your procedure in San Antonio? That’s where I am, and have an Endo appointment for later this month.

      • I did comment on this site about my hyperparathyroid surgery – mine was done in Tacoma, WA. Again, I was first sent to an endocrinologist because I had symptoms of hypothroidism. Tests were normal and she did not think to test me for calcium levels or parathyroid levels. Finally my GP did the test and the results were very high for hyperparahtyroideism. The endocrinologist still kept insisting I didn’t have a parathyroid tumor and, until I insisted o the radioactive test, which showed a tumor, kept refusing to test further.

        The specialist was wrong – she kept saying my levels were just a “little” off – turned out they were 11 times normal.

        Hyperparathyroidism can cause a whole lot of problems.

        If you need further information and you think I could help, write again.


        (By the way, symptoms of hyperparathroidism mimic hypothroidism)

      • Sorry, Doug – I’ve only just seen this. I live in the UK and my surgery was done in Banbury, Oxfordshire.

    • I had the same experience. When I first started feeling “bad” and “old”, I went to a GP who tested my thyroid levels (but not my blood calcium or parathyroid levels). He declared that nothing was wrong with me and I just muddled through for the next 10 years until I started having excrutiating back pain. Went to another GP and he told me I had fractures in my vertebrae as a result of severe osteoporosis (I’m 54 years old). He fiddled around with osteoporosis drugs for over a year and finally I decided to go to a specialist. The osteoporosis specialist did a full battery of tests and scans on me including the parathyroid test. He diagnosed my problem on the first visit. I had never heard of a parathyroid and apparently neither had either of my previous GP’s (nor apparently did they have access to the internet or any medical journals). After surgery, my whole life has changed. I feel like myself again, I can sleep at night, have energy during the day and feel happiness again when doing things I used to truly enjoy. If you KNOW something just isn’t right, keep knocking on doors and demand that someone pay attention.

    • I knew something was wrong (Other than rheumatoid arthritis and a terrible spine) and thought that it could be a thyroid problem. Tests were normal. When I insisted on tests again six months later, my GP sent me to a specialist…my thyroid tests were again normal — she never thought to test my parathyroid, even though I had almost every single symptom. I kept insisting, and my GP decided to test for hyperparathyroidism — it was positive. (symptoms of HYPERparathyroidism and HYPOthyroidism are very similar) I’m scheduled for surgery for removel of the tumor that was found on one parathyroid gland and recovery is supposed to be really fast – surgeon said I will probably be completely recovered in three days.

      In short, we know our bodies better than anyone. Do your research and stand your ground. I wish I had years ago.

      • Me too! I found after the operation I started to feel better straight away – but it took several months before I felt I was really back to my old self again. Now I feel terrific! I hope your surgery goes well, Patricia.

    • I had a parathyroid tumor removed. Had all those symptoms including pseudogout that my rheumatologist did not recognize as one of the first symptoms of this type of tumor. The general practitioner was the one who found it and at first the endocrinologist insisted I didn’t have the tumor…I did.

  2. Aww. Get better soon tfd.

    I had some blood tests done a few months back, as I had quite a few of those symptoms, and had drastic unexplained weight loss even tho I was shovelling food down me neck all day, as I was constantly starving. Doc couldn’t work it out and put me on mood stablisers which seemed to work, but I’ve stopped em now, only coz I couldn’t be arsed going back for another script. I know that was silly but I’ve not had any adverse effects. I’m ok now, weight increased a bit and my moods are back to normal, ie. swinging from one extreme to the other ha ha! so don’t know what it was. Someone mentioned hyperthyroidwotsit, but coz I feel ok now, I don’t know if it was. Can it come and go?

      • I don’t know if they did one for calcium. I know they took a bucket load out – 3 big syringes worth. Mark came with me, and he nearly fainted – soft sod. I will keep an eye on things tho, coz like you say, Docs can miss stuff. I’ve had mis-diagnosed stuff happen before – one in particular could have been fatal, but was spotted just in time by total fluke. Don’t trusts medics me.

        Glad you feeling better so quickly anyway. Good to know these things do work.

  3. I’m so glad you’ve had the op and I hope everything continues to improve. Good to head up the symptoms.

    When I had my tonsils out c.1965 they promised me ice cream but I got fish fingers. C’est la vie.

    Shall expect a podcast of you singing your socks off, very shortly!

      • You went to the wrong hospitals. I had my tonsils out in 1964, the same year as Ringo had his done, and the ice cream flowed like ice cream.

        Glad the op went well tfd and hope you are fully recovered soonest.

  4. Hope you are soon right as rain.
    More effort by the NHS on GP diagnosis skills would probably be the single most effective investment they could make. My father in law was given Gaviscon for his throat cancer by his GP and died not long after. My GP gave me skin cream for my skin cancer, and only very reluctantly referred me to a clinic when I turned up in the surgery armed with photos off the Internet that were a carbon copy of what I had. My partner fought for years to get her version of tired all the time diagnosed – eventually found to be Sjogrens Syndrome.
    So, rant over, and delighted you’ve got your diagnosis and treatment at last. And can really have a Happy New Year!

    • Thanks, ghe…goodness, that Sjögren’s Syndrome sounds horrible. And those are dreadful examples of misdiagnosis. (To be fair, the G in GP stands for ‘General’)

      I was really trying to cheer everybody up. But that never works.

      • Don’t you worry, tfd – being given an opportunity to compare medical horror stories always cheers me up! And it is indeed very heartening to hear how successful your treatment has been. Now get that Ben & Jerry’s down ya!

      • I agree about the ‘G’ – which is why it is so important they refer folk for tests etc when not sure. My GP seems to regard it as his mission in life save the NHS money by never, ever, referring people for tests if he can possibly avoid it! So God help us now that GPs are taking over the NHS!

        Sorry to be a misery guts! **puts on Top Petty record and smiles**

      • Get well soon TFD!

        (I’m thinking of a good Tom Petty lyric to use as words of encouragement and I’m coming up blank. Help me out, Spillers!)

      • @ TFD, Re: No Reason To Cry – I had saw that, I was trying to think of others that I could work nonchalantly into a sentence.

      • In case some of you haven’t had time to listen, this song marries one of TP’s most beautiful lyrics with one of his most beautiful tunes:

        Overcome me, bitter-sweetness
        Put me under magic spell
        Overcome me, all my sadness
        Lead me on and wish me well

        There’s no reason to cry…
        It’s all right

        And it has slide guitar too!

      • Nice. I’m at work right now (Shhhh!) and access to YouTube, Myspace, Facebook and other sites is blocked. Will check it out later.

      • I also have sjorgren’s, R.A., Reynauds, etc. When you have one autoimmune disease you usually have more than one. And I had a parathyroid tumor (which has been removed) as well. Many physicians are too focused on ONE problem and miss the others.

    • I have Sjogren’s. The single most effective treatment by miles (and I’m still on it 10 years later) has been the 1000mg of flaxseed oil I take daily in gelcap form.
      My commiserations with your partner. And indeed everyone who is suffering health problems.

      • Sorry to hear you have it too, SR. And I don’t suppose the flaxseed oil is any thanks to the NHS. My partner (glasshalffull, thank goodness) swears by the anti malarial Plaquenil.

      • I’ve just been started on anti-malarials and am hopeful (hadn’t seen a rheumatologist for several years which is why). My ophthalmologist put me on the flaxseed pronto at diagnosis and have gone from severe dry eyes to normal. My treatment has not been good on the whole as I’ve reacted to most everything they’ve tried. Best wishes to GHF.

  5. Goodness, reading the above comments makes me glad I live in Germany (for a change)! We rarely go to the GP unless we need a sick note for work…there are specialist doctors all over the place, and in most cases you don’t even need a referral…

    Really hope this surgery has sorted your problems, tfd!

    • Ha! I would never keep one of those medical dictionary thingies in the house, for that very reason – I would always think I had all the diseases. Now, of course, we have Google, so we don’t need them. I did in fact watch the same operation I’ve just had on YouTube once. But I rather wish I hadn’t.

      • I very stupidly watched a Caesarian on TV, having had one unexpectedly. Now I know why I didn’t feel very good afterwards!!

  6. wishing you a speedy return to health! I’ve just got a broken thyroid, at least it’s easy to treat, hope you’re soon full of energy and ice cream 🙂

    • Broken thyroid? Eek! What did you do to break it?

      Time for more ibuprofen and chewable calcium, and then to devise a strategy that will let me stay up till at least, ooh, 10.04…Ice cream may be needed.

      • was born into the wrong family I think, seems to be a genetic thing. Never mind, worse things happen at sea.

  7. So glad you’re on the road to recovery. Very saddening to read of the problems of others.

    Watched my mother have the life removed from her by MS over 22 gruelling years. Doctors missed its onset and mis-diagnosed her for 30 months – blaming overwork and stress, although she guessed correctly after 12. Doctors often miss the obvious stuff they should recognise straight away due to daft prejudices. So, it pays to be vigilant.

    The godfather of my daughter was diagnosed with a brain tumour last month. The first doctor he saw told him to “stop playing video games and get some proper exercise”. Yes he’s an overweight, though loveable slob, but he was suffering from memory loss, temporary blindness, crippling headaches… At Ms Fuel’s insistance he went to an optician, who checked the pressure behind his eyes and immediately sent him to the hospital for a brain scan. He goes into hospital this week to have the tumour operated on/removed. He’s not yet twenty. Apparently, the signs are that he’ll make a full recovery, but there’s a 1 in 8 chance of it being worse than it appears.

    Look after yourselves and like ghe and wilemena don’t passively accept what those docs tell you.

  8. Hi tfd, so sorry to hear you’ve not been well, but very glad to hear that the op provides a real remedy and that you’re on the road to recovery. It’s really interesting to read about the condition – I haven’t heard about it before, but will bear it in mind for friends and family,

    It seems that autoimmune disease must be more common than I thought judging by the replies you’ve received above! I was diagnosed with lupus sle after 30 years of asking GPs what was wrong with me, and have most of the symptoms you describe (had to resist a moment’s hypochondria there) and raynaud’s and sjogren’s syndromes. Fortunately (in the circumstances) I have never been good at sport, so no change there, and am more inclined to thinking than acting so can cope with (ok, enjoy) being a couch potato when necessary.

    And hi SpottedRichard and glassarfemptee- I was really interested to read your comments about the flaxseed oil. I am tolerably managing the dry eyes, but recently have dry mouth too, which I’m finding grim – do you know whether it works for that too? I guess I’ve been very bad in a previous, or maybe it’s my own fault for dropping out of the rheumatologist’s line of sight and giving up the plaquenil et al because of the side effects. Anyway, I will be off to the pharmacy tomorrow to give it a whirl!

    • Sorry, it’s amnesiac here, but am having trouble with my settings here and on the grauniad, aggravated by not being able to remember a password….

  9. I just recently had my parathyroids removed after having been misdiagnosed for over ten years. Thank God I finally went to a specialist who found the problem with a simple blood test and sent me to a surgeon. Symptoms fixed include: fatigue, bone pain, inability to focus on tasks, insomnia, irritabilitiy, no stamina (feeling old) and general lack of enjoyment of things I used to like to do. The osteoporosis can’t be completely reversed, but thank goodness there are treatments and the damage has been stopped. My sister had this same disease and had recurrent kidney stones as a result of hers. Bottom line is don’t stop asking or searching for an answer until someone gives you a diagnosis.

    • Hi Janet: thanks for your comment, and I’m so glad you’re feeling better! The surgeon who removed my parathyroid gland told me that a faulty gland affects all the organs in the body and gradually wears them down, so people with hyperparathyroidism don’t live as long as they should…We have been lucky but I wonder how many others out there have been misdiagnosed or simply fobbed off by GPs who’ve never heard of the condition?

      (PS: my hair is growing back really well!)

  10. Did your voice hoarseness and gagging sensation improve? I was originally diagnosed in 2009 and then the specialist disagreed. Now I am very symptomatic and have terrible osteopenia at the age of 42. They did find an adenoma and I am scheduled for surgical consultation in 3 weeks. The gagging and hoarsness are unbearable some days and my GP told me today, “unlikely to be caused by hyperparathyroidism”. I am wondering if I should consult with another specialist or wait 3 weeks.

  11. Anyone ever heard of getting a rapid heartbeat from hyoerparathroidism? I’m waiting to see my family doctor who ordered my calcium levels and parathyroid hormone levels, both are elevated. I developed a fast heart rate 121 beats a minute at rest 3 years ago had oodles of tests no known cause. It is really affecting my life whenever i exert myself it goes very high and i get short of breath. I’m also extremely tired, fall asleep the minute i sit down. I had to have many many bone grafts in my mouth for implants and the bone disappeared as fast as they did them. I also have sjogrens disease, RA and raynauds. No one has ever checked my calcium levels till now. Heart problems doesn’t seem to be listed as a problem with hyperparathyroidism.

    • I asked my surgeon about this – he said that if you have hyperparathyroidism all your organs have to work harder – that’s why your life expectancy is less. The condition is really little-known and not much studied. Seems to me that your heart rate may well improve once your tumour is removed. Good luck!

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