Any advice please -parathyroid tumour

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Hi, I am 48 years old and been suffering many years with pain all over my body, my hip pain is the worst, closely followed by shoulders, wrists and hands, then buttocks, more recently knees.  My history has been a bit of a nightmare - diagnosed first as fibromyalgia, then early RA, then back to fibro, abnormal anti-bodies (auto immune disease).  Years ago I complained to my gp about mouth ulcers and was discovered I was low in vitamin D.  Two years ago I started suffering extreme head sweats and a few weeks ago I realised that I was still getting mouth ulcers even if I was just a few hours late taking my Calceous Vitamin D and told  my gp, adding that I was concerned that I was still low in vitamin D.  Blood tests revealed that I am, even though I never miss the tablets, get lots of outdoors when able, eat loads of fish, eggs etc.  So, doc thinks its a parathyroid tumour and according to the website the only 2 reasons you would have low vitamin D is 1- if you don't actually get any and 2 - you do have a tumour.  So its looking pretty much like this is the reason and I am guessing surgery will be necessary.  My concern is, my muscles and bones ache so much, I walk like a very old woman.  My life has really been mostly bed bound for the last few years with pain, having to use a stick a lot when I do go out - on good days I will be out as much as possible and walk as much as I can-yeah the consequences are usually the next day in bed, but I try to push it as much as I can.  I have put so many things on hold, work and social and missed out on so much.  Now, I am wondering - if and when this is sorted out, the tumour removed (if the doc is right and I do believe he is) will my aches and pains go?  Will I have a better quality of life?  If osteoporosis has set it - can it be reversed?  I have also noticed very recently things becoming much worse.  If I move my hand in a different way the pain is unbearable and feels like something has just broken - my index finger has started moving involuntary, kind of jumping - is this related to anything?

So many questions!! sorry - I just wonder whether there is anyone that can relate to all of these symptoms and advise?

Thank you in anticipation x

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11 Replies

  • Posted

    Hello Sandy

    Sounds like you are not absorbing oral Vit D. Have you ever been prescribed Vitamin D ijections? SOme medications can stop vit D being absorbed from the gut. Statins, PPI;s anti epileptic drugs probably some more.

    Are you under a specialist for the Vit D deficiency or a GP?

    Have you had a full bone profile done?

    This should include the calcium, phophate, Vtamin D and Parathyroid hormone level.

    Have you had a scan done of your thyroid/parathyroid gland. Have you had a Dexa scan done at all to investigate the possibility of osteoporosis?

    Hav you had your antibodies tested ? Has anyone suggested the possibility of Lupus ?

    Youur GP should be able to initiate some of these investigations. You can also get get blood tests done privately but I advise going throough the NHS if possible in order to save money.

    I receive frequent leters from the Vit D Council tooo.

     

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    • Posted

      Hi Jean, thanks for reply. I am not yet under any specialist, having all the blood tests done in about an hour, then after that I have an ultrasound scan of my bladder as I have also been having problems there, I am going for a wee very often and have had some pain, particularly first thing in the morning. 

      Yes antibodies show as abnormal.  Lupus has actually been suggested by various doctors but not in the rheumatology and I was discharged from there by a locum!

      I am just hoping these blood tests reveal something that can be sorted out cos I really don't think I can take much more.  I didn't sleep till about 5  or 6 and it was just dozing and waking, then my very inconsiderate partner started making a load of noisein the conservatory right next to my bedroom and kept waking me once I did eventually fall asleep.  I have been screaming at him for being so inconsiderate.  I wonder whether he does it on purpose actually.  Its ok for him, he is out like a light and wakes refreshed while I am tossing and turning just trying to get off, then when I finally do he wakes me!! my eyes are aching now, my head is aching and I am so so fed up of life, sorry for the moan!

      thanks again for your reply x

       

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    • Posted

      Hi Sandy

      You are not moaning your concerns are perfectly understandable.

      Noise is very intrusive especiallly at that time of the night and can cause a lot of stress.

      Re the bladder problem. Have you had a smear test done? Have you  ever been  cecked for candida/thrush. Scrupulously clean poeple can people get this so it is not a reflection on you.

      When you are at a low ebb people can succumb to all types of infection.

      Bladder problems can also be caused by a condition called interstitial cystitis. This means that for some reason or another usuallly an infection the mucosa of the bladder becomes inflamed and is irritated by the acidic urine.

      Sometimes the person is suffering from acidosis. This has to becorrected under medical supervision. As a precaution and/or treatment I take a quarter of a teasponn of bicarbonate of soda about twice a day and avoid acidic drinks and foodstuffs. Drinking plenty of water can help to dilute the urine annd malle it less of an irritant to the bladder to the bladder.

      Jean

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  • Posted

    HI sandy

    You mentioned seeing a rheumatologist. DId they do any tests for lupus r antibodies?

    The Locum should not have discharged you. I would look into that and ask for a review or alternatively a referral elsewhere.

    Lupus may be the cause of our signs and symptoms as it can affect most of our body systems. However no point worrying over that jst see if someone will do the relevant blood tests.

    Jean

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    • Posted

      Hi Jean,

      I am not sure whether my rheumy did the lupus tests, she said it was early rheumatoid arthritis, as inflammation has shown in my hands, wrists and shoulders.  She is a really good rheumy, very young, but thorough.  Unfortunately (well for me and her other patients anyway!) she is on maternity leave andthis is why I had to see alocum who dismissed everything as fibromyalgia, and then said "you will always be tired and you will always be in pain and nobody can everdo anything to help you"!!!  Well, she never did any tests forvitamin D deficiency - if she did she would see that I am not being a hypochondriac at all - it has becomevery clear that I am not absorbing it as I have been taking calceous vit D for years and still deficient, so there is definitely an underlying cause. Being vitamin D deficient causes all the problems I am experiencing and have been for years - chronic fatigue, tiredness, aching bones and muscles, uti's, confusion, forgetfulness, headaches etc. etc.  I just can't wait to get the confirmation that it is parathyroidism and then once surgery isdone, things will start to improve.  According to the main website, bones stop aching within hours!  Theheadaches have been dreadful for 2 months - every single day, sometimes excrutiating pain.  I have had them ALL day for the last three weeks too. Had a brain scan which showed nothing sinister thank goodness.  A and E said it was codeine related as I take a lot of co-codamol, but now after looking into the parathyroidism I have seen it is one of the symptoms.  I can't stop crying- depression is also a symptom. I almost drank a lit candle last week - I was thirsty and just saw liquid! The only thing that actually stopped me was the fact it was still lit, so the flame made me realise just in time- how silly is that?!?! lol  I got some pills yesterday 2000mg calcium x 2 to be taken once a week, so I took the first ones after my blood test and abdo/bladder scan and I can't find the rest! I have no idea at allwhat I have done with them!  My daughter gave me her hospital letter appt to look after the other day - I have lost that too.  I feel like I am totally losing grip of everything.  Oh well, hopefully just a few more days and I will know for sure.

      Thanks again for your help Jean x

       

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    • Posted

      Hello Sandy

      All your signs and symptoms may be due to a parathyroid problem. Calcium is important for the helthy functioning of every cell , every organ in your body. Consequently if the level is abnormal it can make you feel very ill indeed.

      The afore mentioned info came from my cnsultant neurologist who is a Prof of Neurology.

      Losing things. We all mislay things from time to time. I would not worry unduly over that, the 'lost' items have to be somewhere and will turn up when least xpected. Although it is annoying when one cannot find something but it happens to the best of us.It is not a sign of losing your grip, if you were you would not even be aware that things were temporarily 'lost' mislaid.

      CODEINE.

      yes it is true actually that codeine can be the cause of codeine induced chronic migraine. You do not need to take much either. Say 3 to 4 a WEEK according to an expert in chronic migraine!!

      DEPRESSION.

      This can also be caused by codeine because codeine suppresses even can stop the production of endorphins , the bodys natural pain killers and  anti depressants .

      Codeine also lowers the pain threshold. It is addictive.

      Codeine causes several nasty side effects .

       

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    • Posted

      SANDY

      RE read your posting. I started off like this 18 monthss ago. I wassent dowwnthe migraine route hence the info from the neurologist about odeine related headaches.

      you need to be re referred and reviewed. it is not good enough for any dr especiallly a disinterested locum tofob you off like this and try to make you lose heart and hope. doctors are not supposed/allowed to dishearten patients it is unethical.

      I would shop around for an allternative positive enthusiastic interested doctor/Rheum and take it from there.

      It is easy to second guess a diagnosis and bllame codeine. codeine may bepartially responsib;le but it is not the whole picture.

      You need several auto immune antibody tests doing plus dexa scan, bone profile and ossbly vit F, vit D injections, calcium etc, etc.D injections if the dr suspects that oral Vit D is not being absorbed from your gut.

      Other meds could be stopping this absorption.Do not give up trying to get some treatment and a differential diagnosis.

      The Locum sounds as though he or he has been told to discharge as many patients as possible as a cost cutting exercise.

      Mind you I am very cynical.

      Jean

       

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    • Posted

      Hi Jean,

      Sorry I never saw this reply till now! I rarely go on here and have been suffering so much I am crashing out all the time.  I struggle to go to work, then just sleep when I get home.  I still have the headaches, still not sure what is causing the vitamin D deficiency, although have been taking 20,000 units x 2 weekly, so 40,000 units a week for last few weeks, then have to have another blood test and see GP afterwards.  My mouth ulcers have become dreadful! very big and painful, not every day thankfully but often enough to make me miserable. He has dismissed the parathyroidism now following blood results, so I have no idea why this is happening, just that I am cracking up with fatigue and aches all over.  I am also due to have a hysterectomy soon.  I am having GNRH injections and had my second one last week.  You only have 3 pre-op so the nurse said it will be within 6 weeks of my final injection which is in 5 weeks.  She thinks it may be before christmas, or very soon after.  she said immediately she saw me that I look very pale compared ro a few weeks ago so ordered moreblood tests.  I havebeen torn on whether to go ahead with the surgery with still not knowing what is causing this deficiency.  what if this makes things worsr?!?!  Oh dear, I really do not know what to do!

      Thank you so much for your replies and I am sorry I have taken so long in gettng back to you.

      I hope you are well xx

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    • Posted

      So very sorry to read all that you are going through.  I see you havent been here for around a month now, so hopefully that means you are improving.

      Like Jean, above, I am also cynical about the system here and the cost cutting.  I only noticed by chance that my blood calcium was slightly elevated, GP didnt even notice and was trying to persuade me to chew on 3000mg of calcium a day because of my severe osteoporosis. If I had done as she said, would probably have ended up killing me.  I realised I would have to go down the private route and see an endocrinologist.  Normally people have a parathyroid blood test at surgeries, but oh no not my surgey, the excuse "the sample could go off in the van", so I had to have that done privately and it came up as over the normal range, then it has fluctuated and back down again, much the same as the calcium which when it was over "no further action" was flagged on my blood test.  I do actually have hyperparathyroidism and am waiting on a sestamibi scan.  I have the most horrible symptoms and some seem to relate to hyperthyroidism, however, I had the thyroid test and they seem to be within the normal range.  Again, my surgery told me they are not allowed to take samples for Free T3 and Free T4 only the ordinary T3 and T4 which gives an overall reading so can be misleading, so I had to have the Free T3 and 4 done privately.  Even though my calcium and PTH fluctuate and are not very high as some people's are, my vitamin D is good which is unusual but then I always have to be difficult.  I would suggest to you that you get copies of all blood tests you have done, it is your right, they might not like it at the surgery but tough, they are obliged to give them to you.  I dont trust anyone now after all this months of misery.   I do hope you get yourself sorted out, so miserable for you and you are only 48, I am 20 years your senior.  Good luck!  I created a new post about a private Facebook group this morning and am urging people to join.

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  • Posted

    Hi Sandy,

    I too am 48 years old and for the past 9 years my PTH hormone was veryt high, it is supposed to be under 6.9 and when the bloodwork came back it went as highas 17.3 and my vitamin D level was very low and I was taking 50,000. units weekly and still had pain paralyzing days.  I was diagnosed with Secondary Hyperparathyroidism disease.  I was finally scheduled for a parathyroidectomy in 2015 and almost all of my parathyroids had to be removed because they all had large tumours.  My Endocrinologist removed both right parathyroids and left me with half of one and a quarter of the other one on the left side.  I don't have to be on thyroid medication, thanks to my brilliant surgeon.  My calcium and Vitamin D levels have been amazing since the surgery and it's been almost 15 months, it beats being bedridden day in and day out.  I hope this helps and good luck. Pavtad

     

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