1. Community
  2. Diabetes and hormone problems
  3. Thyroid and Parathyroid Disorders

my son has just turned 15 and been diagnosed with hyperparathyroidism.

Posted , 9 users are following.

kath80079
kath80079

Recently his symptoms have got drastically worse but hospital keep sending him home saying very little. His fatigue is becoming an issue and causing him to miss school and yesterday I couldnt actually wake him! Anyone else had similar symptoms?

0 likes, 55 replies

55 Replies

Prev Next
  • jillrdh22
    jillrdh22 kath80079

    Posted

    Among many other symptoms, my need to sleep was probably the most debilitating for me. And the last several months I would fall asleep and go into what my husband would call my "coma". where he almost literally could not wake me up.  The good news is that, once I had my surgery, my constant need to sleep went away completely within 24 hours!   Keep pushing as strong as you can for your son to have surgery ASAP!  Do NOT let them put you off!  There is no such thing as "mild" hyperparathyroidism. I had mine for almost ten years because my doctors ignored my complaints of bone and joint pain, exhaustion, memory loss and lack of appetite, just to name a few symptoms. I was in my mid 40's when this all began and they all told me I was simply "getting old" and completely ignored my rising calcium levels, telling me all my tests were normal. By the time I discovered on-line what was wrong with me I had developed severe osteoporosis, stage three kidney failure and joint damage that may no longer be reversible. If your son has high calcium, and it has been determined to be due to hyperparathyroidism, the only cure is surgery, and it should be done ONLY by someone with a LOT of experience in parathyroid surgery specifically. There is a Facebook group called "Hyperparathyroidism UK action for change" with many people who can give you suggestions on experienced surgeons in the UK.  The surgery itself is quick and fairly easy IF you have an experienced surgeon who has done the surgery many, many times. You do NOT want an inexperienced surgeon as they have a much higher rate of complications and failure to find the adenoma. You and your son will be in my thoughts and prayers.
    • kath80079
      kath80079 jillrdh22

      Posted

      Oh my goodness Jill.....your symptoms seem so similar to my son's! I actually had that thought on Tuesday morning, that he was in a coma - it was really scary! He has also had knee and leg pain for over three years now as well and it has been put down to his football; the fact that he is quite tall; the fact that his tendons are very tight and more. some of these factors may have contributed to his pain for example during the football season, however they do not account for the pain throughout the rest of the year.

      He has also experienced urinary tract problems over the past few years which I am now thinking may be linked to the calcium.

      I am hoping the surgeon at Addenbrookes, who we are due to see for a consultation next week, will agree that the symptoms worsening justifies a swift arrangement of the op. For now I will continue to arrange things around the time of day that he is most awake and help him to get some school work done at home, just so he doesnt miss quite so much.

      Thanks for the heads up on the FB page too, I will have a look.

      Take car and I am so very pleased that you are feeling so much better since your op. smile

       

    • elainec33
      elainec33 jillrdh22

      Posted

      How ironic jillrdh22, was only a day or so ago I was also promoting the FB group and the story of Sallie Powell's 7 years of hell down to GP ignorance.  I hope you have signed the awareness petition available as so far less than 500 signatures and we need to get it through the thick skulls of GP's and endocrinologists this is a vile disease and the symptoms should not be dismissed as they most commonly are.
  • Fluffy43
    Fluffy43 kath80079

    Posted

    Hi Kath how's the progress  going with your son's diagnosis, have you got any helpfull answers yet?

    Fluffy

    • kath80079
      kath80079 Fluffy43

      Posted

      Hi Fluffy! 🙋

      Thankyou for asking 😏 yes, when we went to Addenbrookes he had another ultrasound on his neck and the sonographer was able to see the enlarged gland. It now measures 1.5cm which accounts for him feeling so bad. He hasn't been to school at all for two weeks. 😞 Good news is that the surgeon has agreed to do the operation himself and before the end of October 😁😁😁 which is fabulous. At least we know he will be feeling better before too long.

      How are you doing now? 😏

    • elainec33
      elainec33 kath80079

      Posted

      So glad your son is being sorted out.  It seems that at least children are given priority which is as it should be.  I hope he gets on well.  Do you mind me asking who the surgeon is.  I know Professor Wishart used to do parathyroidectomies (he pioneered the first minimal invasive day surgery in the u.k.) on the NHS but have a feeling he only does private now.
    • kath80079
      kath80079 elainec33

      Posted

      Hi Elaine

      He is going to Addenbrooks and the surgeon is Mr Puyush Jani. (I think I have spelled that correctly) he has an excellent success rate, low post op infection rate. I am really pleased he is doing it. Only a week to go now booked in for the 29th :-) so fingers crossed!

    • elainec33
      elainec33 kath80079

      Posted

      Hi Kath,

      Yes I have heard the name and he is on the list of BAETS.  I do wish your son every success.  I hadnt even given post op infections a thought, so I should mention if I ever get it done about my prolapsed mitral valve as I will need to go on antibiotics, thanks for reminding me.  I still have another six weeks to wait at Addenbrookes for a sestamibi even though a private ultrasound has picked up something.  The waiting is killing me as my heart is racing all the time, this started 7 weeks ago along with horrible nausea.  Take care of yourself as well, it is very stressful for you too.

  • Fluffy43
    Fluffy43 kath80079

    Posted

    That's fantastic news, at least you have a reason and an answer for all his symptoms now. Did they check all four? That's fab that he has only got one faulty one and that the surgeon can do it himself and so quickly.biggrin

    Please let me know how he gets on. I hope his recovery is good and his symptomps go. Personal choice, homopathy, for general anesthetic and cut really helped me and physio afterwards.

    I'm doing okish? My journey to good health is again not very straight forward, the path is proving to be quite windy, rather then straight forward! Apparently I'm unique and a very rare case! removing the faulty P gland after 2 weeks made my PTH count drop and I started to feel a tiny bit better, yet then I started to feel worse again, they retested PTH and Calcium again 2 weeks ago and the readings have gone sky high again!! Confirming that I am unique and proaberly have a fith  faulty PTH gand somewhere?! Very rare apperantly, so more tests and some a bit invasive -- not looking forward to them,... to track this rouge one down!!! Then once tracked another op to remove it, then hopefully on the path to recovery and good health biggrin

    P.S Don't worry about your boy missing school, I'm so glad they have found this early for him. He can then have the op and be on the road to recovery. Then when well again he can catch up and live his life to the full!!!!!

    Please let me know how he gets on

    Best wishes,

    Fluffy

    • kath80079
      kath80079 Fluffy43

      Posted

      Oh goodness me Fluffy! You and my son are very rare cases indeed!! I really hope they track down that extra gland very soon so you can start feeling better....do you have a date yet? X
    • lynette29223
      lynette29223 kath80079

      Posted

      Hi Kath, I also had hyperparathyroidism, I had surgery two years ago and they removed three of my parathyroid glands because I had three benign tumours, they left the last gland in with a trace line. I had immediate recline be from my symptoms after living with them for five years. Unfortunately my symptoms returned after four months and I decided it was time to see a naturopath. Fortunately he picked up the problem straight away and got me right without needing further surgery and I have been good for almost a year until now. All my symptoms have returned and I am about to see the naturopath again. I eat a chemical free diet but my GP has put me on a station and aspirin and I suspect this may be causing the problem. I would make sure your son sees a naturopath after his operation and get him on some good supplements.
    • lynette29223
      lynette29223

      Posted

      That should read immediate relief from my symptoms. And GP put me on a statin. I don't like auto correct sometimes.
    • kath80079
      kath80079 lynette29223

      Posted

      Sorry to hear your symptoms have returned! Was it a gradual return? And are symptoms just like you had before the op?
    • lynette29223
      lynette29223 kath80079

      Posted

      They literally came on over a few weeks and yes they are exactly the same as before the op. I am waiting on blood test results, I see the doctor next week and the naturopath in two days. A great website for information is www.parathyroid.com 
    • elainec33
      elainec33 lynette29223

      Posted

      So sorry to hear that, what bad luck but alas you are not alone.  I hope something can be sorted out for you.  I would be interested to know how the naturopath managed to keep some of the symptoms at bay.  In the meantime please join our group on Facebook  "Hyperparathyroid UK Action for Change" which was created by a lady who went through seven years of hell due to ignorance about PTH adenoma.  She also has started a petition to try and make the NHS etc. more aware of this disease. There is a blog and facebook page run by three girls called the parathryoid peeps who work in conjunction with the Norman Clinic and they are always helpful in trying to anwer questions

      Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • lynette29223
      lynette29223 elainec33

      Posted

      Hi Elaine, the naturopath had me do a liver detox and suggested I ear no dairy from cows only sheep and goat. No tea, coffee, sugar, mushrooms, wheat flour or alcohol, I took lots of supplements including iodine. I took a variety of pre and probiotics for gut healing. I have mostly continued with this advice even though all symptoms disappeared except for dairy from cows which I suspect he will recommend to stop this morning when I see him.
    • elainec33
      elainec33 lynette29223

      Posted

      Hi Lynette,

      Thanks for the information.  I am not very good with dairy anway and have tried a very expensive tub of goat whey I bought from the U.S. I dont fancy sheep though.  I cut out nearly all that you said, apart from ginger and green tea but I literally only dangle the bag for 10 seconds becuase of the caffeine in green tea, I also take a good probiotic.  Today I have to take to my bed had an awful night sitting up all night with racing heart and nausea, this is how it start 8 weeks ago and then the nausea died down a bit.  I feel so ill I honestly feel as if I am dying.  Dont know how much longer I can take this and have to wait for another three weeks for sestamibi scan.  I am told that nausea and vomitting are common with primary hyperparathyroidism.  Never felt so ill in my life, nothing worse than nausea.  Not eating so have lost a lot of weight and am struggling to drink that revolting supergreens powder because of my now terribe diet.  Hope you get sorted soon.

    • lynette29223
      lynette29223 elainec33

      Posted

      It took 5 years for my diagnosis so I know how you feel, it is not nice. I was told not to take anything with spiralina in it, not good for the parathyroid. You just have to hang in there and know that as soon as you have the operation you will feel well within a few days. Sending you hugs.
    • elainec33
      elainec33 lynette29223

      Posted

      Thanks Lynette Im trying to hang in there but after last night I wonder if I will actually survive the coming weeks. This was how I was 8 weeks ago hence the weight loss but nausea had subsided a little 3 weeks ago and now back with the vengeance. I can't even visit my dear ok dad in his nursing home. He's 99 but can just about see to phone me. I used to get the train and bus twice a week but he understands. Hugs to you too x
    • Fluffy43
      Fluffy43 kath80079

      Posted

      Hi Kath,

      Has your son has his op yet?, if so hows he doing?

      My re tests are for mid November.

      I hope your son is ok and the op worked if he has had it. Please let me know. Best regards fluffy

       

    • Fluffy43
      Fluffy43 lynette29223

      Posted

      Hi Lynette, have you had a answer yet with your blood test results? Interesting what you said about spirulina, I was taking it to chase out the radiation and Nuclear from the sebtismi scan. Which I have got to have again in November and I was going to take the homapathic rem Xray again for the CT scan.

      Like you I have certain help from avoiding certain foods and see a Natrapath, that relives some of the symptomps, yet really strugling since they said the op has not solved the whole of the problem. The FB site is very interesting. Please let me know how you are getting on.

    • Fluffy43
      Fluffy43 elainec33

      Posted

      Hi Elaine so sorry to hear you are so rough!! Have the drs come up with any more answers yet?

      Thanks for recormending the FB site very helpfull and interesting. Next round of tests for me mid November. I hope the sickness is going. I like the puka three ginger tea bags. Also fresh ginger peeled in hot water is very soothing.

    • elainec33
      elainec33 Fluffy43

      Posted

      Hi Fluffy,

      Many thanks for your message.  I am still waiting on sestamibi on the 12th November, am dreading it actually as I dont feel well and two days before another MRI to hve a look at the "mass" on an ovary.  The nausea is still plugging away and I am still losing weight.  I realised today that maybe part of the problem is that my stomach is burning up with acid as I am hardly eating and I have had stomach problems in the past as I make too much acid. So I have bought a load of over the counter zantac and hope that might calm things down a bit.  I still get that feeling of being hot and the heart racing but it seems the thyroid tests which included Free T3 and Free T4 are okay.  Can you believe not only does our surgery not do PTH blood samples (going off in the van was the excuse) but yesterday doctor said they are not allowed to do the Free T4 and 3, only the overall T4 and 3 which I am told is not very good an can be misleading.  I certainly have a rubbish surgery.  I do hope you are feeling a little better and something will be sorted out for you.  Thanks for the tip about ginger, I had forgotten about the Puka bags.  I stopped using the ginger and gree tea as green tea apparently has caffeine in it and not good for racing heart.  Thanks again for enquirying about me.  I have a feeling I am going to be different like yourself, story of my life and my mother always had things that doctors couldnt fathom out.  xxx

    • lynette29223
      lynette29223 Fluffy43

      Posted

      Hi Fluffy, yes all test show normal Pth and Thyroid, great news. I have been back to naturopath and he said due to antibiotics my gut flora is not good so serotonin is not being adequately produced. I am now taking strong pre and probiotics plus zinc and am slowly but surely feeling better. Gut health is so important and the evidence showing the link between poor gut health and many diseases is overwellming. 
    • Fluffy43
      Fluffy43 elainec33

      Posted

       Hi Elaine so sorry to hear you feel so rough. Sometimes I take aloe vera juice to help my tummy and when I feel sick i find  the homapathatic remedys ipecacuanha and Nux Vomica  help me.  I can beleive you about the testing for PTH in blood my Drs sent me up to the local hospital to be tested for PTH and the Lab manager overided the drs and even though they took my blood twice at the hospital, he refused to test for it!!! So now I have it done at the hospital where the surgeon is. This illness does seem to make our bodies quite acidic, mine shows itself with urine challenges. Sorry to hear about the mass on your Overay. I hope they can help you with that. I take Selinium and Spirullina to chase out the radiation after the Sestimbi Scan, I hope you are well enough to have it.If you can tolerate it try and drink as much water as you can afterwards. I hope you get some answers soon. Could you see a Naturopeth to help you with the awfull symptoms you are experiencing? Try and hang in there.Fluffy

      Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Fluffy43
      Fluffy43 elainec33

      Posted

      Hi Elaine. I have sent you a message because i'm so sorry to hear you are feeling so poorly. It's being moderated as I think I named a brand of aloe vera jucice that may help you. I hope they still let the message go through as ther is other content that may help you to.
    • Fluffy43
      Fluffy43 lynette29223

      Posted

      Hi Lynette so pleased to hear about your tests results. I'm underatanding about the gut flora issue. They bombarded me with anibotics from age 8 to 26yrs, then found an excellent Natrapath who sugessted to take probiotics. I take the DR Mecolla which ones do you take?
    • elainec33
      elainec33 Fluffy43

      Posted

      Hi Fluffy, that is very kind of you.  I have just checked my messages and there is nothing there, do they moderate messages as well.  I created a discussion this morning here called "Hyperparathyroidism - the "gift" that loves to keep on giving!!  listing out my own views and symptoms that we are collating from all sufferers, present and past.    If you join our private closed group on Facebook "Hyperparathyroid UK Action for Change"  you can post and say whatever you like and have a good moan to boot.  We are all there to try and help others going through hell and also happy endings.

      Elaine x

    • elainec33
      elainec33 Fluffy43

      Posted

      By the way, was feeling so bad yesterday couldnt go out so ordered my cat food on line and remembered to add your Pukka 3 ginger which arrived this morning. x
    • Fluffy43
      Fluffy43 elainec33

      Posted

      Hi Elaine I thinks it's because I said so sorry to hear you are feeling so Cr+p.

      If they don't puplish it I'll write it again.

    • elainec33
      elainec33 Fluffy43

      Posted

      Hi Fluffy,

      Many thanks for your advice, they have printed it up now.  Good idea about the radiation as well.  If you are on facebook, try and join our group as all your experience would be most helpful.

      Elaine

      Search for Hyperparathyroid UK Action for Change  or look for me Elaine Cole with three cats.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.