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?
So he has been tested for PTH & calcium levels and they are above normal levels?
Hi, Yes his calcium is around 3.2
There are so many horrible side effects some of which are:
mood swings
depression
tired
oesteoporosis
foggie thinking
changed voice
every bone aches
every muscle aches
non ambulance (can't walk far)
apetite changes
odd sense of taste of food
cold - even when it's warm
warm -even when it's cool
AND many many more
Thanks Phil. My main concern is the difficulty I am having this past few days in waking him up from sleep. He seems to have worsened considerably in the last couple of weeks having only been able to attend 5 school days out of 10. Hospital seem ignorant of symptoms.
Get on the list for parathyroidectomy asap is my advice - in UK it can be a long wait and it's the only thing that will help sort this out in the long run. All else will only work for a short time if at all.
OK. Thanks. Have you had this op?
Pits my wife (I'm her carer) and the op is due on 30th of this month. We've been waiting for two years due to bed blocking, politics and finance. 😡
however the the operation is the only thing that works and everything else only helps a bit and then usually temporary so push for the op ASAP.
best of luck
Sorry to hear that, I hope the op goes ahead as planned on the 30th and she feelds better for it. 
I think a major problem for my son is the lack of knowledge about the condition generally, and more especially in teenagers, so I am going to print out lots of info ( parathyroid.com looks really good!) and then start hassling the professionals with it.
Thanks again!
Hi
My surgeon told me anything above a blood calcium level of 3.0 was an urgent need for a parathyroidectomy. Mine was 2.8 when I finally got my operation. It will only get worse I'm afraid. He is too young to be going through this. Doctors always seem to need a kick up the backside where this complaint is concerned. Mainly because they dont understand it. And a doctor told me that !
Keep on pushing for it and I hope you get some answers soon
Aaaahhh.....thankyou Gaynor! I thought I was being paranoid.....they do literally not know about the condition do they!? Trouble is we have an appointment to see the surgeon next week so they won't do anything, but it's only a consultation so who knows how long till the op.....
If you don't mind me asking, was chronic fatigue an issue for you? Only I don't know whether I should let him sleep or try and make him go to school....they sent him home today!
Chronic fatigue is very common and as far as I could find out continue until four to six weeks after a successful operation but then abates and recovery is supposed to be remarkable
Thankyou Phil. Guess we will just have to keep trying ..... And I will have to start getting more pushy at the hospital. 😊
Hi Kath,
Not sure if you can find any of my threads on here, About my story...I know exactly how your son feels, they diagnosed me with chronic fatigue since age 18 ( yet sufferd with illness from age 8 yrs) Finally had enough this jan 43yrs young. So new DR ran tests for Vit D, Calcium and PTH.
Over a period of 6 mths the PTH started at 12.5 and even after op ,the level was 25 , yet now falling to 8.9 ,calcium went up to 2.89 now we think 2.6 yet awaitng results still.
The symptomps can be the same as chronic fatigue and ME, hence not many drs are wiling to test for calcium and PTH levels, so fantastic news that you have got him this far, and they have recorgnised that he has high calcium, I'm so glad they have caught this now for him rather then carying on with it for years and years to come and then having both like me! The fatiuge is hurendus like having the flu without the cold symptoms. The list that Phil wrote is pretty acurate!
Because I had been so ill and my op was not straight forward the recovery time for people can be pretty mixed. Yet the op is the only way to cure it. I had my op on July the 20th and I have just managed to go back to a 21 hour working week this week and hope to do my 24 hours next week. I have been supported with homopathy and Physio and Chriopractic and just still awaiting blood results for the final- yes this has worked. I wish they had found this 20 yrs ago.
Have they done a scan there is two types one where he lays on a bed and they inject him with radio active dye and then the camreas go round his head and his neck to see if they can see which of the four parathyroids are faulty ( did not show in my case so we had to rely on the PTH bloods) and I also had an ultra sound on my neck and then a Xray with dye.
In the mean time, to suport his symptoms, I can recomend a really good liquid vitamin B- It won't cure him yet it can support his energy while you are waiting...called Max B-ND by premier research labs, half a teaspoon in 60ml of water.Once a day there are two suplyers in England it's expensive yet good ,i buy the 237 ml bottle.
Also not sure where abouts you are in the country ? I'm in wilts area, I see a really good homapath who has helped me other the years, with symptoms and she tested me for a remedy called Calcium Phosphate which supported my calcium levels/ whilist waiting for the op. Also I took between 1000 and 2000 iu liquid vit D of Bio Care or they may recomend there own Vit D tablets they should test for Vit D in the blood as well.
Also to try and manage the fatigue and all the other symptoms- over the twenty odd years I found the following helpfull - try and grade his activity- so do so much for say four hours then he must rest for so long then do so much then rest again- not easy for a fiffteen yr old to do? Also does he get frustrated?? if so would he listen to a meditatin cd at bed at night or when he is strugling- Arch Angel Michael by Dianne Cooper on Amazon is good. Also look into Bach Flower remedie Olive os very good for energy-boots sell them.
One more thing to help him with his frustration is mindfull ness and my be a loal meditation group.
He is not being LAZY the fatigue can be so intense when you have it at scholl that you just want to lay down and sleep!!!!!!!!!!!! Because he is still growing and his hormones will be adding to the weird hormines that the PTH is kcking out!!
My process was not to long in the end Jan to July.. keep ringing your Drs and counsultants, when I had my appointment with the surgeon in the May it then moved quite quickly to the July- keep pushing the consultant and tell them how bad he is list all his symptomps...so glad they have found it know for him while he is stll young
I had to wait twenty years.
Pleas contact me if you want any more help.
Here's to happy healing on the right path for your son!
Hi Kath
the bottom line is that this condition will only worsen. Long term excess of calcium in the blood starves calcium take up by our bones. This in turn causes osteoporosis and damages major organs in the body long term. (dont mean to scare you) Common sense and true. At the age your son is at the moment it will affect his education at a crucial stage in his life if the problem is not corrected. Feel quite angry with the apathy you are experiencing. Please keep us all informed on his progress
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.
So sorry to hear your story Fluffy! I am very pleased to know that you are finally feeling a bit better and can manage work again....but you must be so cross at the damage that has been done over the years.
I have shown him this conversation as I have found it incredibly helpful and reassuring to hear from people with first hand experience. I was beginning to think I was a useless mum with not being able to make him get up and go to school, or go out and play football with his mates, but I am starting to stress less about that and focus properly on what I CAN do about it all.
His school are being incredibly supportive and I am hopeful that if he gets the operation soon enough, that he will be able to catch up on the work he misses.
He seems to have a window during the late afternoon and early evening, for a few hours, when he feels ok and able to do stuff, so I have organised some work to be sent home for him to do when he can. The mornings however, are his worst time for fatigue, even when he has managed to get to sleep at a reasonable time the night before, so I am going with it and timetabling things in for his 'awake' times.
I will now make my focus the professionals and get this sorted for him as soon as is physically possible.
Thank you so very much for sharing your experience. I wish you well!
Thank you Gaynor.
I have done quite a lot of research, so please dont worry about scaring me with the details. Thank you for sharing your experiences, it is very reassuring to hear from people with first hand information. Fingers crossed he will get sorted asap.
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.
Hi Kath how's the progress going with your son's diagnosis, have you got any helpfull answers yet?
Fluffy