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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
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sue71351 kath80079
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kath80079 sue71351
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phil28950 kath80079
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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
kath80079 phil28950
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phil28950 kath80079
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kath80079 phil28950
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phil28950 kath80079
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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
kath80079 phil28950
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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!
gaynor76067 kath80079
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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
kath80079 gaynor76067
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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!
phil28950 kath80079
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kath80079 phil28950
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Fluffy43 kath80079
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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!
kath80079 Fluffy43
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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!
gaynor76067 kath80079
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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
kath80079 gaynor76067
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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.