Night sweats but all over?

[Deleted]

Hi there,
Its nice to know that im not the only one, its a worry. Perhaps as Gillie said, maybe I could have an underlying problem.

There awful, so I know how you feel!

May 21, 2012 14:12:10 GMT syd said:

I know when I've got a bad lung infection coming because I get terrible night sweats. Really horrible, I have to change the sheets every night when I have them.

Apart from that, on a "normal" day, I don't get night sweats but I am apparently pretty sweaty when I sleep!

[Deleted]

Hi Liz,
Ooo lovely, I hope that you had a great time in Scotland and the weather stayed nice for you
Theres something that you have reminded me of Liz (I had totally forgoten), my endocrinologist did mention something about having surgery if it gets to the stage that I cant cope (which im now considering), he mentioned going in the back of the neck, I was just reading up on hyperparathyroidism and some of the symptoms seem familiar to me, it also sounds like the surgery is the same, should I question him about it when I see him on thursday?
I really do hope that he can find out whats causing it, its getting me down every time it happens.

from
Katy

May 21, 2012 18:12:07 GMT liz2mac said:

Hi all,
here I am in SUNNY Scotland! Night sweats. Firstly I agree, it couls well be due to an infection that's hiding itself. Yes,Glowing, you're right, many of us don't throw high temperatures until we are REALLY ill, but can have serious infections and no fever. Hormonal/endocrine issues. Yes, sadly we get other things sometimes on top of CVID as Becks and Sam know in relation to diabetes and having CVID as well. I used to get horrendous sweats and they put in down to "the change". It wasn't, it was hyperparathyroidism. So, do go to your GP or, and this would be my choice, contact your immunology nurse specialist. Then its a case of playing knock out the obvious and then look at the less obvious. For us of course, the obvious is infection. I get "hidden " chest infections. No symptoms apart from feeling dire, tired (ok exhausted) etc. The somthing happens, like I actually check my chest or else I realise how brethless I am going upstairs and then the penny drops. As Steve has said, sweats and rigors are a commone side effect for us of infection. Once this has been ruled out, I'd ask your physician (G.P. or Immunologist) if they would please do some basic endocrine tests, as I think that the endocrine system is the next most obvious thing to exclude. I'd be very surprised if nothing became obvious after these.
Keep us informed? I do hope you feel better soon. Running with sweat is horrid, you have all of my empathy.
Liz

[Deleted]

Hi Liz and everyone,
Just to let you know that I have an appointment with my endocrinologist this thursday and then I have an appoinment with my Immunologist on 10th July.
You are right there, I have to admit, sometimes I do bother about telling him/her things incase I come across as a moaner but the bottom line is that I have to get this sorted.

Many thanks to everyone that has given me advice, it is very much apprecaited and I will follow it.

May 24, 2012 16:47:17 GMT liz2mac said:

Hi Becks,
Sorry for the intermittent contact, John & I are in Scotland visiting the Nurse specialists. We're staying on a caravan site, inour trusty home from home, and it costs £5.00 per 24 hours internet acess, so I'm being careful about how often I pay up! OK. I think you've been given some really good advice already. I really would contact your Nurse specialist and Immunologist (as Mal says, through his/her secretary) and tell them just how awful this is. Don't be afarid to really lay it on the line. They cannot treat us if we don't tell them the truth, the whole truth and nothing but the truth! Very often with us it is a game of hunt the cause of the symptoms and the very best people to do that are our wonderful Immunology teams. They are not all seeing etc, but at least they have a pretty good idea of what to look for. I'm so glad you find us supportive, thats what our aim is. We don't know all the answers, but we may have a pretty good idea where to find "a man who does" (reference to an advert some years ago, lol)
Let us know how you get on, but DON'T suffer in silence.
Liz

[slf]

Oh Katy
Please never repeat that about the guage being broken. That is a get out for doctors,one once told me my thermostat was faulty. There is no guage no thermostat or we could call a plumber :-)
That doctor did nothing to fix it,it was her way of passing me off,and not dealing with my symptoms. Sorry if I got a bit excited,but the memory of that lives with me. One of many occasions when a doctor had a chance to do something and failed miserably for me.
Very interested what you were saying about oxygen to the brain though,just wonder what causes it
Take care now
Steve

[Deleted]

Hi Steve,
I didnt know that, wont do It would be good if we could call a plumber, it would make life less complicated I guess lol.
Thats ok, I know what you mean, previous doctors have been terrible, years and years ago when I was just hitting my teens, I was constantly ill and the doctors kept saying, oh theres nothing wrong with her, shes just got a virus, even though mum knew that something was wrong and then I got pneumonia and nearly died from it, we soon moved doctors after that and mum put a complaint in, nothing ever came of it though.
The doctors im with now are the best that I have ever had, they listen and they do help.
I know what you mean, it is very strange and it would be intriguing to find out why it happens

from
Katy

Jun 19, 2012 18:39:59 GMT slf said:

Oh Katy
Please never repeat that about the guage being broken. That is a get out for doctors,one once told me my thermostat was faulty. There is no guage no thermostat or we could call a plumber :-)
That doctor did nothing to fix it,it was her way of passing me off,and not dealing with my symptoms. Sorry if I got a bit excited,but the memory of that lives with me. One of many occasions when a doctor had a chance to do something and failed miserably for me.
Very interested what you were saying about oxygen to the brain though,just wonder what causes it
Take care now
Steve

[glowing]

Hi Katy.
Good luck with your appointments. It will be very interesting to hear how you get on.
Glowing

[liz2mac]

Hi everyone, I used to have night and day sweats along with exhaustion, thirst and muddle headedness. The enocrinologist I first saw put it down to "the change" despite the fact that I had high calcium levels, high parathyroid levels and low vitamin d levels. He then wanted to treat me with tablets to supress my calcium levels. I chose not to do this, went to see another endocrinologist and he took out a rogue parathyroid gland in April. Since then NO SWEATS at all! Energy levels unbelievably good in comparison to before and (crossing everything that will cross) NO INFECTIONS since then. Could all be a co-incidence, but I do recomend that you ask for your parathyroid (PTH) and calcium levels to be checked.
Liz

[Deleted]

Hi everyone,
Just an update, I have been to see my endocrinologist, he has now turned round to me and said that theres nothing more that can be done and its just be my condition, so I will have to "put up with it" much to my annoyance.

I am very confused though because last time I saw him, he mentioned having an operation to take the glands out (or severe them, im unsure) and now hes saying the complete oposite. So back to square one.....however, when I told my Immunologist this, she was very unhappy with his response and she has asked me to go back to see my usual octor and complain as she doesnt think its anything to do with my condition (CVID), so still no answers....getting frustrated...help!!

from
Katy

[mali42]

Hi Katy
I bet you have lost confidence in your endocrinologist, that sounds worrying when they talk about operations when they don't really know the cause.

I think I agree with your immunologist and see your doctor and see what they come up with next.

I was lucky my night sweat stopped when i started ivig.

I hope you get some answers soon.

Malcolm

[liz2mac]

Hi Katy,
This is simply not good enough. I think you must ask for some hard numbers. It is possible that your GP cannot get them all (my local hospital refused to check my parathyroid levels as they said that my calcuim levels were not consistently high enough). You can however get calcuim levels done via your GP service. If these are high or in the high end of normal then ask you Immunologist to check your parathyroid levels. If these are high or in the high end of normal then this MUST be treated. It is nothing to do with having CVID or any other PID, it is an entirely different health issue and NEEDS to be treated. If you have got high PTH then I suggest that you ask you GP to refer you to Mr Palazo at the Hammersmith Hospital who is a brilliant surgeon himself and has a fantastic surgical team. He will tell you honestly if you need an operation or not. If you don't then we set about finding what you do need. If you do, then he's your man.
Liz

[Deleted]

Hi Malcolm,
I have indeed, considering he wanted to get to the bottom of it.

My doctor has now said that leave it for a month and then come back, the smell has changed now though (its now a smell of burnt dust bizzarely and it seems to have got worse and its effecting my life in general) and im also getting more worried, so Im going to see him when he gets back off holiday. I need to get this sorted, whatever it takes.

Me to, its getting increasingly frustrating.

from
Katy

Jul 19, 2012 21:28:51 GMT mali42 said:

Hi Katy
I bet you have lost confidence in your endocrinologist, that sounds worrying when they talk about operations when they don't really know the cause.

I think I agree with your immunologist and see your doctor and see what they come up with next.

I was lucky my night sweat stopped when i started ivig.

I hope you get some answers soon.

Malcolm

[Deleted]

Latest news:

I have been to see my immunologist and she is extremely unhappy with what my endocrinologist has said, she has written a letter to my doctor asking if I can be reffered to a different endocrinologist and if he can be more through.

I have also been to see my usual doctor and he has now said that leave it for a month and then come back, the smell has changed now though (its now a smell of burnt dust bizzarely and it seems to have got worse and its effecting my life in general) and im also getting more worried, so Im going to see him when he gets back off holiday. I need to get this sorted, its driving me mad

Will keep everyone informed....

[liz2mac]

Hi Kittykat, I am suffering with a phantom smell at the m,oment as well, it sort of a cross between exhaust fumes and petrol, yuk. Now I can recommend that anyone who has issues about their parathyroid should ask their doctor to refer them to Mr Palazzo at the Hammersmith hospital. He has a vast track record of dealing with this problem AND understands CVID as well as he was the one who cured me of HPT. It may be a journey for you to get to him, but he is THE man to see for this problem in England.
Liz