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Isn't sunshine (vit d) meant to make us feel better ?

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Isn't sunshine (vit d) meant to make us feel better ?

Post by Amanda Lynne on Mon May 19, 2014 7:09 am

As the last couple of days have been so lovely I have been enjoying it by pottering around in the garden, with sunscreen on and not baking myself.
I have been awake most of the night with intense pain in most of my joints, with them popping and creaking. I'm so dehydrated my mouth is so dry, despite having a large drink of water before bed and two drinks during the night.
My eyes are very dry as well.
The only conclusion I can come to is that this extra dose of vit d has pushed up my calcium and that's what has caused this.
Could this be right ?
Amanda xxxx
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Little Audrey on Mon May 19, 2014 10:47 am

Sounds about right to me, Amanda.    I would think the extra vitamin D IS probably causing your calcium to be increased, worsening your symptoms.   I recently noticed just the opposite, which I guess is a good sign for me.   Maybe this means my surgery WAS a success?    After spending hours in the sun, the horrible muscle weakness I had been dealing with for a couple of months totally disappeared.    I then started taking vitamin D supplements again.   Three and a half years ago when my PTH was first revealed as being high at 112, calcium at 9.8, and my vitamin D low at 23, my doctors prescribed vitamin D.  I was having terrible symptoms of HPT at that time.   After visiting Dr. Norman's website, I realized I shouldn't be taking the vitamin D, but now I'm thinking maybe my body does need it, which, I guess, is a good sign.

Sorry to hear the sun is not beneficial to you at this time, and your symptoms have worsened.   Sad    Maybe in time, spending time in the sun will be a more pleasant experience for you too.

I have been a sun worshiper all my life.   My family is always telling me to get out of the sun.  They worry so about skin cancer.   The other day I told my daughter it seems the sun now makes me feel a lot better regarding the muscle weakness, and I'm looking forward to spending a lot of time in it very soon again.    She was happy it seems to be helping my muscles, but now is worrying again about me being in the sun so often.   I hate to cause my children to worry, but I'm so tired of being in pain and being miserable, I think I'm going to have to opt for lots of time in the sun.   I can't possibly function in such a weakened state.    I am still going to continue taking some vitamin D supplements.   Maybe I'll cut back a little once I can get out in the sun more.      It is amazing the effect the sun has on us all.

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Lucycatnaps on Mon May 19, 2014 10:55 am

Hi Amanda,
I cannot say definitely but I suspect you are right.  That is exactly how I felt last Dec/Jan when my symptoms first appeared.  I had the mouth lesions start end of October, read some research that Oral Lichen Planus may be linked to low Vit D levels and so in December I started taking 1000iu Vit D alternate days with a multi vit.  I took about 25 in total but by Dec the thirst was severe, drinking water did not quench it. Blood tests showed an elevated PTH and calcium and I stopped the D straight away.  The thirst has lessened until this week when it feels worse again and like you have been sat out in the garden for a short time the last couple of days.  Having said that my calcium was 2.75 a couple of weeks ago and I was not so thirsty then so not sure I can correlate the high thirst to a high calcium level.  It is so hard to know what to do for the best, stay in, sit out???  The symptoms are rotten and we all suffer so much with it, hoping you feel a bit less sore later on.
Hugs Sue
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Amanda Lynne on Mon May 19, 2014 12:07 pm

Thanks I'm feeling a bit better now still v achey, head achey and thirsty but I have things to do so I have to get on with them.
Audrey slap on the sun screen and catch those rays  sunny As long as you don't bake yourself a bit of sun will do you good.

Amanda xxxx
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Tigerlily on Mon May 19, 2014 1:32 pm

Hi All

The sunshine/sunscreen debate appears to continue - and there is some thinking that we have not been best served by Cancer Research over the last few years recommending using sunscreen all the time when going in the sun. It appears that it prevents the synthesis in the skin of the Vitamin D precursor.

I know - something else to content with!

Have a look at Dr Holick's site - he is one of the US experts on Vitamin D (and will even answers emailed questions in his Q & A section on this site:

www.drholick.com

And also one of our own UK experts is:

www.drdavidgrimes.com

Having pored over their sites (and already had a malignant melanoma removed from the side of my foot where the sun don't shine very often ...), I now only used a moisturiser with added sunscreen. If I go out into the sun it's without sunscreen and for 10 minutes "toasting" only with arms and legs bare if possible to top up my Vitamin D. (Sorry, that sounds a bit "me-me" - but just trying to help.)

Obviously, I get some additional sun exposure too on sunny days, but I'm not a great slapper-on of sunscreen, even though I've had the melanoma. I just limit my time out in the sun and cover up after that.

Just some thoughts about a very controversial topic.

Love from Tigerlily xx

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Amanda Lynne on Mon May 19, 2014 1:42 pm

Wise words Tigerlily I think we all should be old enough now to get some sun without baking ourselves into a crisp and if we are going to be exposed for long then put on the sunscreen, half an hour here and there shouldn't be a problem as you say we need to get a certain amount of sun on our exposed skin.
I just wish it didn't make me feel so c**p ATM. 
Amanda xxxx
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Tigerlily on Mon May 19, 2014 2:44 pm

Yes, sorry to hear of that, Amanda.

BTW, I went to get my iron studies blood tests done last week, but they all "went wrong" except for Ferritin
which was 131 ng/ml (range 13 -150). Looks middling OK to me, so do you think that's a healthy level? Or does it depend on the other tests that "went wrong" to get a full picture?

Hope you don't mind me asking.

Tigerlily xx

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Amanda Lynne on Mon May 19, 2014 3:11 pm

Hi Tigerlily
Your ferritin levels are good so whatever else is happening your body is storing iron which is great.
You do need all the results to get an overall picture but usually if ferritin is good then I'm thinking all other iron results should be ok, but I'm no expert so don't quote me on it. Smile 
It makes me wonder how many times these results have to be repeated as we all seem to experience c**k ups on results.
Amanda xxxx
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Tigerlily on Mon May 19, 2014 4:23 pm

Thanks so much for your view of these results, Amanda, really grateful.

I'll do the other iron study tests when I have a spare unbruised arm!

Enjoy the garden - Love Tigerlily xx

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Admin on Mon May 19, 2014 6:04 pm

Info on Iron tests

Edwin
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Tigerlily on Mon May 19, 2014 6:41 pm

Thanks for this, Edwin, much appreciated.

So iron stores can get low in kidney disease.

Just flagging this up to AMANDA, who I'm sure has her kidneys checked regularly if she is having iron infusions, but we were discussing the question as to why certain conditions occur, ans so this would be relevant.

Thanks again, Tigerlily.

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Admin on Mon May 19, 2014 7:36 pm

My trigger points for an iron infusion are 200 for Ferritin and 10 for haemoglobin. 

When the Ferritin is too low, it reduces the effectiveness of the EPO (Erythropoietin) injection to generate haemoglobin.

Low iron also reduces the effectiveness of thyroid medication, apparently.

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Tigerlily on Mon May 19, 2014 10:15 pm

Thanks, Edwin, most useful in getting a handle on the bigger picture.

Tigerlily xx

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Rosieb on Mon May 19, 2014 10:31 pm

Oh dear I wish I knew all the answers  Sad 

I never go out and deliberately sit in the sunshine but I spend quite a bit of time outside in the shade so hopefully get all the vitamin D I need.  After my op my calcium and Vitamin D were low (that puts it mildly) and I was taking 9 calcium and 9 vit D tablets a day, cutting down by 1 of each tablet a week until I now don't take any. 

Drinking water is a very important part of good health and when I first went to see the specialist she told me to drink at least 2 litres of water a day.  My daughter-in-law swears by drinking water to flush the body but never cold water from the fridge, either warmed up or room temperature.
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Amanda Lynne on Tue May 20, 2014 6:53 am

Thanks everyone, Tigerlilly I don't think I've ever had problems re kidneys, not sure if I've been tested apart from usual full blood tests. What would specific testing for kidneys be and wouldn't I have had some symptoms.
Been awake since 4am and am feeling crap.  Crying or Very sad 
Amanda xxxx
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Tigerlily on Tue May 20, 2014 9:01 am

Hi Amanda

Sorry you woke so early - I've been doing that recently - sleeping 11 - 3am and then can't sleep again. I usually get up and have a conversation with Audrey or Nancy across the pond!!
I don't like to take "real" sleeping pills so because it looked as though I was trading night for day over the last few weeks I persuaded my GP to prescribe me some melatonin - 1 x 2mg tablet about an hour before bed. They seem to work quite well, and although I still wake at 3-4am I can usually drift back.

I think the first sign of kidney problems can be puffy ankles. The puffiness behind mine looks just like a second ankle on both feet, and my eGFR is greater than 60 (but not greater than 70 or 90), so mine are obviously struggling a bit.
And my urine calcium is about 8 which is beyond the top of the range for a female.

I'm sure EDWIN will chip in here as he seems to have these issues, I think.

This gives useful info:

http://www.labtestsonline.org.uk/understanding/conditions/kidney/start/3

Hope you feel better today soon, Amanda.

Love Tigerlily xx

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Admin on Tue May 20, 2014 9:19 am

Hi Amanda

The usual indication of a renal dysfunction is the eGFR.
Link to info on eGFR

I did not really notice the effects of a decline in renal function until I was at stage 4 CKD, so you would not necessarily be aware of any problems until a late stage.
The thing is that the body compensates, so you do not necessarily realise that things are gradually declining.

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Amanda Lynne on Tue May 20, 2014 9:40 am

Hi Tigerlily
Sorry I'm a miserable old goat ATM (couldn't find a smiley of a goat)
My creatinine has always been ok, on the lower end and as I still haven't had reply from Endo re 24 hr urine which showed low on last one, but she did admit it had been cocked up so who knows if that is correct anyway.
When it gets warm I do get one puffyish ankle and foot but not sure what that is to do with, it's noticeable to me as I usually have v slim ankles and the left one and foot definitely looks fat. I've only noticed this last summer and a bit the other day so the jury is out on that.
I have rung the GP and have been put on triage and now have to wait for one of them to call back.
I then have to try to explain everything about back pains, headaches over the phone so they can assess if I'm deemed worthy of being seen today. At which point I will then get an appointment at end of this mornings surgery, probably with one of the really useless GPs at the practice, who I will have to tell my whole sorry story to again.
I ABSOLUTELY DREAD RINGING THE GPS, I know when I get there it will be a waste of time, if I get there at all. 
I hope this feeling extra bad will pass soon, I want to be back to feeling well again so much and just to get on with everything.
I've got so much I want to do but it's all on hold, I can't even do my painting as the headaches stop me being able to do it.
Right that's enough moaning and feeling sorry for myself. I know I'm not the only one feeling this bad and just have to get on with it.
I'm now going to post the letter I emailed to Endo on Friday and resend it just in case they didn't receive it !!!!!!!!! Mad
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Amanda Lynne on Tue May 20, 2014 9:46 am

GFR = 92 ml/min/1.73m2
I have just calculated this from your link Edwin. I think it's normal ?
Thank you so much for your help.
Amanda xxxx
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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Little Audrey on Tue May 20, 2014 12:02 pm

Well, I am rather stupid when it comes to the sun, and I will be the first to admit this. For many, many years I have floated on a raft in a pool for at least 4 hours at a time with NO sunscreen. And I would do this at least once or twice a week all summer long. About 15 years ago, I started using sunscreen on my face ONLY. This is why my family has so much trouble with my sun habits. I tan so deeply, I have tan lines all year long. I bet you all didn't realize I was this stupid, did you? I usually burn a couple of times at the beginning of summer. After that, it doesn't matter how much time I spend out there, I won't burn at all. I know I am asking for trouble, but that sun and the heat feel so darned good on my muscles and bones, I just can't stop! I do so many things in my life to take good care of my body, I think this is my only really bad habit, and I know it's a biggie! When I am on that raft baking, I am in heaven! Although, because of all the neck pain over the past few years, I can't fully enjoy lying there, but I still do enjoy it. Shame on me!!!

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Tigerlily on Tue May 20, 2014 12:03 pm

Oh no, Amanda, my long long long reply to you has not appeared here - so sorry!

But the main thrust of it was a hint about ringing the GP: tell them of your unrelenting headache.
That usually frightens them a bit as it can be a symptom of something important that they would not wish to miss. They have probably been instructed to let bad headaches have an appointment, so that could work in your favour.

Sorry that my longer post disappeared - or crap! As Audrey would say!
I've reported it to Edwin as it seems to happen quite often when 2 people post at the same time.

Hope your day and your head improves - Lots of Love from Tigerlily xx

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Admin on Tue May 20, 2014 1:17 pm

Amanda Lynne wrote:GFR = 92 ml/min/1.73m2
I have just calculated this from your link Edwin. I think it's normal ?
Thank you so much for your help.
Amanda xxxx

Looking very good Amanda

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by tiniegil on Thu May 22, 2014 2:26 pm

Hi everyone, this made me sit up and take note as when going through my many blood tests the GP asked if I had been on holiday recently to which I hadn't Crying or Very sad so this may explain why, so would this mean do you think I should avoid the sun or go out in it ?

Also he ask if I drink alcohol 9wish I liked it really lol) and this has been a couple of times now, and I don't- unless he counts a  half glass of wine and lemonade Christmas day ! he never explains why he's asking about that and seems to bypass any questions I have very well and I get very frustrated as to the 'we will check your bloods every 3 months' but nothing else happens, not that I want a operation but if were to make me feel better would be there in a whizz !

Also last time with urine sample ended up doing 3 as they rang to ask for another a week after previous any ideas why?. it is great being able to pop on here and ask a question thanks in advance.

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by tiniegil on Thu May 22, 2014 2:34 pm

Amanda Lynne wrote:Hi Tigerlily
Sorry I'm a miserable old goat ATM (couldn't find a smiley of a goat)
My creatinine has always been ok, on the lower end and as I still haven't had reply from Endo re 24 hr urine which showed low on last one, but she did admit it had been cocked up so who knows if that is correct anyway.
When it gets warm I do get one puffyish ankle and foot but not sure what that is to do with, it's noticeable to me as I usually have v slim ankles and the left one and foot definitely looks fat. I've only noticed this last summer and a bit the other day so the jury is out on that.
I have rung the GP and have been put on triage and now have to wait for one of them to call back.
I then have to try to explain everything about back pains, headaches over the phone so they can assess if I'm deemed worthy of being seen today. At which point I will then get an appointment at end of this mornings surgery, probably with one of the really useless GPs at the practice, who I will have to tell my whole sorry story to again.
I ABSOLUTELY DREAD RINGING THE GPS, I know when I get there it will be a waste of time, if I get there at all. 
I hope this feeling extra bad will pass soon, I want to be back to feeling well again so much and just to get on with everything.
I've got so much I want to do but it's all on hold, I can't even do my painting as the headaches stop me being able to do it.
Right that's enough moaning and feeling sorry for myself. I know I'm not the only one feeling this bad and just have to get on with it.
I'm now going to post the letter I emailed to Endo on Friday and resend it just in case they didn't receive it !!!!!!!!! Mad

Hi Amanda Lynne
Your certainly not a miserable old goat, maybe a down in the dumps one lol ! seriously your amongst fellow ones who know that a day like yours is orrible and totally agree with you ringing the GP's they make you feel like your wasting their time, my other half says I should stand my ground more, I still think it goes over their heads though and like you I hate ringing up or going to them. So have a good ole cuppa and biccie and watch a fav programme maybe. Hope you feel loads better soon sending you lots of pixie dust  Like a Star @ heaven  Like a Star @ heaven  Like a Star @ heaven  Like a Star @ heaven

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Re: Isn't sunshine (vit d) meant to make us feel better ?

Post by Amanda Lynne on Thu May 22, 2014 2:58 pm

It seems we all have these same experiences with doctors !!! Why is it they are paid so much !!! I can't remember !!!
Thanks for the pixie dust  Smile Amanda xxxx
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