Update 10 weeks post op

Hi Everyone
You are all very busy posting on the new forum, I feel quite guilty that I haven't been on for a while.
I thought I'd share my latest news as I have now taken two lots of the 50000IU of vitamin D. I tolerated the dose quite well but last Thursday came crashing down with terrible symptoms of anxiety, bone pain, tingling, headaches. I couldn't understand it as I had been feeling better. On Saturday It was so bad I couldn't go out.  
Am waiting for my endocrinologist to call me back as I'm not at all sure what to do next. I read a piece saying you must take magnesium with vitamin d but will have to see. Maybe menopause otherwise?? 
I noticed book goose had posted on old forum about post op problems and it would seem vitamin d status is important, maybe get checked? My calcium is still 2.1 and PTH 3.5 so surgery has worked and now I suppose we deal with the fallout.
I have very wobbly legs, twitching and tired muscles and endo thinks vitamin d will sort it. I'm just thinking might go on holiday to sun instead of pushing large dose pills down!!   
It's good to catch up with you all, it seems I have missed a lot of American English discussions haha! 
Best wishes
Love Lynn xx
Ps sorry to be moaning when I know so many of you are still struggling pre and post op

Good to hear from you Lynn although I'm sorry to hear that you're still struggling with such debilitating symptoms.  I hope your endo comes up with something positive for you.  I'm waiting for my results from my bloods from last week and praying that they have now come back down to within normal range; glad to hear though that yours are good and low.

Keep on keeping on Lynn, you're in my thoughts and prayers and I hope you'll soon start to feel the benefit of a successful surgery.  And yes, go on that holiday ........

Jasmine x

Hi Lynn lovely to hear from you. I was given that dose of vit d by my GP after op. 3 doses later and I felt terrible, palpitations, rashes, headache and anxiety so I stopped and I went away after about 3-4 days. I only take low dose now if my vit d drops low. I'm with you get some sun instead.  
Amanda xxxx

Hi Linny,

I was just writing about Vit D and it's effects on us, pre & post op.
Sorry to hear you've had bad side effects, even after surgery.

I'm Canadian, so I'm not sure what your Cal/PTH levels mean...are they now within normal range?
Perhaps they need to be in normal range for a bit post-op before extra Vit D is added to the mix.

The symptoms that you and others describe, are the exact symptoms I've read about when Too Much Vit D is taken.
Not sure if it's D3 or just Vit D you were taking, or if in pill form or liquid. It does make a world of difference.

And yes, magnesium is vital for assimilating Vit D.
BUT, I think some ferreting out of info is greatly needed to avoid these side effects. It's happening to too many of us, and it shouldn't be that way.

I'm going to do more research on it, provide some links as to the side effects. The benefits are great...to a healthy body. Yet, as I've said before in other posts, when our Cal &/or PTH is elevated, our bodies protect us by keeping our Vit D levels low, so we don't suffer the ill effects.
Now what is considered 'elevated' is different for all of us. Therefore we need to have that Vit D tailored to our unique levels, pre & post op.

Remember also, that Vit D from the sun, takes about 48 hours to absorb through the skin. Vit D3 is also 'fat soluble'...meaning, it needs to have a fat present to make it available to our bloodstream. Some folks use coconut oil or some such, on their skin in order to achieve that. And I've also heard that showering after sun intake, removes that Vit D from our skin. Some peeps just do bird baths on their nether regions and feet, so as to leave the absorbed sun and oil on their skin.
I'm not keen on the idea of not showering for 2 days after roasting on the sand   ...to each his own I guess.

But once I'm post op, I'll be trying to get as much Vit D3 in my body as I can...along with magnesium and Cal.
Again, it'll be determined by what my levels are. I'm not that highly elevated, so I'll be keeping a close eye on my blood tests afterward.

Hope this helps a bit, and also brings about the question of how to get our Vit D back to normal, in a safe, sane manner.

Best,
Adele

Hi Lynn,

Nice to see you again.

Yes, I do think you would benefit from some vitamin D, as your calcium is a bit low. I think I'd opt for the sun too if I had a choice. If the sun alone doesn't give you the boost you need, I think it would be a good idea to add the supplements also. I'm sure you will be discussing this all with your doctor. Good luck!

I have not had this problem with my vitamin D. Although, mine is relatively low at 49, my calcium is at 10.2, so I really don't wish to take any vitamin D at this time. I guess if my parathyroids are functioning normally now, they would be able to regulate my calcium if it went higher, but I don't really want to take that chance. Although, I too have been having a lot of trouble with twitches, and this past week my legs and arms have felt VERY rubbery and weak, so maybe I do need a little vitamin D. I'll be out in the sun swimming just about every day very soon. Hopefully, that will take care of any low D issue for me.

Stay strong and keep marching forward! Hopefully, your symptoms will resolve soon, and you will feel better.

Audrey

Hello Lynn

Nice to see you here again amongst friends.

May I ask if you were given any calcium tablets to take post-op?

Your twitching and tingling sounds a bit like low calcium to me - I hope other post-op members will be able to chip in about this.

As I understood it, the 50,000 iu dose of Vit D is given for severe Vitamin D deficiency. I've not been diagnosed myself yet because it is thought I have a simple Vit D deficiency and not pHPT, and I've been prescribed the 50,000 iu Vit D programme twice now by two separate endocrinologists. It increased my calcium levels each time I did it, so I wonder if your endo is thinking that this might be a way to increase your possibly low calcium level? It doesn't feel like a good idea to me to take such high doses of Vitamin D after having had the operation.

Just my thoughts, and I may be quite wrong.

Take care of yourself, Lynn, and I hope you'll be back to your post-op normal after seeing the endo again.

Love from Tigerlily xx