Mea Cuppa: Vitamin E deficency @ 4 years


New Member
I screwed up, changed my vitamin regiment on the fly (twice) and missed that I had cut out 150 iu of E daily. That was some time between a 1.5 to 1 years ago. Last week I had my annual blood draw and they caught it. The system works. My doctor gave me a little trouble about running my tests this year, because they've been beyond awesome for the last 3, but I talked him into it. Now I doubt he will give me problems. Feel free to tell your doctors my story. This shit could have gotten serious, but we caught it whilst I was still pretty symptom free.

I figure everybody wants to know what symptoms I noticed, and I have to admit that in hindsight I can see them, but during the last six months I just felt like I was having one stupid accident after another and stressed and growing older and just generally ignorant about how my new body should look/work.

If anybody else has had problems with E, I would love to know the how you responded, what form of e, how many, how often and how long before your numbers came back up.

Here are some further details of the kinds of symptoms I’ve been blowing off:

1. Impaired Immune Response – I’ve had a persistent cough for a few months. Only happens when I really exercise, like big hills. Blamed it on second hand smoke or idk, fighting off a cold. Since the DS and kicking my vitamin's into high gear, I never get sick. Even with this.

2. Vision Problems – Yes, this one I noticed, but it just seemed like I was tired. I didn’t quite notice that it was all the time. I just happened to see an optometrist who recommended an E supplement to my hubby, but he didn’t see anything that suggested something like that for me. And your vision slips in your 50's, so I just thought it was that.

3. Loss of Muscle Mass – I developed “Frozen Shoulder”, maybe. I called them t-rex arms. I couldn’t’ really support anything unless my arms were tight to my body. All my doctors said it is common for a woman of my age and didn’t look farther. Except for my chiropractor and LMP, they didn’t buy it and were worried, but I only heard shame here. I hadn’t been going to the gym or anything because my body hurt, so of course I was losing muscle mass. I decided this was my fault, not a health issue.

4. Muscle Weakness – Blamed on the Frozen Shoulder and lack of gym. And also, because of the pain I was in, I cut back my life. I’m not sure I noticed this. However, I did start lifting weights and did see a response.

5. Balance Problems – I was “tired”, and I was just having a string of accidents for like the last six months. It’s why I hadn’t made it to the gym. These were all stupid, little accidents that happen to everybody every once in a while. I should have noticed the string of them. I broke my little toe kicking a wall, I tripped getting out of bed and hurt my tailbone, I tripped over nothing and hurt my knee. I bumped into the corner of a table and bruised my leg… on and on. If I was planning on restarting my gym membership on Monday, I would hurt myself on Friday. I was starting to wonder if this was my subconscious really trying to avoid the gym. But to be honest, I've never been the most coordinated person, so this didn't seem that weird.

6. Cognitive Difficulties – I’ve been spacey and not having the best memory, but since I cut back so much of my life, it didn’t really show up. It did seem like my brain would work fine and then I was done for the day. What I did notice I blamed on my less sleep (average of 5 hours rather than my historic 7 to 0).

7. Digestive Issues – Didn’t notice, however, over time I’ve stopped all my laxatives. I figured my body finally got used to the calcium load. Digestive issues were just chalked up to "this must be normal for this stage of post-ds life."

8. Skin Problems or Hair Loss – same weird thinning patch over the left eye that you will see if you do a search on Vit E deficiency. But about two years ago my hair got pretty thin. Hormone treatments has flushed it back out, but it wasn’t a uniform thing. My hair grew back in patches, so I just thought this was a stubborn patch. I developed a few pimples on my butt, but that was pretty common for me in the smo days, so I just thought they were back and just something my body did, or maybe because of skin folds, even though I don't really have them.

9. Edema (swollen legs/feet) – How was I supposed to know my legs and feet were actually that skinny??? I just thought it was loose skin settling down there. Yes, I saw some edema in my left foot, but the doctor wasn’t worried because it didn’t have a pulse. It would grow and shrink on it's on schedule and I tried to figure out what it was responding too. I bought a new desk chair! But since I didn't know what size I actually am, I didn't' realize that it was never really going away. We thought it was the lack of exercise and my age. Yesterday I wore good support hose and my husband could tell from across the room that my legs were dramatically skinnier.

10. Diet -- After I found out, I researched Vit E foods so I could max my diet on them whilst also upping my supplements. Only to find out that I already had done this. Almost my entire food intake had switched over to foods high in e. For example, I've been having eggs & avocado on whole wheat toast with baby greens sometimes twice a day. I craved it! I thought I had found a new favorite lifetime food. I thought I had finally found the discipline to eat healthily. It didn't taste anywhere near as good this morning now that I have some supplements coursing through my system.

So as you can see, between not knowing how my new body should be and my age and shame, I explained the whole thing away. Never even thought about a deficiency, even though I would have said that there was something strange going on. Hindsight! need more of it. :)

There might be more that I will notice as this clears up. Since hitting a mega-dose of e for the last 24 hours, pretty much all I’ve done is sleep. Great, deep, dream filled, restorative sleep, I have missed you. I hope I don’t spend too many more days sleeping, but whatever.

Learn from my mistake: No changing your vitamins unless you sit down and calculate out the whole program again. And always get your blood tests, incase you screw up.



Staff member
Glad you caught it. Oddly enough, most DSers don’t need vit E but as with everything, watching your labs is critical.

Marquis Mark

Well-Known Member
Thank you for sharing your experience. This could be very valuable to someone!

I've always taken 400 dry E day since surgery and my level has been fine (although lower than before surgery). I sometimes wonder if I even need to take it because I've noticed that with some supplements it doesn't matter how much I take, I still can't get the level to increase (i.e magnesium - 600 or 1500 mg/day and I still get the same level), but I'm afraid to stop E because I don't want to wait to be retested 6 months later only to find I really needed it!


Well-Known Member
I became deficient in E by my 3 month post op labs (pre op labs were fine). I'm only 8 months out right now. I started taking the NOW brand dry E 400 twice a day and my levels have been improving at every set of labs.


Staff member
I became deficient in E by my 3 month post op labs (pre op labs were fine). I'm only 8 months out right now. I started taking the NOW brand dry E 400 twice a day and my levels have been improving at every set of labs.
Good for you.