Iron supplements & D

[DebE13]

It's been about two weeks since my doc told me I'm on the low end of normal and to go ahead and take an iron supplement to possibly help with my extreme fatigue. I went to the store several times and did a lot of bottle reading, came home and tried to google info on iron, bought a supplement since I can't get in to see the endo until August, then returned it because I was too afraid to take it

I've been ten days without entocort after being on it since February 2012. Slowest taper ever. I never experienced C, had occasional Normans, and am basically doing the same now as at my lowest dose. Fingers and toes crossed, knock on wood, and add any other ritual that may guarantee my success. Now ten days is far from eight weeks but I'm treading lightly on everything I do because I don't want to upset the status quo. It's far from ideal but I'm ok with it if it means no more steroids.

I've opted for steamed spinach and black strap molasses daily. I'm not sure if it will help anything but hopefully it won't cause a setback. There are just so many kinds of iron supplements and so many ingredients I am apprehensive to add anything new.

My weekend trend seems to be taking three hour "naps" in addition to a normal 8-9 hours of night time sleep. I'm not happy to be sleeping away my summer but the scheduler lady was not in the least affected by plea to get in sooner. It appears I have to be patient.

My doc warned me against taking anything that said "thyroid support or supplement " and that it could cause problems. Could I have compounded some of my issues by taking the supplement offered by my acupuncturist? I didn't take it for very long and don't think I even went through one bottle but it sticks in the back of my head. It wouldn't be the first time I thought I was doing something good but wasn't.

[Fish2575]

If you are in remission and doing well, I would not risk any supplements or changes right away! Sorry about the exhaustion. That really takes a chunk out of your day!

[DebE13]

Thanks! I wouldn't consider myself in remission yet but making progress albeit at a snail's pace. I tried some black strap molasses and had some rumblings that evening that made me very uptight. I can't say for sure that was the cause but I haven't tried it again.

The fatigue and brain fog are a killer but I will just have to wait until my appt in August to hopefully start minimizing those issues. We are building a garage at our place up north and me snoozing the afternoon away makes me feel awful. I was barely able to help raise one of the walls for bracing. It brought immediate tears to my eyes because it was something I would have been able to do years ago. I think about weight lifting so regain some of my lost muscle but thinking about physical exertion even makes me tired. Too bad I'm totally serious.

But progress is progress so I will feel good about that!

[brandy]

Hi Deb,

I was wondering how you were doing.

I had some additional thoughts. Are you taking folic acid? Folic acid and B12 seem to help the body absorb iron. http://umm.edu/health/medical/altmed/su ... folic-acid
If you google iron, b12 and folic acid you'll come across some other studies on the web. The metafolin form of folic acid is more absorbable for us.

Are you able to tolerate canned or jarred sliced beets? Perhaps add some of them as a side with every meal.

Some users on this forum are taking iron supplements. Gabes, Ant and Tessa come to mind. I saw Tessa is taking flora something which is one of the ones that I could not tolerate.
My experience when I tested supplements was the testing never took me back to WD, but I got loose stools and cramping. There might be some prescription heme iron supplements (animal based) which might be better tolerated if you choose to try down the road---I'm not sure about this. I think they do iron transfusions for the women with the extremely heavy periods who do not respond to supplements. I think you are going about things in a good way, i.e. get off Entocort, stabilize and improve and think about supplements down the road.
As a reference I got of Entocort Jan 15th and didn't start experimenting with iron supplements until November. I had no idea my iron score of 18 in Feb was low until dr appmt in November but in the big picture, the reality is it is doubtful I could have tolerated supplements much before my tests in November. Again I know that others on this forum are taking iron supplements.

Hopefully you'll start feeling better just being off of Entocort. I found it pretty rough to be on and as more weeks passed I started to feel better just getting off of Entocort.

Have you read my metanx (and Tex's) threads? If you are interested search the forum for metanx. After Tex mentioned it for memory....and I'd had memory issues for a year----most noticeably showing up as inability to get around a keyboard and transposed letters----I tried the vitamin version of 1 pill of metanx. This was mid July of last year. Unexpectedly within 2 weeks the brain fog that I'd had for a year was also gone. Within 8 weeks I started getting jittery so I proportionally cut the dose back. Once the brain fog was gone it never came back. I've been down to regular rda's of the three vitamins now for awhile.

As of the last two months I think I'm.....finally.....in remission. The fatigue has finally mostly gone away. Looking back over the past 1-1/2 years I believe a lot of my brain/fatigue issues were tied to lack of or non absorption of b vitamins, low iron and women's hormone issues. I believe thyroid issues can cause fatigue and brain fog too but I'm not familiar with that. My situation wasn't thyroid hormones but rather low to no progesterone, testosterone, pregnenolone and dhea hormones.

It sounds like you have a good safe plan and direction. I'm guessing your Endo will do bloodwork. Perhaps have him retest your ferritin to see how it is trending and hopefully it is trending upward.

Mostly I wanted to give you encouragement. Last November I was in a pretty dark place and kind of overwhelmed by the iron thing but as of the last two months I'm pretty close to normal.

Wishing you continual healing, Brandy

[Gloria]

As of the last two months I think I'm.....finally.....in remission.

Terrific news, Brandy. You did it!!

Gloria

[tex]

Brandy,

Excellent post and congrats on reaching remission.

Tex

[Fish2575]

Brandy, Are you saying that you achieved remission after going off of Entocort? I am currently weaning off (Not in remission, but I get little glimpses) I think the Entocort is causing recurrent yeast infections and the yeast (which I have antibodies to) causes continued symptoms. I just decided I am getting off, have been weaning down for a couple of months. I would be greatly encouraged if you thought you were better after getting off! Susie

[DebE13]

Hey Brandy- That's great news! I'm happy to hear you are in a good place. Your encouragement helps so much because I visit those dark places frequently but I can look back and see that I've actually made progress. Sometimes I feel like I have a couple different personalities and my mood can flip just like a light switch. The more frustrating part is that it's always something. At first it was learning how to eat and accepting it, then it moved into the stomach pains, recovering from the effects of prednisone, eye pain, neck tension, debatable thyroid issues,and horrible fatigue & brain fog. I'm sure that like most of us, if I sat down and reallyt thought about it I could make lists of problems I've had so far. It's easy to become discouraged because I feel like once I get a handle on one problem, three more pop up. Although, knowing that seems to be the trend in MC, I just keep at it since giving up isn't an option. The analogy of peeling an onion keeps me focused on moving forward. I do wonder if when I was dx with MC in 2007 if I would have immediately started with a diet change, if I would have all the other autoimmune issues I have today even though all the doctors tell me I'm in excellent health. I'm positive I already know the answer but it is bittersweet. Although, knowing who I was six years ago, I most likely would have ignored the drastic change in diet because it was easier to take a pill than put forth effort. I'm not that person today, but I tend to end up on the more difficult path in most things I do.

Today is day 20 of being off Entocort and I continue to keep my fingers crossed. I still have D but it isn't anything different than when I was taking it at higher doses. My hemorrhoids have gotten considerably worse which is always a treat. I've had them for two years now where they never go away. I'm assuming the entocort helped keep them at a nuisance level instead of the constant marbles up my but feeling. Oh well, always something. Haha, such an attractive thing to say. I seem to actually feel worse since I've stopped entocort but I don't believe it has anything to do with my fatigue and brain fog. I am very pleased that I've made it this far since it has taken such a long time to get off of it. I just need to be even more aware of what I'm eating so I don't cause a set back.

I'm still waiting for my appt. to see my endo but it's still far off. I've decided not to start anything new until then. I was told to start taking calcium supplements and switch to a multi vitamin but I'll wait for now. Metanx sounds like a good idea but I doubt if I'd be able to get a doctor to give me a RX for it. I will bring it up. I called yesterday and was able to move my appt up to July 26th which still seems like forever away. I was a bit frustrated since I was supposed to be on the cancellation list and thought I'd get a call. It does benefit to keep calling weekly.

I've been eating more spinach and love beets so hopefully it will help. Until then I will try to be patient.

Thanks for your update- it always keeps me motivated when I see other MCers make progress. Take care, Brandy.

[JFR]

Deb,

Metanx is just a combination of b vitamins in a certain ratio. You can approximate this on your own by taking those vitamins yourself, no prescription needed. It's what I do. These are the ingredients in Metanx:

Each Metanx® capsule contains:
L-methylfolate Calcium (as Metafolin®) 3mg
Pyridoxal 5′-phosphate 35mg
Methylcobalamin 2mg

Which translates to:
Folate
Vitamin b6
Vitamin b12

Jean

[tex]

IMO it's important to recognize that those are the active forms of those 3 vitamins. That means that even if the body has problems making certain conversions (which can be true not only for provitamins but also for prodrugs), the active vitamins will still be available for the body to utilize. IMO, this is important for many of us, because MC can throw a monkey wrench into such normal body processes, to further limit our ability to utilize certain vitamins.

Obviously, not everyone needs the active forms of those vitamins, but one thing is for sure — the active form will work for everyone, whereas the inactive form will not work as well for some of us.

Tex

[DebE13]

Hmmm, I've read your comment several times and it isn't quite sinking in. How do you know what's active and what's not? I was told to take a B complex vitamin or just a plain multi vitamin. I'm finishing my bottle of B12 first but don't know what one to choose or if it matters much as long as its allergan free.

[JFR]

These are the active forms of the vitamins:

B6: Pyridoxal 5'-phosphate

Folate: Metfolin brand, or “5-methyltetrahydrofolate” or “5-MTHF”

B12: methylcobalamin

Go to a site like IHerb or Vitacost and search for these terms and you will find what you need. Buying allergen free is always important but if you have inflammation and don't take the active form of the vitamin you are likely not to absorb it. At least that's my understanding of it all.

Jean

[tex]

The inactive form of vitamin B-12 for example, is cyanocobalamin. If you look at the cheaper options for vitamin B-12, and read the details of the ingredient list, you will see that the B-12 is in the form of cyanocobalamin (not methylcobalamin) Cyanocobalamin is much cheaper than the active form (methylcomalamin).

The difference between the active form and the inactive form is that the body cannot utilize the inactive form until it is converted into the active form. When the GI system is malfunctioning, it's possible that it may not be able to properly convert the inactive form into the active form, and when that happens we can't get any benefit from the inactive form.

As a general rule, all of the low-priced versions of vitamins tend to be in an inactive form. The active forms are much more expensive (and much more beneficial).

But when our digestive system is performing properly, then the inactive forms should work just fine, (though we may have to take more of them, because they are not as absorbable as the active forms).

Tex

[MBombardier]

Deb, I am in the process of getting some answers as to why my thyroid supplement is not working for me like it used to. One of the things being checked is iron. In my opinion, if your doctor has only checked your iron and not ferritin, TIBC, UIBC and percent saturation, then he is not getting a complete picture of your iron levels. You may be seriously low on iron, needing shots, and/or the inflammation in your gut may be influencing your iron results. I don't know--I am just in the beginning stages of researching this myself, but getting my full iron panel lab results was very interesting, to say the least.

[DebE13]

Thanks Jean and Tex- again I learned something new today. It gets overwhelming looking at all the different brands and variations of the same supplement. The doctors aren't too helpful either. Big surprise.

Marliss- I meet with my endo in about two weeks so I will definitely bring that up. I'm up for a challenge in trying to convince him to treat me. Although I must be making progress because about a year ago my last doctor told me an endo wouldn't touch me because my numbers are normal. I am 1mm away from requiring a biopsy for a nodule on my thyroid. I'm not to keen on the wait plan to see if it gets bigger but I'm again in unfamiliar territory so I'm not sure how far to push it. My new family doc referred me so hopefully things will keep moving forward.