Help needed - flare up or anemia

[Sarah84]

Hi All,

I am just after a bit of advice. I was diagnosed Dec 2011 and became very steroid dependent so the consultant decided it was best for me to have my TI out. I had the operation in June and have been steadily recovering but things never actually got completely better.

I am having some issues at the moment and I am not sure if its flare up related or something else. I have had a number of blood tests this week and the results are

Serum vitamin B12 -379ng/L
Serum Iron - 8.3umol/L
Serum Folate - 2.5 ug/L
MCV - 83 fL
MCH - 27.5 pg

I had others but they all seem to have come back fine. After the recent ones I have been told to go back for a repeat ref blood cell folate test but that my B12 is within the normal range.

The symptoms I am having at the moment are

Stomach cramps
Changeable bowels (needing to go at least 7 or 8 times a day)
Tiredness
Whooshing/Ringing in my ear

I see my doctor on Monday and the consultant on Thursday and what I am really wondering is whether this are signs of a flare up or whether I should be pushing for something for anemia.

Any advice is greatly appreciated. I am feeling a like I should be trying to get something sorted before I end up like I was this time last year.

Thanks again :ysmile:

 

[CrohnsChicago]

Your iron levels should definitely be addressed with your doctor.

I can say that the b12 level while within range is definitely appears to be in the lower range of things. My B12 was 329 and I feel better (more energy less foggy brain) after I started receiving my monthly B12 injections. B12 symptoms can very easily mimic an iron deficiency and low B12 can directly affect your overall ability to store iron in the body. B12 is absorbed in the TI so if you have had it removed, you definitely want to have your levels regularly monitored.

And since you did somewhat recently have surgery, definitely ask your doctor what the possibility is that you could be flaring, or if this is just the new "norm" for you with regards to bathroom habits. I am leaning a bit towards flaring symptoms but I feel the surgery aspect definitely adds a little bit extra to your situation.

I hope you and your doctor are able to figure things out and you at least can get your vitamin levels back up to a good place.

:hug:

 

[Sarah84]

Thanks for the advice

I am hoping I will have some answers by the end of the week, my consultant is usually pretty good. I will let you know how I get on.

 

[Adam1971]

Hi there. I had the same surgery recently and the doc's have been monitoring my below normal red blodd count. I hope you'll share what you learn. I feel ok, but I too am waiting to see what the "new normal" will be.

Best of luck.

 

[Sarah84]

Just got back from the doctors. She said she thinks I need to go on immune system suppressants and B12 but that it's not in her remit to prescribe them so I should speak to my consultant about that.

She did give me iron and folic acid tablets and some buscopan for the cramps and some sudacream for the stinging pain. Other than that she just said to try and keep comfortable til I see the consultant Thursday.

Hopefully I can give you some more information on Thursday

 

[Jennifer]

Sarah84 did they say what immune suppressant specifically?

As for the B12, my GI doesn't do injections at his office so I have to have them done with my GP. At least the GP I was seeing at the time took my word for it that my GI said they had to do it. Mine has also been in the 300 range which is a tad low. Having it around 500 or higher is ideal.

I know Afidz knows more about anemia than I (symptom wise) so I'll give her a tag.

 

[Sarah84]

Hiya,

I have seen my consultant today and she has put me on Budesonide (I had bad reactions to pred) for 3 months. In the meantime she wants me to have a blood test to go on Azathioprine. She said something about testing enzymes but not really sure what she was on about.

I am hoping these steroids don't give me the same trouble pred did but we shall see

Oh, she wouldn't give me B12 as she said its okay at the moment and that if ti goes down and I need it at a later date it would be less effective.

Thanks for the replies

 

[CrohnsChicago]

She probably means getting a TPMT test which doctors like to do before putting you on Azathioprine to determine if your body will respond well and properly break down the medication without any potential complications.

It will also help them to determine what your starting dosage will be and how routinely they will give you blood tests to monitor your reaction to the medication.

If you click on the blue link at the start of my post you will find more info on this particular test. I think it is a good test to have done so that you are aware of any potential risks before even starting the medication.