Lab results

[Tiff]

Hey everyone.  Recent lab work has my iron going from 110 three months ago to 15 in early August.  Normal rages are 40-150.  I have long been anemic, but my iron levels have been normal, although it looks like a wide fluxuation.  My doc prescribed iron pills.  I am confused by this major change.  Any thoughts welcome.  I have not researched it yet myself.  Thought I would start (as I often do) with my favorite resource!  🙂

[Trudi]

When you say iron, do you mean your Ferritin level?  Mine went from a low of 11 to a high of 266; my test reference range was 10-160.  My doctor says it is a sign of inflammation (it can also be a sign of hemochromatosis if too high); mine is now down to 91, but he wants it down to 20.

I am anemic, but it is based on my hemoglobin and hematocrit readings.

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Lynne G.SD]

Hi Tiff;
    Are you sure that reading is correct.That sounds terribly”off” I do know that micos feed on iron and that is why so many of us are anemic  evenseveral years before diagnosis.I always used to give blood because I am O positive but about 4 years before coming down with SD the Red Cross would not take my blood due to lack of iron.I just thought I was tired and that might be the reason.Now I know

[linda]

That's such a drastic drop that I'm surprised your doctor didn't have the test repeated. I would almost suspect a lab error. Have you had a big change in your level of energy?

[Tiff]

The lab test just says “iron,” but I do know I have had ferritin done in the past.  I was originally sent to this doc due to anemia.  She is an oncologist/hemotologist, so she has been really on top of my blood tests for the past year and a half.  Nothing has been off except my hemoglobulin/hemocrit like you mentioned, Trudi.  Well, and of course the RF and CCP.  My CRP is actually quite low, and my SED rate as well.  Interestingly, this lab has a few other blood tests off this time, including a slightly high white blood count.  I'm not happy about new issues right in the middle of all the changes going down for me.

I wondered about a lab error as well since I have seen that before.  I have felt terrible in general, more so than usual, and did find those fibroids, so maybe my heavier cycles are to blame, but I don't think it has been that drastic of a change.

That just seems like a gigantic drop.  I'll let you all know if I find out anything interesting.  The next 3 months will be critical for me.

Thanks!

[Lizz]

Tiff – I'm anemic too and it doesn't appear I'm bleeding anywhere. What iron pills did they give you? I've been taking slo-fe but I clearly can't absorb it, hopefully, that won't be your problem,too. I know how you feel-it's bad enough having the RA, but now you have something else to deal with on top of it. I hope you get to the bottom of it soon…all the best!

[Tiff]

Hi Lizz,

They gave me a prescription iron pill, so I don't know much about it.  My insurance refused to pay, but it was only $4 (glad they have their priorities straight).  That is all I know.  I worry that I will not absorb any of it, too.  Several docs have asked me if I eat meat.  Yes, I do, so I am obviously not absorbing it very well from food.  But then again, it was fine 3 months ago, so perhaps this number varies a lot or it is an error.  I will be curious to see what it does.

I've been off the MP since right after the 4th of July, and I have been daily dosing the Mino (100mg/day) with a 250mg Zith every 10 days.  I have picked up a lot of supplements in that time frame, omega-3, multi, calcium, magnesium, glucosamine/chondroitin, milk thistle, turmeric, plus my probiotic and some fresh ground flax seed daily.  I was doing pretty much the same or a little better than while on the MP, but this month since starting the BC pill for fibroids, I have felt TERRIBLE.  Besides flaring all over, I have been nauseous and extremely irritable and generally wiped out.  On the plus side (if you can call it that), I did avoid the bad cramps this time.  I will give the BC pill 2 more months at most, and if I still have nausea/moodiness then that will have to go.  Maybe it will level out.

On Monday I started the Orencia infusion.  No idea what to expect, but I woke the next morning barely able to move and slept until 3pm.  Great.  That will take a couple of months to kick in, so they say.  Depressing all around.  :crying:

[m.]

I'd consider doing a CBC along with Serum Iron AND Ferritin.

Just serum iron is not enough information. For example, is your serum iron (iron in circulation) tanking while ferritin (storage iron) is skyrocketing? (This can be an infection pattern)

Or, are both tanking? (possible hidden blood loss).

I had some good numbers, serum iron and ferritin, then both began to slide downwards. I test about every 2 months—CBC, serum iron, ferritin.

The slide became worrisome as I became anemic, again, and the numbers were seriously low. I was so tired. And cold. No energy.

My MD and I looked over my tests, and I thought the slide corresponded to my rather generous use of aspirin for joint pain. We talked about the possibility of testing for occult blood in stool or getting scoped.

I don't have good insurance, and essentially pay out of pocket for everything. I opted for dropping the aspirin right away, and taking Gentle Iron pills (Solgar?). My numbers have steadily improved since then. Whew.
We're guessing my stomach was bleeding.

So, how does your MD explain the iron drop? Was loss of blood discussed?

HTH

[Tiff]

m.,

One of the frustrating things that keeps happening to me is that I ask for a copy of the blood test results as I am leaving, so I see it after the doctor visit, and I don't get to ask what is up.  She did ask me if I was taking an iron supplement, and I told her that I am sure it is included in my multi, but I assumed that was just another reference to the anemia in general.  She then prescribed the iron, and I got that from the nurse after the appointment.  It was only later I saw the labs myself and realized I had such a low iron count.  I also saw the slighly elevated white cell count, which does not make me happy.  That has never happened.  I feel all out of whack.

You can be sure I'll ask about the whole iron issue the next time I see her (including ferritin levels).  Since she is an hemotologist, I have been checked extensively before with CBC and a lot of other tests done every 3 months.  I even had a colonoscopy, so I had that covered.  I don't want to do that again!!!

[m.]

Hey Tiff, I'm sure this doctor is not inexpensive, even if insurance is covering it.
Why not call and request she call you back? Let her know how concerned about that iron score you are, and what are the possible explanations? Surely, “lack of taking iron supplements” isn't an answer!

Or, if you have a primary care MD, call him/her and go over the results.

Life is way too short to feel so poorly!

And like it or not, we often have to advocate for ourselves. Who is going to care about us more than me, myself, and I? Right?

I think we also have to make sure our MDs are not just “treating the symptoms”.

Go Tiff! 🙂

[lynnie_sydney]

m. wrote

the slide corresponded to my rather generous use of aspirin for joint pain……….We're guessing my stomach was bleeding.

m. – I hope that you have found another type of pain medication to help you. Aspirin is pure salicylate and many NSAIDS are also salicylate-based, so they will aggravate any bleeding. Hopefully your MD has been able to suggest something else for you.

Salicylates in medication

The best known salicylate is aspirin (acetylsalicylic acid), which was originally extracted from willow bark. When introduced more than 100 years ago, aspirin was regarded as a completely safe wonder drug but by now numerous side effects have been documented (Azer 2006):

? gastrointestinal effects including gastric irritation, bleeding, nausea and vomiting…..

http://www.fedupwithfoodadditives.info/factsheets/Factsalicylates2.htm

[align=left]If bleeding in the stomach was indeed your problem, then it may also be a good idea to limit the salicylates in your food. The fact sheet in the link above goes into some detail about this also. Lynnie[/align]
 

 

 

 

 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

[user=30]lynnie_sydney[/user] wrote:

Salicylates in medication

The best known salicylate is aspirin (acetylsalicylic acid), which was originally extracted from willow bark. When introduced more than 100 years ago, aspirin was regarded as a completely safe wonder drug but by now numerous side effects have been documented (Azer 2006):

? gastrointestinal effects including gastric irritation, bleeding, nausea and vomiting…..

http://www.fedupwithfoodadditives.info/factsheets/Factsalicylates2.htm

When we built our house 7 years I ago I did all of the landscaping myself, including building a beautiful woodland garden (now dubbed the tick garden).  One of the trees I planted in a soggy spot was a willow, but my herds of dear quickly stripped it bare and killed the tree. :X Guess they had headaches.  🙂

Take care…..kim

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[lynnie_sydney]

You crack me up Kim:roll-laugh: Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[m.]

Thanks Lynnie,

When I dropped the aspirin last winter, much to my surprise, I discovered I felt fine without it. Lucky!

My bloodwork has steadily improved since then, but there have been some bumps in the road due to irregular, heavy menstrual bleeding.

I'm working on that now. It's always something, isn't it?

[Tiff]

[user=732]m.[/user] wrote:

Thanks Lynnie,

When I dropped the aspirin last winter, much to my surprise, I discovered I felt fine without it. Lucky!

My bloodwork has steadily improved since then, but there have been some bumps in the road due to irregular, heavy menstrual bleeding.

I'm working on that now. It's always something, isn't it?

Yes, it is always something more!  :headbang:

I'm dealing with that as well, but I really don't think it is heavy enough to account for this.  Cramps have been more my problem.

I am going to see my doc again in 2 weeks for another Orencia infusion, so I will definitely ask her then.  I would call if this appt. wasn't so close though, because, yes, they do need to address these things, and they are often so busy that they won't unless you take them to task.  Being a patient is hard work with no benefits!  :blush:

Lynnie, what are your thoughts on ultracet?  Seems I read a long time ago that “tylenol” was a bad choice, too, but I can't recall exactly why.  I didn't worry about it much at the time because taking OTC tylenol was a joke for palindromic pain (as you well know), but now this ultracet does help at times, and I suspect it would be helpful for the cramps if those continue (hopefully they won't on the BC pill).  My rheumy prescribed this while I wait to see him again and while I wait for the infusions to kick in.  I try to alternate the meds to lessen the downside to them all.

Like dancing with the devil all the time.

[Author]

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