Confused about Ferritin..fbirder??

[Milescircus]

Had another Iron infusion and B12 injection yesterday... I do have Pernicious Anemia/AMGA and older women in the room yesterday were talking about Hemaglobin levels after the Dr, who is wonderful I will say, came in and was saying it was his job to get everyone up to 13.0... anyway, got me thinking about my labs this morning so I looked and mine are pretty good actually at 9 and 12 but I looked at the last labs, I only recently started this as it was kind of an accidental discovery but my Ferritin level seems above the normal high but marked low? And I’m definitely anemic. Can anyone explain this to me? My B12 level was 250 and then 381 ferritin 155 then 213, folate <20.0, tibc 246 and 232, 53 and 36, I also have severe REstless Leg Syndrome so I have to try to keep my iron over 40 so he switched me to children’s chewable vitamins because they have a different type of iron digested differently/more easily and sublingual B12 since I can’t absorb b12 in another form. Anyone understand the ferritin or maybe it’s the combination of the labs? I don’t know!

[JoRR]

If you can't absorb B12 then sublinguals are unlikely to be helping much. The research suggests that sublinguals or patches (despite being thought by some to be able to get B12 absorbed when normal oral supplements can't) simply can't get enough B12 into your system. Injections are the only reliable way to supplement unless it is proven that your deficiency is dietary. I would guess you are still functionally deficient in B12. (If you are not able to absorb B12 normally, oral supplementation raises test levels without actually treating the deficiency). If you have insufficient B12 available, your body cannot use the ferritin and folate to make good red blood cells because all three are needed. So your ferritin and folate gets stockpiled and test levels rise.

[Milescircus in reply to JoRR]

So what you’re saying is maybe taking B12 sublingually may be just making my levels look good on paper and not helping me at all? Because it’s not helping me at all. I’m only getting an injection monthly and he asked me how long it was lasting and I told him I couldn’t tell it was helping and he said if I wanted I could come back in two weeks for another one. I’m not a whiner at all.. I go all day with no choice but I’m just tired. If I didn’t just go I’d sleep.

[JoRR in reply to Milescircus]

Yes, that's what I'm saying. I understand it can often take a long time for injections to start to bring an improvement, and often people feel worse before they feel better. My own experience in brief - 18 months ago I went to the doctor feeling tired, among other things. Tests showed up low B12 (114 I think). I was given 6 injections over 2 weeks. The doctor asked if they made a difference. I honestly couldn't tell. The doctor said it probably wasn't worth carrying on the injections then, and told me to take a multivitamin and some extra vit D. A year on I was feeling worse, very low emotionally, putting off going back because I didn't want to get sent away with antidepressants as I didn't feel that was the root problem. I had pretty much forgotten about the B12, and hadn't read up on it at the time. In the end I went back (my marriage was suffering, and it seemed that I had to do something) Different doctor took one look at my results from a year back and asked why I wasn't still having injections. Anyway, repeat bloods showed B12 was only 148 despite the multivitamins, and ferritin was pretty much on the very bottom of a massive range. Another loading dose of 6 over 2 weeks, and iron supplements, and this time I did some reading to learn more. I read that injections need supporting with co-factors, especially folate and iron, so I added in folate supplements. The injections then made a huge difference (but by this time I was getting clear neuro symptoms - awful dizziness, loss of motor skills, foggy brain, tinnitus) Symptoms were not gone by the second week so I managed to argue for another three injections. 5 days after I finished those I was going downhill again, but the doctor wouldn't prescribe more, so started self injecting. I'm still injecting every other day, and have done 18 injections to date. I've also since been diagnosed slightly hypothyroid, now being treated with thyroxin. I'm much better, still find it easy to overdo it though, and sometimes feel a bit foggy and find it hard to concentrate, and tinnitus comes back sometimes. So I plan to carry on every other day injections for the time being, though I will probably try reducing a bit at some point. Very many people find that the injections the doctors will prescribe simply aren't sufficient to have any quality of life. If they will give you more injections, accept them with open arms (or should I say, relaxed and floppy ones to make it more comfortable!!) It can do you no harm - there is no overdose.

[Milescircus in reply to JoRR]

Wow. I didn’t realize I could purchase and self inject? I am hypothyroid, for about 12 years and actually Hashimoto’s thyroiditis with a multi modular thyroid for about 2 years when I moved and routine labs showed my tsh was 16.0 and antibodies were 809 when he found a module on my right side. They’re just watching as thyroid ultrasounds are ok for now... funny how all these things are connected.. funny how b12 deficiency can cause neuro symptoms as well.. not sure if this could be a cause but I flew to Arkansas to pick up my son and his family and we left to make the 17 hour drive here and 20 min into the drive I told them I had to pull over, I admitted something was just not right and I couldn’t drive. I was not really dizzy? But maybe foggy? I don’t know there was maybe like a halo/ring on my distant vision and it was almost blurry? I really have no REAL way to describe it.. lol. I told them it was just not right... almost felt like I was looking back at myself??? And I know THAT must sound crazy... anyhow my son said maybe we should take you to a hospital and I said no. It wasn’t low blood sugar I know, it went away after awhile and I drove later in the trip.... it didn’t happen again. I went for an EGD follow up later that week and I mentioned it to her and she said I may have been having a mini stroke?? And that if it EVER happens again to go straight to the hospital not to make an appt with my primary care dr. Then I did recall that for a couple days prior to that my left hand had been numb and tingly but nothing else and certainly no pain. Just crazy.

[JoRR in reply to Milescircus]

That sounds scary. A few years ago I started getting what I originally could only describe as a 'brain wave' - like something washed through my brain. It only happened very occasionally, and briefly, and didn't seem to bear any relation to anything I was doing. Then I had one that lasted maybe a couple of seconds, enough to make me stop walking and reach out for something to steady myself. I started to log them and mentioned them to the doctor. But she said it was probably nothing. Now I think that was a minor version of the B12 dizziness, which I would describe as feeling like my whole brain was being stirred around. Though it never made me lose my balance, it was a horrid feeling. And yes, I would say it somehow disturbed my vision - I was seeing but not seeing. I hardly get it at all now with frequent injections.

The reason there are neuro symptoms with B12 deficiency is because the covering on the nerves begins to break down and they short circuit.

On self injecting - I am in the UK. Lots of us can't get doctors to prescribe enough. We cannot buy injectable B12 over the counter here, so lots of us buy it from Germany, where it is available without prescription, and get it mailed over. I guess you're in the US - I'm not sure of the situation there. But it costs very little - maybe £1 a shot including the syringe and needle. Different countries seem to prefer different forms of B12 - in the UK most people have hydroxocobalamin, but I think I remember that the usual form in the US is cyanocobalamin, which I think tends to need injecting more frequently as it doesn't stay in the body as long. But you would have to check that out.

[Milescircus in reply to JoRR]

Thanks! I’ll look into it!

[Gambit62 Administrator]

Milescircus - please could you give the exact results including units and ranges.

Ferritin is a protein that binds to iron to allow it to be used by the body. It is an indirect measure of iron status - but quite a good one.

Restless legs syndrome is a symptom of low iron. It is also a symptom of B12 deficiency and other conditions.

This article includes a table giving a guide to interpreting results of an iron panel including ferritin

labtestsonline.org/tests/fe...

[Milescircus in reply to Gambit62]

Sure. Thank you. My first labs were in March and they were as follows

Ferritin 155* (15-150ng/mL)

TIBC 246* (250-450 ugh/dL) below low Normal

Iron 53 (27-159ug/dL)

Iron Saturation 22%. (15-55%)

Hemoglobin 9.2. (11.1-15.9g/dL)

Hematocrit 39.8% (34.0-46.6%)

Retic count 0.9% (0.6-2.6%)

Follow up labs were after 5 iron infusions. The labs were in May. I only started the injections after the follow up labs.

Ferritin 213* (15-150 no/mL)

TIBC 232* (250-450ug/dL) below low normal

Iron (27-159 ug/dL)

Iron Saturation 16 (15-55%)

Hematocrit 39.7 34.0-46.6%)

Hemoglobin 12. (11.1-15.9g/dL)

B12 381 (232-1245) he marked Low and said he wanted to be in the 2000’s.

Folate >20.0 (>20.0)

Retic Count 0.7 (0.62.6%)

Also why’s he doing a Retic count? Or what is that specifically for?

[Gambit62 Administrator in reply to Milescircus]

sorry - realised that I didn't post the link to the article that I meant to post - original response has been amended to include it.

The combination that you have would seem to imply chronic illness.

This is an article on Retic Count - count of new red blood cells

labtestsonline.org/tests/re...

so, looking for bone marrow function - ie to looking for something to indicate what is going on.

The injections will have been to get your B12 levels up. High dose oral/sublingual can be effective for maintaining levels once they are high (and they will be astronomic even after one injection) but they don't work for everyone so you may need injections more frequently.