My now retired neurologist was adament on treating my very low ferritin. For reference it was 7. Diet was not working. He gave me an iron infusion (he knew iron pills could have awful side effects). Then he retired & I changed neurologists.
I never knew whether my ferritin got back to normal, nor why it was low in the first place.
My new neurologist, after I asked, did order a CBC. But he refuses to treat me for my ferritin if it is low, saying he only does that for sleep disorders.
He told me to get it treated by my GP or who ever was treating it before (my retired neurologist)
My GP was VERY awful when I approached them about the low b12 & iron last year. They said” Oh 200 b12 is in the normal range, we don’t need to treat it. Oh, now your ferritin is 11, its “normal”. For reference the Range is 10-300 for ferritin. And “normal range” is very different from ideal range. Considering I was already dealing with fatigue issues, my best option would be to keep the ferritin & b12 as high as they could be, to prevent the fatigue from getting worse. But my GP didn’t understand that at all.
Who should I go to, to treat my low iron? Hematology? It will take me weeks to get in to see a new dr. I can’t exactly fire my GP right now either. I feel stuck.
I just know my former neurologist would be pissed right now lol if he knew this was happening.
My mom is helping me advocate for me, frustratingly they only take my mom seriously no matter how assertive I act. I’m only 20 maybe that’s why.
So yeah, I’m so glad my neurologist is getting my iron tested, but annoyed that he refuses to treat it.
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Purplegirl2
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ferritin is one measure of iron status - it is generally a good indicator but there have been instances of people who have suffered iron toxicity because ferritin was treated without checking iron status through an iron panel. Have you had a full iron panel done?
I also had low folate and ferritin with B12 deficiency (and now get vitamin D on prescription because osteoporosis of the spine found - so really get that checked too if not already done).
My ferritin (range: 13-150 ug/L) was up and down for a couple of years and would be anywhere from 36 - 46 if not being supplemented on top of multivitamin and mineral tablet daily.
My folate (range: 4.6-18.7 ug/L) was also up and down for a couple of years and would be between 5.5 - 6.6 if not being supplemented on top of multivitamin and mineral daily.
Despite B12 injections, my gums were still bleeding and my hair was falling out: my GP thought this was more likely folate or ferritin - she wanted ferritin to get above 60. My Oral Medicine consultant, treating my angular cheilitis (split, sore and bleeding corners of mouth), wanted my ferritin as high as 80.
Finally, I'm there: blood tests in Nov 2020 were the best I've had, and the first time I've managed to get ferritin to over 80 (82, don't mean to brag !) but this all started in 2016.
I had assumed that these problems were just more B12 deficiency symptoms, but years of frequent B12 injections have certainly not rid me of everything that was wrong.
Currently gums okay, mouth fine, but hair falling out quite a lot recently, so back on the Floradix, as really can't be bothered to ring GP at the moment or have another blood test . We'll see.
It is important that someone from the medical profession is monitoring your folate and ferritin blood test results as, unlike B12, a high level can also make you ill. No chance of that with you for a good while !
B12, once injections have started, does not need checking - unless you are responding poorly to injections, or you are on tablets and GP suspects you aren't taking them. If you aren't responding well to B12 injections , I would expect a GP to also be testing for MMA level. A high level of B12 and a high level of MMA would be a good indicator that there is some functional problem. It is rare but this happened to me: you need a good primary care professional to keep an eye on you and work out what you need.
My original B12 result was 196 ng/L , the range started at 197ng/L.
Lucky ?
Yes, but at the time I felt like I was slowly dying.
My mum wanted to speak to the doctor for me - and I'm 62 !!
That is fantastic to hear that your ferritin was finally at a good level. It seems like iron takes ages to increase.
4 years is an awfully long time. I’m glad you did finally get a handle on it.
I have had hair loss, for at least 2 years. I suspect it is something to do with ferritin.
I did actually have high folate, which I was not suspecting. I don’t have my health info available yet but I was told it was greater than 24? I don’t know what the units are.
At the time I thought that was great. But now should I be concerned if it is high?
You’re right, I need a good GP to help me manage this.
I hope I can find one very soon.
All my symptoms have made it difficult to do my best in uni.
Luckily I am taking a lighter course load currently.
The fatigue is awful.
My neurologist did check my MMA levels. Soon I get to access my records and see what exactly the value was.
Thanks again for your help, I was so lost before I found this server, you all have been even more of a help than my Drs.
Because my MMA was "raised" and not "high", I was eventually told after 5 tests (mainly by haematologists) that this was "probably my normal" -but in fact it wasn't. After three years, luckily the DNA people tested me one last time -and it had dropped down into mid-range. I think that frequent B12 injections stopped the level ever getting to "high".
Ideally, your MMA level would be checked before B12 injections given, but not all hospital labs carry out this test and I believe it is expensive. It does however help in cases where B12 deficiency is suspected but a secondary confirmatory test is required.
MMA should return to normal fairly quickly, certainly after the loading dose of 6 B12 injections has been administered.
The fatigue: I was sleeping for 14 or 15 hours a day and was still tired, often needing a mid-afternoon nap. I now sleep for 8 or 9 hours- just like a normal person !!
My ferritin level also dipped to 29 in December 2018. My recent blood test shows its back to 61 . It bobbed around in the 49's fie a long time. I'm keeping uo the supplements. My fikate went above 26 and was told it wadnrva problem by pleased it now 14 since I reduced folic acid. (I was only taking 400mch for a short while daily. It was at 9 .
So bloods looking good.Toom a long time also!!
Unfortunately feeling absolutely dreadful at present.
Hope fully body will catch up and feel what the bloods are saying ??
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