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Hi Payton, Thank you for your reply. Can really understand the fatigue. Something came up on the blood test I had done recently which showed an abnormal result to do with my autoimmune system. The dr said it can be abnormal with some people and re-assured me that it should be 'nothing to worry about' and it was under further investigation. There is no history of thyroid problems in my family. The only thing is anemia on my mother's side. My mum now has pernicious anemia. My B12 was checked and was in normal range. I am worried as the muscle spasms/twitches are the most debilitating at the moment.:(

[QUOTE=payton123;4303217]My numbers were the same as yours, except Ferritin was a 5. I've been on carbonyl iron for about 6 weeks now and my last blood draw showed all the numbers are rising. My Ferritin is at a 14 now.

With me, I was extremely fatigued (not necessarily sleepy tired but worn out and my body felt heavy). I was losing a ton of hair for 6+ months, like 500-600 a day. I was really light headed/dizzy, some headaches, my heart would beat really hard, and I had a hard time catching my breath (even if I was just talking I would run out of air).

I'm just now starting to feel better, most of the symptoms have gone away, with the exception of the fatigue, which comes and goes now. When it does come it's brutal and reminds me of how bad I felt for so long. The hairloss has lightened up but is still more than what's normal for me.

I should mention my thyroid medication needed to be raised also, it was too low. That also adds to the fatigue. I most recently did an adrenal test and will have the results next week, which can contribute to the fatigue too.

I hope you are feeling better soon - I know this can be a long journey! I'm right there with you! Good Luck! Payton[/QUOTE]
[QUOTE=Clare1975;4302709]Hi, I have been feeling tired with aching muscles/cramps/twitches. I had my blood tested recently and results came back with blood count just over 11 and ferritin level at 4. The dr said I was mildly anemic. My hair has lost its condition being very dry and I have a sore mouth with sore corners. I have been on ferrous fumerate for 2 weeks with no improvement yet. Just wondering what other folk are going through. :wave:[/QUOTE]

I would check your B12.

I have had these symptoms for years... I didnt think much of it. I knew I had low B12 but not deficient...so I took supplements whenever I remembered to. until I kept getting sores at the side of my mouth... then I got a sore throat that would NOT go away. I went to my doc who said i had an ULCER on my tonsil! Ouch! She checked my b12... well I was deficient... Now I get shots monthly. At first it was weekly. I haven't had any mouth sores since.
My level at that time was 83. My doc said that deficiency starts at 107, and 133 and over is considered normal.

All was fine, except i was still fatigued. Ive been losing hair for YEARS so I didn't think that was abnormal. She checked my Ferratin and it was 8. I've been taking Ferrous Gluconate since April. My doc recommened to take it on an EMPTY stomach 3x a day. I tried, though it's difficult... I must eat with it because it feels like it's going to burn a hole in my stomach.. and now.. months later my level is at 17.

It might take forever to have a normal iron level, at this rate. however my CBC was normal last time we checked it (probably back in feb/march), aside from the very low ferratin level. Weird?

I think I should mention that I am not vegan/vegetarian. I eat red meat, chicken, fish, fortified cereals. I'm 26 and a healthy weight, not overweight. I try to exercise but as you know, being iron (and previously b12) deficient makes you kind of tired so I haven't been running as much as I used to. I was tested for celiac too, and the test was negative.
Hi, thank you both for your replies. I was a vegetarian for about 20 years until recently. The dr has had a look at my B12 level and it is apparently within the normal range. My periods are heavy for the first couple of days and then settle down. My symptoms first started when I was training for a 3 mile race. My left leg began to get tired easily and I felt a slight tremble in it. Since then I have had numbness in my limbs, lips, face and muscle spasms throughout my body. All seem to come and go throughout the day and just leave me feeling miserable.
It's been said before here on these boards, but it bears repeating. It takes 3 months to produce new good healthy red blood cells. So if you start taking iron pills, it will take 3 months to start feeling better.

I have hemolytic anemia which causes my B12 to go low. When I was dxed, I was having muscle spasms so bad that I thought I had a bad disease. It was awful - major twitches. My B12 level was 386. Most drs would consider 386 normal and dismiss the B12. Hema put me on B12 shots and the twitches went away in a couple of weeks. Many people get terrible side effects with B12 levels below 500.

My advice would be to get copies of your CBC results, don't just be satisfied with "Oh, your levels are fine." They may be fine by the numbers they use, but not fine for you.
[QUOTE=japlopper;4309757]It's been said before here on these boards, but it bears repeating. It takes 3 months to produce new good healthy red blood cells. So if you start taking iron pills, it will take 3 months to start feeling better.

I have hemolytic anemia which causes my B12 to go low. When I was dxed, I was having muscle spasms so bad that I thought I had a bad disease. It was awful - major twitches. My B12 level was 386. Most drs would consider 386 normal and dismiss the B12. Hema put me on B12 shots and the twitches went away in a couple of weeks. Many people get terrible side effects with B12 levels below 500.

My advice would be to get copies of your CBC results, don't just be satisfied with "Oh, your levels are fine." They may be fine by the numbers they use, but not fine for you.[/QUOTE]

Hi, thank you for the interesting reply. The dr quickly went through the blood test results on a computer screen and it was difficult to see the results. I am trying to see the dr again but she is away for the next couple of weeks. The numbness/muscle spasms which come and go are scaring me.:( Everyday is painful.

Hope you are doing ok now.

Clare x
[QUOTE=japlopper;4309757]It's been said before here on these boards, but it bears repeating. It takes 3 months to produce new good healthy red blood cells. So if you start taking iron pills, it will take 3 months to start feeling better.

I have hemolytic anemia which causes my B12 to go low. When I was dxed, I was having muscle spasms so bad that I thought I had a bad disease. It was awful - major twitches. My B12 level was 386. Most drs would consider 386 normal and dismiss the B12. Hema put me on B12 shots and the twitches went away in a couple of weeks. Many people get terrible side effects with B12 levels below 500.

My advice would be to get copies of your CBC results, don't just be satisfied with "Oh, your levels are fine." They may be fine by the numbers they use, but not fine for you.[/QUOTE]


wow.. mine was reading at 80... my symptoms were only ulcers in the mouth and fatigue. my level is now at around 300 i think and i am feeling much better... though still tired with iron level of 8.
Clare,

Iíve had my B12 checked and it was really high (1,500). However, my Vitamin D was super low but is back to normal now. Vitamin D deficiency includes symptoms with muscle and bone pain/aches. Not sure if it has to do with the spasms and numbness youíre describing though. Just a thought that you may want to have that checked too.

Sorry to hear about your muscle numbness and spasms. I know it can be super scary. My ferritin had gotten up to 14 but I had another blood draw 2 days ago. I called yesterday to get my results over the phone, like I have a number of times, and this time she wouldnít release my ferritin level over the phone. I had went in because I started having symptoms again, headaches, fatigue, heart palpitations, and major body aches. The worst aching is in my legs but I am having them throughout my whole body now; arms, neck, shoulders. Anyhow, she said the rest of my labs wonít be back for 2 weeks and wanted me to schedule back in to go over everything in exactly 2 weeks. Iím guessing the ferritin has gone back down. To top it off, I started my period yesterday and itís pretty heavy. I know your ferritin can plummet when you have your period. So Iím left here thinking how low am I and how much lower is it going to go over the next week? Just super frustrating and at this point I would seriously consider doing infusions.

Payton





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