TSAT low but Ferritin fine/maybe high

[b1interest]

Hi everyone,

I do appreciate reading all of your posts and am sorry for how much suffering is connected to RLS. It's very encouraging to read about a number of people finding solutions to their RLS.

I am seeing improvement but have some questions that I hope you can help me with:

RLS has been a part of my life for many years, though there have been periods of time when it was less of a problem. I had a problem about 20 years ago with anemia and have not had it again, as far as I know. But in the fall a year and a half ago, the restless legs were back in a big way, and I was only sleeping a few hours a night. I also had been developing calf pain that has stayed with me.

I found out that gastric parietal cell antibodies were keeping me from absorbing B12, and have been giving myself shots since last summer. They have helped with some of the other leg symptoms but have not touched the calf issues, and I know those can be related to anemia. Then I read about b12 deficiency often also resulting in Iron and B1 deficiencies, and have been experimenting with B1 and also found this group.

I had my iron levels tested, and Ferritin was fine, and TSAT was supposed to be normal, but it has dropped in the year of testing. Thanks to you all, I started making some changes. I took 50 mg of iron bisglycinate every other night with vitamin C. For a few months I didn't notice a difference, until I read here that it might be necessary to take something closer to 65 or even 75. So 2 months ago, I started the 75 mg of bisglycinate every other night. In the last month, my RLS has gotten much better and is barely noticeable or is more like a bit of foot flapping, instead of whole leg thrashing, which is amazing and great! Thank you all for your suggestions!

My doctor just ran some new iron testing, and my Ferritin has increased, but the TSAT is still dropping, though not by much recently. Could anyone tell me whether you think it's a problem for me to continue with the iron bisglycinate? My plan is to hope to get testing in another 3 months.

Also, I don't understand why the TSAT level has not increased. Any thoughts? My doctor just repeats the line that my iron is fine and was fine, and there was and is no need to supplement.

So Ferritin a year ago was 112 and in the fall went to 131, and now is 135 ng/ul.

TSAT started at 29% and dropped to 22% in the fall, and now is at 21%.

Thank you very much for any insights. I wish you all the best.

[Joolsg]

medicalnewstoday.com/articl...

I really think you would benefit from seeing a haematologist. Low TSAT could be caused by many issues, including gastric bleeding.

[b1interest in reply to Joolsg]

Thank you, Joolsg. I'll check with my GP, though I'm not sure how knowledgeable the hematologist is that she might refer me to; despite the presence of parietal cell antibodies that mean an inability to absorb B12 except by injection, he thought I should only be taking b12 shots for a short time. But the medical journals state that the shots are lifelong with the presence of pca. I had to fight to get them monthly, but that's now the case.

You make a good point about doing more investigation. If I don't get any real response, I'll see if I can get a referral outside of my plan.

Thanks again!