Feeling cold all the time as a sign I need more iron?

[SleepyBhamster]

Hello everyone,

Background: had Injectafer infusions in late Sept/early October and had hoped they would last a year--but then I've seen posts on FB where some just get infusions every 6 months.

Wondering if it is common or not to have a constant feeling of coldness as a sign that it's time for more infusions. It is ridiculous how cold I am all the time. Sleep is not good because I am always either too hot or too cold.(Too hot from hot flashes or when I try to cover up more, i.e., adding socks or another blanket.) During the day, my energy and concentration are low as well.

I have only just started to feel the slightest tingle of RLS starting up again in my feet and legs--but my real question is if this coldness (that I never connected to it until now) could actually have been my first sign.

I am going to be asking my rheumatologist if I can get blood drawn tomorrow to check my ferritin. Would you ask for anything else?

Thanks,

Sleepy B

[stjohnh]

Hello everyone,

Background: had Injectafer infusions in late Sept/early October and had hoped they would last a year--but then I've seen posts on FB where some just get infusions every 6 months.

Wondering if it is common or not to have a constant feeling of coldness as a sign that it's time for more infusions. ...

...
I am going to be asking my rheumatologist if I can get blood drawn tomorrow to check my ferritin. Would you ask for anything else?

Thanks,

Sleepy B

HI Sleepy,
I have received 3 sets of Injectafer infusions now, and I am at about 10 months from my last set. The most common pattern for people that respond to IV Iron is: First set of infusions lasts significantly fewer months than subsequent infusions. Most people that respond ultimately get about 1 infusion per year, but as you have noted, some get them more frequently and some less. It is looking like for me, 10months-12 months is likely my interval between infusions.

I haven't noticed feeling cold as a first indicator that my brain iron level is getting low. I just notice the start of typlical RLS urge-to-move symptoms returning. Very mild at first. I don't remembet other Injectafer users saying they felt cold when they were due for the next infusion.

The most common medical problem causing fatigue and cold feelings is hypothyroidism. The test for low thyroid is a TSH test. Ask your rheumatologist to check that.

[SleepyBhamster]

Interesting. So it could be something else, huh? I don't want anything else!

However, I did include in my email to the rheumatologist a description of my current icy-coldness and did mention TSH to him because some in my lupus support group mentioned it. It was last checked in January because I have a thyroid nodule that so far hasn't been doing anything. I get checked once a year with a blood test and ultrasound.

While I've got you: my doc didn't think it necessary to test my blood after my infusions to see where the ferritin level went. Think I should ask for that or it doesn't really matter?

Thanks!

[stjohnh]

...

While I've got you: my doc didn't think it necessary to test my blood after my infusions to see where the ferritin level went. Think I should ask for that or it doesn't really matter?

Thanks!

The guidelines suggest a test before each infusion and a test at 8 and 16 weeks post infusion. However, the reason for the test is to avoid excessive total iron in your body. Because so many conditions can increase the ferritin and are not related to iron excess, there will be some RLS patients who don't get needed IV Iron because of this. It also requires A LOT of IV iron to cause problems for someone like us, who have normal blood iron (blood ferritin test is normal) but low brain iron, to get their iron level too high. Because of this, I do not recommend getting iron tests (especially the ferritin test) before subequent Injectafer infusions. Note this is my personal opinion and NOT the official recommendation of the Guidelines study group. My personal hematologist feels the same way, and while he checked my iron status prior to my 2nd Injectafer infusion, he did not require checking iron status before my 3rd. I did get a post infusion test about 8 weeks after my first set of infusions, but have not had any post infusion iron tests since then.

[SleepyBhamster]

So are you saying that we should just go by symptoms and not by ferritin level? Since it's my rheumatologist who is ordering them--after reading the literature I handed him--I'm not sure he would feel comfortable doing that. But he might if he understood the reasons you outlined above. You're saying that there are so many factors that affect the ferritin level that it could be some completely other reason the level is high? So we could still need more ferritin even if the levels look high and it's best not to pay attention to them?

I imagine he would at least want to check the ferritin now but perhaps not if I cut and paste what you wrote above. But without an appointment to discuss it, it would probably be easier for him to order the blood test.

[stjohnh]

So are you saying that we should just go by symptoms and not by ferritin level? Since it's my rheumatologist who is ordering them-,,,

If you have a doctor that will order IV Injectafer for you, I would do whatever the doctor feels comfortable with. I certainly would not criticize any doctor that follows the guidelines. It is difficult to find a doctor that will order IV Iron for RLS patients, so I would do whatever is needed to keep that doctor comfortable with continuing to order the IV Iron.

And yes, there are many medical conditions that will cause the ferritin to be abnormally high that are NOT related to excessive iron. Ferritin is a protein that stores iron in the blood and some other organs. Ferritin is not iron itself. Many of the not-iron causes of high ferritins are rheumatologic problems (rheumatoid arthritis, Lupus, etc.). Anything that causes inflammation anywhere in the body can cause the ferritin to be abnormally high without having anything to do with the body's iron stores. Many, perhaps all, of the RLS patients who have been refused IV Iron on the basis of a high ferritin probably do not have too much total body iron. We just don't have a test that can show that.

There is a genetic disease that causes iron to accumulate in the body (hemochromatosis). Those people mostly have a ferritin of over 1000. Yet there are people with hemochromatosis that have RLS and low brain iron, even though they have too much iron in the rest of their body. This is partly why it is generally thought that the cause of low brain iron in RLS patients is due to a problem with the blood-brain barrier.

[SleepyBhamster]

I understand. Thanks so much.

I do hope that I can get infusions soon to see if they possible lessen some of this coldness I'm feeling. Fingers crossed!