Maintaining iron levels after infusion

[howbeit-abroad]

Hi folks,

I had an iron IV infusion six months ago in the hopes that it would help my RLS. It didn't seem to (or at least, seemed to only briefly).

My current iron status is:

Iron - 31.7umol/L (5.8 - 34.5 R)

TIBC - 48.8umol/L (45 - 81 R)

UIBC - 17.1umol/L (22.3 - 61.7 R)

Transferrin saturation - 65% (20 - 50 R)

Ferritin - 202ug/L (30 - 400 R)

I'm not supplementing with any iron at the moment and am strictly vegetarian (which may have caused the low iron in the first place).

Should I restart supplementation? I know folks write about increasing ferritin levels to 200 or 300 and beyond tends to help, but my Tsat % is very high so it might be unwise.

(Am presently on duloxetine 60mg for depression - switched from venlafaxine which gave me bad side effects - and gabapentin 400mg tid for RLS.

Some days I have no symptoms and some days it's a real blight. Not really sure what to do next.)

[SueJohnson]

NO - your transferrin saturation is 65% which is very high as you mentioned. Also your UIBC is very low. In fact I strongly suggest you see a hematologist about it.

Duloxetine is an SNRI antidepressant and is know to make RLS worse. There are only 2 antidepressants which are safe for RLS, Wellbutrin (zyban, bupropion).

Why are you taking gabapentin 3 times a day? Unless you have symptoms during the day it is taken at night. If you don't need it during the day, take 600 mg 1 to 2 hours before bedtime. Since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you find you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of the gabapentin. And if you take calcium don't take it within 2 hours for the same reason. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin" so if it is still not controlling you RLS, increase by 100 mg every 2 days until you find the dose that works.

If you aren't familiar with it check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment.

[howbeit-abroad in reply to SueJohnson]

Thanks Sue. I don't get RLS symptoms at night, only during the day - so I definitely need gabapentin during the day, surely?

[howbeit-abroad in reply to howbeit-abroad]

I take Wellbutrin alongside the duloxetine - once I get my mood stable I'll try getting off the SNRI but for now I think I need it to survive.

Honestly the whole thing is so mystifying to me as the presentation seems so different to that of others. Some days I have no symptoms, other days it's a real drag 😞 and always during the day. Antihistamines don't make it worse, and tramadol (I have some from a previous prescription from ages ago) doesn't make it better.

[SueJohnson in reply to howbeit-abroad]

Yes you do. That is strange that you don't have it at night. Do you otherwise meet the criteria for RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can’t be explained by another medical or behavioral condition.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[TeddiJ]

I am a vegetarian, too, and seem to have similar issues-I just wrote a post about my low UIBC. I'm in the states so I don't understand your values, but my saturation is 58% and my UIBC was marked as low at 129 (not sure how that compares to yours). We probably both struggle to get enough protein each day. I, too, had an infusion, but it was in 2021.

[howbeit-abroad in reply to TeddiJ]

The doctor who provided my test results said the following:

> Despite the high transferrin saturation, your ferritin level is normal indicating healthy iron stores. However, if you are on iron supplements you may wish to reduce this to prevent iron overload from developing.

> Your CRP level is normal, suggesting no significant inflammation within the body.