Serum Ferritin Levels

[BishyBee]

Hi Everyone,

Thank you all so much for your messages of support and advice. I am due to go to the Doctors on Wednesday to get the results of my blood test. I have just checked online and can see the results all are coming in as satisfactory.

My Ferritin Serum test is showing as 23ng/ml.

Could anyone please advise me if this is normal level as it is saying no further action required.

Thank you in advance for your help.

Kind Regards x

[ChrisColumbus]

23 ng/ml (= 23 μg/L) is at the bottom end of the 'normal' range, and doctors are generally unaware that RLS sufferers benefit from much higher levels - certainly over 100, preferably over 200.

Can you also see your transferrin saturation (TSAT) percentage?

Point your doctor at the recently revised NICE Clinical Knowledge Summary on RLS which states:

"serum ferritin less than 50–75 micrograms/L — investigate to identify a cause of iron deficiency and prescribe iron supplements (with vitamin C to aid absorption)."

cks.nice.org.uk/topics/rest...

An iron infusion would be quicker, but your doctor may not be prepared to refer you for this - you can but ask!

Are you now taking gabapentin as Joolsg advised in response to your last post?

[BishyBee in reply to ChrisColumbus]

Hi, Thank you for your message. I have just checked and can’t see the percentage. I spoke to another Doctor after my initial appointment and have been told not to take Gabapentin. It’s so frustrating as I am being told different things from different doctors.

[ChrisColumbus in reply to BishyBee]

TSAT should be over 20% but below 45%: if it's at the bottom end, as the ferritin number is, it's even more important that you start iron treatment.

Joolsg has referred you to the RLS-UK iron therapy page:

rls-uk.org/_files/ugd/b0a19...

[ChrisColumbus in reply to BishyBee]

I think from comments in your last post that you're aware that the NICE CKS says:

"First-line recommended drug options for people with frequent or daily symptoms is an alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications)...

...An opioid (such as codeine or tramadol), taken intermittently or regularly (depending on symptoms), is an alternative, particularly for people with painful symptoms of RLS. However, take into account the risk of opioid dependence...

...Dopamine agonists were previously used as first-line treatment for RLS, but the high incidence of augmentation (suggested by a worsening of RLS accompanied by the need to increase the dose of dopamine agonist) and risk of developing impulse control disorder has led to the gabapentinoids now being first-line drug treatment."

On what basis is your doctor telling you not to take gabapentin? If you haven't already done so, show them this:

cks.nice.org.uk/topics/rest...

And then take as outlined by Joolsg in reply to your previous post, not as NICE suggests (because in this instance NICE fails to differentiate between RLS and neuropathic pain)

[Joolsg in reply to BishyBee]

It really isn't good enough. You have received such appalling, negligent advice.Definitely send that complaint letter to the Surgery & copy the RCGPs and your MP.

You need an iron infusion.

You need meds to get you off Ropinirole as you are suffering augmentation and ICD.

And really think about legal action.

[e-mail]

You have a very good case for breach of duty/negligence.

And if you can afford it, pay to see Dr Fackrell at Bath. He will arrange an iron infusion and prescribe opioids to get you off Ropinirole.

[Joolsg]

That's NOT normal for RLS. ChrisColumbus has set out the UK position. Your GP clearly isn't up to date.

Show him the NICE cks guidance.

The majority of RLS cases can be resolved by raising serum ferritin. Experts recommend levels above 200ųg.

See RLS-UK website and print off the iron therapy page under 'useful resources'. Show your GP and ask for an iron infusion.

In the meantime- take iron pills in accordance with Iron therapy page.

[SueJohnson]

Absolutely not. What's normal for other people is not normal for those of us with RLS. As Chris and Joolsg said that is very low. Ask for an iron infusion to bring it up. If your doctor won't prescribe one you can get a private one. Let us know what city you live in and I may be able to tell you where you can get one.

Meanwhile take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion.

If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.