updated iron results - best next steps?

[BOWENATOR]

Hey everyone, I had some great advice on here a couple of weeks ago.

I just had a full blood test completed (given the RLS had gotten significantly worse recently) and my iron results came back low:

Iron 14.3 umol/L (Range: 10 - 30)

TIBC 54.2 umol/L (Range: 45 - 81)

UIBC 39.9 umol/L (Range: 12 - 43)

Transferrin Saturation 26.4 % (Range: 25 - 45)

Ferritin X 29.90 ug/L (Range: 30 - 442)

I assume the best next step is to speak to my GP about an iron infusion? Or something else? I have an appointment booked for Friday and was thinking about asking for an iron infusion and pregabalin but not sure if I should take meds if the iron infusion will fix the RLS

I know someone on my original thread recommended the Iron Clinic but I can’t really shell out the £800 for a private infusion - unless it definitely will work & quicker than taking oral supplements.

[SueJohnson]

Yep you need an iron infusion.

Nope - can't guarantee it will work as that helps only 60% of people with RLS.

Can guarantee it will raise your ferritin and faster than iron supplements.

You can go ahead and ask for the prescription for pregabalin and just hold on to it to see if the iron infusion will work, but it can take awhile - up to 8 weeks which is when you would ask for a new test after you get the infusion.

[ChrisColumbus]

An iron infusion is the quickest way to raise serum ferritin, but in most parts of the UK it is difficult to get an NHS iron infusion for RLS. You can of course ask, but a doctor may refer to current NICE guidance which says under management of RLS:

"Iron deficiency anaemia, or serum ferritin less than 50 to 75 micrograms/L — investigate to identify a cause of iron deficiency and prescribe iron supplements (if appropriate)."

I.e. no mention of infusions. And as you've heard, a private infusion is expensive - and unfortunately while there's a likelihood that it will help there's no guarantee.

SueJohnson gave you advice on oral iron supplementation in one of her replies to your first post.

As to medication: "everyone" warned you last time not to allow the doctor to put you on a dopamine agonist - pramipexole, ropinirole or rotigotine - but on to an alpha-2-delta-ligand - gabapentin or pregabalin.

This is where current NICE guidance still lags behind expert advice. It says:

"First-line recommended drug options for people with frequent or daily symptoms are either:

A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or

An alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications).

Before commencing drug treatment, ensure the person is aware:

Of possible treatment complications relating to dopamine agonists. In particular, augmentation, loss of efficacy, and the risk of impulse control disorders (ICDs).

That if a dopamine agonist is taken, the person (and, ideally a carer or close family member) should be warned about the possibility of an ICD developing. Symptoms of an ICD should be sought on each review consultation.

That treatment for idiopathic RLS aims to control symptoms, and is likely to be lifelong. However, it is reasonable to have short drug holidays every year to see if a remission or easing of symptoms has occurred.

Drug dosages should be kept to the minimumrequired to ease symptoms as the higher the dose, the greater the risk of augmentation.

Factors that may influence the preferred choice of drug include:

A dopamine-receptor agonist is generally preferred for people with severe symptoms, who are obese, have comorbid depression, are at increased risk of falls, or have cognitive impairment.

An alpha-2-delta ligand is generally preferred for people with severe sleep disturbance (disproportionate to other RLS symptoms), comorbid insomnia or anxiety, RLS-related or comorbid pain, or a history of an ICD.

As alpha-2-delta ligands pose little or no risk of augmentation, if clinically appropriate, they may be preferred first-line where the physician is inexperienced in long-term management of RLS."

Hopefully your doctor will agree to go the alpha-2-delta ligands route. However, they may be unaware of the correct dosage and timing of taking for RLS: Sue gave you guidance on this in her first reply to your previous post.

Good luck!

[Joolsg]

There's no guarantee iron infusions will work sadly.If you're near St George's, the Royal Cornwall or Salford hospital, you are more likely to get an NHS infusion.

[DicCarlson]

I assume you began a course of oral iron supplements. Ferrous Bisglycinate Chelate is the best choice (non constipating). I had severe RLS - completely controlled w/iron supplements. That said, why was I iron deficient in the first place? Perhaps the connection with gut health limiting absorption of minerals including iron was a consideration. That severe RLS episode was preceded and accompanied with horrible leg cramps. Light bulb moment! The leg cramps were a signal of mineral imbalance and the RLS, while not related to leg cramps, was directed by a deficiency in iron absorption.

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