high iron

[ChicagoBears2024]

asked my doctor last week to order a full panel iron test. Lab order was written as IRON(F). 3 hours later get a message that preliminary result is iron high 172 gu/dl. Doctor will discuss results later. Nothing on Ferritin. Have an appointment with Neurologist next month. First time seeing a specialist since my doctor told me I had RLS about 10 years ago. Trying to get off Ropinirole. Any comments or info on this Iron test results? I’m near Austin TX in USA

Thanks

[SueJohnson]

Call the office and ask what your ferritin and TSAT (transferrin saturation) was.

[ChicagoBears2024 in reply to SueJohnson]

Thank you

[ChrisColumbus]

Normal serum iron for adult men is generally said to be in the range 70-175 micrograms (μg) per decilitre (dL).

Your figure is towards the top of the normal range: was the test taken in the morning, after at least 8 hours fasting, no iron pills (if taken) for 24 hours before testing time?

Serum iron level has diurnal variation, with morning levels being c. 30% higher than the whole day iron levels, so if your test wasn't taken in the morning or wasn't taken after fasting and refraining from iron supplementation the results may not be a reliable indicator.

A full panel iron test should include results for serum iron, total iron-binding capacity (TIBC), ferritin, transferrin, and transferrin saturation (TSAT). Hopefully when you see your doctor they will discuss all these levels with you: ferritin and TSAT are the most relevant results appertaining to RLS. Your doctor may (or quite likely may not) know that RLS sufferers benefit from a serum ferritin level of at least 100, preferably over 200.

So come back here with your full results when you get them for further advice.

[ChicagoBears2024 in reply to ChrisColumbus]

Thank you so much. Very valuable info

Will keep updating of progress. Appnmnt on Wed with sleep specialist. Not diagnosed, but I’m like 99% sure I also have sleep apnea. I read somewhere people with Sleep Apnea shouldn’t be on Ropinirole. Anyone know anything about this specifically

Thank you

[ChicagoBears2024 in reply to ChrisColumbus]

They must have done a generic iron test. I told the doctor full panel iron test. I called the lab today and they told me no ferritin and no TSAT were done. Unbelievable. Now they are trying to make a new order for another blood test. See what happens

[ChrisColumbus]

Well, putting possible sleep apnoea issues to one side, ropinirole (Requip) is like pramipexole (Mirapex) and rotigotine (Neupro) a dopamine agonist (DA). These are no longer prescribed for RLS by experts, because of problems with augmentation (making RLS worse over time) and impulse control disorders (gambling, spending etc). Unfortunately many doctors continue to prescribe them.

I note that SueJohnson previously gave you advice on how to come off ropinirole and move to current medications gabapentin, pregabalin or a low dose opioid such as buprenorphine, so you may already be acting on this...

healthunlocked.com/rlsuk/po...

Also read this Pinned Post for further information on the issues with DAs:

healthunlocked.com/rlsuk/po...

[ChicagoBears2024 in reply to ChrisColumbus]

Yes. Hope neurologist agrees I get off of it. Appt my next month. Following Sue counsel

Thanks

[ChrisColumbus]

I note that the Cleveland Clinic does caution about ropinirole and sleep apnoea, as well as various other conditions:

What should I tell my care team before I take this medication? They need to know if you have any of these conditions:

heart disease

high blood pressure

kidney disease

liver disease

low blood pressure

narcolepsy

*sleep apnea*

smoke tobacco cigarettes

an unusual or allergic reaction to ropinirole, other medicines, foods, dyes, or preservatives

pregnant or trying to get pregnant

breast-feeding

Good luck with the neurologist: they may or may not be up-to-date with RLS treatment. The Winkelman piece linked from the Pinned post I shared is worth having in your armoury: he's an eminent medic, direct link here -

sleepreviewmag.com/sleep-tr...

[ChicagoBears2024 in reply to ChrisColumbus]

Thanks for the great info

[MaxxRLS]

Sorry I can’t help with a reply to your question but just saying Hi as a fellow Bears fan (from the UK)

[ChicagoBears2024 in reply to MaxxRLS]

Hi

🐻⬇️

Can’t wait for new season to begin !!

[WideBody in reply to ChicagoBears2024]

Da Bears!

[Cure4RLS]

Iron changes quickly based on what you eat. It will go up or down depending if you fasted or even ate meat the night before the test.Ferritin is long term iron storage and the one you want to look at for RLS. Ferritin will raise temporarily if you have had a cold, flu, or other illness within 6 weeks of the test. So wait at least 6 weeks after these things to test Ferritin.

[ChicagoBears2024]

just did another iron test today

Iron 114.

Ferritin 45.0 mcg/dL

TIBC 309.0 (TOTAL IRON BONDING CAPACITY)

Calculated % Iron Sat 37

Everything supposed to be in the normal range.

Will have these forwarded to my Neurologist appointment next month