latest bloods ahead of neurology appt tomoz advice needed

[Zenawarrior73]

hi all

Just got my latest bloods is ahead of my neurology appt tomoz and am looking for advice

Serum ferritin - 37 down from 54

Serum folate >20

Serum magnesium 0.91

Platelets 120 mine are usually low

Serum iron level 16

Transferrin 2.3

I’ve also got low calcium at 2.09

And

High anticardiolipin at 41 indicating I have severe antiphospholipid syndrome

And

High igm immunoglobulins at 7.52

so given my less than ideal appt with my neurologist last time

Any advice would be great here as I’m feeling weak rubbish my heart is doing funny arrhythmias my RLS is vile and the benign fasciculation’s are equally as bad

Thank you so much

I’m literally in bits today and can’t stop crying

I went into my hip surgery back in Feb healthy and came out with a host of problems that have just got worse and am going round and round in circles trying to get someone to listen to me

Thank you 🙏

[SueJohnson]

For your antiphospholipid syndrome you need a good blood thinner. Don't take Vitamin K as a supplement as it can interfere with blood coagulation and avoid eating large amounts of vitamin K-rich foods . Also don't take Ibuprofen nor aspirin. You should not use CBD oil with blood thinners. Be careful about drinking oolong or many other types of herbal teas if you are taking a blood thinner as a lot of them have blood thinning properties and could cause a bleed when added.

You definitely need an iron infusion for your low ferritin. You may need to go private. The Iron Clinic in Harley Street in London or in Manchester. Royal Cornwall Hospital in Truro has given infusions for RLS for £800. If you can't afford that be aware that iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor.

And you need calcium supplements. Calcium carbonate is more absorbed but calcium citrate is better.

Talk to your doctor about what to do about your High igm immunoglobulins.

[Joolsg]

I'd send your blood results to Prof. Toby Richards at the Iron Clinic and ask whether he would do a private iron infusion. He has clinics in Harley Street & Manchester.Which neurologist are you seeing?

[DesertOasis]

Hi Zena, I have APS and interstitial cystitis like you. I have the ulcers, but no pain, just life altering frequency. Life altering in that I would probably be somewhere like the Amazon right now, but for the condition. My friends and family have gotten used to my frequency. And at work I had a “special accommodation.” After giving birth my sed-rate went through the roof as well as my ANA. These were the last tests they performed AFTER 20 rounds of antibiotics didn’t seem to help with what they thought was an infection. After a few months all symptoms disappeared except I was left with newly diagnosed IC.

I never drilled down on the ANA. ANA is very non-specific. Two years ago I drilled down (after ignoring for 25 years). They discovered the APS. Since I never had a miscarriage or clots, the doc shrugged and said “guess you can take an aspirin a day, please see me in three months.”

Please do NOT take the iron every OTHER night or in a multivitamin. Please take 56mg of pure ferrous bisglycinate on an empty stomach about 2 hours before bed. Your RLS should disappear in one hour for one night. This should also raise your serum ferritin. Ferritin has very little to do with RLS. It’s all about serum iron which plummets at night and we get RLS. Please don’t take the magnesium at night, just by day. I’m a fan of magnesium. I believe that by taking it day in day out it will slowly help to shore up our lousy dopamine receptors. Good luck!!!

[Zenawarrior73 in reply to DesertOasis]

Also can you can the ferrous bsglycinate on prescription or is it an over the counter one?

Thank you

[SueJohnson in reply to Zenawarrior73]

It's OTC. If your RLS doesn't disappear after taking iron as DesertOasis suggested, go back to every other day. It works for some but not all.

[Zenawarrior73 in reply to SueJohnson]

Thanks Sue appreciate the extra advice

Right now I’m taking it all in and soaking up everyone’s kindness and knowledge and going to try and see what works 😊

[Zenawarrior73]

hi desert oasis thanks so much for this

My APS was picked up in a milder form years ago after 3 miscarriages the last one being at 41 I’m now 51 but it’s shot through the roof since this hip surgery at the time I also had v low platelets of 38 so was told no aspirin no blood thinners but advice on what to look out for in terms of clots

I’m kind of wondering if the recent hip surgery has left me with tiny clots ?? As I have hot spots these his awful muscle twitches and my restless legs is off the chart.

I feel ur pain with the IC when mine flares I’m a right grump and now realising that the antihistamine I use does aggravate my RL it’s a bit of a rock and hard place situation.

I’m hoping tomoz the neurologist looks at these bloods and realises I need some support and some proper meds

I will discuss the ferrous bisglycinate with him and am taking the info on Pregabalin or Gabapentin that Sue and Jools kindly armed me with .

I felt so well before surgery and am a wreck atm it’s so unlike me I feel like a right moaning bag all the time

Thanks so much for the advice and support everyone on here is just amazing 🤩

[DesertOasis in reply to Zenawarrior73]

Yes, make the doctor do right by you!!!

[Zenawarrior73 in reply to DesertOasis]

I’m gonna try my best

My lovely fella is coming with to make sure the neurologist doesn’t fob me off!!

I will update you all on my progress.

[DesertOasis in reply to Zenawarrior73]

Don’t forget the ferrous bisglycinate at night trick. It really might be your ticket to RLS freedom.

[Zenawarrior73 in reply to DesertOasis]

Going to get some tomorrow and amend my dinner time do I can take it on an empty stomach

Thank you Desert 😊

[DesertOasis in reply to Zenawarrior73]

Remember, your RLS should essentially be gone within 1.5 hours of taking the iron - for one night. Rinse and repeat. Please don’t forget to report back to us. We have more than one trick up our sleeves if the iron doesn’t work. Though I do tend to be a one trick pony 🫤