Update from Restlessstoz! Augmentation and Iron infusion

[restlessstoz]

I just thought I'd update you on my progress.... I've just come back from an appointment with a hematologist and am exhausted! I felt as if I was in front of a jury, pleading my innocence with my life on the line! To his credit, he had done some research into RL though not a great deal, but enough to have the gist of it. I took the research paper with me about the RL and iron infusion study and he actually asked for a copy to read... which of course I gave him! After suggesting I go back to the sleep and respiratory physician for another sleep study in case that's at play in the whole scenario, and a bit more giving of information from me, and he has agreed for me to have an iron infusion this coming Thursday he even read which type of iron was best for infusion once I pointed out that some are recommended more than others; and go back in three months! Wow!!! I'm totally shocked that I got what I went in for. Also a bit scared. It's one thing to know these things but another to have a doctor treat me on the basis of what I'm telling him rather than the other way round! Especially something with potentially severe side effects like an iron infusion.

I had to have an iron study blood test so had that at the hospital. It's recommend having them after fasting which I haven't of course, however, I have to have my three monthly diabetic blood test which this week which also includes an iron study, and I will be fasting for that one. I shall be curious to see if there is a difference in the results- fasting vs non-fasting and if so, how much? I'll pass on anything of interest that I find out.

I'm not going very well on pregabalin. I'm still waking up at all hours and being up for quite a while before being able to go back to bed. I've read that it can take a few weeks for the full effect so I'm still hoping. The positive thing though is that I'm able to have a nap during the day which I've never been able to do on any other medication so maybe a positive sign.

[LotteM]

Well done for persisting! I do hope the infusion will work for you. Please realise that it works for only about 50% of the people they tested and that they couldn’t find any indicators to predict success or failure. Much more research into that is still warranted but I don’t know whether anything is going on.

Please keep us posted, about the fasting and non-fasting iron results (get a copy of the numbers!) and of the results after the infusion. I have been promised to get one too, but it takes forever to get it organised.

Meanwhile, I keep my fingers crossed for you, especially since the pregabalin doesn’t appear effective yet.

[restlessstoz in reply to LotteM]

Thanks Lotte. Yes I'll keep you posted. I even told the hematologist that I realized that it may not work but when you're running out of options, everything is worth trying.

[Hidden in reply to restlessstoz]

This is great news that you've persuaded the haemotologist to do the infusion. I do hope it works.

I also wonder about the fasting blood test. I had a Ferritin test recently, is it supposed to be fasting?

Do you do a fasting blood test for Diabetes? If so, is it a blood glucose test?

[restlessstoz in reply to Hidden]

The fasting blood test is a BGL. (level) it gives a clear baseline for the day. The other test they do is the HbA1c which gives a reading of average BGL over the previous 3 months. If you are being checked for having diabetes or not they do a fasting glucose test where they give you some awful, sweet glucose to drink, then test your bloods periodically over the next couple of hours to see how the body metabolises the glucose.

I have read or watched somewhere, possibly a UTube clip, about it being more accurate if the patient doesn't have iron for two days prior to the test and it's done fasting, then the food and pills don't give a false reading. I may have been mishearing/reading but I don't think so. Although on a quick google it says it's non-fasting blood test.??? Does anyone know any more? Anyway, we'll soon see if there is any difference. I'll have the fasting test done on Wednesday morning.

[LotteM in reply to restlessstoz]

The fasting iron and ferritin test is recommended in the paper on iron ( and infusions) and RLS from the IRLSSG. Same thing about not taking iron several days before the test. Although I am mot completely sure about the latter, it does make sense.

[restlessstoz in reply to LotteM]

Thanks Lotte. I knew I'd seen it somewhere! Off to bed now with hopes for a few hour's sleep.

[LotteM in reply to restlessstoz]

Sleep well! Midday here.

[restlessstoz in reply to LotteM]

At the moment, I don't think it would matter what time of day it was, I seem to be tired all the time. I dozed for an hour and a half today after lunch- not actual sleep but the next best thing. Work tomorrow so I need to sleep tonight.

[Hidden in reply to LotteM]

Hi Lotte did you read HOW fasting or not affects the Ferritin level result?

i.e. does it gve an artificially lower or higher result or just simply wrong?

[Hidden in reply to restlessstoz]

I was wondering because here, according to my own experience they don't tend to do the fasting BGL anymore, or the Glucose tolerance test, just the HbA1c. Which doesn't require fasting. I guess they might do the tolerance test to diagnose Diabetes if the HbAic indicates it. There's also a lot of self-monitoring now and momentary levels can be judged from Glucometer readings I guess.

I'm not sure about fasting for an iron test, is that Haemoglobin or Ferritin? I very much doubt that fasting will affect Haemoglobin.

For Ferritin, I've just read that "You may be instructed to fast for 12 hours before the test", which doesn't give a definitive answer. Also just read LotteM's post so will check with my GP.

[Madlegs1 in reply to Hidden]

I get ferritin tests all the time. The prescription says non fasting.

As far as I know it is more important to have ferritin tests at the same time, each time. ie -- in the morning or in the afternoon.

Ferritin levels are affected by inflammation, so can be skewed upwards by flu or major trauma events.

The Iron Disorders Institute is an excellent site for all matters iron.

[Hidden in reply to Madlegs1]

Thanks, I have read that fasting lowers ferritin levels, but that was a study looking at "fasting" for 2 or more days and was in relation to women suffering anorexia so I think that can be discounted.

Another site (WebMD I recall) , says unequivocally fasting not required.

I think the medical profession sometimes prefers to err on the safe side, although it's not always clear what the safe side is.

I recall about 20 years ago I had a bit of a crusade against excessive fasting of patients prior to surgery. Patients were instructed to fast at least 12 hours, both food and fluids, but in effect, because of hospital routines this could amount anything up to 18 hours, in some extreme cases.

The rationale behind this was that stomach content volume need to be reduced to under 25mL and pH at least 7 (neutral). This to avoid regurgitation of stomach contents during anaesthesia.

This was maintained despite the evidence that

a) fasting for longer than 6 hours showed no further significant changes in stomach volume or pH

b) 200mL clear fluid ingested within 2 hours of anaesthesia actually reduced stomach volume and raised pH

c) Even relatively short periods of fasting prior to surgery can affect protein metabolism and can contribute to delayed would healing, reduced immunity and breathing problems post-operatively.

It appeared that excessive fasting may have been causing greater problems than it was intended to prevent.

I believe the practice has now changed.

That's why I have a "thing" about fasting for anything unless it's really necessary.

[Madlegs1 in reply to Hidden]

I know I have a high metabolism, which means my body cycles food and medicines quicker than normal.

This has serious consequences for anaesthetics, and also for 'longlasting' meds such as Oxycontin.

I also get the 'munchies' after about 2 hrs fasting- so often have to lie about pre op fasting times. Luckily , water is allowed.

Hope that clears everything up now!!!

As mud, sez you!🤣

[Hidden in reply to Madlegs1]

There's different kinds of mud!

Luckily, I haven't had much surgery myself' My last experience was 7 years ago and I think I fasted over 12 hours, including fluids.

I did receive a small amount of fluid at 6am of the morning of the op, but it went in the wrong end and VERY quickly came out again with interest!

I have concluded that it isn't necessary to fast fior a ferritin test and having visited the site you kindly referred me to I am exploring heme supplements.

[restlessstoz in reply to Hidden]

The UTube clip I watched was: Dr Christopher Earley talking about iron treatment. youtube.com/watch?v=2stIoo8...(Not working as expected?)

[Hidden in reply to restlessstoz]

Thanks

That makes thinbgs very clear

[restlessstoz]

Well, I had the infusion yesterday afternoon and have to wait now. However, what did absolutely shock me was that the non-fasting iron study prior to the infusion showed my ferritin level was 97!!! That means that in the time since my last test on 12th March this year its gone up considerably. It was 25 in January and only 78 in March!

Now, interestingly the fasting iron study showed that my ferritin level was 110 only two days after the non fasting one showed 97, and a day prior to the infusion. so quite a difference in the numbers. The saturation was 17 non fasting and 37 fasting. According to Dr B. the saturation should be well above 20% so at least the fasting one is showing that.

Now I don't know what that means in medical terms or which shows the accurate levels. Any thoughts???

I am surprised by the surprising ferritin levels and do wonder if the increase in iron uptake has any bearing on my FODMAP diet and maybe an intestine that's better able to absorb the iron. Again, any thoughts?

I'll now wait and see if the iron infusion has any influence on my RL.

I also am increasing the pregabalin to 225 mg to see if it reduced my RL any further. I still am waking three times or so at night for an hour at least, but I have to say that the symptoms aren't as severe as they were two or three weeks ago and I can and have had a snooze in the afternoon which was unheard of in the previous 5+ months. Hopeful perhaps.

[LotteM in reply to restlessstoz]

Thanks for the update! Iron fasting and non-fasting results are indeed puzzling. I do suspect that levels are far more variable than people assume. Either over the day and/or between days. Many substances in our body are.

I’ll keep my fingers crossed it will work out well for you. Although you may not know whether improved symptoms will be owing to increased pregabalin doses or iron levels. First see what happens. Good luck!

[restlessstoz in reply to LotteM]

Thank you Lotte dear. It's great to know there are people out there who are supporting me.,