ET and low ferritin with fatigue

[DH65]

Hi, My ferritin is always very low, right now at 10 yet all of my other iron studies are normal. Could this be the cause of extreme fatigue?

Is there a connection between platelet number and ferritin?

Has anyone tried herbal remedies for energy?

Thanks

[Mrs_Average]

Hiya I have not tried herbal remedies. I have spent a lot of time looking at nutrition. Books by Patrick Holford are good. Hope that helps .

[DH65 in reply to Mrs_Average]

Thank you, I'll check him out.

[EileenMcL]

I have ET with low ferritin but do not have fatigue. Hemoglobin production is the prmary use of the iron carried by ferritin unless there is some internal bleeding. My RBCs and hemoglobin are at the top of the high range so I am not anemic. Plus a colonoscopy and a gastric endoscopy were done to rule out bleeding, which they did. Because I have high levels of RBCs, which my doctor thinks are the source of the low ferritin, I am told to not take any supplemental iron (it might cause higher levels of RBCs). I don't know if this information is helpful to you. You don't mention your RBC and hemoglobin levels. Anemia from any source can cause fatigue.

[DH65 in reply to EileenMcL]

My Hemoglobin is 13.1 normal is between 12 and 15

RBC 4.69 normal 3.50-5.50

They both fell this month so perhaps it has something to do with it.

I'm pretty sensitive and feel everything.

So I guess I could use some iron if I'm understanding it all, right?

[socrates_8]

That is really interesting Eileen...

Makes me wonder if I might be having some form of severe bleeding going on undetected, perhaps into the spleen, for instance?

I do have minor bleeding in my gums and less frequently slow nose bleeds in my sleep, that usually wakes me at some point.

However, almost always I am extremely fatigued, and feel like I am living in a fog. I will ask my Haematologist for her opinion tomorrow when I see her next.

Thanks guys...

Steve (Sydney)

ET/MF?

[DH65 in reply to socrates_8]

I can relate to living in a fog, there are days I probably shouldn't even be driving!

[socrates_8 in reply to DH65]

Ditto ...

I drove through a red light pedestrain crossing two weeks ago... Just plain luck no-one was there when I went through...

I now have 3 days off HU while I wait to start Interferon on Monday. Not looking forward to it either...

I do not have an Iron issue at all. My levels are increased actually to Grade 4 (Whatever that means in Iron?). I am also a Pescetarian/vegan in my diet. Loads of seafood must help me a td... Love it!

Steve (Sydney)

ET/MF?

[DH65 in reply to socrates_8]

Good Luck why are you switching? I've only been on HU since Jan started with 1 pill now up to 3/ week. I know I'll need to increase but I resist due to side effects.

[socrates_8 in reply to DH65]

Hey DH65...

I have had a bad experince with symptoms increasingly becoming worse. I was diagnosed 'high risk' ET in May (57yo). Due to having had a minor stroke (TIA) event in August 2015, I commenced on 500mg per day and my first FBC showed me as 1,700, prior to being medicated. FBC at medication was 1,384. After one month (1,218), and as of today (981). Still far too high.

The extreme fatigue, enlarged spleen, nausea that wakes me 2-3 times per night, and finally an increasing awareness of 'Short term memory lapses'. However, how much of this is the ET and how much the HU will only be known by taking a break from the HU.

I am also experiencing depression and I am hoping that a change of med's might remedy this situation. It might sound trite to others here but I do not want to live this way if how I am feeling now is my new normal.

I will also start psychologist therapy as of next week. However, I am really having 2nd thoughts about using Interferon and having to inject myself three (3) times per week...

... then there is getting used to the next set of symptoms.

I was hoping to be able to have 'Ruxolitinib' but unfortunately I am not sick enough to qualify. Apparently, I must wait until my (Myelofribrotic) condition worsens before I can elect to try one solution that has proved to provide positive results where overcoming fatigue and depression is concerned, according to a personal source here in Sydney (someone else who uses it to control their condition).

I guess I will see what happens...

Steve (Sydney)

ET/MF?

[socrates_8 in reply to socrates_8]

Just for a quick update...

I was on 1000mg HU and my platelet levels have come down to 981 on this month's reading (down from 1218). However, my spleen and general discomfort have necessitated a change of med's...

I am severely depressed with all of this and generally not coping too well at all...

My Haematologist has recommended that I do not reconsider being posted abroad for aid work based on my condition, while we try to reduce my spleen's size etc...and while that might make for essentially sound logic, it only serves to make me even more depressed with my circumstance.

How do others feel about having to inject themselves with Interferon x3 per week? How does anyone work while they are feeling this way?

[DH65 in reply to socrates_8]

I'm sorry it's hard for you right now but let's hope you do well on interferon. I get depressed also but I try to find the good things that happen each day however small they are. It is hard to work and I'm grateful to work at home where I can rest and pace myself. Try to hang in there. We're here to listen.

[socrates_8 in reply to DH65]

Appreciate your sentiments and the words of your reply.

Well... I am seriously not looking forward to Interferon and wish we at least had the Pegylated version available in Oz... Hopefully in the not too distant future...?

Thanks

[Mazcd Partner MPNVoice in reply to socrates_8]

Hi Steve, sorry to hear that you are having all these problems with your ET, we can all relate to what you are experiencing, I can understand your reservations about starting Interferon and injecting yourself, we have a video on our website which might help you, it is of Alisia talking about why she was changed from HU to Interferon and then she actually demonstrates how she injects herself

mpnvoice.org.uk/about-us/vi...

Hopefully it will help, best wishes, Maz

[socrates_8 in reply to Mazcd]

Hey Maz...

My apologies for not being able to respond earlier... It appears my laptop is on its last legs too... It has served me well for many years but I am not able to replace it at the present hence I am trying to squeeze a little more life out of it ...

Thank you for your well wishes and your empathy it really is greatly appreciated by me from all the support that I receive just by simply talking with various memebers here on this site. It is simply comforting to feel the cammarderie available here...

Thus far w/ the Interferon, I am trying to make comparisons with my previous experiences visa vie with the HU.

As you may have noted, the Pegylated version is not yet available on the PBS in Oz, hence, it is every two days for injections at the moment. I have noted the onset of fatigue within the first 2 hours, and then very heavy flu-like symptoms at the circa 6 hour mark:

aching in my bones and muscles, hot'n'cold sweats and chills, severe headaches, still waking with nausea 2-3 times per night, and needing two panadeine for the headache relief...

In the literature I have thus far read concerning Interferon, these adverse affects might lessen in intensity after the first few weeks, I am hopeful of course.

While the jury is however 'Still out' the mental fog that previously was accompanying my every waking reality, seems to be alleviating, again... I hope...

I was finding that 'Mental Fogginess' possibly among the most disturbing of my side-effects, because I was beginning to think it might have been my condition and not the HU. Now...? Well as I stated above, I am more hopeful ...

By the way Maz, I have also recently determined that I am CALR positive... so no more concerns or questions of RT vs. ET etc... At the very least, it is somewhat more definitive...

Thanks again Maz...

Steve (Sydney)

ET/ (pre-fibrotic) MF

[molben4]

Hi,..I have always had low ferritin levels..usually a steady 6. All my blood work is okay and I do not have any bleeding from anywhere. I take a course of iron when my ferritin is low. I am aware that it is becoming low as I am particularly fatigued and my restless legs become a problem. Have you tried having a handful of almonds throughout the day on top of your iron within your diet. I suggest almonds rather than other nuts as they are supposed to help against fat deposits around waist.... Obviously watch your intake, as all nuts are fattening if you eat a lot of them.

[DH65 in reply to molben4]

I know I have gastritis probably due to the aspirin thinning the stomach lining. Maybe that's like a slow bleed. I had a colonoscopy last year that was ok. No one seems concerned about the ferritin level and fatigue but me.

Maybe I'll try some iron for awhile. I do eat a variety of nuts.

[wormwood]

Hi all, I have severe restless legs and it had got to such a point I went to my g.p who ordered a blood test to see where my iron level was,,, the results came back that my

Iron level was OK, but my folic acid was very low. So I'm on folic acid tablets and I'm on tamazapam to knock me out so I can get some sleep. Hopefully the folic acid will help!

I'm also on interferon 12 mu per week injected 3 times a week.... I was taking ropinirol for my legs but n.I.c.e. has just changed the guidelines for it being prescribed, so I'm having to get in touch with my French neurologist to try get my original letter from him, so I can have it again!

Keep your fingers crossed lol

Keep well everyone xx