Copper deficiency induced bone marrow failure

[Lbrown]

Apparently people with sarcoidosis have to stay out of the sun.

Well, you still need to take care of yourself despite the counts. Have a good lunch with your mum!

Deb

[riccd2001]

just wondering... what units are you using for Hgb? AFAIK for the SI system of measurement, the normal range units for Hgb are grams per litre(M 81 to 112; F 74 to 99). Your CBC result of 132 seems to be really high; did doc say anything about that?

[Chirley]

Hi, my results say g/l with a normal range of 115 to 165. It doesn't give male and female normal values probably because I was already known to be female.

It's definitely in the middle range of normal but this has happened once before and three weeks later my Hb was 70. I just have to wait and see and hope that my counts stay good. I just wish I felt as good as my tests look.

Maybe the discrepancy in normal values explains why when people say they aren't transfused until they are 70 or 75 I always think that it can't be very good for them long term to let themselves become that anaemic on a regular basis.

Regards

[riccd2001]

I was looking at the the wrong "cut/paste reference..."

For sure, normal hemoglobin levels are different in women and in men. In women, normal hemoglobin ranges from 120 g/L to 160 g/L (12.0 g/dL to 16.0 g/dL). In men, normal hemoglobin levels range from 140 g/L to 180 g/L (14.0 g/dL to 18.0 g/dL). Usually the mark for transfusion in Ontario is 90 g/L for all

[Chirley]

G'morning.

I just received a phone call from the hematologists secretary with last Thursdays copper level. It was 3.8 which when I work it out using the US reference numbers, equates to 21ish. The ceruloplasmin was 0.09 (ouch) and Fe has come down to 1186. Originally the secretary said the Fe was 86 and I just about fainted with happiness but she rechecked and found she'd made a mistake. Oh well, 1186 beats >5000 any day.

This isn't a BM issue but oh dear, my neighborhood is going downhill and I really want to move. There has been 3 people shot in my neighborhood in the last week, one of them was less than 100meters away. Then yesterday a car lost control and smashed into a house only 3 houses away from mine. The house almost collapsed and the little girl in the bedroom had only just been taken to the lounge by her Grandmother. So lucky! The driver of the car was arrested with guns, drugs and proceeds of crime money. This used to be a family neighborhood but the Government has bought a lot of the houses and moved dysfunctional people into them. The average value of the houses the Government is supplying to these people would be $ 400,000 each. Now they look like rubbish tips with car bodies on blocks in their front yards, rubbish everywhere etc. I probably couldn't sell my house now because no one would want it.

Well, that feels better now that I've had a whinge about our ludicrous State Government and it's policies.

Regards

[cathybee1]

I love the little insight into your parents...and I hope your day with them was a fun one.

[cathybee1]

Gosh, looks like I missed all yesterday's posts when I posted last. Terrible news about your neighborhood, Chirley. My mom lived in a neighborhood that transitioned like that, into one where drugs and shootings were more common, and yes, government subsidised housing did play a part in that transition. Hers eventually transitioned back but it took a number of years.

ouch about the copper level and ceruloplasmin. But very very good news about the Ferritin.

Bruce goes back to the hematologist tomorrow. Hopefully we'll find out how his kidney and liver numbers are doing since he's been on the Exjade.

[Chirley]

Hi, nothing much to report.

I have just returned from a visit to my GP. I got the usual lecture about restarting the copper infusions. He ordered a blood test and I couldn't see the point of having it done but in the end curiosity got the better of me and I did have it.

Physically, I have become weaker. I had a fall not long ago and couldn't get up by myself....that wasn't fun. I can walk only very short distances and with a lot of effort. I have bought a mobility scooter which will be delivered tomorrow. My voice is weak and hoarse and I'm incredibly tired. I'm not sure but I think I might be having small siezures, just sometimes I realize that I haven't been aware of what's happening around me. This is almost always preceded by flashing lights and a partial loss of vision.

My old dog became ill during the week and I felt that I couldn't give her the care that she needed so I had to have her euthanized. I know I did the right thing even though it hurts emotionally and I miss her so very much.

I expected to be lectured by my family for refusing treatment and having to watch me become weaker but they have been wonderfully supportive. It must be hard for my parents and I do feel guilt for putting them through this.

I'm not sure if I have any bone marrow failure, I think the tiredness, breathlessness and pallor can probably all be attributed to the copper deficiency rather than anaemia but I suppose I'll find out when I get the blood test results.

If I get to the stage where I feel absolutely awful, I reserve the right to change my mind about having more copper infusions. My hematologist has found a treatment centre a bit closer to where I live that is willing to give me the copper if I change my mind. That would make life a lot easier. The neurologist, on the other hand, told me that while I refuse the copper he won't help me. Not much he can do anyway I suppose. No great loss.

Regards

[Birgitta-A]

Hi Chirley,
How sad that you have become weaker and that your old dog had to be euthanized. Very good with the mobility scooter!

It is always difficult to decide about treatment when treatment means lower quality of life and the results of the treatment isn't too impressive. Most of us will have to face this kind of problems sooner or later.
Kind regards
Birgitta-A

[cathybee1]

Hi Chirley. I'm very very sorry about your dog. The continued weakness and fatigue must be frightening.

You do have difficult choices to face, and I'm glad your family is behind you.

It's very very good that your hematologist is trying to give you a more attractive option if you elect to go back to treatment.

Bruce just got back from another blood test. He did have his copper tested last week for the first time in a month but no results back. He thought last week it was transfusion time, but his numbers were still a little higher than expected. He upped his dose of Exjade a little bit, and is still tolerating it well.

I'm sending big hugs your way. Losing a dog is very very hard.

[mausmish]

Chirley, very sorry about your dog. It's always so hard losing our beloved pets, all the more so when you're not feeling well yourself. Hugs and good luck to you whatever you decide about the treatments. Karen

[Chirley]

Hi,

It's been almost 12 weeks since I had a copper infusion and my Hb remains good at 128. My WCC has fallen to 2.1 and neuts are 0.8. My liver enzymes have worsened slightly (he didn't give me numbers).

I'm happy with my results but it shows that the copper deficiency is starting to impact my bone marrow. Last time my counts dropped dramatically once they started being effected. I just have to wait and see.

Copper level isn't back yet.

I'm not sure but I think I might have something wrong. I fell asleep in my lounge chair yesterday afternoon and I woke up shivering with cold. It's summer here and the temperature was around 32 degrees yesterday, so I know that shivering is distinctly abnormal.

My mobility scooter arrived yesterday but I was too tired to do much with it. My remaining little dog (Gidget) hopped on and we drove around the yard a few times. She seemed to enjoy it. Maybe today I can go for a ride to the local park.

Regards

[Birgitta-A]

Hi Chirley,
Good that your Hgb is quite high! You have managed with very low neutrophils before so 0.8 is not so low for you - the shivering hopefully didn't depend on fever.

Fine that you and Gidget liked the scooter. It must be perfect for excursions and shopping.
Kind regards
Birgitta-A

[cathybee1]

Hi Chirley,

That is a good Hgb number, as Bruce's hematologist would say, you are still "holding your own." (I never know exactly how to take that one, to be honest.)

I hope the shivering is temporary. Please keep us posted.

And I am glad your scooter arrived. Gidget will love a walk to the park.

You are baking in the heat and we got about a foot of snow today here! My dog Gus went nuts, buried his head in it, and moved forward, his head being a kind of snowplow! I guess he's missed playing in it after the dry winter.

Bruce is going for his transfusion tomorrow, he put it off for almost a week, but is now experiencing the pounding in his head that's a sure sign he needs a couple of liters.

He got his copper results yesterday. He is at 59 now (normal is at 70).

Hugs, Catherine.

[Chirley]

Hi,

After a lot of trouble, I finally got my copper level back today it's down to 0.9 (13-25) and that would have been a week ago.

I worked out that if I multiply my results by 6 it brings it into the same type of measurement that is used in the US. That means that my result would be something like 5.4 And no, I don't mean 54, it really would be 5.4.

Because my GP Is on sick leave again, I spoke to another doctor to get these results and he wanted me to go straight to hospital

I'm due to see my hematologist and have another port flush in just under 4 weeks but I can tell that my Hb has started dropping and once that happens it drops really fast. Last time it dropped over 50 in 18 days. A sudden drop like that is harder for the body to adjust to than a chronically low Hb.

Oh well, looks like I'm about to start the treatment centre round-about again. I have enjoyed the respite.

Regards

[Birgitta-A]

Hi Chirley,
Yes, as you wrote you have better start treatment with copper again - too bad but your quality of life will be very low if your HGB is falling.

Now you have tried to stop copper and unfortunately it didn't work. We can't do more than examine the options and follow the results of our own "trial".
Kind regards
Birgitta-A

[Chirley]

My oh my. Now I know what drama is.

I was on my way to have a blood test on Wednesday when I felt like I was going to faint so I sat on my walker and someone pushed me into the pathology clinic. I just got there when I collapsed. When I woke up I had vomited all over the place and been incontinent of bladder and bowels. Talk about being horrified! Well, I kept vomiting and passing in and out of consciousness and the pathology ladies called my GP and he came and took my blood pressure but he couldn't get one. So they called an ambulance and took me to hospital with lights and sirens.

At the hospital they thought I has septic shock because my blood pressure was still really low and my neuts were low(they didn't say numbers) so they had the resus team and the ICU team with me. After a lot of investigations they decided to admit me to ICU but didn't have a sterile room there so they transferred me this hospital with a medical escort. Here I was admitted to a neuro ward with 3 other people ??

After lots more tests it has been determined that they don't think I have an infection but my neurological problem has progressed and effecting the part of the brain which controls blood pressure called autonomic something or other. However after being here three days they are now thinking I need to go into an isolation room, sometimes doctors and hospitals are hard to comprehend!

Anyway I have been very well looked after and I see my hematologist every day and my neurologist twice a day. I'm on a continuous potassium infusion and have started copper infusions as well. My blood pressure is better and sits around 80/35 although sometimes it drops lower. Apparently I now have C3 myelopathy which is at a level where the diaphragm and breathing can be effected but so far, so good.

I had another MRI which incidentally mentions that I have no bone marrow. The hematologist says that he thought that should have improved with the copper that I had last year, so I think I might be having another BMB in the future. My last bone marrow said 10 to 30 percent cellularity and because my numbers came really normal we thought that must have improved.

The neurologist said that this autonomic what ever thingy might be permanent and I might be in big trouble so I'm keeping my fingers crossed that it improves.

I apologize if I'm not making a lot of sense because I have also been a little bit confused the last couple of days and forget things really fast.

Regards

[Marlene]

Wow Chirley!!!!! That's very extreme. I'm glad you were in right place when you fainted and that they could respond so quickly.

Hopefully the automonic nervous system will stabilize with the copper. Sounds like you are good hands.


Hang in there....

[Neil Cuadra]

What an ordeal, Chirley. I'm surprised you are able to recount it in such detail. You must have been very dehydrated when you first got to the hospital so I'm glad they tended to you promptly. We have our fingers crossed for you too.

[Birgitta-A]

Hi Chirley,
Too bad with the new symptoms!

I really don't think they can study the bone marrow in detail with MRI - BMB is of cause much better.

Hope your blood pressure will stay normal after treatment with potassium and copper! When potassium is low the heart can beat very slowly and this can cause fainting.
Kind regards
Birgitta-A

[cathybee1]

Oh, Chirley, what a frightening experience. I am glad they were able to treat you immediately and that you are feeling better. Everything IS connected to everything else, isn't it?

Let's hope that the neurologist is wrong and that this is a temporary situation.

Hugs!

[Chirley]

G'day, I'm feeling better already. The potassium has been ceased and I ve been transferred to the oncology ward.

My blood pressure is responding and is consistently at 100/45 ish now. My Hb has dropped to 80 so I'm about to start my first blood transfusion of 1 unit in a year.

I have quite bad bone pain but I'm looking on that as a good thing because it means the bone marrow is producing cells

I'm still getting some visual loss and still can't walk without a lot of assistance but the physio took me for a little walk around the bed and I felt very satisfied that I managed that.

I don't know what I can do to atone my GP who I managed to vomit on (amongst other things ). I think a nice bottle of wine might be the thing.

Better go, my copper is infusing with my saline IV so the blood is going to go into an IV in my arm and it will be out of action for a couple of hours.

Regards

[Birgitta-A]

Hi Chirley,
Good that you are feeling better! Not so positive that your HGB has decreased. Hope you will continue to improve!
Kind regards
Birgitta-A

[cathybee1]

Thanks for the update, Chirley. I've been thinking about you. I'm so glad your blood pressure has gone back up.

I doubt this is the first time someone has vomited on a doctor....but yes, wine is definitely a good consolation prize.

Hugs

[Chirley]

Turns out I have tested positive for MRSA. Odd, I have only had a very low grade temperature once.

I'm finally going to get my own room .

My poor room mate has only just got over being unconscious and fitting from an infection (neutropenia due to chemo for advanced non hodgkins lymphoma) and now we've shared a room for 3days. I feel very bad for her, but nothing I can do about it.

I'm waiting for my doctor to come and see me. Infection control practioner has already been and done the whole education thing.

I can only have got this on my last visit to this hospital a few weeks ago. I'm not very happy.

Regards