Hi from Ct

[liftaddict]

Hi. I am 60 years old. Ride my mountain bike 3 to 4 days per week. Here is my data. I would appreciate any inputs. Thank you in advance . Trying to determine what kind of doctor would help with the copper deficiency my hematologist said that he knows nothing about it.

Confirmed Conditions :
Astma (avoid histamines )
Glaucoma, ( prostaglandin, betablocker as required )
Parietal cell deficiency (sublingual B12 for this),
D 25 hydroxy supplements twice a week
Pregnenolone was almost 0 supplementing
Copper was low supplementing

Blood count data that is lower than standard
Ceruloplasmin :17 17
Cholesterol : 154 ( increased saturated fat consumption)
Lymphocytes ABS 1.2 .97 1.36 1.48 .9 .9 .88 1.26 .95 .91 .98 1.1
Methylmalonic Acid was almost zero B12 helping that
Neutorphil ABS 1.4 3.4 2.1 1.45 1.21 1.4
RBC 4.7 4.52 4.49 4.61 4 4.13 4.15 4.53 4.59 4.12 4.43 4.18 4.21
WBC 3.2 3 4.9 3.1 3.7 4.5 2.9 3.4 2.6 3.3 2.6 2.7 2.7 3

Blood count data that is higher than standard

MCH 32 31.9 32.3 32.8 34.1 34.2 32.8 32.7 34.4 33.9 33 34
MCV 98.1 96 101.3 96.9 97.1 100.1 101 99.7 97.8 100.5 99.7 99 97 98.9

[Marlene]

It's difficult to say what kind of doctor you should see. I'm surprised your hematologist could not speak to the copper. Reversing low copper can reverse MDS in some. You may want to spend some time on this thread. Chirley has a metabolic issue with copper.

http://forums.marrowforums.org/showthread.php?t=2576

It looks like you have/had other nutritional issues. Have you ruled out gastro-intestinal issues? You should be checked for h-pylori. Also, gluten sensitivity can and will contribute to it. May will test negative for Celiacs disease but still have problems with gluten causing absorption issues in the gut.

BTW...your B12 should be at least 500.

[Greg H]

Originally Posted by liftaddict

Copper was low supplementing

Hey liftaddict!

I have had low copper as well. The advice I got from pharmacists and a oncology nutritionist is that it's important to use chelated copper for supplementation, instead of the copper gluconate that's more commonly available.

I use Bluebonnet (it's a Texas company) Chelated Copper (copper bisglycinate chelate). Some good health food stores will have it, or you can get it online from Koshervitamins.com.

My copper was pretty stubborn coming up. At one point I was taking 9mg a day, and that seemed to do the trick. After about six months my copper level was actually above normal and I cut back to 3mg a day. I haven't had the copper tested lately.

Too much zinc can mess up your copper; there are a bunch of folks out there who suffered copper deficiency from using too much Poligrip on their dentures (Poligrip used to use zinc in their adhesive formulation).

Does your doc think you have MDS or something else?

Take care!

Greg

[Chirley]

Hi liftaddict??,

I have a metabolic deficiency (unnamed and very rare) which prevents me from absorbing, retaining and perhaps utilizing copper efficiently.

I see my haematologist and up until recently was also seeing a Metabolic Medicine specialist and a Neurologist. I have been discharged from their care and now only see the haematologist. I have been referred to an Endocrine Clinic but haven't received an appointment yet.

When the copper deficiency was first discovered my haematologist gave me heaps of journal articles to read. I noticed that in a couple of the articles it was found that people with copper deficiency and a current OR prior history of B12 deficiency tended to have a poorer neurological outcome than people who never had B 12 deficiency.

I recommend that you see a Neurologist even if you don't feel you have a problem so that you have a baseline to work from in case you develop some problems in the future. Having said that, my neurologist was pretty much a useless waste of time so I hope if you do decide to see a neurologist that you get a better one than I had.

I have a suspicion that long term copper deficiency may cause long term bone marrow problems. This is just a suspicion and is based soley on my recent blood results. I used to have pretty much completely normal blood counts when my copper was supplemented and the copper level was in the normal or even slightly below normal range. For the last few months my blood counts are often low even with a normal blood copper and my platelets are always below normal now. My bone marrow seems to be more fragile than it used to be and my counts don't bounce back the way they used to. Because of this, I highly recommend that you have the copper deficiency and B12 deficiency fixed as soon and as
aggressively as you can so that any potential long term marrow impact is minimized.

The Mayo Clinic had a copper replacement protocol of Intravenous Copper Sulfate 2.8mgs (from memory) per day for 5 days and if necessary repeat in a few weeks time if the blood copper is still below normal. I have a regime of IV copper Sulfate 4mgs a day for 5 days every third week but this is only because I can't retain the copper (I excrete it in my urine). You shouldn't have this problem.

As far as I'm aware, there is no such thing in Australia as a haematologist who specializes in Copper deficiency and I doubt if there is any such thing in the US either. Because you have an existing absorption problem from your stomach perhaps your best bet would be to see a Gastroenterologist as well as the Haematologist.

Best of luck to you.

Regards

Chirley


I forgot to mention Cathy Bees husband was receiving IV injections od copper for a while but they didn't seem to help his blood counts so he stopped having them, perhaps you can ask Cathy about them.

[cathybee1]

The Mayo Clinic in Rochester does have hematologists who are very knowledgeable about the copper/anemia connection. My husband's local hematologist was able to contact one of them by telephone for a consult. Unfortunately, Bruce's low copper levels never resolved with supplementation.

[liftaddict]

hi greg h thanks for your input. i think my blood copper is ok it is the ceruloplasmin
that is still low. this is after 2 months of 4mg supplements daily. You are the second
person to mention that i am using the wrong copper. I will be switching

[Chirley]

Hi lift addict, just be a little careful with copper supplements if your ceruloplasmin is low.

Sometimes Wilsons Disease manifests with a LOW (surprisingly) copper and a low ceruloplasmin.

If you take copper supplements with Wilsons Disease you can cause dire liver problems.

Please see a Gastroenterologist to have your low ceruloplasmin diagnosed properly.

Regards

Chirley

[liftaddict]

i will check that thread. thank you very much

i have low parietal cells so low intrinsic factor, and low B12 absorbtion

Take B12 shots or sublingual. Take Hcl before meals with acidophilus. Major digestion issues

[liftaddict]

forgot to mention gastroenterologist checked fo h-pylori about 16 months ago, healso did endoscopic exam to small intestine and a colonospy. everything looked ok

[liftaddict]

it is looking like gastroenterologist. I haven't han any sucess with hemotologists.

My gp is freaked about the copper/ceruloplasmin deficiency and isn't able to come up with anything right now

[liftaddict]

sure hope i don't have to drive to the mayo clinic. Hope my gastroenterologist can come up with something. My gp has no ideas

[cathybee1]

Our hematologist also knew very little about copper deficiency. There is a known connection between copper deficiency, anemia and neutropenia, but the significance of "somewhat low" copper levels is controversial. Bruce's ceruloplasmin level hovers around 14, and copper around high 50's to low 60's. His zinc level has usually been in the normal range Our gp was initially much more interested in the copper deficiency than the hematologist. Bruce started with oral supplementation (the same supplements that Greg mentioned) and when Bruce failed to respond to those, the gp began copper injections. Bruce had "push IV's" (given by syringe) at the doctor's office until his veins started to go, then he had a port-a-cath installed, and I was able to administer the injections at home through the port. Bruce did this for about 6 months, but was unable to raise his copper levels. He discontinued the injections and returned to tablets as well as a liquid oral copper sulfate supplement. He does not take any supplemental zinc except what is in his multi-vitamin. A month ago, his copper level was at 64.

The Mayo Clinic has had some success resolving anemia in their copper deficient patients, though most described had extremely low copper levels. For us, the trick was getting our hematologist engaged at all. We live in California, Bruce's hematologist is in southern Oregon, and the communication with the doctor at the Mayo Clinic was by phone. That may be an option you can ask your doctor about. We kind of wore the hematologist down until he agreed to call Mayo. Wake Forest in North Carolina also has done some clinical studies on the copper/anemia connection. I know that's not very close either, but at least in the same time zone!

Another test not mentioned you should discuss with your gp is one for celiac disease.