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ACE Level at 161

carol101
1 Recommendation

Received the results of my latest blood test but no one has told me what to do just noted that it is very high at 161. Prior to the latest results the GP wants me on prednisolone for life and the lung specialist says not to take anything unless I feel I have to.
I am tempted to just go on doing nothing but on reviewing early discussions on ACE levels this does seem quite high should I be back onto the prednisolone which does make me feel better but also makes me look like a blimp.
Thanking you in anticipation of sound advice
Regards
Carol

Explore topics in this discussion:

Pain Prednisolone Prednisone Neurosarcoidosis Sarcoidosis Methotrexate Diabetes

18 replies

mrsbias

I often hear ya'll speak of ACE levels....and yet I am clueless...I don't even remember seeing ACE EVER on either of my bloodwork results...where are you all getting this info...please excuse my lack of knowledge but I want to know. And from what I am assuming yours ain't good.

rarity

Angiotensio converting enzymes are a good measurement especially at your levels of having an active sarcoidosis involvement. Normal is 40 - 50 diabetes can put this number a bit out of whack. I am one of those who believe that pred is extremely important to stop this systemic involvement the later you leave it the more catch up is needed later on.

mrsbias

Is this some sort of test that I should request????

Mani

carol101

I went 3 years untreated for sarcoidosis involvement of the lungs, sinuses, abdomen, and finally after 3 years was put on pred and methotrexate and STILL ended up with neurosarcoidosis, so my suggestion is to not worry about looking like a blimp, (just look at my profile pic) if you have to take the medicine take it, if you are feeling unwell.

Take care,

Mani from Canada

kooks

Here is a site that might help you mrsbias. Not all doctors like to go by those levels years ago they used it more but you can still request to have it done. Hope this helps.

http://www.labtestsonline.org/understanding/analytes/ace/test.html

Connie

mrsbias

Kooks...thank you...and I am gonna copy this and mention it to my docs and request that this is what they do!!!!

mrsbias

Seems like to me if they know I have sarc...and I keep complaining about pain and new symptoms ...and they have sooooooo much knowledge of sarc....I would think I would have been had this done...you know my husband and I kept wondering too why they never asked me for a urine sample...not once!!!! Just keep giving me the average test for a not so average illness!!!

priscurl

Hi Carol,

That is an extremely high ACE level. You may have a higher than normal ACE level to begin with, however, even allowing for that, yours is still very high.
Where have you got sarcoid, and how long have you had it?

I find that if lung specialists believe all the PFTs are normal, then there is absolutely no reason to treat anything. Lung specialists only care about the lungs, but sarcoidosis is a systemic disease and a lung man should never be the team leader of your treatment team. May I suggest some further tests which can help you and your doctors to decide whether to treat or not treat?

I would suggest you get a full biochem screen including albumin, globulin, calcium, corrected calcium and phosphate, plus a full blood count with sed rate. I would also suggest a CRP, vitamins 1,25D and 25D, Parathyroid hormone level, thyroid function tests and a urine calcium level. With an ACE as high as that you need to know how much inflammation is in your system. The CRP, sed rate and 1,25D can assess whether inflammation is consistent with your high ACE level. Sarcoid can upset the calcium and vitamin D metabolism - which is a feature of the inflammation. This will pull your bones out through your urine at a much faster rate than prednisone will. The 1,25D, 25 D, parathyroid hormone, calcium, corrected calcium and phosphate, as well as a bone enzyme called alkaline phosphatase, which should be included in a biochem screen, together with urine calcium, will assess whether this system is going awry, since sarcoid inflammation can cause this system to malfunction. Such a malfunction could be consistent with a high ACE.

Full blood count can assess whether your bone marrow and spleen are affected by inflammation. Active sarcoidosis tends to suppress the numbers of a white blood cell called a lymphocyte and increase numbers of another WBC called monocytes. A low blood platelet count could indicate spleen problems. The biochem screen can assist in seeing whether there is any problem with the liver, a common site of sarcoid inflammation, and if the kidneys are functioning correctly.

TFTs will assess thyroid function which is often compromised in women with sarcoidosis. Might I also suggest a prolactin level, as the pituitary gland can be affected, but prolactin also rises with excess inflammation.

These tests can help a doctor and you decide whether or not you want to take prednisone. Some doctors are not aware what the results actually mean, sad to say. I have learnt this over this years. However, as a former lab technician working in pathology, I had a head start at learning to interpret results for sarcoidosis. Many doctors are not even aware lymphopenia is a common finding in patients with sarc. Never assume doctors know what your results mean, they often rely on comments from pathologists and radiologists. For instance, if you vitamin D is low and the pathologists says you have moderate deficiency, they may not be aware that sarcoid lowers vitamin D by means of the disease process. In this case, the pathologists assessment is incorrect if he hasn't taken other test results into account. So you need to be aware doctors sometimes cannot interpret tests and x-ray for your illness. You must educate yourself not only about what is normal and abnormal, but what are signs and indications specifically for sarcoidosis.

If you are an African-American the chances that your sarcoid will spread are far greater than if you were white. If you are white of Scandinavian or Irish descent, you are at greater risk than other whites.

Pris

gonenatural

I just want to take a moment to say thank you Pris.
You are a huge help on this site.
GN

gonenatural

hi mrsbias

I just want to let you know that not all sarkies have a high ACE level for some odd reason. you can still have sarc but your level is not high or not high at the moment the blood is drawn.

hope that helps ya some
gn

00Goose

Carol

I couldn't give any better advice other than priscurl's. If you do all of that, it should give you a much better "picture" of the state of your disease.

Mrsbias

ACE tests are just indicators of sarc and, as far as i know, don't say much. As gonenatural has said, ACE results vary in sarc patients, for some unknown reason, which is why it is regarded as an indicator. Also, although we have learned a great deal about sarc, and other diseases at that, there is still little known about them. Sometimes it's hard for doctors to stay up to date with all the information that's coming out that's coming out almost daily. So I suggest you follow your symptoms, tests and diagnoses and discuss it with your doctors. A good doctor will never be offended to be questioned and more than likely appreciate that you're taking an interest in your health.

Goose

mrsbias

Priscurl....WOW...thanks for all the info. I will get a copy and keep reading it until I receive full understanding of it and will mention it to both my docs. I really love this site and everyone on it...you guys and gals mean so much to me!!! I really don't know how I would make it on a normal day without God and ya'll.....MORE LOVE to each and everyone of ya'll.....THANKS

Krissy

Wow! Someone who has a higher ACE level than me!

Mark_K

I was told that normal is between 0 and 10, usually around 5. I was up at an ACE of 300 at one time, but that came down to normnal. Still got sarcoid, but my ACE is normal.

Mark

rarity

Someone has your ACE's a little out of whack four aces is okay in poker but lousy in angiotensin tests. Don't believe me try a Google and I am sure somewhere in there they will tell you the same thing. However we all have different normals but yours is a very weird normal but then think of who is considering your normal as weird the king of insane.

carol101

Thankyou everyone for the information.
Priscurl I am going to print yours out and take to my GP it seems that I am paying a fortune for blood tests and still don't know exactly what they are for. A stupid mistake on my part as all they tell me there is inflammation present.
I know it is in my eyes, sinus, the underneath part of my skin (causing a lump) and lymph nodes around my lung, I think it is in my spleen. I also think I will start on prednisolone again it did slow it down the last time.
I cannot believe I have been so passive about this and not asked for copies of all tests normally I am a bit of a control freak.

Thankyou again for the information and inspiring me to take charge of my own illness.
Carol

IamGrateful

A wealth of information is being shared about the ACE test. My doctor stated he would do blood work to determine if my sarcoid is out of remission. ACE is probably the test. I learn so more much from this group. Thanks

Jackieaw

In 1993 when the doctors found Sarcoidosis in me it was already very bad. My ACE level was a little over 300. Oh and I just got my voice back a couple of weeks ago. It was gone for two and a half months. Take care all.

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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