4

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Evaluating immune system?

Answered on August 19, 2014
Created March 24, 2012 at 6:56 PM

My lymphocyte count has been depressed for at least the last couple years. So far no cause has been discovered. The main evaluation I've had done is screening for lupus and Hughes' syndrome (various antibodies, CRP, ESR, lupus anticoagulant), which has all been negative/normal so far. I have done some testing on my own, which has turned up that my estradiol, testosterone, and DHEA-S levels are all low.

I would like to get some more information about what is going on immunologically and see there are some tests for checking levels of various Th1/Th2 cytokines and breaking down lymphocyte counts by t, b, and natural killer cells. These tests are fairly expensive and the scope of the tests that check these things seems to vary significantly, with some not covering various cytokines or other immune components. I have money but would prefer to spend it well on the best quality tests and advice.

Could anyone here suggest what type of practitioner would best be able to help with me something like this, or, failing that, what tests I would be best off ordering myself?

I am usually in the UK if that matters, but I make frequent trips to the US.

I will ask my GP, but I am unsure if he can be helpful due to the scope of his practice and knowledge and NHS testing guidelines. Based on my symptoms, I could probably get a referral to a dermatologist, rheumatologist, or possibly endocrinologist, but I imagine it will be difficult to find a practitioner interested in narrowing down what is abnormal as opposed to focusing on suppressing symptoms addressed by his or her speciality. I will also need help interpreting the results, which I imagine will require a scientifically-focused practitioner.

Thanks for any replies.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 05:36 PM

Huh, oxygen deliverability issues would explain my intolerance to cardiovascular exercise and why I was turning grey-purple when trying to run. I guess I should tell my GP about that, though at this point I probably sound like a hypochondriac. It is pretty easy to see a specialist in the UK. I can get private or NHS referral from my GP as long as I can make a sane case that I should see someone. Often you end up seeing the same doctors on NHS or private healthcare, but the private waiting times are shorter.

518bce04b12cd77741237e1f61075194

(11577)

on April 01, 2012
at 02:36 PM

Is it hard to get on the list for a specialist in the UK? I'm from Canada, so I'm not familiar with either the UK or US medical systems. Here I can pretty much go to my doctor and get a referral then get the testing done while on the waiting list- there doesn't have to be any real "evidence" that I have a condition, it's more of a "let's check it out" appointment.

518bce04b12cd77741237e1f61075194

(11577)

on April 01, 2012
at 02:31 PM

Yeah, just from a brief overview, I would follow up with your GP and try and get a recommendation for a specialist. The combination of low lymphocytes, low platelets, and fatigue (which can mean low oxygen levels in blood) sounds like a pretty good indication for a possible blood disorder which would be beyond the scope of a GP practice. Even if you are low on the waiting list for a specialist, at least you can get yourself in the mix right now so it won't be too far off for an appointment.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 05:04 AM

Part of the problem is that I'm not sure that my GP knows what to do, and am kind of expecting to hear something like 'your symptoms aren't my-specialty-ological in nature' at the specialist level.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 04:59 AM

Maybe this is a dumb question, and I should really just be following this up with my GP.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 04:58 AM

(con't) He has mentioned a possible referral to a rheumatologist, but this seems unlikely to be fruitful with no evidence of autoimmune disease. I am also seeing a derm soon, but I believe the derm is likely to write a prescription with little workup/ddx. Symptoms are malar flush (sometimes severe but rather better lately), hypertension, almost always tired, low platelets, low lymphocytes, low testosterone, low DHEA-S, anxiety.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 04:52 AM

Hey, thanks for the replies, I really appreciate it. I probably should have provided some context about my health state, since my question is rather weird without that. Yes, my lymphocyte count is low according to the reference range and according to my GP. He believes it is an indication of a problem, and has screened for SLE (all tests negative/normal so far) and has also mentioned that he has many patients with low lymphocyte counts who have recurrent infections and CFS-type symptoms. Based on my symptoms, he believes I have SLE and that it is just a matter of repeating tests until proven.

F2f559fe327007fd064a0f5bd79d6278

(156)

on March 24, 2012
at 11:36 PM

Good to know it isn't just me... Have you been able to figure out much about what is wrong so far? Have you been able to find helpful doctors?

293ba4c95d190bc616b27d85b10d705a

(661)

on March 24, 2012
at 08:05 PM

Good question. I have a similar problem

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2 Answers

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1
518bce04b12cd77741237e1f61075194

(11577)

on April 01, 2012
at 04:16 AM

As far as immune system physicians go, there are several types depending on the problem: allergy/immunology, rheumatology, hematology/oncology, and some internal medicine specialists. Because you are concerned about lymphocytes, I would say the "blood doctor" or a hematologist would be the next best option for you.

Is this something you've already discussed with your GP then, seeing as you have already got some testing done? Because there is a range which is healthy, and if it reads low to you but your doctor thinks it's fine, that may be because it is within the healthy range. Not everyone is going to be identical, so a conversation about what range would be good for you could settle things before a specialist appointment. The important gauge of if your lymphocyte count is consistently low is if you get sick more often. You didn't mention your health state, but if you do think you have a decreased immunity and are vulnerable to illness and infection, than this is definitely worth pursuing.

Ordering the tests yourself will not only be pricey, but will also have to be interpreted properly, which is obviously the most important part. I know that doctors get a bad rap on these kinds of forums, but most specialists are very passionate about their field won't just "cover up the symptoms" as people like to say. I've seen quite a few specialists, and of course a few are duds as with anything, but a vast majority were very invested in getting to the root of my problems (mine were cardiac, so different, but still specialized). I mean, this is why they trained for so long- to run the tests, look at the numbers, and figure out what they mean. This is what you need, so I would go this route rather than running at it yourself and being stuck with having to interpret.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 05:04 AM

Part of the problem is that I'm not sure that my GP knows what to do, and am kind of expecting to hear something like 'your symptoms aren't my-specialty-ological in nature' at the specialist level.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 04:59 AM

Maybe this is a dumb question, and I should really just be following this up with my GP.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 04:52 AM

Hey, thanks for the replies, I really appreciate it. I probably should have provided some context about my health state, since my question is rather weird without that. Yes, my lymphocyte count is low according to the reference range and according to my GP. He believes it is an indication of a problem, and has screened for SLE (all tests negative/normal so far) and has also mentioned that he has many patients with low lymphocyte counts who have recurrent infections and CFS-type symptoms. Based on my symptoms, he believes I have SLE and that it is just a matter of repeating tests until proven.

518bce04b12cd77741237e1f61075194

(11577)

on April 01, 2012
at 02:36 PM

Is it hard to get on the list for a specialist in the UK? I'm from Canada, so I'm not familiar with either the UK or US medical systems. Here I can pretty much go to my doctor and get a referral then get the testing done while on the waiting list- there doesn't have to be any real "evidence" that I have a condition, it's more of a "let's check it out" appointment.

518bce04b12cd77741237e1f61075194

(11577)

on April 01, 2012
at 02:31 PM

Yeah, just from a brief overview, I would follow up with your GP and try and get a recommendation for a specialist. The combination of low lymphocytes, low platelets, and fatigue (which can mean low oxygen levels in blood) sounds like a pretty good indication for a possible blood disorder which would be beyond the scope of a GP practice. Even if you are low on the waiting list for a specialist, at least you can get yourself in the mix right now so it won't be too far off for an appointment.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 04:58 AM

(con't) He has mentioned a possible referral to a rheumatologist, but this seems unlikely to be fruitful with no evidence of autoimmune disease. I am also seeing a derm soon, but I believe the derm is likely to write a prescription with little workup/ddx. Symptoms are malar flush (sometimes severe but rather better lately), hypertension, almost always tired, low platelets, low lymphocytes, low testosterone, low DHEA-S, anxiety.

F2f559fe327007fd064a0f5bd79d6278

(156)

on April 01, 2012
at 05:36 PM

Huh, oxygen deliverability issues would explain my intolerance to cardiovascular exercise and why I was turning grey-purple when trying to run. I guess I should tell my GP about that, though at this point I probably sound like a hypochondriac. It is pretty easy to see a specialist in the UK. I can get private or NHS referral from my GP as long as I can make a sane case that I should see someone. Often you end up seeing the same doctors on NHS or private healthcare, but the private waiting times are shorter.

0
07c86972a3bea0b0dc17752e9d2f5642

on March 31, 2012
at 02:30 PM

Try a hematologist/oncologist.

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