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Immunoglobulins and Immunologists on the NHS UK

Discussion in 'Immunological' started by mermaid, Sep 18, 2015.

  1. mermaid

    mermaid Senior Member

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    Having had ME for around 10 years, I was only tested on my immunoglobulins for the first time this year as part of an appointment to see a gastroenterologist. I have to admit that this is a subject that I find quite hard to understand, (my science is pretty weak generally), though I have done my best to read up online and can kind of get the basics with regard to ranges etc.

    Like many with ME, I have frequent feelings of colds pending, and sore throats, though when I was tested I was just getting over bronchitis. I usually treat myself with Oil of Oregano which seems to help quite a bit.

    Anyway, my IgA was below range (not by a lot), and my IgG was only just in range, and IgM seemed OK. Also I noted that my liver globulin was below range (just) and had fallen by one point from the last time it was tested 3 years ago (I assume liver globulin is related to the other immunoglobulins but I don't really know).

    My GP has agreed for me to have a retest now 6 mths later, and admitted though that she probably would not know how to do an interpretation. I thought maybe that I could be referred to an immunologist but we don't seem to have one for adults in the whole of Cornwall if Google is correct! I could ask for a referral just over the border into Devon as there is a department in the Plymouth hospital. However it's a hell of a hike from my end of Cornwall and I would maybe need to stay overnight to get there.

    So....... is there any mileage in me doing this on the NHS? Would I get anywhere? Is it worth the hassle? Would I be laughed out of the surgery if ME got mentioned in my referral letter? I do have a history of autoimmune illness (hypothyroidism and Lichen Planus, and Thrombocytopenia in pregnancy), but have not had anything serious immune wise since childhood, other than getting whooping cough 6 years ago (gave me a relapse that still affects my function) and the bronchitis I had earlier this year. ie not had pneumonia since childhood.
     
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  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I would guess you wont get IVIG if you`re not symptomatic (e.g. recurrent infections).. Have you been tested for autoimmune illnesses?
     
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  3. mermaid

    mermaid Senior Member

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    I do get frequent infections but they tend to be minor (other than the bronchitis this year), and tend to be viruses, like cold type viruses, or viruses that are non specific. I suppose if my immunoglobulins are worse then the GP might be willing to monitor them for me.

    I have never been officially tested to see if my hypothyroidism is autoimmune, (have had that 20 years) but the majority of it is, and the Lichen Planus consultant I saw a few years ago assumed it was autoimmune because he said that if you get one autoimmune illness you tend to get others.
     
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  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Then if I were you i would lie and say they`re a major problem. Some ME-patients get major symptom relief from IVIG!
     
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  5. mermaid

    mermaid Senior Member

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    Ah interesting. That's the kind of thing I was wondering, if IVIG does help ME issues.

    Are you in the UK @Marky90 ? Just wondering what other people's experiences of immunologists are (if any) in the UK.
     
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  6. FliskFreya

    FliskFreya

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    Hi Mermaid,

    Am also in the UK but in Scotland, and have also had CFS for 10 years. I did see an immunologist locally when I had my first relapse, but was discharged when nothing immunological could be found. I don't, however, have a history of autoimmune disease.

    There is a national shortage of clinical immunologists in the UK, but in view of your history it may still be worth seeing one in Plymouth, although the waiting list may be long. Hope that helps
     
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  7. mermaid

    mermaid Senior Member

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    Thank you for your reply @FliskFreya I did not know there was a national shortage of clinical immunologists in the UK, so that and the shortage of funds in the health service especially in Cornwall may explain whey we do not have one for adults.

    I will need to have a discussion with my GP once my latest blood results come back I guess and see what she says. I do have a long history of immune dysfunction to use as my argument though.
     
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  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I`m from Norway :) In the process of obtaining IVIG. Not easy, not impossible.

    There are some conflicting studies on IVIG for ME/CFS Studie som viser signifant effekt paa ME ved IV gamma.png Studie som viser signifant effekt paa ME ved IV gamma.png Studie som viser effekt av gamma ved Parvovirus-indusert ME.png . Probably due to slack use of diagnostic criteria.
     
  9. mermaid

    mermaid Senior Member

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    Thank you @Marky90 for those studies. They could be useful to show my GP. I have some qualms about the immunologist knowing that I have a diagnosis of ME/CFS in case it puts him off! The GP could write and tell the immunologist anyway I guess but I may be able to dissuade her from doing so and to concentrate on the other stuff.
     
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  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    NP! Yeah if I were you I would not tell about the ME/CFS, unless the infection-route does not bear fruits.. :) That`s what IVIG mainly is given for. And from what Ive heard from england, it`s probably hard to get experimental treatment.
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear @mermaid,
    I think Marky90 is actually raising a confusion here. The evidence for IVIG being useful in ME has nothing to do with having low immunoglobulins as far as I know. IVIG is given for autoimmune diseases for completely different reasons and where the persons Ig levels are normal or even raised. We do not really know if IVIG is in fact useful for ME but it is a completely different issue to your Ig results and at present the general policy in the UK is not to give IVIG for ME.

    So if you have a problem with infections related to low Ig levels that has nothing to do with ME and should be assessed by an immunologist in its own right. However, it looks to me as if your immunoglobulin levels are normal. IgA is quite often low in healthy people and if it is only slightly below range I very much doubt an immunologist would want to treat it. It sounds as if your IgG is normal. Being in the lower half of the range is perfectly OK.

    So the real question is whether or not you have a serious problem with infections. It sounds as if you are unsure. I certainly would not follow the suggestion of pretending it is worse than it is. You are likely to get found out pretty well immediately and nobody will want to treat you.

    It may also be worth pointing out that IVIG, being pooled Ig from other people will contain quite a lot of 'anti-you' antibodies - effectively autoantibodies, because we all have antibodies to tissue type and blood group proteins that other people have and we do not. Unless you really need it I would personally be very keen to avoid it.
     
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  12. Ema

    Ema Senior Member

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    This sounds like it is the prevailing attitude in the UK, but @mermaid, you should be aware that it is not the attitude of immunologists the world over.

    Most competent clinical immunologists in the US think that levels below 600-700 mg/dl represent a nonfunctional immune system and would treat based on those levels. It isn't all about the numbers anymore; it's about what level an individual needs to feel well and for many that number is much higher than previously thought was sufficient.

    You might also ask to have your subclasses 1-4 tested. If two or more are low, that is also usually enough in the US to qualify for IVIG.
     
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  13. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Sorry if I was unclear, I didnt mean to imply that having low immunoglobulins have anything to do with the potential of IVIG for ME.

    Could you elaborate why you would avoid it? From my understanding side effects are usually mild, so in other words when you already feel miserable with ME, it`s not an issue..

    I agree that you are likely to be found out, but then again options are pretty scarce at this moment in time for ME-patients..That being said, when i tried to get IVIG the other day, I was completely honest with my reason for being there. That went quite well. But based on what ive heard about the situation in the u.k., it sounds unlikely to get a recommendation for IVIG for ME?
     
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  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    That seems to be an inconsistent response Ema. Firstly you say that below 600-700 represents a 'nonfunctional' immune system, which I suspect is nobody's opinion. You then point out that numbers are not what matter, which immunologists agree the world over and have done since I was a medical student. What matters is the clinical picture and the Ig level is then interpreted in that context. The paper you quoted last time about this was in a different context and to be honest I think it very unlikely that anyone would want to raise an IgG level that is already normal unless there was some major recurrent infection problem plus some other immunological deficit.
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Reactions to IVIG can be very troublesome - mild to moderate generalised allergic reactions are reasonably frequent. Of the two or three patients I had to give IVIG post rituximab one had a lot of trouble with reactions and we had great difficulty maintaining her Ig levels until they recovered. There is also the concern about transferring unknown infectious agents like prions or even known ones if safety procedures slip.
     
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  16. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I see. Would you say, based on your experience, that moderate to severe reactions are normal even with slow infusion rates? I`m asking cause the literature claims that its rare..
     
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  17. Ema

    Ema Senior Member

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    Actually, it is the opinion of my doctor, who is a well-respected immunologist in this country and a prominent figure in the IDF.

    The numbers are not what matter...once over 600-700. Most competent immunologists in this country agree that below that represents a dysfunctional immune system.

    The paper I quoted before simply pointed out that it is antiquated to use IgG levels *after treatment has commenced* to monitor treatment since the levels required to feel well are vastly different between patients.

    I've found many inexperienced doctors frequently overemphasize the risks of IgG replacement. It can be tricky in terms of side effects, especially when using IVIG as opposed to SCIG, but I've never heard of anyone getting an infection due to contamination or a "slip" in safety procedures. Quality standards are quite rigorous for IVIG preparations.
     
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  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Severe reactions are probably uncommon - if we are talking about requiring resuscitation. I have no information about infusion rates. It is not something I have been involved in myself.
     
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  19. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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  20. Ema

    Ema Senior Member

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    Slowing the infusion rate typically does lessen the side effects of IVIG.
     

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