autoimmune musings

[chalup]

I have been thinking and making connections that I am not sure are valid. I am looking for opinions here not diagnosis. I was first diagnosed with type 2 11 years ago but just over the line so to speak with an A1c of 7 or so. On the same day I was told that I had gone from a normally cycling 37 year old woman to post menopausal hormone levels in one month. Nothing further was done to investigate that. I have several severe autoimmune conditions as well. I did some research and started low carbing and my BS fell right into line in the 4-5.5 range within a couple of days, the weight fell off and I was soon declared in remission. Right about this time I started on a series of biologic medications to suppress my immune system and try to slow the progress of my arthritis and psoriasis. 6 months ago I lost access to these immune modifying drugs and both my skin and joints went insane. Unfortunately so did my diabetes with an A1C of 10.5 and at least one BG of 26. This time despite very strict low carb, metformin, and forxiga for the last 3 months, my sugars are not falling to where they should and the weight is not coming off. They are better but not ideal. Now the question for your consideration.

Is it possible that I actually have Lada and the immune modifying drugs have slowed the progression for 10 years? Could it be that now that those drugs have cleared my system the immune attack has resumed? I am fully aware that no one here can diagnose and I will be seeing an Endo as soon as possible for testing but that can take months. I am just curious if this scenario is possible. I have been on methotrexate the whole time accompanied one after the other by amevive, cyclosporine, embrel, remicade, humira, and stelara. All powerful immune suppressants or modifiers. I look forward to any response.

 

[chalup]

Not one person willing to give an opinion? Well that is disappointing. Today I got my blood results after three full months of 2 meds and eating less than 20 grams of carb per day. A1c is still 6.7 and fasting glucose 8.3. CRP which measures inflammation should be less than 3 but is at 33. Hoping to get results from a c-peptide test soon. I also tested my meter against the lab and got 7.7 so my meter is reading .6 less than the lab which means I am doing even worse than I thought. I am feeling frustrated and a bit defeated today.

 

[carol43]

I'm sorry to hear of your struggles, unfortunately I am unable to offer any advice.

 

[sud5nala]

Immunology, my impression is this is one of the most mysterious areas of medicine.

One topic to try researching is genomics. Maybe a gene mutation is a partial cause the multiple immune deficiencies. If you haven't yet done so, I would look up some tutorial that surveys all autoimmune disorders and look for clues that you may have symptoms for disorders not yet diagnosed.

www.madgc.org.

2012. emerging patterns of genetic overlap across autoimmune disorders.

2012. the immunogenetic architecture of autoimmune disease.

When discussing testing for LADA, be aware there are four autoantibodies to test for. The test for GAD65 seems easily available, because my GP was able to order it. To get tested for the others, I would need to see a specialist, for which I have an appointment in 2 months.

 

[desidiabulum]

Definitely worth being tested for LADA, I would have thought.
But if you have a complex range of conditions and symptoms and the main issue is one of diagnosis, then it might be worth thinking about seeing a recommended endo privately. In the NHS you can just end up getting passed around department to department, all having to meet targets, it takes forever as you have to wait months for each appointment, and no one is willing or able to join the dots. If you see a specialist privately they can spend more time and care on diagnosis and of course you can arrange an appointment much more quickly at a time that suits you. I'm not a fan of private medicine, but for initial diagnosis (rather than costly and inefficient treatment) it can be useful and not very expensive, and you can end up seeing a quite distinguished specialist whom you would never get within a mile of on the NHS. It has worked brilliantly for me with 2 different health problems. Good luck!

 

[AndBreathe]

I have been thinking and making connections that I am not sure are valid. I am looking for opinions here not diagnosis. I was first diagnosed with type 2 11 years ago but just over the line so to speak with an A1c of 7 or so. On the same day I was told that I had gone from a normally cycling 37 year old woman to post menopausal hormone levels in one month. Nothing further was done to investigate that. I have several severe autoimmune conditions as well. I did some research and started low carbing and my BS fell right into line in the 4-5.5 range within a couple of days, the weight fell off and I was soon declared in remission. Right about this time I started on a series of biologic medications to suppress my immune system and try to slow the progress of my arthritis and psoriasis. 6 months ago I lost access to these immune modifying drugs and both my skin and joints went insane. Unfortunately so did my diabetes with an A1C of 10.5 and at least one BG of 26. This time despite very strict low carb, metformin, and forxiga for the last 3 months, my sugars are not falling to where they should and the weight is not coming off. They are better but not ideal. Now the question for your consideration.

Is it possible that I actually have Lada and the immune modifying drugs have slowed the progression for 10 years? Could it be that now that those drugs have cleared my system the immune attack has resumed? I am fully aware that no one here can diagnose and I will be seeing an Endo as soon as possible for testing but that can take months. I am just curious if this scenario is possible. I have been on methotrexate the whole time accompanied one after the other by amevive, cyclosporine, embrel, remicade, humira, and stelara. All powerful immune suppressants or modifiers. I look forward to any response.

chalup, to be honest I hadn't noticed this thread until now.

The methotrexate you are taking could well be impacting on your general blood work. I know a couple of folks who have taken it. One discovered his underlying issue (exhibiting all the horrid signs and symptoms of psoriatic arthritis) was in fact gluten, and once removed from his diet, his arthritis and skin issues disappeared fairly promptly. His need for steroid injections into particularly inflamed joints also vapourised. Allegedly, many experiencing arthritic symptoms, and skin issues together are gluten intolerant, but not necessarily coeliac. I don't know whether this may have been looked at for you? I would have absolutely no way of knowing how likely that might be for you.

Secondly, @poshtotty had astounding results from low carbing and got herself off Metho, and a further pile of meds, along with reducing her inflammatory markers significantly. Hopefully she will respond to the tag I have left.

Of course, as I say, I have no idea if this is a blind alleyway and I have no additional context around your speculation of LADA.

On the post-menopausal hormone front; I understand blood testing for hormone levels is particularly tricky in women in the early/peri menopausal age groups, due to their potential for variability (due to the peri menopause), and day to day fluctuations of their cycle. So, at times in their cycle when a hormone might be expected to be lower, they could be lower than normal. Only frequent and repeated testing would help really with an insight, and due Ito the expense of these hormone related tests, it isn't likely the NHS would support it. Indeed, whist my PMI provider offers exceptional cover, they flinched a bit on those, some years ago!

Good luck with it all.

 

[chalup]

Definitely worth being tested for LADA, I would have thought.
But if you have a complex range of conditions and symptoms and the main issue is one of diagnosis, then it might be worth thinking about seeing a recommended endo privately. In the NHS you can just end up getting passed around department to department, all having to meet targets, it takes forever as you have to wait months for each appointment, and no one is willing or able to join the dots. If you see a specialist privately they can spend more time and care on diagnosis and of course you can arrange an appointment much more quickly at a time that suits you. I'm not a fan of private medicine, but for initial diagnosis (rather than costly and inefficient treatment) it can be useful and not very expensive, and you can end up seeing a quite distinguished specialist whom you would never get within a mile of on the NHS. It has worked brilliantly for me with 2 different health problems. Good luck!

Hi
I am in Canada not the UK. Our system here is very similar but not exactly the same as you folks have. I will see my GP Monday and ask for a referral. I also live in a small, very rural town on the coast and it is a major trip to the city and an overnight stay to see a specialist on top of the waiting for an appointment. Primary care for diabetes here remains with your doctor and endo if you have one. The other specialists I see send all information and test results to my GP who coordinates. I also see a rheumetologist and a dermatologist regularily. We don't seem to have private as opposed to public health quite the way you do for the most part. If I could go the route you have suggested I would in a heartbeat though. Thank you for the suggestion

 

[Indy51]

If you haven't seen this video on the aetiology of autoimmune diseases, it's well worth watching. Dr Fasano is a paediatric gastroenterologist and autoimmunity researcher:

 

[tpaz]

I feel like a broken record saying this, but I was diagnosed as type 2, about 11 years ago and only found out I was actually LADA/type 1 last year. So I went 10 years without any meds or insulin. It's very, very rare, but it can happen.

 

[chalup]

Well the results of the fasting c-peptide test are in and my insulin is through the roof. It is twice as high as the high end of normal. 1754 pmol/L where normal is 350-1090. And this is after 3 months of very low carb <20 gram per day with no cheating as well as metformin and forxiga. So it is definitely type 2. Helps explain why my numbers are not cooperating like they should and the weight is being extremely stubborn. I am feeling very frustrated but knowing this is better than not knowing why.

 

[sud5nala]

Well the results of the fasting c-peptide test are in and my insulin is through the roof.

Try googling immunological insulin resistance.