Hello again
@Learner1 Sorry not to reply before, but I thought I would wait for my latest Immunoglobulin test to come back before I replied.
I was very interested in what you had to say about your own story, and it sounds as if you have a very supportive and helpful expert CFS doctor there. If only there were some like that in the UK! I did pay to see a private Dr in London a few years back but it got too expensive for me, and also he was so far away, and quite limited in his understanding, although better than someone in our standard free health service.
I did look up the Common Immune Variable Deficiency. I am not sure that I would qualify. I did have a lot of illness as a child, but apart from getting pneumonia once, I don't remember getting anything very serious until I got glandular fever at aged 13. Well I had a lot of sore throats and colds, and childhood illnesses, but I don't remember having a lot of time off in my teens, and my immune issues improved a lot once I left home!
Things began to deteriorate in my late 40s again, but even then it's just kind of low grade stuff that is persistent but not severe. I do use Oil of Oregano at the first sign of anything, and I feel sure that helps me and I have managed to avoid using antibiotics for many years other than for a dying tooth.
Still, my latest test has just come back looking a bit worse and I have now dipped into the just below range with the IgG, and am still below range for IgA (same as 2 years ago). IgM is OK. I do have an appointment to discuss this with my GP now and will ask if she can test the subclasses when I see her and print some stuff out as you suggested - thanks!
I was particularly interested in your thyroid experience with possible regards to your osteopenia, as like you, I was on T3 only for 4 years and also have Hashimotos! I had previously been on T4 only for 17 years, but shortly before I went onto T3 only I happened to have a heel density test done privately and it showed low risk for osteoporosis with -1.1. Then 2 years later I went onto the T4 for the 4 years, and then was sent for a DEXA scan which then showed -3.2 in 2 areas, so that was a bit of a shock as not just osteopenia but osteoporosis. Obviously I cannot be certain about that heel test as it's different to a DEXA, but I have to accept that there may be a link. Patient groups do not agree that T3 usage can lead to osteoporosis and there is a lot of disagreement between patient groups and the 'experts' on the T3 issues I have found.
I am in the midst of going T4/T3 but phasing it in slowly until I end up with just 20mcg T3 and probably 75 of T4 but I am worried that it's adding to the immune problems as I said, as they have got worse since I began to do this journey, but I guess it may settle down again. My hair has fallen badly too.
Are you post menopausal too? (I assume you are female but you may not be of course!). I understand that there can a big loss of bone just past the menopause before it then settles down, however I had been through this phase as by the time I lost the bone I was over 10 years past menopause. Unlike you I did not do weight lifting which I have read is useful for keeping bone, but had done plenty of weight bearing over the years, with walking and gardening, and some dancing.
I am glad to see that your CFS doctor has picked up on your pituitary issues though... I don't know a lot about that although I did have a calcium test done as I believe if it's high that a clue of problems with it and mine was normal. Obviously in my case my oestrogen levels would have fallen a lot and I am 15 years post menopause so a bit late for any kind of hormonal interventions, but I do take bioidentical progesterone now (but have been told it's not enough to help with the bones by someone). I am also taking an array of supplements for the bones now including Boron, and Strontium Citrate, and my herbalist is also giving me some herbs too.
I looked into MCAS myself last year (just researching online not going further) as I had some signs of it. It seems to have settled down thankfully but there was definitely an issue with histamine and I had to stop using Kefir as that was causing me problems, and there were some other histamine problems too. I also had a few odd signs but nothing too much - I didn't have rashes. I try to keep my histamine intake lower and that seems to have solved my problems there.
Thank you for all of your input. Very much appreciated. x