Questions

[phirestar]

At 68 just had DRVVT test 56 (<40). PPTla under range. I’m hypo/hashi dx’d at 65. Reacted to first 2 thyroid meds for just over a year. All were firsts at 65/66 and research indicates they were t,b, and mast cell activated. 4/16 I was put on Tirosint and for the last 2 years no reactions and no new ones have surfaced. I had 2 retinal migraines just after starting Tirosint in June 2016. They presented differently but was blind in l eye for about 3 minutes. I had a quasi seizure about 3 weeks after starting mylan levo which the UR wrote up as dizzy. Me: I know what dizzy is and this wasn’t it. Since I seem to be asymptotic, I decided to do 23/me in 2017. My biggest surprise was that I’m a carrier of sickle cell trait (Caucasian). As I’ve discussed this w various docs, they all seem surprised. I had no known medical allergies prior to 65. Presently my file shows mylan levothyroxine, synthroid and omnipaque 300. I have a snp that is called APS trait. I also have snp that says likely to have multiple chemical sensitivity. I was referred to a Hemetoligist and rheumatologist. I’ve seen the Hemetoligist but the rheumatologist refused the referral as this is a blood disorder and ‘you feel fine’. The Hemetoligist didn’t recommend anything and no further blood work. I’ll answer any questions. My questions are:

1. Is it possible to trigger APS from the drug reactions?

2. I read a research article that suggests it’s possible to trigger APS w gram negative bladder infections. This was one of my reactions. I had 2 back to back bladder infections and it took about 2 months for my ‘normal’ function to return. Is this a possibility?

3. Does having sickle cell trait have any impact on APS?

4. Is there any blood work that should be monitored and if so, what?

I’m in the US and all dx are from labs.

TIA

[MaryF Administrator]

Hi a multi chemical sensitivity is not unusual with autoimmune conditions. redalyc.org/html/559/559499... I have Stevens Johnson Disease as one of mine, it is now a bit better behaved since treating my thyroid, I used to be completely at times house bound with allergies, giving up gluten also helped, plus being on Low Dose Naltrexone, two of us administrators on here, are taking LDN, but it is something usually not provided by the NHS. Keeping an eye on all levels of things such as Iron, D, B12 and Thyroid function is very important. Alongside other tests. MaryF

[phirestar]

Thanks for the replies. Doc didn’t order any more labs.

[GinaD]

Have you tried tweaking diet? Such as a 6 week detocification diet which involves eliminating common immune systen provocateurs such as gkuten and soy. Thrn one reintroduces slowly and can identify previously disguised health villeins ( This process is more efficient if working with an alternative med doc.)

[phirestar]

Thanks for the reply. I don’t eat soy never like soy stuff. I don’t have gut issues and after doing lots of research on food, I’v come down on the side that organic is what I grew up eating. So now, I eat primarily organic. The only time n my life that I had gut issues was 8 months after starting mylan levo and I ended up w 2back to back bladder infections (a first at 65). My liver tests are good. I’m under the impression that if there are gut issues, this is effective at identifying potential food related issues. I’ve done some of this and so far I can’t identify any associated food issues as there is no change between eating them or not.

[Lure2]

Have you done all three antibody-tests again?

Kardiolipinantibody-test, Beta-2-glycoprotein-1 and finally Lupus Anticoagulation-test are those needed.

Kerstin in Stockholm

[phirestar in reply to Lure2]

Interesting story. I got a referral to a hematologist and rheumatologist. The Rhuematoligist refused to see me bc this is a blood disorder and ‘you feel fine’. The Hemetoligist didn’t order any other labs even though I asked. His response was well just watch it. No meds either. After seeing him and his office, I suspect his concentration is in oncology. He also wasn’t aware of the trait issue that may be associated w APS. I’m also a carrier of sickle cell trait (both the former and later from genetic uploads), also unusual as I’m Caucasian female. my primary doc scheduled an appointment to follow these 2 appointments. I’m going to see if I can get her to order them. I haven’t been able to find info on what a negative PPTla and positive DRVVT might mean other than one is associated w factor v , the other w factor x. I got the impression that he wasn’t aware of either association.

[Lure2]

If i were in your shoes I would listen to what the others have said as they know this illness very well!

It is a very tricky illness and the trouble is that so very few Doctors know what it is and therefor are "afraid". Therefor we need a Specialist of autoimmun illnesses who knows APS and who has had patients like us before with ev "cousins" like Sjögrens, Thyroidea. Estimated 25 % of patients with SLE (Lupus) also have Kardiolipinantibodies.

Kerstin in Stockholm

[phirestar]

Thx. I’ve joined several groups and attempting to increase my knowledge- google is my friend. My conversation w my doc should be interesting.