Collecting research/knowledge

[phirestar]

Medical history practically nonexistent prior to 65. Dx’d hypo (2015) of blood test and started mylan levo. First reaction in eyes and a sort of full body cascade continued for 8+ months. Stopped meds - reactions stopped. About 2 weeks after starting mylan levo I had what I described as a quasi seizure - no stroke symptoms. Started synthroid and more reactions. After 5 months started tirosint and after 1.5 months all reactions stopped and have not resurfaced. I’m asymptomatic for hypo/ hashi (dx’d during mylan reactions) and thyroid meds were the only thing I was taking until 11/2018 when statin was started. Switched Medicare plans for better docs knowing I would not be able to get tirosint but could compound t4 in an olive oil suspension. 4/2017 did efudex for a couple of ak’s on nose and follow up was done by new plan docs. I haven’t healed like most so she ordered a couple of lab tests. All were negative except DRVVT which is positive and over range - a bit unusual at my age! Bc of my reactions to the thyroid meds and having no symptoms to chase for labs, I opted to do 23/me as I felt it would provide better insight 3/2017I was not disappointed as I am now continually referring to it for meds and other things. I’m Caucasian and I’m a sickle cell carrier as is my daughter. Genetically, I lack the enzyme for processing warfarin. I was put on low dose aspirin (11/2015) for sed rate but started bruising to the point that my thighs looked like someone had taken a baseball bat to them. I stopped and the bruising stopped. So questions:

Alternatives to aspirin?

Cardiologist wants me on a Mediterranean diet, pcp wants to avoid gluten, soy, sugar, corn. No gut problems so I eat organic but never liked soy and I eat a lot of salads. Any thoughts here?

Does having sickle cell trait influence having APS?

My understanding is that APS is related to factor x in clotting. Is this correct?

Can APS be triggered by my thyroid med reactions ( I have one upload that says I’m an APS carrier - described at APS trait)?

Should I request a hematologist, rheumatologist or an immunologist?

I’m an outlier and totally asymptomatic with slightly elevated (just over/under range but with statin cholesterol is now under range but profile follows an APS profile (research). What might improve this?

TIA

[MaryF Administrator]

Hi I am on a Mediterranean diet, lots of oily fish etc and many salads and fruits, I don't eat any junk and keep sugar to a minimum, I exercise daily and take a host of supplements. The trio of disease is often Hughes Syndrome/APS, Sjogrens and a Thyroid problem. It is vital that you have a specialist who fully understands Hughes Syndrome/APS. Several are listed on our charity website: ghic.world/

If you are intolerant to Aspirin and Warfarin there are alternatives, however as mentioned above, you do need a specialist with the right knowledge. If you state where you are located, other members on here will tell you who they see.

I don't think your condition would be triggered by your Thyroid reactions, but probably anything making you unwell could make your autoimmune condition flare. If they are doing blood tests do make sure they look at your D, B12 and Iron in addition to the usual Hughes Syndrome/APS tests and your regular Thyroid checks.

MaryF

[Wittycjt]

Are you diagnosed with APS? And how... did you have any symptoms, clotting, what occurred to have you check things? What’re are you located? This information can help us to help you welcome, Cindy😁