Help with Hughes/Aps and Symptoms

[sloppydog]

I have had a long battle with my health and was diagnosed with The big 3 By Prof Hughes (Lupus, sjrogens , Hughes) + Hashimoto's a while ago although he retired and I went to see another doctor that discounted his diagnosis, my results were as follows:-

3 x positive Anti Cardiolipin Ab's

Anti Beta 2 Glycoprotein IgG - Above High Reference Limit

Anti Beta 2 Glycoprotein Igm - Above High Reference Limit

Anti Nuclear Antibodies - 1:320 Positive Speckled & Diffused

Thyroid Globulin Antibodies (TgAb) 658.4 (Ref Below 20)

I also have addison's disease

My symptoms are so bad now I am in bed and am not on any treatment other than thyroid medication and Hydrocortisone for addison's. Prof did want me on Warfarin but the new doc said no

I am trying to see what symptoms relate to what and am wondering how APS/Hughes presents? My symptoms are:-

* I can no longer walk but a few steps as the pain in my knees and muscles are so bad and any exertion is like I have run a marathon

* My Fatigue is like nothing you can imagine

* My skin burns like it is on fire from my back all down my legs, I can not sit lie or stand I can not even stand the bed clothes on my legs

* On a good day I could manage to go out to lunch and then right back to bed

* My feet and mouth burn and then I know I am in for a very bad flare

* My throat is very bad (I think this is Hashimoto's/Thyroid)

* I can not take Plaquanil as I with highly allergic

* I have declined year by year and to a point of disabled but have no Idea how to get back from this

I am more interested to see if anyone has a Hughes/Aps symptoms list to see if any of the above are related to this

Thank you for listening and reading this

[sloppydog]

1. Have you had your Vit D, B12, Ferritin and Folate tested. *YES all replaced and in good range

Also as you say you have Hashimotos, what thyroid medication are you on and when was your last test done where they tested your FT3 as well as FT4? *YES - This is the only thinh I know inside out as I worked in Endocrinology for many years - I am on T3 only and have been since 2005, have a genetic conversion defect so can not take T4

2. Find another Lupus/APS specialist. You are double positive for the antibodies for APS and also positive for Lupus. Just because you have not had any clots you want to keep it that way! Its possible that your primary is Lupus as 1 in 5 Lupus patients are also positive to the APS antibodies and Aspirin may be something that they will recommend. *I agree but finding one is like hens teeth!!!

Are you Gluten Free? * Yes Totally Gluten Free and Lactose Free and eat everything Organic and stick to the 16/8 plan (so only eat between 9 to 5pm)

Prof Hughes recommends that even if you dont have a Gluten sensitivity that you still dont eat Gluten due to its inflammatory properties. Given you also have high thyroid antibodies too, thats another reason not to eat it. If you have any stomach problems at all however, do not stop eating it before you have asked your GP to test you for Celiac Disease.

Malabsorbtion and PA is something that is also common with Thyroid and lupus/APS and will make your B12 low. *B12 is very good

This can give rise to symptoms similar to those you are experiencing in some cases.

Hopefully once you have had these tests done either an Endocrinologist or a Lupus?APS specialist will be able to guide you further. *I am under an incredible Endo, just need to find a APS/Lupus specialist

Thank you for your detailed reply x

[HollyHeski Administrator]

Hi and welcome, I'm so sorry you are not being looked after and being left to cope alone. What team are you under?

It may be worth posting this on the sjogrens forum too, as many of your above symptoms could relate? (I have primary APS and secondary as and can relate to some of your symptoms).

[MaryF Administrator]

Hi and welcome, I agree with the advice you have been given and would have said something pretty similar. A lot of us have to regularly do our own Thyroid tests, I am one of those and re test every 3 months to see what is going on. We have lots of specialists listed on the forum over under 'pinned posts' on the right hand side, and more on our actual charity website: ghic.world/ I also have these three plus I found out I had low B12 like my children plus several other diseases. Due to my mast cell disease, I can't tolerate many medications so take an alternative that I fund myself. MaryF