I have been having a very hard time with my APS. I feel so bad most mornings I don’t even want to get dreased all I want is lay down and if possible sleep. My INR is back to normal but this constant pain and exhaustion is really getting me down. I have All 3 of the APS blood disorders plus 3 additional and one DNA mutation all causing blood clots. I had been having multiple tia’s Daily until I had heart surgery to close. Couple holes n my heart that we’re facilitating many many more blood clots then average APS. So by the time I was diagnosed I already had multiple areas of damage in my Brian, 2/3’rds of right lung is closed off do to untreated PE, I have major damage to eyes, and neurological system as well as some demylabting if nerves in my brain. Any ideas?
My oldest daughter will be leaving the home to move 1000 miles away and I can’t manage to do anything with her but watch movies. This it breaking my heart and prob hers to even though she understands. I take my meds as directed. I have asked my dr for something to help me with energy but she has yet to do so. Any suggestion?
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SoulRebel-APS
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HI, sorry that things are currently tough, I may have suggested this before, but have you considered ordering your own panel of tests, as so often low levels of things make our existing autoimmune diseases even worse. You could order a test like this, if you are not on Thyroid medication, and if you are you could still do that but also add on a Reverse T3 test, so often if our levels of D, Ferritin, Folate, B12 and Thyroid are low, this can cause people to feel very very ill. At least you could rule some things in or out. medichecks.com/thyroid-func... Unfortunately often the GP or hospital do not do such detailed tests which is why some of these symptoms can slip through the net!
Also perhaps consider a check up with your consultant, after you have done the tests, as that would give you something to go on.
I thought of you yesterday... we drove through Roswell on our way up to the mountain. Our son and all his cousins- a gaggle of teenage boys ( and of course their fathers!) are hitting Sierra Blanca for the last spring run. 24 inches of new snow expected starting now through Wednesday/ Thursday!
As we drove through I was wondering how you were. We’re your ears burning?
( maybe every thing in your body was burning else from the sounds of things... ouch. Not doing very well it sounds like. )
I don’t believe we have anything like the Medichecks the way the UK has. My doctors have not mentioned it. There is a basic tryroid test, but I ask for the , “ more in depth “ tests to be run.
Just ask your gp to show you a lab requisition form. ( lab order.)
Look over it with him. Mention the items in the pinned post section under mineral and thyroud tests. Mary has mentioned it above in your post here as well.
I have been trying to get the proper thyroid testing but my Dr. always write for TSH, even after I asked for the other test such as T3. My dr herself has to have the actual thyroid testing as her thyroid issues are not noticeable in a TSH!!!!
Spring snow?? We are in Autumn and it was 37c (98.6) yesterday with a few more hot days to come - starting to really believe in Global Warming!! It has been a looong hot summer.
Well, it’s typical in the southern part of Rocky Mountain range to have spring skiing. We The elevation is quite high- village at 8,000 feet and the top of ski mountain about 12,000
Our daughter is defending her thesis ( PhD Princeton ) for variability in the southern ocean - in mid May. She is running a few bugs in the Australian model right now. It pertains to your part of the world. If you’d like, I’ll share with you privately- her thesis. She will be teaching at Princeton next semester while she works on a post Doc.
She worked on the IPCC ( for Natalie Mahowald) - international panel for climate change while at Cornell. You can look up IPCC for a read. The IPCC is where various governments around the world go to obtain raw data to set their country’s environmental policies.
Our daughter also studied policy at Woodrow wilson school of policy at Princeton and PhD in oceanic and atmospheric sciences at Princeton. Her advisor at Princeton is Dr. Jorge Sarmiento, who is considered the Grandfather of climate science, and he wrote the textbooks other universities use. She is his only and last student as he is retiring this semester. It’s a massive honor to be his student. You can look up the Polar project - he has that going at the moment.
Her Education is a blending of ocean chemistry, physics, biology, geology, and engineering. ( Hard sciences, as opposed to theoretical. )
Part if my family will be in your part of the world in a couple of months. Our almost 18 year old son and my husband be in Queensland end of May. Our dear friends are there. They will be in Thangool. ( spelling?) A very tiny tiny town! Have you heard of it? Brisbane area. Apparently my son is going crabbing and swimming with sharks...
Then my husband and son ( and my husbands best friend from Australia) are meeting up with rest of our family June 6th in Peru for a holiday. I’m very sad I can’t go with...They will be gone about a month in total.
Love to have a read-although most will probably be a bit beyond my fluctuating brain capabilities! I had to look up Thangool-not quite Brisbane area- its over 500km away I'm going to Gold coast for a few days next week as it's our anniversary so booked a quick deal. Haven't been to Peru but i have it on my wish list! Heading to China in May and that's about as far as I plan ahead right now!
Wow kel i am impressed with your daughter - you must be one proud MOM -- i believe i can hear it in your typed words !!! iw ill check into what you gave for info - of to Doc's to have mouth checked
Kel - i didn't know you are primary i just looked at your profile again - i need to get a referral to a Rhuemy. the one i found is in Dartmouth Hitchcock- very high respected Hosp here and she has Lupus background so i went with her because of the relation to APS . there is a APS doc there but he is a legend in his own mind !! i had him before and blasted him on my way out.i had a gal that use to go to my appointments down there in Manchester DHMC and she saw exactly what i meant and when i called there they said i had been a patient there befoe 2011 - that was correct but i don't want that Doc. or i will go to another hosp. my rhuemy left the practice -- they all did ?? HMMM !!
Besides all the awful pain you are in, you are having parent guilt. This is something a lot of parents, especially ill parents, struggle with. Watching movies with her is awesome!!! You may not think this is much, but I bet it means a lot to her. Me and my sons do the same. It’s our thing. I bought a bucket list movie poster with 100 movies on it. You scratch off we you watch one. Me and my 19 year old love it. He is fixing to move as well...but not that far. Enjoy the movie watching and hope you feel better soon. Wish I had more suggestions on the pain side.
i would suggest Cleveland Clinic's Functional Medicine. But Dr Hyman is offering a free viewing session for an upcoming podcast, " Broken Brain 2." Such podcasts empower patients to see and correct environmental and nutritional issues, such as hidden mold attacks and food sensitivities. It starts in April, its free, and and may ( or may not) present a useful approach. If you can't find a link, message me with your email and .i will forward a link.
I’m sorry you’re having such a bad time. It can start to feel very hopeless, but you must battle that feeling. Try to do the things that lift your spirits-watch the birds outside, read, are there any crafts you like to do, stay in contact with people who love you, etc.
As for testing, Quest Labs in the US offers testing that an individual can order. I don’t know any details of what tests they offer or how costly it is. Sad that your doc won’t do the tests, but he probably has no knowledge in this area.
Is it possible for you to see an endocrinologist? They would see that all the fine points got covered with regard to the thyroid!
Our son lives 800 miles away, it’s so hard to have them far away! I know you’re treasuring the moments with your daughter now. The everyday living together is so precious.
Maybe she can google it- print it off and take it to doctor to look over, and he can replicate his own version, and add a few of his own if he’d like so insurance would cover?
Great to know about this, Tofino. I didn’t know about it.
I don't have as much wisdom and help as the above lovely people. But I recognize the guilty feeling so much. I saw this sketch and it has helped me, it's so very true. I hope the link works.
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I'm going to Gold coast for a few days next week as it's our anniversary so booked a quick deal. Haven't been to Peru but i have it on my wish list! Heading to China in May and that's about as far as I plan ahead right now!
Looking for some help, feeling very lonely 
Only in my head?! Really?! OMG so frustrated. Has anyone been to St. Thomas and what are the costs?
Liver Function really high
