Confused?

[Nanny23]

Hi I am positive for anticardiolipin antibodies. Been on aspirin therapy. Never had a clot that I know of. Was in a car accident in May 2017. Air bag hit my left ear and lost some hearing in that ear. Went to an ENT specialist and he ordered an MRI on my brain to see if any physical damage to me ear. MRI showed I had a stroke in right cerebellum which controls balance. Wait it was old asked if I had symptoms. I had no idea this happened. I also am hypo thyroid it’s not hashimotos. Within last year I’ve had severe swelling in my legs. It’s happened 3 times. Once the heat was over 100 degrees farenheight. Once heat went away swelling went down. Happened again last winter when I was on my feet for 16 hours straight. Dr. had to prescribe water pill to go down. I am on 40 mg. furosemide. Well now I have it again and again standing baking getting things done for the holidays. It’s stubborn not going down. I’m on 75 mcg Synthroid and 20mcg. Liothorine. Seems I’m a bad converter from T4-T-3. I was taking all at once but now taking T-4 at bedtime and liothorine T-3 I morning at 6am. My question is this leg swelling from APS or as dr. Said insufficient veins. I don’t want to have a second stroke. I’m a 70 year old female living in New York USA. HEALTH UNLOCKED has been a life saver for me and my sister Debbie. Want to wish you all good health and happiness for the new year. ❤️ Lynn

[Lure2]

Hi Lynn,

I have only have Hyperparathyroidosis and was operated for that. No problem with Thyroidea as i know.

I have had protection stockings when the legs are swelled for many years now. Before I had problems with labil INR and exstremely high bloodpressure. My hypertension and legs are ok now after heart/bloodpressure drugs. I wonder if you have got your hypertension in range? Insufficient veins are probably caused by APS. Hope you have got a Specialist of APS to talk to.

When I had my TIA-symptoms I had neurolgical symptoms in ears, eyes and balance. That was before Warfarin.

What therapeutic range has your Specialist put you on?

Stable INR at a correct range, protection stockings, bloodpressure-drugs etc are important for us. Can not tell you anything about your Thyroidea-issues.

[Nanny23 in reply to Lure2]

Hi thanks so much for responding. As far as a good APS DR. IM STILL LOOKING. Here in USA most doctors don’t know much about it. I do have a hemotoligist that treats me for it. He joined a hospital group. Since then I don’t really like him. It seems here in New York you have 2 choice Go into Manhattan or go to Astonybrook Long Island. I live Long island and it’s a pain to go into the big city. I had to do that when I had breast cancer.

[Nanny23 in reply to Nanny23]

I do have high blood pressure for 2 years now but it’s under control. My internist doesn’t take APS into consideration. He thinks just getting older. Have a great New Year. ❤️

[Lure2 in reply to Nanny23]

Of course it can be because of high age but is 70 high age - perhaps. I am now 75 but had exstremely high bloodpressure 215/115 or something like that when i was 60-65. Got Pulmonary Hypertension which is APS related. Now stable on an INR around 4.0. Perhaps you have never had chestpains?

Anyway keep the bloodpressure under control. Has he not told you to have stockings on for swelling legs?

Not all of us get these heart/lung issues with high bloodpressure and perhaps you are one of them. I have bought a bloodpressure-machine severeal years ago to cheque my own bloodpressure at home. Try to buy one you too.

I am going to see my baby-grandchild and his parents also for New Year. Have a great New Year you too!!!

[Debbweb01 in reply to Nanny23]

Lynn you must be on better anticoagulant! You can’t take any chances! Wen u go c Donnelly u must tell him this! U had a stroke! You don’t need another one!

[Lure2 in reply to Debbweb01]

Well said! Good sister indeed!

Happy New 2020 to you Deb!

Godspeed!

[Lure2]

Also I wonder if you are anticoagulated for your APS as you mention neurological symptoms and a stroke? Do you still have balance-issues today?

I hope you will be able to find a Specialist in New York for APS! We have many members here from the US.

[Nanny23 in reply to Lure2]

My hemotoligist told me to take aspirin for APS because at the time I did not know I had a stroke. They found out because of my car accident. I am clumsy and still fall some time. The area where I had damage was the right cerebellum. That area affects balance. But I never had any symptoms of having a stroke. I found out because of my ear being hit with the air bag and having an MRI. Enjoy your grand baby. I have 5 grand babies and 1 great grand baby. They are my world. Happy 2020 Kirsten. ❤️

[Kerlampert]

Sounds like metabolic syndrome..which BP meds are you taking and are they working?

Limit the standing to no more than 30 minute stints. And increase the walking to 30 minute stints. Go swimming, too!

Compression stockings are very important.

Look at the keto diet, or other low carb alternatives.

Happy New Year!

[Nanny23 in reply to Kerlampert]

Hi thanks for responding. I take telemesarten. Yes it does control blood pressure. Only found I had blood pressure problems 2 years ago. I am on a low carbohydrate diet. My hypothyroidism makes it hard to lose weight but I pretty much stay the same. Have to go on exercise bike again been so busy cleaning and baking. The baking and standing a long time is what started swelling again. I do wear compression stockings. Have a happy new year.

[GinaD]

Your trajectory to diagnosis resembles mine. I was having "panic attacks" which a later MRI showed to be mini strokes. I also had a history of DVTs and leg swelling. I was diagnosed, put on warfarin and have done pretty well ever since. But for the first few years I did wear the ugly, uncomfortable supp hose whenever I was going to be sitting or standing for long periods. I found my legs were more likely to swell in hot weather when wearing those horrible stockings was even more uncomfortable. But. oh well. Better than another DVT related trip to the hospital.

[MaryF Administrator]

Hi, you have had some great feedback and advice, I do suggest that in addition to this forum that you also join Thyroid UK, on this platform they can certainly help you with your Thyroid issue. Do you also have a designated Hughes Syndrome/APS specialist it is important that your are seen regularly to sort out any issues with anticoagulation.

I enclose this paper for you: wilsonssyndrome.com/thyroid... MaryF

[Nanny23 in reply to MaryF]

Mary I cannot thank you enough. I think that paper describes me perfectly. I am going to print a copy and show my dr. You do an amazing service to people here on Health Unlocked. I still would not know the difference between t-3 and t-4 if it weren’t for the people on Thyroid UK. Thankyou for educating me. HAPPY NEW YEAR.

[Nanny23]

Thanks so much Mary. I am on the thyroid UK and haven gotten excellent advice there. I want to post this there also but I don’t know how to put 1 post on more than one forum. I do go hemotologist for APS but he joined a group and he’s not as good anymore. my primary care dr. Really doesn’t know much about AOS but I got tested because my sister Debbie said it can be hereditary. Sure enough it came positive for anti cardiolipon . Never had a clot I knew of but that stroke shocked me. Thanks to people here I even know I have APS. Any knowledge of my thyroid came from the people at thyroid UK on this forum. I even showed my dr. Some of the literature and tried me on T3. I would be ignorant of it all without your help.