My GP in Kerrville, has asked me to ask you for the specific levels of The various vitamins you ask us to keep an eye on.
This conversation came about because :
1. My ferritin was at 16 and no one caught it but Lynn. My hematologist wasn’t even running the specific ferritin level. My GP did .
2. I showed my heme and he agreed was too low- and said GP could start infusing me- GP is local and heme is in SA and if GP can do it locally it’s better for me if I don’t have to drive almost 2 hours in one way.
3. Thyroid is low. T-3/ T-4 is flagging low. Progressing into lazy thyroid problem. THS total free ( over all regulator like the thermostat on air conditioning/ heating system is ok and that’s the most important thing to look at was ok - the others are just “ snap shots in time” I was told by endo so not important numbers because they change so much. He compared to rooms in a house... vents off the main system but look at main regulator of thermostat?)
Vitamins D, B’s, etc, all the things you mention on here as they pertain to APS / Hughes patients in particular. Specifically, as we have specific needs. For example, Vitamin D helps with not clotting. ( we are no longer as humans in the sun as much as we used to be when we were hunting and gathering societies.)
I was his first APS patient ever. Now he has a small handful! Funny how that works... He has had his “ hands on and clinical application” common sense education through you ladies - through me.
He knows you are patients also if Dr Hughes and that you are keepers of the publications.
He values your experience and expertise. “ what is this patient teaching us?” He has scoured Dr Hughes book, Highways and Byways. His nurse is a PhD researcher. She devoured it.
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I told my doctor, “ we as APS patients need to make sure our levels of Vitamin D, B-12 and iron are fine. “
He asked me,” Are these within the same parameters as normal patients, or do APS patiens need them at the highest range of normal? And what about ferritin? And what about the British standards versus the American standards in General for these thyroid tests? And how does this work with APS patients? What are APS patients personally experiencing? Since Lazy thyroid is so connected to this?
It’s not quite the same, is it? Can you ask the Admin who are Dr. Hughes patients? What is he recommending? And Lynn - who is representing GHIC At the UK thyroid conference? A patient herself of low thyroid with Hughes Syndrome and Mary also?
I’m not sure if you, Holly also have the Thyroid low?
America has a slightly different take on this, and combined with APS...
my Rheumatologist does understand the connection- but isn’t really doing much. Just plaquinil for keeping things from progressing.
I also think it is interesting that APSnotFab called for vitamin D to be 75. I have been "too symptomatic" and my D is coming out at 33 in spite of supplements. I have also been trying to increase the supplement to see if it helps. Thank you everybody for all of your input here!
Thank you! - For you time as well with what I am sure is a very busy day for you today prepping for your surgery. Hoping for some time off for you to do exactly what YOU want and need to do! Movies or books by audio? Whatever it is- please enjoy. Let your hubby and friends pamper you for a bit. Then please come back here to help your team mates with us!
I was going to give a similar reply to Lynn, so agree with what has been said here. Apart from going gluten free, strictly so now for a few years, making sure I am on all the right supplements, and also paying privately to extensively test my thyroid beyond the usual tests.
Since raising my D, B12 and Iron, plus my thyroid function with natural desiccated thyroid I feel quite a bit better. Some patients find it difficult to convert the synthetic T4 which is the usual Synthroid or Levothyroixine to the T3 which is needed by the body. I take NDT for this reason and also in line with my extreme allergy with most drugs.
interesting, iron was very bad for me; led to me having periods every 2 weeks that lasted for 7 days or more. more than half of my life bleeding. my doctor explained that I should not take iron with APS because I was causing a backlog of blood, and my body started trying to self-correct by menstruating to get rid of it. I have yet to see my APS specialist though and am still new to all of this, so I am no authority. just sharing my experience.
Thank you, Mary. My gastro has me “ relatively gluten free “ ... I was strictly but found I can add limited toast in the morning. ( I may take that out. )
I avoid sugars per gastro. ( I cheat a little. Very very little. I sure am tattling on myself here...)
But I disclose to gastro and he said “ you will find your own limits. “
Fructose and artificial sugared are a NO NO No! That’s for sure! I’m a fructose mal absorber. By hydrogen breath test.
Look up Thierry Vrain on YouTube. A retired biochemist. He suggests that many think they have gluten intolerance but it is actually a glyphosate intolerance. GMO crops are treated extensively with it. Grains are very likely to have been treated with it. If he is right we are all feeling the effects of pesticide exposures. That's why there is so much noise about Monsanto these days as their model relies completely on GMO seed together with glyphosphate use. And note, if there is anything to this even avoiding buying GMO directly does not remove the issue as animals are regularly fed with GMO produced feedstuff. So unless you are an organic vegan you will likely be ingesting GMO foods.
Hi, my thyroid is ok but I am low on ferritin, B12 and Vit D. Which I am prescribed supplements to maintain levels.
From what I understand is that we are more prone to deficiencies and other autoimmune diseases than people without APS, I struggle even with supplements to maintain mid levels.
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