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A Request From My GP For London Admin, Please, Regarding Specific Levels : Vitamins / Thyroid

Ladies, here’s looking at you.

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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Hi Kelly

This is what I have learnt are the best levels to have:

Ferritin - 90 - 100

B12 - 500 or over

Vit D - 75 and above

Thyroid - T3 and T 4 should be in the top quarter of the reference range, especially the T3.

It's also probably helpful to take some magnesium and vit c too and also a good all round B supplement (I will let you know the one I take when I get home).

With Thyroid meds you may need something like Natural Desicatted Thyroid extract like Nature Thyroid as it has a combination of both T3 and T4 but getting that prescribed could be an issue unless your GP is very helpful.

If you need more help just ask. I'm having eye surgery again on my other eye tomorrow so may be off line for a bit.

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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!

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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.

Mary F

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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.

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That IS interesting! You were your own best hematologist... self regulating like that. Not very pleasant though. That’s amazing.

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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.

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Kelly have you tried truvia?

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My gastro says no to it. Only real sugar and in very small quantities. ( glucose is best and table sugar is already 1/2 glucose.)

I actually do well with anhydrous glucose. I have it ordered in.

I have a registered dietitian who works with me.

Certain sugars trigger seizures for me.

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Have you tried gluten free bread? My favorite brands are Kinnekinnictic ( sp.??) and Three Bakers.

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I have tried some- Ezekiel. But it’s meh. I’ll try yours!

Blue diamond ( the nut company...)has a gluten free cracker line that’s excellent! Check that exact one if you’d like.

Also I’m like you- cashews make me really sick really quickly.

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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.

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Ezekiel make some excellent GF English Muffins that you can find in the GF freezers in food stores in the USA. I love them but sadly they don't ship that product to the UK 😞

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Wishing you well Lynn, Cindy

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APsnotFab What is the b supplement?

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Hi, I can only give you the ranges that show on my last blood tests? Not sure if thats what you are asking?

Lynn & Mary can give you more accurate figures.

Vitamin B12 pmol/L 140.00-724.00

Folate (Serum) ug/L 2.91 - 50.00

Ferritin ug/L 13-150.00

Haven't got Vit D

Obviously we need to keep mid range.

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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.

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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!

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Hey, remember that for Vitamin D the USA and U.K. work from different unit measurements xxx

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ah, and 75 UK is 30 US. a conversion chart is in this article...

huffingtonpost.com/alan-chr...

in case anyone is interested. are we allowed to post links like this here?

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I’ve learned to down load quick- just in case! Just did it! I also had another friend in England send me similar conversion chart yesterday.

“ cheeky teenager behavior before we get caught sneaking !”

This one I think is fine because we are not promoting any particular brand any marketer is selling, right?

Thank you!

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Links like this are excellent! Its informative and comes from a generally good source. What we don't allow is links to obscure websites that have unsubstantiated claims or are advertising something. If we remove a link its because we have checked it out and feel that its not suitable. we will let the poster know its been removed.

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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.

We are all learning as we go on....

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We need Ferritin at the level I suggested above if we have a lazy or autoimmune Thyroid, as ferritin is needed at the right level if the Thyroid is to work efficiently or medication converts properly. Thyroid is one of the trio of diseases that seem to run with APS so its common to find problems relating to it.

In the U.K. Under 50 for Vit D would be considered as becoming deficient and in the 30's is deficient. I was told to stay at 75-80. With B12 the range here in the U.K is actually set quite low so you could be told you are ok however in other countries under 400 would be considered low or in a grey area. Again anyone with gut issues could have absorption issues which would lead to low levels and of course if there is a hidden celiac then there is an even bigger risk of pernicious anemia so I've always been advised to not go below 500, but others with no gut issues may manage with slightly lower levels. In general APS patients do seem to have deficiencies but there are proven links to risks with APS and low Vit D and as stated above B12 with the gut. Medications will deplete magnesium which is why it's good to take that.

Mary and I went to the Thyroid conference last year for GHIC.

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