I need your wisdom! Losing my eyesight... - Thyroid UK

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I need your wisdom! Losing my eyesight...

janeroar profile image
7 Replies

Hello,

This is the first time I've posted a question to the community. I would be very grateful for this community's huge wisdom especially as I am managing some tricky health conditions. I was diagnosed hypo-thyroid with Hashimotos when I was14 but only given thyroxine about 7 years ago. I'm now 52 years old. In addition I have something called Behcets, an autoimmune condition and most concerning I have been battling toxoplasmosis, which flared up badly 3 years ago. This has been causing inflammation in my eyes and recently I've lost quite a lot of sight in one eye. So I need to maximise my chances of hanging on to the rest of my eyesight. I function quite well and have a demanding job but I get tired and my sleep is pretty bad - waking at 4am most days is leaving me v fatigued during the day and I think doesn't help with the inflammation.

I follow a largely gluten free diet and eat very healthily. But I'm often constipated in spite of vast amounts of fruit and veg! I exercise a lot.

I take the following thyroxin and supplements:

Novothyral (100mcg t4 plus 25mcg T3) I was given the T3 because although my T4 was right at top end of the range my T3 levels were on the floor. Been taking this just for 3 months, before then just 125mcg Levothyroxine. I think this suits me better.

Vitamin B12 oral spray 1200ug (been taking for last month)

Vitamin D oral spray 3000 (the Better You one) (been taking for last month)

Magnesium - tried different ones. Not sure any have been right for me.

I was until recently taking selenium but now run out so can't remember the dosage.

I take a large dose fish oil supplement, curcumin and turmeric. I am now also on low dose of natural female hormones (oestrogen,progestrone and testosterone)

My questions are:

How can I improve my sleep?

Why is my serum iron level good but serum TIBC and ferritin low?

Why is my B12 level ok but serum folate q low in comparison?

How do i get my folate and ferritin levels up? Can you recommend any particular brands?

Do I need to consider switching to NDT or T3 only?

These are my latest test results. For some reason my T3 levels weren't taken though i asked for them and they were on the floor last time tested:

Thyroid Function Test

TSH Level 0.01 (0.3-4.2)

T4 17 (12-22)

IRON LEVELS

Serum iron level 32.6 (11-36)

Serum TIBC 53.7 (53-85)

Serum Ferritin 34 (40-250)

Transferrin saturation index 60.7% (20-40%)

B12/folate level

Serum vitamin B12 719 (160-925)

Serum folate 11.7 (2.9-50)

D3 Level 84 (75-250)

Apologies for the long posting and huge thanks in advance for any advice! :))

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janeroar
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humanbean profile image
humanbean

Serum iron level 32.6 (11-36)

Serum TIBC 53.7 (53-85)

Serum Ferritin 34 (40-250)

Transferrin saturation index 60.7% (20-40%)

I wouldn't recommend that you supplement iron with your current results. Your serum iron is high in range and you are at risk of pushing it over the range. This possibility is also shown by the fact that your transferrin saturation is already way over the range, suggesting that your blood is highly saturated with iron already.

This combination of results is usually related to a methylation/MTHFR problem.

Look at the section on iron in the first link and read the other links :

stopthethyroidmadness.com/l...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/m...

I'm afraid methylation issues are something I don't really understand. One link on the subject that I do like is this one :

drmyhill.co.uk/wiki/CFS_-_T...

Dr Myhill gives a suggested protocol for getting the methylation cycle running again. You don't have to read the rest or understand the rest of the page, but you should give it a try.

Further links on methylation and problems with the MTHFR gene :

draxe.com/mthfr-mutation/

mthfr.net/

humanbean profile image
humanbean in reply to humanbean

I should have mentioned...

The whole issue with methylation is that we take in certain nutrients but they don't work in the body exactly as they are.

So you could supplement with folic acid, but your body can't convert it into a form which is usable for your body (or can't convert it very quickly).

Another issue is that you might supplement cyanocobalamin or eat food containing hydroxocobalamin (both forms of vitamin B12), but unless your body can convert these into methylcobalamin and adenosylcobalamin (active forms of B12) then you will effectively be extremely short of B12 despite what blood tests say.

The way round the issue is to take the already-converted forms of vitamins. So supplementing with methylcobalamin will help, as will supplementing with Methyltetrahydrofolate (the active form of folate instead of folic acid).

The problem is that if your body has not been able to do this conversion for ages then supplementing large doses of active B12 and active folate can suddenly make lots of detoxification happen all at once. And it can make people feel dreadful. It doesn't mean that you shouldn't do this. It means that going fairly slowly is best.

Please note that a common issue with supplementing active forms of B12 is that the body needs potassium to help deal with the effects. Developing low potassium is not pleasant, can be dangerous, but you may find you need a (small) supplement of potassium. Potassium is something you shouldn't mess with - it affects the way the heart beats.

So, really, all I'm saying is give your body a chance - supplement active forms of B vitamins (I've only mentioned folate and B12, there are others you will need to supplement in their active form), but do it s-l-o-w-l-y. And watch out for low potassium.

janeroar profile image
janeroar in reply to humanbean

Thank you so much Humanbean. Got to get my head around this!. It’s completely new to me what you describe. What is odd is that my iron levels were always v v low. I was anaemic until q recently when my hormones changed. Could I have had this problem all along or could it be something new?

humanbean profile image
humanbean in reply to janeroar

The problem is that you may have the MTHFR genes, but when you were born those genes preventing you converting B vitamins to their active forms may have not been active. But if other health issues start happening then the genes could get triggered, and your lack of conversion could then become a problem.

Genes can be switched on or switched off throughout life (I think - look into epigenetics), and you may need to supplement for a while to get the methylation cycle started again, but whether or not you have to keep supplementing I wouldn't know.

Please bear in mind that my knowledge of this subject is poor and very, very hazy. I could have misinterpreted your results and sent you off on a wild goose chase. And I have NO medical training.

SlowDragon profile image
SlowDragonAdministrator

For better sleep try improving your vitamin D further. With Hashimotos we tend to need high dose. Could try 6000iu for a month or so

When improving vitamin D the body also needs good vitamin B complex (also recommended if taking B12)

Personally I like Igennus super B complex

See this link about Vitamin D and B linked to insomnia

drgominak.com/sleep/vitamin...

But remember to stop taking B complex or any supplements with biotin in 3-5 days before future blood tests. Biotin can falsely affect test results

janeroar profile image
janeroar

Thank you humanbean and SlowDragon. Good advice re stopping vitamin b before testing. I didn’t do that so those results might be skewed.

janeroar profile image
janeroar

SlowDragon

Thanks again for the info. I’ve just looked up Ingennus vitamin b. It looks like a v good British based vitamin company. Their doses are high eg b12 is 36,000% of RI (which I think means daily average intake?). I remember years ago when I took high dose vitamin b I felt v odd, made me feel v hot and light headed. Could be that wasn’t a good formulation or that I shouldn’t have high doses?

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