any tips/advice: Hello, I’m new here. I came upon... - Thyroid UK

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any tips/advice

Margiepargie profile image
21 Replies

Hello, I’m new here. I came upon this sit while trying to search for ways to lower my thyroid antibodies as my latest bloods have come back abnormal. But was told that my iron, ferritin and vitamin d was ok.

I was wondering if there was any advice on how to feel a bit healthier.?

I was as diagnosed in around 2018 with hashimotos and put on levothyroxine. No other advice was given only that i would have to basically put up with my symptoms.

That is what i have been doing. Just putting up with feeling tired, brain fog, pretty low really.

I have recently started taking some supplements like lions mane, vitamin d, a B complex, ashwagandha and N-acetyl cysteine. I’m gluten and dairy free and a vegetarian. I think Im relatively fit but probably could do with losing a round 6/7 lbs. If anyone has any suggestions, tips, advice, id be very grateful

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Margiepargie
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21 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group.

Often doctors leave us under replaced and with low vitamin levels despite them all being within the normal range. We need to supplement vitamin levels to OPTIMAL for ur thyroid hormone to work well.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

How much vit D are you taking?

Which B complex are you taking?

Margiepargie profile image
Margiepargie in reply to Jaydee1507

Hello jaydee1507

Thank you so much for the reply.

Yes I had a positive antibodies test and a scan too when I was first diagnosed with hashimotos in around 2018. And I’ve probably been gluten and dairy free for around 2 years now.

I usually take 100mcg of accord levothyroxine 10pm every night and at least 4 hours away from food and drink. And I can only take the accord brand as others in the past made me feel terrible.

I take Better You oral Vitamin D + K2 Spray, Thorne basic B complex.

Yes I’ve got my latest bloods here they were done a week ago. Do they look okay to you?

Serum TSH level 0.54 mu/L [0.27 - 4.2]

Serum free T4 level 12.7 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 3.1 pmol/L [3.1 - 6.8]

Thyroid peroxidase ab's > 600 ku/L [< 34.0]

Thyroglobulin autoantibodies 4,000 iu/mL [< 115]

thyroglobulin level 0.1 ug/L [3.5 - 77]

Serum total 25-hydroxy vitamin D level (Xabo0) 57.5 nmol/L

Serum folate level (42U5.) 2.9 ng/ml [3 - 20]

Serum ferritin level (XE24r) 43 ng/ml [13 - 150]

Serum vitamin B12 level (XE2pf) 219 ng/L [197 - 771

Again thank you for the reply x

Jaydee1507 profile image
Jaydee1507Administrator in reply to Margiepargie

Your thyroid results look like you're under replaced. How long before your blood etst did you take your Levo? Your FT4 is very low in rnage as is your FT3 and no wonder you feel awful.

All your vitamin levels are horribly low as well. I know your GP will likely say that they are OK but they really aren't at all!

Were the vitamin results done a week ago and how long had you been supplementing before the vitamin test?

Margiepargie profile image
Margiepargie in reply to Jaydee1507

Hi Jaydee1507,

I stopped my Levo for 24 hours before and stopped taking any supplements for a week before. All bloods were taken at the same time. I will say I’ve only started taking supplements for around a month / 6 weeks ir so.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Margiepargie

You're ready for the next dose increase but likely your GP will be reluctant due to your low TSH. You can try asking for a trial increase which sometimes works better.

Retest vitamins in 3-4 months time after you started supplementing.

Margiepargie profile image
Margiepargie in reply to Jaydee1507

I’ll be honest with you I think my GP will just let me try. He’s pretty…. How can I say it? Lazy. If I suggest something he just says ok try it. He never puts much effort into looking for anything. It was only because I said I’d been reading about thyroid issues and I thought that could be why after so many years I still felt awful. Low and behold he tested me and I was right,

Do you think I should go up by 25mcg?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Margiepargie

yes 25mcgs. Your FT4 is at the bottom of the range.

Margiepargie profile image
Margiepargie in reply to Jaydee1507

So FT4 should be higher then? What should I look to getting it to?

SlowDragon profile image
SlowDragonAdministrator in reply to Margiepargie

So was this test done early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

How long have you been taking B complex and did you stop taking 5-7 days before test ?

SlowDragon profile image
SlowDragonAdministrator in reply to Margiepargie

Serum folate level (42U5.) 2.9 ng/ml [3 - 20]

Serum vitamin B12 level (XE2pf) 219 ng/L [197 - 771

Are these results from before starting on B complex?

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

As you are Vegetarian likely to need ongoing separate B12 at least few times a week, if not daily

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

SlowDragon profile image
SlowDragonAdministrator in reply to Margiepargie

vitamin D level (Xabo0) 57.5 nmol/L

I take Better You oral Vitamin D + K2 Spray

How long have you been taking this

One spray = 1000iu

How many sprays per day are you taking

Aiming for vitamin D at least over 80nmol minimum

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Margiepargie profile image
Margiepargie in reply to SlowDragon

Hi SlowDragon,

Thank you replying. Yes I left 24 hour gap with Levo and the text was fine at 8am only water too. I stopped all supplements for a week before hand.

I’ve been taking supplements for around 4/6 weeks so I’m guessing that’s not enough time to do anything any good? .

First thing when I wake up with a cup of tea I take an Ashwagandha and 1 N-acetyl cysteine..

I take 3 sprays of the D vitamin in the morning. And I take 1 Thorne b complex with breakfast

Around mid afternoon I take 2 lions mane then around 5 pm I take a magnesium.,

And yes I’m vegetarian. I’m also gluten and dairy free too.

So you think if I get my vitamins levels up I should start to feel better? My Gp said all my levels are ok. But he also took years to test me for Hashimotos, . lol.

greygoose profile image
greygoose

Hi Margiepargie, welcome to the forum. :)

I came upon this sit while trying to search for ways to lower my thyroid antibodies

Why do you want to lower your thyroid antibodies? You do know that it's not your TPO/Tg antibodies that are attacking your thyroid, don't you? So, even if you got rid of them completely - which I doubt you ever could - you would still have Hashi's.

These antibodies have a job to do, they clean up the blood after an immune system attack on the thyroid. So why try to lower them? Just let them get on with it. :)

Margiepargie profile image
Margiepargie in reply to greygoose

Hi greygoose, when I spoke to the nurse over the phone she commented on how high my test was and I needed to work on lowering.,

greygoose profile image
greygoose in reply to Margiepargie

Well, I'm afraid she doesn't know what she's talking about. It won't make any difference to you how high they are.

Very, very few medical personelle understand antibodies. They believe that it's the TPO/Tg antibodies attacking the thyroid, but it isn't. The antibodies just come along after an attack and clean up the blood. They are the result of the disease, not the cause.

So, did she make any suggestions about how to lower them? Just curious. :)

Margiepargie profile image
Margiepargie in reply to greygoose

No nothing helpful from her at all. She suggested asking to see an endocrinologist. But I’d already had a locum refer me only for the endo to get back saying and I quote

“She is a bit over-replaced at present - I note her TSH is persistently low.

Can I suggest reducing her LT4 - if currently on 100 then maybe alternate day reduction to 75 microg (maybe on odd days of the month)?

If still very symptomatic when the TSH has been normalised, we could potentially see, but may not have much we can offer and would not want to raise false hopes for her.”

I won’t add his name but needles to say he specialises in diabetes and not thyroid.

It’s laughable. That’s what brought me here. I decided to try to look more into my own health rather than just naively relying on my doctor. H just seems a bit lazy . He does let me suggest treatments so I can’t grumble, but doesn’t seem to be interested.

greygoose profile image
greygoose in reply to Margiepargie

Sounds like a typical GP! They are lazy when it comes to thyroid because it just doesn't interest them. They don't understand it enough to be interested in it. And, they were taught in med school that it's no big deal, so why bother!

But they should not be dosing by the TSH! I know that's what they all do, but it's wrong and shows a basic lack of understanding how it all works. You TSH can be low, but you still be hypo.

But, none of this has anything to do with antibodies. They are just a marker that proves you have autoimmune thyroiditis - aka Hashi's. Fiddling with the dose won't have any effect on them, and even if you managed to get rid of them entirely, you'd still have Hashi's, your thyroid would still be destroyed, and you would still be ill.

Margiepargie profile image
Margiepargie in reply to greygoose

So I don’t need to do anything about the antibodies then? Sorry for being a bit thick but what is Thyroid peroxidase?

Jaydee1507 and SlowDragon have noted that all my vitamins are pretty low. If I get them up should I in theory feel a bit better?

greygoose profile image
greygoose in reply to Margiepargie

No, no need to do anything about the antibodies. Just let them get on with doing their job.

Thyroid Peroxidase is a protein found inside the thyroid that has a role to play in the production of thyroid hormone (not quite sure what!). But, during an attack on the thyroid, as the cells die, they leak some Thyroid Peroxidase into the blood, where it shouldn't be. So, the Thyroid Peroxidase Antibodies come along to get rid of it. That is their job. And I'm not convinced it's a good idea to try to get rid of the TPOab and leave the Thyroid Peroxidase in the blood. Which is why I say: leave the antibodies alone.

Having sub-optimal nutrients will cause a lot of symptoms! So, yes, getting those levels up will probably help enormously. :)

Margiepargie profile image
Margiepargie in reply to greygoose

Wow thank you. So jaydee 1507 suggested that I ask my GP to get and 25mcg increase. Will this then also help ? and if so how long does it take for a dose increase to take some sort of effect? Sorry for all the questions, this is the first time that anyone has actually given me something tangible to understand what’s going on in my body. X

greygoose profile image
greygoose

Serum TSH level 0.54 mu/L [0.27 - 4.2]

Serum free T4 level 12.7 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 3.1 pmol/L [3.1 - 6.8]

Your levels are very low, you must be feeling absolutely dreadful!

Your FT4 is only 7.00% through the range, and your FT3 0%!!! They should both be more like 70/75%.

Does your doctor dose by the TSH? Because the TSH is not a good indicator of thyroid status, especially when it gets below 1. So, if he's only looking at your TSH, he's going to think you are adequately medicated. You need to point out to him how low your Frees are, and ask for an increase of at least 25 mcg. And you're probably going to need a couple more increases after that to get your levels to anything like optimal. Try throwing a bucket of cold water over him to wake him up! 🤣🤣🤣

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