Moving forward: This is a follow to my previous... - Thyroid UK

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Moving forward

ILR2019 profile image
19 Replies

This is a follow to my previous post from a few days ago regarding advice on self medicating/treating. Having now received my Medichecks results for my Thyroid Ultravit test (bloods drawn on Wed, 29th July) and spoken to my GP in a brief (and pointless) medication review by phone this morning I feel I need to start the journey so many of you are already on with regards to being self treating I stupidly forgot to remove the Medichecks GP notes which recommended a dose reduction due to TSH. My GP has agreed to at leave my dose alone, but unless my TSH improves will implement another reduction in 8 weeks!?!

I currently take 10ug vitamin D (GP recommened dose), 10ug B12 and 14mg iron daily. Clearly these are going to need to be increased (possibly doubled?). I already implement a gluten free diet, so I guess I will have to be more strict/regimental. Will optimising the vitamins and diet have a dramatic affect in reducing the TPO antibodies and inflammation? What should I now do with regards to my thyroid panel? Should I seek T3 or additional Levo (I have been given details to self source).

Current results (Medichecks) on 100mcg/125mcg alternating days.

• CRP HS X 5.14 mg/L (Range: < 5)

• Ferritin 23.6 ug/L (Range: 13 - 150)

• Vitamin B12 - Active 43.100 pmol/L (Range: > 37.5)

• Vitamin D 63.9 nmol/L (Range: 50 - 175)

• TSH X 0.17 mIU/L (Range: 0.27 - 4.2)

• Free T3 4.16 pmol/L (Range: 3.1 - 6.8)

• Free Thyroxine 15.500 pmol/L (Range: 12 - 22)

• Thyroglobulin Antibodies 92.100 kIU/L (Range: < 115)

• Thyroid Peroxidase Antibodies X 141 kIU/L (Range: < 34)

Previous results (Medichecks) on 125mcg Levo daily.

January 2020 - TSH X 0.115 mIU/L

January 2020 - Free T3 4.9 pmol/L

January 2020 - Free Thyroxine 18.300 pmol/L

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ILR2019
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SlowDragon profile image
SlowDragonAdministrator

Improving vitamin levels SHOULD improve conversion of Ft4 to Ft3 (and may increase TSH)

No folate result?

Vitamin D

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

Aiming to improve vitamin D to at least around 80nmol and around 100nmol maybe better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

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

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Importance of vitamin D for fighting Covid

moxafrica.org/post/the-vita...

Calculator for working out how much vitamin D you might need

grassrootshealth.net/projec...

B12 very low - please add folate result....they work together

Ferritin is currently terrible

Aiming to improve to at least around 70

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

ILR2019 profile image
ILR2019 in reply toSlowDragon

I see my last folate test was basically a year ago. The level was 8.2 ug/L [3.1 - 20.0] so also low. I speculate without a test they won't be much better now. With this in mind, does this warrant me pushing the GP for further tests regarding anemia?

SlowDragon profile image
SlowDragonAdministrator in reply toILR2019

As vegan presumably you eat lots green veg ...

Vitamin B complex has folate in

Remember to stop taking B complex a week before any blood tests

Need to avoid all soya

ILR2019 profile image
ILR2019 in reply toSlowDragon

I don't eat a lot of processed food and tend to stick to fresh veg, salad and not as often as I should, fruit and consume very little sugar or sugary products. I don't drink coffee often (one or two cups a week) and no alcohol. Needless to say my Friday and Saturday nights don't particularly rock 😆

About once every couple of weeks I make a dish using soya mince (bolognaise etc) which I know is naughty and I do occassionaly have a non gluten free sourdough. That will have to stop now. I assume even a small amount of gluten can cause unwanted fluctuations.

humanbean profile image
humanbean in reply toILR2019

Where do you hide the protein in your diet? I can't see it anywhere.

ILR2019 profile image
ILR2019 in reply tohumanbean

I eat quinoa, legumes. I'll add things like sunflower and chai seeds to salads primarily for nutrients, but also texture. For meat dishes (curry or chilli for example) I will substitute meat for either fresh vegetables/sweet potatoes, mixed beans or chickpeas which are also filling.

humanbean profile image
humanbean in reply toILR2019

I strongly suspect you aren't getting enough protein. You can work out how much protein you need, based on your height and your approximate lean body weight, from this link :

dietdoctor.com/wp-content/u...

This article might be of interest too :

dietdoctor.com/food-policy/...

If you want to know how much carbs, fat, and protein different foods contain for different portion sizes I would recommend this book :

amazon.co.uk/Carbs-Cals-Car...

ILR2019 profile image
ILR2019 in reply tohumanbean

Thank you. I hadn't given protein an awful lot of thought tbh, but I do make a conscious effort to ensure I do consume protein foods on a daily basis. I'll take a look at your links and double check my recommended amount and adjust my intake accordingly. I was only made aware about importance of protein (and cortisol) for thyroid function a few days ago so I am also actively trying to swat up on these too!

SlowDragon profile image
SlowDragonAdministrator

Ft4 is only 30% through range....

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

suggest you increase levothyroxine to 125mcg daily and retest in 6-8 weeks

Jem23926 profile image
Jem23926 in reply toSlowDragon

I noticed that medichecks didn’t include a folate in my latest test results but was there last year. Have to see if it’s on a different test or just been dropped

SlowDragon profile image
SlowDragonAdministrator in reply toJem23926

Agghh ....yes they have just dropped it ....unless pay extra and get blood draw

So many tests, folate results were failing

Possibly cheapest option for getting all tested via DIY finger prick test - doesn’t include antibodies

TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

SlowDragon profile image
SlowDragonAdministrator in reply toJem23926

B12 is too low

Have you had testing for Pernicious Anaemia

Low B12 symptoms

b12deficiency.info/signs-an...

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

You may need sublingual B12 or B12 mouth spray as well as vitamin B complex

ILR2019 profile image
ILR2019 in reply toSlowDragon

I knew I could rely on the forum for advice. Thank you so much for responding 🙏.

I have used the Vitamin D calculator and it is showing to double my dose (actually slightly over double) so that's one point sorted. I'll up my intake accordingly for 2 weeks before adding the next vitamin which I think should be B12 as I want to speak to GP again about further iron tests. I was tested last year for PA, but results showed my MMA wasn't raised (METHYLMALONIC ACID 0.27 umol/L [0.1 - 0.42]). I don't pretend to know anything about PA though or understand the tests.

I have had a read about B12 on one of your supplied links. It mentions also taking a Vit B complex in addition to injections which I'm not on. Probably a dense question, but should I increase my daily B12 supplement and add B complex in addition or just take the B complex?

Sorry, probably seems like very stupid questions, but would it be normal/expected to be taking vit D, Vit B12, iron (and vit B complex?) supplements in addition to Levo on a daily basis? It seems like an awful lot of tablets! What order would you recommend taking them in? I take Levo an hour befor brekkie, vit D after brekkie. Would it be advisable to tale iron at bedtime and B12 at some other point during the day?

SlowDragon profile image
SlowDragonAdministrator in reply toILR2019

Yes...thyroid patients tend to rattle with lots of different supplements!

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, magnesium or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Taking Iron on its own away from everything, apart from vitamin C or orange juice ...as this can help improve iron absorption

Magnesium best taken at bedtime (or early evening if take levothyroxine at bedtime)

So daily regime might be

Levo

Breakfast

After breakfast

vitamin B complex

As vegan you will probably need separate sublingual b12 Or B12 mouth spray as well ....certainly for few months...but probably indefinitely

Vitamin D mouth spray with vitamin K2

Selenium

Lunch

Iron with Orange juice

Evening meal

Magnesium at bedtime

ILR2019 profile image
ILR2019 in reply toSlowDragon

Thank you once again. Supplementing so much is overwhelming! I'm on it 💪

SlowDragon profile image
SlowDragonAdministrator in reply toILR2019

That’s typical list of supplements for someone eating high meat protein, good fats and organic diet too

Obviously may be much harder to maintain iron and B12 as vegan

SeasideSusie profile image
SeasideSusieRemembering

ILR2019

I currently take 10ug vitamin D (GP recommened dose), 10ug B12 and 14mg iron daily. Clearly these are going to need to be increased (possibly doubled?).

• Ferritin 23.6 ug/L (Range: 13 - 150)

With a ferritin result this low in range I'd be wanting an iron panel to see if I have iron deficiency and a full blood count to see if I have anaemia. If the iron panel shows a decent amount of serum iron then taking iron tablets could raise your level too high. If you have iron deficiency or iron deficiency anaemia then your GP should be prescribing and you should be regularly monitored.

• Vitamin B12 - Active 43.100 pmol/L (Range: > 37.5)

Are you sure you're taking only 10ug (micrograms) B12? If so that's not going to help. A good B Complex will contain 400ug. Your Active B12 is very low, anything below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:

viapath.co.uk/our-tests/act...

Reference range:>70. *Between 25-70 referred for MMA

There is a link at the bottom of the page to print off the pdf to show your GP.

• Vitamin D 63.9 nmol/L (Range: 50 - 175)

10ug Vit D = 400iu and that is a child's maintenance dose.

The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L.

To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 3,500iu-4,000iu (75-100ug) D3 daily.

Retest after 3 months.

Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.htm

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

Antibodies fluctuate. Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

What should I now do with regards to my thyroid panel? Should I seek T3 or additional Levo (I have been given details to self source).

• TSH X 0.17 mIU/L (Range: 0.27 - 4.2)

• Free T3 4.16 pmol/L (Range: 3.1 - 6.8)

• Free Thyroxine 15.500 pmol/L (Range: 12 - 22)

These latest results don't show poor conversion, they suggest you need more Levo to increase your FT4 and see if that also raises your FT3.

January results showed FT4 at 63% through range with FT3 at 48.65% through range which isn't too bad and optimising nutrients, especially ferritin, may help with better conversion.

ILR2019 profile image
ILR2019 in reply toSeasideSusie

Yes, one tablet per day, each is 10ug. I started supplementing as my serum B12 was so low. I figured to start on one tablet per day and increase on next blood test. I feel like an idiot now for consuming barely more than thin air 🤦‍♀️. So should I scrap the B12 supplements and go straight to a vit B complex (one tablet a day to start with)?

With regards to TPO antibodies they have dropped since I last tested 8 months ago and have decreased from 190 to 141. Dose increases haven't made a significant difference to my T3

NOVEMBER 2019 (Levo increased from 100mcg to 125mcg daily)

TSH X 4.49 mIU/L (Range: 0.27 - 4.2)

Free T3 4.88 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 10.700 pmol/L (Range: 12 - 22)

JANUARY 2020 (Levo decreased from 125mcg daily to 100/125mcg alternate days)

TSH X 0.115 mIU/L (Range: 0.27 - 4.2)

Free T3 4.9 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine 18.300 pmol/L (Range: 12 - 22)

I guess the lack of T3 movement could also be attributed to crappy vitamin levels?

SlowDragon profile image
SlowDragonAdministrator

As a vegan you will almost certainly need to work hard And continuously supplementing to improve low vitamin levels

Getting vitamins optimal and levothyroxine fine tuned before even considering adding T3

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