Help : I take 100mcg everyday Just had my blood... - Thyroid UK

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Mohammed94 profile image
39 Replies

I take 100mcg everyday

Just had my blood test done and I just wanted to know should I stick to 100 mcg or do I lower it because it looks like my FT4 is getting higher

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Mohammed94
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39 Replies
SeasideSusie profile image
SeasideSusieRemembering

Mohammed94

How do you feel?

Your results are current in range so no need to alter your dose.

Your TSH is high considering that your FT4 is at the top of the range, one would expect to see TSH less than 1 with that FT4 level.

Did you get any other tests done, in particular FT3 and thyroid antibodies (vitamins would also be good) or just TSH and FT4?

Mohammed94 profile image
Mohammed94

I feel okay only problem I get sometimes is that I’m anxious and I feel I have a slight social anxiety I thought maybe this is because I’m taking too much levothyroxin

Mohammed94 profile image
Mohammed94

I’ve recently sent over my bloods I’m just waiting for the results for my full thyroid profile I will upload it as soon as I get them, hopefully Monday

Jazzw profile image
Jazzw

Mohammed94, did you take your levothyroxine before the test? I might be wrong but it looks to me as though it’s possible that your FT4 is high in range simply because it was freshly in your system—given your TSH is over 2.0.

Mohammed94 profile image
Mohammed94 in reply to Jazzw

I took it at 6am then done my blood test at 12pm

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

Last dose of levothyroxine should be 24 hours before test

Ideally all thyroid tests should be as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before

Essential to test vitamin D, folate, ferritin and B12 too

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Folate results was 6.05 nmol/L

Active b12 was 150 pmol/L

Ferratin was 310 ug/L

Mohammed94 profile image
Mohammed94 in reply to Mohammed94

I’m still waiting for my vitamin d I expect it to be low

And I’m still waiting for my full thyroid blood test results

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

Do you supplement B12?

Or have B12 injections

Folate is on low side, but not low enough for GP to prescribe

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

thyroidpharmacist.com/artic...

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...

How much vitamin D do you supplement?

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

To be honest with you I don’t take no vitamins at the moment I recently done my blood test with Thriva to see what’s low so I can see what vitamins to start supplementing. I will go ahead and buy the igennus super b complex right now, thank you. Just waiting for my vitamin d results from Thriva I’m hoping I get them today so I can see how much vitamin d I need to take and also still waiting for my full thyroid results which I will upload as soon as I get them

Mohammed94 profile image
Mohammed94

I know my antibodies will be really high seen as I was diagnosed with hashimoto 2 years ago but felt that I had it for years and years.

Mohammed94 profile image
Mohammed94

Thank you all for you’re reply’s once the results come I will upload them. Have a good day :)

SlowDragon profile image
SlowDragonAdministrator

So you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

What’s your current diet like?

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

I’m gonna go ahead now and order the coeliac blood test now too. Thank you for you’re help I really appreciate it, very comforting

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Hi, I’m still waiting for my test results there was an error at there end so I need to re due the blood test. Will post up the results as soon as they come.

I have slight issue I’ve been finding it really hard to sleep and if I don’t sleep that much it really effects me when I wake up I’m really really moody and anxious it’s like my whole body is not working properly also slight social anxiety and I wake up really sweaty. I need to break down this problem I don’t know if it’s the levothyroxin or maybe the zma that I take before I sleep or maybe it’s the gluten that I eat or maybe it’s the lack of sleep I’m getting. I’m gonna try not take zma today then tomorrow see how I feel. I’m also waiting to do the coeliac test and I’ve started taking my vitamin b supplements today

Mohammed94 profile image
Mohammed94 in reply to Mohammed94

I’ve spoken to my GP and they’ve prescribed me with citalopram but I will never start taking such thing they said it will help with sleep and social anxiety. GP is honestly useless, too busy following government guide lines

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

Yes they’d rather chuck antidepressants at thyroid patients than consider actually treating the patient correctly

Obviously you need to test TSH, Ft4 and Ft3

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Sure :)

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

I forgot to include that I have no appetite at all during the day and that I’ve recently changed brands with the levothyroxin maybe it might be the levothyroxin and I just have to be patient for my body to get used to it

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

Which brand were you on?

Which brand of levothyroxine are you currently taking?

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems.

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

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

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Hi sorry for the late reply, I’m taking Aristo at the moment but the reason I changed was because the previous was giving me side effects I’ve tried teva, mecuary pharma and I can’t remember the last one. I wish I could take Levothyroxin at bed time but I’m afraid I will not be able to sleep. I guess I’ll just wait for the full thyroid check results and then hopefully we can move on from there on which direction to take

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Triiodothyronine (FT3) - 5.7

pmol/L

Thyroid-stimulating hormone (TSH)- 1.93

mIU/L

Thyroglobulin antibodies (TgAB)- 41.7

kU/L

Thyroid peroxidase antibodies (TPOAb) - out of range very very high

Thyroxine (T4)- 102

nmol/L

Free thyroxine (FT4) - Free thyroxine (FT4)

Vitamin D- 51

nmol/L

Mohammed94 profile image
Mohammed94 in reply to Mohammed94

Levothyroxin was taken 24 hours prior to the test

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

Please add ranges on all results (Figures in brackets after each result)

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

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

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

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be 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

If taking magnesium supplements these should be four hours away from levothyroxine

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...

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Actually I can

Mohammed94 profile image
Mohammed94

I will need to make new post because it doesn’t allow me to add pictures

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

Which company did test?

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Thriva

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

So ranges are standard ones we see most of time

TSH 1.93 (0.2-4.2)

Ft4 please add result

Ft3 5.7 (3.1-6.8)

TPO antibodies - please add actual result

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Please have a look at my picture above it has been updated, thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

Definitely not lowered ...if anything slightly increased

But probably should stay as you are on 100mcg

Best to Only change one thing at a time

Have you already started on daily vitamin B complex for low folate

Wait at least 2 weeks after starting vitamin B complex before starting vitamin D

Then consider adding (one at time) ....magnesium (at least four hours away from levothyroxine) , vitamin K2 mk7 (if not in combination with vitamin D supplement)

Selenium supplements can help improve conversion of Ft4 to Ft3 as well

Work on improving low vitamins over next 2-3 months

Have you organised coeliac blood test yet?

Trying absolutely strictly gluten free diet over next 3-6 months

Retest thyroid levels in say 3 months

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

I’m currently waiting for my coeliac kit to arrive

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Once you have a look at the pictures I just need to know if the 100mcg levothyroxin should be the same or lowered to maybe 75mcg

Also how much vitamin d should I be taking seen as I just got the results.

Thanks for your help

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

Vitamin D calculator here

grassrootshealth.net/projec...

Aiming to improve to at least around 80nmol-100nmol

100nmol is equal to 40ng/ml

endmemo.com/medical/unitcon...

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Thank you very much for all you’re help, much appreciated.

SlowDragon profile image
SlowDragonAdministrator

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Essential to regularly retest vitamin D, folate, ferritin and B12 with Hashimoto’s...

At least annually

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Hi so I’ve done the gluten test and it’s come negative meaning I don’t have celiac I’ve been taking my vitamin d and vitamin b complex but still for no reason get stressed really easy, moody really easy, anxiety too and brain fog. The only thing that helps me is a coffee but I’ve stopped drinking it. What’s the next step you think I should try I’m also taking bio cult too. Is there a dairy test I could maybe try ?

SlowDragon profile image
SlowDragonAdministrator in reply to Mohammed94

So now you have done coeliac test you can trial strictly gluten free diet

Coeliac test was only to rule out coeliac

Majority of Hashimoto’s patients are gluten intolerant not coeliac

The only way to know if that includes you is to trial strictly gluten free diet

Suggest you reread all those links on gluten intolerance I gave you

Mohammed94 profile image
Mohammed94 in reply to SlowDragon

Yes yes yes okay I will go on a strict diet and follow your recent reply on a strict gluten free diet. Thank you once again :)

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