Those that couldn't tolerate T4, what symptoms ... - Thyroid UK

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Those that couldn't tolerate T4, what symptoms did you have?

Holidays4 profile image
29 Replies

I first started Levothyroxine in 2018 at 25mcg, then 50mcg where my doctor left me. As soon as I started taking Levothyroxine I developed anxiety and depression. After 9 months I stopped taking it and felt so much better and my mood lifted completely. Fast forward. Started taking Levo again 3 years ago and as soon as I got to 50mcg daily the anxiety and depression started and I've been living with these symptoms ever since. It's so bad that I don't want to do anything but force myself to walk each day to try and improve my mood. Is this a side effect of Levothyroxine? I have just this week started to take 75mcg Levo + 10T3 (previously taking 50/75 alternate days + 10 T3 daily).

Before diagnosis the only symptom I had was tiredness, no anxiety or depression at all. I only became ill after taking Levothyroxine.

21.2.25 - Blood tests on 50/75 Levo and 10T3 (followed protocol but blood test was 11.30am)

TSH 0.18 (0.27 - 4.20)

T4 13.7 (12.0 - 22.00)

No T3 result. Doctor is going to repeat bloods to include T3 on 1 April.

Ferritin 28 (13 - 150)

Folate 3.6 (over 2.9)

B12 473 (over 178)

I'm supplementing with D3/K2, B complex, gentle iron, omega 3.

Am I intolerant to Levothyroxine or under medicated? Even with dose increases I have never felt any improvement in the anxiety and depression. I take anti anxiety medication and anti depressants but they don't make any difference.

I'm so grateful for this group and read up every day to learn as much as possible and have read other posts of Levothyroxine making people feel worse and wonder if I am one of them.

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29 Replies
GlowCoach profile image
GlowCoachAdministrator

Have you started taking the supplements since these results or before?

A lot of your problems may be due to low vitamin levels. Working hard on those will help your thyroid replacement work better.

Exactly which B complex and how much vit D are you taking?

Theres no vit D result.

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

This heme iron is well tolerated and works well. Suggest you try it.

threearrowsnutra.com/en-uk/...

When taking T3 its essential to test a full hyroid panel of TSH, FT4 & FT3. Suggest you buy your own tests to be able to monitor your own levels to get well if NHS wont.

75mcgs Levo + 10mcg T3 is a fairly low dose and your FT4 is showing you are under replaced. You may well need 100-125mcgs Levo in the end.

I doubt you are intolerant of Levo, just not got vitamins right yet or optimally replaced with Levo + T3.

Holidays4 profile image
Holidays4 in reply toGlowCoach

Hi GlowCoach

Thank you for replying. I've been taking the Vitamin D 2,000 and Omega 3 for 3 years but have just started the Igennus B complex and iron after these blood results. Will buy the Three Arrows you have recommended. i really do hope I'm under medicated as am really struggling with the depression, nothing seems to help. With such a low TSH it will probably be hard to get my GP to increase my Levo dose. I had to ask for a trial to take 75mcg. Vit D was on the blood request but wasn't done. I'll ask again when I have the re-test.

Thank you so much for your help.

GlowCoach profile image
GlowCoachAdministrator in reply toHolidays4

Most people need a minimum of 3,000iu of vit D+K2.

You probably need the full dose of Igennus B complex to get 400mcgs folate, thats 2 tablets a day.

What have you tried diet wise?

Many Hashi people need strictly gluten free. Others need to remove dairy as well.

Some benefit from removing processed foods from their diet. Sugar and carbs can be an issue for some too.

For sure your FT4 is too low and on T3 most peoples TSH would be almost non existent. Yours at 0.18 is relatively high, showing you need more thyroid hormone.

Holidays4 profile image
Holidays4 in reply toGlowCoach

Yes, I've tried gluten free but not dairy free. Thank you, I'll increase the B complex.

SlowDragon profile image
SlowDragonAmbassador

These results show you are on inadequate dose

And vitamin levels are extremely poor as a result

I have just this week started to take 75mcg Levo + 10T3 (previously taking 50/75 alternate days + 10 T3 daily).

Which brand of Levo are you taking

Which brand of T3

Aiming for Ft4 and Ft3 at least 50-60% through range

Ferritin at least over 70:

Folate at least around 20

Serum B12 at least over 500

No vitamin D test results

How much vitamin D are you taking

Test twice yearly when supplementing

Can test via NHS private testing service

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.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

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

Holidays4 profile image
Holidays4 in reply toSlowDragon

Hi SlowDragon

I take Accord Levo and Roma T3. I use the Better You VitD/K2, 2,000 a day.

GP has said nothing about low folate or ferritin. I have just started supplementing with Igennus B complex and gentle iron.

My next blood test is booked for 9.00am on 1 April and I will have only been taking 75mcg/10T3 for 4 weeks.

SlowDragon profile image
SlowDragonAmbassador in reply toHolidays4

Rebook test for 6-8 weeks.

Get full iron panel test done now and come back with new post once you get results

And also test vitamin D

Dawney63 profile image
Dawney63 in reply toSlowDragon

Tesco have better you vitaminD+K2 buy 2 get one free

Vitamin D
SlowDragon profile image
SlowDragonAmbassador

What’s GP /endo doing about deficient ferritin

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 3-5 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

monitormyhealth.org.uk/anae...

10% off code here

thyroiduk.org/testing/priva...

Look at increasing iron rich foods in diet

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

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

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.

SlowDragon profile image
SlowDragonAmbassador

Folate 3.6 (over 2.9)

B12 473 (over 178)

Folate is very poor

Which B complex are you taking

You need a separate B12 as well

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

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

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

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

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Great reply by @humanbean on B12 here

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...

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 and may need 2 per day and/or may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-6 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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 if last test result serum B12 was below 500 or active B12 (private test) under 70

Holidays4 profile image
Holidays4 in reply toSlowDragon

Thank you SlowDragon.

It sounds like I need to get separate B12 and Folate to top up the B complex and thank you for the recommendations. I shall increase the Vit D spray to 3,000.

Thank you very much for your help

SlowDragon profile image
SlowDragonAmbassador in reply toHolidays4

Don’t increase vitamin D, get level tested

Very easy test to do

See what result is

SlowDragon profile image
SlowDragonAmbassador in reply toHolidays4

It sounds like I need to get separate B12 and Folate to top up the B complex

Yes as folate and B12 both still low

How long had you been taking B complex before this test

And how long before the test did you stop it?

SlowDragon profile image
SlowDragonAmbassador

Lastly you need to know if your hypothyroidism is autoimmune by testing BOTH TPO and TG antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Retest thyroid levels and vitamins 2-3 months after increase in dose Levo

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

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

Randox FULL thyroid test including both thyroid antibodies just £31

Test at home or in clinic

Also available via Amazon

randoxhealth.com/en-GB/at-h...

Holidays4 profile image
Holidays4 in reply toSlowDragon

Yes, I had high TPO antibodies.

SlowDragon profile image
SlowDragonAmbassador in reply toHolidays4

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

Hashimoto's 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.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies

So your GP should have tested for coeliac disease when you first were diagnosed

If not been done request it is BEFORE trial Gluten Free

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

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 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...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Recent research in China into food intolerances with Hashimoto’s

healthunlocked.com/thyroidu...

More interesting Chinese research on Hashimoto’s and leaky gut

nature.com/articles/s41598-...

humanbean profile image
humanbean

I felt like I had the flu when I took Levo in the beginning. My tolerance improved very slowly as my nutrient levels improved, particularly iron.

I think my high cortisol had an unwelcome influence on my tolerance as well.

Holidays4 profile image
Holidays4 in reply tohumanbean

Hi humanbean

I wonder about my cortisol too as I have fibromyalgia and the rheumatologist advised that fibro causes a dysregulation of the HPA axis.

My only adverse effects are the anxiety and depression and I also cannot get out of bed even sleeping for 12 hours. I've never felt so ill for so long as after taking Levo.

greygoose profile image
greygoose

I have never been able to tolerate T4, not even in NDT. My symptoms were as humanbean describes them, like coming down with flu, just a general all over feeling of not well. Plus fatigue and weight-gain.

And I struggled for several years - can't remember how long exactly - trying different doses - got up as high as 200 mcg. I optimised my nutrients, I took hydrocortisone for my low cortisol, I tried adding T3 - didn't help. I tried NDT and that was even worse! I got up to six grains and still felt like death. But depression and anxiety quite definitely were not part of my symptoms.

You are most definitely under-medicated at the moment, and depression and anxiety are hypo symptoms. And the fact that you didn't have those symptoms before starting levo means nothing. It's quite common for new symptoms to appear when you start taking levo - especially when the dose is too low - and 25 mcg is a very low dose, I really don't understand why doctors insist on starting people on it when they're over 60. But that's doctors for you! :)

tge1230 profile image
tge1230 in reply togreygoose

Hi, it seems common to have hypo symptoms appear/increase on commencing Levo, and this has been, and continues to be, my experience too. can anyone explain why this happens please?

SlowDragon profile image
SlowDragonAmbassador in reply totge1230

Because Levo doesn’t “top up” you own thyroid output, it replaces it

So when we start on levothyroxine thyroid levels overall frequently drop lower

So it’s important to be on high enough dose levothyroxine as fast as tolerated

Low vitamin levels also frequently become more apparent as metabolism slowly improves on Levo

So many (most?) will need to supplement vitamin D, vitamin B complex and magnesium daily

Often need separate B12 as well initially

And many people struggle to improve and maintain GOOD Ferritin

tge1230 profile image
tge1230 in reply toSlowDragon

Because Levo doesn’t “top up” you own thyroid output, it replaces it. So when we start on levothyroxine thyroid levels overall frequently drop lower. So it’s important to be on high enough dose levothyroxine as fast as tolerated.

Understood, thank you.

Low vitamin levels also frequently become more apparent as metabolism slowly improves on Levo

Is that to say that vitamin levels actually drop as metabolism improves - I'd have thought that as the metabolism improves more nutrients can be gained from food, not less?

SlowDragon profile image
SlowDragonAmbassador in reply totge1230

It becomes more obvious your vitamin levels are low

Also standard treatment is levothyroxine only (Ft4)

So this tends to result in lower Ft3

It’s Ft3 level that maintains good gut function and vitamin levels

Hookie01 profile image
Hookie01

Hi, I struggle with thyroid meds, but I read something interesting last night. I have very low ferritin, it's now down to 12, been dropping like crazy. But this medical study was about people with low ferritin and taking levo. Whilst deficient in ferritin, they suffered with side effects from taking levo. They supplemented with iron for 7 weeks or so, started levo again and they could tolerate it. Crazy! Your ferritin is very low, could be a possibility it's that that's not helping?

BigBlueBear55 profile image
BigBlueBear55 in reply toHookie01

Yeah, the first time i took it i had raised my iron levels beforehand but still can't tolerate it. I am now thinking my adrenals just can't cope with it and looking back at certain incidents over the years it has become obvious, shame i have had to figure it out all by myself.

Holidays4 profile image
Holidays4 in reply toBigBlueBear55

Hi BigBueBear55

I also wonder if my adrenals can't cope. I have absolutely no stress tolerance at all and often feel like I can't cope. What are your symptoms and how did you figure it out? Have you been able to improve.

BigBlueBear55 profile image
BigBlueBear55 in reply toHolidays4

Well i have not even had chance to speak to the endo about my problems, they just gave me the Levo and sent me on my way and then covid happened. During covid i had all sorts of problems and an episode of psychosis and what i believe may have been an adrenal crisis, all the symptoms match and believe over my lifetime similar events the last one i almost collapsed. Very low blood pressure if i don't take plenty of salt, heat intolerance, stress intolerance ect. Felt like i was dying each time, sure the gp would just label it anxiety which was not the case.

DippyDame profile image
DippyDame

You are undermedicated not intolerant to levo.

Levo/ T4 is a replacement hormone, it doesn't top up what already exists.....you need more.

The symptoms indicate that you need a higher dose of levo....your body is recognising this and basically crying for help

just this week started to take 75mcg Levo + 10T3 (previously taking 50/75 alternate days + 10 T3 daily).

Why are you taking T3 when you appear to have no results to base this on?

Who prescribed the T3....it should have been an endo? What was their reason for doing so

We don't usually add T3 until 100mcg levo has failed to help and unless there is evidence of poor T4 to T3 conversion ( high FT4 with low FT3)

Your FT4 is rock bottom.....but taking T3 lowers T4 and TSH

So your results are all over the place!

Do you have your diagnostic labs....i.e. those before levo was initiated. If so post them please. You are legally entitled to request results from your surgery

Endo maintains it’s not my thyroid. ......this from your bio!

This is nonsense....your labs clearly show hypothyroidism. This endo sounds like a diabetic, rather than a thyroid, endo.... his reasoning is weak

I'd suggest you were put on too high a dose of T3 and this combined with inadequate T4 is causing the symptoms

T3 is not a panacea of all ills....and I speak as someone who needs 100mcg T3-only to function...it must be understood and I don't think this endo does that!

Most people will clear T3 from the body in around 4 days so in your shoes I would stop the T3 then after 6 weeks on the 75mcg T4 test again

Those results should give you a clearer picture of what is going on...and will likely show you need more levo

So, initially you will likely need more T4 and only if conversion is shown to be poor might you need T3

As the others say you need to optimise vit D, vit B12 folate and ferritin to support thyroid function

I take anti anxiety medication and anti depressants but they don't make any difference.

I suggest that once your thyroid function is correctly medicated you can forget about the above...anxiety is a symptom of undermedication!

thyroiduk.org/signs-and-sym...

I hope something here resonates

andyjs2 profile image
andyjs2

Holidays4, since your only symptom was being tired before starting thyroid meds, I wonder if it would make sense to stop all thyroid meds for the time being (not sure how quickly to do that?), restabilize without them, and then concentrate on getting all vitamins and minerals in good shape and address your hashi’s as best you can to see how you feel?

Hashi’s may well have already started to impact your thyroid, but you won’t know how much until you get everything else in good shape first.

It is possible that at the moment you don’t need thyroid hormone replacement just yet. Just getting hashi’s under control as best you can and your vitamins and minerals where they need to be might do the trick without the need for thyroid meds?

Just a thought….

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