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
15 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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15 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

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

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.

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! :)

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