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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Holidays4
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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.
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.
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.
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
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
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.
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
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
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
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
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.
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
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
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
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
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
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
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.
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!
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?
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?
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?
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.
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.
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.
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!
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?
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