Exhaustion after starting levothyroxine - Thyroid UK

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Exhaustion after starting levothyroxine

clairel996 profile image
13 Replies

Hi all,

Doctor prescribed a 25mcg starting dose of levothyroxine which I started on 6th Feb. I know it's only been a week but is it normal to feel so exhausted when starting the treatment? I have two young kids and just could not move myself to get out of bed before lunch time today. Lucky to have such a supportive husband but I'm not used to feeling like this, I'm really struggling.

Doctor has told me to come back in 6 weeks time for bloods to review but the thought of 6 weeks of feeling like this is just getting to me. I am waking up daily with a headache and exhausted after a long sleep.

Wondering if I should stop or need to persevere? Is it normal to feel so bad at the start of levothyroxine? Should it get better soon or will I see no improvement until a dose increase?

Advice appreciated!

Thanks

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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Very helpful profile info

Bloods monitormyhealth 6th Feb 2023

TSH 4.76 (0.27 - 4.2)

FT4 15.2 (12 - 22)

FT3 3.9 (3.1 - 6.8)

Vitamin d 51 (adequate)

Folate 17.1 (normal)

B12 221

Ferritin 79 (normal)

standard starter dose levothyroxine is 50mcg …..but you were lucky GP started you on levothyroxine as TSH not over 5 so stick with 25mcg for now and get dose increase after next blood test

It takes at least 2-3 weeks for each dose levothyroxine to slowly build up. You’re unlikely to see any change after a week…..then you should start to slow improvements…..but then as gets nearer 6-8 weeks and ready for next increase in dose symptoms can return ….this is good sign that ready for next increase

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

ALWAYS test early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine have you started on

Many people don’t get on with Teva brand levothyroxine

Are you taking levothyroxine waking or bedtime

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)

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

clairel996 profile image
clairel996 in reply to SlowDragon

Hi slowdragon, thank you for taking the time to read my post and reply! I've started on wockhardt brand and have been taking them first thing in the morning with water only and at least an hour before breakfast or coffee.

I've been taking a b-complex after lunch and take spray vitamin d and magnesium after dinner

If taking the levothyroxine at bedtime, should it be 2 hours after any food, including a cup of tea?

SlowDragon profile image
SlowDragonAdministrator in reply to clairel996

If taking the levothyroxine at bedtime, should it be 2 hours after any food, including a cup of tea?

Yes …..just water for at least an hour before taking at bedtime

I've been taking a b-complex after lunch and take spray vitamin d and magnesium after dinner

How long have you been taking vitamin B complex before this most recent test

Did you stop taking B complex 5-7 days before test?

which brand of B complex?

SlowDragon profile image
SlowDragonAdministrator

Looking on your profile page …..don’t think you have had thyroid antibodies tested yet

Request GP test thyroid antibodies for autoimmune thyroid disease at next test

What vitamin supplements have you been taking

Are you vegetarian or vegan

B12 is very low (extremely common when hypothyroid)

Do you have Low B12 symptoms 

If yes, request GP test for Pernicious Anaemia before starting B12 supplements

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

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

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

clairel996 profile image
clairel996 in reply to SlowDragon

I was a bit confused by the b12 as doctor test end of September was 431 Serum b12 ( range 197 - 771) But the monitormy health test last week iv just looked and it is active b12. I emailed for reference ranges but they replied saying they don't have a range only a lower limit which I was over so classed as "normal". Seeing as the two tests are testing different b12 (Serum vs active) I'm not actually sure how they correlate.

I've been using the igennus b-complex since october but have since read about the vitamin c content maybe interfering with absorption so was planning to try to source the thorne basic b when the bottle runs out, i wasnt in too much of a hurry as I noticed big improvement in folate so figured it was doing some good but now questioning if it has helped b12 much?

Edit to include: will definitely ask for the antibody test too, thank you for pointing that out!

Thanks again for advice and input! Have found this forum so invaluable with reading the different experiences !

SlowDragon profile image
SlowDragonAdministrator in reply to clairel996

oh if it’s active B12 it’s not low

I thought they tested serum B12

Usually active B12 result doesn’t go higher than 150 (on Medichecks test)

Ignore my comments about low B12 then

Nomorepharmacon profile image
Nomorepharmacon

Hi Claire,I've been diagnosed with Hashimoto's for 12 years.

Exact same feelings as yours when I first started.

Been on a roller coaster and it is currently very compromised.

Tried different medicines and nhs docs. Been off meds for a while and not well as the moment, but off neds due to the snags and bias against non- synthetic meds in the system, not an unwillingness to medicate.

I'm sorry that this does nor fully answer your question but can advice this#

Opt for meds at night.

Stck to a largely keto or paleo style diet.

Have several meals a day.

Act as if you are diabetic and plan for balanced blood sugar.

Likewise, think blood circulation.

Avoid white sugar and ultra processed food.

At least 20 to 30 mins exercise daily is not an option but vital.

Especially weight-bearing exercise such as push ups or weights or sprints but even a gentle jog. Punching something helps too but don't force yourself to exercise if it is rest you need. And warm up gradually and stretch.

Try deep breathing such as the Wim Hoff method. Especially when no energy stuck in bed.

Consider taking a day off the meds a week.

Get adequate sleep if you can.

Use raw garlic. One a day crushed to stay warmer and keep vampires away.

Crushed ginger in tea or raw ginger chewed is a daily essential. Back off of excess caffeine.

Keep researching.

Don't believe the ignorant docs and even the not so ignorant ones too much. They all follow NICENHD limitations on meds.

Get away for winter to a hot clime if you can. I.e for vit D. from the sun.

Maybe keep a journal.

Hope this helps.

Male 47. London.

tattybogle profile image
tattybogle in reply to Nomorepharmacon

i agree that most of those are very sensible recommendations for good health Nomoreph and i do many of them myself.... but why the suggestion to 'consider a day off the meds each week' ?

This suggestion leads to an overall dose reduction for the whole week (due to the long half life of T4) , and for someone like claire who has only been started on 25mcg which is already too low to have a beneficial effect on most people you are suggesting she consider reducing that dose to 21.5mcg / day ..... why ?

Levothyroxine is T4 , which i'm sure you know is a hormone, not a medication ~ call me pedantic , but i think it is important not to give new patients who are struggling , the wrong idea about what it is they are taking by calling it 'meds'

clairel996 profile image
clairel996 in reply to tattybogle

Hi tattybogle, thank you for this. I also feel the dose is so low that I'd worry skipping a day would make matters even worse. I Will stick it out and see how the bloods are on next appointment. Lab refused to test FT3 and FT4 last time so I tested myself so will probably arrange for this again so I know where I am at.

Thanks again for the input :)

Nomorepharmacon profile image
Nomorepharmacon in reply to tattybogle

Levo is a medicine. It says so on the packet. I remember the doc telling me the exact same 'it is not a hormone and not really a med' many years ago. Well it seems that this med/hormone is what triggered all of the worst symptoms you can imagine. Having read your profile, my experience is very similar and you have my sympathy because we are going through the same illness and facing similar barriers and challenges.The reason I advised to skip a day is because the body tends to 'breathe' and reset in the one off day and get some relief from te terrible side effects of the drug - which is everything that it is supposed to treat, but on stilts! And the meds may feel more effective when resumed plus it makes you less dependent on them.

I hear what you're saying about that not necessarily being right for someone just prescribed this.

All I can say is that this is my experience and I am not a doc.

Thank you 😊

tattybogle profile image
tattybogle in reply to Nomorepharmacon

i would say my experience of Levothyroxine is very different of yours .. i was diagnosed after symptoms of hypothyroidism for 4 years .. taking levo improved those symptoms.

I did not have any reaction (at all) to taking it for about the first week and a half ~ then felt a bit better for a couple of weeks then felt less good again, (but not as bad as i did before i started it ) Then as the dose was increased over the next 18 months the periods of feeling better lasted longer each time , and the drop off to feeling less good again was not as bad .

I have however had ongoing problems with crashing energy levels / post exertional malaise ever since being a on the full dose of levo ~ for which there could be many complex reasons ~ but taking it has no negative affect 'on the day of taking it' if you see what i mean .. .

But if i miss a day i always feel worse, not better.. and i can tell by about 2 pm if i have forgotten to take a morning a dose .. feels a bit like i'm running on adrenaline from about 11 am , then i conk out at 2pm and can't think straight .

I have occasionally stopped for 10 days .( just to see what happens to my TSH result ~ not because i don't want to take it ) and by day 10 i find it extremely difficult to function safely.

I also have serious problems after a few weeks if my dose is wrong , a little too much /too little and i'm in a mess .

But I know some people on here do have very real issues with taking it from day 1 and struggle to find a better solution to treating their hypothyroidism .. and there are others on her who find relief by having a day off ...so i'm not disagreeing with you experience .. i totally accept it .. but felt i should clarify that it isn't the same as mine .

lots of our 'real life' patient experiences about taking replacement thyroid hormones are unexplained .. by rights i "shouldn't" be able to feel the effect of missing a dose by 2pm . but i definitely can .

Nomorepharmacon profile image
Nomorepharmacon in reply to tattybogle

I hear you. In fact you have just written my own experience. The only difference being that I did not go to the doc with symptoms before diagnosis but simply as a routine check. I definitely did have some symptoms but never realised that at the time! I ahave been off meds for a few years now and been to hell and back on several occasions! Still, we all have our own journey despite the stark similarities and differences. It has been really intense to see how you faired, even the 2pm dips that the medics tell us aren't supposed to be happening and thus ignore or make you feel like it's all psychological. No it's not all psychological. It's very real. 😇

clairel996 profile image
clairel996 in reply to Nomorepharmacon

Thank you, I will definitely take the suggestions on board. I have improved my diet a lot but always room for refinement. I walk every day but need to try and include some weight bearing exercise, thanks for taking the time to reply :)

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