Can fatigue get worse the higher the levo dose? - Thyroid UK

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Can fatigue get worse the higher the levo dose?

Salkas profile image
26 Replies

Hi I cant give full blood readings as im waiting for them in the post. I can give you TSH so far. I'm a few days in on 100mg Levothyroxine. Fatigue seems to increasingly get worse. When I got to 4 weeks on 75mg it started getting worse, actually thought it woukd improve. I know I need all vits testing, I'm waiting till I get to 6 week on 100mg to do more bloods. Tsh

Was 3.8 (Levothyroxine 25mg)

Was 3.5. (Levothyroxine 50mg)

Now 2.41 (Levothyroxine 75mg)

As you can see tsh improving but fatigue getting worse. (Can't provide t4 or t3 at this stage, I'm waiting for them)

Question is can levo increase fatigue until the sweet spot is achieved?

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Salkas profile image
Salkas
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26 Replies
RedApple profile image
RedAppleAdministrator

'Question is can levo increase fatigue until the sweet spot is achieved?'

The short answer is yes. But it isn't the levothyroxine 'causing' fatigue. It's the fact that your body is still struggling to thrive on too low a dose of thyroid hormones.

Salkas profile image
Salkas in reply toRedApple

Thanks. For clarifying

RedApple profile image
RedAppleAdministrator in reply toSalkas

As Obsidian says below, it can be a long journey to wellness, and there's no quick fix unfortunately. 😔

Salkas profile image
Salkas in reply toRedApple

Is the fatigue like an exhaustion? I feel exhausted like my system is shutting down like a sedated exhaustion

RedApple profile image
RedAppleAdministrator in reply toSalkas

Yes, I think that describes it. The effect of there being too little thyroid hormone is cumulative, so your body has been struggling more and more to keep going. Although your dose has been increased, it still takes a long time to catch up from there not being enough hormone for many weeks, or months. Healing takes energy, and without enough thyroid hormone, your energy is constantly depleted. Hope that at least makes a little sense.

Do post your latest FT4 and FT3 when you have them, because this will help shed some light on what's currently going on.

Salkas profile image
Salkas in reply toRedApple

Thank you. So even though my tsh has dropped there is less thyroud hormone? Whys that?

arTistapple profile image
arTistapple in reply toSalkas

Your ‘dose’ is in the process of replacing your own thyroid’s efforts. Your body may have been ‘running on empty’ for a very long time, doing it’s best, before the introduction of Levothyroxine. There is a massive amount of rebalancing required. This takes time.

“Just take this little white pill, that you must take for the rest of your life and you won’t know yourself in a couple of months.”

I wish, along with at least 20% of finally diagnosed individuals.

Obsdian profile image
Obsdian

It took me well over two months to feel any effect from going from 75-100. In fact, it's only last week that I started to feel better and I have been on this dose since October.

Salkas profile image
Salkas in reply toObsdian

Thank you. Glad its helping you. Hopefully this will be it x

Wheat profile image
Wheat in reply toObsdian

thank you for reminding me it can take a long time to feel better again x

SlowDragon profile image
SlowDragonAdministrator

Which brand of Levo have you been taking for 100mcg

Is this different to 75mcg dose

What vitamin supplements are you taking

Please add most recent vitamin D, folate, ferritin and B12 results

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

Salkas profile image
Salkas in reply toSlowDragon

I'm still on same brand, almus/accord..I'm waiting to get tests done for vits.

Sleepman profile image
Sleepman

Have you checked for gluten intolerance? Especially if autoimmune flavour Forum advises good (highish) levels of ferritin, folate , vit b12 and D. Have these been tested?

Salkas profile image
Salkas in reply toSleepman

I'm not gluten intolerant. Had bloods. Need to get other vits tested

Sleepman profile image
Sleepman

My bloods were clear but I cannot take gluten. Good luck.

Salkas profile image
Salkas in reply toSleepman

So how did you figure that out? Elimination?

Sleepman profile image
Sleepman in reply toSalkas

Yes elimination. I could have paid for endoscopy to check inside my stomach or wait a year or so for NHS.

I stopped gluten a year before finding out about hashimotos. I had stomach issues, bloating and loose.

I had felt a bit better stopping gluten for 4 weeks a couple of months before going back on gluten for blood test

Non celiac gluten sensitivity NCGS is what I think it is.The antibodies that attack our thyroid glands, also like munching the gluten that gets into the blood stream too. Leaky gut or something.

Forum seems to direct at Dr Isabelle Wetz.

Once my thyroid was sorted I had some gluten as a test and it had mecrunning to the loo and feeling yucky for a week. My Mum is the same but she had endoscopy 20 odd years ago.

Salkas profile image
Salkas in reply toSleepman

Ok thanks for sharing. A lot of it is a blind trial isn't it. I stopped gluten and my bloating got worse when I started eating gluten the bloating was not as bad. I think once I am fully titrated on levothyroxine it will make it easier to work out what Is what. My friend has a client that had hashimotos on levothyroxine and after two years came off it all and feels much better as she found an ayurvedic practitioner. Im going to see the same practitioner but keeping neutral as what works for one doesn't always work for another.

Sleepman profile image
Sleepman in reply toSalkas

I don't think anyone has mentioned core nutrition stuff. Forum advises Vit b12 d folate and ferritin levels need to be tested and good/high. I would post results in new post to get the attention of the A Team.

You have me googling ayurvedic.

I would be checking T3 levels. Blood tests about £30 and NHS will not do.

Many on this forum are poor converters or other complications.

Salkas profile image
Salkas in reply toSleepman

Thanks. Going to get comprehensive bloods done when I reach 7 week on this new levo dose.

Coulby profile image
Coulby

Wow..I find that interesting...I start my first dose of Levo next Tuesday at 100mg.I wonder why the specialist build my dose up !...I don't think I could get more tired 🌻

pennyannie profile image
pennyannie in reply toCoulby

I too was started on 100 mcg T4 after RAI thyroid ablation - do not worry -

we have had a medical intervention and in a very different position to people who have a thyroid but are hypothyroid -

Have sent you another message on your post from a few days ago :

Caradoc1a profile image
Caradoc1a in reply topennyannie

I too had RAI (12 months ago) and am now hypo. I'd be interested to get a clearer understanding of how this situation differs from people with thyroid which is underactive - with regard to managing levels. Thanks

pennyannie profile image
pennyannie in reply toCaradoc1a

RAI is a toxic substance that burns out / disables the thyroid in situ - for some their thyroid is fully disabled within a month - but we do not know for sure - as I'm not aware here is any follow up scan after RAI - with the presumption being the thyroid fully disabled within around 6 months.

After RAI the HPT axis - The Hypothyroid - Pituitary - Thyroid feedback loop on which the TSH relies on- is broken - and you must be dosed and monitored on your Free T3 and Free T4 results and not a TSH - which goes against all thr guidelines and most doctors understanding.

By taking RAI - your thyroid has in effect been turned off and your TSH receptors sites unable to respond in the normal manner - out of the power - and without a thyroid and all that the thyroid is responsible for doing within your body.

pubmed.ncbi.nlm.nih.gov/295...

pennyannie profile image
pennyannie in reply toCaradoc1a

A fully functioning working thyroid woul be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100mcg -

So, this is what you have lost - in as far as just the T3 and T4 thyroid hormones go -

and so in my mind -

what you need to get back to through taking thyroid hormone replacement.

Coulby profile image
Coulby in reply topennyannie

ohh of course..I didn't think of that 🙄 too tired x

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