Why am I still feeling tired after taking Levo - Thyroid UK

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Why am I still feeling tired after taking Levo

gedebe profile image
21 Replies

I, am a male 47yrs, being diagnosed with a deficiency in FT4 and has started taking Levo for 12.5mcg (Euthyrox) for 1 month. After some improvement on my FT4, my Endo decide to increased a bit ie. from Monday - Thu, 12.5mcg and from Fri - Sun, 25mcg.

I still remain as tired as before and the funny thing is the pattern of tiredness will peak when I am about to feel hungry ie. I will be feeling sleepy until when I wake up feeling fresh, I feel hungry. This pattern is ever repeating almost with each meal.

My reading:

Before taking Levo, in bracket is the range

TSH 3.87 (0.35-4.55)

FT3 4.1 (3.5-6.0)

FT4 9.9 (12.2-22.4)

Cortisol 609 (AM: 145-619, PM: 95-462) test was done in AM

After taking Levo, 12.5mcg for 1 month

TSH 2.81

FT3 3.9

FT4 10.6

For taking Levo 25mcg on Fri - Sun and 12.5mcg on Mon - Thu, I will have to take it for 1 month until the next blood test.

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gedebe
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21 Replies

😮 you were started on 12.5mcg!? Do you have heart problems? Because if not, you should've been started on 50mcg. 12.5 is less than a child's starter dose!

gedebe profile image
gedebe in reply to

I dont' have a heart problem and that's what some senior forumers was commenting also. My endo stressed that she will want to increase it bit by bit and blame my tiredness to depression. I do take depression medicine, Effexor XR (Venlafaxine) 75mg and started taking it because of the same complication which is tiredness

in reply to gedebe

Likely depressed due to T3 (or at least it will be a contributing factor.)

We need to see the ranges to your results to comment properly but it looks like your T3 is low. Can you add the ranges please?

gedebe profile image
gedebe in reply to

I've added in my 1st post. And I wonder why you and forumer localhero seems to suggest that my FT3 is low when it fall into the normal range?

in reply to gedebe

Well the bottom of the range is 3.5 and you're on 3.9.

Can you not see that is low in range? You don't need 'out of range' results to feel unwell.

3.5 isn't a cut off point whereafter you're symptomatic, it's a sliding scale.

The TSH Normal Range should be 0.4 to 2.5 mU/l, not 0.4 to 4.0 mU/l.

I will be providing full sourcework for that on my own page.

Your FT3 appears far too low, and like my own FT3 of 4.0 pmol/l which needed boosting to more than 5.9 pmol/l to be healthier, maybe you need to look at that.

Now for the important part: FT3 deficiency may cause pancreatic beta cells to undergo premature apoptosis (early beta cell death) inducing diabetes . . It may also cause premature death of cardio-myocytes. Don't panic. just work to get your FT3 back to a value that is normal for you, and any harm done should be undone.

Please ask your doctor to request a blood test for Interleukin-6 (IL-6) and C-Reactive Proteins (CRP), so that you can monitor any transition from Primary Hypothyroidism to "Non-Thyroidal Illness Syndrome" aka secondary, tertiary or central hypothyroidism.

Low FT3 may induce premature pancreatic beta cell death and the production of IL-6 (a cytokine), which will suppress the action of Deiodinase D1 and activate Deiodinases D2 & D3 with an accompanying reduction of TSH.

Jazzw profile image
Jazzw in reply to The_Roaring_Mouse

The TSH Normal Range should be 0.4 to 2.5 mU/l, not 0.4 to 4.0 mU/l.

I will be providing full sourcework for that on my own page.

Just to comment on your first point—the TSH range is specific to the lab which undertakes the test.

I’m not arguing that the range isn’t too wide—it absolutely is—but it’s incorrect to say that all TSH ranges should be identical.

And I would imagine most U.K. GPs would laugh you out of the surgery if you demanded a interleukin-6 test. We have enough trouble getting them to do basic thyroid checks.

I note that you’ve referenced providing more information on your “own page”. Once again, you may find yourself breaching forum rules. If you have evidence for what you say by all means post it here in the forum but if you promote your own page you may find that your posts are deleted. (See rule 25 here healthunlocked.com/thyroidu....

tattybogle profile image
tattybogle in reply to The_Roaring_Mouse

Your reply is likely to cause confusion...

"any transition from Primary Hypothyroidism to "Non-Thyroidal Illness Syndrome" aka secondary, tertiary or central hypothyroidism."

?? these are all very different conditions.. non thyroidal illness syndrome is NOT 'also known as' secondary/central /tertiary hypo'..

each of these has it's own specific cause , in the hypothalamus /pituitary etc .. whereas 'non-thyroidal illness syndrome' is a natural reaction of the H/P/T axis to severe acute illness/trauma, and is unrelated to thyroid disease.

Localhero profile image
Localhero

I’m sorry you’re feeling tired and hungry!

What are the ranges associated with these blood tests? Also, have you had vitamin D, vitamin B 12, folate and ferritin checked?

At first glance, while your TSH has come down, your free T’s are both very low. It’s your low T3 in particular that is causing symptoms.

12.5mcg, even with the occasional uplift, is a shockingly low dosage. I personally found that, when I began to take T4 at first, my symptoms, including tiredness, depression, and, oh yes, unrelenting hunger, got much worse. I am a 60 year old woman and am now on 112.5mcg a day T4 plus 7.5mcg T3 and am starting to feel much better. I’m not suggesting this is the right amount for you, only trying to give a sense of how woefully under medicated I think you are and how it’s that that’s causing your issues right now.

I’m not sure if I were in your shoes that I’d be waiting another month in the hope of another breadcrumb of uplift. You might want either to go back to your GP (who frankly seems a bit clueless) or get a second opinion elsewhere.

gedebe profile image
gedebe in reply to Localhero

same respond here as I wonder why you and forumer plant_lady seems to suggest that my FT3 is low when it fall into the normal range?

Localhero profile image
Localhero in reply to gedebe

Normal doesn’t mean optimal, especially when we’re on thyroid medication. I seem to need both my T4 and T3 high in range (around 70%) to stop feeling symptomatic. To paraphrase a doctor whose name now escapes, shoe size 5 is normal (it falls inside the normal distribution of shoe sizes), but if your feet are size 7, you’re going to be pretty uncomfortable in size 5s.

SlowDragon profile image
SlowDragonAdministrator

Looking at previous post your endocrinologist has diagnosed pituitary issues

Have you had adrenal levels tested. Cortisol and DHEA?

Endocrinologist has started you off extremely slowly on levothyroxine. Possibly because of pituitary/adrenal complications

Standard starter dose of levothyroxine is 50mcg and dose is typically slowly increased upwards in 25mcg steps until TSH is around 1.

Levothyroxine doesn’t top up failing thyroid, it replaces it. Guidelines on dose levothyroxine eventually required is usually around 1.6mcg levothyroxine per kilo of your weight

But we start slowly, and increase slowly upwards. In your particular case endocrinologist has started extremely slowly

gedebe profile image
gedebe in reply to SlowDragon

I've added cortisol into my 1st post though I think my endo did not test my adrenal. My endo aim is to raise my FT4 into the normal range and if i still feel tired at that time then it must be my depression, she claimed

SlowDragon profile image
SlowDragonAdministrator in reply to gedebe

How much do you weigh in kilo approx?

Likely to need to be on at least 100mcg levothyroxine per day…

But we frequently have to increase dose levothyroxine SLOWLY Upwards

gedebe profile image
gedebe in reply to SlowDragon

I am 50kg

SlowDragon profile image
SlowDragonAdministrator in reply to gedebe

So likely to need eventually somewhere between 75mcg and 100mcg

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

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

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more, some less

healthunlocked.com/thyroidu...

gedebe profile image
gedebe in reply to SlowDragon

Hi,When I referred the below to my endo, she mentioned that this kind of dose is for a person has had his thyroid remove:

"Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease."

SlowDragon profile image
SlowDragonAdministrator in reply to gedebe

As soon as we start on levothyroxine feedback mechanism is broken

Pituitary “sees” the levothyroxine, TSH drops…..your own thyroid stops producing thyroid hormones or significantly reduces output

Guidelines are quite clear

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Most endocrinologist are diabetes specialists and don’t understand this

As there’s question mark over pituitary, TSH is definitely unreliable

gedebe profile image
gedebe in reply to SlowDragon

Levo aside, what can be the recommendations for supplement?

Turner50 profile image
Turner50

First of all, generic thyroid meds aren't tolerated well by some, including me. My pharmacy filled mine the last time with levothyroxine, and I thought I would at least try it. Big mistake. My doctor then gave me samples of Tirosint (I had been taking Synthroid), and I began to feel better.

As for ranges, many people report feeling their best when free T4 is around midrange and free T3 is in upper normal range. For more information, stopthethyroidmadness.com is a great resource.

Meanbeannyc profile image
Meanbeannyc in reply to Turner50

STTM is such garbage. Why does anyone use that site. They claim more is better. They claim Supraphysiological doses of TRH is better and that if you’re anxious and tachycardic then it’s not being overdosed, it’s your iron !

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