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Feeling tired

Dan5795 profile image
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Help please,l feel tired every time l am taking Levo 25mg every day. Since taking this medication l feel cold and my skin is itching. These are my latest thyroid results,

TSH: 3.20(normal range 0.20-4.50)

Serum Free T4 level: 11.2(normal range 7.0-17.0)

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Dan5795
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SeasideSusie profile image
SeasideSusieRemembering

Dan

You are ready for an increase in your dose of Levo.

Maybe re-read replies to your previous post where it was explained to you that 25mcg was too low for a starter dose

healthunlocked.com/thyroidu...

Are these results from a new test? Retesting is generally carried out a couple of months after starting Levo and an increase of 25mcg should be given, retesting again 6-8 weeks later.

The aim of a treated hypo on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges, if that is where you feel well.

Dan5795 profile image
Dan5795 in reply to SeasideSusie

l have always felt ok with my TSH at 4.2. Since taking Levo my Tsh has dropped, but l just feel drained.

SlowDragon profile image
SlowDragonAdministrator in reply to Dan5795

Levothyroxine doesn’t “top up “ failing thyroid…it replaces it

Standard starter dose of levothyroxine is 50mcg

Dose is increased slowly upwards in 25mcg steps until TSH is around 1 and Ft4 and Ft3 are at least 50-60% through range

Essential to regularly retest vitamin D, folate, ferritin and B12

Being under medicated for thyroid and still hypothyroid leads to low vitamin levels, high cholesterol, and poor kidney function

Just testing TSH and Ft4 is completely inadequate

SlowDragon profile image
SlowDragonAdministrator

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

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

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

SlowDragon profile image
SlowDragonAdministrator

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

FT4: 11.2 pmol/l (Range 7 - 17)

Ft4 only 42.00%

Most people when adequately treated on just levothyroxine will have Ft4 at least 60-70% through range

Dan5795 profile image
Dan5795 in reply to SlowDragon

the test was done between 9 am and 10 am. l will try to ask my doctor to up my dose.

SlowDragon profile image
SlowDragonAdministrator in reply to Dan5795

You can also use these guidelines to help push for next 25mcg dose increase in levothyroxine

Bloods should be retested 6-8 weeks later

Request vitamin D, folate, ferritin and B12 are tested now and you need thyroid antibodies tested for autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease

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

CaptainBeOS profile image
CaptainBeOS

Hi Dan,

In my experience it's not how much but when.

The reason you feel worse on 25mgc levo is because it has pushed your TSH down resulting in your own thyroid hormone production being suppressed. But that's only half the story...

Your own thyroid relies on the TSH feedback to stimulate production of T4 and T3. Your thyroid produces mostly T4 (inactive hormone) , but also a small amount of T3 (the active hormone). The active T3 hormone comes from two places: your thyroid and from certain organs capable of converting T4 to T3. In fact only 20% or so comes from your thyroid, which unfortunately means that run of the mill endocrinologists don't consider it to be important. Not true: that tiny bit is essential for your well being. It is produced in a very important day/night cycle (circadian rhythm) that gives you more T3 at night than during the day. This cycle works with your body to keep all your other hormones in check. Without it you start to feel very ill. People who have a healthy T3 cycle have been shown to live longer. For more information see this resource:

thyroidpatients.ca/2020/07/...

As SlowDragon says, adding synthetic thyroid hormone doesn't top up your thyroid hormone, it replaces it:

The presence of the additional T4 in your blood stream has suppressed your TSH to a level that has switched off or dampened that 20% of T3 that comes from your own thyroid. You would most likely have been advised to take the Levo in the morning since it is absorbed better on an empty stomach. This however puts your peak serum T4 levels in the evening when your TSH should be on the rise triggering a flood of T3 from your thyroid. Instead your TSH is being suppressed and that flood is not happening.

Try taking your Levo in the evening. This would put the peak serum T4 in the morning when your TSH should be naturally dropping. With any luck this will restore your T3 cycle. Obviously if you work nights the whole story is flipped. So for day night you should really read Waking/Sleeping.

Also you need to get fT3 levels checked. TSH and fT4 can vary wildly from individual to individual and say diddly squit about fT3. It might be that your fT3 was fine without the Levo. What was the reason they put you on it? I've looked through your other post and not found a real reason.

Hope this helps

Dan5795 profile image
Dan5795 in reply to CaptainBeOS

Thanks for the great information l am very impressed by your knowledge. The doctor put me on Levo because my TSH was high and l had symptoms. But the honest truth l am asking myself now is is there something else causing my thyroid to be underactive. My iron levels dropped from 84 to 72 and my b12 is below 500. l was also low on vitamin d (19). The Doctor gave me a loading dose for my vitamin d.

SlowDragon profile image
SlowDragonAdministrator in reply to Dan5795

Low vitamin levels are directly linked to being hypothyroid

When hypothyroid we frequently develop low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

So how much vitamin D have you been prescribed

Vitamin D levels should be retested after completing the prescription

You will need ongoing maintenance dose vitamin D everyday

Trial and error what dose each person needs

Aiming for vitamin D at least around 80nmol minimum

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

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,

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator in reply to Dan5795

My iron levels dropped from 84 to 72

What’s the range on ferritin result

Look at increasing iron rich foods in diet

Are you vegetarian or vegan?

and my b12 is below 500

How low is B12

Have you had folate levels tested

Dan5795 profile image
Dan5795 in reply to SlowDragon

Ferritin 73ug/l(normal range 15-200)Vitamin b12 430ng/l(normal range 145-910).

Sorry, l don't have the Folate results, the Doctor told me they are ok. l am not vegetarian l eat meat every day.

CaptainBeOS profile image
CaptainBeOS in reply to Dan5795

In the olden days (many decades ago) of thyroid treatment doctors asked "how do you feel" to find out whether they had thyroid medication right. None of this reliance on labs. They also used NDT (Natural desiccated thyroid), not Levo.

A lot of people respond badly to Levo and end up on this forum or on "stop the thyroid madness" (STTM) because apart from the Circadian rhythm thing (which is not well known), there are other mechanisms that get triggered that are of no help to how you feel if you increase fT4 without increasing fT3 to match.

I personally like the explanation laid down in this article thyroidpatients.ca/2019/11/...

Others prefer the RT3 explanation laid down by STTM.

The summary is that increasing fT4 alone can cause certain tissues that are incapable of converting T4 to T3 to go hypo while others that can convert go hyper. Those tissues that can't include your brain and heart. Those that can include your liver and kidneys. So on Levo alone people commonly experience brain fog, heart palpitations and muscle cramps. Something I have the pleasure of knowing intimately.

As with all these things people respond differently and most in fact do reasonably well on Levo alone.

My personal experience is that I have to increase T3 with T4 to avoid this situation. So what I instinctively want to say is try a little T3, but unfortunately the chances of getting T3 (Liothyronine) on the NHS is near to zero and it costs a bomb privately.

So the compromise is to try taking what you already have in the evening and see if that's enough to nudge things back into line.

Also try every other suggestion on this forum too. Navigating thyroid hormones is a real suck it and see experience.

Incidentally, if you do look at T3, NDT is more reasonably priced than T3, but again only available privately except in one or two very lucky NHS authorities (not mine). NDT contains 25% T3, which means that you can achieve the increase in T3 along side T4. People taking it swear by it... and as ever... others hate it.

Another thing to bear in mind is this:

TH levels vary wildly from person to person. There is a "norm", but just look at how big the reference ranges are. TSH varies by a magnitude of 20x from the lower end to top end. More to this it varies in individuals through out the day and from season to season. If you took your blood test in the evening your TSH could easily be double the level it is in the morning.

Your TSH was just in range. So your thyroid might have been functioning perfectly fine and this happens to be the right level for you. The same symptoms that point to mild hypothyroidism also point to just about every disease and non disease on the planet.

Back in 2017, when I had a thyroid and when I first felt "fatigue" had become a real problem, my TH's were tested. TSH was 2.05 and fT4 was 13.8. Some would say perfectly normal - my doctor did. Others would say a little hypo... but nothing worth trying to fix.

I lived with non descript symptoms for another three years before anyone had an inkling what was going on.

It turns out that I had two low grade cancers: Thyroid cancer (Papilliary carcinoma) and Follicular lymphoma. Such a rare combination... one in a million... and neiher particularly life threatening.

Thyroid cancer interestingly does not affect thyroid function. It is completely silent and they only discovered it because I asked them to investigate lumpy lymph nodes on my neck. As it turns out my thyroid function was just fine. The fatigue was more likely caused by the Follicular lymphoma (which they took another year to diagnose) or Non alcoholic fatty liver disease (NAFLD - from a little too much rich food) or the fact that I have 6 children (duh!).

Not that it makes any difference now, as the dominant problem is now having no thyroid. God I wish I had kept mine a few more years until the kids had grown up some more!

Still I have gone to the effort of fixing the NAFLD by reducing meat and alcohol and going 80% plant based.

Non alcoholic fatty liver disease is one to look out for: 1/3 of people have it. If your BMI is a little high, then it's very likely you do. It causes fatigue all by itself.

A little tale of woe, but the point is to remember to look outside of the box and work on the whole you. It's definitely okay to go back to not taking Levo if that is better for you.

serenfach profile image
serenfach

Dont try and ask your GP to up your dose - demand it! Your body is giving every signal that it can that you are underdosed, so listen to it!

If the GP says you are in range, tell him the range if for a healthy thyroid and yours is not healthy and why does he want to keep you ill? Take someone with you who can butt in and say you are a shadow of your former self.

I know it is a battle when you are feeling so rough, but, believe me, it is worth fighting tooth and nail - been there, done that! When you get the correct dose, it is lovely to feel like you are you again. So demand!

Dan5795 profile image
Dan5795 in reply to serenfach

I will ring my doctor to arrange a appointment, fingers crossed because they never listen. Last time she told me l was stressed,l told her lm not stressed but she didn't believe me.

SlowDragon profile image
SlowDragonAdministrator in reply to Dan5795

Print out the guidelines I gave you

Be ready to quote them

Insist on 25mcg dose increase and blood test in 6-8 weeks

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Approx how much do you weigh in kilo

Meanwhile working on improving low vitamin levels

B12 and folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

Both available online

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

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

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

healthunlocked.com/thyroidu...

Dan5795 profile image
Dan5795 in reply to SlowDragon

Thank you, l will approach my doctor with the information you have provided.

Jbrooke profile image
Jbrooke

It appears as though your meds are not high enough. Typically, 25 mg, is just a STARTING DOSE. That being said, you probably need a medication increase. Check with your doctor.

helvella profile image
helvellaAdministratorThyroid UK in reply to Jbrooke

Jbrooke,

Afraid both you and the original poster have posted "25mg".

Levothyroxine (and Liothyronine) are usually quoted in micrograms (mcg) not milligrams (mg). That should read 25 micrograms.

Dan5795 profile image
Dan5795 in reply to Jbrooke

The doctor told me to get on with life, my TSH numbers are ok according to the doctor . To be honest, l feel worse than before l started Levo.

tattybogle profile image
tattybogle in reply to Dan5795

Hi Dan5795.. you will probably continue to feel unwell until you can get a GP to increase your dose appropriately (or frankly, just do it yourself for 6 weeks , and then show GP the improvement in your symptoms , then get them to retest bloods on the higher dose ~ as long as TSH /fT4 result are still in range they will have no excuse to say you can't continue on 50mcg )

If you're going to replace thyroid hormones at all , you need to replace them with ENOUGH .... other wise you will just end up worse off than before you started taking any. The thyroid reduces it's own production of T4/T3 in response to the 25mcg Levo you added... you need to add enough to overcome this before you can end up with more than you started with . If you don't add enough you can end up with less than you started with.

I suggest you :

Write a letter asking for a different GP to give a second opinion on your Levo dose , and include the 3 references below in your letter. They are advice written FOR NHS GP's in their own magazines and guidelines.

Write that you would like a 'trial' increase to 50mcg Levo to see if it improves your symptoms.

Write that you do not think an increase of 25mcg will take your TSH below range, since it is still over 3 on 25mcg Levo.

Write that if a trial increase is not offered , you expect to receive a written reason for their refusal.

References :

gp-update.co.uk/files/docs/...

"The goal of treatment is to make the patient feel better and this tends to correspond with a TSH in the lower half of the reference range (0.4–2.5 mU/l).

If a patient feels perfectly well with TSH between 2.5 and 5 mU/l there is no need to adjust the dosage" .

gponline.com/endocrinology-...

"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L." Written for GP's by "Dr Iqbal is a specialist registrar in endocrinology and Dr Krishnan is a specialist registrar in cardiology, Liverpool".

and this one from the actual NHS guidelines written for GP's treating hypothyroidism:

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

"1.4 Follow-up and monitoring of primary hypothyroidism

Tests for follow-up and monitoring of primary hypothyroidism

1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis."

Dan5795 profile image
Dan5795 in reply to tattybogle

Thank you so much, this forum is very helpful and it helps to educate. The doctor l saw last week was very rude to the extent he couldn't even pronounce my name and when l told him my name he just said it's not how he will pronounce it. Anyway, he told me to get more blood tests and he sent me back home. I had a blood test less than a month ago.

tattybogle profile image
tattybogle in reply to Dan5795

very tempting next time you see him to say "that's ok , i have decided to pronounce your name "Dr Bar Steward" ... best not though.

OK ....Next time you get blood tested:

1) MAKE SURE that test is as EARLY as possible in the morning , if they say "we've only got an appointment at 1pm" say " sorry , i have work commitments that mean i can't get to appointments after 10am , can you find me anything earlier the following week .. i don't mind waiting a week or two more, its not an urgent test"

2) DON'T take that morning's Levo dose until AFTER the blood test. (Hide the packet from yourself the night before, so you don't take it on 'autopilot' )

These will mean the TSH is at the high point and the fT4 is at the low point ..which will help with getting a dose increase.

Dan5795 profile image
Dan5795 in reply to tattybogle

l strongly agree with you on those tactics, because sometimes you have to look after number one. Well well, my first thyroid test was done after 2 pm and it came back with a reading of 8(TSH). To be honest, l am doubting if l should be treated for thyroid problems. The doctor gave me a loading dose of vitamin d and my TSH went to normal around 4,l have always felt ok with a TSH in the upper 3,s to 4. But my third test came back just above 4 just slightly.

tattybogle profile image
tattybogle in reply to Dan5795

Well there's only ever going to be one way to find the answer to that question ,and that is to stop taking levo for several months , to allow everything to settle ,and then see if you really are OK without it , or not .

But ,, personally .. i'd save that experiment until i had an established and accepted prescription of 50mcg Levo set up with the GP and i knew they were going to leave me alone for a year... and then i'd try going off it myself without telling them what i was doing. ( well 'I' wouldn't ,cos i am not in any doubt that i needed it, and i know going off it for months will make me very very unwell)

If you loose your hypothyroidism 'diagnosis' now by saying you don't think you should be on it at all .. they can sometimes be complete bar stewards about giving it you back again if you have borderline TFT's.... even if you discover you feel much worse without any Levo.

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