Please help levothyroxine making me way more tired after taking it I know it’s the medicine.. why?

[Carlymich]

Hi everyone. I have a pitutary tumor for years and just a few months ago I was diagnosed with hypothyrodism hashimotos. My biggest symptom was fatigue. I just started taking t4 medication tirosint (levothyroxine) and I noticed I feel extremely tired after taking the medication way more then before I take it. I know it’s the medication because I feel fine before and once I take it 30 minutes after and more into the night I get so fatigued I can barley lift my head up. I read somewhere here that the lower dose the more fatigue you feel.. I don’t know if it’s central hypothyrodism since I have the antibodies but why do I feel so tired headache and dizzy after taking my t4 medication something is going on .. I’m wondering if anyone of you know.. when I don’t take it I don’t feel like THIS. I’m on 13mcg lowest dose of tirosint now. thank you so much.

[Lora7again]

That is a very low dose and usually you are started on 50mcg and then a blood test after 6 weeks and a increase of 25mcg.

Do you have any blood results to share with us? We need the TSH, T4 and T3 and any vitamin levels if you have them like B12, Iron and Ferritin, Vitamin D and Folate. All your vitamins needs to be optimal for the Levothyroxine to work. Just to add you can feel worse before you start to feel better because the pituitary gland senses there is thyroxine in your system and stops stimulating your thyroid so if you have pituitary gland tumour that could be adding to this. I think you need further investigations imho.

[Carlymich in reply to Lora7again]

Thank you so much for your response!! I will get back to you tomorrow with all of the numbers for those tests. Doctor still needs to test iron she said iron is ferritan no I need iron specifically. I went lower because I had heart palpitations but the lower i go the more fatigued I feel for some reason but higher I get heart palpitations so I feel like I can’t win :/ xx thanks again

[adin]

yes, that's what happened me too after each dose increase but in time it will disappear until the adrenal glands adjust and the dose is correct.

[Carlymich in reply to adin]

Adreneal glands ? What does adrenal have to do with this? Thank you so much for your response xx

[greygoose]

I don’t know if it’s central hypothyrodism since I have the antibodies

Central Hypo doesn't have antibodies. Central Hypo is a problem with the pituitary or the hypothalamus.

Over-range antibodies indicated Hashi's.

But, I don't think either of them would have anything to do with your present problem.

I read somewhere here that the lower dose the more fatigue you feel..

Well, yes and no. That's a bit garbled, too. Thing is, taking any dose of thyroid hormone replacement will stop your thyroid's natural production of hormone. But, if the dose is too low, it won't be enough to replace it.

You are on a very low dose, so it certainly won't be enough to replace it. So, what it has done, in effect, is to make you more hypo.

I cannot understand why a doctor would put a patient on such a low dose. It's totally counter-productive. I think you should tell your doctor that you want an increase to 50 mcg, and you want it now! He is being totally unprofessional.

[Carlymich in reply to greygoose]

Well it’s because when I go up higher doses I get really bad heart palpitations but hopefully that will subside and it’s just my body getting used to the medication .. don’t know if heart palpitations is a common symptom of hypothyroidism? But even when I took 25mcg I felt so fatigued after taking it so I just don’t know what to do. Thank you so much for your response ! ❤️

[greygoose in reply to Carlymich]

Palps are a very common symptom of hypo, yes. And, even 25 mcg is too low. The starting dose should be 50 mcg, with a retest after six weeks and an increase of 25 mcg.

[SlowDragon Administrator]

Levothyroxine doesn’t “top up “ failing thyroid, it replaces it. So it’s important to start on high enough dose levothyroxine and increase dose up slowly in 25mcg steps until on full replacement dose

Taking too low a dose frequently makes symptoms worse

With Hashimoto’s we frequently have very low Vitamin levels

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

Bloods should be retested 6-8 weeks after each dose increase

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

[Carlymich in reply to SlowDragon]

So my ferritan is a 34.. don’t know if that’s low but my endro said it was fine don’t know if I trust that though ... should I be taking supplements for this? I got a supplement for b12. My folate was high 20 ng/ml and my vitiman d was fine . My reverse t3 is a 18 tsh was a 6 which is weird how it went from 14 to a 6 in 2 weeks of synthyroid.. (I switched from synthyroid to tirosint) don’t know if medication can make the tsh go down that fast ..

[SlowDragon Administrator in reply to Carlymich]

Need the range on ferritin

What was vitamin D result?

Aim of levothyroxine is to bring TSH down, definitely under 2, many people will have TSH well under 1 when correctly medicated

Most important results are Ft3, (at least 50% through range) And Ft4 (at least 60-70% through range...may need to be higher)

Typically patients need somewhere around 1.6mcg of levothyroxine per kilo of your weight

Dose has to be increased slowly upwards in 25mcg steps (or smaller)

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

[e-mail]

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.

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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[Carlymich in reply to SlowDragon]

Ferritan is 34 ng/ml thanks for all that info!

[SlowDragon Administrator in reply to Carlymich]

Yes but what are the ranges (figures in brackets after each result)

Eg

Ferritin 34 (15-150)

[Carlymich in reply to SlowDragon]

Yes those are the ranges 15-150

[SlowDragon Administrator in reply to Carlymich]

So on the low side

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

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

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.

[Carlymich in reply to SlowDragon]

Wondering if I should take a supplement

[Carlymich in reply to SlowDragon]

Please help I’m having horrible heart palpitations my heart is beating so fast and I can’t even take a nap... is this from being on too high of a dose (25mcg of tirosint) or is it just my body adjusting and getting used to the medication and will subside? I’ve been on this for a week. I know with tirosint you need a lower dose because it absorbs quicker I was on synthyroid before for a little 25mcg so I’m wondering if I need to start at a lower dose but the more lower dose I have the more tired I get so I feel like I can’t win. 😟 thank you

[SlowDragon Administrator in reply to Carlymich]

High heart rate can be low Ft3

You may need beta blocker to slow heart rate while dose levothyroxine is increased

See your doctor to discuss and get thyroid levels tested

[Carlymich in reply to SlowDragon]

My ft3 is normal

[Carlymich in reply to SlowDragon]

It’s probably just the medication..

[SlowDragon Administrator in reply to Carlymich]

You have High TSH and Hashimoto’s so are going to need to take some form of replacement thyroid medication

You might find my profile info interesting/ helpful

[Jazzw]

I don’t think it could be having that effect, Carlymich. Such a tiny tiny dose of levothyroxine will barely be registering in your system.

I suspect you’re feeling so tired because you’re woefully undermedicated.

What were your blood test results when you were diagnosed with hypothyroidism? How long ago did you start taking levothyroxine?

I think what might have happened is that over the years your body has adapted as best it could to having such a low level of thyroid hormones in your system. But when we’re left undermedicated, we develop stomach absorption problems and develop a whole range of vitamin and mineral deficiencies, making things even worse.

[Vikaa]

I’ve had palpitations when my folate was low, supplementing fixed that within couple of days x

[Carlymich in reply to Vikaa]

My folate is high ferritan is to the Lower side D:

[Vikaa in reply to Carlymich]

My ferritin is also on the lower side however my iron panel is optimal. It’s best to have your actual iron levels tested if you consider supplementing with iron to bring your ferritin up, it may be unnecessary if iron level is good. I have just started on 50mcg levo two weeks ago and I’ve had palpitations the first day I took it, then it settled. How long have you stayed on your initial dose before lowering it? Do you take any supplements?

[Carlymich in reply to Vikaa]

Are you on generic or brand?? Did you feel fatigued before starting medication? Hopefully tirosint (levothyroxine) makes me have more energy.. people say add t3 or get on natural but I’m giving this a shot first hopefully it will help with my symptoms !

[Vikaa in reply to Carlymich]

I’m on Eltroxin. I felt horrible before starting, fatigue and heavy periods with spotting before periods were my main symptoms, so far I don’t see much noticeable difference fatigue wise but I didn’t have spotting this cycle so I guess it starts working already. Have you tested your T3? if your body converts T4 to T3 well you should be fine on T4 alone 💖

[Catou142 in reply to Vikaa]

But how do you explain that the palpitations started right after taking the Levo?

[Vikaa in reply to Catou142]

Because some vitamin and mineral deficiencies sometimes can cause unpleasant side effects from levo.