Very bizarre results : I’ve been on 50ug levo... - Thyroid UK

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Very bizarre results

Lenaa profile image
34 Replies

I’ve been on 50ug levo since December and my latest results are even lower than on 25ug. How is that possible? I will add the older results in comments for comparison.

Waiting for antibodies test to come back from my GP. Last time he said my TPO were too low to be hashimoto. Sounds like nonsense to me.

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Lenaa profile image
Lenaa
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34 Replies
Lenaa profile image
Lenaa

Old results when on 25ug

TSH 0.27 - 4.2 R

1.66

mIU/L

FREE T3

3.1 - 6.8 R

4.18

pmol/L

FREE THYROXINE

12 - 22 R

14.6

pmol/L

Autoimmunity

THYROGLOBULIN ANTIBODIES

< 115 R

10.9

kIU/L

THYROID PEROXIDASE ANTIBODIES

< 34 R

39.2

greygoose profile image
greygoose

Were both tests done at the same time of day, fasting and leaving a gap of 24 hours between the last dose of levo and the blood draw?

More than likely that you do have Hashi's, with that result, so that could account for the difference in results. Levels do tend to jump around with Hashi's. :)

Lenaa profile image
Lenaa in reply togreygoose

Yes indeed. Early morning and no levo

greygoose profile image
greygoose in reply toLenaa

Then it probably is the Hashi's causing the discrepancies. :)

SlowDragon profile image
SlowDragonAdministrator

levothyroxine doesn’t top up your own thyroid output , it replaces it

50mcg is only a starter dose

Your very low Ft4 and Ft3 show you need 25mcg dose increase

The problem is GP will only look at low a TSH and likely refuse you an increase

You probably have some degree of central hypothyroidism....where pituitary is affected and TSH unresponsive

Your lowTSH has switched your own thyroid output off...but 50mcg levothyroxine is too small a replacement dose

Post on how to push for dose increase

healthunlocked.com/thyroidu...

What are vitamin D, folate, ferritin and B12 levels?

Lenaa profile image
Lenaa in reply toSlowDragon

But what I do to understand is why my results are even lower than on 25ug?

Yes all other tests are fine

Lenaa profile image
Lenaa in reply toSlowDragon

Why is my TSH low if output was switched off? If too few thyroid hormones, wouldn’t TSH go up to try and make more?

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

That’s what should happen...but in central hypothyroidism it’s the pituitary not working (where TSH message is made)

If Ft4 and Ft3 are low, TSH should rise....but many patients find a TSH doesn’t respond correctly, especially if on too low a dose of levothyroxine

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Link about central hypothyroidism

endocrinologyadvisor.com/ho...

Lenaa profile image
Lenaa in reply toSlowDragon

That document says if TSH normal, diagnosis excluded 😳

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

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.

Monitoring replacement treatment

If untreated hypothyroidism has been present for a long time, hyperplasia of the TSH-producing cells in the pituitary can result in it taking 3–6 months for the TSH level to return to the reference range, even if full replacement dose levothyroxine is started straight away.

helvella profile image
helvellaAdministrator in reply toLenaa

It doesn't (or at least, shouldn't) mean what it says!

Your TSH is NOT normal for your FT4/FT3 numbers.

Only if you simply take any TSH result in the reference range as being "normal" utterly regardless thyroid hormone results and clinical presentation could your combination of results be regarded as normal.

SlowDragon profile image
SlowDragonAdministrator

Your very first post 9 months ago ...

healthunlocked.com/thyroidu...

SeasideSusie gave lots of info on Central hypothyroidism

TSH is unreliable at best of times, once on levothyroxine, but with central hypothyroidism it definitely needs ignoring.....dosing should be by Ft4 and Ft3 and also by your weight ....dose slowly increases in 25mcg steps up

Approximate full replacement dose is likely to be 1.6mcg per kilo of your weight ...some People need a bit more...some a bit less

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

healthunlocked.com/thyroidu...

Lenaa profile image
Lenaa

Yes I know and CH was the initial diagnosis I was fighting with my GP for. But things became complicated once I saw not long ago that my TPO are raised. My GP said this isn't hashi as they are not high enough but to my mind, if one is healthy, they would not have any antibodies and certainly not over the range. So I don't know what is more applicable now central H or Hashi... Still, I cannot understand why my results are worse on 50 than they were on 25. If 25 replaced my own hormones with its dose and now my hormones are replaced with a higher dose, even tho not optimal, I still shouldn't be worse than on 25. This is what's odd to me. A lady above said fluctuations like this can happen in hashi.

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

It’s extremely common...once we start on levothyroxine, body realises what it’s missing....dose needs increasing up as fast as tolerated

Bloods should be retested 6-8 weeks after each dose increase and unless Ft4 is right at top of range, levothyroxine dose increased up after each test

Taking your own weight in kilo x 1.6 will give approx dose of levothyroxine you are likely to end up on

Lenaa profile image
Lenaa in reply toSlowDragon

It won't be a case of I was wrong to take levo in the first place? Maybe I've given myself hypothyroidism when I didn't have one?

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

No...you clearly had very low Ft4 and Ft3

And raised TPO antibodies

Lenaa profile image
Lenaa in reply toSlowDragon

i never had raised antibodies until just recently. several months after i started levo.

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

20% of Hashimoto's patients never have raised antibodies

Have you had ultrasound scan of thyroid?

healthunlocked.com/thyroidu...

Lenaa profile image
Lenaa in reply toSlowDragon

I haven’t. I’m sure GP won’t agree to one as in his opinion I don’t have hashi pffffff

Lenaa profile image
Lenaa in reply toSlowDragon

I also have to clear my throat all the time!

Lenaa profile image
Lenaa in reply toSlowDragon

Someone just said to me these new results would be due to increased rt3 because my body doesn’t want to increase metabolism. What do you think?

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Highly unlikely...your Ft4 is extremely low ...so you don’t have hardly any thyroid hormone to make RT3 with

You just need a 25mcg increase in dose of levothyroxine and bloods retest6-8 weeks later

This slow steady increase repeats until Ft4 is in top third of range and Ft3 at least over half way through range

Levothyroxine doesn’t top up your own thyroid output, it replaces it ....that’s why we all eventually need roughly same dose of 1.6mcg per kilo of your weight

Even if have to start slowly and increase slowly

Lenaa profile image
Lenaa in reply toSlowDragon

It worked. GP went straight from 50 to 100. I’ve actually been taking 75 secretly since those results. I assume it’s safe to just go straight to 100 since I was so low just two weeks ago

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

See how you go...should be fine

Levothyroxine should always be taken 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 effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

healio.com/endocrinology/th...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Get bloods retested 6-8 weeks after each dose increase

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, best not mentioned to GP or phlebotomist)

Suggest you retest vitamins too at next blood test if possible

Lenaa profile image
Lenaa in reply toSlowDragon

So I’ve been on 75 for three weeks (since 10th March) and on 100 since 19th March. Last few days my hair loss has increased massively, my energy decreased, I feel even colder than before and I keep gaining weight in spite of a calorie controlled diet and am bloated esp in the face like a puffer fish. I’m not deficient in anything. A little worried

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

You may have increased too quickly....it may be better to increase more slowly

Ideally you would retest after 6-8 weeks on 75mcg

Lenaa profile image
Lenaa in reply toSlowDragon

But the GP article said it’s ok to go straight up to optimal dose. So what shall i do now? Go back down to 75 or stick with it? Or could this be reverse T3 going up?

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Yes,I know they recommend increasing up from 50-100mcg ....but patients frequently find it too much too soon

If you can bear it....stick on 100mcg and get retested 6-8 weeks later

Are you on same brand of levothyroxine?

Don’t try and diet....we need plenty of good fats and protein.

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Your Ft4 was very low. Reverse T3 is highly unlikely and not worth testing for

It’s common to feel worse when dose levothyroxine is increased, as adrenals struggle to cope with increased metabolism. It should slowly improve

Daily vitamin C may help

Lenaa profile image
Lenaa in reply toSlowDragon

Ok I’ll stick with it. Just quite alarmed at the hair loss.... and the weight gain...

Is it the right thing to do to give my body thyroid hormones if the adrenals can’t cope with it?

It’s going to be impossible to retest soon as everything is shut and the finger prick doesn’t work for me. Tried it and it was pretty awful haha

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Presumably private clinics will still be open for blood testing

Lenaa profile image
Lenaa in reply toSlowDragon

Highly doubt it. Even my doctors surgery is closed. And we’re not meant to travel unless absolutely necessary. Mine isn’t an emergency

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Your very slightly raised antibodies suggests yes you have Hashimoto’s

healthunlocked.com/thyroidu...

We still need to increase levothyroxine up....but Hashimoto’s swings can cause odd results sometimes

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