I had an under active thyroid, been taking 50mg... - Thyroid UK

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I had an under active thyroid, been taking 50mg levothyroxine for 1 yr, 3 blood tests since all show perfect levels but I can’t lose weight.

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Even though my blood tests show that I’m on the correct dose of Levothyroxine since having a hemi-thyroidectomy, I cannot shift the pounds, even though I am eating very few calories every day. (Everything that I do eat throughout the day is nutritious, small portions, and I have no junk food or “empty calories “).

Has anyone else experienced this problem whilst taking Levothyroxine?

Any advice would be greatly appreciated. Many thanks.

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24 Replies
greygoose profile image
greygoose

Who said they were the perfect levels? Your doctor? A doctor wouldn't know perfection if it got up and punched him in the eye. Anyway, it's not about blood test levels, it's about how you feel, whether your symptoms are gone. So if you still can't lose weight, you're probably not on the right dose.

Do you have the actual numbers: results and ranges? If so, post them here and let's have a look. :)

Alternatively profile image
Alternatively in reply togreygoose

Thankyou for replying to me. I will get the actual figures from my blood test from my gp and post them. It’s very kind of you to offer to have a look at them for me. Apart from the weight issue, I’m feeling well.

greygoose profile image
greygoose in reply toAlternatively

Don't ask your doctor, he'd probably rather you didn't know! Especially as he's pronounced them 'perfect'! Ask the receptionist for a print-out - it's your legal right to have one, but they will never just give it to you.

DippyDame profile image
DippyDame

Welcome!

Levothyroxine is not a weight loss drug but inability to lose weight can be a sign of undermedication.

Since your dose is 50mcg, a starter dose, it is almost certain that you need an increase.

You should have been retested after 6 weeks and your dose adjusted then

if you were on the correct dose your symptoms would be resolved.

Do you have any symptoms on this list? Tick them off and show your GP

Symptoms are an important part of diagnoses.

thyroiduk.org/signs-and-sym...

Medics have poor knowledge of thyroid disease and of analysing lab results.....that's why over 135,000 concerned patients have arrived here

i guess TSH is being used to monitor your medication which once medication is iniated is an unreliable marker

thyroidpatients.ca/2021/07/...

FT3 and FT4 are the important labs and your results should sit roughly 75% through the reference range

Essential nutrients ( listed below) must be optimal.

A full thyroid test....TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg

Many of us test privately ...

thyroiduk.org/testing/our-v...

thyroiduk.org/testing/priva...

Very low calorie intake can impair T4 to T3 conversion and if T3 is low ill health follows

Thyroid weight gain is not like that resulting from overeating/ poor diet it relates to metabolism.

If T3 is low metabolism slows down and weight gain occurs.

Oxygen saturation may be low because one role of thyroid hormones is to promote oxygen delivery to tissues. So, if you have low thyroid hormone levels (hypothyroidism), your tissues may have low oxygen levels causing fatigue.

You need to have a full thyroid test to evaluate your thyroid hormone status, ask your GP or test privately.

You are legally entitled to request copies of test results from your surgery. Suggest you do this and post them.

Who told you your "results are perfect"?

Post any results you receive and members will help.

With correct medication your health should improve

Good luck

Alternatively profile image
Alternatively in reply toDippyDame

Thankyou so much for your detailed reply and for the links. My GP was very happy with the results of all my blood tests and although I told her I couldn’t lose weight, she wouldn’t give me an increased prescription for LEVO. I am not overweight, but would like to just lose 3 or 4lbs. It feels very awkward to me to tell my gp that she is wrong, I can’t imagine that will go down well🥺

I will post my results for you to have a look at next week.

TiggerMe profile image
TiggerMeAmbassador in reply toAlternatively

I has come to this for most of us here so don't be too concerned about standing up to your GP, who probably knows far less about your condition than you could imagine! They might well learn a great deal from you and treat others better in the future 😏

Honestly once you've questioned them once and found them lacking it becomes a bit of a mission 🤗

Sparklingsunshine profile image
Sparklingsunshine in reply toAlternatively

When you know how little time doctors spend on learning about the thyroid in Med school you will no longer be so concerned about asking awkward questions. Thyroid conditions are notoriously poorly treated, not just here but worldwide.

Like many of us you probably grew up with the idea that doctors know best and it can be hard and actually quite scary when you realise that isnt always the case.

However if you learn as much as you can about your condition you grow in confidence and knowledge and become an expert patient 😁

SlowDragon profile image
SlowDragonAdministrator

Very very unlikely your levels are adequate

Please add actual results

50mcg is only standard STARTER dose

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

SlowDragon profile image
SlowDragonAdministrator

guidelines on dose levothyroxine by weight

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 near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

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).

Alternatively profile image
Alternatively in reply toSlowDragon

Thankyou so much for all that information! And for the links too. So kind of you to take the time to reply. After I had the left side of my thyroid removed , all my blood tests afterwards kept showing a slightly lower than range thyroid function. Before the op there was no problem with my levels. So I didn’t think I was Autoimmune?

My last bloodtest was three weeks ago at 8.30am and I had taken my Levothyroxine just 6 hours before.

SlowDragon profile image
SlowDragonAdministrator in reply toAlternatively

So what were results

Ft4 would be false high as last dose only 6 hours before test

Get full thyroid including antibodies and vitamin testing done

as you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Sparklingsunshine profile image
Sparklingsunshine

As Greygoose so succintly put it, there is no such thing as a perfect blood test when on Levo. What your doctor actually means is your TSH is somewhere in the range and that is good enough. Have they even tested your FT4/FT3 levels? Just testing TSH is pointless.

Also 50mcg is just the starter dose and unlikely to be enough. Far too many of us were started on Levothyroxine, tested after a few weeks and the doctor announced hurrah, your TSH is now in range and we were "parked" on 50mcg. It happened to me as well.

If you are experiencing symptoms like weight gain then its likely you need an increase to 75mcg.

Alternatively profile image
Alternatively in reply toSparklingsunshine

Yes, I think I do need 75mcg but my gp says I don’t. I have asked her for this and she refused , so where do I go from here?

TiggerMe profile image
TiggerMeAmbassador in reply toAlternatively

Once you have results from a full thyroid panel and we can see where you are with your free T3 & 4 we'll be able to advise, I find it rather helps to say you have received advice and guidance from Thyroid UK and also mention the NICE guidelines 😏

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Alternatively in reply toTiggerMe

Thankyou, I Will ask for my results and post them here during the coming week. I would very much appreciate your opinions. That’s good advice to mention Thyroid UK when having discussions with my GP.

Can I ask please , What do the NICE guidelines say in relation to this? Or maybe there is a link you can send me if it’s easier?

TiggerMe profile image
TiggerMeAmbassador in reply toAlternatively

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

Alternatively profile image
Alternatively in reply toTiggerMe

Many thanks, will read and learn.

Sparklingsunshine profile image
Sparklingsunshine in reply toAlternatively

As Eeyore says try quoting or printing off NICE guidelines or try a different GP. I've found some are more flexible than others.

Anthea55 profile image
Anthea55

Note also that TSH levels vary during the day. That's why it's recommended that testing is done by 9am. You can't compare a test done at (say) 4pm with one done at 9am. If your original test was in the afternoon you may not have been diagnosed with an underactive thyroid.

Unfortunately doctors and nurses and receptionists don't know about timing of tests and will assure you that it doesn't matter - it does!

Sparklingsunshine profile image
Sparklingsunshine in reply toAnthea55

Doctors and some pharmacists also insist Levo brands don't matter and they are all the same, hence why many patients end up with different brands each time they get a prescription 🤦‍♀️

Anthea55 profile image
Anthea55 in reply toSparklingsunshine

You are so right Sparklingsunshine. I've recently been in hospital. I was told they had Teva, but I never saw any. Accord was dished out, probably because that was what they had on the trolley.

Alternatively profile image
Alternatively in reply toSparklingsunshine

I have always been prescribed with the Accord brand …. is this an ok brand or are there better ones please?

Sparklingsunshine profile image
Sparklingsunshine in reply toAlternatively

Accord is pretty good, its very well tolerated and widely available. Doctors will have you believe all Levo is the same, but although the active ingredient is the same, its the fillers that change.

I always get Accord as a named brand. Some hypo patients can chop and change brands with no ill effects, others need to stick to a specific one.

I didnt get on with Mercury, it contains Acacia powder and made me itch. Many members dont get on with Teva brand, it contains mannitol. Yet if you are lactose free Teva can be very good. There are no good or bad brands, its just whether they suit you or not.

Alternatively profile image
Alternatively in reply toSparklingsunshine

Oh I see now, thankyou for explaining this.

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