does 12.5 mcg make much of a difference ? - Thyroid UK

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does 12.5 mcg make much of a difference ?

22 Replies

i decided august 2023 to increase my dose from 75 to 100 on my own based on symptoms and results

TSH

0.27 - 4.2 R

1.17

FREE T3

3.1 - 6.8 R

4.49

FREE THYROXINE

12 - 22 R

16.7

but I became over medicated, symptoms and bloods to confirm.

On 75 I was experiencing quite obvious strong hypothyroid symptoms, I thought there’s no way I won’t need a full 25 increase. But now I’m over medicated. So my question to you all is , is 12.5mcg strong enough to bring someone back up to normal when they are experiencing quite severe hypothyroid symptoms ? I’m thinking I should’ve gone to 88 first.

thanks

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22 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Yes it’s possible. Many people have to very fine tune dose levothyroxine

Can you add most recent results

Is your hypothyroidism autoimmune?

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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 TPO and/or high TG 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)

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)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG 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

in reply to SlowDragon

Yes im autoimmune. I had strongly positive antibodies at diagnosis when I quit smoking, had really awful symptoms back including a burning feeling in my throat when the attack started but they have hovered around 30-50 for about 8 years now and I have non of those symptoms, the inflammation has gone but I’m left with a broken thyroid left to treat.

Yes I will post those results, I do remember them all being out of range if that helps at all.

I am also in the process of correcting vitamin deficiencies although I haven’t had them tested since, so perhaps a combination of correcting those and the increase in levo could’ve caused me to go a bit too far? My ferritin was awful and low vit d. Have been taking supplements for these

SlowDragon profile image
SlowDragonAdministrator in reply to

Do you always get same brand levothyroxine at each prescription

in reply to SlowDragon

When I started 100, I took a different brand

When I took 75, I took two brands , mercury pharma and accord. Neve felt a problem with mixing them , I don’t think I have a choice anyway because of the chemist

SlowDragon profile image
SlowDragonAdministrator in reply to

Teva brand upsets many people

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

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

But for some people (usually if lactose intolerant, Teva is by far the best option)

vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

in reply to SlowDragon

TSH

0.27 - 4.2

0.021

FREE T3

3.1 - 6.8

7.1

FREE THYROXINE

12 - 22 R

24.1

These were my results when overmedicated. Although I felt nowhere near as bad before I increased.

SlowDragon profile image
SlowDragonAdministrator in reply to

So these seem to show you are now on too high a dose

Reducing to 87.5mcg and retesting in 8-10 weeks

Retest vitamin levels too at next test

Approximately how much do you weigh in kilo

Guidelines suggest around 1.6mcg Levo per kilo of your weight per day

Some people need a bit less, some a bit more

SlowDragon profile image
SlowDragonAdministrator

So that would be a bit lower than 100mcg

94.4mcg per day

Or 660mcg per week

87.5mcg daily = 612.5mcg per week

87.5mcg 4 days per week and 100mcg 3 days is 650mcg

in reply to SlowDragon

Thank you so much !!

SlowDragon profile image
SlowDragonAdministrator in reply to

I would initially reduce to

87.5mcg 4 days per week and 100mcg 3 days

A reduction of 50mcg per week

Retest in 8-10 weeks

And go from there

in reply to SlowDragon

I feel really terrible already after just a few days. Did you say mercury pharma make 100 levothyroxine tablets ? I might try taking a different brand of 100 and see if that helps.

SlowDragon profile image
SlowDragonAdministrator in reply to

Have you stayed on same brand as before?

It’s common to initially feel worse reducing dose.

Aerocyc profile image
Aerocyc

Hi Chase13 yes I agree small adjustments are available,I think from my experience it would help.I started with 100mcg 7 years ago, after 6 months increased to 125mcg... recently dropped to 112.5mcg .feel ok.👍

in reply to Aerocyc

Hi Aerocyc

This is good to hear ! I’m glad you’re feeling well 🙂 hopefully I’ll go the same way. Were you overmedicated on 125?

My blood results shot up pretty fast !? Very strange

Aerocyc profile image
Aerocyc in reply to

Hi Chase13,...aha there lies a question 🤣...I personally believe (with help from GP)...as individuals,we understand our bodies far better than GP's.I received a 6 monthly blood test check.9 months ago,my T4 result was out of reference range.Based on the 1 reading,after being stable for around 3 years,this one reading,resulted in reducing my meds by 25mcg.From experience,a smaller reduction may have surficed..but I agreed.Within 6 weeks,the lethargy, returned,so increased by 12.5 mcg.

This has helped,but still have the previous feeling very cold.(Core temps average 35.5'C)..Would like to return to my stable dose,but GP says results are fine,but ignores how I feel.

Ah well,moan over apologies..😉

in reply to Aerocyc

Please don’t apologise , I understand how frustrating it is at times. Id increase it on my own if I were you. But then again better not take my advice, look where I’ve ended up !

Aerocyc profile image
Aerocyc in reply to

Hehehe!... s'funny,in the next hour my Pharmacist is calling to review,my dosage,calls are recorded,may have to be tactful there.As my prescription is free, difficult to change.Keep smiling we are all still getting on with it....take care Cannock Chase 13... ignore the Cannock,a place of significance in Staffordshire.😉👍

helvella profile image
helvellaAdministratorThyroid UK in reply to Aerocyc

Your prescription being "free" should make not one jot of difference.

Should not be more or less difficult to get changed.

Bear in mind, it is only a proportion of those in England who pay for NHS prescriptions. And there is no reason whatsoever for people to accept a wrong or inappropriate prescription just because they are not paying directly out of their pockets.

And, in particular, the fact that myxoedema (hypothyroidism that needs treatment) is a REASON for prescription charge exemption, it is only a very rare individual who ever pays for levothyroxine prescriptions. (E.g. on block and replace for Graves or who has not had the right form issued and signed and sent to the right people.)

Aerocyc profile image
Aerocyc in reply to helvella

Dear Helvella..the issue for me is as much as I would like to increase back to the amount I was stable at...unless the practice doctors agree,I can't demand, I've asked the question,explained my concern,If I'm told everything concerning the blood results,then that seems to be it.

helvella profile image
helvellaAdministratorThyroid UK in reply to Aerocyc

I understand. That is difficult. But sometimes we've had members feel that the "free" issue is significant.

While I accept that the more expensive medicines are sometimes refused, I didn't want it appear to be the not paying a prescription charge that is the barrier. But barriers there are.

Best of luck persuading them.

SlowDragon profile image
SlowDragonAdministrator

What Levo were you taking before on 100mcg …..just Accord?

Mercury Pharma contains Acacia

Accord doesn’t contain Acacia

You can cut Accord 100mcg into 1/4’s using sharp craft scalpel

in reply to SlowDragon

yes just accord in one tablet.

I’m going to have to try cutting up smaller, i do have a sharp scalpel especially for this. I’m going to take a 50, 25, 12, and 6 ! To make a dose between 88 and 100. Sounds a nightmare but it’s just reducing from 100 slower without having to alternate which my body hates. Then if it’s still over in 6 weeks I’ll know to go down again to 88.

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