Stopped levo as not helping - blood results - Thyroid UK

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Stopped levo as not helping - blood results

EmmaFlowerPower profile image
8 Replies

Hi all, I’m new to the Forum!

Can someone help me make sense of my blood results please.? I was diagnosed with hypothyroidism in March 2020. I started Levo 25mg mid May. I’ve been kept on this dose ever since and have not felt any better (symptoms are migraines/ headaches/ tiredness and fatigue/ dry skin).

(The following blood test was taken in the afternoon after I’d taken my daily dose of levo ..)

28/1/2021

TSH = 0.85 (0.4-4.5)

T4 = 10.9 (9-19)

Serum folate = 9.7 (3.1-20.5)

B12 491 (187-883)

Serum ferritin 83 (5-204)

I’m concerned that my T4 has barely improved and maybe this is the reason my symptoms are still there - previous bloods 5 years ago show my T4 at 16 so guessing this is normal for me.

The GP at the surgery has told me everything is fine and my bloods are normal and there is no pathological cause for my symptoms (insinuating it’s in my head I guess or mental health!) Im just exhausted all the time and haven’t experienced headaches for many many years until I had hypothyroidism! I was referred to Endocrinology last year but have heard nothing - guessing it’s due to Covid.

I was taking my Levo at bedtime so switched it to first thing in morning as didn’t realise I should have been doing this all along, and began having bad headaches daily all of sudden - so after 2 weeks of this I gave up and just stopped taking it (this was 2 weeks ago). I’ve stopped as I want to get some private blood tests done and want to see what my baseline levels are without medication.

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8 Replies
helvella profile image
helvellaAdministrator

I was taking my Levo at bedtime so switched it to first thing in morning as didn’t realise I should have been doing this all along,

I have always taken my levothyroxine at bed-time! It is a perfectly reasonable option.

In case you are interested - but do not feel you have to read!

Some papers which discuss taking levothyroxine at different times - such as bed-time.

Levothyroxine Replacement and Ramadan Fasting

pubmed.ncbi.nlm.nih.gov/237...

Effect of L-Thyroxine Administration Before Breakfast vs at Bedtime on Hypothyroidism: A Meta-Analysis

pubmed.ncbi.nlm.nih.gov/320...

Morning vs. Bedtime Levothyroxine Administration: What Is the Ideal Choice for Children?

pubmed.ncbi.nlm.nih.gov/303...

A Crossover Study Evaluating Effect of Timing of Levothyroxine on Thyroid Hormone Status in Patients of Hypothyroidism

pubmed.ncbi.nlm.nih.gov/313...

Effect of Timing of Levothyroxine Administration on the Treatment of Hypothyroidism: A Three-Period Crossover Randomized Study

pubmed.ncbi.nlm.nih.gov/300...

Alternative Schedules of Levothyroxine Administration

pubmed.ncbi.nlm.nih.gov/256...

Thyroid Diseases and Ramadan

pubmed.ncbi.nlm.nih.gov/228...

Pharmacotherapy: Hypothyroidism-Should Levothyroxine Be Taken at Bedtime?

pubmed.ncbi.nlm.nih.gov/213...

Effects of Evening vs Morning Levothyroxine Intake: A Randomized Double-Blind Crossover Trial

pubmed.ncbi.nlm.nih.gov/211...

Timing of Levothyroxine Administration Affects Serum Thyrotropin Concentration

pubmed.ncbi.nlm.nih.gov/195...

Effects of Evening vs Morning Thyroxine Ingestion on Serum Thyroid Hormone Profiles in Hypothyroid Patients

pubmed.ncbi.nlm.nih.gov/172...

A 25 microgram dose often has little effect. Enough for your own thyroid hormone production to drop a bit, but not enough to get your thyroid hormone level up.

Towards bottom of FT4 range despite having taken your tablet within a few hours. Suggests it is rather low.

EmmaFlowerPower profile image
EmmaFlowerPower in reply tohelvella

Hi Helvella. Thanks you so much for your response. I’ve just woke up I’m on a run of nights so I will be looking at all them links you’ve sent when I get chance - really grateful for the info.

tattybogle profile image
tattybogle

I notice this comment on your profile with your results"Worked out half life and think will be out my system after 5/6 so going to get a private blood test then."

If you are meaning 5/6 DAYS, then that will probably not be long enough to see where your TSH(thyroid stimulating hormone) is.

TSH may continue to rise over weeks.

And this will then have an effect on your own T4 and T3 levels.

i'm not quite sure how long i'd really leave it to get a true base line, but certainly at least 3 weeks i would have thought , and probably longer...more like 6 weeks ?

It's a shame they didn't increase dose after your results on 25 were in , there was room to do so according to your blood results at that time, (even though the latest ones will be preventing an increase because the TSH will be considered 'low enough')

It's not surprising you didn't feel any better and your fT4 didn't rise much , since 25mcg is so tiny. That dose often makes people feel worse, not better ,but it is sometimes necessary to introduce Levo gradually. But should be raised as quickly as tolerated.

Unfortunately your TSH has gone so low and got in the way of them increasing dose.

I agree with helvella , the fT4 result after taking Levo that morning does indicate that your hormone level is pretty low still.

Was there a reason given for them starting you on only 25mcg ? , the usual starting dose is 50mcg unless over 65 or with heart problems.

EmmaFlowerPower profile image
EmmaFlowerPower in reply totattybogle

Hi Tatybogle! Yes I’ve just edited my profile and meant 5/6 weeks, I keep getting tempted to just order the test kit now but I will wait it out until then as otherwise seems a bit pointless. They started me on 25 as I was reluctant to believe I had hypothyroidism as my test result on in Dec 19 showed TSH at 0.02 and T4 at 16 so I couldn’t get my head around why it would change so suddenly - I’d started a strict keto diet and although was having plenty of calories I was in ketosis much of the time so thought this may have caused a transient change to my bloods. I stopped the diet and my bloods improved a little but not much, and I felt exhausted, so GP started me off on 25 guessing in the view it could have been sub clinical, however due to Covid I don’t get a choice when GP gets back to me now and haven’t had the opportunity to discuss anything with him since.

SlowDragon profile image
SlowDragonAdministrator

Very helpful profile

It typically takes TSH six weeks to respond to any dose change....hence bloods should be tested 6-8 weeks after each dose change or brand change in levothyroxine

Standard starter dose of levothyroxine is 50mcg and dose is increased upwards in 25mcg steps until Ft4 is in top third of range and Ft3 is at least 50% through range

Starting and being left on too small a dose is counterproductive. It lowers your TSH, and your own thyroid output reduces significantly

Levothyroxine doesn’t “top up” failing thyroid but replaces it

Blood tests should ALWAYS be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Important to regularly retest vitamin D, folate, ferritin and B12. Frequently necessary to supplement to maintain optimal vitamin levels

guidelines on dose levothyroxine by weight

Even if we 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

bestpractice.bmj.com/topics...

EmmaFlowerPower profile image
EmmaFlowerPower in reply toSlowDragon

Hi SlowDragon. Thank you so much for your reply!

Blood tests should ALWAYS be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

I hadn’t realised this at the time. I was also taking the Levo for a long time with folic acid and have read that this can slow the absorption.

Important to regularly retest vitamin D, folate, ferritin and B12. Frequently necessary to supplement to maintain optimal vitamin levels

My VitD was 97 (so good I believe) was last checked in July but I was out in the sun loads. Obviously now don’t get much and on top of that I work shifts so I probably get less VitD than the average person. I also have scalp psoriasis which flares up in winter so I guess I’m low in it during these months. I’ve tried to supplement with D3 from H&B 2 years in a row. First time tried 2000iu and last year I tried 400iu and even then I was getting a side effects, worsening tiredness and scare joint pain in both knees, and throbbing kidney pain, so I stopped it as for some strange reason it must not agree with me.

I’ve also tried using floravital recently for the B Vitamins to see if that helped, however even at the lowest quantities of these it severely constipates me. I have no idea why I’m so sensitive to this either.

I was tested for coeliac (I don’t get gut symptoms normally) but the GP wanted to rule is out as was regularly complaining of fatigue - and this was negative.

I will check out your links when I get chance as I’m on a run of nights at min, really appreciate the the time you have taken to reply.

SlowDragon profile image
SlowDragonAdministrator in reply toEmmaFlowerPower

If vitamins are low it’s essential to improve them

Often best option for vitamin D is mouth spray by Better You as it avoids poor absorption in gut.

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some 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...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

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

ncbi.nlm.nih.gov/pubmed/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 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

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

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...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

Notice how much vitamin D many of these medics are taking

vitamind4all.org/letter.pdf

SlowDragon profile image
SlowDragonAdministrator

28/7/2020 TSH = 1.85 (0.4-4.9)

T4 = 10.5 (9-19)

Folate = <2.2 (3.1-20.5) STARTED FOLIC ACID 5mg

Serum B12 351 (187-883)

Serum ferritin 37 (5-204)

July blood test showed you were in dire need of 25mcg dose increase in levothyroxine

Essential to test Ft3 as well as TSH and Ft4

Ferritin, Folate and B12 too low

On levothyroxine we need optimal vitamin levels and this frequently means supplementing to maintain

Essential to test vitamin D too

just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Optimal results would look something like this

TSH = 0.5 (0.4-4.9)

T4 = 18.5 (9-19)

FT3 6.0 (3.1-6.8)

Folate 19 (3.1-20.5)

Serum B12 800 (187-883)

Serum ferritin 80 (5-204)

Vitamin D 108nmol (75-150)

Stopping Levo you are likely to see vitamins plummet low

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