levothyroxine: Had Graves’ disease and had total... - Thyroid UK

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levothyroxine

Pennypingu profile image
15 Replies

Had Graves’ disease and had total thyroidectomy a few weeks ago due to U3 nodule on left side and numerous ones on right side, obviously I’m now on Levothyroxine, told to take Levothyroxine in the morning, does anyone take it at night? I’m on a few other medications,Esomeprazole needs to be taken at least 4 hours either side of Levothyroxine and other meds a certain time away from Esomeprazole, it’s impossible to shuffle this and other meds around for them to work properly but I’ve worked out it can be done if I take Levothyroxine at night.

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Pennypingu
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pennyannie profile image
pennyannie

Hello Pennypingu and welcome to the forum :

It is very early days for you so please do not expect too much too soon :

There are many forum members who take their T4 - Levothyroxine at night so give it a try.

Having Graves is difficult enough and it would help us help you better if you gave us a little more detail about your thyroid journey though I read you have been diagnosed with IBS and Pernicious Anaemia.

No thyroid hormone replacement works well until the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels and we can advise on these as some NHS ranges are too wide to even be sensible.

The thyroid is a major gland responsible for full body synchronisation from your physical through to your mental, emotional, psychological and spiritual well being - your inner central heating system and your metabolism.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.

Some people can get by on T4 only -

Others find that after a while T4 doesn't seem to work as well as it once did and that by adding in a little T3 - likely at a similar value to that their thyroid supported them with, they are able to restore T3/T4 hormonal balance and feel better.

Others can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as the human thyroid gland and derived from pig thyroids, dried and ground into tablets referred to as grains.

I have Graves but treated with RAI thyroid ablation back in 2005 and only started my research in around 2014/15 when I became very unwell - with I believe the consequences of drinking this toxic substance - but anyway - of all the research and books I purchased I believe Elaine Moore's research to be the most well rounded of all I read - elaine-moore.com

Pennypingu profile image
Pennypingu in reply to pennyannie

had graves since 2020, GP and Endo working together because of covid, have a lot of sensitivity to bulking agents in meds but GP found a liquid carbimazole I could tolerate and a regime that worked for me, in non of that time was I offered an ultrasound , nothing I knew about really, because I didn’t want the iodine treatment or surgery Endo discharged me to GP. All was going well until the GP left the practice, within days another GP rang me tells me I’m not on the usual regime or medication for thyroid treatment it’s not how they do things there. Went downhill from there. To cut a long story short, 6 months of hell until I got to see a registrar who was doing some time at the practice, fast tracked me for lots of tests due to rapid weight loss, nodules were found and things happened pretty fast due to what they found. I have been a silent member of this group so picked up a lot of good information. Definitely am taking things slow, 100mcg has been reduced to 75 now as pre op bloods showed was too much . Next bloods and check in April, it is hard work and am struggling but I know it takes time. Thanks for answering

pennyannie profile image
pennyannie in reply to Pennypingu

Having Graves can in itself be traumatic but to have a doctor switch treatment procedures which were working well for you to a treatment regime that caused additional health issues is simply alarming and I'm sorry to read this happened to you.

Hopefully going forward you will be able to put this all behind you and so keep us in the loop and we can help you work out your next best steps back to better health.

SlowDragon profile image
SlowDragonAdministrator

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

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

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

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

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

If 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

Why are you taking Esomeprazole

This is a PPI and will reduce vitamin absorption

On levothyroxine we must maintain good vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

When were vitamins last tested

Pennypingu profile image
Pennypingu in reply to SlowDragon

I have IBS D and GORD, also B12 Deficiency which I have injections for, Vitamin Deficiency too. Esomeprazole is for the GORD. I know I have to leave 4 hours either side of Levo for that as I did also with calcium tablets due to a problem after surgery. Calcium stopped now. Have had ferritin infusions in the past so do keep an eye on vitamins etc. Never had a problem getting them tested with old GP , will have to see what happens now with different one. Never really spoken up for myself before but with how I was treated last year by GP think I’ll have to change. Thanks for all the information, always reading what you put 😊 and have so far followed the blood test regime . Take vitamin D daily, B12 injections every 10 weeks, had bloods done September last year for those and iron panel. Ferritin and full bloods done last week by hospital for another problem I have so all should be up to date for a while

SlowDragon profile image
SlowDragonAdministrator in reply to Pennypingu

IBS and GERD are both often linked to LOW stomach acid

PPI are used to reduce stomach acid

Low stomach acid can be a common hypothyroid issue

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

How to test your stomach acid levels

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Useful post and recipe book

healthunlocked.com/thyroidu...

you can’t just stop a PPI , has to be weened off slowly

Ppi like esoprazole or Omeprazole will lower vitamin levels even further

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

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

But never assume you have low stomach acid

healthygut.com/4-common-bet...

Pennypingu profile image
Pennypingu in reply to SlowDragon

Am hoping now I have had operation and on the levothyroxine I can reduce more medications I’m on, weaning off propranolol at present,

SlowDragon profile image
SlowDragonAdministrator in reply to Pennypingu

how much propranolol are you taking

you have to reduce propranolol very slowly

Propranolol reduces uptake and conversion of levothyroxine

pubmed.ncbi.nlm.nih.gov/168...

rejuvagencenter.com/hypothy...

escardio.org/Journals/E-Jou...

labtestsonline.org.uk/tests...

Drugs that may decrease PTH include cimetidine and propranolol.

Pennypingu profile image
Pennypingu in reply to SlowDragon

10mg twice a day, yes have been on it years so have to withdraw slowly,

SlowDragon profile image
SlowDragonAdministrator in reply to Pennypingu

Try reducing by 5mg

Wait 4-6 weeks

Reduce by further 5mg etc

I was stuck on 40mg daily ( 4 x 10mg ) for 20 years

Pennypingu profile image
Pennypingu in reply to SlowDragon

consultant said drop the evening 10 mg for a week and if ok drop the morning one off!!

Really? I don’t think so, have just dropped the evening one to 5 mg, good job we have google and healthunlocked.

SlowDragon profile image
SlowDragonAdministrator in reply to Pennypingu

Ferritin and full bloods done last week by hospital

Can you add actual results

Pennypingu profile image
Pennypingu in reply to SlowDragon

Not had results from hospital as yet and can’t access results through GP until hospital send through to them. Can only access GP blood tests results. Did enquire at hospital about accessing their results by NHS app but it’s not yet available

Sept results were:B12-1556(187-883) high but not long had B12 injection, Ferritin 58(5-204), Folate8.0(3.1-20) vitamin D-80 no range, I think ferritin and folate on low side but because in range no treatment and because I can’t take tablet form of these I can’t self medicate, I have to have infusions.

Latest thyroid results post op done in February

TSH 0.01(0.35-4.9)

T3 3.5(2.4-6)

T4 18.8(9.1-17.6)

Obviously will take a while for best results

Cavapoochonowner profile image
Cavapoochonowner

Hello there,I too have had a thyroidectomy due to graves disease(June 2022).I take my levothyroxine during the night when I get up to the toilet.I take some vitamins before I go to bed about 10pm,and also amitriptyline for migraine prevention.I just make sure I take my levo after about 2am so I have left at least 4 hours since my other tablets.I can then eat my breakfast as soon as I get up and take my morning tablets with no problems.Hope this helps.

Pennypingu profile image
Pennypingu in reply to Cavapoochonowner

Thank you, will give it a try 😊

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