Taking levothyroxine : Hi I have just joined, is... - Thyroid UK

Thyroid UK

137,936 members161,765 posts

Taking levothyroxine

Alanafox profile image
14 Replies

Hi I have just joined, is levothyroxine better absorbed at night? I take 25mcg levothyroxine and I want to make absolutely sure I am taking it correctly and getting the most out of it.

Diagnosed hypothyroid 2012. Thanks

TSH 5.3 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Written by
Alanafox profile image
Alanafox
To view profiles and participate in discussions please or .
Read more about...
14 Replies
SeasideSusie profile image
SeasideSusieRemembering

Alanafox Some people find they do better taking their Levo at night but it should be taken on an empty stomach, at least 2 hours after eating (3 is better if it's your main meal of the day) and with a glass of water only.

Have you always been on 25mcg since diagnosis in 2012? If so why? It is a starter dose for children, the elderly or someone with a heart condition.

Your results show that you are undermedicated and you need an immediate increase to 50mcg, retest in 6 weeks, another increase of a further 25mcg, retest after another 6 weeks, and so on until your TSH is around 1 and FT4 and FT3 in the upper part of their reference ranges.

Have you had thyroid antibodies tested?

Have you had vitamins and minerals tested - Vit D, B12, Folate and Ferritin? Iron panel and full blood count?

Post any other results, with reference ranges, for members to comment and say if you are supplementing, with what and the dose.

Alanafox profile image
Alanafox in reply to SeasideSusie

I take levo on an empty stomach 4 hours after eating and with a full glass of water. No I was on 175mcg before that, then 150mcg. Then 175mcg and 10mcg T3.

SeasideSusie profile image
SeasideSusieRemembering in reply to Alanafox

Alana

Why has your dose been changed and why was T3 removed? Any results from those times?

And what about antibodies, vitamins and minerals?

Alanafox profile image
Alanafox in reply to SeasideSusie

Oct 2017 (150mcg)

TSH 0.03 (0.2 - 4.2)

Free T4 20.8 (12 - 22)

Aug 2017 (175mcg and 10mcg T3)

TSH <0.02 (0.2 - 4.2)

Free T4 22.7 (12 - 22)

Free T3 4.5 (3.1 - 6.8)

TPO antibodies 910.5 (<34)

TG antibodies 378.3 (<115)

I only have vitamin and mineral levels from July, I have only just moved to a new GP and I see her in 2 weeks and so haven't been able to get these tested. Do I still post?

SeasideSusie profile image
SeasideSusieRemembering in reply to Alanafox

Alanafox

So here we can see where the root of our problem lies

TPO antibodies 910.5 (<34)

TG antibodies 378.3 (<115)

and we can see that you have a doctor who knows nothing about treating hypothyroidism.

Aug 2017 (175mcg and 10mcg T3)

TSH <0.02 (0.2 - 4.2)

Free T4 22.7 (12 - 22)

Free T3 4.5 (3.1 - 6.8)

Presumably it was the endo who removed your T3, and is it the endo who has reduced your dose of Levo to 25mcg and was that reduced from 150mcg to 25mcg in one go? If so he ought to be shot!

**

Starting with your raised antibodies, this means that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

I believe you have an endo who is a diabetes specialist (most of them are, thyroid specialists are about as common as rocking horse droppings), and as such he pretends he knows how to treat hypothyroidism but in reality he knows nothing about it.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's pretty obvious from your vitamin and mineral results below that this is a problem for you and I will reply to that particular post in a minute.

To address the absorption problem, please see SlowDragon 's reply to this post which has information and links to help healthunlocked.com/thyroidu...

**

Looking at your thyroid test results, when you had these results

Aug 2017 (175mcg and 10mcg T3)

TSH <0.02 (0.2 - 4.2)

Free T4 22.7 (12 - 22)

Free T3 4.5 (3.1 - 6.8)

you had your T3 removed and your Levo reduced to 150mcg. However, the fact that your TSH was suppressed is of no significance. TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low. So the fact that you were taking Levo and T3 means that your TSH was low. Also, the fact that your FT3 was in range actually means that you weren't overmedicated. What should have happened is that Levo could have done with being reduced by 25mcg to bring it into range, and your T3 should have been increased because your FT3 was too low, it should be in the upper part of it's range.

So by removing your T3 and lowering your Levo you had these results

Oct 2017 (150mcg)

TSH 0.03 (0.2 - 4.2)

Free T4 20.8 (12 - 22)

No great change in your TSH (your endo was obviously trying to get that back into range) and the FT4 did indeed lower. However, what is missing is FT3 and if that had been tested it would have been even lower than your August results due to the fact that your T3 had been removed. Your endo should have tested it considering he removed the T3 - very basic stuff.

So now you're on 25mcg Levo and look what your idiot doctor has managed to do

TSH 5.3 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

He's managed to send you very, very hypothyroid again, you're probably back to about where you were when you were diagnosed. More proof that this doctor is a complete idiot.

Please make an appointment with your GP as soon as possible and ask for an increase in Levo as mentioned above, with the regular 6 week retesting/increasing as mentioned. In support of your request, you can show him the following from thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.

Alanafox profile image
Alanafox in reply to SeasideSusie

Ferritin 22 (30 - 400)

Folate 2.1 (2.5 - 19.5)

Vitamin B12 196 (190 - 900)

Vitamin D 27.8 (25 - 50 deficiency)

Taking ferrous fumarate, folic acid, hydroxocobalamin injections and 800iu vit D

SeasideSusie profile image
SeasideSusieRemembering in reply to Alanafox

Alanafox

Ferritin 22 (30 - 400)

Taking ferrous fumarate

How much ferrous fumarate?

Did you have iron panel and full blood count done? Do you have confirmed iron anaemia deficiency?

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

As your ferritin level is below range, ideally you need an iron infusion so I would ask for one as will raise your level within 24-48 hours, tablets will take many months.

Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

**

Folate 2.1 (2.5 - 19.5) Vitamin B12 196 (190 - 900) hydroxocobalamin injections

How often are your injections? Is your folic acid daily?

**

Vitamin D 27.8 (25 - 50 deficiency)

800iu vit D

You should be on loading doses, not taking 800iu D3 - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

If your GP wont give you the loading doses, come back and we can tell you what to buy. You will never, ever raise your level by taking 800iu daily, that is barely a maintenance dose for someone who already has a decent level.

Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

All these poor nutrient levels must be optimised for thyroid hormone to work.

Alanafox profile image
Alanafox in reply to SeasideSusie

210mg 3x ferrous fumarate a day since 2013.

MCV 78.5 (80 - 98)

MCHC 385 (310 - 350)

MCH 28.2 (28 - 32)

Haematocrit 0.40 (0.37 - 0.47)

RBC count 4.41 (3.80 - 5.80)

WBC count 6.12 (4 - 11)

Haemoglobin 115 (115 - 150)

Iron 5.7 (6 - 26)

Transferrin saturation 13 (12 - 45)

B12 injections every 3 months, last one August 2017 and folic acid is once a day.

Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Alanafox

Alana

So those results do indeed confirm iron deficiency anaemia and 3 x ferrous fumarate daily is the correct treatment. However, my suggestions above still stand. Your ferritin must reach at least 70, an iron infusion will help, then it must be kept there. Are you under a haematologist and being monitored?

If your last B12 injection was in August, then if you didn't have one in November you are now overdue. You must chase it up. Many people find 3 monthly injections not enough and they need 'topping up' between injections. You can pop over to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

Alanafox profile image
Alanafox in reply to SeasideSusie

I was under a haematologist but they discharged me. I am not actively monitored for iron deficiency

Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Alanafox

Some haematologists ask that patients are referred back to them if ferritin falls below 50 and will give a second iron infusion. Maybe you should be asking about this.

Have you had confirmation of iron deficiency anaemia, because you are being given the right amount of FF for it?

Alanafox profile image
Alanafox in reply to SeasideSusie

Confirmation of iron deficiency anaemia

SeasideSusie profile image
SeasideSusieRemembering in reply to Alanafox

Confirmation of iron deficiency anaemia

In that case, see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

Monitor the person to ensure that there is an adequate response to iron treatment.

I think you should be discussing this with your GP.

SlowDragon profile image
SlowDragonAdministrator

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

You are extremely under medicated now, due to an incompetent endo removing your T3

This is happening far too often. Many turn up here, always the same results- dire vitamin levels as soon as T3 is stopped

Have you had DIO2 gene test done? If not would recommend it, may help getting T3 reinstated

thyroiduk.org.uk/tuk/testin...

Poor gut function as result of Hashimoto's can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

See Box 1. Some possible causes of persistent symptoms in euthyroid patients on L-T4

onlinelibrary.wiley.com/doi...

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

Also they are collecting examples of people who were doing well on T3, then had it removed and now unwell

Suggest you do brief outline of what's happened

Email dionne.fulcher@thyroidUK.org

You may also like...

Taking Omeprazole with Levothyroxin

need to take Omeprazole when is best time to take Levothyroxine? I’ve tried to avoid taking...

Taking Levothyroxine at night

it ok to take Levothyroxine at night? I take 25mcg Levothyroxine and before that I was taking...

Advice on Taking Levothyroxine

don’t take Levothyroxine at exactly the same time every day? What I would like to try is taking...

Taking Levothyroxine and NDT together

hasn't reduced Levothyroxine (100mg). I feel great now but not sure if I should be taking both. Any...

Stopped taking Levothyroxine

anxiety about taking medication and had been having terrible palpitations so I stopped taking any...