Help !: Hi I have been on 200 thyroxine for a... - Thyroid UK

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Help !

SherryAMum profile image
14 Replies

Hi I have been on 200 thyroxine for a long time - diagnosed 14 years ago and tbh never felt well - which is why i forget to take it everyday !

I asked for some tests but refused the T3 although I was told i could now have it - i have been increased to 250 thyroxine

I had a full blood count done as well but don’t understand what i’m reading !

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SherryAMum
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14 Replies
shaws profile image
shawsAdministrator

You are very hypothyroid as your TSH is nearly 13 when it should be 1 or below. Your Free T4 is below range which would mean your FT3 will also be low and that's why GP has offered you T3. I don't know if he realises you have been hit-and-miss with your levothyroxine.

Blood tests have to be at the very earliest for thyroid hormones. It must also be a fasting test and allow a gap of 24 hours from your last dose of levo and the test and take it afterwards.

Test should be done about every six weeks and ask also for B12, Vit D, iron, ferritin and folate as we are usually deficient and this also causes unpleasant symptoms.

You take levothyroxine on an empty stomach with one full glass of water and wait an hour before eating as food interferes with the uptake of the hormones,

I think you would have been wise to accept your doctor's T3 added to T4 as research has shown that many feel much better with a combination. T4 (levothyroxine) is a prohormone (inactive) and has to convert to T3. T3 is the only active thyroid hormone and is required in our billions of receptor cells. It is needed to drive everything in our body from head to toe and brain and heart need the most.

You have to get into a routine and it becomes so automatic you just don't think about it. Especially if you take it when you get out of bed. You've the rest of the day free.

SherryAMum profile image
SherryAMum in reply to shaws

Thankyou - have never seen an endo but I am on a mission to take it daily and hope to start to feel better

SlowDragon profile image
SlowDragonAdministrator

You could try taking it at bedtime

Research shows it can be more effective

Get a weekly pill dispenser and keep it by the bed

It is essential to take a steady non varied dose.

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

If you take at bedtime needs to be 2 hours or ideally 3 hours after a meal

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Low vitamin levels stop Thyroid hormone working

Has you endo considered poor absorption of Levo in gut. Vitamin C at same time can help

ncbi.nlm.nih.gov/pubmed/246...

Low stomach acid is very common

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

SherryAMum profile image
SherryAMum in reply to SlowDragon

Thankyou I have had a look at the other blood results but i think i also need to start taking it all seriously and break this cycle of feeling so bad

shaws profile image
shawsAdministrator in reply to SherryAMum

If you decide to take at bedtime, and you are having a blood test next a.m., miss the night dose and take after test and bedtime as usual.

Some take a weekly dose of levothyroxine but I don't think I'd personally want to do that. It is because it is slow acting.

Clutter profile image
Clutter

SherryAMum,

TSH 12.79 and FT4 9 means you are very undermedicated. You need to take Levothyroxine every day but increasing to 250mcg daily may make you overmedicated so make sure you have a follow up thyroid test in 6-8 weeks and take your Levothyroxine after the blood test.

SherryAMum profile image
SherryAMum in reply to Clutter

Thankyou - I am going to try and remember to take it - 14years and I am terrible - it swings because I’m too tired to remember !

Clutter profile image
Clutter in reply to SherryAMum

SherryAMum,

I set an alarm task on my phone to remind me and mark it completed when I've taken it.

Another strategy is to leave your tablets by a glass of water on your nightstand, or by your toothbrush and take them last thing at night or 1st thing in the morning.

SlowDragon profile image
SlowDragonAdministrator in reply to SherryAMum

A poor memory and brain fog are common symptoms of being hypo.

silverfox7 profile image
silverfox7

You could put a weeks supply in a weekly pill box. That way you have a check to make sure you took it as well.

marigold22 profile image
marigold22

You must get the Free T3 blood test. It will tell you (and us) more about what's happening. My view is that you are on a very high dose of thyroxine (14 years like I was), and still not feeling any better. My view also is that you will probably find out (like I did) that you need T3 to feel anything like well. You have gone 14 years still feeling Krap and you have a poor memory and don't feel well..... I know that feeling all too well.

So - 1. You may need to take T3 to feel well

2. You may have Hashimoto's Thyroiditis which causes inflammation in the body - Have you ever had the Thyroid Antibodies tested?

3. You may have a faulty thyroid gene (the DIO2) which means your body cannot convert T4 into the usable thyroid hormone T3.

I discovered after 35 years of feeling Krap that I didn't have simply Hypothyroid, I had Hashimoto's and the faulty thyroid gene. I discovered both these by doing 2 private tests.

It's not you - it's the doctors Please believe me x

SherryAMum profile image
SherryAMum in reply to marigold22

Thankyou - I’ve never heard of Hasimoto so may ask for that as well thankyou

marigold22 profile image
marigold22 in reply to SherryAMum

You could do a Google search of Hashimoto's Thyroiditis to get info on it. Basically it's thyroid antibodies attacking the thyroid, so the thyroid output becomes less. It causes inflammation in the body, which doesn't happen with basic Hypothyroid. The medication as far as doctors & endo's is the same as Hypothyroid BUT there is the problem of inflammation in the body with Hashimotos. You need to ask your GP to test Thyroid Antibodies. The NHS generally only does one of the two thyroid antibodies. I had that done by the NHS and the one they tested returned as negative. But then in January 2017 I paid for a private thyroid antibody test and the one the NHS doesn't test returned as very high. So I didn't know until January 2017 that I actually have Hashimotos. So then I knew I had to decrease & get rid of the inflammation associated with it. In August 2017 I consulted a homeopath out of sheer desperation at being so let down by the NHS and he told me to eat a very different diet. It has worked..... no more feeling suicidal, no more agoraphobia, I don't get stressed... He says the inflammation has gone and I believe him as I feel so incredibly different. Please send me a PM if you would like a copy of my Word Doc for my Special way of Eating (I don't call it a Diet as I didn't need to lose weight)

SeasideSusie profile image
SeasideSusieRemembering

I asked for some tests but refused the T3 although I was told i could now have it - i have been increased to 250 thyroxine

Do you mean that you were refused the Free T3 test and can have it now, or do you mean you have be offered T3 (liothyronine) in addition to your Levo?

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