Help for T3?: Hi, I've been diagnosed hypothyroid... - Thyroid UK

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Help for T3?

Piccolina profile image
7 Replies

Hi, I've been diagnosed hypothyroid and on Levothyroxine for 5 years now. I am feeling lethargic (to the point of falling asleep at work/on public transport and missing my stop regularly) cold, muddled thinking most of the time and never really felt any different since being on Levo. I've just received my blood test results (I asked for free T3 to be included this time) and my free T3 is 3.8, TSH 2.52 and free T4 17.8. I have asked if I could be prescribed T3 even for a few weeks to see if it makes a difference. My GP won't listen and refuses to prescribe T3 as he doesn't know enough about it he says! He is prescribing 116 T4 Levothyroxine. I want to know how to buy T3 and how to work out the dose - can you help?

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RedApple profile image
RedAppleAdministrator

Welcome to the forum jacquelynhynes

He is prescribing 116 T4 Levothyroxine

That's a very unusual dose. What country are you in?

Piccolina profile image
Piccolina in reply toRedApple

I'm in the UK. I think he works it out by body weight.

RedApple profile image
RedAppleAdministrator in reply toPiccolina

Yes, body weight is sometimes used by medics to decide dose. But in the end, the deciding factor also has to take into account the tablet sizes available.

In the UK, we've previoulsy only ever had 25mcg, 50mcg and 100mcg tablet sizes to work with. Very recently one brand has introduced a 12.5mcg and 75mcg tablet size too, but most doctors are unlikely to be aware of that yet.

So I'm wondering what individual tablets you're prescribed to make up that 116mcg dose?

RedApple profile image
RedAppleAdministrator

jacquelynhynes,

As you have literally only just joined the forum, please read through our posting guidelines which can be found here healthunlocked.com/thyroidu...

Given the question you've asked in your post, please pay particuar attention to Posting Guidelines No. 19 and No.23

Thank you

Heloise profile image
Heloise

Hi Jacquelyn, after five years you are barely over a starting dose of T4. They should have prescribed until your TSH lowered to about 1.0 or even less. I'm in the U.S. so others may have to send you a private message about acquiring T3. It may be easier to get an NDT which could be an improvement over T4. Also, a little investigation about your ferritin, folate and B12 may help determine how well they assist your T4. I'm sure you can improve.

Working out the dose means starting low even 5 mcgs. and while the half life is much shorter than T4, it is far more potent so you may increase more quickly. Some people reduce their Levothyroxine but you may just want to add T3 to what you are taking since you need an increase of something.

Low cortisol may be the reason for falling asleep. Adrenal glands and thyroid glands have a connection that when one falters, the other is affected.

Piccolina profile image
Piccolina

Dear Heloise, thank you for replying. My TSH has come down from11.3 in 2013 to the current 2.52. I have been on 100mcg Levo for about a year and now the doctor is upping the dose to 116mcg as he says it's too low, and he did say that TSH could be lower, however he refuses point-blank to discuss T3, although I can see that over the past 3 years T4 has increased, TSH has decreased and T3 has decreased whilst cholesterol has raised. It seems to me this results would suggest I'm not converting but he disagreed and of course I'm not a doctor, but I have never felt any improvement since starting medication - although to be fair of course, I have no idea if I would have felt a lot worse without.

SlowDragon profile image
SlowDragonAdministrator

Most people on levo need low TSH around (or even slightly below) 1 to be adequately treated. So your GP is correct to increase your dose.

If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

(NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these. £99

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHSu) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too. Selenium supplements can help improve conversion and reduce symptoms too

You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.,

hypothyroidmom.com/92-of-ha...

chriskresser.com/the-gluten...

You should always take Levo on an empty stomach and then nothing apart from water for at least an hour after. Some/many of us find taking at bedtime seems to give better uptake /improved conversion

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

archinte.jamanetwork.com/ar...

Long research article - final conclusion paragraph below

"In conclusion, bedtime intake of levothyroxine in our study significantly improved thyroid hormone levels. This may be explained by better gastrointestinal bioavailability at night or by less uptake interference by food or medications. As shown in this study, bedtime administration is more convenient for many patients. Clinicians should inform their patients about the possibility of taking levothyroxine at bedtime. A prolonged period of bedtime levothyroxine therapy may be required for a change in QOL to occur."

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