Thyroid UK
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Adding T3 to perscribed Levothyroxine

Hi, my name is Kevin im 27 and have been suffering with a under active thyroid for the last 3 years, i started on 25mg through the NHS, went up to 225mg and currently sit at 175mg.

When i first got diagnosed i was really puffy with lots of water retention to the point i could see the water slosh in my thighs, i was depressed and slowly speaking and my shins burned alot. I thought this was due to me working nights. It got to a point i could literally sleep 24hrs + over the weekend and id wake up with my left arm all numb. This is the point i gave up and asked my mum to take me to the doctors.

3 years on, My weight has gone out of control and i cant loose weight this makes me seriously unhappy, i still sleep heavily at random time slots and i really am energyless. 3 months ago i went to ask my gp about T3 and she said there is not enough evidence and i dont need it. They did a blood test, the T3 was borderline and my VitaminD was low. Currently taking 175mg levo and 1000UI vitD. They wanted to up my Levo again but i couldnt do it as when i go past 175mg i get dizzy, cant walk straight and my areolas get really puffy. Im at a point i am so desperate because i cannot continue a normal working life. I know just cannot do it.

I was recommended to come on here via Kitti on the FB ITT page, as id like to add T3 to my T4, i dont want to waste time begging the GP who will refuse me or finding a endo as theres none where i live in Northampton that i can find.

Has anyone, who is on perscribed Levothyroxine sourced and added T3 themselves?

How do i go about getting my T3, DIO1 & DIO2 genes checked properly and where? and where can i get T3 to add in small amounts, slowly to my T4?

please help, Kevin

27 Replies
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First thing is can you post your most recent results for thyroid- TSH, FT4, FT3, TT4, plus TPO and TG antibodies

Do you know if you have Hashimoto's also called autoimmune thyroid disease, diagnosed by high thyroid antibodies. If you have Hashimoto's then looking at food intolerances is likely, most common is gluten.

Essential to test vitamin D, folate, ferritin and B12, these are often too low when we are on Levothyroxine.

Private tests are available

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

DIO2 gene test is available

thyroiduk.org/tuk/testing/D...

Or more comprehensive tests just been launched

thyroiduk.org/tuk/testing/B...

Some typical posts about vitamins

This one Low vitamins due to under medication

healthunlocked.com/thyroidu...

Low vitamins causing low TSH high FT4 and low FT3

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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Hi there, thanks for your time to reply, This is all i got on my copy...

Serum TSH level (XaELV) - Above range - 30.3 mu/L [0.4-5.5]

Outside reference range

Serum free T4 level (XaERr) - 13.0 pmol/L [11.5-22.7]

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When are these results from?

They show you are very hypothyroid. TSH way above top of range

Strongly suggest you get full private testing

1000iu vitamin D supplement is likely not enough

How low was it before starting supplementing and has it been retested

If under 25nmol you should have had loading dose

Looking to get level to around 100nmol

Look up your local CCG guidelines

Eg Oxfordshire

oxfordshireccg.nhs.uk/profe...

Low vitamin D linked to insomnia

drgominak.com/sleep/vitamin...

You will need to get vitamins optimal and, if have Hashimoto's, very likely need to be gluten free. Then if FT3 remains low, is time to consider adding T3. But the other steps need sorting first.

If we take too much Levothyroxine, it can get converted into Reverse T3, this in inactive and blocks T3 as well. Sounds like that might have been happening when they put your Levothyroxine up beyond 175mcg

Going strictly gluten free helps gut heal

Do you get any gut symptoms

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Results from september 2017, not got hasimotos as far as i know, no gut problems however i used to get constipated really badly when my levels were off. Been taking my vitD since that test in september and im due a routine test soon, to add when i first got diagnosed my kidney and liver were in the red zone and were heavily watched i was told

Kev

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So in September you were severely hypo

You don't need any gut symptoms to still find you can be severely gluten intolerant, especially if you have high antibodies

Over 90% of primary hypothyroidism is due to autoimmune thyroid disease (high antibodies)

Get tested and find out

Your GP is not currently managing you very well

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My GP said ill be on Levo life long as i still have antibodies

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So you already know you have Hashimoto's (autoimmune thyroid disease)

Almost everyone on levothyroxine is on it for life. Only in very rare exceptions is it temporary

Hence prescriptions are free. It’s a serious and lifelong condition

Going absolutely strictly gluten free diet helps a large percentage of Hashimoto’s patients.

Low vitamin levels are a result of the Hashimoto’s affecting the gut, causing low stomach acid

Read up as much as possible about Hashimoto’s

We need to address the cause

Good websites

The Thyroid Pharmacist

Chris Kresser

DrKnews

Amy Myers

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Ah ok, i thought hashimotos was something different to hypothyroidism, please bear with me as all the info i really know is from my GP, Kev

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You are very, very hypothyroid with a TSH of 30.3 mu/L.

The aim when we're on Thyroid Hormone replacements is a TSH of 1 or lower with FT4 and FT3 in the upper part of the range.

No wonder you feel so ill. You are on an insufficient dose of T4 and I am not surprised you want to try some T3.

Your FT4 is near the bottom of the range so it is clear that you cannot convert T4 to sufficient T3.

In reality your FT4 should be nearer 20.

You need B12, Vit D, iron, ferritin and folate tested.

Your doctor has been negligent in allowing your TSH to be so high.

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Thanks for the mention Kevin

Your TSH is seriously 30 on 175 levo ! Hells bells no wonder you feel ill, sodding doctors !

Great advice from SlowDragon as always

If greygoose & SeasideSusie are around too to offer more wonderful wisdom. Particularly with a view to starting to self med.

I will pm you some supplier details, but please get the blood tests done that are recommended by these wonderfully wise folk on here and take heed of the advice regards going low and slow.

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Oh and get the docs to tell you whether you are Hashimotos, its important. If you are and at the stage you are at with the disease it is most recommended you take all necessary steps to try and reduce your antibodies, ie gluten and possibly lactoes free. it will help with the way you feel.

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All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards..

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Where do i go from now? ive been off work for a few months due to shoulder damage but im facing going back soon and cant make the hours, my mum dosent seem to understand and said we will go see the GP.

What should i do step by step? isnt there anything i could do in the meantime to feel a little better? i got a feeling ill just get fobbed off again by the gp

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How much do you weigh Kevin ?

Because you do shift work this'll impact your hormone production. We make our hormones when we go to bed. TSH is highest late at night. We then go to sleep and the body gets on with making thyroid hormones. In the second half of the night the body has made its thyroid quota and now it starts to match this with the correct cortisol amount.

Cortisol and thyroid work together. So if we are low in thyroid it is likley we will be low in cortisol.

With shift workers their hormone production can be all over the place.

Often if we take thyroid hormones we still can't get the cortisol to increase production because we are taking thyroid at the wrong time in the day. Bedtime dosing of thyroid is a better bet.

Adding some T3 is likely to be helpful, but always start low. 3mcg is a good starting dose. You can get T3 on the net.

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i havnt weighed my self in ages as i just gave up with the weight gain, from how i was to how i am now is horrible, none of my clothes fit and my chest area has increased hugely but the doctors say its normal..

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Hi Kevin,

I know there is a lot of new information to take in, but a TSH of 30 is pretty high. Mine only went up to to 5.6 and I was falling asleep all over the place with horrible pains in my achilles tendons and thigh muscles - so you must be feeling pretty rubbish. Poor thyroid function is linked to musculoskeletal problems and an increased risk of injury, so your shoulder may be a part of this picture too.

You are going to have to educate yourself a bit about all this, and if your mum doesn't get it, then she will either have to learn to get it, or you will have to take complete control and not worry about what your mum thinks (easier said than done I know!). If you don't get decent treatment, you could land up very ill indeed in a few years so the best time to take action is now.

Have a look at the Thyroid UK website, there is lots of useful info on there. Email Louise at louise.roberts@thyroiduk.org and ask for a doctors list. They have a list of NHS and private endos and Drs who people have had OK experiences with. Make an appointment with one. If you go for the NHS route be sure to ask for an urgent referral.

If your GP is rubbish, you need to find a better one - even if they are only a bit better it will be an improvement on what you have now. My GP is great, so there are some good ones out there.

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Hi Kevin I bet you feel like you'd never asked ! lol !

I appreciate it is so much to take in, but stick with it honestly its worth it.

If you have the time I'd recommend you do as much reading of posts as possible on here to get a feel for it all. And all the links recommended too of course.

All these lovely people will help you along. If you're having a bad day come on n do a post and so many lovely people will come along and pick you up, its fab !

Hope you feel better soon Best Wishes Xx

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Cheers guys. Just got up after a a regular extended nap of mine 7-8hrs. I need help and i havnt been getting it. Its been like...your levels are fine.. back to work and daily life and i just cant make it. My family literally think im lazy but i understand that they dont get it. But its tough and worrying. Quetions recently arose like how will i make it in life like this? I dont want to commit to buying a house etc becuase im not stable enough to maintain work to

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Has anyone used this place? i dont want to waste time with the gp anymore, we were going to go this week to see my gp but i really dont see the point. This clinic in Birmingham isnt too far to consider...

birminghamthyroidclinic.co.uk/

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Hi Kevin, it might be worth asking about the Birmingham clinic in a separate post too so that more people see your question. Also searh old posts too in case it's been discussed before. If you do get a private prescription for T3, you should be aware that it is very expensive in the UK - but there are ways around that problem which the g4oup can help you with if / when the situation arises. My instinct is that you night shifts are making the situation much worse. Is there any way of changing to more conventional working hours? Even if it means thinking about getting a new job. Something else for you to think about anyway!

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In answer to your question, yes – I get my levothyroxine prescribed, but also self-medicate with T3. I had endless battles with the NHS trying to regain my health, was continually fobbed off, and very much regarded as a hypochondriac, depressed, menopausal (you name it, I got it with both barrels).

My T3 was continually low in range, but it was of no interest to my endocrinologist or GP. So I bought some. It was the best decision I have ever made, and it has totally changed my life. I also see a private nutritionist to address multiple deficiencies and gut issues, and made changes to my diet and lifestyle. I still have to monitor things, but I am in a much much better place.

You have mentioned the Birmingham Thyroid Clinic – are you local to there? There is a very good thyroid group who meet regularly in and around the Midlands.

healthunlocked.com/thyroidu...

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Hi, i have no problem self medicating the t3 slowly. But how would i go about checking my levels. Could i use the gp to do my blood tests?

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Your GP should routinely test your TSH but they rarely test T3 (and only T4 if you’re lucky). Labs tend to override requests by GPs to do anything but the TSH.

My endo has accepted that I self-medicate with T3, and has agreed to still see me annually, so I will usually get my TSH, T4 and T3 tested.

However, if you can afford to do so, it’s easy to get private blood tests done. There are several companies who offer this service – and it can include all the tests that tend to be recommended on this forum. I’ve used Blue Horizon myself. Some people do a home fingerprick test, but I am a total wuss and get a blood draw. Information here:

thyroiduk.org/tuk/testing/p...

When I get tested privately, I do the whole lot – TSH, T3, T4, both sets of antibodies (to see if I’ve managed to get them reduced), B12, D, folate and ferritin. I’ve never yet met a doctor who thinks any of those are important.

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I use Medichecks to monitor my thyroid levels. They usually so some cheap deals on a Thursday. I get the kit which does tag, freet4 and freet3. You can often get it on offer for £29. When it's on offer I sometimes buy a few as you have 6 months to use them. You get a short Drs report with the results although they are not always up to speed on thyroid treatment so good to still post results here for feedback to start off with. The medichecks medical director is very knowledgeble though, and you can always phone them and ask him to call you if you have any queries.

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So i can rely on the medi check reports and sourcing my own t3? I think id get the test that has all the vitamins as my vitD was off.

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Absolutely! The tests are very reliable.

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So my plan is, source some T3, use medichecks free T3 for 29.00 when i need to check my levels and then use my gp to check everything else. Does this sound ok to do? anyone got any links to where i can get T3, i did find one link but their T3 is stamped out of date. Kev

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