Self medicating T3

[A2C3]

Hi everyone, I hope you are all okay. Just out of interest, how do people get around self medicating with T3, ie adding it to T4 if your endocrinologist will not prescribe but you still need to the T4 prescription - as presumably it will change how the annual bloods look? I’m just asking out of interest as I still need to see what my endocrinologists thoughts of T3 are. Thanks in advance!

[shaws Administrator]

I believe your endo will look at the cost of T3 before he considers whether or not to prescribe it. Some will do so and you might be lucky.

[A2C3 in reply to shaws]

Thank you. So if I was to self source how would I get around the change in bloods? Ie just come clean to endocrinologist that I have self sourced?

[shaws Administrator in reply to A2C3]

Yes, just be truthful and if you've found a 'sweet spot' he might agree to prescribe. Just say you were so desperate to relieve your symptoms as they were destroying your daily life and you've had advice from members on a forum, i.e. Healthunlocked Thyroiduk

[A2C3 in reply to shaws]

Brill thank you. I will see what happens at my next appointment mid Sept! Thanks!

[shaws Administrator in reply to A2C3]

I look forward to the response you will get and I hope it is positive.

[A2C3 in reply to shaws]

Well he has wanted to keep me on 125mcg T4 for 12 weeks, but after 6 I have increased to 137.5mcg myself in line with the 1.6mcg body mass advice. But likely my FT4 will be over range now as it was 21.7 (10-22) on 125mcg T4, I really wanted T4 to work alone so will see where I am at in Sept I suppose!

[shaws Administrator in reply to A2C3]

Just be honest with him and tell him you are were so desperate and symptomatic that you increased dose.

[A2C3 in reply to shaws]

Yeah I will do I think! I am starting to doubt my remaining symptoms are thyroid related sometimes....

[shaws Administrator in reply to A2C3]

Just tick off your symptoms that are on the following link and you can show him at your next appointment. He may be sympathetic

thyroiduk.org/if-you-are-un...

[A2C3 in reply to shaws]

Thanks! I think there might also be overlap of symptoms related to my menstrual cycle, muscle and joint mainly! Ticking off the list is a great idea thanks x

[SeasideSusie Remembering]

A2C3

I would be very wary of telling any medical professional that you have been talking to people on an internet forum. They will ridicule it.

Much more preferable would be to say that you have been in touch with ThyroidUK, the thyroid charity that is recommended by the NHS as a source of information on thyroid conditions, and they have suggested..........

[A2C3 in reply to SeasideSusie]

Yeah that sounds more acceptable for my endocrinologist thanks very much. 😀

[SilverAvocado]

A2C3,

It can also be an option not to tell your endocrinologist at all that you self medicate.

I would be inclined to at least wait until you're very confident that you've had an improvement and plan to continue long term, because if you present it more as a discussion point / work in progress you may be vulnerable to arguments like "I told you you didn't need T3, and the fact you haven't seen clear improvement is the proof of that", etc, etc. It could easily take 6 months or more to get to the point where you feel sure enough to fight to keep it.

About the changes you'll see in your blood tests when you add T3: of course your freeT3 will raise as it indicated how much T3 is in your blood. The impact on freeT4 and TSH are a bit more subtle. Your freeT4 may lower even if you don't reduce the T4 dose, as this is just a thing that can happen when adding T3. Your TSH may lower as taking T3 has a stronger effect on pushing it down than taking T4, so it's also more likely to be suppressed below the range, which many people need anyway in order to feel well.

The question of whether your Endo will be able to detect these changes and figure out what they're caused by is a judgement call you can make. Many people on this forum would be able to identify what is going on very easily, but doctors usually give the results a much more shallow analysis.

If your Endo doesn't routinely test freeT3, then the signs will be very subtle, and I doubt anyone would be able to work out the changes were due to adding T3 to your dose, and the amount of change may be less than you'd usually expect things to change over a year, anyway, if the tests are only annual.

If they do test freeT3 there will be a clearer change to see. Though it still might not be huge. You'll be aiming to get your freeT3 into the top third of the range or so. If it's something like halfway up now the difference won't be massive. If your freeT3 is currently low and your Endo is telling you that doesn't matter and they're not going to add T3, then they might not see the significance of a raised freeT3 anyway, and be happy to shrug it off.

Overall I think there is a good chance the Endo won't notice the difference in your blood tests, even if they look quite difference. As I write this I've just realised you could even cheat the tests a little by leaving a longer gap between your last T3 dose and the blood draw, which will reduce the freeT3. But even if you don't do something like that, doctors tend to be checking your tests for just a handful of different indicators, they won't be doing a full analysis considering the relationship between all three numbers and comparison with your older tests.

I don't think you're forced to tell, and it's a difficult judgement to make on how understanding and open minded the doctor is. The default position most doctors will have is to strongly oppose self medication, and even if they personally feel it's a good idea for you they may feel they have to condemn you because otherwise their job is in danger.

Maybe you could start more gently by saying things like that you've heard some people can get prescribed T3 privately, or buy their own T3 from overseas, and do they think you'd be helped by something like that? Then only if you get a positive result from dropping hints go on to actually tell them.

[A2C3 in reply to SilverAvocado]

This is so so helpful thank you very much for taking the time to share all of this. My endocrinologist asks for FT3 results which I get through my GP. At the mo my Results are on 125mcg.

FT4 97.50%

FT3 59.46%

TSH 0.13 ml/L (0.3-4.5)

FT4 21.7 pmol/L (10-22)

FT3 5.3 pmol/L (3.1-6.8)

I have upped T4 slightly by 12.5mcg for the last two weeks, but since lost some weight so my weight dose should be 125mcg. I will test after 6 weeks then maybe ask endocrinologist if he will consider adding T3 to try to get it up the range a bit? Or would you suggest trying it myself first then asking him? Would I stay on the 125mcg and add T3 on top?

I didn’t realise the blood changes would be so subtle good to know!

[SilverAvocado in reply to A2C3]

These thyroid panel results are getting quite close to ideal looking. Which doesn't mean you will necessarily feel ideal, but if you are lucky could mean you're getting close.

Your freeT4 is high in the range, but not all the way to the top, so you've got a little room to increase that. Some people need freeT4 all the way at the top of the range or even slightly over to make enough T3.

T4 is the storage hormone, so our bodies have to convert it into the active form of T3 to use it. Your freeT3 is actually not too bad , so you don't have a convertion problem.

These are not results that classically scream out that you need T3. You may get to where you need to be just by increasing T4 a bit more. Loads of people do just fine on T4 only. But symptoms are more important than test results, so if you still feel unwell and have symptoms you may want to try it. I would continue increasing T4 until it is slightly over before messing with T3, though.

Possibly a standard 25mcg increase would have been fine, but depends how cautious you want to be. You can always backtrack if it ends up being too much.

With T3 you will definitely want to start low as you are almost there, and some people get big changes in freeT3 with a fairly small dose. And definitely decrease T4 by an equivalent amount, T3 is roughly 4x as potent as T4, so if you add 2.5mcg of T3, reduce by 10mcg of T4. You may end up having to round up or down depending on pill sizes, but get yourself a good cutter.

[A2C3 in reply to SilverAvocado]

Yeah I really want to try a T4 increase before T3, I have increased to 137.5mcg myself 2 weeks ago and I will test in 4 weeks time. I am still getting joint and muscle pain and can’t tolerate exercise. Do you think a 150mcg dose would help? Does it matter how much T4 is over range to try to get T3 higher? As this is my preferred route to be honest.

[SilverAvocado in reply to A2C3]

The only way to know if 150mcg would work is to try it. Although base the choice on how your blood tests have changed with previous increases, but more importantly how your symptoms have changed on previous increases.

I am a person who actually takes my freeT3 over range, so I can't really tell anyone else not to go over range with anything.

I think the biggest justification to do it is if you've been feeling improvements in symptoms at each dose increase and you continue to feel improvements. The point where you need to be more concerned about going over is if youve increased but haven't felt any improvement.

The other thing to bear in mind is that thyroid illness is a serious disease, and thyroid hormone replacement is never going to be as good as our own hormone, so I'm not sure many people get back to 100% of where they were before they got sick ( or maybe where they see their able bodied friends being). I've read the forum for years and one thing I always try to figure out is how well people are once they get on a good dose. I suspect 80% is more what we can expect, and exercise is one of those big things not everyone gets back to, because of course it's the most physically demanding thing you can do.

[A2C3 in reply to SilverAvocado]

Yeah I have had improvements at each increase and I would really like T4 only to work even if my fT4 is over range to try increase my fT3 I might ask endo for an increase to 150mcg then see how I feel after that. My only symptoms left are those I’ve mentioned above.

Do you think my conversion looks okay?

Are there any implications of over range FT4?

Yeah I was worried that I might not get back to 100% and I really just want to be able to walk comfortably and do the shopping without my tendons and muscles feeling so sore 🤞🏻

Thanks for all your help so far.