Help!

[MissFG]

Just seen my GP and based on what the CCG have said he has a duty of care to look after me as long as I take a UK licensed thyroid drug ie levothyroxine.

So I saw him today hoping I could just introduce a small amount. Wishful thinking! He insisted I came off T3 as he has no specialist knowledge to look after me and move over to levothyroxine. I have to contact my Endo (whose discharged me as he can’t prescribe T3 to me) to advise my GP what dosage to start me on etc

Firstly I agreed, with no intention of coming off T3. What I need is advice on how to continue taking my T3 but introduce levo (reducing T3) to stay within my TSH, FT3 and FT4 ranges, without my GP knowing I’m still self medicating.

This means I can continue to get my bloods done as and when I need to in order to monitor my levels myself. I don’t see why I should have to pay privately for my bloods and besides I can’t afford it!

My recent ultrasound shows I still have active thyroiditis and my antibodies today were 338. So until I know they are within range and I have it under control (nearly there 🤞🏽) id like to remain under the care of my GP.

Don’t get me wrong my GP is supportive but as he says he has a mortgage and kids so isn’t competent to look after me taking T3.

[SeasideSusie Remembering]

MissFG

If you take T3 it's very likely your TSH will remain below range. Mine was always suppressed even on just Levo, it's still suppressed on a combination of Levo and T3, I can't get it back into range.

[MissFG in reply to SeasideSusie]

Thank you

[greygoose]

What I need is advice on how to continue taking my T3 but introduce levo (reducing T3) to stay within my TSH, FT3 and FT4 ranges, without my GP knowing I’m still self medicating.

I would say that's pretty much impossible. If you're going to take enough T3 to make you well, then the odds are that your TSH is going to be suppressed. If your doctor is obsessed with the TSH, then he's going to want to keep reducing your levo, and will be wondering why your TSH is still suppressed. So, if he's got a brain, he'll guess.

My recent ultrasound shows I still have active thyroiditis and my antibodies today were 338. So until I know they are within range and I have it under control (nearly there 🤞🏽)

And, this is the reason you need your TSH suppressed, to control your Hashi's. But, be aware, that even if you manage to get rid of all your antibodies, you will still have Hashi's. The antibodies are not the disease. And, as long as the TSH continues to try and stimulate the thyroid into life, it will continue to stimulate the immune system to attack. Keeping the TSH suppressed, evens out the swings from hypo to 'hyper', and back. With or without antibodies.

[MissFG in reply to greygoose]

As SeasideSusie said though couldn’t my TSH be suppressed on T4 only?

Tbh I don’t think I’ll get away with it. But there’s no way I’m coming off T3 as I was so sick on levothyroxine only.

I was just hoping to reintroduce T4 and use T3 to top up my FT3 where I don’t convert well.

I didn’t know that even with low antibodies I’ll always have active hashimotos! Bit gutted to say the least. Can anyone ever go into remission with hashimotos? I’m feeling the best I’ve felt in over 2 years. Still got room to improve but on the right track just hoped I’d be able to heal both my immune system and thyroid eventually

[greygoose in reply to MissFG]

I was just hoping to reintroduce T4 and use T3 to top up my FT3 where I don’t convert well.

I'm afraid it doesn't work like that. If you're taking T3, your FT4 will be lower, so not as much to convert. And, I imagine you're a poor converter, anyway.

Yes, TSH can be suppressed on T4 only - mine always was. But, then, doctors just keep reducing your T4. If you're also taking T3, reducing the T4 is not going to raise the TSH. But, the main thing is that it's highly unlikely you will be able to get enough hormone into you and still keep the TSH in range. As I said, it just doesn't work like that, but doctors have no idea!

You can go into remission with Hashi's, yes. And that's when people think they're 'cured'. But it's still there. And can come back at any time. And you may be able to heal your immune system, I don't know, no-one has ever proved to me that it's actually possible. But, you can never heal the damage done to your thyroid. It will always be under-active, now.

[MissFG in reply to greygoose]

Thank Greygoose.

I’ve heard some have survived on no meds with half a thyroid after surgery how is this possible?

My FT4 is low so my thyroid must still be producing some hormone. Yes I’m a poor convertor but could improving my diet, supplementing etc have improved this now? So if I went into levo I might convert better now than I did before?

However I’m now going to go to my MP for help. I’m in a catch 22. I don’t want to self medicate I want my Endo to supply me with T3 and look after me. But because he won’t prescribe it I have to self medicate as I can’t afford £450 a month, and therefore no one will monitor me! Surely my GP can’t refuse me levothyroxine? Yet if he prescribes it he has to look after me as far as the CCG are concerned. But he himself can refuse to do then it would be finding a GP who would I just can’t win

[greygoose in reply to MissFG]

Survive is not the same as living. It depends on how much their half thyroid is capable of producing. And the remaining half will increase in size to make more hormone. And, I think, a lot more people with half a thyroid need thyroid hormone replacement, than doctors are willing to admit!

I don't know if your thyroid is producing some hormone - I thought you were taking T4 as well as T3 - but, in any case, I doubt it's capable of making enough hormone, or you wouldn't have been put on thyroid hormone replacement in the first place.

There are many, many reasons for poor conversion. Increasing your nutrient levels may have helped, but it could be that that wasn't even the problem in the first place. You will only find out by trying levo on its own, again.

I cannot answer questions about your doctor's treatment policy, I don't even live in the UK. That is something you have to take up with him. But, it sounds as if he's saying that it's illegal for him to monitor you whilst you self-treat, which it certainly isn't! I think he's just being difficult because he doesn't approve of either self-treating and/or T3. I don't know. But, he obviously doesn't know much about thyroid, or we wouldn't be having all this to-do about a suppressed TSH in the first place!

[Tasker]

Hi MissFG. Just to comment in one part of your post, you say you'd like to be under your GP's care because "This means I can continue to get my bloods done as and when I need to in order to monitor my levels myself." In my experience, that's not the case I'm afraid. Under the NHS we can have blood tests as and when our doctors think we need them, which may not be as often as we might like to have them for self monitoring. Also, NHS blood tests will usually just be TSH and T4, not T3 or antibodies. I hope you find a way to be under your GP's care if that's what you want, but you might find you still need to have some private blood tests to properly monitor your progress.

[MissFG in reply to Tasker]

For the past two years my experience is that I have my bloods done when I book in no question and I always have my TSH FT3 and FT4. I have also had my antibodies tested when I’ve requested this usually annually so I can see if they’re lowering.

I know I’ve been fortunate that this hasn’t been questioned by my surgery. But obviously I’d like this to continue and the only way this would happen is if I go on levo only which would make me ill and put my recovery back to where I began.

[Tasker in reply to MissFG]

Okay; now I understand where you are coming from. That does sound very unusual compared to the experience of many here and I hope you can find a way for it to continue!

[MissFG in reply to Tasker]

Thank you sometimes it pays to be pushy 😂

[silverfox7]

Well done at getting your full bloods done.

[MissFG in reply to silverfox7]

Thanks great while it lasted!