Coming off T3

[Vic198]

Hi. I was diagnosed with hashimotos 17 years ago. I did fairly well on thyroxine until I had my children 9 years ago. Two years ago, against the advice of my GP I decided to self medicate with T3 (tiromel) as I was feeling progressively worse on T4 alone. With the support of the community on here I managed to increase my T3 dose to 37.5mcg and was also taking 75mcg of thyroxine. I also supplement B vitamins and vitamin D as I was quite deficient in both.

Earlier this year I went to see my GP as I was having a brief bad spell of blurred vision, fatigue, twitching muscles and low mood and she referred me to an endocrinologist. I was seen back in May for the first time since diagnosis. As expected the whole appointment was focused on taking me off the T3. I was told to immediately stop it as apparently I was over medicated and unstable and I was risking osteoporosis and atrial fibrillation. I was told to drop my dose to 100mcg levothyroxine. My results at the time were TSH <0.01, FT3 3.9 (2.6-5.7), FT4 9.1 (9-19). I was feeling fairly well at the time of the consultation. My pulse was raised on the day as I was anxious about what the endo would actually say. The endo said that there is no research that proves that T3 is beneficial in treatment. He did send me multiple links to prove his case.

I spent some time considering whether to get a second private opinion or whether to follow the advice of the endo. The endo said that I could test my levels every 4 weeks after dropping my dose and that if down the road I am still unwell and the bloods prove that it is linked to my thyroid then they could consider alternative medication. I have a follow up at the end of November.

Two weeks ago i came to the end of my pack of T3 and as my new pack had been lost in the post I decided to trial coming off it as advised by the endo. The first week I experienced extreme fatigue every morning and this week has been progressively worse. I feel totally spaced out and like everything is surreal. My legs don't seem to be functioning properly, i am emotional and tearful and my muscles are twitching. It just demonstrates how well i was on the T3. I increased my thyroxine to 125mcg last night but I do not know how long I can function like this.

My biggest concern is that I didn't feel safe self medicating. Although I felt hugely better in my body and mind, I was still nervous about making my own decisions on my dose and about going against the advice of my GP. I don't feel like I can even talk to my GP now as they have clearly told me to stop self medicating and they don't approve of my actions. I cannot really afford to be under the regular supervision of a private endo but now I am not sure what to do.

Any hope of getting good treatment that works for me on the NHS seems either a long way off or impossible as I am not convinced my blood work will demonstrate that my body doesn't agree with thyroxine alone.

Does anyone have any advice. Shall I persevere with the withdrawal, as I have only given it two weeks, or should I go and see a private endo who may be more open minded.

I really wish there wasn't this terrible lack of care for thyroid patients in the UK. I am only in my 30s and should be full of energy but sadly that is not the case. I do look after myself, cycle 6 miles most days and like to run, but I am always tired.

Thanks for your continued support.

[greygoose]

'if down the road I am still unwell and the bloods prove that it is linked to my thyroid then they could consider alternative medication'

Do you know what 'alternative medication' he was referring to? Apart for T3/NDT, I don't see what else there is.

'He did send me multiple links to prove his case.'

Did he? That's amazing! Do you still have the links, because I would love to read them. Were you convinced by them? Did they explain why the body would make a hormone that is going to give you osteoporosis and heart attacks? That's rather remiss of Mother Nature to do that, don't you think?

Myself, I wouldn't believe a word of it! I don't understand their motives, given that you were buying your own T3, so it can't be the cost, which is what we usually think. Perhaps they are genuinely taken in by all this guff! I've been on quite a high dose of T3 only for years - because any form of T4 made me so ill - and so far, as far as I know, I don't have osteoporosis, and I haven't had a heart attack (fingers crossed and touch wood! lol). And, nobody is going to ever take my T3 away from me - they would have to prise it out of my dead hands! So, that's my opinion, and I'm sticking to it!

[Vic198 in reply to greygoose]

Thanks for your reply. The links that I was sent in my letter from the endo were:

ncbi.nlm.nih.gov/m/pubmed/1...

ncbi.nlm.nih.gov/m/pubmed/1...

ncbi.nlm.nih.gov/m/pubmed/1...

Very dated and not terribly convincing at all.

The aim of the endo following my appointment is to get my T4 level in the upper half of the range and my TSH in the lower half of the normal range. I am pretty sure I don't convert so those are pretty irrelevant markers for me.

No alternative treatments were specifically discussed, just the endo saying that if I still have symptoms on T4 alone and my bloods are in the normal range then we should assume that they are not linked to the thyroid!

This test has just reminded me how unwell I was before T3 and how I should probably get straight back onto it.

Where did you do all your research into this? Were there any particular resources that were invaluable?

Thanks again 😀

[humanbean in reply to Vic198]

diogenes helvella I wondered what you thought of the links in the previous post?

[helvella in reply to humanbean]

The first one uses so few subjects it is hardly worth having done.

Second one is a metastudy of existing poorly designed studies.

The third one uses a static, direct replacement which is likely the wrong proportion for many.

[humanbean in reply to helvella]

Thanks helvella.

[diogenes Remembering in reply to humanbean]

Each and every one of the studies either denying value in T4/T3 combination versus T4 only, and those asserting that osteoporosis and AF are inextricably linked to suppressed TSH are not worth the paper they are written on. The combination studies cannot distinguish the minority that would benefit from combination therapy, simply because that minority is statistically swamped out by the majority's indifference or hostility to the treatment. The OP/AF studies are fatally confounded because the patient content was a mixture of people on T4, not on T4, and probably even included hyperthyroid subjects or those truly overdosed. TSH was often the only marker studied and certainly not FT3. In both cases you cannot proceed analysing a mixture of subjects like that, because the statistical analysis is not up to the job of distinguishing one group from another - they are all lumped into one great amorphous panel with many different outcomes and health levels. In fact, we should always be aware that exactly the same values for thyroid parameters can mean very different things for two individuals. Multiply that over a large number of people and you can see the problem.

[humanbean in reply to diogenes]

Thanks diogenes.

[greygoose in reply to Vic198]

Thank you. I'll read those links later.

'No alternative treatments were specifically discussed, just the endo saying that if I still have symptoms on T4 alone and my bloods are in the normal range then we should assume that they are not linked to the thyroid!'

Oh, the age-old get-out clause! Did he say if the FT3 is included in those 'bloods'? Does he really have no idea that just being anywhere in the range is not good enough because the ranges are too wide, and 'in-range' is not the same as 'optimal'? This endo sounds like the average dead-loss, to me.

For the past ten + years I have been reading anywhere and everywhere, anything I can get my hands on. Nothing sticks out in my mind as being essential reading. Although for good basic grounding, I would recommend Mary Shomon's Living Well with Hypothyroidism, followed by Broda Barnes' Hypothyroidism: The Unsuspected Illness.

[Vic198 in reply to greygoose]

Thanks. They sound great and I haven't read either yet. He didn't mention FT3 at all in my appointment. I tried to explain about it but he was clearly focused on just getting me off T3.

[greygoose in reply to Vic198]

Yes, I expect he was. It's the latest fashion. Can't have patients getting well, can we! Well, you know what? You don't need him. In fact, you'd probably be healthier without him! Just tell him to take a hike.

[kipper2 in reply to Vic198]

Hello,

I am so sorry that you are being treated this by the people we look to to help us. It that occurs to me is that with all these random people they use for their T4/T3 tests there never appears to be any effort before hand to test if they can convert T4 to T3 if they are good converters anyway they don't need additional T3. They should at least have some poor converters in there or their tests prove nothing and are worthless.

[Clutter]

Vic198,

You weren't overmedicated just because TSH was suppressed <0.01. I think you were undermedicated because FT3 was low in range.

My advice is to think about what makes you feel well. If it is 125mcg Levothyroxine then fine, stick with it. If it was Levothyroxine + 37.5mcg Tiromel then continue taking it but consider 100mcg Levothyroxine. You don't need your GP or endo's approval or permission. Your wellbeing is more important than pleasing your GP or endo.

Not sure why you need a private endo either. Tiromel isn't prescribed in the UK but you can buy it online without a prescription. You can order private thyroid tests via thyroiduk.org.uk/tuk/testin... As long as you keep FT3 within range you won't be overmedicated.

[Vic198 in reply to Clutter]

Thanks for your reply clutter. You are also so helpful.

I agree that I should listen to my body. It certainly wasn't well before T3 and it isn't happy now I've come off it. I am just still uneasy about treating myself. Guess there's isn't much alternative really.

Do you think I am safe to go straight back in my T3 dose of 37.5mcg after 2 1/2 weeks off or should I build up again.

Tiromel is the first alternative treatment I have tried and it seems good. I wonder if it's worth trialling other treatments to see if there is further improvement or sticking with it if it works?

Thanks 😀

[Clutter in reply to Vic198]

Vic198,

I think it will be fine to resume 37.5mcg T3 but I would drop Levothyroxine back to 100mcg.

I don't believe in fixing what ain't broke so since I'm well on T4+T3 I've stuck with it and I've not tried NDT.

[Vic198 in reply to Clutter]

Fantastic, thank you. Really appreciate it 😀

[Vic198]

Thanks everyone. Your replies have been fantastic and I am now back on the T3 and determined to read more myself to make sure I am fully informed. The information about those articles I posted was very helpful. I will probably just cancel my follow up NHS appointment 😀

[fortunata]

I agree with everything Grey Goose says. I self-medicated with T3 for three years until I finally managed to get an endocrinologist to prescribe me 60mcgs a day. Levothyroxine made

me feel dreadfully ill but Liothyronine has given me my life back.

[diogenes Remembering]

Let's be very clear. Patients on stable thyroid hormone therapy for a considerable period cannot simply switch drastically to another regime and react favourably just like that. If on T3, the body's conversion mechanism has been switched down to avoid too much T4 conversion if that's supplied as well. The idea that this switch can be instantly uplifted by substituting T4 only is grossly naive and unphysiological. For a given regime, the body settles down to a way of working suitable for that regime and trying to get things reversed is a longdrawnout slow affair, even if it is possible at all. The longer the particular regime has been in place, the more resistant is the body to readjusting to something drastically new (like switching T3/T4 combination or T3 alone to T4 only). The biological reason is that the way the body reads out and controls its genes gets altered, and reversing this is really difficult. Its called epigenetics.