Thyroid UK
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Looks like I'm on my own again :-(

3 weeks into my trial of T3 (5mcg twice a day) added to reduced T4 (75mcg per day) and I am feeling worse than ever, the fatigue is just all consuming and I have to take a daily nap. So I wrote to my private endo for advice and this was his reply:

Thank you. As you have benefitted from neither a higher dose of Levothyroxine nor a combination of both Levothyroxine and Liothyronine, and indeed are worse with the combination treatment, you should revert to your original dose of Levothyroxine of 75 ug daily. The only interpretation is that your troublesome symptoms cannot be attributable to your thyroid disease or to its treatment. I will write to your GP. I am sorry not to be more helpful but it is important to have excluded your thyroid from the equation.

Don't know what to do now, if I go back to the original dose I know I will just feel rubbish.

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Syd35

Exactly what I predicted when I replied to your previous post healthunlocked.com/thyroidu... with this comment

I think your endo should not have reduced your Levo. I do wonder if he is setting you up to fail this trial. You will say you feel worse, he can say that obviously T3 is not helping you, trial over. But he won't take into consideration where your levels are.

You may be better off doing what many of us here do in similar situations. Accept your prescription for as much Levo as you can get, buy your own T3, work out your own dose of each by trial and error and regular private blood testing.

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Thanks Susie, yes you've been in this game long enough to guess the outcome, I always value your advice! Extremely disappointed after really pushing to trial the T3 but now thinking I might be better off going back to Levo alone after how rough I've been feeling during the trial.

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But I think you ended up feeling rough because your levo was reduced - from 100mcg/125mcg on alternate days - to 75mcg. The addition of such a small dose of T3 when your levo had been reduced so much was never going to work. I agree with SeasideSusie. You were set up to fail. Makes me angry on your behalf. :(

OK. What are your ferritin, B12, folate and Vit D levels looking like?

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Thanks Jazzw - wonder why they would set people up to fail, especially as I went private and was paying for the T3 myself?

All my levels are on the low side but supplementing as per advice from Seaside Susie, just getting them retested is the problem.

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Susie is spot on with her advice and I really do not know how these doctors manage to get to a 'position' in which he/she is supposed to be 'experts' at endocrinology and in fact leave their patients high and dry with more symptoms than before being diagnosed.

Endocrinologists have no clue. I have read that combination T3/T4 should be on a 1 to 3 basis. i.e. 25mcg T3 to 75mcg (or whatever combination dose makes a patient well).

What is the point of wasting or time and effort and hope against hope that we will be seeing a 'Professional' who knows exactly where the thyroid gland is in our body. :) Also they should know the purpose of the need for thyroid hormones to be at an optimal - not just somewhere in the range. First and foremost should be alleviation of all clinical symptoms.

Don't go back onto levo yet as Susie has predicted properly i.e. Endo didn't care about you - he wanted not to prescribe T3 at all (as they've been told to) so he's not interested in the welfare of the patient. You can source your own T3 and add some to the dose Endo has prescribed. They appear to love to say 'I told you so'. Many research teams have stated that most do well on a combination of T3/T4. I don't know how much levo he reduced but 10mcg of T3 is around 30mcg of T4. 75mcg is not a high dose and one of our deceased doctors stated that we used to be given NDT and doses (in their effect) were between 200 and 400mcg. Some even needed a higher dose. NHS restricts us to 'within the TSH, even the high end of the range).

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As you have Hashimoto's are you on strictly gluten free diet?

What are your levels of vitamin D, folate, ferritin and B12 like? Do you supplement to keep optimal

What was your TSH and FT4 when on 112mcg alone?

Three weeks is far too soon to assess progress on new combined dose.

You need to stick it out for 6 weeks and then get tested. It can be tough getting use to. It can be better and worse in equal measure while adjusting.

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Thanks SlowDragon, I was wanting him to say that 3 weeks hasn't been long enough but he just pulled the plug on the trial. I did think I should have felt at least some improvement in that time though?

Yes Hashi's, not strictly gluten free yet, all those levels could be better have been supplementing following Seaside Susie's advice.

TSH was 0.68 (0.55-4.78) T4 was 18 (10-25) and T3 4.9 (4-7).

Now I've trialled T3 I can actually say I felt better on the T4 dose even though not 100%.

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If you can manage to stick on this dose for another 3 weeks then get bloods tested.

All thyroid tests should ideally be done as early as possible in morning and fasting. When testing with Levothyroxine, don't take in the 24 hours prior to test, and on T3 don't take in 12 hours prior to test, delay and take both straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

You may find FT4 has dropped below range, as dose has been dropped a lot. This may be making you feel grim. May need to slowly increase T4. But try to hang on and get tested first

Vitamins do need to be optimal and likely you need to be absolutely strictly gluten free

Almost gluten free doesn't work as outlined here

chriskresser.com/the-gluten...

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Great information. Just to clarify, this affects people who are taking mega doses of biotin (30mg) versus those just taking a multivitamin, which might contain only 30mcg, is that correct?

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Really not recommended to take multivitamins with thyroid condition. Likely to contain too little of what we need, plus stuff you don't want (eg iodine )

drknews.com/iodine-and-hash...

Plus if it has iron in makes it difficult to absorb anything

Personally, the cost of private blood tests being so high I would stop anything with B vitamins in 3-5 days before

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I have been self medicating with t3 and did not reduce my Levo. My ft4 was high but within range but my ft3 was a little lower than yours, at 4.5 (in similar range). On the basis my ft4 was unlikely to increase from adding in liothyronine and there was a lot of band to build my ft3 I decided to keep Levo at 150mcg. I also found that adding liothyronine in split doses made me feel more tired so I take everything together in the middle of the night.

I agree with the other comments, your endo is not supporting you. Well done on getting the trial though, my GP didn't even think liothyronine was an NHS available drug when I asked!

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Wonder if I should try dosing in the night do you set an alarm specifically to take your meds?

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No I don't need an alarm as I always wake up during the night. I typically take it around 2am but on occasions I wake up later, around 4am. You may need to try an alarm if you sleep through the night (very lucky!) and taking in the middle of the night helps with taking away from food, drinks and supplements and it also is consistent with the circadian rhythm as I believe tsh is the highest at night to stimulate hormone production when we are asleep.

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No such luck i am awake a few times a night most nights :-(

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From my experience 3 weeks on T3 didn't even begin to have an impact on symptoms, I thought any self respecting medic should understand that! They don't...or much else about thyroid conditions

Recovery is a long slow process but you will get there by following the top notch advice you're being given here. Stick with us!

I now self medicate T4/T3 (all at bedtime) and my understanding GP continues to prescribe levo - she is no longer allowed to test or prescribe T3! Madness rules!

I don't think I've yet reached optimum dosage but my next (private) blood test, plus any symptoms, will determine any change. I certainly am beginning to improve now....after many long years of poor health

I don't feel able to advise but I do offer encouragement because I certainly appreciated that, along with brilliant advice from members here

Good luck

Best...

DD

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That's not correct, if your GP wishes to prescribe, they can. T3 is not banned.

What is your local CCG policy on Liothyronine?

Even if your local CCG advise GP they would rather it wasn't prescribed, if your GP deems you have clinical need they can prescribe.

Clear legal outline

healthunlocked.com/thyroidu...

Debate in the House of Commons this week

theyworkforyou.com/debates/...

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I was told the healthboard declined my request hence going down the self-funding route via private endo. So much conflicting advice out there my head is in a spin.

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I'm in Scotland SlowDragon

T3 tests were cut in Jan by local Health Board, my GP managed to get one for me at the last minute. As for T3....like getting blood out of a stone..

One GP (also a thyroid patient) was told, "No, it's just a rip off", by an endo....so her levo was cut instead!! The "rip off" bit is true but what about the poor patient! I would probably be dead before a T3 offer happened!!. So, less stressful to buy it and self med with TUK advice. My own excellent GP, not the one mentioned earlier, is ok with this, she understands, unlike many others!

Been following the debates....both H of C and Holyrood. Fingers crossed...so much work has gone into this.

Just done a thyroid genetic test...probably more for my own interest than with any expectation of it's acceptance by medics or, of any leverage on chance of a T3 prescription.

As ever SD, huge thanks for your support

Best...

DD

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Scotland here too DippyDame, find it hard to get FT3 tested too.

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I use private tests from Blue Horizon...on advice from here.

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beta.gov.scot/publications/...

Might be of interest!

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You will need to get private testing thyroid and vitamins. Essential to test FT3

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 ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. (Juggle last dose to be 12 hours before) This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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I have heterozygous DIO2 and found it helpful in turning my NHS "trial" of T3 into permanent prescription (so far).

Presumably you have seen this....but if not might be helpful

scottishparliament.tv/meeti...

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Thanks SD...yes, I've seen it...it's incredible though how the law I is often manipulated/circumvented/ignored! Hopefully the efforts of all the amazing thyro-warriors will eventually bear fruit.

The NHS and an amazing heart surgeon saved my then dying 8 week old grandson ...so there is NO valid reason for the perilous nature of thyroid care! There should be no hiding place for negligent medics!

Sorry...just had to get that off my chest!

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Thanks for the encouraging message. Oh no have I shot myself in the foot now with my impatience as that's trial over as far as my endo is concerned. I still have enough T3 to last a few more weeks do I keep at it until next bloods and explain I was too hasty? So messes with your head in the quest to feel well again doesn't it! How long did you persevere on T3 till you felt the benefit?

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It took about 3 months before I could confidently say I was beginning to improve. In my case I'm 72 and seem to have been suffering from decades of poor conversion/wrong medication so I guess recovery will take longer too....your time scale is, I guess, different!

If it was me I would continue with the added T3 and have a blood test about 6 weeks after starting. Post those results here and you will receive good advice on how to progress. However, you may prefer to ask Slow Dragon et al for their hugely better informed advice on this.

I'm afraid recovery requires time, much reading, lots of questions on here and patience and determination by the bucket load, some self confidence...and most importantly, close attention to advice offered here. I was told "there is no quick fix" and that helped keep me going!

You can do it....lots of us have!

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I don't think 3 weeks is long enough either. I took T3 Combination gradually reducing T4 and upping T3 for months before going on to T3 alone. I felt worse for months! Have you enough medication to keep trying?

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Interesting MaryMary, only have a few weeks of T3 left, suppose I can try and source overseas like alot of us on this forum.

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