Have I been started off on too low a dose of T3?

[Syd35]

I posted the other day about feeling initially good when starting T3 at 5mcg twice a day alongside reduced Levo 75mcg per day.

Into my second week now and maybe being impatient but have only had two days of feeling good / normal, the other days have been full of fatigue, aches and pains and I seem to have gained a couple of pounds. Feeling disheartened as was really hoping T3 would help.

I am wondering if I need more T3 or whether I should just go back to Levo only as I would say I feel about the same if not slightly more fatigued on this T3/T4 combo. Still got another 5 weeks to go of this trial but the way it's going I feel like giving up on it. Really don't know what to do and feeling down today, would be grateful for any suggestions.

[SeasideSusie Remembering]

Syd

As I said in your previous post, with an FT4 - 18 (10-25) you should not have had your Levo reduced. It was just very slightly over half way through range. Your Levo was reduced which will lower FT4, and taking T3 tends to lower T4 anyway. You may be like me and need your FT4 at a certain level when taking T3, I feel best when my FT4 is around 75% through range and FT3 a touch higher.

[Syd35 in reply to SeasideSusie]

Thanks Susie, why do they recommend reducing Levo alongside T3? So would I be safe to go back to my 100/125mcg alternate days Levo alongside the T3 or wait till next bloods are done? That's if I can carry on feeling this way till then...

[SeasideSusie Remembering in reply to Syd35]

Syd

I believe a lot of endos don't really know what they're doing when it comes to T3.

Were you dropped from 100/125 (averaging 112.5mcg daily) to 75mcg?

When I added T3 to Levo (I do it myself, not under an endo), my FT4 was well over range at 28.59 (12-22) and I reduced Levo by 25mcg, a week or so later I added 6.25mcg T3, and continued, over a period of time, to gradually reduce Levo and increase T3 until I found what appears to be the right balance for me.

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.

When are your next blood tests due? There's no point changing your dose now and retesting less than 6 weeks later, your levels won't have had time to stabilise so won't truly reflect the dose you're taking. I have found that I need 8 weeks for my levels to stabilise and feel the full effects of changing dose.

[shaws in reply to Syd35]

That's what they seem to have been taught, and being completely unaware that 100mcg of levo isn't particularly high. They seem to only look at a TSH result, and if it is low, reduce our thyroid hormones. When in fact, we need a TSH of around 1 or lower with Free 4 and Free T3 in the upper part of the ranges. The latter two are rarely tested but are very informative. Look for the info on this link.

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

Once you realise that most on this forum, yourself included, know more than Endocrinologists/doctors you can recover.

[Syd35]

Hi yes was dropped down to 75mcg from 100/125mcg alternate days. Why would they set you up to fail especially as I'm having to pay for the T3 myself? Next bloods are about 5 weeks away, I understand about not changing dose so do I just continue on same dose even though feeling rubbish?

Sounds like you have done better taking matters into your own hands, after all the patient must know how they are feeling better than a doctor. Did it take you long to find the best dose for yourself?

[SeasideSusie Remembering in reply to Syd35]

Syd

They just don't want to admit T3 is needed, it opens up the door for more people to ask for it on the NHS. If they can say it doesn't work then it is easier to refuse to consider it. But bottom line is they really don't understand well enough how to treat hypothyroidism.

Can you push back your next test, say another couple of weeks? If so then you could raise your Levo dose and see how that goes. But of course you would then have to explain to your endo what you've done and why. There's no guarantee that you will be like me, you may do fine with a low FT4, and it may be that as it's the start of your T3 journey then you're still on too low a dose of T3. It's all very individual and it takes time to find the right balance to feel well.

My journey has been long, 40+ years of being diagnosed hypo, 20 years of feeling unwell but no help from doctors, 2.5 years since I did a shed load of tests and discovered nutrient deficiencies, adrenal problems, low sex hormones, poor conversion. So an awful lot to address and much tweaking of doses, plus picking up a couple of other non-related health conditions which make me feel unwell, so difficult to know whether it's thyroid making me unwell or something else. I think I've now found the doses and the thyroid levels where I think my thyroid is OK, but I have my GP bleating on about my TSH is suppressed (has been for 20 years) and saying I am overmedicated, despite FT4 and FT3 being well within range so now another battle

[Syd35 in reply to SeasideSusie]

Gosh I feel bad for moaning when others have been through years of this, it also makes me despair for the future have I got to live out my life feeling under par Maybe I'm still young enough for some sort of breakthrough to be discovered, I can but hope!

Your suggestion is a good one I can easily reschedule my bloods as it's being done by my local GP and results shared with endo (private).

One last quick question if you don't mind - what are your thoughts on dosing T3 once per day as opposed to splitting over two doses during the day?

[SeasideSusie Remembering in reply to Syd35]

Syd

I have tried both - splitting dose and taking it all at once. I started 6.25mcg T3 in one dose in the morning, when I increased to 12.5mcg I split morning and afternoon. After a while I got fed up of having to be careful of timing, no afternoon coffee and biscuit, or delaying evening meal, etc. So I started taking it all in one dose in the morning and I felt no difference so I have stuck to just the one dose. Other people feel they need to split their dose. As with everything, it's a case of try it and see what suits you best.

[SlowDragon Administrator]

Are your vitamin D, folate, ferritin and B12 levels optimal?

Do you have Hashimoto's? If so are you on strictly gluten free diet?

[shaws]

10mcg of T3 is around 30mcg of levo (in its effect) but he's reduced your dose of levo by 75mcg! ??

[Syd35 in reply to shaws]

Sorry if I was unclear I was told to take 75mcg per day instead of 100/125mcg alternate days.

[shaws in reply to Syd35]

Thanks in a few weeks you might feel the need to increase T3 but you may not have that flexibility if you have an Endo but if you're purchasing it yourself you can tell him you've increased slightly.