No better on T3 so far: So I'm now on 2x5mg T3 in... - Thyroid UK

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No better on T3 so far

Tradoc profile image

So I'm now on 2x5mg T3 in the am and 75mg levo a day for 4 weeks and not feeling any better. Always crash around period time . I've all the symptoms of peri menopause so when I see my private endo may 21 I'm going to as him about this. I did email him and he said give t3 more time to work

I really feel like I have brain damage at this stage. Anyone else feel like they are having brain zaps,only way I can describe, no appetite and feeling like you have internal tremors . I've not been better since covid and I had a crash in Feb

*Side note*... Does anyone else bruise easily. I'm covered in them???

74 Replies

26 days ago you said you had started 3×5mcg T3 plus 75mcg levo and to date you have found no improvement....

It takes 6 to 8 weeks for the dose to settle in the body, your endo is right, you need to give it more time.

It is very frustrating... but sadly there is no quick fix.

Re test after 6/8 weeks then adjust dose as necessary.

It sounds as if an increase is required

Your symptoms sound typical of undermedication

I felt as if my brain had left my body at one point

I doubt brain damage is the problem but be aware of any changes....hopefully for the better!

Covid can upset hormone balance so that might also take time to settle.

Post your next set of results and we can then see what is going on

Just a few thoughts....take care

Tradoc profile image
Tradoc in reply to DippyDame

Thank you DippyDame Sorry I'm on 2x 5 mg. Shows ye how crap my brain is at the minute

DippyDame profile image
DippyDame in reply to Tradoc

No, don't apologise!

It was me ...sorry!

You said ×2 above

My MD eyesight is probably worse that I realise/ admit!

Must check what I write more carefully.

Anyhow...stick it out until the next test and see how that pans out

You will improve once correctly medicated!

It's a horrible disease but rediculously medics struggle with it.

Take care

shaws profile image
shawsAdministrator in reply to Tradoc

I take T3 only. I follow the advice given by a scientist/researcher/doctor and expert on T3. He was also an Adviser to Thyroiduk.

He himself took his dose one daily dose of T3 in the middle of the night when he went to the toilet. He was also an Adviser to Thyroiduk before this bad fall that caused a bleed in his brain and he died. He was an expert in the use of T3 and 'resistance to thyroid hormones'.

Dr Lowe would never prescribe levothyroxine. He prescribed either NDTs (natural dessicated thyroid hormones) or T3 only for patients who were 'resistant' to thyroid hormones..

I am well and symptom-free on one daily dose of 20 or 25mcg daily of T3 and I don't split dose and take with one glass of water when I awake and wait an hour before I eat.

I follow Dr Lowe's advice. He stated that one daily dose of T3 saturated all of our T3 receptor cells and it then sent out 'waves' throughout the day and could last up to three days.

I trialled this myself i.e. took my dose (when I awake and wait an hour before I eat dose) - took none on day 2 or day 3 and I was fine and had no symptoms,

25mcg of T3 is approx equal to 100mcg of levothyroxine (T4).

PixieElv profile image
PixieElv in reply to shaws

Hi Shaws have you got any links to Dr Lowe’s work please?

shaws profile image
shawsAdministrator in reply to PixieElv

Yes,

google.com/search?client=fi...

I respect Dr. Lowe, but my heart rate would be far too low if I only dosed once a day! I can feel it go slower when I get close to time for my next dose….. I am hoping before too long I can get by with dosing twice per day.

shaws profile image
shawsAdministrator in reply to Dancing_dragonfly

Hypothyroid patients can take their dose of thyroid hormones as they wish.

Many people 'guess' - they have to as the majority of the Endos/GPs don't understand how thyroid hormones affect the body and with T3 the heart and brain have the most receptor

On levo I had severe palpitations.

Dr Lowe stated that one daily dose of T3 saturates all of our T3 receptor cells and it sends out 'waves' for up to three days.

I trialled that and took no T3 on day 2 and day 3 and it did last. I did not develop any symptoms.

I inititally took a T3/T4 combo.

Immediately on being prescribed T3 once daily my heart rate is completely normal and I've no palpitations, I am also energetic and feel well.Should I feel unwell I would put it down to some change in production of the T3.

I feel well and have no symptoms at all. I am not trying to persuade members but stating scientific advice by a scientist/researcher/doctor.

People can do as they wish.but I have a completely normal, active life since T3. T4 was one huge nightmare. I have no symptoms and am energtic.

T3 has calmed my body completely and I feel well. If unwell and have begun a new pack, then I would think the Pharma company had changed something in the T3.

That is wonderful! You are quite lucky to have found exactly what works for your body. I agree, T4 in anything has not done my health any favors….😒. Sad it took since 1988 for me to find this out.

shaws profile image
shawsAdministrator in reply to Dancing_dragonfly

My heart rate is completely normal on T3.

On levo, during the night I had severe palpitations and cardiologist was thinking of putting and 'implant; in heart 'to see "what was going on" but just then T3 was added to T4 (levo) and I immediately felt an improvement.

I stopped T4 and remained on T3 and I've been well and symptom-free since.

Pamboz profile image
Pamboz in reply to shaws

Me too, I take my t3 at 3am and 3pm, feel well, if I get tired legs I take an extra 5mg

shaws profile image
shawsAdministrator in reply to Tradoc

25mcg of T3 is equal to around (approx) 100mcg of T4

Goldengirl01 profile image
Goldengirl01 in reply to shaws

Did you mean 100mcg t4?

shaws profile image
shawsAdministrator in reply to Goldengirl01

Thank you very much for pointing this out to me.

SlowDragon profile image
SlowDragonAdministrator

Try taking 5mcg T3 waking and 5mcg T3 approx 10 hours later

You could also try splitting your levothyroxine

Are you taking 50mcg and 25mcg tablets

Do you always get same brand levothyroxine at each prescription

Perhaps try taking 25mcg levothyroxine waking and 50mcg at bedtime

Tradoc profile image
Tradoc in reply to SlowDragon

I'm taking 75 mg tablets. I'm still feeling the same as I did before I started the T3 and I actually feel better in the evening's than the morning.He advised 5mg upon waking with the levo and eat 30mins later then another 5mg 30mins before lunch

SlowDragon profile image
SlowDragonAdministrator in reply to Tradoc

Then you have a very long gap between last dose T3 and next one

helvella profile image
helvellaAdministrator in reply to Tradoc

Thyroid hormones are usually dosed in micrograms (mcg) not milligrams (mg).

People here will understand what you mean - but it is something that could undermine you in the view of professionals you deal with. :-)

Arkenstone profile image
Arkenstone in reply to Tradoc

Hi Tradoc, sorry you are not great even after taking T3. Have you tried going off gluten? I found great improvement when I followed a hypothyroid diet. Please make sure you do not take any dairy products at least 3 hours before and after your thyroid hormones.

Agreed unless you are taking them sublingual . I give mine a couple chews with front teeth to break up and shove them under my tongue to dissolve. I can eat within the hour with no issue.

shaws profile image
shawsAdministrator in reply to Dancing_dragonfly

The molecules within thyroid hormone replacements are 'too large' to be absorbed by tongue. So maybe you aren't getting the amount you think.

Seems to work better for me than swallowing it. Many in my thyroid group use it sublingual as well. 🤔 Labs definitely show it is being absorbed and utilized.

COVID does cross the blood-brain barrier and some of what you’re describing can be the effect of cytokines in your brain.

That you feel better in the evening suggests a rhythmic aspect to your reaction to something you’re taking. I went through a long, torturous period like you are describing, and I could notice surges of ill feeling, as though tiny cellular motors were throttling back (feel better) and then surging (🤢) on a very distinct circadian rhythm.

In my case it was several things.

1. I don’t tolerate levothyroxine. It makes me sick. Interestingly, the more I was given, the paradoxical response was higher TSH.

My endocrinologist tried adding T3 to the levothyroxine and it made no difference to my suffering.

2. Brain injury saps energy and produces a surprising array of symptoms easily confused with chronic fatigue syndrome.

I’m sorry you’re having such a struggle.

Litatamon profile image
Litatamon in reply to RockyPath

"Interestingly, the more I was given, the paradoxical response was higher TSH."

With no insight from the endocrinologist on this, RockyPath?

You just weren't on enough. Starting T3 reduces T4 production and therefore is likely to raise TSH in the early days. I've had that. I'm finally seeing my TSH lower than 2 but it's taken to 60mcg T3 a day + 50 levo to have that happen.

RockyPath profile image
RockyPath in reply to Litatamon

Once he saw that the levothyroxine was converting to rT3, instead of the T3 that the pituitary was seeking, he got me off of the levothyroxine. It was an unexpected outcome. Rare.

I now take NDT.

Litatamon profile image
Litatamon in reply to RockyPath

Thank you. The first is reverse T3? And obviously it is a separate blood test.

RockyPath profile image
RockyPath in reply to Litatamon

Yes, a separate test. At first the endocrinologist said it was not worth testing. Once I had a long series of tests I'd paid for out of pocket, and he could see the trend heading into the alarm zone of above reference range, he started prescribing the rT3 test with all his patients.Interesting.

Litatamon profile image
Litatamon in reply to RockyPath

How interesting. Thank you.

Pamboz profile image
Pamboz in reply to RockyPath

That's what happened to Me the levo made high reverse t3, am great off it, only on t3

It’s so hard to determine whether it’s thyroid or menopause related. I am in the same boat. My endo doesn’t deal with menopause / HRT as that’s the gynaecologists area of expertise, so one doesn’t know what the other is doing but both are vital to our wellbeing! I’m currently trying to figure out best next steps. I had an increase in levo about a month ago so need to let that settle to see if I feel better, the gynaecologist wants to change my HRT but I feel if I do that now I won’t know which symptoms belong to which… it’s so difficult to figure! I’ve decided to be patient and work on the basis of changing one thing at a time and giving it sufficient time to work and then reassessing.

Most gynaecologists know f-all about menopause sadly. You need a menopause expert. The UK is terrible at menopause management. Look up balance-menopause.com. Brilliant UK web site by menopause expert Dr Louise Newson. The web site is full of information, podcasts, videos, patient leaflets etc. It's a great resource.

Thanks Fancypants, yes I’m familiar with Louise Newson and all I’ve learnt has been from her website and podcasts. For me it was just bad timing as I’d only recently started HRT (6 months) and had to have my thyroid removed so symptoms are all jumbled up. Still looking to get my HRT sorted as well as Levo … I agree gynaecologists are not good with menopause and my endo doesn’t want to know … comes back to what I read time after time in here, endos are predominately diabetes specialists. We land in a black hole!

I'm sorry that you have had these two major health impacts happen at the same damn time. Yes, you are struggling to work out what is doing what. But with patience you can unravel it. We have no one in the medical world willing to look across both areas of thyroid and menopause and yet it's a common incidence. Menopause brought on hypo for me and thousands more. Endos. are pretty useless it seems. I pay for one. He's lovely and is helping in many ways. But I know more about thyroid than he does now. I tell him what I want to do and he gives me the prescriptions I need. That suits me fine. He gave me a prescription for testosterone last visit because the GP won't prescribe it and the clinic charges such a big dispensing fee. This patch it together ourselves method seems to be the best we hypo women can expect.

Yes I’m finding the same, I do my research and ask for what I think I need., I have a private endo too but he’s not that good. He is however willing to give me what I ask for. I’ve asked my gynae for a blood test for testosterone and she wrinkled her nose saying a test doesn’t tell you anything and it’s a case of deciding if it’s required based on symptoms. As she is private too I did get her to agree to the test…

I feels like pulling teeth some days doesn't it? Constantly fighting to get access to simple hormones. They behave as if they were top medical grade drugs.

Indeed 🙄😂

I was in a similar boat-minus taking the T4. Thought I had early peri menopause. Do you mind me asking how old you are? Turns out thyroid meds were not getting into my system despite the high dosage. Did you have all essential vitamins/minerals checked (those that need to be checked from stop the thyroid madness)? Turns out I was super low in zinc which was throwing everything off.

Litatamon profile image
Litatamon in reply to Jesstuo

Did you doctor support the investigation into your vitamin/mineral check? Or did you find out on your own?

Tradoc profile image
Tradoc in reply to Litatamon

I did a medichecks tests as advised on here

Tradoc profile image
Tradoc in reply to Jesstuo

I'm 45. And been on levo about 25 years

FancyPants54 profile image
FancyPants54 in reply to Tradoc

At 45 you no longer need a blood test to diagnose perimenopause. You go off symptoms alone now. Not that all GPs realise that. But it's in the NICE guidelines. You can start treatment if you wish. I couldn't think without oestrogen. I couldn't even read a book for pleasure. I could not make a decision about anything and I lost so much confidence I could not leave the house on my own.

Tradoc profile image
Tradoc in reply to FancyPants54

My mood is so bad at the minute.very up and down

FancyPants54 profile image
FancyPants54 in reply to Tradoc

Which is pretty typical of fluctuating oestrogen levels. One minute ready to kill someone, the next locked in a black cloud and wanting to be alone or crying or both!

Tradoc profile image
Tradoc in reply to FancyPants54

Yeah and my doctor won't consider hrt until I speak to my endo

FancyPants54 profile image
FancyPants54 in reply to Tradoc

What the flippin’ heck has HRT got to do with an endo!? They don’t know diddly squat about thyroid let alone HRT. At least you now know that your GP knows nothing about HRT or menopause. So you are free to find someone better. Are there other GPs in the practice? If so, ring reception or the practice manager and ask if there is a GP with an interest in menopause treatment and go see them.

Tradoc profile image
Tradoc in reply to FancyPants54

It's because he has my on a trial of T3 and they don't want to add anything without his day so. I've booked an appointment at a private menopause doc just incase I get nowhere

Nothing helpful to add. I just hope you get it all figured out soon. I am very sorry it has been such a struggle Tradoc.

Hi I've read your other posts, in one you consistently have high cortisol high cortisol suppresses thyroid hormones, I feel that you'll have a high RT3 (reverseT3) and low zinc, adequate zinc balances thyroid and cortisol, you can either get it tested ideally, or try 50mg of zinc daily for a couple if weeks then every other day, (zinc has a lot of work to do throughout the body), testing is ideal because you ought to have Iron and Copper tested at the same time, as their frequently out of balance The jittery feeling will most likely be the high cortisol high cortisol and low thyroid hormones leads to feelings of wired-cortisol n tired-low thyroid hormones.

Sooo ideal tests for the doctor to order are...

Zinc, Iron, Copper, also Retest Cortisol levels.

TSH, FT4, FT3, RT3,

There's a difference between high cortisol and cushings developing, cushings only usually raises its head after really long periods of high cortisol, leading to a real full on adrenal exhaustion know as cushings disease...

Hope that helps

BTW Sorting Zinc out alone reversed my Hypothyroidism and Adrenal Fatigue bringing high cortisol down as mentioned above...

I take zinc every Day

How much zinc

40mg

It would be interesting to get these tests done to see what's out of balance? Plus do you have gut issues that could influence absorption etc??

Not that im aware of

I was put on T4/T3 combination treatment fairly recently. Initially I felt much worse, to the point where I thought that it was a terrible mistake and wanting to go back to "the lesser evil" of T4 mono therapy. I phoned the pharmacist, who told me that, in her experience, it took 6-8 weeks to see an improvement and that sometimes some tweaking of the dosage was necessary after that time period. Some issues, like myopathy, she said, can take up to 18 months, if they were an issue before combination treatment, to resolve. So I hung in there. I am now finishing up week 7 and just a couple of days ago I started to see some improvement. I'm at least back to how I felt on T4 only, maybe a little bit better. This is, of course, subjective. So I am cautiously optimistic (or at least try to be). From that experience, I would recommend you try to hang in there for a little bit longer and see if things improve. I know that we wish there were an end to this already but maybe, just maybe, this is the last stretch of the journey and the reward will be better quality of life. I wish you much courage and resilience. Hang in there!

FancyPants54 profile image
FancyPants54 in reply to buddy99

UK gives out such small amounts of T3 to people. You will probably need more to find your balance at some point.

Tradoc profile image
Tradoc in reply to buddy99

Are you still feeling good. I'm 6 weeks tomorrow and still feel awful. Like I have every symptom of hypothyroidism even though I'm taking meds don't see my endo till next Saturday

buddy99 profile image
buddy99 in reply to Tradoc

No, started to feel terrible, even much worse than before. Turns out, my body did not absorb the compounded and my TSH went way up. The T4/T3 was way, way below normal. So now we try levo plus T3 separate. We'll see how this goes. At least it was tried and the nurse practioner was very apologetic. I think it is still worth working with her, just because she treats me like a human being. :) But now I feel like I gave you bad advice. Have you had your values checked? If not, that would be my next advice, to do it asap.

10mcg a dayof t3 is almost nothing. I take 100 mcg a day oft3 only. I doesn't take time it's fast acting unlike t4. My daughter takes 50 synthroid plus 10 mcg t3. It didn't help. Dr said she needs more t3. You probably need more

It’s very early days! You said you were being prescribed T3 27 days ago so it’s a bit soon to tell. I was prescribed 2 x 5mcg T3 along with my 100 mcg T4 . I was previously on 125 mcg but because of v low TSH was asked to lower dose which just made me more hypo. Basically I’m a poor converter.

I started with 1 x 5mcg T3 morning and evening but palpitations were really strong so reduced T4 but that didn’t affect palpitations.

So after nearly a year I have now settled on 100 mcg daily with half a T3 tab early morning around 7.00 (with my T4) and same at night (10 p.m) with my statin. (Tried another half T3 middle of the day but palpitations returned). So to get back to feeling best I’m adding 50 mcg. T4 one a week though I may increase this a bit.

It’s taken a bit of trial and error but that small addition of T3 has really helped. No falling hair, no constipation, no v dry skin, no poor circulation in toes! I used to be on 150 T4 and felt okay until docs went by TSH alone ...my T3 and T4 were always fine.

I have to tell you that I started taking T3 in 2020. I started very low and increased my dose by 1/4 of a tabletevery month or 2 months. In summer 2021 I was thinking well I don't think this has worked maybe I had better try NDT instead! I was very upset.

Then only a few weeks later, I was brushing my hair and looked in the mirror, because I had been losing my hair on the hairline either side of my forehead. Well, if I had been sitting down I would have fell off my chair, because the hair on my parting was regrowing!

I watched it like a hawk and the hair on my parting on my left grew fine and it took ages for the hair on my right to start growing, but it did eventually.

So I have continued with T3 and I can't say it is perfect, but I sleep well, my itchy ears disappeared, I began to lose weight, my depression lifted, I am more energetic. In short, I have a life.

4 weeks really is a drop in the ocean in the scheme of things. I know it is hard, because you are wanting it yesterday, so did I. Rome wasn't built in a day.

buddy99 profile image
buddy99 in reply to BrynGlas

That was definitely one of the first signs of improvement, hair growing back. I had lost most of my body hair (which is very practical in summer...no shaving legs or removing underarm hair because there is none) and now it's all coming back (just in time for summer ;) ). Sleep was another thing. The only time I had experienced really good sleep in decades was when I was put on morphine (another medical story here) and I had gotten used to not sleeping well, it was normal to me. So I was ecstatic when one day I hit the pillow and slept for seven hours straight (almost like on morphine). I have been sleeping that well for the most part ever since. That's why I am cautiously optimistic that things will improve with time (and I have only been on the combination treatment for just under seven weeks).

Tradoc profile image
Tradoc in reply to BrynGlas

My hair is falling out more on the T3 / t4

And remember we’re all different while 5mcg. T3 is enough for me ... others have all T3! And on the subject of HRT it was when I stopped taking it after 10 or so years I reckon my thyroid meds or at least TSH went awry. May never really know the causes of V low TSH with hypo symptoms.?!?

Do you supplement with magnesium or vitamin b12? I suffer with 'internal tremors ' now and again....quite scary and unpleasant. Either magnesium or b12 sorts it out, but I dont know which one helps, so I take them both. I can't afford to take them daily so I supplement for a week or two and then discontinue until the tremors start up again. A low level of either could also be affecting your energy levels. I take sub-lingual methylated b12, and magnesuim citrate . Hope this helps.

Tradoc profile image
Tradoc in reply to Kimfalmouth

Yes I take both a b complex and magnesium

Daffidols profile image
Daffidols in reply to Tradoc

My tremors stopped when I went strictly gluten free and have never returned. I would wake in the morning with extremely bad tremors down my spine - it was very scary but as soon as I stopped gluten the tremors stopped. So maybe stop gluten for a while and see how your body responds

Best of luck

Covid causes the thyroid levels to crash. It can also make them difficult to rebalance them. Have you got long covid? It will cause cognitive problems, possibly some of these symptoms will typically be caused by hypo. Lack of appetite can be caused by both long covid and hypo. Trembling Inside? I get that when my T3 is low.

Tradoc profile image
Tradoc in reply to MrsRaven

I don't know if I have it but covid defs messed me up

Doesn’t sound like near enough T3! Granted I take T3 only after over 20 years messing about with levothyroxine and other meds. Was on 4 grains (240mg) of NP Thyroid, then Armour after NP went south… Covid definitely messed with me and my reverse T3 started to rise as my iron levels went down. Six months later I have titrate up to 75 mcg of Sigma Pharm T3 and feeling great! I am a complete replacement after radioactive iodine in the 1980’s.

Not sure if I’ll stay at 75 or end up closer to 85 mcg to more closely mimic the 4 grains of Armour … so know you definitely need more T3.

Do you take T4 as well?

No, I’ve been taking just T3, dosing 3 times per day, for the past 2 months. It seems to be working well for me.

Are you sure it's not reverse t3 being caused by the thyroxine that's causing the issue, I just take t3 5mg every 12 hrs

Try taking vitamin tablets to as I didn't feel any better just on my thyroid tablets I take 75mcg levo and 20mcg lioth but still felt tired n brain fog and the rest so started taking vitamin d and it has helped. Ask doc for a full m.o.t

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