T4 / T3 AND TSH - WHAT A CRAZY RIDE!: Hello... - Thyroid UK

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T4 / T3 AND TSH - WHAT A CRAZY RIDE!

JOE111 profile image
35 Replies

Hello! Firstly just want to say thank you for reaching out to help!

I had a Total Thyroidectomy due to a large goitre back in 2014.

Since then I've been on the very exhausting mission of trying to get my thyroid levels sorted and within optimum range.

For years my GP was dosing me at 150 of T4 per day, on 150 I felt very hypo, she would only test my TSH and T4 (never free T3), she was completely useless to say the least, this went on for 3 years - Yes, 3 YEARS OF HELL!

I've now found a Endo who is well know for thinking out the box has worked me up to 175 of T4 per day, My results on 175 a day are as follows

[TSH 0.04 (0.55-4.78)]

[FT3 5.6 (4.0-7.0)]

[FT4 23 (10-25)]

I Spoke with my Endo the other day and he says i have two choices,

1 - up my T4 to 187.5 and that should up my FT3 to ~[6.3 (4.0-7.0)] the upper 33% range which is what I want

or

2 - Reduce my T4 dose to 125 and introduce 12.5 T3 split in two doses (6.25) throughout the day. im happy to try this option but dont want to be hypo again!

I'm worried that if i went for option 1 and up my T4 dose i would be touching the realms of over medicating T4? Does having a high pool of T4 have negative effects? I know it can potentially turn to more Rt3 but should i be worried?

Please note, ive never had my Rt3 checked so not sure if it high or within range.

Is it ok to have suppressed TSH of 0.02 with HIGH FT4 around 25 or 26 out of(10-25) if it means my FT3 is in a good range?

Also its probably worth to mention that I was also diagnosed with SIBO, which seems to be under control now with medication.

Thanks for the help!

J

35 Replies
greygoose profile image
greygoose

Increasing your levo so that your FT4 is at the top of the range will increase conversion to more rT3 and less T3. So it could lower your FT3 rather than increase it.

rT3 is not a problem in itself, the rT3 is converted to T2 within a couple of hours, the T2 to T1, and the iodine recycled. It does this so that you don't have a high 'pool' of T4 and neither do you have high levels of FT3. That is its purpose. But, seems to me it would be more effective to reduce the levo and add in the T3.

Your TSH will be suppressed on T3, anyway. It doesn't matter. But, if you suppress it with too much levo, it will further affect your conversion. So, if I were you, I'd definitely go for the T3. :)

JOE111 profile image
JOE111 in reply to greygoose

Greygoose , Thank you for the reply, you dont know how much this means to me, its been a long road, and i finally feel like im getting close.....

You probably know what i'm going to ask next? How much should I reduce my T4 by and how much T3 should I add? I've been following some other discussions and some say T3 should be 10% to 20% of the overall dose combined and that T3 is anywhere between 3 to 4 to 5 times stronger then T4.

hypothetically speaking, if my FT3 is at a good level (upper 30%) [FT3 6.3 (4.0-7.0)] with 187.5 of T4 am i correct to say that i should probably reduce my T4 to ~ 137.5 and add 12.5 of T3 split into two doses throughout the day (assuming its 4 times stronger) that would mean 12.5 * 4 = 50 +137.5 of T4 = 187.5?? this would only mean my T4 to T3 ratio is only 8% tho and not 10% or 20%.

My Endo think that T3 is 5 times stronger and wants to reduce my dose to 125 of T4 and add 12.5 T3 split twice throughout the day which would add up to 187.5 of T4 if i did the maths going by a 5 times strength and not 4.

Some people (dr Childs) even say that for every 50 of T4 reduced you should add 25 of T3, if this is true I'm going to be hypo If i follow my endos proscription, I work a very demanding job and i need to be on the ball so im just trying to take precautions not go hypo again.

Can you also please tell me how to dose the T3? is it every 8 hours? with or without food? what would happen if i miss a dose? i know the half life is 24 hours but ive heard that it could be much less then that?

Also can you please tell me how i go about running a blood test after taking T3 to make sure my levels are in the appropriate FT3 range? my endo told me to take the t3 pill in the morning an do my test in the afternoon or evening? would this show the real level of FT3? He mentioned you dont want to take it first thing and go for the blood test straight away cause that would show FT3 as too high, so when is the best time to do it?

Looking forward to hearing from you!

greygoose profile image
greygoose in reply to JOE111

For a start, forget percentages and ratios and all the maths. They are not relevant to thyroid hormone replacement.

For convenience, we usually say that when you add T3 to T4, you reduce the T4 by 25 mcg and add 6.25 mcg or 5 mcg T3 - depending on the size of your pill. If you want to add in 12.5, you could still just reduce by 25 mcg, or you could go for 50 mcg. But, personally, I would go a reduction of 25 mcg and an addition of 6.25 mcg. Slower is usually better. You can add or subtract more later on, if needed.

If you're just adding 6.25 mcg, I wouldn't split it, if I were you. Take it either at the same time as your NDT, or at a different time, as long as you take it on an empty stomach, etc. just like levo - and, presumably, the way you take your NDT.

I would be very wary of Weston Child's, if I were you. He has some strange ideas. And, what if you do go a little bit hypo? You can increase your T3 by 6.25 mcg every two weeks until you get it where you want it to be. But, also be wary of fixing goals - except the goal of feeling well. The numbers are less important than how you feel.

I take 75 mcg T3, and I take it all in one go. That does me no harm, with the hormone resistance, and because of the hormone resistance, I need the receptors to be well and truly flooded. Splitting it in any way would be less effective for me. But, we're all different, so there are no rules about how often you should take it. You need to find out what's best for you.

Forget about the half-life, too. It's always 24 hours. But, that's in the blood. What gets into the cells stays there for about three days. So, if you take your T3 regularly, it doesn't matter about the half-life. :)

JOE111 profile image
JOE111 in reply to greygoose

noted, ill try not to mathematically sort it out :) haha.

can you please tell me how i go about running a blood test after taking T3 to make sure my levels are in the appropriate FT3 range? my endo told me to take the t3 pill in the morning an do my test in the afternoon or evening? would this show the real level of FT3? He mentioned you dont want to take it first thing and go for the blood test straight away cause that would show FT3 as too high, so when is the best time to do it?

Also how clued up are you on PTH? my PTH is pretty low at 1 (1.6-6.9)

due to this i'm also taking 0.25 of alphacidol + 500 calcichew which is helping in levelling /controlling my Calcium levels at about 2.36 (2.2-2.6)

. do i need more alphacidol? whats the optimum calcium level? Should i be taking vitd3 tablets on top of alphacidol?

With regards to T4 / T3 combo therapy, I'm going for it. Will let you know how i get on.

Thanks again for all your help!!!!!!!!!!

greygoose profile image
greygoose in reply to JOE111

Well, he's sort of right. You do need to leave an 8 to 12 hour gap between your last dose of T3 and the blood draw. But, it depends on his attitude to TSH, because the TSH would be a lot lower in the afternoon/evening, than in the early morning. And, I'm not sure that taking your T3 in the morning and testing in the afternoon would leave a long enough gap. So, you need to work out what fits in for you.

I'm afraid I know nothing about PTH. I would suggest you post a new question asking just that. Because there are plenty of people on here that do know. :)

JOE111 profile image
JOE111 in reply to greygoose

Great, ill start another discussion about PTH.

Greygoose, can I ask you what vitamins you take if any? ive been taking multi vitamins daily in order to support / help me convert T4 to T3, however, my multi vitamin has iodine in it aswell, am i right to say too much iodine can have negetive effect in the body? i dont have a thyroid anymore so dont need iodine? or do i? i know T4 has iodine in it , is it best to take a multi vitamin with no ioidine in it?

greygoose profile image
greygoose in reply to JOE111

You're right about the iodine, you should not be taking extra. You will already be getting 113.75 mcg from your levo, plus what you get in your food. Excess iodine is not good, and, as you say, if you don't have a thyroid, you will be using less anyway.

But, that's not the only thing that's wrong with multi-vits. They can contain other things you don't need, like copper and calcium. These should be tested before taking any. Plus, if your multi contains iron, it will block the absorption of all the vitamins, so you won't be getting anything out of it. Waste of money!

What you should do, to support your conversion, is get your vit D, vit B12, folate and ferritin tested, and only take what you need, according to the results, plus co-factors.

Myself, I take iron - with lots of vit C - vit D and magnesium, vit D, vit B12 with a B complex and vit E. I also take NAC, which helps with my breathing problems, turmeric and honey, and CBD oil. Plus lots of ginger tea! :)

m7-cola profile image
m7-cola in reply to greygoose

I found this very helpful. Thank you GG

greygoose profile image
greygoose in reply to m7-cola

You're welcome. :)

in reply to greygoose

Would Armour Thyroid work for him it would be less pills to take through the day? Either way Joe sounds like he has a good Endo I'm jealous.

greygoose profile image
greygoose in reply to

If, as I suspect, he has some degree of thyroid hormone resistance, Armour would contain too much T4 for too little T3. He needs a very high level of FT3, apparently. Taking T4+T3 gives you more flexibility.

JOE111 profile image
JOE111 in reply to

He sure is a good endo! im very greatful for him to say the least!

in reply to JOE111

You are a lucky guy... When I go to see my Endo I hear circus music.

JOE111 profile image
JOE111 in reply to

I had to find somone! the endo i currently see is not even in the same town as me! things got so bad with me where i was super deppressed, my GP was utter useless and arrogant! she littreally unintentially tortured me for best of almost 4 years and didnt even know what FT3 was, she was always trying to tune the amount of T4 with my TSH!! on top of my thyroid issues I had really bad digestion and bloating which I was told was for years it was IBS, turned out to be h.pylori, after h.pylori meds I was in a living hell and a few months afterI was diagnosed with SIBO, again similar story with SIBO my gp wouldnt test me for it and didnt even know what it was! I got the test done privatly and came back positive! started taking antibiotics (rifixamin again sourced privatly) and felt great for the 10 days i was on it (no migraines, bloating, fatigue) , still fighting SIBO with SCD diet and probiotics and digestive enzymes! after a lot of reaserch i found out that a lot of patenits with thyroid issues (in particular hypo paitents) have developed SIBO and dont even know about it! SIBO can cause you to not convert T4-T3 well if you have it which is what i think is going on with me! Also there is some reaserch to suggest that SIBO and h.pylori are firstly caused by low stomech acid which is common for hypo patenits!

In short! being HYPO for so many years diffenitly had a knock on effect on my digestive system an subsiquestly everything else to do with my well being!

If someones reading this and has really bad digestive issues and your GP simply says it IBS and brishes it off and puts you on random anti acid medication and so on, PLEASE TEST YOURSELF FOR SIBO, just to give you an idea, 16 million people are diagnoised with IBS in the UK, of which, 80% dont actually have IBS and have SIBO! yes 80%! the reason SIBO is ignored is all down to money much the same story with T3 medication!

Come the revolution!

in reply to JOE111

Where are you located?

shaws profile image
shawsAdministrator in reply to JOE111

I don't think revolution is too strong a word. When people are left undiagnosed/undermedicated due to the apparent poor training doctors appear to get for one of the commonest authoimmune diseases it annoys me intensley.

Those people who are hypothyroid and taking thyroid hormones that make them feel worse, lose their jobs, cannot think straight why are The Professionals completely unaware -WHY - that it is connected to insufficient thyroid hormones or ones that would/could improve their lives.

The fact is that is we are dealing with life-giving hormones - and we all need different doses etc - why cannot we be prescribe options that may suit us better, i.e. NDT, add T3 to T4 or T3 only if necesssary. Those who are in a 'profession' which is supposed to be compassionate to the suffering, and all steps taken to resolve symptoms that first NDT is removed from being prescribed, then T3 and we're left with no option but levothyroxine and I do know of one who took her own life, leaving a statement of why. Utterly sad and unnecessary but some cannot carry on.

waveylines profile image
waveylines

Just to add to greygooses excellant advice, when you add T3 in to some degree you have to go on how you are feeling. T3 gives a pretty quick boost. You will likely notice it. The effects last around 5-6 hrs my old school endo says. Therefore splitting doses can give you greater efficacy. Having said that some people take it all in one go & are fine. Infact are better that way. Everyones different. Any changes should be introduced slowly as the body takes time to adjust.

Whilst your introducing and finding the right balance for you of T3/T4 its a good idea to keep a little daily record of how much and how you are taking both T3 and levo, your temp and pulse rate first thing in the morning and how you feel, plus any other supplements you are taking. This can serve as a great record to look back on. You can attach any blood tests to your record.

JOE111 profile image
JOE111 in reply to waveylines

Thank you for the tips! I have already started recording all my lab results and dosages from 1.5 years ago! its helped me alot in understanding my body and how much t4 effects me, ill be sure to continue this now that im going onto t4-t3 combo! will be happy to share my reults with anyone thats needs it!

shaws profile image
shawsAdministrator in reply to JOE111

The purpose of taking T3, is that it is the Active Thyroid Hormone - can be taken once daily. It's job is to saturate all of the T3 receptor cells, we have millions, and the work of that one dose lasts between one to three days by sending out 'waves'.

SusanAR profile image
SusanAR

Hi Joe. My thyroid story is almost exactly the same as yours! At the end of October last year my endo suggested lowering my T4 and introducing T3 because I still had so many hypo symptoms.

I haven’t felt so well in years. I actually feel totally normal now. I have no idea what my levels are at the moment but I have blood tests on Monday and whatever they show I know will be the best levels for me because of how well I feel.

I managed to go to the cinema last week and stay awake for the movie - a huge achievement for me! 😂

FancyPants54 profile image
FancyPants54 in reply to SusanAR

Can you share your dose structure. Are you taking it all at once or split?

SusanAR profile image
SusanAR in reply to FancyPants54

I take all my T4 in the morning. I changed that from night time because I was having problems fitting in my thyroid medication and my vitamins and leaving gaps between. I haven’t found any difference between taking at night or in the morning.

My T3 I started very gradually. I told my endo I was having a dip in the afternoons so he told me to split my tablets and take half morning and half afternoon.

So now I take half a T3 and a T4 at 6.30am. In the afternoons I’m playing around with timings to see what’s best. I started at 2pm and that was ok but I was tired in the evenings so changed to 3pm but then I was wide awake at 11pm so this week I’m trying out 2.30pm to see how that goes.

JOE111 profile image
JOE111 in reply to SusanAR

Hi Susan, Reading this put a smile on my face! im so happy to hear there is hope! Can you please tell me how are storys are similar? how much did you reduce your t4 dose by and how much t3 did you add? how do you split t3 during the day? so excited to hear about your story! glad to hear your doing well!

SusanAR profile image
SusanAR in reply to JOE111

There definitely is hope. This time last year I was sleeping up to 17 hours a day!

I had a total thyroidectomy 3 and a half years ago because of multi nodular goitre. I felt ok for the first 6 months then gradually started putting on weight, feeling exhausted and falling asleep anywhere, and loads of other hypo symptoms.

I kept going to the GP and getting really stupid answers - why do you need thyroxine when you’ve had your thyroid removed 🤦‍♀️. You’re absolutely fine and your thyroid is doing a great job (when I asked where this wonderful thyroid was she refused to speak to me any more) and a few more.

It took about 18 months of constantly complaining to get them to refer me. I got an amazing endo who went crazy and said I was severely under medicated. He tried upping my T4 but wasn’t happy with the results so introduced T3. I was on 125 T4 which he reduced to 100 and I take 10 T3 in the morning and 10 in the afternoon.

Now I just get a print out of my blood tests and refuse to speak to a GP about them. If I was concerned I’d just email the endo. The GP goes on and on about my suppressed TSH (0.001) and says I have a hyperactive thyroid then gets annoyed when I ask where this hyperactive thyroid is 😂.

Definitely give the T3 a try. It’s totally changed my life.

JOE111 profile image
JOE111 in reply to SusanAR

exact same story pretty much! my GP was also useless! i too had a multi nodular goitre. iweighing at 253g instead of 23 g! my endo also was raging when he first seen me, i think he actually wrote my GP a letter to highlight if she should perhaps read up on thyroid related issues and educate herself on it - MY HERO haha!

Susan, which country are you from if you dont mind me asking?

Also can you please tell me how your get your T3 medication? I live in scotland and I managed to get a family memeber to buy me 8 boxes of 25ug of T3 from turkey when they were over ( its costs £1 for each box compared to £220 in the uk), right now im cutting my dose using a pill cutter into 4 (12.5ug) doses give or take (depending how good my cutting skills are).

how do i go about getting 5ug of T3 as i think this would be best to start with until i know my range?

Also how did you know you were taking enough T3, did you run a blood test? i know i should go by how i feel but surely you need to do a blood test to confiem your nor hyper becouse some people feel great when hyper but they can end up getting heart problem and osteprosis?

also, do you have any PTH issues? have you ever checked your PTH after surgery?

Thanks

SusanAR profile image
SusanAR in reply to JOE111

I’m in Scotland too - Edinburgh. I think it’s easier to get T3 here!

My endo wrote to my GP and told them to put T3 on repeat prescription for me. I get 2 months supply and Boots always have it in stock.

If you have 25mcg tablets I would just quarter them and start on that dose. You always lose a bit that powders off when you cut them anyway. I found the quarter did nothing at all for me so after 4 days I went up to a half. I stayed on the half for about 8 weeks then added the other half.

I’ve never had my T3 checked! My GP says you just guess the level so I said I’d bring a dice to my next appointment 😂. Maybe they’ll check it on Monday.

My PTH is high and my vitamin D very low (16 or 17) - I’m on vitamin D, K and magnesium to help with that. They’re not sure if my parathyroid glands were damaged in the surgery.

They could give me cash to go to turkey or Greece to buy my own T3 and I’d get some sunshine - solving 2 problems! 😂

JOE111 profile image
JOE111 in reply to SusanAR

What are chances! we probably have the same endo!! :) :)

I travel down from Aberdeen to see him.

Your so lucky getting it on NHS, my gp isnt very helpful and for some reason they seem scared to give me T3 on the NHS, i think its because its more expensive and they dont want to answer to th powers above probably. Ill get my endo who is retiring in 6 weeks to prescribe me T3 through the NHS and see if i get lucky. Ultimately i might need to just move down Edinburgh by the sounds of things haha! Nicer down there anyway! :)

so do you just get 10mg of T3? is it cytomel? or....

Yes your vitamin D is very low. you should supplement with 50000 D3 for a month or two and see how your feel.

If you ever stop getting T3 and need some, let me know and i might be able to get some for you for cheap.

Thanks

SusanAR profile image
SusanAR in reply to JOE111

I hope mine isn’t retiring! I don’t know what I’d do without him, he’s amazing. He’s NHS at the Little France infirmary.

I get liothyronine I think it’s mercury pharma and 20mcg which he told me to cut in half to take in 2 doses.

He gave me 3200 of Vitamin D but I take my own on top of that to try to get it higher.

Thanks so much for the offer, that’s very kind of you 😊.

Murphysmum profile image
Murphysmum

Hello SusanAR and JOE111

I’m kind of gate crashing this post because I am just outside edinburgh and seeing an endo who retires soon too!

My story is slightly different to you guys but having had two dose increases of levo from him to no avail, I am hoping when I next go on the 27th, he might suggest T3. I am prepared to go it alone though if not so hence I’ve been reading this thread for info.

I’m really hoping T3 might restore my previous health. I cannot feel well now and feel like I’m losing muscle strength by the day. I recently dropped my levo dose as my last bloods were showing I was over and already I feel worse... it’s only been a few days.

Anyway, I have nothing to add other than to say “hello”, and good luck on your respective journeys 😉

SusanAR profile image
SusanAR in reply to Murphysmum

Hello! I had a couple of increases too before he started me on T3. I have to say the difference is amazing. I feel completely normal again and it’s great having energy to do things.

I was a bit scared of starting the T3 thinking I might not sleep but it’s fine and it’s great having a metabolism again!

Is your endo NHS or private? Mine is at little France but I’ve heard there’s a couple of good ones at the western general too.

Murphysmum profile image
Murphysmum in reply to SusanAR

Hi!

I gave up on my gp and when eventually I got them to write to an endo for a referral I got a reply that said “5 to 10% of patients are never well on their medication” 😡

At that point I went to see Prof Toft at Spire and he’s given me the two increases. The last however was too high so now I’m back down again awaiting an appointment. I’m really hoping he’ll trial T3 now.

He retires shortly so I may be back in touch at some point to see who it is you see. Otherwise I’ll go it alone as seems to be the case all to often sadly.

I so want to feel normal again. My main issue is just a feeling of heaviness. Like I’m filled with concrete. Everything is an effort. Most of the other symptoms have gone but I cannot get fitter, nothing gets any easier and I feel like my muscles are just giving up.

I’m encouraged to hear what you say about T3, I really hope it’ll help me, I worry about things like MS the longer this goes on but I have to keep telling myself it’s a metabolism thing.

Fingers crossed for T3!! Thanks for your reply 😊

appyalison profile image
appyalison in reply to Murphysmum

Good luck Murphysmum. After 32 years of always feeling unwell, I was trialled on T3. I felt so much better, not fully well but a lot better. Then GP took me off it due to cost. All the pain and itching came back. I felt so depressed. Rang Endo, she was not pleased as I fulfilled every criterion for being able to have it. The pain and brain fog with itching and compete lack of energy was very depressing. Back on T3 now and managing much better again.

I wish you the very best of luck.

Murphysmum profile image
Murphysmum in reply to appyalison

32 years?!

Wow, you have my respect. I’ve been like this for just short of 18 months and I’m fed up.

Thank you for sharing, fingers crossed that next for me 😊

Dadondadda profile image
Dadondadda

I have my 2 cents to add in, and it may be a bit different.

I have had a high dose of t4 and felt hypo and it was only apparent when testing my total t3. My free was always normal or high. I had tt3 0f 74 -90 on the american range, and in a trial I pulled up, the mean is 125 + or - 20, so I was far below.

I would also test rt3 and t4 on any higher dose of t4. Note, I'm advocating ADDITIONAL testing and not replacing any test - they tell you different things.

According to the endocrinology textbook, t4 suppresses d2 (to t3) but raises d1 and d3 (to rt3), so you better have good d1 function as you up the t4.

For me, I can't be sure of causality, but I think too much selenium suppressed my d1 - as it has been shown to do occasionally, even at the lower doses advised on web-boards. I think this caused my low t3 but am unsure.

So, I think you have more work ahead of you, but, if I were forced to pick, I would vote the lower t4 dose with a little t3.

But note the difficulty of interpreting labs once you add in t3. It will spike serum levels within a few hours and then gradually disappear to cells. The tsh response curve to t3 is slightly delayed (by a few hours), so it will be low even after the t3 has declined back to your baseline. Also note that rt3 is a pretty sensitive marker of hyperthyroid too - so an elevated rt3 could mean you have too much t3. True, it's made from t4, not from t3, but the body has too much t3, so it inactivates any t4 it has as a means to not raise t3 further.

Miserable1970 profile image
Miserable1970

Yip go for liothyronine (t3) it helps with the uptake of t4, but those bloods look good, but my endo just doesn't look at bloods he treats symptoms as well, so if your feeling well just keep it as it is. God bless

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