Not reacting well to T3

[Juliet_22]

Hello All,

I wonder if there are people here who have not reacted well to T3?

This is the second time I'm trying to take it. First time, it was about 5 years ago when I needed to raise my T3, it was at 20% range. I took just 5mcg of compounded T3 as per my Doc advice and started to feel anxious, with headaches that I don't get, feeling dizzy, racey, and totally weird, like my body is numb and I am not "in my body".

This time, I also could do with raising my T3 (test results below) and I've been trying to take it, again starting from a small dose of just 5 mcg. On the first day, I had raised pulse rate of 88 (my normal is around 70-72), a lot of anxiety (I'm not high anxiety prone person generally), heart racing. Never had HPB or high pulse issues before. I took it for 3 days and started to feel very, very strange - spacey, uncomfortable, jittery, like again I'm not in my body and my mind is going crazy and I can't focus. I stopped taking it today and feel more like my regular self.

I've read that some people can't tolerate T3 and I seem to be one of them.

I'm including my test results. TSH is elevated, my normal range is around 1-2. It got elevated due to me trying to take iodine. I took a small dose of it, under 100 mcg and just like it did last time I tried it, it threw my thyroid out of balance. I stopped taking it. My TSH back in Dec was 6.6, so where it is now, things have improved.

I take T4 @ 75 mcg, been on the same dose for about 15 years. Back in Dec, my doc and I tried to increase T4 to 100 mcg and that resulted in 5 trips to A&E with high blood pressure, high pulse, heart palpitations and even breathing problems once. Seen cardiologist, checked my heart, all is healthy. Dropped T4 to 88 mcg, still same racey symptoms. Tried taking 75 and 88 on alternative days, still the same. Only when I returned back to 75 mcg my symptoms have settled.

Been in 75 mcg for about 7 weeks now and TSH went down from 6.6 to 4.9.

I don't want to take NDT for ethical reasons (vegan).

I supplement with D, magnesium, iron, B12, methyl B complex, Betaine, selenium, zinc. My nutrition is great, gluten/dairy free, been on the same diet for a long time, weight is healthy.

I lack energy in the morning, but pick up later and can exercise and stay active.

If I can't take T3, shall I continue doing what I can to keep on raising it naturally? Historically, over the years, my T3 levels are usually around 30-35% of the range. The ideal is above 50%, I know, but I can't seem to take T3.

My recent results:

TSH: 4.9

T4: 45% of the range

T3: 33% of the range

9am cortisol: 384 (133-537)

Saliva cortisol levels are raised:

8am: 25.1nmol/L (high) < 20.3

12noon: 9.9 nmol/L (high) 1.6 - 5.6

4pm: 5.1 nmol/L (normal, but should be lower ideally) < 6.94

10pm: 4.9 nmol/L (normal, but should be lower) < 7.56

Folate: 16.4 (2-26.8)

Vitamin D – 60 ng/ml

B12 – 681 (up to 771)

Ferritin: 80 (up to 150)

Anti-TPO: 195 (<34) (my TPO stay in the same 100-200 range, but I lowered them from 600 before)

Anti-TG: 60 (<115) (my anti-TG has been lowered from 550 before and stays in about the same range)

A1C and blood glucose - very good

Liver, kidney, FBC, CRP all good.

Thank you for your help!

[Buddy195 Administrator]

Which brand of T3 have you been prescribed? Some people do better with certain brands. I started very slowly with T3, adding 2.5mcg at first. I find a pill cutter really useful for this task.

[Juliet_22 in reply to Buddy195]

It's compounded, so comes in a capsule. Not sure if I can split the caps. Are you now used to T3? How much are you taking right now?

[Buddy195 Administrator in reply to Juliet_22]

Yes I’m now used to the T3, but it took a while & I didn’t get the immediate’eureka’ effect that some other members have. I’m better increasing ‘low and slow’ as I too ended up in A and E with palpitations, tremor etc. I’m now on 75 Levo and 15 Lio.

[Juliet_22 in reply to Buddy195]

Ok, looks like I see more people who are very sensitive to any increases! How long did you give between your dose increases?

[Buddy195 Administrator in reply to Juliet_22]

super slowly….. I only increased alternate days at first, then daily; it took months for me to build up to dose recommended by my endo

[Rhannii7 in reply to Juliet_22]

You can buy empty capsules online, I split capsules like that. Just pour half into the empty capsule. You can also top some on yought or food and take it that way, it doesn't matter if you take t3 meds with food

[GlowCoach Administrator]

Why are you trying to add T3 when you have plenty of room for a Levo increase? I'm sure a few levo dose oncreases will see your FT3 in a much better place.

What you may be experiencing are hypO symptoms and you just need more thyroid hormone. If you cant tolerate T3 then go ahead with Levo. Increasing thyroid hormone will increase heart rate and it can go a little higher than usual before it settles back down.

Iodine is not recommended in hypothyroidism. It used to be used as a treatment for hyperthyroidism.

Your Vit D could be a little higher.

[Juliet_22 in reply to GlowCoach]

Thank you! That's the thing, I took a higher dose of T4 for about 1 month and it got so severe, I even had breathing problems. Shaking, HBP, high pulse, a lot of anxiety, racing heart, 5 trips to emergency department. It all settled when I went back to 75mcg. My TSH also decreased from 6.6 to 4.9 with the decrease in the thyroid med, so something is happening.

[GlowCoach Administrator in reply to Juliet_22]

You are just sensitive to increasing your dose. Probably going to have to do it very slowly, in very small amounts. Get a pill cutter, cut a 25mcg pill in quarters and take an extra quarter every other day to start with. If that goes OK or when symptoms have settled then add the next quarter and so on.

[Juliet_22 in reply to GlowCoach]

Ok, thank you, I could try that again, though I tried half of 12.5 mcg with 75 mcg, so just over 80 and still had the same racey symptoms, so feel cautious about that. What other options are there?

[DandyThyro in reply to Juliet_22]

When the endo recommended T3 for me it was at a dose of 0.25mcg, a tenth of the pill most of us get privately. My GP refused to honour the endo's prescription and I eventually bought the 25mcg Tiromel. Using a pill cutter, I quartered pills, using a quarter, I pulverized it between two spoons and added the powder to a measure of water,which I took then with a teaspoon once or twice a day, to match the dose the endo suggested. I did gradually increase until I was taking it in pill form, but it is possible to reduce your dose using careful measuring, sterilized receptacles and storing the 'water' in the fridge.

[Litatamon in reply to DandyThyro]

Look at you! 😁 A little chemist at work.

[DandyThyro in reply to Litatamon]

😂

[humanbean]

I had difficulty tolerating T3 when I first tried it, about ten years ago.

I also had high cortisol. My best cortisol result i.e. the one closest to optimal - although still too high - was the second sample of four in a saliva cortisol test.

I found that taking T3 at the time my cortisol was at its best allowed me to tolerate it better than at other times when my cortisol was even higher.

The other thing I had to do was to split my T3 dose into several tiny doses which I took at intervals after the "best" time. I did my best to avoid food when I did this but found that for practical purposes I couldn't do this all the time, so I just took it with food when I had to. It probably cut my absorption of the T3 down but there was no other way I could tolerate the T3.

Note this worked for me, but nobody can guarantee it will work for you.

Nowadays I take both my Levo and my T3 in one go first thing in the morning, and I tolerate it very well - so things don't stay static - they can change for the better given time.

Good luck.

[Lalatoot]

Julia there is no best result for ft3 as we are all different. Maybe your normal ft3 result was in the lower half before your thyroid troubles began. So maybe this is what your body wants t3 wise Have you tried splitting your levo dose? It is the only way that I could tolerate it. For some people the sharp spike of the peak as the total dose of t4 enters their system is enough to set things awry. However taking the same daily dose in 2 or 3 doses means that the peak is lower and gentler on your body.

[Juliet_22 in reply to Lalatoot]

Thank you! When I increased my T4 from 75 to higher, I tried splitting it, it still didn't work, the higher dose I mean. But 75 I can take in one dose, no problem. So far, I have not had much luck with T3, but it could be because I have high cortisol levels.

[Hashiboy in reply to Lalatoot]

Lalatoot really good point.

[Hidden]

If you cannot tolerate thyroid meds, particularly T3 then it is most likely your cortisol or your iron. I would take some adaptogens for the high cortisol and then reintroduce the t3 in 8 weeks.

[Hidden]

Low cortisol causes T3 to work less effectively within the cells. This is because T3 and cortisol are partners within our cells. High cortisol also causes problems and can reduce the effectiveness of T3 within the cells, hence thyroid patients with high cortisol often complain of feeling hypothyroid even when they appear to have reasonable FT3 levels. When patients try to raise T3 levels in the presence of low cortisol, they may find that the body compensates for low cortisol by producing more adrenaline. This can cause anxiety, rapid heart rate, the feeling of heart palpitations etc. This is usually the adrenaline response rather than a direct issue with the T3. Very often, it is the low cortisol that is at the root. (Paul Robinson website)

High cortisol can also play havoc with thyroid hormone uptake.

[SlowDragon Administrator]

Which brand is your 75mcg levothyroxine

Is it single 75mcg tablet

Or 50mcg plus 25mcg

Which brand was 100mcg tablets

Vitamin D - what’s the units…. ng/mL or nmol

Your high thyroid antibodies confirms Hashimoto’s

Are you on gluten and/or dairy free diet

[Juliet_22 in reply to SlowDragon]

Yes, been gluten and dairy free for over a decade and exclude many Hashi trigger foods, very committed to my diet and lifestyle. I changed the climate from warm, where my thyroid always does well to cold, where I struggle more.

I take a single tablet of 75 mcg, in the morning.

The brand is a German one, not available in the UK, but it doesn't have lactose. Been using the same brand for a decade.

100mcg was a single dose of another brand, Merck. I also tried alternating 75 + 100.

Then, we tried my 75 + 12.5 mcg of Teva, same racey symptoms.

Perhaps it's something to do with the brand.

My T4 is 50% of the range, so looks like I'm getting enough T4?

Vit D is 60 ng/ml, it's a good level.

Thank you!

[Josephineinamachine in reply to Juliet_22]

maybe add 12.5 once a week… 6 days 75 and one day 87.5 and repeat. See how that goes. If okay try 5 days 75 then 87.5 and repeat. But give it a full 6 weeks between any changes? Really tiny change but you might find a good place somewhere in there? I can’t tolerate T3. Made me exhausted AND I got heart palpitations 🤷🏻‍♀️

[Juliet_22 in reply to Josephineinamachine]

Thank you, this is a great suggestion! Looks like I'm not the only one not being able to do well with T3. What is your T3 range?

[Josephineinamachine in reply to Juliet_22]

no idea, haven’t tested for ages, but planning to test in a few weeks time to see what’s going on. I can only increase tiny amounts of T4 at a time. Currently I’m on 75, 100, 100, 75, 100, 100, 100 repeat. Have to use a calendar otherwise I’m completely lost! Good luck! 😊

[Bertwills in reply to Juliet_22]

Teva didn’t suit me at all, similar racing heart feeling, I think it has a sodium base which might explain it.

I now take T3 only and am doing well on Thybon Henning 40mcg. I don’t do well on T4.

Have you tried liquid T4, I think it is the purest form with the lowest number of ingredients. I think with the TSH reading you have you should try to increase T4.

[Juliet_22 in reply to Bertwills]

Very interesting! I tried different brands to increase, but any increase above 75 mcg of T4 has resulted in issues so far, so it's more to do with the dose vs the brand. I will try like some suggested to do a tiny extra dose 1-2 times a week and see how that goes.

[Ajva in reply to Juliet_22]

very similar story to mine. I do have heart and blood pressure issues but I am on a compounded t3 and can’t raise above 5mcg. Even on 5mcg I am resting rate of 90bpm and that is with a large dose of heart drugs to get my heart rate down.

I was on NDT but had the same problem with heart if anything was worse. I am on tirisont and compounded t3. I am guessing you are on tirisont as well? I have now raised my t4 to 125mcg but struggling on that too.

[Juliet_22 in reply to Ajva]

Sorry to hear that! Very interesting that you can't go above 5 mcg without issues. I know, it's very frustrating, but I believe we will get there!

[Ajva in reply to Juliet_22]

I do have pots, low iron and cortisol issues which I think is what causes issues. I think the pots make me sensitive to t3. But without t3 I feel so exhausted that it is hard. I hope you don’t mind me asking but could you pm me with the place you get your meds from? I am looking to change to a different Dr. Thank you

[SlowDragon Administrator in reply to Juliet_22]

Both Merck and Teva contain mannitol instead of lactose

Mannitol upsets many people

Suggest you try increasing dose by sticking with your current brand (is that Thybon Henning?)

[Juliet_22 in reply to SlowDragon]

I tried a lot of med brands, even just increasing mine and cutting the tablet, but same issues all the time. My German brand is Berlin-Chemie. What brand of T4 would you suggest that is both lactose and mannitol free please (and we can get hold of)? Where do you get Thybon Henning from?

[SlowDragon Administrator in reply to Juliet_22]

Are you in the U.K.?

Aristo is lactose and mannitol free

Currently only available in 100mcg tablets

U.K. and Non U.K. brands including ingredients

Henning is lactose and mannitol free

thyroiduk.org/if-you-are-hy...

[Juliet_22 in reply to SlowDragon]

Yes, in the UK. Thank you so much! I found Henning on the list. Do you know how to order it - just call the UK number?

[Rhannii7]

I feel your pain, I dont have the answers as im the same. Have you tried slow release t3 ?

[Juliet_22 in reply to Rhannii7]

I will give it a go!

[Juliet_22 in reply to Rhannii7]

Update: tried slow release T3, was an awful experience, even worst than fast release. So back on T4 only, got rid of Teva and switched to another brand. Currently taking 87.5 mcg and doing so much better!

[Carlax]

You have done a very comprehensive number of test results. Do you used different companies for your test results?How often do you check yourself?

Many thanks

Carlax

[Juliet_22 in reply to Carlax]

Everything apart from Saliva Cortisol and anti-bodies was done through NHS. Yes, even T3!

[SarahJane1471]

I’ve been following this post with interest. I just wanted to say you are not alone with this T3 response issue.

I too can’t take anymore T4. I’m on 125mcgs and have tried many ways to increase it but failed. Same sensations you describe. So I am now trying to add T3 ( privately sourced). It’s only been 10 days. I’ve been cutting a 25mcg tablet into 1/8ths. It really is a tiny crumb! I started morning then late afternoon. I felt great initially, the best I’ve felt in 4 years. I thought at last I found the magic thing I need. However, I was finding myself feeling a bit jittery so stopped the afternoon dose after 5 days. Then on day 7 I pushed my luck and went on a 4 mile walk. BIG mistake. On day 8&9 I crashed. So now, having learnt my lesson I’m going to be very careful. I literally am taking a tiny crumb each morning with my Levo and not over doing it. Although because I feel well for the first time in years I’m having to restrain myself 😂. If this doesn’t work I really do not know what I will do. Which is scary. I may have to go back to Levo only and try the tiny extra a week you have been advised by others. It seems like a plan but if you still want to try T3 I think you could get the prescription changed to tablets so you can cut them.

Sarah

[Juliet_22 in reply to SarahJane1471]

Can you update us please? Are doing better?

[SarahJane1471 in reply to Juliet_22]

doing really well. I take 6mcgs in the morning with my Levo. Bouncing with energy but being careful not to overdo things. Side effects have gone. Definitely feel I needed the T3. Thank goodness for people on this forum and their support

[Juliet_22 in reply to SarahJane1471]

How long did the side effects last for you?

[SarahJane1471 in reply to Juliet_22]

in total 3 weeks. I’ve felt fine for the last 10 days so I increased from 3mcgs to 6 mcgs. For me I only seem to need a tiny dose 🤷‍♀️. You could try again on a very small dose

[SarahJane1471 in reply to SarahJane1471]

just to clarify…. I took 3mcgs for 3 weeks until the side effects eased. They weren’t that bad because I had energy and the eased more and more each day. Then in week 4 I noticed energy dropping a little so upped to 6mcgs. I have not had side effects since ( except a little stiff neck for a couple of hours ) .

[Ruthi]

Are you symptomatic? I’m just wondering if you just run high on TSH?

I couldn’t take T3, I was the eureka type, but within 2 weeks I had arthritic symptoms that were unbearable . I couldn’t lift my arms above my shoulders! NDT did, and does, the trick for me. Did you know that Jews are allowed NDT although no other pork products, and I believe it’s the same for Muslims.

[Litatamon in reply to Ruthi]

Just adding to Ruth's post - I am not sure which website but I did read a blog about a vegan giving reasons why she takes NDT.It might be worth a read, even if it does not change your decision - a valid one of course - one bit.

[Juliet_22 in reply to Ruthi]

Did you struggle on T4 and switched to NDT and felt better?

[Ruthi in reply to Juliet_22]

T4 did absolutely nothing other than change my test results. Symptoms remained unchanged while my prescription increased. Eventually the GP told me I was on the maximum possible dose and I started looking for other solutions. In retrospect I suspect that my TSH had dropped to a level that made her uncomfortable!

Of course I doubt very much that they ever tested FT3!

[Juliet_22 in reply to Ruthi]

Are you still on NDT? How did it help you with symptoms?

[Ruthi in reply to Juliet_22]

Yes still on NDT 20 years on. It returned me to normal-ish energy levels! And has continued to do so although age is beginning to catch up with me.

[Mozzymoo22]

I have just come out of hospital with problems like this. It triggered an arrhythmia. I was discharged yesterday. The last time it triggered a tia. I'm not risking it again. I was on ndt for year's with no problems. I stopped taking it due to supply problems and went on t3 t4 combination. Then t4 only. I am going to have to accept my t3 being a bit lower. My t4 was raised to try and raise t3 but all it did was raise t4 and cause serious problems. Just try different ways of taking t4 and keep your vitamins and minerals in a good place. I hope you get some answers. Keep well.

[Juliet_22 in reply to Mozzymoo22]

This is so helpful, thank you so much for sharing your experience, I appreciate it. All the best!

[Juliet_22 in reply to Mozzymoo22]

Please can you share how you did on NDT and how that compared to you being on T4? I am seriously thinking of switching to NDT as feel so poorly on T4 atm.

[Mozzymoo22 in reply to Juliet_22]

I did well on ndt.

[Juliet_22 in reply to Mozzymoo22]

Did? Are you no longer on it?

[Mozzymoo22 in reply to Juliet_22]

No. It became too difficult to get hold of so I went on to t4

[lh22]

Have you checked your serum iron and Hb? You need good levels to convert T4 to T3

[Mozzymoo22 in reply to lh22]

My iron etc are excellent

[Juliet_22 in reply to Mozzymoo22]

I think sometimes it's literally to do with your body not reacting well to meds, or more meds, and not to do with iron and nutrients.

[Juliet_22]

Yes! Iron was 25.9 (5.8-34.5) and Hb was 125 (120-150). My Hb is traditionally in this range.

[Celestialbeing]

IMO, you will need to lower the T4 dose again. I could not use synthetic T3 as it caused headaches, stomachaches, constant hunger, constipation, and it did not increase my FT3. I tried splitting the dose but that did not work. I probably could have lowered my T4 dose as it was 88mcg but I did not want to do so with the side effects from the T3. Also, the T3 did not increase my FT3 and did not lower my TSH. Only when I switched to DTE/NDT, and achieve optimal levels, did I feel better.

[Juliet_22 in reply to Celestialbeing]

Very interesting that it didn't raise your T3 or lower TSH! I also had a head pressure from taking T3. Why do you think I need to lower again - from what results? We tried lowering to 62.5mcg with my my doc and I felt absolutely awful, very low on thyroxine, even when I tried it 62.5 here and there, but even that didn't work. So far, it seems that 75 mcg is working the best, but it's still resulting in anxiety at times and heart racing here and there, though my BP and pulse is now in the healthy range with this lower 75 mcg dose.

[Celestialbeing]

well my TSH was sufficiently suppressed but with T3 it goes lower (ok if the Frees are optimal). From others that have had this issue, they, too, had better results with a much lower dose of T4 and higher SPLIT dose of T3. I would make sure to split the doses AM and mid-afternoon PM and retest every 4-5 weeks every time you change (add/take away) dose and brand. If me, I would want a lower FT4 level and definitely test that FT3! When I was on 88 mcg of only T4, my HR and BP were slightly elevated.

It took going through 4 endos before finding an Integrative M.D. that knew how to dose and test. He led me to the next 2 endos that were wonderfully informed as well.

[Juliet_22 in reply to Celestialbeing]

Thank you for sharing, do you mind messaging me with your endo's details please?

[wanttobenormalnow in reply to Celestialbeing]

I am in us also, would you mind mssg me for your drs...endo info?

[Celestialbeing]

I am in the USA but I will message you.

[wanttobenormalnow]

I appear to be sensitive to T3 as well. I tried t3 and ended up with rapid heart rate, so gave that up. I was on 75mcg for decades. Then needed increase in my 40's took 100 for years but dr didnt like my TSH on the low end...was in range!!! But low end. Since then it has been a battle to get the dose I needed. Everytime I got an increase they would take it away a couple years later.

Now I feel like I am not right on any dose. But sticking with 88 5-6 x wk & 100 1-2 x wk...for the next 3 weeks....(its been 3 weeks since I started ) . On just 88 I get joint pain, lethargy, tooth pain, no hunger. On 3x100 4x88 I start feeling irritable, impatient and hungrier. I also get headaches the day after i take 100. I tried splitting the pill and it seems to help...the whole thing is just so confusing anymore.

I tried naturethroid before too but had a situation that occurred that scared me so I stopped as I had no one to help me through it. The dr that prescribed it went on vacation without mentioning it and I had an issue and she wasnt even around to help. She would have been able to anyway, she was clueless

But the first two weeks on NT was bliss. I forgot how it felt to be myself again. I actually felt positive. I feel like I walk around numb in comparison. It's just depressing.

[Juliet_22 in reply to wanttobenormalnow]

Thank you for sharing, I hope you'll find a way and make it work!

[wanttobenormalnow in reply to Juliet_22]

Thanks and same to you!

[HEA72]

I've had the same reactions to you in the past and had to come off thyroid meds because of the side effects. I tried all of them: Levo, various brands of T3 only and NDT. However I'm now seeing a new doctor and she thinks my past reactions were down to poor adrenal function and feels once the adrenals are back in line, I'll tolerate the thyroid meds better. So she's given me advise on how to support my adrenals alongside starting me back on thyroid meds (NDT presently).

A thought, have you considered slow release T3? I had this prescribed to me by a UK private doctor, it was from a compounding pharmacy in Germany. I don't know if I'm allowed to name the pharmacy here, so feel free to PM me if you want details of the pharmacy. Just wondering if a slow release T3 would be more gentle on your system?

[Juliet_22]

This is very helpful and I have sent you a personal message, would appreciate a reply. Thank you so much for sharing this! I agree about adrenals. Yes, waiting for slow release T3 right now. Roseway Labs do slow release T3 and very good price, too!

[arTistapple]

Julia_T I am just catching up on your posts. The reason of course is similar problem to you. I have questions BUT if you decide to get slow release I hope you will post again with results.

[Juliet_22 in reply to arTistapple]

Awful! So much anxiety, I though my body would jump out of me and I'm not a high anxiety person. I woke up in the middle of the night with a sense of panic and not knowing where I am, but it settled. And whether it was from it or not ... HBP. I really can't tolerate T3. That's on slow release T3, I tried a small dose of just 2.5 mcg. I experimented with T3 - taking it a couple of hours before waking, taking it with food, splitting the dose, taking it later in a day, fast release, slow release, tiny dosing, always the same result - cannot tolerate it. Back to T4 only for me.

[arTistapple in reply to Juliet_22]

Yes me too and not even good news on it. I have been advised that I most likely won’t be able to increase that either due to same and similar issues. Felt totally trapped by that news. However I have recovered a bit thinking of different strategies. In many ways not that much better off than when it was finally diagnosed! The diagnosis came with “You will need to take this for the rest of your life but you will soon feel better” or words to that effect. Not true! I have already messaged you again on your more recent post. I hope you will be able to reply to that one too. It’s really hard putting T3 to bed, so to speak, after holding out great hopes for it. Thank you for getting back to me.