Advice

[cahod6103]

Hi has anyone felt a lot more unwell after starting on a combination of Levothyroxine and Liothyronine, I’ve been taking 75mcg of Levo and 15 of T3 for around 4 months now, but I’m feeling worse than ever. Any help would be really appreciated, thank you.

[prussianblue]

If you’re not on the right dose and don’t have it distributed across the day in a way that works for you then you won’t feel well. Have you had any test results and what other doses have you tried? When do you take it?

[cahod6103 in reply to prussianblue]

Hi, thanks for your reply. I don’t think I am on the right dose as I still feel unwell, but Endo thinks I am😢. He started me off on 75mcg of Levo with 10mcg of T3 in am, after first check of levels, he said to take the same in the am, but add in 5mcg late afternoon, so I now take 75 Levo and 15mcg of T3 each day, but I now feel worse than I did before starting on the t3. X

[Dressagelovr in reply to cahod6103]

Yes, it seems some people can't toletate T3. You can do a search to verify this.

[FancyPants54 in reply to Dressagelovr]

I'm starting to think I'm one of them!

I added just 6.25 T3 to my 125 Levo earlier in the year. But I've been suffering high pulse and arrhythmia for 3 weeks. I have also been hot and sweaty. Originally I dropped my T4 to 100 and added in 6.25 T3. Felt OK so added a further 6.25 T3 but soon felt worse, as if I missed the 125 levo so I went back to 125 Levo. Felt better at first then the heart went a bit wild. I dropped back to 6.25 T3 with the 125 Levo for the past 2-3 weeks. I've been so stressed about it and suffered a couple of panic attacks in the past week too. I'm now thinking I need to drop that last 6.25 T3 too. I can't put my heart under this strain. It's horrible. I'm exhausted too. I can't believe just 6.25 T3 can be doing this. But it is the only thing that has changed.

[SlowDragon Administrator]

There's no information in your profile or your other posts on wether you have autoimmune thyroid disease (Hashimoto's)

Or any vitamin tests

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also absolutely essential to to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Both Levothyroxine and Liothyronine need good vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

If/when also on T3, make sure to take last dose 8-12 hours prior to test

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

How do you take your T3?

All in one go?

Or as split dose, two or three doses per day?

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

[cahod6103 in reply to SlowDragon]

Hi, thank you for replying. I’ve never been told I have Hashimoto’s so I’m taking it I don’t have. I do have a Vit D and Vit b12 deficiency and I’m having treatment for them. Oh no, my bloods have always been taken late or mid morning, and I’ve always had my medication first, I’ll remember this for the future. I take 75of Levo with 10 t3 in am, then a further 5mcg of t3 late afternoon, that’s what Endo told me to do, but I’m not feeling well at all, going to see consultant re stomach probs next week, so don’t know what will come out of that, my dad had Coeliac disease. X

[siannie]

I did . I was on 75 Levo and 20 liothyronine. Initially I felt great on it , lost weight etc but then started to become really unwell. I saw my specialist and told him I felt like I was dying that everything was shutting down . He said that it sounded like it was a chemical imbalance and I may be unable to tolerate the T3.

I was told to stop it straight away and within a few days started to feel better.

I’m due to see him next week to discuss things - maybe you need to go back and see your GP or specialist to discuss.

[cahod6103 in reply to siannie]

Oh, thank you for replying, that sounds a bit like me, I’m feeling a lot worse than I was before, I don’t see Endo until the middle of March, I think I’m going to ask to come back of the T3, it’s certainly not helping any. I take Levo 75mcg and 10mcg of t3 in am, then 5mcg of t3 late afternoon.

[Hashihouseman]

Without knowing sufficient background about you and your blood levels and with that caveat I’d say based on my experience and lots of scientific data that your t3 t4 ratio is not good! Most t3 comes from deiodinisation of t4 deep in the cells and a small proportion comes from thyroidal t3 which the body adjusts to supplement its particular t4 to t3 activity and capacity. So when replacing t3 in practice start with what the thyroid gland would produce which is seen to be between 3 and 10 mcg / 24 hrs. Also as the sole supply of t4 the thyroid doesn’t dump the kind of doses used in levothyroxine replacement therapy in one go, so try splitting your levothyroxine dose in 2 or 3 (I take 100 split 4 x 25 and my t3 levels went up just by that change alone). I also take 5mcg of t3 split into 3 unequal doses according to my body’s circadian rhythms, but that’s not critical. You may need more levothyroxine and less t3, don’t buy into a t3 biased replacement regime until you have proved you don’t convert sufficient t4, give your body a chance to show what it can do! IMHO the main problem with levothyroxine replacement is trying to take 24hrs worth of t4 supply all at once and then feeling no better or even worse and turning to exogenous t3 dosing at levels that are not physiologically appropriate, they may be for some but not most people! All this will no doubt cause howls of protest from the t3 heavy brigade but we are all different and need to find our own path and theirs is not the most common path so keep it simple and follow the common path, for a while at least, leave it if it demonstrably doesn’t work!

[SlowDragon Administrator in reply to Hashihouseman]

Agree that many of us need 3 small/tiny doses of T3 just in addition to Levothyroxine

Certainly works for me

[cahod6103 in reply to SlowDragon]

Hi thanks for replying. What doses of t3and Levo do you take and how do you take it ? X

[SlowDragon Administrator in reply to cahod6103]

See my profile for full details

[SlowDragon Administrator in reply to cahod6103]

I take 112mcg Levothyroxine at bedtime

10mcg T3 waking (7am typically) 5mcg 8 hours later (3pm ) and 5mcg 8 hours later with Levo (11pm typically)

Strictly gluten free diet absolutely essential and all vitamins optimal, by supplementing

Levothyroxine and T3 always same brands. Levo is Mercury Pharma and T3 is Morningside Healthcare

Couldn't tolerate T3 until strictly gluten free and vitamins improved

After 24 years of terrible ill health on T4, now completely recovered. Only made progress after getting fantastic help, info and support on here

Most important supplements for me

Magnesium

Vitamin D

B complex

Vitamin C

Probiotics

Turmeric

No noticeable improvement but supplement anyway

Vitamin K2 Mk7

Zinc

Selenium

[cahod6103 in reply to SlowDragon]

Thank you, that’s interesting. My b12 and vitamin D levels now seem ok with supplementation, but I’m still feeling unwell. I’m seeing gastro about my stomach, having a few problems just now, my dad had coeliac disease, so maybe a gluten free diet would be worth a try for me.

[SlowDragon Administrator in reply to cahod6103]

Any direct, close relative of a coeliac patient should always be tested for coeliac

Many many people are silent coeliac, i.e. They have coeliac disease but no obvious gut symptoms

The coeliac blood test is however very unreliable. Hence always needs endoscopy to confirm

You must be eating high levels of gluten in weeks before test

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy online for under £20

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[cahod6103 in reply to SlowDragon]

Thanks that’s great info, hopefully the Gastro will suggest testing me, I see him on the 20th of this month, so not too long to wait.

[SlowDragon Administrator in reply to cahod6103]

Make sure to include gluten at every meal until tested

[cahod6103 in reply to SlowDragon]

Yes I will, thank you. X

[jgelliss in reply to Hashihouseman]

I split my T4 (Levo) as well . I feel it works much better for me . I split it 2x/day . I get funny faces when I tell people even my Dr makes funny faces . But who cares as long as it works .

[cahod6103 in reply to jgelliss]

Hi, thanks for replying. What doses of Levo and T3 are you taking and how do you take it ? I’m taking T3 10mcg with 75 of Levo in am, then another 5mcg T3 late afternoon, but I’m feeling terrible since starting on this regime. X

[jgelliss in reply to cahod6103]

So if your on 75mcg T4 it's actually very easy just split your 75 in half AM and PM . It might the be the 10 mcg T3 may be to much for you to dose with all at once too . Why don't you try splitting your 10mcg T3 too in half . 5mcg T3 with half of your 75mcg T4 at 7AM . The next 5mcg At 12PM and the split remaining T4 with another 5mcg T3 at 3PM . Your total dose daily is 120mcg if it where all T4 . T3 is 3xmore powerful than T4 . It's also possible that you might do better with lower dose T3 and a bit higher T4 . You would need to run labs with your FT3 FT4 TSH it helps very much together with your symptoms . It would help identify if your T3 or T4 needs tweaking . It takes months to settle on what works right for you . Slow and steady wins the race . Your body needs time to acclimate to new dose changes .

Journal your BP , Pulse , moods , energy , sleep , bowels , weight , aches /pain etc. They are all very telling .

Meantime nutrients are very vital . They help our thyroid meds work better for us .Vitamins are best kept 4 hours apart from our thyroid dosing's . Vitamin "D" K2 , B-Complex , B-12/folate, Iron if you test low , magnesium , Vitamin "C" Celtic Sea Salt for electrolytes / adrenal support .

Best wishes with your Well-Being .

[cahod6103 in reply to jgelliss]

Thank you, if it works better for you that’s the main thing, as you say why care what anyone else thinks, it’s how you feel that’s important. I take 75 Levo with 10 T3 in am, I wonder if I should try 50 Levo in am , then 25 later on in the day ?

[jgelliss in reply to cahod6103]

That's a great plan . Best Wishes .

[cahod6103 in reply to jgelliss]

Thank you.

[jgelliss in reply to cahod6103]

Your so Very Welcome . I split my larger dose in the AM too and the smaller portion in the PM if it's an uneven dose . If I'm on an even dose than it's half /half .

[SlowDragon Administrator in reply to jgelliss]

I am interested in this idea of splitting Levo as well ......early on, when I was only on inadequate dose of Levothyroxine, it was the only way I could tolerate or increase the Levo dose

I might try it ....after next blood test

Perhaps taking most of my Levothyroxine at bedtime plus 5mcg T3

Then smaller dose of Levothyroxine plus 10mcg T3 waking

Still keeping 5mcg T3 mid afternoon

[jgelliss in reply to SlowDragon]

It's been working very well for me . I can tell you when I first mentioned to my Dr that I was splitting my T4 as well as my NDT . He first looked at me with open eyes and the expiration on his face "WHAT" ??? He then later told me there are no scientific papers to back it . But he didn't oppose me either if it worked for me . The fact is a fact it works for me . And since many tried it too and said it was working for them as well . In fact my Dr started to suggest it to other patients now too .

Best Wishes .

[SlowDragon Administrator in reply to jgelliss]

It makes sense

Naturally if our own thyroid is working we don't chuck out one lot of hormones per day.....

If taking split dose of T3, we are having to fit this in anyway, so it's no more inconvenient to add T4 at same time as T3

[jgelliss in reply to SlowDragon]

Precisely . I don't have to go out of my way at all for splitting my T4 as well . Just as you said I split my NDT too already anyway . There are times that we need to be our own *LAB RATS* . Little tweaks here and there can make *HUGE* difference .

I have a weekly pill tray that I prepack once in three weeks that helps me . I load them up once in three weeks and I don't have to be busy with it for the next three weeks . It takes me about 15- 20 minutes to load them up pending if I have to use a pill cutter or not . It works very well also for those that have to alternate doses .

[cahod6103 in reply to Hashihouseman]

Hi, thanks for replying. What doses of both do you take and how do you take them? I take 75 Levo and 10 t3 in am, then another 5 mcg t3 late afternoon, that’s what Endo told me to do, but I’m feeling terrible since I started on this combination . X