LIOTHYRONINE PRESCRIBED AT LAST: Hello everyone... - Thyroid UK

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LIOTHYRONINE PRESCRIBED AT LAST

JGBH
JGBH

Hello everyone,

Today I saw an endocrinologist, whom I saw privately back in August and had been waiting to see at an HNS hospital. He agreed to let me have 3 months of T4/T3 combination therapy. He did say he was not sure it would make a difference but worth trying because my quality of life was so poor. Did say if it does not improve then T3 will be stopped when I see him again in March next year. So relieved he agreed to the trial but apprehensive that it might not work and also about having to take it.

I am on 100 mcg Levothyroxine (brand Almus similar to Actavis). He prescribed 75 mcg Levo and 10 mcg Liothyronine to be taken twice/day so 75 mcg Levothyroxine and 20 mcg Liothyronine (to be collected from the hospital pharmacy, which I did).

They gave me 50 mcg Levo (Actavis brand, so that's a good brand for me) BUT 25 mcg tablets from Mercury Pharma. I have read Mercury Pharma is not that good a brand. So anyone having experience of this brand, good or bad, please let me have your feedback. I know we are all different and will react to brands differently.

A BIG problem is that the Liothyronine tablets they gave me are 20 mcg tablets that need splitting in half. I have tried to cut them in half with a laser knife and they don't really split equally. Am supposed to have 10 mcg in the morning and 10 mcg in the evening. This is going to be a nightmare and I will never take 10 mcg exactly each time. Wondering is that will skew the treatment somewhat? I did not know I would get these tablets in 20 mcg, the consultant did not say so, otherwise, I would have asked him about that problem. To be honest I was surprised he would prescribe it.

I take my levo at 6.30 am and the endo suggested taking the 10 mcg Liothyronine half an hour before breakfast, then 10 mcg at tea time about 6 pm. Does that sound right to you? I have decided not to start tomorrow, awaiting your useful suggestion/experiences.

Tomorrow,I will also phone the hospital pharmacy to enquire whether they could provide 10 mcg liothyronine tablets... (doubt it) and also whether WORCKHRDT still manufacture 25 mcg Levothyroxine tablets because I am not keen on the Mercury Pharma ones and in the past when I was on 75 mcg Levo I had 50 mcg Actavis brand and 25 mcg Wockhardt and these 2 brands worked best for me.

Can anyone tell me about their journey when they first started taking Liothyronine in combination with Levothyroxine? What side effects did they get if any... was your heart racing? I read about this from people who were taking it. Also how soon did anyone feel any positive benefit, and in what form?

Yes, I feel quite nervous.... So any helpful comments will be truly appreciated.

The endo did explain T3 can make osteoporosis worse ( which I have). I told him I accepted the risk. It's a problem having osteoporosis and taking steroids (prednisolone). So, does anyone having osteoporosis and taking T3 has noticed any serious problems/worsening of the osteoporosis?

While I am here, I need to find out the best Vit D3 to take (my Vit D level went down to 50 so time to increase the level in my blood.

Previously, I was taking Natures Plus (organic) Vit D3 (5000 IU- 125 ug) and Doctor's Best Natural Vit K2 MK-7 with Mena 100 mcg/veggie capsules. I understand there is a Vit D3 spray, which one is it and would it be good enough, giving me 5000 IU? Would it still be necessary to take Vit K 2 MK-7? So again would welcome your feedback.

My latest thyroid function test on 14 November are:

Serum TSH : 0.58 miu/L (0.3-5.5)

Serum Free T4 : 19.8 pmol/L (12.0-22.0)

Serum Free T3 : 3.2 pmol/L) (3.1-6.8)

Many thanks if you feel able to help me.

Best wishes.

104 Replies
oldestnewest

Morningside do 5mcg and 10mcg liothyronine. I get mine from Boots.

When I first started out I was splitting the 20mcg tabs (Teva brand) into quarters. I would advise that you build up to the 20mcg dose. What I did having read up on this site was:

Week 1 reduce levo by 25mcg

Week 2 Add 5mcg lio with morning levo

Week 3 add another 5mcg lio as afternoon dose

Wait 2 weeks then add 5mcg night dose

Wait 2 weeks the inc night dose to 10 mcg

Felt hormonal and bit nauseous a couple of days. Now 3 weeks on full dose and beginning to feel the old me. Bloods to be done in another 3 weeks.

I opted to take a night dose of T3 because T3 has a circadian rhythm and is highest overnight. As long as you go slowly and start low you will be fine.

I started on Teva T3 and was fine but I got the chance of 10mcg tablets of Morningside from Boots so changed to them.

JGBH
JGBH
in reply to Lalatoot

Hi Lalatoot,

Many thanks for your helpful reply. May I ask you if the Lio was prescribed by an NHS endo because you get your tablets from Boots?. I had no choice but get mine from the hospital pharmacy and did not realise they were in 20 mcg tabs until I was at home, and it's a long drive back to that hospital, not my usual local one. Not sure what to do now because I have the tablets (well enough for 2 weeks, they owe me the rest for 10 weeks, so will phone tomorrow morning to see if they could provide me with 5 and 10 mcg tabs).

I see you're taking 10 mcg dose at night. I understood from certain posts that T3 kept people awake if taken at night. That does not affect you?

So, do I understand correctly that for the first week you did not take any T3 just reduced Levo by 25 mcg? Did that make you feel undermedicated? Then week 2, you added 5 mcg Lio which you take as same time as Levo. (what time do you take these? take my Levo at 6.30 am). Then week 3: you took Levo and 10 mcg Lio together? Remained on this regime for 2 weeks, so on week 6 you added another 5 mcg Lio in afternoon (what sort of time?) Then on week 9 you added 5 mcg Lio (so 15 mcg/day) at night (what time?) then 2 weeks later on week 12 you added the final 5 mcg Lio, making it 20 mcg/day) at night. Am very anxious so keen to make sure I understand clearly as am determined to make it work. Am feeling so dreadful. No life at all.

What did your endo recommand? It's so odd the endo I saw was not more informative... although I am grateful and pleased he prescribed it. Of course if the treatment works then he will ask my GP to prescribe it (no doubt I will have another fight on my hands then) but I will be able to get my tablets from Boots, so hopefully more choice regarding brand and dosage.

When you had to split up the tablets (goodness in quarters!) how did you manage it? Were the quarters equals in size? Does it matter if not? Have you regain some energy? How long altogether have you been on this treatment? Endo will only need blood tests when I see him in March 2020.

Sorry I need more clarification... Just nervous and would like a good outcome, regain a semblant of life again if that is possible. Thanks again, much appreciated.

Lalatoot
Lalatoot
in reply to JGBH

I live in Scotland. The endo gave me the 3 prescriptions for 3 months but said I could take them anywhere so I went to Boots. As all prescriptions are free in Scotland it maybe doesn't matter where I take them.

She gave me no instructions as to how to start - she just said reduce levo by 50mcg and take 20mcg lio. I am sensitive to meds so read up on here and made up a plan.

First week I reduced levo by 25mcg. You do not go undermedicated as levo has a half life of a week so is still in your system. I did this because I read on here that if you just started the T3 and reduced your levo the same day you would actually be on your full dose of levo plus the T3 so might be overmedicated at the start.

I take my levo in 2 doses as I am sensitive to it. So 6am I take my first dose levo. I added 5mcg of lio to this for the first week.

The second week I took another 5mcg lio at 4pm (which is when I take my second dose of levo).

Wait 2 weeks then I added 5mcg at bedtime so 3 x 5mcg per day. After 2 weeks again I upped the bedtime dose to 10mcg.

I have been on the full 20mcg dose plus 50mcg levo for me for 3 weeks now and am really feeling the benefits. I feel better and have more energy and spark. I am not back to being completely better but much improved is the expression.

I have a blood test booked for 3 weeks' time. That is 6 weeks after I started on the full dose.

Cutting the tablets with a pill cutter from Boots is possible though a fiddle. Many on here have done it.

Don't get too hung up on exact timings. Do what feels right for you. As long as you start taking in 5 mcg doses and increase them slowly waiting the week then 2 weeks between increases it will be fine. Some people take lio twice a day. Some 3 times a day and some take it all in one dose. It is whatever feels right for you. It doesn't keep me awake at night. Without it I used to wake up about 4 am feeling awful!

JGBH
JGBH
in reply to Lalatoot

Hi again and many thanks for the reassurance.

I have started reducing my Levo from 100 mcg to 75 mcg this morning and will do so for a week then next week will add 5 mcg liothyronine (if I can manage to split the 20 msg tablet in quarters. So am following your protocol. It sounds a sensible way of doing it. Must admit I was quite worried about taking 20 mcg of lio in 2 doses from scratch.

Am hoping it will work for me too.

The endo only requires blood tests just before my review with him in March next year.

Best wishes.

Tennis_junky
Tennis_junky
in reply to JGBH

Hi, just a note to say that reducing my Levo intake from 150 to 125mcg left me with huge withdrawal symptoms. 2 weeks of uncontrollable crying and very bad concentration on the road.

I felt utterly terrible until my body balanced. I do hope your transition is smooth, (and yes I need to push to see a private endo myself). Delighted for you. Good luck and best wishes. Remember it may take a few weeks for your body to adjust.x

JGBH
JGBH
in reply to Tennis_junky

Hi Tenns_junky

Thank you for your feedback and your kind words. Hope you are feeling better now your body has adjusted to the lower Levo dose.

It's only 2 days since I have reduced my Levo from 100 mcg to 75 mcg. No side effect so far. However, I have not yet started taking Liothyronine. I have decided to follow a regimen of first reducing Levo for one week then on second week introduce T3 by 1/4 tablet (will need to split a 20 mcg in 4.... have bought a sharp craft scalpel this morning so hope it will help), once in the morning and again in the late afternoon, making it 10 mcg/day. Stay n this for 2 weeks then increase T3 again by 1/4 tablet for 2 weeks till I take 20 mcg T3. I thought it best to take it slow and easy after receiving much good advice from memners of this wonderful forum.

Since reducing Levo I have slept better, though not sure if it's a true sice effect or a simple coincidence. It also looks like my resting heart rate is lower.

Best wishes to you too, x

vocalEK
vocalEK
in reply to Lalatoot

I would think that unless your FT4 was at the very top of the range, you would not be overmedicated by adding T3 without reducing your Levo. My GP did not lower my levo dose until I had been taking the T3 for 5 months. She had already lowered my T3 dose from 25 mcg to 17.5 mcg. (Half of a 25 mcg tablet plus a 5 mcg tablet). The reason she lowered levo was because my TSH went down to 0.01 uIU/mL when I started T3 and stayed there, even after she lowered my T3 dose. My FT4 started at 82% through range and went up to 91% when I began taking T3 (slowly). When I worked my way up to a full 25 mcg tablet of Cytomel, my FT4 dropped back to 82%. But my FT3 was up to 92% through range!

When she reduced my levo from 175 mcg to 150 mcg, my FT4 went from 82% to 73% through range. Reducing the dose to 125 mcg moved my FT4 down to 50% through range. But my TSH went up to 0.07 (0.300 - 4.200 uIU/mL).

Whopee! But now my FT3 is only 46% through range. Some of my hypo symptoms that were disappearing when my FT3 was at 91% through range (on 25 mcg of T3) have begun sneaking back. So she has made my pituitary gland healthier, but it was my thyroid gland that was giving me health issues.

Lalatoot
Lalatoot
in reply to vocalEK

I would not have lowered my levo so much but I am playing along at the mo. When 6 weeks bloods are done then I will have the discussion with her about how much leeway I have to increase T4 and T3. I am going to see if she will allow me to inc levo by 25mcg and T3 by 10mcg if I think it necessary and blood tests support this. I only see her every 4 months so hoping she will let me direct the GP. I can but hope.

Scrumbler
Scrumbler
in reply to JGBH

Lio never kept me awake even at 20 mcg at bedtime. Many people find it improves their sleep.

JGBH
JGBH
in reply to Scrumbler

Hi Scrumbler

Thanks for your feedback. So you take 60 mcg of liothyronine? Is that in combination with Levothyroxine or as a monotherapy?

How long have you been on T3 and how soon did you feel any improvement? At what dose did you start?

Scrumbler
Scrumbler
in reply to JGBH

I take NDT now but was never better than on 60 mcg Lio - 20 mcg every 8 hours precisely.

Can’t tolerate synthetic T4 / Levo. A lot better on NDT but even the T4 in that isn’t brilliant for me.

Oncologist about to transition me back to T3 when neuro investigations complete for other health issues.

JGBH
JGBH
in reply to Scrumbler

Thanks. Do hope your investigations will soon be over and that you can get back on T3.

Best wishes.

Hi JHGB I find almus/actavis best type of levo for me as I can't tolerate acacia powder which is used as a filler in some levo brands. I take 100mcgm and now also have been prescribed T3 on NHS after 2 years of supplying my own.

I have been fine with Uni Pharma (Greek) T3 and Thybon Henning from Germany. When I got my first NHS prescription I spoke to the local pharmacist at Boots and explained the issue with fillers, so wouldn't tolerate Morningside and Mercury Pharma T3. I have been give Sigma Pharma T3 and have been fine.

I worked my way very slowly from 5 mcgm in morning to 5 in am + 5 in evening, then added in another 5 in am, so I now take 10 mcgm 7 am and then 5mcgm evening before bed with my 100mcgm levo.

Everyone is different about how they get on with what dose and when, but I wouldn't start with 10mcgm straight away. and allow a few weeks before then increasing to 10 then 15 and then 20.

I wouldn't be too hung up about not being absolutely accurate with splitting tablets.

I have always had to do it because there are so few T4 and T3 I can tolerate.

Do be sure that Vit D, B12, iron, ferritin and folate levels are all optimal for best success. See Seaside Susie on here, she is very good on the vitamins.

JGBH
JGBH
in reply to crimple

Hi crimple,

Thank you so much for your encouraging reply.

Regarding the brands, I had no choice but to have what the hospital pharmacy could offer me. It had to be the hospital pharmacy because it's the first prescription isued by the NHS endo. They don't have a Boots pharmacy at this hospital. Suppose I will have to make do and so hope it will help me. The thought of the endo stopping it after 3 months is worrying, having been trying for SO long to get help. Always such a fight when one feels so ill it's cruel.

Everybody has been so very helpful in their replies, so lucky to have joined this forum, wonderful informed, caring people. I can see everyone recommended to start slowly, so will definitively do so. Why can't endos recommend this approach? Perhaps they hope we won't cope with the treatment so that's their way of stopping it? Forgive my cynicism, but after years of fighting for treatment I have lost any faith in their ability.

Yes, I self-inject B12, usually take Vit D3 (but run out and need more - am awaiting to hear from Seaside Susie and other about the best type before reordering), got enough follate as I take folic acid every day to help with the B12. My ferritin is too high because I have high inflammation markers (have RA and on new treatment so hope it will kick in). Iron still within range but on low side, however, haemoglobin level, mean cell haemoglobin concentration, mean cell haemoglobin level are below range and serum transferrin level are below range. Can't tolerate iron in tablet form but had an iron infuson over a year ago, have asked my GP to refer me back to haematology for another iron infusion if possible, but haematologist is never keen... another battle. Of course too much iron is dangerous, but I do have some fform of anaemia due to RA.

Hope you carry on improving.

bristolboy
bristolboy
in reply to crimple

Hi crimple, I had a question for you, so rather than hijack and confuse JGBHs post, I've just sent you a PM.

How considerate 😊. Hijackers can cause chaos x

SlowDragon
SlowDragonAdministrator

I get Morningside Healthcare 20mcg tablets. Reasonably easy to cut into 1/4's using sharp craft scalpel

Morningside has just launched 5mcg and 10mcg tablets.

Recommend you start on only 5mcg in morning

Increase slowly by 5mcg steps

Personally I take 10mcg at 7am, 5mcg at 3pm and 5mcg at 11pm (after much experimentation) ....more on my profile

Adding T3 was a complete life changer

But initially felt much better and worse ....so don't be surprised if it's a bit of a mixed bag after about 4-6 weeks ....it should then improve

JGBH
JGBH
in reply to SlowDragon

Hello Slowdragon,

Appreciate useful reply. thank you. Are you on T3 monotherapy or combined T4/T3 therapy. Will check your profile tomorrow as too tired now and ready for bed. Thanks for the advice and comforting words. it all helps.

I only hope it wil work... and concerned 3 months might not be long enough to show any reasonable improvement. The endo did say if no improvement then the treatment will stop. I replied by saying that if there was a small improvement then it was worth it... but I know, in the end he wil decide.... I can plead but we know the score. if it works and he asks my GP to take over the prescription I already know I will have a fight (again) on my hands! We'll see.

Hope you carry on improving.

SlowDragon
SlowDragonAdministrator
in reply to JGBH

Full details on my profile.

But yes. Levothyroxine and T3.

The difference adding T3 was pretty immediate, went from barely managing 5 mins very slow walk, to walking a mile at normal pace a week later.

JGBH
JGBH
in reply to SlowDragon

Thanks. The results sound astonishing! Let’s hope it will work for me too.

SlowDragon
SlowDragonAdministrator
in reply to JGBH

I had spent a year after endoscopy confirmed severe gluten intolerance (despite zero gut symptoms) getting all vitamin levels optimal.......BEFORE getting T3 added

jgelliss
jgelliss
in reply to SlowDragon

I found that I can not dose with more than 1/4 grain NDT at any time .That is about 2.25mcg T3 . I was told by my Endo when T3 was added to my T4 to dose with 5mcg at a time . It was a disastrous experience for me . It's possible too that after my TT I was dosed with T4 only for most of the years and my adrenals couldn't handle 5mcg T3 at one time . But 2.25mcg at one time is fine . Everyone's tolerance is somewhat different . And like you say SlowDragon it gets better with time . Never give up trying.

I take 60mcgs a day of Liothyronine. No levothyroxine at all.

I take 40mcgs of Lio on waking and wait one hour before eating or drinking anything. No problem with racing heart or signs of over-stimulation at all.

I take another 20mcgs of Lio at eleven on when I get into bed. Again, no racing heart and no signs of over-stimulation. I have been doing this for four years now.

It has given me my life back. My lost hair has grown back, I have slowly, slowly lost the weight I gained. I feel clear-headed and energetic. I actually do best on Mercury Pharma Lio and it suits me very well.

I have a Dexa bone scan once a year and my bones are above average density for my age (60 next month).

Hope this helps. F.

JGBH
JGBH
in reply to fortunata

Hi Fortunata

Thank you so much for your reply. So pleased you are getting the benefit of Lio. Yes, I have been losing my hair as well and much worse symptoms of having no energy at all, feeling dead!! (Not exagerating)

However, your regimen is different from mine since you only take Lio. Mine is a combination therapy, so slightly different in taking it, perhaps. Nevertheless, I appreciate your feedback very much. It is encouraging when one is feeling so ill, very low and at one wits end.

I do have osteoporosis, especially in one of my hips and spine. Am 73 and have rheumatoid arthritis, so worrying but I will take the risk. At my local hospital they do not offer Dexa scan every year....

Hope you carry on improving.

Scrumbler
Scrumbler
in reply to fortunata

Yes. 60 mcg was my ‘ideal’ dose too

PS. I wouldn’t worry about splitting your 10mcg tablet exactly in half. As long as you’re getting your 20mcgs a day, a mcg over or under shouldn’t make a huge difference.

JGBH
JGBH
in reply to fortunata

Thank you for replying.

angela54p
angela54p
in reply to JGBH

Hi Fortunata,

I'm curious as to what your thyroid labs look like. I've been taking 2gr. of Armour thyroid, along with 15mcg of Lio. My Dr is concerned because the TSH is suppressed, but both my free T3 and T4 are only in the low normal range. I did not tolerate Levo well at all. I'm hoping that she will allow me to increase the Armour thyroid instead of decreasing the Lio as she wants me to try. Is your TSH suppressed, and obviously if so your physician isn't concerned? I'm 65 yo my dexascan was good, and I still wish I had more energy, but then I also have fibromyalgia, so I'm desperate to keep my current Lio dose. I wish I could increase it.

fortunata
fortunata
in reply to angela54p

My TSH is usually about 0.02. My T4 is non existent and my T3 is usually in the upper range.

You can buy pill cutters in pharmacies and on line....they are not expensive

I wouldn't be concerned if the split isn't exactly 50/50...a tiny bit of T3 either way will be ok.

You missed out the FT3 range (ranges vary from lab to lab) can you edit your post to include this please. It is an essential result and often ignored by medics.

A year ago you posted these results...

Serum Free T4: 20.9 pmol/L (12 - 22)

Serum Free T3: 3 pmol/L (3.1 - 6.8)

Your conversion is poor and the addition of T3 should definately help

I hope 3 months will be enough time to successfully titrate T3....it can take very much longer depending on your individual need. Your GP should know this but he will be a rare creature if he does! This is not being negative....just realistic.

I take 131.25mcg T3 in a single dose at bedtime. I have the Dio2 snp/homozygous and Thyroid Hormone Resistance and it took me about18 months to find improvement. I started this journey on levo, moved to T4/T3 and now self-medicate with T3 only. I'm 74 so we mustn't focus on age!

But firstly....best of luck, a trial is more than many patients are offered.

Hi DD,

Thanks for replying. Yes will invest in a pill cutter, although I understand they're not that good, but...

Thanks for pointing out I did not indicate range for FT3, rectified now. (3.1-6.8).

You take a lot of Lio. Which brand do you take? Are you seeing an NHS endocrinoligist, if you don't mind my asking?

Three months is not long... I know but that's all they offer as a trial. I have been trying to get T3 added to my levo for a very long time. My local hospital refused for me to see an endo because they have a firm policy of not prescribing Lio!! So had to be referred, at my insistence, to another hospital quite a way away. It's been a long hard battle. Even today, the endo was saying we might wait a bit longer to see if the new biologic treatment for my rheumatoid arthritis would help me, but I told him I simply could not go on any longer, which is true. He could see my quality of life was very poor so agreed to the trial. Had I said nothing I would still have no Lio.

Hope you continue to improve.

DippyDame
DippyDame
in reply to JGBH

I understand how you feel, I reached the point about 3 years ago where I could barely function.

Thanks for adding the FT3 range....it looks as if your problem lies there. Your FT3 is only 2.7% through the range, ridiculously low, little wonder you feel so unwell. Medics tend to diagnose/monitor usingTSH which has been proven to be entirely wrong.... after an initial diagnostic test.

I suggest your T4 is part of the problem, it is not being converted into the active hormone T3 which means your cells (where it does the work required of it) are depleted of the hormone. The trillions of cells in the body all require a constant and adequate supply of T3.

Your conversion may be impaired by low nutrients i.e Vit l B12, Vit D, Folate and Ferritin, or you may have the Dio2 polymorphism....increasingly problematic if it is homozygous.

If you can, I suggest you have the Dio2 test done, not all medics will understand it's significance....but it does convince some that T3 is needed.

I have always self medicated with T3....I wasn't prepared to walk through the treacle that is NHS treatment! My advice came from here and I did a huge amount of research/ reading.

I did ask to see an NHS endo (my request), in honesty more out of curiosity than expectation, and he was clueless....sad but true. He suggested I should just continue self medicating because it seemed to be working but added the caveat that it wouldn't be his advice!

I have huge respect for NHS staff....but not when it comes to thyroid treatment. If it were otherwise this amazing forum would not exist!

If I were you I would first optimise the nutrients and have the genetic test, Your results show poor conversion but a Dio2 polymorphism may convince an open minded medic to listen.

The trend is to cut T3 prescribing due to the horrendous price hike in recent years....the nonsensical belief being that LT4 will solve the problem. It's a battle against financial clout and political will. The issue has been raised in both Westminster and Holyrood....but mainly fell on deaf years!

Medics are leaving patients waiting for weeks/ months when instead they should be getting on with the job. They cannot do that unless they have been properly trained and given the "tools" to do that job...and sadly they are not!

You can improve...but as you are discovering you need to take control.

It really isn't as frightening as it sounds....you've now taken the first steps.

We are all here to help....just ask.

Very best...

DD

PS pill cutters are fine!

JGBH
JGBH
in reply to DippyDame

DD, many thanks again! It’s a minefield ...

Don’t think they would accept testing for Dio2 because of their concrete mindset and cost probably. Something to keep in mind for later perhaps.

Yes I try and improve my vitamin levels.

This forum is wonderful and the people so knowledgeable and kind. I will no doubt keep asking for advice.

Best wishes to you.

SlowDragon
SlowDragonAdministrator
in reply to JGBH

I found that being able to show I had Heterozygous DIO2 gene variation did help get individual funding request approved, but I like in relatively enlightened CCG area

What a post code lottery. My Heterozygous DIO2 gene variation hasn't helped me. My Endo told me he basically couldn't waste the time preparing an Individual Funding Request for me because he very much doubted it would be approved. This despite me improving immensely on T3 following a trial he instigated 3 years ago now.

My CCG though is far from enlightened. It remains in the dark ages.

Carna
Carna
in reply to JGBH

This is the best pill cutter I have found for my 20mcg T3 :

smile.amazon.co.uk/gp/produ...

I do agree with others though that it won't matter if you don't manage to do an exact cutting in half as your daily dose will still only be 20mcg.

I have read the thread with interest and will now try taking either a small amount of my T3 at bedtime or my Levo to see if it will help me sleep as I really struggle to get a decent amount most nights.

JGBH
JGBH
in reply to Carna

Hi Carna, Thank you so much for the link. I have got something similar as well as a sharp craft scapel as recommended by another mmember of the forum.

Am taking 10 mcg T3 with 75 mcg T4 at 6.30 then 5 mcg T3 in the afternoon. Next week I will add 5 mcg at bedtime then will carry on inceasing T3 dose slowly until I take 40 mcg T3 as prescribed by the endo.

Hope you will find a solution that will help you to sleep. I too can take ages to fall asleepbut at times it's easier.

Have you had any improvement so far?

Best wishes.

Carna
Carna
in reply to JGBH

Not yet. If I don't fall asleep straight away I don't nod off until 4am and then sleep so deeply until I have to get up and feel rough. If I do manage to sleep as soon as I go to bed I am awake around 3am for an hour or two before I manage to get back to sleep. It is a real problem for me. I rarely feel rested.

I find mercury pharma is best for me with levothyroxine the other brands made me feel dreadful and the pill cutter is great, if you centre if up in the V shape of the cutter you should be fine. Only on levo because hospital and GP refuse to prescribe t3

. I have some from Germany but dont want to start yet incase source dries up after brexit.

JGBH
JGBH
in reply to Dustpan

Thanks for the tip. Hope I will cope. Sorry you have been refused T3. It took me ages and going to a different hospital, not my GP suggestion but I requested it. Good luck if you try again.

You can buy a tablet cutter at your pharmacy. I suspect pharmacy can only give you precisely what was prescribed.

Quite a lot there, but totally understand all the questions. I will just address a couple of things for you, which I hope will help. You can get a pill cutter in most chemists, very simple to use. Also for the oesteoporosis, I take the Floradix calcium and the K2/MK7. Get outside in the daylight as much as possible for the vitamin D. Keep note of your heart rate because of the T3. If you are concerned, you can get a pulse oximeter through somewhere like Amazon, and if very concerned, tell your endo. Good luck!

JGBH
JGBH
in reply to Pinkie-pie2

Hi and thank you for your reply. Fingers crossed it will work.

Hi, so pleased you have been given a trial of T3 - good luck with it. I take Mercury Pharma Levo and have never had a problem, the only one I can't take is Teva brand like so many others on the forum. I have a pill cutter, bought from Asda for £2 - does the job fine.

JGBH
JGBH
in reply to DoeStewart

Hello and thank you for your kind words. Keeping fingers crossed.

Hope you carry on improving.

Best wishes.

Hello.

I am on T3 only as t4 just didnt work after so many years of it.

I know feel i have a life.

I take mine morning and then afternoon around 2pm.

You will be fine. Think positive.

Merry Christmas.

JGBH
JGBH
in reply to Wate

Hi

Thank you for replying. Pleased you’re feeling better.

However you’re on T3 monotherapy and am starting on T4/T3 combination therapy so it’s different but I appreciate your feedback.

Merry Xmas to you.

I had a few brands prescribed by the NHS. Sigma 5mcg. I was terrible on this brand. Skin issues. Then they prescribed Mercury Pharma 20mcg which was impossible to cut into quarters. Finally I got Mayne Pharma 5mcg. This has been the best.

I take 75mch Wockhardt liquid Levothyroxine plus 5mcg T3 twice a day. The Wockhardt is a named brand on my Levothyroxine prescription. If the chemist ever has a supply issue with Wockhardt they can call Wockhardt customer services in Wrexham. They carry safety stocks tablets and liquid Levothyroxine and will despatch your prescription to the chemist direct without any charges. I actually called Wockhardt myself to find this information out.

I was originally started on ThyBon Henning 20mcg and cut into quarters. This I feel is by far the best T3 I’ve taken, for me anyway.

So, Mayne Pharma 5mcg you could take 2 of them if you find it difficult to cut accurately. At least then you know you have the correct dose each time. Be careful as 10mcg twice a day may be a high dose to start. If you feel over medicated then it can always be reduced. Do not let them take your prescription away until you’ve trialled it for a decent length of time. They need to help you reach your optimal levels first.

SlowDragon
SlowDragonAdministrator
in reply to McPammy

Hi McPammy

Did you notice on posts last few days...Morningside Healthcare are now making 5mcg and 10mcg tablets

Might suit you ....might not .

McPammy
McPammy
in reply to SlowDragon

Oh wow. No I hadn’t noticed. I’ll enquire about it next time my T3 is due. Thank you!!

Hi

Many thanks for your useful information.

I will start taking 5 mcg twice/day and building up as kindly advised by many. Wonder why endos are so badly trained. Not sure how I will be able to split the 20 mcg tablets into quarters... bad enough to split in half.

It’s a 3 months trial... so you don’t think it’s long enough? How long should it be before they decide to stop my prescription if they think it’s not working? Really worried.

Best wishes.

Hi again,

If you feel OK/better on the 10mcg T3/day, you can report back at 3 months & they will hopefully continue it. I.e. You obviously need some additional T3.

Just continue to to gradually increase if that suits you...

I got a Safe & Sound Health pill cutter/crusher/storage from Boots and it cuts my 20mcg T3 pills in half pretty well. You can also store your half in the bottom if you wish. I am still some way away from finding the dosage that works for me but on being prescribed T3 I immediately started on 10mcg in the morning and 10mcg in the evening. Initially I felt a massive boost but that was before the reduced levothyroxine dosage took effect. One thing I did experience was a headache every day for 6 weeks and can't find anything other than beginning liothyronine to attribute it to...

I have had heart palpitations and weird beats for years now and certainly have noticed these since beginning liothyronine but since blood tests don't indicate over treatment, I think it may still be due to too little thyroid hormone.

In myself I feel a little better on liothyronine and would recommend giving it a try and hope it has a beneficial effect for you - good luck :)

Headache may be a detox' reaction from T3 helping your body function better ?

Try lots of water, herbal teas, parsley, or anything else you know suits you to help body detox'....

So pleased for you ! Am sure it will help loads !

Once read here about a lady who nibbled on her T3 tablet throughout the day ! When using a pill cutter you can dab a moistened fingertip to gather the crumbs - job done.

Taking T3 is not a problem if you are aware of your body. Easy to reduce if you feel over- medicated ! ( heart rate/pulse /temp)

I take 75 mcg T3 in one go in the morning - hubby takes 25 morning and before bed ...

Good Luck ! X

JGBH
JGBH
in reply to Marz

Hi Marx

Thanks for getting in touch.

Yes, at last.

I have decided to reduce my levo from 100 mcg to 75 for a week then will try and split a 20 mcg lio tablet in quarters and take 5 mcg lio twice a day for 2 weeks then build up to 15 mcg/day then full 20 mcg/day.

Someone suggested this approach and I think it might work for me, not getting dreadful side effects. Will see.

Are you on T3 monotherapy?

Are you both feeling well on that?

Hope you’v settled back in the UK.

Take care. X

Yes we are both T3 only ! At 80 and 73 we do not take any other medication ! Really surprised our new surgery ! They are now learning to read thyroid blood tests !

Your plan sounds good. However as your FT3 is so low I personally do not think you need to reduce T4 - but that is just me talking.

Maybe greygoose has some wisdom on the addition of T3.

Hope it all goes well ... x

JGBH
JGBH
in reply to Marz

You’re both very lucky only tasking T3 as medication!

Unusual for a surgery (GPS) understanding thyroid readings... they still insist everything is fine even though the results are often close to bottom of accepted range or even below!

Does your surgery prescribe T3 to you both?

I really believe it’s important to reduce Levothyroxine first for body to adjust (Levo half life is a week) then gently introduce liothyronine.

Take care X

Marz
Marz
in reply to JGBH

Yes but as your FT3 is almost at the bottom of the range then adding,a little will do no harm ...

No we are not prescribed T3 here - we buy on-line. In Crete we had a prescription.

greygoose
greygoose
in reply to Marz

Sorry, nothing to add. :)

Marz
Marz
in reply to greygoose

Oh - just remember posts where you suggest there is no need to reduce T4 before adding T3 when FT3 result is low. I must be confused 😥

greygoose
greygoose
in reply to Marz

No, not at all. That's what I believe. But, as the OP seems so convinced that you should reduce it first, I didn't think there was much point mentioning it. :)

Marz
Marz
in reply to greygoose

Thank you ! Glad I am not going mad !!

greygoose
greygoose
in reply to Marz

No, you're really not. You have a very good memory. :)

shaws
shawsAdministrator

When T3 was added to T4, even the first dose seemed miraculous and it calmed everything in my body. Scientists have also proven that a T4/T3 combination works well for many people.

I didn't need to see the Cardiologist again and just before the addition of T3 he was thinking of putting an implant in heart to try to figure out why I had severe palps on T4 alone.

I wish you success. I use the following for splitting tablets, although as your taking twice a day it doesn't really matter if both halves aren't perfect as you will be taking one tablet daily. I've never split does as the purpose of T3 is to saturate the T3 receptor cells.

amazon.co.uk/Safe-Sound-Pil...

You can add it after you make a small order from Amazon.

JGBH
JGBH
in reply to shaws

Thanks Shaw! Have decided to follow someone ‘s regimen of slowly adding T3 to avoid any nasty side effects. So week one starting this morning: only reduce Levo from 100 mcg/day to 75 mcg/day. Then next week introduce T3 but only 5 mcg twice per day for a couple of weeks then build up slowly and gently to 20 mcg/day in 2 doses. Hope it will work, fingers crossed.

However have just realised endo prescribed 20 mcg. Twice per day that would be 40 mcg/ day!! Too much I feel at this stage. Have phoned his secretary and left a message. He did say 10 mcg twice per day therefore 20 mcg/day!

So more sorting out to do!

Best wishes.

shaws
shawsAdministrator
in reply to JGBH

Yes, its sensible to work up slowly. Just in case you haven't read the following which is from one of TUK's Advisers (deceased).

naturalthyroidsolutions.com...

I think UK only provides 20mcg of T3. Others from elsewhere seem to be 25mcg.

In the link above Dr Lowe states that small increases can be added every couple of weeks.

I take mine once daily and it makes your life freer as we don't have to worry about taking a second dose during the day but everyone has to decide what may be best for him.

T3 has such a short life - I have to split my dose into 3 times per day otherwise i would slump later on.

Also 40mcg of T3 all at once would make my heart explode!

Just shows how we are all different and have to work out what works for us individually!

Just a note for the D3 - I take 5000 IU daily from ParmaNord ordered online. They have a discount for over 65 years old. They are really good and deliver fast.

JGBH
JGBH
in reply to Judcop

Thank you!

SlowDragon
SlowDragonAdministrator

Recommend wearing a Fitbit or equivalent to give good digital and printable records of resting heart rate

On almost any dose of T3 TSH frequently becomes suppressed....then medics want to lower dose

If you have low heart rate you can argue against dose reduction

JGBH
JGBH
in reply to SlowDragon

Am wearing a Fitbit but not sure out to print results out but it’s on the Fitbit anyway so can be seen.

My TSH is quite low anyway , having no thyroid.

SlowDragon
SlowDragonAdministrator
in reply to JGBH

You should get emailed weekly Fitbit summaries

I keep all these in a computer file

When my TSH became too suppressed for GP's liking last year, I agreed to trial very small reduction in Levothyroxine

Resting heart rate before reducing was 54-58 (i.e. Already low)

But after 12 weeks with 12.5mcg reduction in Levothyroxine resting heart rate dropped to 46-50.

Exactly same results when reduced T3 from 20mcg to 15mcg. TSH didn't rise at all, infact on reduced Levothyroxine it dropped even lower

I now just ignore low TsH and take 2 or 3 printed weekly summaries from Fitbit in to annual review.

JGBH
JGBH
in reply to SlowDragon

Yes I can see results on Fitbit but not sure how to print it . My printer is also temperamental.... but not really able to sort it as am a technophobe! Too stressful for me... I know it sounds stupid but that’s a fact. I manage simple stuff on laptop and phone.

shaws
shawsAdministrator
in reply to JGBH

I quite understand 'stressful' but I think its caused because we're not yet on an optimum dose and by trying to find out why we're not improving or we're not converting T4 to sufficient T3. T4 being inactive (it has to convert to T3) T3 is the one which is needed in our millions of T3 receptor cells.

SlowDragon I didn't know that you could argue on a low heart rate. Recently mine has been as low as 48 and last week 52. Blood pressure 120/70 and temp averaging 36.2. Due to see Endo following blood tests in Jan to see if I need a change to my combination T4/T3 dose.

SlowDragon
SlowDragonAdministrator
in reply to Musicmonkey

Do you have a Fitbit..or equivalent

Print off 2 or 3 typical weekly summaries

Shows how physically active you are (or not)

Plus shows resting heart rate

Hi JGBH, I hope you are ok.. I am on T3 Lio 30mcg daily, I take 10mcg 3 times daily and Levothyroxine 75 mcg once daily. I have been on this combination now for nearly a year with some tweaking in between. I can honestly say that I have good and bad dsays with the combination, and are still symptomatic, these tablets are not a magic potion and will not 100% cure us, but hopefully just mask some of the dreadful symptoms we get.. Endocrinologist has said it could take up to two years for this combination to work to really kick in

These are still the symptoms I get =

Violent headaches daily

Awful skin itching

Dry skin

Nausea

Numbness around the face

Complete loss of feeling down my right outside of thigh

BRAIN FOG

Emotional

Depressed

Short tempered

Hair loss, especially eyebrows

unable to concentrate

No appetite

hoarse voice

finger nails splitting and loss of halve moon in the cuticles

Constant feeling of the flu, and runny nose

Generalised muscle pain

Dry eyes

Bleeding mouth gums daily

all of these symptoms even on the T3/T4

I take Pro D 3 Vitamins from the GP, so the conclusion is I still don't feel well, some days I am very confused and only yesterday had an accident in the car, so I've now dicided not to drive when i'm this vulnerable and confused. I have now asked my Endo consultant to be referred to Christie Hospital in Manchester, with a Professor Trainer who is excellent, as my recent Endo has said I am a very complex patient and not tolerating the meds , plus she doesn't seem very knowledgeable, as the questions I ask her she is unable to answer.. She too has mentioned O osteoporosis and Arterial Fibrillation of the heart if we take the T3 for toom long, but I totally disagree with her as some people can not take T4, plus there is no actual evidence that it causes these problems..

I hope I have helped you, just continue with the T3 /T4 and hopefully it will work for you,

I too have been on just T3 and it was amazing for the first few months , but then I didnt have ant T4 reluctantly went back on it,, If the cobo doesn't make me any better i will asked to go back onto just T3 again..

Good luck

just ask me any questions if needed and I will try to help, also Ive been struggling for 9 years now!!!

kind regards

Bubba

JGBH
JGBH
in reply to bubbatetley

Hi bubbatetley

Thanks for your helpful feedback. Taking T3 is not that simple. Yet it seems to be easy for some people. I suppose if one has a complex medical history it becomes more difficult to regulate every function smoothly.

At least, getting some relief is a bonus.

Please let me know if you go to the Christie hospital to consult this professor.

Sorry but feeling extremely tired so it’s a short reply. Will pm you in next few days when feeling less exhausted.

Sorry about the car accident... I only drive locally in places I know well nowadays, no more long distance driving.

Take care.

Hello JGBH

As for the tablet splitting problem I understand completely but luckily was given a pill cutter by the hospital pharmacy, perhaps you could get one. They are brilliant little things, a plastic box with inside a place for the pill to slip into and when you bring the lid down the sharp cutter in the top of it splits the pill - marvellous.

Also, if you've been given the T3 pills that you are supposed to dissolve, they are even more difficult to split. I got round this by pointing out to the GP pharmacy that they cost the surgery far more, because you have to dissolve the whole pill then throw away the unused half if only needing half a dose.

I can't comment on combination as I only have T3 and my starting dose was 20mcg like you, but without any T4, then gradually increased.

Best of luck and I hope you soon feel much better

JGBH
JGBH
in reply to thyr01d

Hello thyr01d

Thank you for your helpful comments. I will invest in a pill cutter and hope I will manage to split the tablets more or less in equal doses.

So you are on T3 monotherapy and it seems to be working for you. I do hope adding liothyronine will help me because I have been having a pretty poor time for a very long time and ccan't cope like this anymore. So fingers crossed.

Best wishes.

thyr01d
thyr01d
in reply to JGBH

Hello again, see if you can get a hospital pill cutter, I have one I bought from the chemist and it's a struggle with that as well.

I really hope that the T3 will help you, it is dreadful struggling along for so long, if it helps even a little you will be better able to deal with the illness, medics etc and get the help you need.

Very best wishes

JGBH
JGBH
in reply to thyr01d

Thank you so much. Best wishes to you.

This is interesting, as I too was on 100mcg of Levo. Then changed to 75mcg Levo and only 10mcg a day of T3. I’m putting on weight and TSH gone up, so maybe I need a dose more like yours.

JGBH
JGBH
in reply to JaneyJaney

Hi. Sorry I can’t give you an answer. Perhaps if you write a post experienced people would be able to help you. This is a great forum.

Good luck.

Hello JGBH, I started by my own choice with the combination of 100 levothyroxine and 5 mcg of liothyronine since last November 6th, yes, I felt less mental fog and my memory has improved, I have not had palpitations yet.

The same as the T3 tablet almost crumbles when it is cut, so I have to calculate.

A new symptom I have is persistent pain and stiffness in the jaw and neck, but I almost believe that the parathyroids (which were not removed) no longer work well.

I wish you feel much better with the change.

JGBH
JGBH
in reply to Lois71

Hi Lois, Thank you for your feedback. Which brand of liothyronine are taking and do you have to split the tablets? Do you take it at same time as Levothyroxine or?

Hope you continue improving. Am keeping my fingers crossed it will be helping me.

Best wishes.

Lois71
Lois71
in reply to JGBH

Hello, the brand is Tryotex 10 mcg, I split them with a metal spatula, almost always half wasted, but fortunately in my country it is relatively cheap.

And yes in fact I took it in the morning at the same time as levothyroxine.

JGBH
JGBH
in reply to Lois71

Hello Lois,

Thank you. Where do you live? I am not familiar with that brand of liothyronine.

You can you buy it over the counter wirhout a prescription from the doctor?

Lois71
Lois71
in reply to JGBH

Hello again, I live in Mexico and I don't need a prescription.

JGBH
JGBH
in reply to Lois71

Hello Lois, Ok you live in Mexico. I have just read your "medical history". You have been going through a lot. I hope you will improve and regain some kind of quality of life. At the moment, and for quite a few years now, I have had a poor quality of life too, so understand what this does to one.

Best wishes.

How is the addition of T3 going for you?

JGBH
JGBH
in reply to Marz

It’s going slowly... decided to only take 5 mcg twice per day for a week then 10 mcg in am and 5 mcg in pm the following week. Since I take more I feel my heartbeat racing... so not sure what to do. However o have a nasty cold, feeling pretty rough and on antibiotics so perhaps that’s the problem.

Do hope i can find the correct dose and that it will make a difference. If only!

Marz
Marz
in reply to JGBH

I would just try 5mcg daily to see how you go for a week then increase and take the second 5mcg for another week or so and see how things are for you. The heart needs T3 and as you have had Low T3 for a long time the heart may need time to adjust and settle.

Sorry about your cold - hope it's better soon ...

JGBH
JGBH
in reply to Marz

Thank you Marz. Will go back to lower dose for a while longer. x

I agree with Marz - best to start really really really slowly: 5mcg per day is plenty to start with, then once you're taking that without palpitations you can increase.

Also to reassure you that I personally find Mercury Pharma the best for me - I've been taking it for around 10 years - Morningside gave me terrible heart palpitations and explosive anger issues! I've also tried some other brands & size tablets (not through choice) and some didn't work at all!

And re' using a pill cutter: I cut 20mcg tabs into halves of 10mcg and quarters of 5mcg, so that I can take 15mcg at a time. It is really fine if the pieces aren't entirely accurate, especially if you cut up one pill at a time so it evens out.

I would recommend that you persevere with a very small dose to start and only move on once that dose has completely settled.

If you're getting a racing heartbeat now I would rein back to a smaller dose and see how you feel - more is not necessarily better to start with!

Also, don't rush into swapping brands/sizes of tablet, until you are absolutely certain you've achieved the best/most from that first brand.

Take your time - I know that we are all desperate to be 'well', but I've found that:

slowly slowly

catchy monkey

definitely pays off with T3 - it's potent stuff!

Hope that your cold gets much better soon - are you taking Vitamin C & using Olbas Oil or equivalent?

Happy Christmas!

P.S. Pill Cutters available from Boots - I find that Mercury Pharma T3 splits relatively well into 'quarters', & don't worry too much if some bits are slightly bigger than others. Don't waste any crumbs!

I was also given a Pill Cutter in Hospital & it's no better or worse than the one from Boots.

Also, if 5mcg is OK but two times 5 mcg is too much, try the 2nd dose only every other day....

Also, I know that the 'official' line is that T3 can make osteoporosis worse, but I had osteoporosis BEFORE taking T3, and I personally think that it's the other way around!

I can't quote any scientific studies showing that, but I think that it may be a chicken & egg scenario - it makes sense to me that as our bodies need T3 for just about everything, that T3 will help with bone deposits.

Just make sure that you're getting enough Magnesium, Boron & Vit' D and if you're able do some weight bearing exercise.....

Yes, the endo did say that it makes osteoporosis worse but told him I was prepared to take the risk.

Unfortunately, I cannot exercise at all because of problems with rheumatoid arthritis which after being well controlled for over 17 years with the use of a biologic drug is now very badly controlled. Pain is excruciting at times. I used to go walking, go to the gym, do some hard gardening, not anymore. Can hardly function. I don't take Magnesium nor Boron but take VitD3.

Marz
Marz
in reply to JGBH

Dr Sarah Myhill has a great website and her take on bones is worth a read ...

drmyhill.co.uk

Yes, I sympathise re' not being able to exercise - I do very little now either.

SO sorry to hear about your pain.

Magnesium may well help with your pain - it relaxes the body. I have some Magnesium spray (often called Magnesium Oil online as it feels a little greasy) - this I find excellent for topical pain relief: neck, knees, feet, back...

There are studies that show that Time Release Niacinamide is good for joint pain, probably through increasing blood flow.

I take Lamberts Glucosamine Complete - I find that this really helps with my knees.

I also avoid wheat & sugar - cake is very bad for my knees!

The body really does need the Magnesium and Boron to help with bones.

Remember to take any minerals, i.e. Magnesium etc. away from Thyroid hormones.

Thanks for the tips. I think I will go back to just 5 mcg twice a day as I didn’t get any palpitations with that dose.

Just thought it would be ok to up dose.... obviously not yet.

The dreadful cold isn’t helping either!

Drink plenty of freshly squeezed lemon juice in hot water and eat oranges and satsumas for vitamin C. Use something similar to Olbas oil.

Merry Christmas to you too.

I'm sure it will be OK to up the dose in a while :-)

Glad to hear that 2 x 5mcg T3 was OK - that's bound to make you feel better, and a very good sign....

Wishing you well...

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