I've been on different types of levo since May last year I'm lactose intolerant my endo prescribed me T3 liothyronine starter dose 20 micrograms split dose 10..10..i asked if the liothyronine contained lactose I was told no it does not, I been taking them for over a week and I have all the symptoms of loose bowels, pain, cramp ect. I've looked at the leaflet they contain lactose.. 😩 I have spoken to a lady at my practice she doesn't think I can get T3 that is lactose free is this right... 🙄 Any help with this would be appreciated I'm so ill with this also the gp who saw me the one that got my endo to prescribed T3 noted I was showing hyper symptoms.. I do have hyper symptoms I've had them all the time even when my thyroid was removed.. I did read that anti bodies can remain in the system for over 15 months after thyroidectomy for hyperthyroidism my endo said my anti bodies were very high could I still have the anti bodies in my system??
Many thanks
Karen♥️
Written by
birkie
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In my list of liothyronine products, I have identifed some products which definitely DO contain lactose. Please check the others which could be relevant. I have not got definitive answers for all of them.
UK Liothyronine Tablets
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Last updated 30/04/2020.
This is a list of currently marketed liothyronine tablets in the UK.
This document is updated whenever I am aware of any changes or enhancements are needed. Please check the Last updated date. The current version is available as a PDF here:
Thanks for that info it's much appreciated ♥️ at the moment she is trying to see if my pharmacy can get lactose free T3.. So I'm waiting on her calling me back.. I'm crossing everything I get it.. I also have an appointment with the endo next month I hope they don't cancel this one 🤞
My leflet says... The active substance is liothyronine sodium. Each table contains either 5microgram or 10 microgram or 20..the other excipients are.... Lactose monohydrate, partially pregelatinized maize starch, spray dried acacia, sodium chloride and magnesium stearate..??
That sounds like Morningside who are the only ones that produce 5 and 10 microgram tablets. And yes, as in my list and your list of ingredients, they DO contain lactose.
Teva is the ONLY UK liothyonine that is lactose-free.
It's my understanding that with Graves, which I presume is what you were diagnosed with, the TSH seen in isolation is an unreliable marker of anything, and seeing as you are now having T3 ( well done ) T3 is what needs to be measured and monitored.
The TSI /TRab antibodies are still in our blood, as when initially ' triggered ' they latched onto our TSH receptors and drove down the TSH, causing us to go hyper. They haven't gone away, all that's gone away is the engine, your thyroid, that they were firing up unnecessarily.
So now you don't have a thyroid, and the feedback broken, so the TSH is a totally unreliable test and shouldn't be used for thyroid hormone dosing or monitoring.
So yes, the antibodies can still be present, and I wouldn't even put a time limit of this, it's something unique to Graves patients and that should be known and taken into account when having blood tests.
Yes I had graves.. My T3 shot to 38.9..then went higher when I was in thyroid storm.. I'm last TSH was.. 1.6..that was 6,7 weeks ago I've had bloods done since on Wed 6th of May but no results yet.. I've asked for them tho... ❤️❤️
Just remember T3 will reduce down your TSH to a low / suppressed level - and that is a given, it just does.
My TSH was at 0.01 to start with whilst on T4 and in an ever decreasing circle of dosage, before I even self medicated - now on NDT it's stayed at the bottom, but I've got my health back.
I've just received my thyroid results my last TSH 6/7 weeks ago was 1.6 just recived my results today my TSH is now 10.69..this was 6 weeks on liquid levo T4.... 🙄🙄
Well, this surely proves without any doubt, that T4 doesn't work for you in any shape or form - it just seems criminal that it's taken so long for this realisation.
My TSH went up into the teens when undermedicated on Levothyroxine :
Lets hope the Teva lactose free sorts you out, and your records adjusted to named brand only.
Yes vitamins and minerals need to be optimal as T3 is. I understand, powerful, and one's body needs to be able to adjust ' gear ' to accommodate some thyroid hormone replacement.
For ferritin check out Asda frozen chicken livers - they are very clean and just need to be flash fried and then I whizz down into a soft pate with a dollop of mayo. I take a spoonful every morning to keep my ferritin optimal, and now on a maintenance dose I use only 1 tub weekly.
Many thanks for the reply I'm having pate when I feel like eating and orange juice also red meat but to be honest the last few months I've not had a good appetite because I feel very sickly. My TSH.. Has been up and down since my thyroidectomy I've never felt any better and always felt hyper.. Not cold. No constipation the symptoms I had due to hyperthyroidism have remained sweating.,tremors in hands and legs poor sleep sheer exhaustion not fatigue I have chronic fatigue and ME.. Also colitis ibs, osteoporosis and athuritis in back and knees and ankles😩 and now graves... I had to have my thyroid removed due to it being toxic it nearly killed me😩 but when I asked if all these symptoms would go after my operation my endo and surgeon said yes of course they will.. Nothing was mentioned about having graves for life or having anti bodies in your system I've not had an anti body test since Jan 2019 before my op they were high and I was put on iodine liquid 7 weeks before my operation... Today I feel very light headed totally exhausted feel like a train is running underneath me I've got body shakes in bed again this is no life... On the plus side my surgery has obtained T3 lactose free 😁 I'm getting them tomorrow hopefully so their might be a light at the end of a long dark tunnel.... 🤞🤞🤞🤞
Well there's some good news from the surgery - at last !
I know you are having to deal with so much and I admire your tenacity and really hope the lactose free T3 from Teva you'll start your climb back to better health.
I spent over a year building up my vitamins and minerals before I started to self medicate, first with T3/T4 combo and now in my second year having chosen to stay on NDT.
From my reading on here, having learnt of my situation back to front, it does seem that the level of antibodies should be tracked and not just run the once at initial diagnosis. I think I have been given to understand that it's pointless treating Graves patients with RAI ablation or a thyroidectomy when these antibodies are raging and out of control.
Personally I would have preferred to stay on a low dose of AT medication. I was well on the Carbimazole and think, for some people the drastic action of thyroid removal or burning the thyroid out in situ, let alone not be told what this RAI ablation might do the rest of your body, is total overkill.
I can tell you having my thyroid was hell that's because it took over 3 years for my surgery to diagnose me it was so toxic I couldn't respond to the anti thyroid meds I kept vomiting them back so in effect they didn't work also I was given them before my uptake scan which I had to ask for upshot was my body had very high antibodies after the scan I went in to thyroid storm so my endo wanted the thyroid removed quickly so that's what happened 😔 I really had no choice I was so ill with it.. Now I'm ill without it too... We can't win... Hope your doing OK on NDT.. Yes your correct I have beaten my GPS and endos down but I will admit its because of the great advice I have received on here... ❤️❤️❤️❤️❤️
Yes, I totally agree - it's because of Thyroid uk and this amazing website that I've managed to turn things around for myself, and claim back my health.
I feel totally indebted and try and give back and help others who maybe going through similar circumstances and need a bit of support when the conventional methods fail and one feels disappointment in the medical profession, we grew up trusting and believing that they were there to help you get better.
Good luck, keep us posted, it can be a slow build, remember the tortoise and hare.
Just had the doctor call me back he says their is no such thing as lactose T3... 🙄🙄 I've just quoted him the teva brand T3 he says teva is T4 only.. Really.... I asked for my blood results.. My TSH.... 10.69...my T4.. 9.8..my T3 3.2....this blood test was when I was on liquid levothyroxin for 6 weeks... Can you help me work these out... My TSH is high... 🤔🤔
Sorry I could not reply back yesterday I was shattered firstly I was on 2,, 5ml spoon fulls per day.. I reckon the reason my TSH is high is because I had very loose bowels the liquid was worse than the tablets you could taste the sugar in the liquid it was extremely sugary.. My results on this liquid are as follows..
TSH.. 10.69...range..0.3-4.5..mu/L
T3..3.2...range3.10-6.80..pmol/L
T4..9.8..range..11.00-22.00pmol/L
Im pleased to tell you the lady at my surgery managed to obtain teva T3 lactose free☺️ when the gp refused to even acknowledge it existed 🙄 I'm very sure that this site and its great people on it helped me because I would probably have taken the GPS word that you can't get T3 lactose free... I challenged him on this about four times even stating the name teva... He had no recourse and had to help me by asking that lovely lady to source it. To be honest the way I have been treated by this surgery they should be falling over themselves to help me..
I've been told I'm receiving 20mg one to be taken daily... Yes I have a blood test in 5wks time so that will be 7 weeks on T3 only hopefully the lactose free ones will absorbe better.. As you say I need a full 6 weeks on T3 then see what my bloods look like then if I need a dose adjustment I can do the 5mg to make 25mg..
I have lactose free milk I don't eat cheese or dairy products my diet is very bland but I'm wondering if its the sugars in lactose the liquid levo was so sugary I wreched when taking it.. I can remember having a product to get you moved when I had my hysterectomy it was called lactolose.... I was very ill on it so the hospital took me off it... 🤔 No not taking levo...
Just to clarify about the B12, vit D I've been using the vit D spray but gp says all my bloods are normal.. I've added red meat and pate and orange juice to my diet but to be quite honest the lactose makes me feel sick my appitite as diminished these past 3 months I really don't want to eat.. I'm drinking tho... ❤️
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