I finally had an appointment with an Endocrinologist at my local hospital today. I took my husband along with me to listen and support me during my consultation.
I had a set of blood tests before my appointment at the request of the hospital. The Endo was a friendly, warm specialist and listened to what I had to say regarding my on going symptoms despite being on 150mcg daily of levothyroxine since November 2015 and as she said "I was in normal range of test results". I do not have a copy of the results from the hospital. She did look through my blood test results since being diagnosed in 2012.
I was quiet shocked that she has agreed to trial me on Liothronine sodium 20mcg. The dose is to be half a tablet taken three times a day. I was also told to stop taking my levothyroxine daily whilst take Liothronine.
My question is do I let the levothyroxine leave my system before starting on Liothronine? If so how long should this be? My new meds collected from the hospital pharmacy didn't come with any instructions or patients guide notes/information sheet. I would appreciate any advice and help. I am not expecting this to be quick fix and hopefully over a few weeks will start to feel more like the old me and not so fatigued all the time.
I have a follow up appointment in two months with the Endo with a blood test before.
Thank you so much again for all your advice. I really do appreciate your help.
Written by
reschy
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You can start taking liothyronine from tomorrow. I note you were on 150mcg of T4 daily and assuming you are going to stop it completely whilst trying T3 at 20mcg daily? 20mcg of T3 is around 60mcg of levothyroxine so I would have thought a dose of T3 i.e. 40mcg daily at least would have been of more benefit. To give too low a dose of T3 (equivalent of T4) might backfire if you're underdosed.
It would be difficult to split a 20 mcg tablet into three. I would take 1/2 twice a day, although I take T3 only and take it once a day.
Thank you Shaws for your reply. I am a little nervous about stating the T3 treatment. My dose is half a T3 tablet 10mcg three times a day. (tablets I have been given are 20mcg, the hospital pharmacy also gave me a tablet splitter). I am worried that I will be slightly under medicated as the Endo told me to stop taking my Levothyroxine. I will see how I go and hopefully will see some improvements fingers crossed.
Take it from me - there's no need to be nervous at all. I hope you feel much better soon but if you're dose is too low you might have to increase it. I shall give you a link and the doctor who wrote it took 150mcg of T3 daily.
Thank you Shaws. I think the nerves come from the expert that advised me about medication. I have tried splitting the T3 dose, not easy I will need a little more practise. I am so determined to get better and go about my normal day without having to stop what I am doing and go to bed and sleep. I lose so much of the day to fatigue. I am so greatful for any information that is given by all you lovely people.
A scalpel is better for splitting tablets than a pill cutter in my experience. Do a search for scalpels on Amazon. You'll be surprised how many there are to choose from and how cheap they are.
Most of the time when using pill cutters I've just managed to crush the tablets because the blade is too thick/too blunt. Also they don't allow precise cuts - I've wanted 1/2 tablets and ended up with 1/3 and 2/3, which is annoying.
Thankfully some Endos are prescribing. My NHS first added 10mcg T3 but as they're not 'expert' at prescribing it is them who tend to be more nervous.
Shortly after I began I was phoned after my next blood test and told me to stop T3 (they go by TSH only as you are aware) I refused because I had an immediate good response so they reduced levo instead but I didn't care as long as I had T3, but I knew the combined was too low for me. So I progressed on my own.
Sufficient T3 is required in all of our receptor cells in order for us to feel well and normal health. It calmed all of my system and caused no palpitations or adverse reactions as levo did.
I took my first dose of T3 only this morning. The Endo did say that there was no scientific evidence that if T3 was prescribed to a patient they may see any difference in the way they felt.
I am so determined to give this treatment a go and hope that it will work for me. However, as I am only on T3 for a few months, I am expecting that maybe I will need to introduce a little levothyroxine. This I am sure will be another point I will have to raise with the Endo when I see her in two months. If I do feel well on T3 I will fight my corner to keep on the meds.
My hospital blood test that is due before my next Endo appointment is for TF1 and TFT.
I should also say that when I had my Endo appointment I told her that my last blood test done by my GP included T3 and TSH and both had an asterisk next to them.
I am sure that because of all you lovely knowledgeablepeople that have guided me through this journey as to the best way to approach my treatment and the avenues that you have to go down has been so beneficial to me, and has got where I am today. Thank you all so very much.
You will have the residue of T4 in your system for some weeks which will gradually diminish and you'll be on T3 only then.
You might feel the benefit of T3 today as T4 will still be in your system. If after 3 or 4 weeks you are developing systems you'll have to get a blood test from GP and phone her for an increase. 8 weeks is too long to wait when first beginning a new regime.
I forgot to mention that if you are splitting your doses, food can interfere with the uptake of T3, so if you've eaten two hours minimum would have to be allowed before taking it and wait for 1 hour afterwards.
Thank you. Did just that this morning with my first dose. Will do the same throughout the day.
I have decided to keep a log/diary of my journey whilst trialling T3 meds. This I hope will be a useful tool when returning to the Endo in a few months time, showing my experience of how I am doing or not on the T3 meds alone.
I think it will be much better to see what it is like on T4 and T3, but you would use much less T3 to start with. If the endo has given you the ingredients i would spend time working out my own dosing.
Firstly if i was using T3 i would always start with a baby dose of 5mcg, so split the tablet into 1/4's - use a Stanley knife.
I would see how 5mcg worked in the morning on the first day and i would probably drop down to 100 T4. I would then keep the T4 at 100 and adjust the T3 over the next week to see if i can find some better balance.
The thing is it can take a while to find that optimum balance, but what you want to try and look for are moments in the day when you do have more energy and less of the bad symptoms. Hopefully you will experience this.
I would also try using 4 x doses of the T3 per day. So after a few days you may be on 4 x 5mcg T3 plus the 100 T4.
Thank you Marsaday. I will start slowly for the first week on T3 as suggested. I know I don't last much after lunchtime (afternoons are bad for me) before the fatigue kicks in and I need to go to bed to sleep for 2/3 hours.
My Endo told me to stop taking my levothyroxine and just take the Liothronine. As you said trial and error and I am prepared to take my time to find the right combo for me. I just want me back that fun, full of energy girl.
Thank you for your advice Marsaday. I would be soooo lost without all you lovely people with lots of knowledge and experience that you share.
Reschy, ask the endo's secretary to email the results with ranges to you. 30mcg T3 is equivalent to 90mcg Levothyroxine which appears to be a significant dose reduction. You can switch straight over to T3. T3 should be taken away from food and drink etc. as per Levothyroxine.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thank you clutter. I am going to contact the Endo's secretary tomorrow for a print out of results and to be copied in on the letter the Endo will write to my GP informing her of today's consultation.
Well, the levo obviously isn't working, and the most likely explanation is that you aren't converting your T4 to T3 (or converting to RT3 which is bad too). So I wouldn't be too worried if you are switching to something that does.
Thank you Ruthi for your reply. Today is day one on T3. The GP did a T3 blood test that flagged an asterisk against TSH & T3. That prompted another increase in Levo and an Endo consultation request, along with the fact That I had been back to the GP roughly six/seven times last year complaining of still feeling unwell. The Hospital did bloods too before my consultation. I am contacting them today to ask for a copy of my results. I am not giving up and I know it's going to take time to get the right dose and combination that will be best for me.
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