25mcg T3 split 20 am & 5 pm - I have tried splitting but have found I need more in the morning, I seem to be ok during the day, I take a little top up in the evening.
No vits this time but have been working on ferritin and vit D since last time, am also trialling self injecting B12 for my neuro symptoms to see if that helps.
My recent Endo appt I fudged the results, didn’t take Levo for 2 days and T3 for 1 day, so all showed up in range except TSH T4 was 2% in range, T3 64%
I don’t feel over medicated, no palpitations, anxiety, shaking, over heating...
I am sleeping better
I still have ringing in my ears, boat like sensation in my head, like a prickly skin sensation in my arms (mainly in the morning)
I asked my Endo if I could increase my Levo slightly and tweak my T3 but she told me to drop my Levo to 50mcg - she thinks I’m on 20mcg of T3 (I have some of my own which I added in as I had symptoms)
I feel scared to drop my Levo lower incase it makes me ill - I also don’t understand why I don’t feel over medicated with my T3 so over range?
Thanks
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jamjar67
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These were the 3 suggestions I put in my letter to the Endo:-
1 – increase my T4 slightly to 100/75 alternate days – If I do this I may or may not need to reduce my T3 – I feel by tracking my signs and symptoms I would be able to control this –
My concern re this option – previously as I gradually increased T4 I began to feel worse due to poor conversion (due to polymorphisms of my DIO1 & DIO2 enzymes) therefore this could just result in my body converting the T4 into more RT3 – also looking back at my TSH in 2017 prior to my diagnosis – when I now know I had classic Hypothyroid symptoms, my TSH wasn’t high 3.9 and T4 – 11.7. One year later when I was diagnosed and very poorly, my symptoms were horrendous and my TSH was still only 7.2 & T4 – 10.3 so now I am wondering if maybe I have a maladjusted pituitary?
2 – Stay on 75 Levo but add in a midday dose of T3 (10mcg) which could help with my midday slump – obviously I could add this in gradually (i.e. starting at only an extra 5 mcg T3) whilst monitoring my signs and symptoms to ensure I don’t over medicate.
10 @ 5am, 5/10@ 12pm, 10@ 5pm
3 – Decrease Levo to 50mcg – take T3 – 15@ 5am, 10@ 12pm, 5 or 10@ 5pm
I do think at this stage I should try option 1 first ( and tbh with the cost of T3 to the NHS I did think this would be the option she would go with!! If it doesn't work I have at least ruled it out. I don't think my GP will overrule the Endo at this stage so my only option is to write to her again and ask.
Her suggestion of Option 3 without offering more T3 if needed is a worry.
She has however left me on 75mcg of Levo (she said do what you want!!) so I could drop to 50mcg per day, see how I go, and if I start to feel worse just up it again - tell her what happened and take it from there...
Just to update I wrote to my Endo who agreed to up my levo to 100mcg, however I wanted to raise it slowly due to feeling so rubbish previously, therefore since 12/4 I have been taking 100/75 (an increase of 25mcg) I feel rubbish!!
I have dropped my T3 by 1/4 but the extra levo has disrupted my cortisol and I am waking again in the night, sweats, all my prickly skin sensation in my arms is back (which I think is linked to cortisol) and feeling drained around my eyes.
I wondered if I should write back to him and suggest I go back down to 75mcg.... I'm now wondering if the other Endo was right to suggest I go to 50mcg which I would try if they would increase my T3 (which I doubt they would do)
I just feel the levo doesnt agree with me 🤷♀️
Any thoughts, feeling a bit deflated with it all...
Ugh, persuading endos! I am anxious about it and have 2.5 weeks before I need to persuade an endo myself! And I don’t know if I have a very suppressed TSH yet.
It is the consensus document on future research into T4/T3 combination therapy.
The consensus document may suggest two useful things with the endo:
1. Research on rodents suggests it is about how much thyroid hormone makes it into the tissue - topic 1 - and bloods are not an accurate reflection of how we are doing at a cellular level
2. We don’t know if taking T3 in its current fast-release form causes suppressed TSH, given the T3 spikes it creates which wouldn’t exist in a “normal” person to the same extent. They are hoping to see if a slow release preparation has a different impact in the future.
So, for my appointment I am planning on saying that I’d rather take risks which the endo might associate with a suppressed TSH and feel well. I am planning on saying that if we don’t know whether fast-release T3 causes a very suppressed TSH, then we can’t say with any certainty that a suppressed TSH on T3 indicates over-medication. The direction for future research in topic 1 suggests that what is in the body at tissue, rather than blood level is important. I will argue that there are also risks in being under medicated. Then I am planning on mentioning “patient centred care”, which is at the heart of NHS philosophy and means we have a right to a say in our treatment and medication plan... ! And then I shall hold out my bowl and say “please doctor, can I have some more!”
I am also going to say that, like anyone, I have no interest in making myself unwell with medication, and intend to use fingerprick tests at 8 week intervals for my own satisfaction and will contact him if I find anything awry / need help.
I have no idea how that will go with an NHS endo, mind, but hopefully it gives you some ideas for yours!
Thank you for this - I did write a letter, with my suggestions on my treatment plan going forward and a couple of research studies as to why treating me by TSH is wrong. Unfortunately she didn't read it even though I sent it a good week prior to my appt. She basically told me she has far more complex patients than me, which I'm sure she does, hence why I am trying to make it easy and do her work for her so she basically only has to sign my prescription and send me on my way!! She did also mention the cost of T3.
I did however manage to get a dexa bone scan and she also wanted me to have a vit D test when I told her I was taking 5000iu D3 per day. I might write to her again once I have done these tests and ask again to first try the slight increase in Levo and adjusting my T3 as necessary before her suggestion of dropping my Levo anymore just to see how that works.
I just feel dropping Levo with no extra T3 could make me feel worse.
Fingers crossed for both of us - please let me know how you get on with yours - Good Luck!!!
Yes this has just happened to me my endocrinologist reduced T4 by 25mcg a day to bring T4 &T3 down slightly and my T4 dropped from 23 to 17 and T3 from 6.4 to 4.6 and feeling terrible, so patiently have to start trying to get my levels up . Trust your gut .
Yes I’m only takin 06.25 as that normally keeps me at the top of the range , I’m clearly converting some T4 to T3 when I’m on 100mcg , my vitamins are all good now so that clearly helps , but since reducing that has taken me back to where I was before starting T3 . Very angry that I agreed to reduce , but my T4 was 100% through the range and T3 96% through the range , now both on their backside again 🤷🏼♀️
Thats the thing, one wrong move and it takes so long to get back on track.... its taken me 2 years to get to where I am and I just don't want to go backwards - thank you for giving me the benefit of your experience, I really hope you are listened to and supported in getting back to where you need to be 🤞
Thank you , really trust how you feel and If you feel ok I would definitely not mess about with doses it just shows how important T4 is , my T4 has always been constant on 100 and having tried different T3 doses ( highest 18.75 ) I now know keeping my T4 high with a small amount if T3 is best for me . my endocrinologist quickly put my dose back up up but feeling rubbish for the next few weeks or months till I get my levels back up there is not recommended 😫
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