I’ve recently requested a trial of liquid Levo from my private Endo as I wanted to rule it in or out in terms of trying to recover my health. I’m self funding for the trial.
I had intended to try branded liquid, but the pharmacy were unable to order at that point so agreed to try their compounded 100mcg per day in a 1ml dose.
I did baseline bloods prior on the 22/7
TSH 0.68 and both T3 and T4 50% through the range. I had taken tablets in the morning as my appointment for the blood draw was late afternoon. I know it’s not the protocol, but at least it gave me some indication of where they were at.
11 days into the liquid trial, I decided to get a venous Medichecks draw along with vitamins and iron. I did this following the protocol and ensured no biotin 2 weeks prior. My results were:
TSH 2.08
T3 3.28 (3.1-6.8)
T4 8.7 (12-22)
I was completely shocked by these as it appears that I’ve potentially not had any thyroid hormone from the compounded. I did everything as required- shook the bottle, nothing to eat or drink following for half an hour. I did split the dose, but have done this with my tablets previously.
Not sure what to make of it? I’ve gone back to tablets yesterday and will continue until I can source a branded liquid. I’m also on 15mcg T3 and have been since March.
I wondered what members with experience might suggest? Has anyone experienced this with compounded? I know it was only 11 days in, but I’d wanted to keep an eye as was worried I might go too high and had started to feel very unwell.
I’d planned on bloods at 2, 4, 6 and 8 weeks so I could see the journey. I know all things HPA take time to settle, but having been so unwell, I wanted to keep a close eye on what the liquid impact might have. This sudden drop was not what I expected! I’ve contacted the pharmacy and will speak with them next week. So disappointed.
My other Medichecks on the same draw as follows and sound like ‘me’:
CRP HS 1.64 0-5ng/ L
Ferritin 60.1 13-150 up from 40- the liver is working! Thanks for previous suggestions
Just to check one point. The levothyroxine oral solutions usually available in the UK base their dosing on 5 mL - approximately a teaspoonful. (And in other countries - except the single-dose product Tirotint Sol which is 1 mL.) But you say this compounded product is based on 1 mL. Could this be a mistake - somewhere?
I had a copy of their email to the Endo’s secretary and they said 1ml for 100mcg and 0.75 ml for 75mcg (I have 2 days at 75mcg) it really was a tiny bit of liquid, I thought the same. I’m going to check that the secretary did actually order correctly (Eg 100mcg not 10mcg) as the label was indecipherable when it arrived.
It is mixed with olive oil (listed as Almond oil incorrectly on the Thyroid Uk list of ingredients for this pharmacy’s compound. I checked with them in advance but they said olive.)
I noticed before shaking that there was a split in the product with settlement at the bottom. I gave it a good shake to mix.
So confused. Something has gone wrong. I’d been careful to wait post heatwave to do the bloods for posting etc
I’ll check with the pharmacist on Monday before speaking to the secretary. There’s every chance she may have made a mistake, but if it lies with the product, I need to let them know 👍
I can't comment on the compounded oral solution, but my own experience of the commercial oral solution wasnt good. My %s on 100mcg Aristo tablets and 12.5mcg cynomel were roughly low 50s in range. After a couple of months on 100mcg Zentiva oral solution and 12.5mcg cynomel, my %s had dropped to low 30s and I felt like sh! Nothing else had changed, times of dosage were the same and tests were done as per recommendations. 🤷♀️
So much for the oral solution being better absorbed and better tolerated, as that wasn't my experience. I now know that I'm extremely intolerant of / allergic to e219, which is the preservative in all non compounded oral solutions that I've looked up. But dunno what's going on with your compounded stuff.
Thank you so much for your reply- that’s very useful to know as I, too, was under the impression better absorption would be a given. I’m so sorry it’s not been the success you were hoping for. I think I need to be more realistic. I’d only read largely positive posts about things being better so my expectations were high.
Did you go back to tablets as a result? How are things now with your levels? It’s so hard all this trial and error, isn’t it? Such a long process and so many members here warn of it and to be patient. Trying
I’m not naive in things taking time. I’d experienced the long game with my daughter’s difficult to control epilepsy. She was drug resistant. One anticonvulsant 6-8 weeks to get on full dose, then the same to come off after a failed trial or terrible side effects. Eventually the ‘elixir’ was found that changed her life, thank goodness, but that took 6 long years for her. Fingers crossed we can find ours 🤞
Yes, it's soooo hard and I have very little patience! I'm so desperate to feel well, or even wellish, plus not get the sack that I have a tenancy to mess around with my dosage far too much. #ownworstenemy. I've now gone back to the tablets plus t3, which is a shame because initially on the oral solution I was much less bloated (hello late term pregnancy) and clearer headed. I'm not great on what I'm on at the moment, but I can function and that's so much better than what I have been able do in the recent past. I know that I need to get my ft3 level up, but that will come.
Have you considered Tirosint? The ingredients list is minimal, although I have no idea how easy it is, or is not, to get prescribed. It really is pants when you say that maybe you're setting your expectations too high, when all you want is to feel well. Hugs x
I’m feeling it for you, too! It’s the same here. I’ve been 10 months ‘patient’, well most of the time 🥴, since a huge crash and I, too, am hoping to avoid losing my beloved job. What this journey has taught me is that I’ve been so preoccupied (and stressed) with trying to get well for work, I’ve forgotten me in all that and that I need to reframe my thinking now. I need to get well for me, and my family. Surviving and not living, isn’t good enough. I hear you with the just wanting to be well, or even just wellish is where we get to, isn’t it? These could be my words The frustration being that we seem to have to accept mediocre, or that a base line of ‘functioning’ becomes the norm. I was functioning for the 2 years after diagnosis and intro of Levo, but I definitely wasn’t well. So many of us are living this.
Thank goodness for this forum and the stories of hope that are shared, along with the valuable insights. Thank you to you as well for your kindness I’m glad things are improving and I’ll keep hope you find your ideal set point 🤞
I’ve not thought about Tirosint! I’ll have a Google now.
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