Hello all,
I had my appointment with endocrinology, he said he will give liquid levothyroxine for a while, when I next see him. He did not seem at all interested when I mentioned T3 to him, even though I have been struggling on levothyroxine tablets only for the last 16 months. I wanted to ask you all how you get hold of T3 to self medicate. Do you have to get a prescription from a private doctor?
DandyButch
I wanted to ask you all how you get hold of T3 to self medicate. Do you have to get a prescription from a private doctor?
If you had a prescription from a private doctor you wouldn't be self medicating, you would be a private patient being treated by the doctor. It would involve consultation fees, and the cost of the private prescription and your T3.
There is a lot to get sorted before considering T3:
Finding out if you are a poor converter which involves taking enough Levo to bring your TSH down to 1 or below to give the highest possible FT4 and then looking at FT3.
You also need optimal nutrient levels - Vit D, B12, Folate and Ferritin.
At the moment your endo has said he will trial you on liquid Levo so it would be best to go with that first to see if you get on better with that than you do with tablets. If you don't then you have a case to push for a trial of T3 on the NHS.
Thankyou for your reply. I have been really struggling to get through each day. My mental health is affected too. I have been on the tablets for 16 months without any effect other than the blood results of TSH lowering to within normal limits, but symptoms still there of hypo. I need my life back.
At the time, my GP was able to test my FT3 (as well as TSH and FT4) and it was consistently low. Key vitamins and minerals were fine.
I mentioned it to the endocrinologist who put me on a trial of liothyronine. (It took a year before the GP agreed to take on the prescription so I ended up self-medicating, and I see the endo twice a year just to be monitored.)
Hello Babette,
My gp only tested TSH. I have stopped taking the tablet form of levothyroxine due to it making me feel worse accumulatively. Before I was put on it, I wasn't really aware of any symptoms of hypo. It came as a surprise to find out I was hypo with hashis.
Is there any chance that the liquid will be the solution? Because the endo said he would only try it for a while, and to then revert back to the tablets.
I've never tried the liquid so can't comment. Unfortunately there's no "one size fits all" so we have to find out what works for ourselves.
I know someone who has a problem with certain brands of levothyroxine but fine with others so that might be worth ruling out. All brands made me feel ill. I only found the cause after liothyronine added to the levothyroxine and I ended up being over-medicated so stopped the levothyroxine. I now take liothyronine only. It's not the solution for everyone though. I'm also careful about lifestyle (rest, stress, exercise, food, cleaning products ... I'm the crazy woman in the supermarket who checks all the labels😁). If I don't take care, I'll be wiped out. It took 18 months to even get a diagnosis (it was asthma, nasal drip, indigestion, a chest problem, poor diet), several years to get this far, and I know there are more things I'll discover.
I was lucky with timing and my GP was able to test my FT3 but I don't think that's the case anymore. If he asked for it now, the lab wouldn't carry it out. The endocrinologist should be able to do it so it might be worth asking.
I try to work with the endos and they've generally been quite receptive. I had the results of my blood tests so was able to ask whether my FT3 results looked low to them or whether they were normal. Of course I knew the answer but wanted to steer them into coming to the same conclusion. I tell them them what I'm doing, what's worked, what hasn't worked, any articles I've found, and ask their advice.
Where I would start:
- Establish whether it's just one brand of levothyroxine that you have problems with.
- Check vitamins and minerals. Things like B12, vitamin D, iron, etc. Your GP should be able to do that.
- Keep a diary of food, exercise, sleep, how you feel. You might see patterns. Be analytical about it. If something doesn't work, it's not a failure; you've ruled it out. It could also be a combination of things.
- Ask your endo for a FT3 test at your next appointment.
- Get all your blood test results and put them into a spreadsheet. You can start to see patterns.
- Be patient! We're all unique. What works for someone else might not work for you.
Good luck!
Thankyou for your reply. I have been on each of the different brands, and have not got on with any of them. I always end up with stomach problems and pain in my liver area. Since stopping, everything is back to normal. My cortisol is elevated, but endo says not cushing's disease, although he has asked for another blood test to check level. I had some vitamins checked but they were considered to be within normal limits. Some were quite low, so I have been supplementing in recent weeks. I have been keeping a diary of sorts. Thank you for your recommendations, and time.
It sounds as though you're doing the right thing by trying different things and I'm sure you'll get there.
Some people find cutting out gluten helps but if you suspect you might have a problem, would recommend being tested for celiac disease before stopping. I stopped then tried eating one meal containing it and was ill then felt hungover for 3 days (without even having a drink!). To go for a test, you need to have at least one meal a day containing gluten for 6 weeks and I couldn't face going through it. A friend recommended the blood group diet so, despite being skeptical, gave it a go. I found it quite a good starting point. But again, it might not work for you.
It can be very frustrating working through the options when we just want to feel well.
Hello again. How do they test for coeliac disease. Is it a blood test or something else?
Initially, they do a blood test. More info can be found on the Coeliac UK website here coeliac.org.uk/information-...
Hello 😊
I believe there's an antigen blood test but the most accurate way is for a biopsy of the bowel. It might be worth having a look at the symptoms too.
HiyaAs SeasideSusie says, you need your T4 & T3 tested before you know if you need T3. If you GP and Endo don’t do them then you can buy a private test for less than £30 (links are on this forum). Once you have all your results take them to your Endo.
They can advise on what next
Best wishes
Thankyou for your reply.
Unfortunately, because I lost my job because of not being able to work due to the dreadful symptoms, I do not have money free to spend, which is very frustrating when I know this is the best course of action. To be prepared and armed with facts that the NHS don't consider relevant.
But, I appreciate your advice and will try to see if I can sort it somehow.
I’m so sorry to hear that. We were in a similar position during Covid. Is so hard. I wish you all the best. Stay strong
I am trying so hard to be strong, but it is very hard when every day is such a struggle and affecting my mental health.Thank you for your message. I know from this forum that many, many people have been like this for a great deal longer than me, and I can barely imagine the hardships they have faced. It seems the only way is to help yourself. The NHS is more interested in cost cutting than giving people the medical help they need and deserve. But surely this is counter- productive when people cannot work due to ill health. They have their sums wrong.
Hi, I switched from levo tablets to liquid a year ago. I'd had 7 or 8 years of trying to convince doctors that I was hypo inspite of 125 levo and 60 daily lio. My T3 was consistently very slightly above range. Yet I had many hypo symptoms including no hair under arms, splits in eyebrows and some hair loss. I have felt much better since the change. I have reduced lio to 47.5 daily, which I feel supports my view that I was not absorbing levo as I should. I would not say that I am 100% but I am a lot better. I ve still got some long COVID symptoms inspite of having COVID over two years ago. It's impossible at the moment to say for sure what causes my symptoms. I would strongly recommend you try liquid levo before going to lio or NDT. It may be all you need.Good luck
Thankyou for your reply. As far as I know, I haven't had covid yet. However, things started to go downhill rapidly (the next day) after my covid booster jab in November last year.
It is a comfort to know someone else who has had problems with the tablets. I feel reassured that this can happen, and I am not "imagining" it, but since taking levo tablets, I have never felt better, only worse.
Are you still on the liquid?
Yes I feel so much better on it. My main problem has been after my second Pfizer jab. I ve had muscle aches in arms and shoulders ever since. They are better than they were but just won't go.
Hi, I had astrazeneca (is that right) for first two, then pfeizer for booster jab. Apart from a heavy sore arm for over a week with the first one and a simular milder reaction after the second, I didn't have any other issues until the pfeizer when I was dreadfully giddy, like vertigo, and felt so, so tired. Even walking to the bathroom, my heart was pounding. Whilst the vertigo waned very gradually, the fatigue etc has gotten much worse. So much so that I realised it probably wasn't all the vaccine. At least the gp said it wasn't the vaccine. Who knows. No one knows. All I do know is that as soon as I start taking the tablets again after a break, within a few days, I have gotten all the previous symptoms back and feel worse than without them.
Hello Woopy66
Thankyou for your message. Are you still taking levothyroxine? If so, how much, and how much T3 have you needed?
Thank you. I will be extremely interested to see how you fare. Best wishes for a better and healthier future.
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