Levothyroxine only or mixed therapy T4/T3; my experience...

My opinion is based on my own personal experience and I have no medical training at a level above VTCT level 3 sciences. But I do know my own body well and I have read everything thyroid related constantly since diagnosis in early 2012.

When first diagnosed hypo and treated I responded well to T4 and it made a huge difference to how ill I had been, however there were still lingering problems... some muscle aches, restless legs, weight gain.

In January 2014 I tried a little more T4, going below TSH of 1 (0.2) and still had the muscle aches, restless leg, weight gain problems and now with the addition of diarrhoea and constant headaches and insomnia. I got a ticking off from my GP and I had to agree that the experiment with more T4 had not been successful. I went back to my prescribed T4 dose and the headaches/diarrhoea/insomnia went, my TSH level rose to 1.91, but I still had some muscle aches, restless legs, weight gain.

I did a lot of research into T3 and so many times read about people who had depression which was ONLY resolved with the addition of T3. I didn't have depression but I did have other issues which seemed unresolvable on T4 only even when I upped the T4 dose.

After four weeks back on my regular dose of T4 I added a 6mcg dose of T3 in the morning and another 6mcg T3 dose in the evening. I began this in April and it worked almost immediately. I have not had a return of the diarrhoea/headaches/insomnia and have also lost the muscle aches, stopped the awful night-time restless legs, stabilised my weight and I've even lost a few pounds. I have had NO symptoms or signs of going hyper or having too much thyroxine.

For the first few days about two hours after I had taken my T3, I had a faster resting pulse rate (RHR: 80-86 beats per minute) for an hour or so, then it settled back to around 62bpm. My usual RHR is around 62bpm. This morning, nearly two hours after my T4/T3 morning dose, my RHR is 63 and for a long time, taking the T3 has not caused my pulse rate to rise in the few hours after taking it.

I'm settled on my new regime (four months now) and would never willingly go back to T4 only. I can't give you a current TSH as I've not been summoned yet for another test and I'd rather not 'fess up for the time being . I'll face that battle when I'm next summoned - hopefully not until early2015... I don't think my decision to self-medicate and add T3 will go down too well and if I can avoid owning up to it I will. It puzzles me why T3 has such a public bad press - many doctors privately acknowledge that T3 is actually very helpful for many. I suppose within the budgets of the NHS, the convenient little TSH test is no longer as useful once T3 medication has been added into the mix... although I have learnt in the past few years that actually the TSH test was never so great anyway.

My conclusion; whilst I was converting T4 well, it seems that T3 reaches the parts T4 cannot or that T4 cannot sustain consistently. I don't know why, it just does.

Will I go back to T4 only? Not if I can help it!

[TupennyRush]

Hi - where do you get your T3? Message me if we're not supposed to advertise websites on here!

Thanks

[Hidden in reply to TupennyRush]

No - we're not to advertise! I'll message you when I can find the link...

[Hidden in reply to TupennyRush]

Have found it... This is not a recommendation to you to take T3 - everyone is different and it's important to do your research and find the treatment which suits you best. (I know you know that - just saying!)

I'd much prefer it if therapy were by negotiation between GP/myself... but needs must

[Chicken12]

I have had great results with T3 also after being on Thyroxine only. I started back on thyroxine Feb after being off it about 18 months and in April T3 introduced. The effects were immediate with me also. Instantly more energy and feeling normal after so long being ill. I have even had some weight loss.

I have been surprised by my GPs reaction. He has told me that this medication is hugely expensive and he would be telephoning the consultant to point out to her the financial implications to the practice in prescribing this medication. So much for becoming a doctor to heal the sick!

[Hidden in reply to Chicken12]

Diagnosis and treatment by cost is very short sighted.

I was very concerned about my hypothyroid induced high cholesterol, high blood pressure, weight gain (now far above the recommended levels and fast approaching obese). No GP or endo can tell me that those don't have long term financial implications, not to mention the cost to the DHSS when I become unable to work! We know this - why do some GPs find this so hard to figure out?!

[lizzy1234]

Oooh... Just about to start my own journey into adding T3 and I know my Dr at the current (MOD) practice will be aghast. I have followed a link on a diff thread for the mexican phramacy online. Do you take cytomel?

[Hidden in reply to lizzy1234]

I take cynomel and I was very cautious. I did a load of research first. Good luck.

[lizzy1234 in reply to Hidden]

Thank you. Yes I feel like the past 6 months of research has led me to this point. 26yrs on Levo which has been ok but this past 9 months has been pretty awful and the Endo was v anti anything else except iron because Levo is enough apparently. I'm less convinced hence the blood test tomorrow . It's terrifying going down this route without medical support tbh but I crave better health. I am very cautious.... too much to lose to not be. But I have reached a point of too much to lose to never try.

[Hidden in reply to lizzy1234]

I'm so sorry you have this experience.

I'm also angry that we are given this bitter choice - go it alone facing the wrath of the 'experts' or continue to suffer without having the opportunity to at least try other treatments.

I really wish you well. xx

[lizzy1234 in reply to Hidden]

Thank you! The relief in many ways is knowing it is a fast acting response so there's no need to plough for a month or more waiting for improvement but risking side effects. I will let you know! Best wishes to you too; thanks for sharing x

[Hidden in reply to lizzy1234]

It looks as if it's been renamed as cytomel - my bottle says cynomel - my order was so long ago - I take such a small dose and split the tablets.

I'll be interested in how you get on so will look forward to reading an update. x

[Shahrzad]

LizaSahara thank you for sharing your experience very helpful to me to read about your experiences. I hope you stay well and enjoy life without those dreadful symptoms

[Hidden in reply to Shahrzad]

Thank you Shahrzad. Wishing you wellness too.

[Hidden]

You and me both Liza....every rise in T4 just made the joint pain worse!

Thank goodness for my Endo prescribing the T3 that DOES reach the cells that control our metabolism as is supposed to.Armour Thyroid will be a natural way to do that too which may be my next step.I don't think I'm likely to get T3 raised by my GP who made it's price known immediately and so I have trialled Armour and my Endo is happy to monitor me on it though I will have to buy it myself. ......cheaper than T3.

Good to hear that you are well .....long may it continue X

[Hidden in reply to Hidden]

Hi Marfit! Lovely to hear from you again I wouldn't even get to see an endo or have any discussion of treatment other than T4 - my TSH levels were so perfect on the prescribed dose... such a shame my GP couldn't tell my muscles that everything was perfect too! Hense the decision to go it alone. I hope you're well now - or at least making progress. xx

[Hidden]

I know what you mean Liza.I had to tell my GP that I was living in my body and not on the computer screen!........ Looking back I don't know how I managed to say that,but it seemed like my symptoms didn't count......just the computer print outs.Apparently my joint pain was nothing to do with my thyroid...we had to look for something else.......so I had a full blood count and hey presto everything came back normal so I wasn't called back.

Of course what we were obviously looking for was non conversion of T4 to T3 but only my Endo knew that.........all water under the bridge now thank goodness and yes I am making good progress too.xx