Started T3 only! I believe thyroxine was poisoning me..

[Tiredtash]

I am 41 and was diagnosed as hypo 17 years ago. Medicated with thyroxine and was alway informed bloods were okay but have, for at least 12years, had hypo symptoms; 4 stone weight gain which won’t shift even though I eat healthy and exercise, swelling, puffy face, hands, feet and eyes. Last year my hair has been falling out and I’ve been experiencing aches and pains and depression/low mood.

Started adding T3 to the T4 about two years ago (25mh tiromel) but only a little difference mainly lifted my brain fog. However, I stopped the T4 completely two weeks ago as believe this is have a negative effect on me. My brain fog was becoming worse that I was mentally slowing and not finding my words and awful hair loss. Just taking T3 (25mg am, 25mg pm). Have upped my vitamins, vit D, Selenium, vit B complex, vit C etc.

I feel a bit better as my aches have stopped and my mental slowing feels a tiny bit better. What do you think? Am I on the right track? Will I lose some of the weight and my hair stop falling out? My GP doesn’t want to know as my last bloods are okay!

[Marz]

Some of your symptoms sound to be B12 related - do you have a result with range from before you started a B complex ? If you have a problem then the amount of B12 in a B complex will not be sufficient.

Your recent thyroid results with ranges would give members some ideas as to how they can suggest things to help

[Tiredtash in reply to Marz]

Hi Marz

I did have my iron and b12 tested about six months ago and was told by my GP both were ‘okay’! New to this site and now know I should have asked for the exact numbers. My last bloods showed I was overactive and should lower the T4. A Few months before these bloods I was on 175mg but increased this to 250mg without my GP’s approval prior to these bloods being taken because I thought the hypo symptoms were becoming significant so thought an increase would help 🙄 Maybe that’s why my results were showing the T4 was too high. Looking at this site I now wonder if my T4 was not converting.

I just want my life back.. I have spent more than ten years feeling cr.. but the symptoms both physically and mental have been awful and debilitating over the last couple of years x

[Marz in reply to Tiredtash]

You can still ask for the exact numbers - why NOT ? Results are legally. YOURS !

If you have been following this forum then you will know that an increase is 25mcg at a time.

And your FT3 is ??

[Lulu2red]

Your story very similar to mine, symptoms etc. I have dropped 125 mg of Levothyroxine and taking 15 mg of T3 am & 10 mg of T3 pm. Within 3 days the brain fog and aches & pains resolved & memory issues. Still have swollen legs and ankles but my dose may be too low. I will have to wait for my next hospital appointment to ask for an increase as NHS prescription. Been begging for T3 for 17 years because T4 does nothing to help. I am going to ask to have my B12 etc tested. I am waiting for gene testing results (paid privately) so I have proof I cannot convert T4 to T3. As for weight have put on 8 stone which doesn't shift no matter what diet or exercise I do. Maybe half a stone then standstill. No doctor or Endocrinologist has helped me

But found my Cardiologist is listening to me. I tried 5:2 for 2 years and lost almost a stone. But became seriously ill and caught pneumonia. I think my metabolism slowed to a standstill. In the end I could hardly swallow 500 calories a day, felt sick all the time. Now on T3 my Cardiologist want's me to give it another go for a couple of months so I am, plus trying to walk 10,000.00 steps a day. If the scales don't move then it's proof I am on the wrong dose, at least that is how I see it. I am using 'lose it' app to help keep a record of my calories and steps. It's a mountain to climb and all the more painful when you never had a weight issue all your life. I had the figure of a supermodel until after my second child at 29. Was borderline hypothyroid but never treated until 17 years ago with poisen T4. T4 lone therepy works for some people but doubt you will find many on this forum. I am now 59. Terrible waste of a life. People judge you but have no idea what your internal struggle is with this isidous hypothyroidism. I am only 4 weeks in on T3 only. My gut feeling is it will take a while to get into your cells that have been starving for it for almost a decade or more. One thing about hair loss, you can get that when you are hyperthyroid and hypothyroid, but also if your iron stores are low. All thyroid medication needs adequate iron to work well. Funny I was boderline anemic/ hypothyroid at 29. Wish the internet had been around then I might have cured myself by now. I am noticing improvements gradually, my digestion and constipation has improved. Onwards and upwards. I wish you well.

[Tiredtash in reply to Lulu2red]

Thank you Lulu2red.

I feel your pain. It is completely debilitating mentally and physically. I hope T3 only will be the answer. I have upped my vitamins and minerals, and eat an iron rich diet so hoping some weight will shift. Very frustrating when you eat healthy but can’t lose weight. I have tried extreme low cal diets but these have only shifted a bit of the weight however, they are not sustainable or healthy. Fingers crossed T3 will work for us x

[shaws in reply to Lulu2red]

T3 will work more quickly than you imagine. It has to saturate all of our millions of T3 receptor cells and then the work of that one dose will send out 'waves' for between one to three days. T3 is the only active thyroid hormones.

Before levothyroxine (T4 and inactive) was introduced we used to be given NDT which contained all of the hormones a healthy thyroid gland would have, i.e. T4, T3, T2, T1 and calcitonin.

stopthethyroidmadness.com/h...

[Andy85654 in reply to shaws]

I've read that ndt only contains trace amounts of T2 and T1. But maybe that's all we need? I don't know much about the quantities our bodies require?

I've also read that it's best to have a combination of both T4 and T3, not just T3 or just T4?

[shaws in reply to Andy85654]

We should try to mimic (I think) what mother nature provides and that used to be NDT since 1892 up until they withdrew it from being prescribed, forcing patients to buy their own.

It is what combination makes us well that is the No.1. NDT is more conducive to many because it is made from pigs' thyroid glands so maybe more helpful to the human body rather than a synthetic hormone.

I cannot take levo as it makes me very unwell with awful palpitations often going to A&E. I know how to avoid them now and haven't seen cardiologist since I switched to T3 only and neither have I had any palps and I feel well which is the wonderful bonus when we've struggled for a long time and doctors not endeavouring to do their very best and their famous phrase ...."but you are in normal range".

[shaws]

If you get a copy of your test results, with the ranges and post members will respond.

Is 50mcg of T3 (equal to around 200 of levo) around the dose of levo you took as we usually start on an equivalent dose.

The fact that you're feeling better already shows that T4 did you no favours.

Many cannot improve on levothyroxine which is T4 only and some may not be able to convert it into sufficient T3.

T4 - levothyroxine - is an inactive hormone. It has to convert to T3 but some cannot do so effectively so we remain unwell or dose isn't high enough. T3 (liothyronine) is the Active thyroid hormone and is needed in our millions of T3 receptor cells.

Weight should begin to reduce but don't get anxious if it is a bit slow to do so.

Blood tests should always be at the earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose (of thyroid hormones). Always get a print-out of your results for your own records and post if you have a query.

If you've not had B12, Vit D, iron, ferritin and folate tested ask for thes to be tested at your next blood test. Everything has to be optimal.

[ffranny]

Thanks for posting, my life experience with thyroid meds has been similar. I did not question T4 for years, trusting the NHS completely. After diagnosing myself through a womens magazine and insisting the GP test me I took T4 but all the symptoms continued and I ended up with more problems which now I see were thyroid related.

Did you get eye problems with Thyroxine? I did and got better when I stopped my prescription and took NDT and even better for me, T3.

All sourced mself though, I have had to abandon the NHS which I pay for and pay again for treatment that works, leaving me quite poor!

[Tiredtash in reply to ffranny]

My hypo symptoms never resolved when I started on T4 but at the same time they were not as bad as they have been over the last two or more years. I have had very tired exhaustive moments, anxiety, low mood and no motivation and puffy face and hands since the beginning but didn’t link these to my thyroid as I believed the docs were right ie being told my levels were in range and therefore my hypothyroidism is adequately managed.

I didn’t have eye problems although my prescription has worsened over the years so have to update my glasses every couple of years.

Re the NHS - it is very frustrating! My GP has dismissed the T3 request three times so I’ve been sourcing tiromel and paying £20 for a 100 x 25mg x

[Tiredtash in reply to ffranny]

Ps. One symptom that made me look into this more and more and helped me find this site is losing my hair. My hair has always been thick and over the last year my hairline has gone and overall my hair has thinned. Plus the weight gain has been awful! These two elements made me look at T4 more in-depth and fortunately lead me to this site and promoted me to give T3 only a go. Very weird how the aches and pains in my joints have gone completely and my brain fog has lifted a little. Fingers crossed I am in the right track. Just hope my weight and hair return to pre hypo state 🤞

[Marz in reply to Tiredtash]

In an earlier Reply I asked you what is your latest FT3 result ... do you have a copy you can post ?

[Tiredtash in reply to Marz]

No I don’t I’m afraid. I was last tested approx six months ago and told I was over range so should reduce the thyroxine. Did this and no change x

[McPammy]

Could I ask if you’re self funding your T3 please. I’m in the process of requesting a change from Levothyroxine to T3 as I truly believe it’s damaging my health. After 11 years on it, this spring something has happened to me and each time I take it I get severe muscle weakness all over my body. So bad I cannot walk or sit up anymore.

It’s killing me

Pam

[Tiredtash in reply to McPammy]

I am self funding it so not via the NHS. I can’t state for certain the T3 is working as I’ve only starting to take T3 on its own. I can say that I believe T4 was making me ill. It is weird how my aches and fatigue have stopped and reduced now I am not taking T4 x