Can I change from levothyroxine if I still don't feel well?

[emmaw79]

I have an under active thyroid and have done for almost 11 years. My hair still falls out I'm still putting on weight, I have episodes where I just get a bit lost or forget what am supposed to be doing and my mood swings are driving me and my family nuts. My latest blood results were Tsh 0.04, Free t4: 20.2, and total t3: 1.6. My gp wants to reduce my dose of 175mcg but I'm scared i'll feel worse. Help!

[scousegirl]

hello emmaw79,I too have an underactive thyroid for years & years,on levo with no sympton relief.I have recently gone on a combination of levo & T3,I can honestly say that it has changed my life.It was not easy as I had to drop my levo down a lot & only then could my GP fill the gap with T3.I am still working out the best times to take my meds but so far so good.Why I have had to suffer for countless years(I'm 70)I don't know but I have a good doctor now who was willing to try T3.Research it & then talk to your doctor.You may have to be persistent.good luck

[emmaw79 in reply to scousegirl]

Thanks, it's a fair battle with my gp! I'll keep trying! Was on the verge of going private but fear has stopped me. I'll get reading up on t3 and try again with my doctor

[Hennerton]

Your T3 is very low. I thought mine was bad, when blood test revealed it was under the reference range. I would guess you are not converting T4 to T3 and so your cells are not receiving any T3. No wonder you feel ill. I was the same but saw an endo privately and managed to get some. It has made a big difference to me, so as Scousegirl says, be persistent! Actually I am fairly speechless that your doc would see that low T 3 result and do nothing. Makes me so angry! xx

[emmaw79 in reply to Hennerton]

Makes me v frustrated too but I don't know what to say. I don't fully understand my results. He told me to lower my thyroxine and I'm scared too

[Jackie]

Hi You really nee a Free t3 test, my Endo says the other one is useless. it is very likely that you need some T3 on a script to go with the T4 ( thyroxine) but have a test first.Also you may be better on T3 and a little less T4. It can make a huge difference to lots of the symptoms.

Best wishes,

Jackie

[emmaw79 in reply to Jackie]

Thanks Jackie, I've a list now to take with me to try again to get help x

[marram]

Not sure if you noticed, Hennerton, that it is 'Total T3' which has been measured, which is always much lower than free T3.

The free T3 is really the one which will give you some clues, emmaw79. The fact that you are suffering symptoms suggests that somehow the medication is either not working or you need a higher dose, but without the range for the free T4, and the free T3 result it would be difficult to pinpoint the actual reason. 175 could actually be too much even though you are still hypothyroid, particularly if you are not converting.

There are many reasons why this could be the case, the first thing to look at is your vitamin and mineral levels, notably ferritin, Folate, Vit B12 and Vit D. If any of these are less than optimal, it could hinder conversion. Another thing which could hinder conversion is low adrenal reserve, because the cortisol produced by the adrenals is also needed to convert.

The primary thing to look at is the free T3, that definitely has to be the starting point. If that is low, conversion is a problem and you need to find out why. If it is high, then reverse T3 would have to be considered.

It all sounds very complicated, but it is actually simple. The first step - measure the free T3.

Marie XX

[emmaw79 in reply to marram]

Thanks for that Marie. I'll be honest and say I'm a wee bit confused but I'll try my best. The range for free t4 is 9-24pmol/l. I've started to take vitamins A, C + E with selenium, zinc and and vitamin B complex to try and help my body as much as I can. I'll try and see if I can get doctor to do another blood test for free T3

[shaws Administrator]

This is from Dr Lowe and I know there has been research in several countries re weight gain whilst on T4:-

“. . . in a study of patients made hypothyroid by therapeutic destruction of the thyroid gland, some used TSH-suppressive doses of thyroid hormone and others used T4-replacement. Those on TSH-suppressive dosages did not gain excess weight; those on T4-replacement did. The researchers concluded that T4-replacement was the cause of the excess weight gain.[55]”

web.archive.org/web/2010112...

If you get a booklet from Amazon, I have been told that it is good for GP's to read as well - it also says some need T3 added to a reduced T4. So your GP should add some T3 to see how you get on. When T3 was added to mine it made an enormous difference to my wellbeing.

Some doctors may ask for T3 but some labs don't do them if the TSH is within range. You can get a free T3 test from one of the labs in thyroiduk.org

thyroiduk.org.uk/tuk/testin...

If you want to change from levothyroxine you may need a referral. Ask your GP if he will refer you to an NHS one before that email [e-mail] for a list of sympathetic NHS Endos/private doctors. Hopefully an NHS one may be nearby.

I think you are entitled to someone looking at you with a fresh eye.

[emmaw79 in reply to shaws]

I'm not exaggerating am nearly crying reading your post. Thanks very much. I don't think I've had this much help for my thyroid! I'm out just now but m gonna try and print this stuff off. Got my gp on Monday again to try again to get help. So any help you can give me or stuff I should give him to help me I'd love. Thanks very much. X