Self medicating T3 need your help on test results

[aussiejune]

Hi everyone from Australia, this is my first post ever. I have such a long story but will try to keep it short. I have been taking Thyroxine 100mcg for almost 38 years for an underactive thyroid after having most of my thyroid removed back in 1976. I have never felt well but every time I told my doctor I was given a Thyroid blood test and told the results were normal. Last year I returned to the doctor complaining of hair loss which had increased significantly as well as all the usual symptoms I have been complaining about for years. Another blood test was done and I was told to reduce my dosage to 75mcg. I was so angry as I was feeling terrible and my doctor stated she was not prepared to increase it. I decided then that I had to take my health into my own hands and find an answer as something was definitely not right. I have spent the last year researching everything I could find on Thyroid. I went to see a naturopath who I thought may be able to help. I had thyroid blood tests including RT3 test which I didn't know existed. This came back as high so she referred me on to a doctor she thought may be able to help me. He sent me for a huge amount of tests and a further RT3 which came back as even higher than the first one. He put me on NDT I think its two grains. Every two months I had another blood test which came back with a higher RT3. My last appointment with him was in Dec 2014 when he said my Free T3 was now in the higher end of the range and I should be feeling better. He didn't mention a problem with the RT3 result. So after much research I have come to the conclusion that I have a problem with T4 conversion to T3 and decided to self medicate a trial of T3 only. Its been about 6 weeks now and I am slowly starting to feel a bit better. My hair isn't coming out as much, the pains in my legs have reduced and I am losing weight with dieting. Heres where it gets a bit worrying. I went to a doctor last week about some slight heart flutters I have been having lately. Everything appears to be normal but he sent me for a thyroid test and I didn't tell him I was no longer taking Thyroxine. Well the Lab rang him to see what was going on as my test results indicated that I had almost no T4 in my blood and yet I had said I was taking it. OOPs !!! Here are my results if someone could be so kind and tell me if they are as they should be being on Cynomel only. The doctor wants me to see an endocrinologist but I am not sure I want to. Please advise me, your thoughts are appreciated.

Free T4 <5.2 (9.0 - 19.0)

Free T3 2.3 (2.6-6.0)

TSH 0.01 (0.3 - 4.0)

I am taking 50mcg Cynomel which I got from Mexico. All my other tests are within range. I take lots of supplements as advised from all you lovely people. Should I be taking a bigger dose of Cynomel since my Free T3 level is low? I did stop the medication two days prior to the test.

I have taken my temperature every day for a year and it never goes above 36.5 usually much lower than that. I did request a 24 hr saliva test for cortisol as I do have a lot of stress in my life and I have chronic insomnia but the doctor had never heard of it and told me to ask the endo when I see him, if I see him.

Thank you all in advance.

[gabkad]

If you stopped taking the T3 for two days before you test, then your result is very artificially low. What dose regimen are you following? You should get tested about 6 - 9 hours after taking T3. That will give you a better idea of where you are at most of the time. It is most of the time that you are interested in as regards how you feel.

[Clutter]

Welcome to the forum, AussieJune.

Maximum 24 hours is all that's required between last dose and blood draw and 12 hours is probably long enough as T3 will be out of your serum after 6 hours. Nevertheless, I think your FT3 is very low on 50mcg T3 and you need to raise dose by 6.25-12.5mcg and retest again 6-8 weeks. Fluttering heart can be due to low FT3.

It can take up to 14 weeks off thyroxine/NDT to clear high rT3 and when it clears you can suddenly feel very hyper and need to drastically cut T3 dose. Having cleared rT3 it is worth considering T4+T3 combination. I can't tolerate T4 only but having cleared the build up of T4 I do well on T4+T3 and like the security of having some T4 in my system should I be unable to take T3 for a few days.

24 hour cortisol saliva tests aren't available on the UK NHS but can be ordered privately from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin... You'll need to contact them to see whether testing is available in Australia.

[aussiejune in reply to Clutter]

Thanks Gabkad for your quick reply. I have been intending to increase my dosage of T3 soon and see how I feel but got a bit worried with the heart flutters. I thought they meant I was taking too much although no signs of over medication happening to me apart from that. I didn't know that the heart flutters can be the result of not enough medication, that eases my concerns. I will increase my T3 by a small amount and monitor how I feel. Thanks again, it's reassuring to know there are people here to help.

[Mystory4u]

Hi AussieJune, I'm also in Australia. I recommend you see an integrative physician here as they are better at managing thyroid issues and the Australian Society of Endocrinologists (the professional body) has a statement about not prescribing NDT. So realistically you may need to be managed by an integrative physician. Also your high rt3 and poor conversioncan be caused by iodine depletion and low iron. Pay integrative physician has helped me convert T4 to T3 better but I'm still looking at combination of the two. If you are in Melbourne I can recommend an integrative physician and an endocrinologist who is much better than most, as far as I can tell and will help you with T3 therapy. Please send me a PM if you think this might be helpful. Thanks and good luck.

[aussiejune in reply to Mystory4u]

Thanks mystory4u. I am on the Gold Coast. Tests show my iron levels and iodine are normal.

[greygoose in reply to aussiejune]

There's no such thing as normal! Did you see the results? Was the iron at least mid-range? Just being 'in range', which is what most doctors consider to be 'nromal', is not good enough. Things have to be in the right place in the range.

B12, Folate and vitamin D should also be tested.

Hugs, Grey

[greygoose in reply to greygoose]

Forgot to say, if you are taking T3 only to clear rT3, you need a much higher dose. You need to swap the receptors with hormone. But increase slowly to avoid hyper symptoms.

[aussiejune in reply to greygoose]

Hi Greygoose

I have copies of all my test results for the last year. Prior to that I didn't know I could request a copy.

Iron 16 ( 5 - 30 )

B12 568 ( > 150 )

Folate 1174 ( 545-3370 )

Ferritin 206 ( 25 - 110 )

Vitamin D was 50 last year but have been supplementing this since and don't have a recent result. Ferritin is over range but I don't know what that means.

[Clutter in reply to aussiejune]

AussieJune,

Ferritin is stored iron and the body grabs iron from it as required and dumps excess iron back in. Over range ferritin if you are not supplementing iron usually means there is inflammation somewhere in the body. It can be from just a cold or virus at the time of testing and some autoimmune conditions also cause inflammation. It's a form of protection to deny the 'food iron' which bacteria and viruses need to multiply. Have a follow up ferritin test after 4-6 months.

B12, folate and iron look fine.

[Mystory4u in reply to aussiejune]

Too you have the level of your ferritin from last test? Can you post it here? If it's under 75 it's too low. If your hair is falling out it should be between 100-110. My conventional GP didn't pick any of that up, only my own research and then the integrative doctor. just saying ...

[aussiejune in reply to Mystory4u]

Hi Mystory4u

My ferritin result is 206 ( 25 - 110 ) so is over range not sure what that means.

[LMM01]

You might like to invest in the book 'recovering with t3' by Paul Robinson. Also on Facebook if you join the groups 'For FTPO Australia' and 'Hashimotos Australia' they have lists of doctors in your area who can help. I've just started T3 only too and it is important to use temperature, heart rate and blood pressure as well as how you feel to work out if you are on the correct dose.

[aussiejune in reply to LMM01]

Hi LMMO1

Thanks for your reply. I have both of Paul Robinsons books. I didn't know about the Facebook groups. I will have a look at them. I take my temperature every day and also my blood pressure and pulse. They are all in the good range but I think my pulse is a little low, sometimes its only 55 but usually 60 -65. How much T3 do you use if I may ask?

[LMM01]

I'm currently taking 30, 25, 10, 5 first dose at 4:30. Still fine tuning this, feel better later in the day but still pretty sluggish in the mornings. Im a bit nervous about T3 only but want to at least try it for the 12 weeks and see how much of a factor Rt3 is.

Did you know Paul Robinson also has a group on Facebook called 'Recovering with T3'? If you are using his method you can join that group and he and his admins will give you personal support and advice

[Clutter in reply to LMM01]

LMM01, FT3 is highest between 01.00-02.00 (see graph in link below) so it might help if you take a larger dose at bedtime maybe combining the 10+5mcg doses.

healthunlocked.com/thyroidu...

[LMM01 in reply to Clutter]

thank you Clutter. I don't want to take over Aussiejune's thread but that is very interesting info and could be worth a try. the only issue I have is that so far I'm finding I can't go longer than about 5 hours between doses (I start to get heart palpitations) so rather than combine the 3rd and 4th dose I might have to lower the morning ones so I can continue taking 4 doses in total - for now anyway.

[ging]

I am on T3 only now and was having problems with high blood pressure [which can cause a racing heart -]so I reduced my T3 slightly and only take 10mcg every few hours. My blood pressure was fine after that [I am on 60 mcg daily]