Thyroid results

[Bagpuss]

HI

I have been unwell for 10 years and thyroid is just part of it but I cant seem to get my levels quite right. I did NDT for a while and did better on it but cant afford to sustain so I so went back to thyroxine. Endo is T3 friendly so I still have that on script for now! he suggested I leave it out for a short while whilst we increased Thryoxine to see results and then decide what to do.

So latest results on 200 mg Thyroxine are

Free T4 16pmol/L range 9-24

TSH 3.1mu/L range 0.35-5

Free T3 4.6 pmol/L range 3.5-6.5

T3 is not increasing despite a higher T4 dosage - I think I have gradually gone to 200 mg from starting slowly. Last year was on 150 mg and T3 was same or a bit higher.

I did have the problem conversion gene on the 23 and me test. I would like my T3 to be higher in range?

Im wondering whether to go to 225mg Throxine next with or without a little T3 ? Will look again at NDT cost too, but I feel I am still undermedicated ?

Obviously I am unwell with other things but I am exhausted constantly and hair is bad and I cant stop sleeping. Weirdly though I am always boiling hot and head and face is sweating badly.

Thanks

xx

[shaws Administrator]

Research (by several different researchers) have shown that some people cannot recover until they take a combination of T3/T4 (1 to 3 or 1 to 4 basis I believe).

If you have a problem converting T4 to T3, then I wouldn't bother taking T4 - you could also have something called Thyroid Hormone Resistance, which means that we cannot convert T4 at all and have to take T3 alone. Some need higher doses of T3 to relieve all of their clinical symptoms. That's the purpose of thyroid hormone replacements - that we feel well and back to normal wit5h no symptoms.

You are on an insufficient dose at present due to your TSH not being 1 or lower. 3+ is high when on replacement hormones. Free T4 and Free T3 are more informative that T4 and T3. I link below:-

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

p.s. there's no background of your thyroid journey on your Profile, only your name.

[Bagpuss in reply to shaws]

Thanks Shaws. I will update my profile with more info! Im am glad you agree I am undermedicated and 200 mg is quite a high dose right ?

I tried T3 alone but it didn't suit me as I have autonomic issues and it worsened the tachycardia when I tried to increase the dosage and didn't feel much better until I got higher.

I then tried the naturthroid and that is when I felt i was doing better and my levels looked better - my TSH went down to 0.79 and my T3 was at 5.7. My T4 didn't go up but I think that is because of the T3 content in the NDT?

I dont know if I cant convert at all or am just a poor converter but I def felt better results on NDT but have problems affording it long term so I feel my only option is to add some T3 now which I am currently still getting on script ?

These are free t3 and T3 levels - i will edit my post to reflect that - thanks for highlighting.

Im planning to get a RT3 test too to see that level which might give me more info ?

Thank you x

[shaws Administrator in reply to Bagpuss]

If you feel better on NDT that's for you. A pity the NHS withdrew it - mainly due to False Statements which Dr Lowe one of our Advisers refuted and wrote to them every year for three years and even though he requested a response before his death, they never did. But at least we can read and can surmise what's going on.

thyroidscience.com/Criticis...

[Bagpuss in reply to Bagpuss]

yep - unfortunately I cant afford it! Its hard to unravel my symptoms as I have so much else going on so I can really only go on any improvements I get and blood results.

yes it is all a pitiful mess with the prescribing .

xx

[Marz]

Am wondering how your levels are of B12 - Folate - Ferritin - VitD ? They all need to be GOOD for your thyroid hormones to work well in your body. Are you taking any other meds that are contra-indicated with your Levo ?

[Bagpuss in reply to Marz]

yes my levels are all good as I have worked on them and know that they need to be optimal. I dont take anything else that Im aware is contraindicated and I do take thyroid meds first thing on empty stomach. I find it odd that my T3 hasn't increased though - I think I must be pooling the T4 but Im unsure what to do about that as I didnt get on with T3 alone.

[SlowDragon Administrator in reply to Bagpuss]

Have you tried adding small dose of T3 to Levothyroxine

Also do you have Hashimoto's?

[Bagpuss in reply to SlowDragon]

I haven’t tried adding T3 recently no.

As far as I know there have never been any antibodies showing - so no I don’t believe I do have Hashis.

[SlowDragon Administrator in reply to Bagpuss]

If your endo is T3 friendly then it's a good option to try it

Like Levothyroxine, different brands of T3 give different results

[Bagpuss in reply to SlowDragon]

Thanks. Yes maybe this is next option to try ....... I have looked back on my results , and see that the one time I had low TSH , higher t 4 and T3 was when I was taking NDT so maybe it just does suit me better.

Will try your suggestion first thoogh as I still have 20 mg T3 in my regular prescriptions.

[thyroidquestions in reply to Bagpuss]

Hi Bagpuss. Out of self-interest, which NDT were you on, and have you tried more than one type of NDT?

[Bagpuss in reply to thyroidquestions]

Hi

I tried naturthroid. I didn’t try anything else as they seemed more expensive.

[thyroidquestions in reply to Bagpuss]

Thanks! Interesting

[silverfox7]

Results, even without ranges look better on NDT. Reading results is differentcasxwell as TSH should be suppressed, FT4 can reduce because of the T3 content and FT3 should be high in the range as you are getting the right dose of T3. The only downside I can think of with NDT is that you don't know about conversion issues but if on right dose everything works well.

[Bagpuss in reply to silverfox7]

Thank you. I understand what you are saying about results on NDT. I can’t seem to get my T3 to get higher in range on T4 alone. However maybe I said furstly try a small increase in T4 and then add a small dose of t3.

[emilybentz]

Can i ask what the convetsion gene test is you are talking about? I did the 23andme test as well but i cant find it??? Thank you

[Bagpuss in reply to emilybentz]

Hi Im so sorry I didnt see this for some reason ...........

Here is a page that goes through the snps relating to thyroid

geneticlifehacks.com/thyroi...

Hope this helps ! the conversion Snp is rs225014 and its DIO2 the gene associated with poor conversions I think. xx

[emilybentz]

Thanks...but forgive me i am still so confused. Im trying to see how i can post my results from 23andme to try and get some help understanding them . Ugh but i dont know how too. My number is 772.763.9900. If you dont mind i could screenshot them and send them to your cell if that is not too much trouble?

[Bagpuss in reply to emilybentz]

You don’t need to post all the raw data.

On the 23 and me home page - click on the your name on the top right and select browse raw data.

Then when your raw data comes up you have a search bar in the centre of the screen. Go through the article I posted and enter each of the snps it lists that relate to thyroid. Compare your results with the info on the article .......

The one that relates to conversion is DIO1 I think primarily and is discussed at the bottom of the article.

Im in the UK - think you are in the US ?!

Hope this helps you find what you need xx

[emilybentz]

Thanks again for taking the time to reply back. I did compare them but the numbers it gave me are different than yours...maybe they dont check the same anymore? I have searched the intertnet trying to figure out what some of these mean. My main goal with the 23andme test was to see if i convert t4 to t3. These are my results. I wish i knew ehat my genotype variants mean. Do you know where someone could help me find this out? Thanks again for your time.

DIO1 rs2268181 T/T

DIO1 rs76216961 G/G

DIO1 rs2235544 C/C

DIO1 rs148364500 G/G

DIO1 rs11206244 C/C

DIO2 rs77075531 C/C

DIO2 rs12885300 C/C

DIO2 rs7145153 G/G

DIO2 rs17176580 T/T

[Bagpuss in reply to emilybentz]

Hi - so if you enter the snap numbers from the article which relate to the conversion of T4 to T3 you will see what might be relevant to you.

So you enter the snp number into the search bar as I described above - the first one the article gives relating to conversion is :

rs2235544 (v.4, v.5):

AA: decrease ratio of fT3 to fT4, decreased free T3 [ref]

CC: increased free T3 and decreased free T4

so looking at your results you have C/C which means you have might have the potential to make more T3 and decreased T4. ( according to the article info ).

The next one is

rs11206244 (v.4, v.5):

TT: higher rT3, lower free T3 [ref]

CT: lower T3

CC: normal

looking at your results you have C/C so you show normal on this.

the last one the article suggests looking at is

rs225014 (v.4):

CC: decreased DIO2 enzyme (T4 to T3 conversion) [ref]

CT: decreased T4 to T3 conversion

TT: normal DIO2 enzyme

You dont show this snp in your results but I am unsure what that might mean - could be that 23andme changed their tests a bit so its not looked at anymore as they change the version every so often which alters which snps are tested I think.

Also, the genetic tests are meant to be looked at as whole really so looking at individual snps which is only the potential for decreased function is not the way its meant to be used . Ideally you need to find a good practitioner who can assess the whole picture with all your symptoms especially as research is now showing genes can switch on and off ! Im not an expert at all but I think there is a specific blood test you can take to show this conversions issue for the DIO1 - but you would need to research this where you are as might be different in the states. Hope this helps xx

[emilybentz in reply to Bagpuss]

Thank you so so much for your time in responding and helping me out. Greatly appreciate it!

[Bagpuss in reply to emilybentz]

Hope you get the help you need ! Think I forgot to post the website link

purehealthclinic.co.uk/

Xxx

[Bagpuss in reply to emilybentz]

look up Ben Lynch or find someone locally who can decode the genetics for you along with looking at your whole picture.Good luck ! x

[Bagpuss in reply to emilybentz]

take a look at this website - lots of info and I would recommend you maybe ask Micki who is the practitioner who runs it for more guidance - she is in the UK but no reason why you couldnt have a Skype appt if you can figure out the time differences ! I think she has someone on her website who specialises in the genetic side of things xx