Good new from gp: As some of you know I have been... - Thyroid UK

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Good new from gp

tuf5ty profile image
19 Replies

As some of you know I have been hypo for nearly 20 years and am on 175mgs of levothyroxine. To cut a long story short I paid and had private tests in hopes it would show a conversion problem. Which it did. I saw a gp at my local surgery who agreed to prescribe me t3 only. I was taken off my levo and put on the t3. It really did not suit and my own gp put me back on levo only as I couldn't function. I asked her to refer me to a private endo. She said she would write to a local nhs endo to ask advice and if I wasnt happy then she would happily refer me privately. The letter came back today and the endo has agreed to t3/t4 combo. He had suggested dropping levo from 175 to 100 and adding in t3 of 10 twice per day. I am a bit concerned about dropping my t4 so much and adding in so much t3. I think I will leave t4 as is and add t3 in of 5 and gradually increase it and gradually reduce t4. Really pleased that the gp listened to me and that the endo also agreed to help without seeing me.

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19 Replies
PinkNinja profile image
PinkNinja

I like your plan of gradually increasing seeing as how you didn't do well on T3 only. Perhaps reduce your T4 by 25mcg and add in 5mcg of T3 and do this every week or so, depending on how you feel.

Don't forget that iron is really important. If your iron or ferritin levels are not optimal (ferritin 70-90) you may find that you don't tolerate the T3 and it builds up in your system causing you to feel rubbish. If you haven't already had your iron and ferritin tested, please do so. This could be the missing piece of the puzzle.

I'm really pleased you found a good doctor :)

Carolyn x

tuf5ty profile image
tuf5ty in reply toPinkNinja

Carolyn,

Thankyou. I will do that I think. I don't want to rush things a feel unwell. I work and have a very active 2 year old so need to try and stay as well as I can

I had all my vits tested and b12 was fine. Vit d was fine. Folate wad low and gp tools me to supplement with folic acid. I am taking a good quality b vit complex and I also supplement my iron with Spatone. I take magnesium too.

I. Take my levo at night so should I take the t3 in the morning?

marram profile image
marram in reply totuf5ty

It is generally recognised that taking your first T3 early (about one and a half hour before you normally get up) is the closest to nature.

When it comes to the later dose, it can vary. Take an example of someone on 20mcg daily.

Some quite happily take all 20 in the morning. And for some people, taking all their T3 at this time works fine.

For others, 10 twice a day might work well.

But some find this might make them feel overdosed after the second. Instead, they split the second dose and take it 6 and 12 hours after the first, or possibly even more spread out.

Your plan to do it gradually is very sensible. I have done exactly the same. I have even split the tablet into four!

This is my personal experience:

I have discovered that even the tiniest amount is effective, so I began with a quarter tablet in the mornings, then after a couple of weeks I reduced the T4 and added another quarter in the afternoon, and after another two weeks took a half in the morning and a quarter in the afternoon, and so on. I also discovered that, in my case, I had a very slight buildup so after I began I found the next day the residual effect meant I needed less for a time, so I dropped back a bit and then started building up again. But most people do not find that. I was also more cautious than other people because I am older and have had some heart trouble. Now I am taking some T3 most of the palpitations I had have gone.

It is very much trial and error because we all process medication at different speeds.

I hope it goes well for you, and remember that patience is a great help with T3, and that we are all different and you need to do it your way!

Marie XX

tuf5ty profile image
tuf5ty in reply tomarram

Thanks. Makes perfect sense.

PinkNinja profile image
PinkNinja in reply tomarram

Pretty much what I would have said :D

I'm one of the lucky ones who could take T3 all in one go in the morning... until it was taken away from me and I was told to take levo like everyone else because it's "better". Luckily I have that issue sorted out now!

Beahirsty profile image
Beahirsty in reply tomarram

Hi I was on 350 thyroxin for over a year as my ths levels on 200 of the Tevo were 25 :( I thought I was going mad I'm on 250 of the Mercury brand now but have palpitations and have Afib which I think is caused by too high a dose I don't know if they do anything for t3 levels in the U.K. do you ?

tuf5ty profile image
tuf5ty in reply toPinkNinja

My seum ferritin a few months ago was 46.

PinkNinja profile image
PinkNinja in reply totuf5ty

This is too low really. You may find you feel better, and have an easier ride with your T3, if you get your ferritin up. As you are taking spatone I should think that would help. If you are only taking one sachet, you may want to go to two for a couple of weeks. Taking vitamin C and B2 is also important while you are taking iron :)

tuf5ty profile image
tuf5ty in reply toPinkNinja

I always take spatone with a glass of orange juice. And I take a b vitamin complex supplement too.

PinkNinja profile image
PinkNinja in reply totuf5ty

That's good. It should hopefully help!

Connor10 profile image
Connor10 in reply toPinkNinja

Hi sorry to butt in , I totally agree with what you say about the t3 causing problems if iron or ferritin is low ,I tryed t3 with thyroxine aswell as recommended by my specialist and felt terrible so stopped it after a week. I then had a ferritin test and it came back as 12 which I told my doctor was too low and they put me on iron tabs im waiting for that to increase so I can introduce t3 again .

PinkNinja profile image
PinkNinja in reply toConnor10

You may find you can already tolerate very small doses of T3 if you are taking iron now. Just make sure you don't take them within 4 hours of each other :)

Connor10 profile image
Connor10 in reply toPinkNinja

Ok Thankyou I will give it a try again ,hopefully I will feel a lot better once on the t3 again .

Marz profile image
Marz

...when you say fine for B12 and VitD - what were the levels and ranges ? Sounds as if your Ferritin needs to be higher.....

tuf5ty profile image
tuf5ty in reply toMarz

I am in the upper quarter for b12 and d. There is no frame for ferritin and i asked and they said it was fine. Will supplementing worth Spatone be right.

Marz profile image
Marz in reply totuf5ty

...perhaps take a look at grassrootshealth.com for good information on where your VitD should be. Also b12d.org for B12. I was under the impression that being near the top of the range was more preferable for thyroid sufferers.

Have read on this site that Spatone is the preferred treatment for Iron as it's gently on the stomach.

Hope you soon feel good........

PinkNinja profile image
PinkNinja in reply toMarz

I take spatone and it seems to get my iron up quite quickly. I start with 2 sachets a day (3 if I'm actually anaemic) and reduce after a couple of weeks.

Liver is good too :D

clarence2013 profile image
clarence2013

Hi I'm having the same predicament- which test did you have and where did you get it?

tuf5ty profile image
tuf5ty in reply toclarence2013

In did the 24 hour genova test and then after the results The gp them got t3 done on the nhs.

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