T3 or not T3?

[Pinkpetite]

Hello. I posted a few weeks ago with my last blood test results and it looked like either I could up my levo or try T3. Since I knew my Gp would rather lower my levo (due to my very low TSH) I thought I'd try T3, particularly to see if it helped my mood, energy, constipation and motivation. (Going strictly gluten free recently has really helped my mood)

Anyway I am about 12 days on 6.25mcg and not really feeling anything atm. I thought I would get a private endo from Dionne's list to support me but on emailing him he said he doesn't agree with using T3 but will help me get my T4 perfect (I didn't send any blood results to him) and look at anything else that may be going on.

Are there some people who do absolutely fine on only T4 all their lives?

And what do I look out for as I increase my T3? I'm due to double the dose in a couple of days - would/could I then feel a difference? I'm on 150mcg levo so not a bad dose as such and my symptoms are mild compared to some.

I may just try and find another private endo. I was recommended someone out of London but was hoping to see someone who I could then see on the NHS, in London.

I wanted to give T3 a go to see, as I said once, if it was the missing link! But I may be one of those for whom an increase in levo would work fine.

[knitwitty]

hi Pinkpetite

What were your latest blood test results before you started the t3 and do you have up to date vitamin and mineral results ?

[Pinkpetite in reply to knitwitty]

Hello knitwitty

My last blood results at end of February were T4 15.1 (9-24)

TSH 0.01 (0.3-4.2)

Ferritin 65 (20-300)

Free T3 4.4 (2.5-5.7)

My B12 was very high, over 1,171 (160-800) as I had put on a very high strength B12 patch.

Folate was 20 (more than 2.7)

I am awaiting results of a vitamin D and iron panel test done this week. I supplement both of these.

[NWA6 in reply to Pinkpetite]

Hey Pinkpetite. Looks like you should have increased your Levo first and it’s just your GP’s incompetence that made you misunderstand that.

Your FT4 through range is only 40% and ideally you want that as high as is optimal for you, at least 70/80% (and maybe more we just don’t know what your optimal is).

Your FT3 is 59% through range which is obviously not high enough for you but probably suggests that there aren’t conversion issues which is one reason why people add T3. In this regard I’d be happy because T3 can be difficult to get hold off but on the other hand if GP’s don’t know the right way to prescribe and only go with TSH and range then GAH! Again that’s a problem.

Although Levo is easier to get hold of than T3.

T3 was a quick fix for me, I didn’t start it slowly, I felt better instantly. It’s been over a year now and I’ve only just gone hypo again. But to put it in context my ‘through range’ was 0% and I had a few years of results to show this despite my FT4 being low, middle and high in range. So I had poor conversion.

I probably would stop the T3 and increase Levo. Also make sure Ferritin, folate, Vit D and b12 are optimal.

Here’s the calculator if you want to use it for results.

chorobytarczycy.eu/kalkulator

[Pinkpetite in reply to NWA6]

Thank you so much for replying. Yes I stopped the T3 and have an appt next week with a private Endo. He said he will get my T4 perfect and will write to my Gp.

So I'm hoping I will get sorted.

I am also getting some vit D and iron panel results tomorrow so should have more of an idea what to supplement.

[Pinkpetite in reply to NWA6]

Is there a calculator in English?

[NWA6 in reply to Pinkpetite]

Good job. I don’t absorb/hold my Vits very well so I akways need to have them checked a couple times a year.

You don’t need a calculator in English it’s just FT4 (result) range (from) & (to) HTH

[Lalatoot]

Pinkpetite Adding T3 is not a quick fix. I am nine months into it and just beginning to get my levels and doses sorted. This last week has seen a big improvement.

[Pinkpetite in reply to Lalatoot]

Ok thanks, I am new to this idea and read that some people feel much better quite early on in treatment so was hoping.....

Great you're getting there!

[knitwitty]

Hi again

Looking at your results , you may be able to raise your t3 by an increase in levo alone as your t4 result is not that high, if you could manage that it would be far simpler than having to rely on the addition of T3 , NHS Dr's and Endo's are very reluctant to prescribe it and it is difficult to get a reliable and regular supply yourself if you decide to self medicate.

If I were you I'd try to raise your t4 and t3 levels by increasing with levo first and by optimising all your vitamins/minerals.

I was going to post a similar response to Lalatoot I have been taking t3 for almost a year and I increased my dose very slowly , I only take 12.5 mcg of t3 ( in two doses) and I did try increasing to a third dose ( another 6.25 mcg) but that raised my t3 to over the range so I dropped back to 12.5 per 24 hours and it wasn't until I had been on that dose for about 5 months that I started to feel properly well again.

I think some people do respond very quickly to the addition of t3 , but not everyone does sometimes it can take a while, I'm not sure if that is down to it taking some time for the T3 to get into your cells if they have been depleted for some time.

Also I monitored my t3 dosing by doing frequent blood tests when I had been on a stable dose for about 6-7 weeks.

How do you supplement vitamin D, I tried tablets (1000iu daily) and they did nothing to improve my Vit D levels. I now take better you ( oral spray ) 3000iu daily and that keeps my levels at around 100. I know having a low vitamin D level can also contribute to you not feeling well.

Good luck.

[Pinkpetite in reply to knitwitty]

Thank you. Sounds like I will have to be more patient! Not my strong point!!

What dose T4 are you on?

[Pinkpetite in reply to knitwitty]

Forgot to say I take 3,000ius in a capsule daily so will see what the results are soon. If they aren't good I do have the Better You spray as I bought it for my daughter.

[knitwitty in reply to Pinkpetite]

Hi again, I missed your last two posts because I went to bed!

I take 75mcg of levo and 12.5mcg of t3 . I also take half my T3 at bedtime ( around 11pm) with my levo and the other half first thing in the morning ( around 7 am) before I get up .

I know just how awful it is to feel unwell and the eagerness with which we want to see an improvement in our health, but if like me you have been unwell for years before starting any treatment , it can sometimes take months to start feeling better.

Good luck with your endeavours and I hope you are feeling much better very soon.

[Pinkpetite in reply to knitwitty]

Thank you!

[knitwitty in reply to Pinkpetite]

You're very welcome,

If you do decide to take T3 and you need any more information, PM me and I'll let you know what I did with regards to dosing etc...

If you are able to I would recommend the books by Paul Robinson , I can't remember the exact title but if you look on Amazon and enter his name the titles are self explanatory. I think one is called getting well with combination T3/T4 .

He writes in a clear and easy to understand manner and I read the books from cover to cover before I even contemplated starting taking T3 , since I had no help from the GP or Endo ( who suggested I just buy my own medication "off the internet"!!).

As I said before if I were you I'd try an increase in levo first to see if that brings up your T3/T4 levels to a point where you can alleviate your ongoing symptoms.

Again good luck and all the best for a swift (and if not as swift as you would like, successful ) recovery.

[Pinkpetite in reply to knitwitty]

Thank you so much knitwitty.

I am thinking now I'm going to stop T3 and see if I can get an increase in levo first. Strictly gluten free has helped a lot with my mood and lessened the constipation too. And I'm aware now of all the vitamins that I need to be optimal too. I feel this might be a better road to go down first especially since my ferritin has always been low and I've never been told it should be higher. So now I know what to do I will do these basic things first, good advice.

I just heard about that book so will look it up.

I bought my T3 off the internet but the site came recommended.

[knitwitty in reply to Pinkpetite]

I've just purchased some more T3 , mine came from Hong

Kong, and it was a recommended as a good site.

Take care.

[simonculley67 in reply to knitwitty]

Hi Knitwitty

Can you tell me the website where you bought your T3 from please?

[simonculley67 in reply to Pinkpetite]

Hi Pinkpetite

Can you tell where you bought your T3 from please?

[Pinkpetite in reply to simonculley67]

I private messaged you.

[Purpledreamer in reply to knitwitty]

Hello, jumping on the bandwagon here but can I ask you to explain what you mean by “feeling well” do you

Honestly feel normal? Or just better than you did? Do you

Have any persistent symptoms? I’m very interested.

[knitwitty]

Hi Purpledreamer

It's so long since I felt normal, that it's difficult to say if I am back to how I was before I had thyroid problems but there are many things that have improved.

I no longer feel that my life is pointless, I was really very down before I got my treatment sorted out, I no longer have palpitations and my anxiety levels are normal. My blood pressure has come down and my temperature has increased ( not by a lot) but I no longer feel freezing all the time. I can go for long walks and do not have to sleep in the afternoon. I can read books again and can concentrate on things , I found this really difficult when I was under medicated , so this for me is great as I have always been an avid reader. My skin is no longer flaking off through dryness and some of my outer eyebrows have grown back ( though not completely. I also sleep really well and don't wake up exhausted.

I just generally feel reasonably optimistic ( even during this pandemic) instead of dreading everything.

I also feel in control of my own health since I started taking the T3 , after being refused it by the Endo ( on cost grounds) and by the GP ( because they lacked the knowledge to prescribe it) . It rook me along time to pluck up the courage to start taking T3 as I was afraid of going against the Dr's wishes. I am glad now that I did , but it wasn't a quick fix , it was many months before I started to feel some sustained improvement.

Good luck if you are in a similar situation.

[GKeith]

I was on T4 for 28 years straight but then on a trip to Europe crashed when I ate so many "sugarless" meals. I had cold hands and feet for way too many of those years and my dose of 88 mcgs T4 had never been changed up or down. The over abundance of people on thyroid meds praising T3 was so overwhelmingly positive and my T4 was coming back way high even as T3 was way low, a sure sign I wasn't converting and I got my first ever endo who prescribed T3 at 30 mcg's and 50 of T4. I went up to 75 mcgs of t4 and 20 of T3 and then 100 mcg T4 and 10 T3 and eventually settled on 75 mcg T4 & 30 mcg T4.

The easiest medication to get is T4, (Levothyroxine) because it is cheap to make and even cheaper to prescribe but it's much harder to "partner" it with T3, due to price of T3and the medical ignorance of so many doctors, mostly GPs but many endo's also and so, if possible, you should get T4 only as long as you're converting. If you're not converting your T4 will remain high and your T3 will remain low and you will (should) have headaches and feel quite sick. At that point, as far as I'm concerned, you should try T3, which will seem to you like a "miracle drug" because it is very potent and its effects are almost immediate, whereas T4 stays in your body for over a week or more before you can clear it and clear you head to. I exaggerate when I say I consider T4 as headaches and constipation and T3 as diaherra and too much sweating. These are exaggerations but it is only to make you understand that T4 alone is (for most people) bad news; it's very hard to get rid of, whereas T3 almost immediately gives you a jolt of energy and if it is a bad reaction you can stop taking it anytime and it will disappear usually with 12 hours; 24 at most.

If I were just going on T4 and knew what I know now, I would try to settle on T4 alone but only because it's only one pill and it can be "checked" by taking your bloods: FT 4, FT3, TT4, TT3, TPOab & Thyroglobulin Antibodies, Ferriten, folate, B12 & Vit C to see how you are faring on T4 alone.Mind you once you begin taking T3 your blood tests will be unreliable due to a false T3 reading & whether or not T4 is converting to T3.

So, good luck, we all, eventually, become prisoners of the doctors and their pills and, unfortunately, they usually have judgement just as cold as their hearts have become. Peace be upon you and us all in these troubling times.

[Pinkpetite in reply to GKeith]

Thank you so much for replying GKeith! I have stopped T3 now. My last blood results showed a higher T3 than T4 and my T4 was the lower end of the range. So from what I'm learning on this site I do convert quite well but as quite a few people said to my first ever post maybe I just need more T4 or to try that first anyway.

I was in a rush to feel better and knew I would not get more T4 off my Gp so took things into my own hands.

At least I tried T3 briefly.

I have an appt with a private Endo next week who said he will get my T4 perfect! So fingers crossed!

If T3 leaves the system quite quickly then I should be ok to have the blood tests he recommends in a few weeks.

I am also strictly gluten free now so that will be 6 weeks gluten free too. I didn't know about the need for vitamin C testing? I know about all the others.

[GKeith]

You can take a blood test after 24 hours of quitting T3 but don't be so sure you are converting correctly until you go through at least two or three tests on T4 only. T3 is an exceptional drug that is misunderstood by many people, esp. when those people are doctors---unless they also have hypo or hyper-thyroidism. Always keep one thing in mind---no matter what you eyes see reading T3 & T4 ---it CAN be wrong --- the ultimate decider is you & HOW YOU FEEL! And, if you ever have any trouble post here; they are plenty of "doctors" who will "diagnose your bloods but with a heart not just a neglient shrug of the shoulders. Peace be upon you & us all in these drastic times.