FOR THOSE OF YOU ON NDT

Could I please ask what sort of levels your FT3's are at in order to feel well. Mine is currently 5.5 in a range of 3.1 to 6.8 . Those bloods were taken 24hrs after last dosage. I am currently on 2 grains of erfa and still struggling.

X

[Clarebear]

For me about 5.5-5.8 with the sand range and 24 hour gap as you. Some people probably need it higher than this though xx

[Hidden in reply to Clarebear]

Hi Clarebear,

thank you for responding. I was hoping you would because I've followed your thyroid journey with great interest. My Other bloods are

TSH. 0.01. 0.27. - 4.2

FT4. 13.9. 12.0 - 22.0

FT3. 5.5. 3.1 -6.8

I feel dreadful. Just so poorly and at my wits end. I had a testosterone implant put in recently as I have no ovaries and my testosterone level was none existant but I don't know if this will have effected my ERFA. I just don't know where to turn. I can't think straight. I just want to be in bed hiding. I want to cry and I feel so psychologically unstable.

I was on 1.5grains of erfa last year taken sublingually and I felt so much better. It did take time and I even started to lose weight and i felt well. it did take some tine and i religiously took my erfa at 6am because if i took it later than that my teeth would chatter.Then I foolishly tried T4 again and it put me back to square one. Since then I have been back on ERFA ( since April) Now I swallow my erfa with a glass of water because my endo prefers it that way. Who can I turn to now. I'm sorry to moan but it makes me feel less alone. I even wonder if I am over medicated? But I don't have a racing heart. But my TSH is very low.

I don't even want to go back to my endo because hell look at my results and they're fine!

So sorry to keep moaning.

Xx

[Clarebear in reply to Hidden]

Sorry I haven't replied yet. My elderly mum has had a bad fall and has broken her elbow/got concussion (as well as dementia). I am staying for a few days to help my dad. Xx

[Hidden]

Hi Joesmum, do you chew your Erfa before swallowing it with water? If you took it sublingually before and it worked better for you i would carry on taking it that way.

I believe when you have any meds with T3 in your TSH gets suppressed. I think you may need to go up half a grain and see how you go. How are your temperatures?

Hugs. X

[galathea]

Your endo prefers you to swallow them with water but they work better if you take them your way? Well is the endo watching you take them every day?

No of course he isn't..... Suggest you just take them any way you like.....

And lie to him!

Xx

[susymac]

I agree with the others, if it works sub-lingually (as is how I take mine) and doesnt seem to be working as well from your stomach then Id go back to taking it the way I was before, and I wouldnt bother lying to the endo but tell him straight his way didnt work!

[susymac in reply to susymac]

BTW have you had your foliates/ferritin etc checked lately, as the problem may not be entirely with the thyroid meds

[Jackie]

Hi I need my FT3 just under the top of range, so I need bloods done every 2 to 6 weeks, as over dangerous. I take armour and a little T3, Endo.I cannot take thyroxine.

Best wishes,

Jackie

[Hidden]

I am with susymac on this.... whilst NDT has some T3, it is still mainly T4, so you still need to be converting it well to have decent T3 levels, so it may well be you need more, but in any case I would be making sure Folate, Vit. B12, Iron/ferritin, Vitamin D3 etc. are all good too to ensure you do convert it as well as possible.

There is also the potential issue with adrenal output too, especially so as any T3 containing thyroid replacement is "hard" on adrenals too.

Have you also thought about splitting dose... I take mine split over 3x well spread out doses daily, as for me anything with T3 in it tends to make my heartrate go up and I feel uneasy if I take it in large "lumps!" Yes, I know T3 half life is a lot longer than that, just it seems to work better for me (and some others).

My TSH tends to go very low with any amount of external T3 too.. if your Endo knows what he is talking about he will know that can happen, and it's T3 that matters most, T4 less, and in your case neither are especially high(!)

[lizzie1]

Hi I have very similar results to you on 2 grains erfa Tsh 0.04 T4 14.6 and FT3 5.5 and I feel far from well. In fact apart from 2 or 3 days feeling slightly better I have gone downhill of late. My private doc was not happy with me having a low TSH. I was concerned that he did not seem to know that taking anything with T3 will lower your TSH so am not going back to him.

Am now at a stalemate. Do I up my erfa and have a nonexistent tsh. It would be just so nice to start to feel well after being ill for years.Have asked my GP about T3. Just had blood test today and going back to see him next week. Dont think he will trial me on T3 so dont know what to do at this point.

[Heloise in reply to lizzie1]

stopthethyroidmadness.com/n...

[lizzie1 in reply to Heloise]

Hi Heloise

Thanks for the link.

I have supplemented with iron for a long time now to get my ferritin up and assumed my adrenals might be unhappy so have taken lots of supplements to help them. I have not done the 24 hr stress test as I have read that most GP's don't even recognize adrenal fatigue, let alone treat it.So I thought what is the point of paying out more money for a test the GP wont act on. My private doc was against treating the adrenals saying they would recover when you are adequately medicated.

[Heloise in reply to lizzie1]

lizzie, here is another link about adrenals. Over the 20 years I've struggled with my Hashimoto's, I now think that almost everyone starts out with adrenal dysfunction. It is easy to fall into the fight or flight condition with a world that has one crisis after another. I'm sorry that most doctors feel the same as yours and think it is huge mistake. I would treat my adrenals and you can do it on your own unless you need cortisol.stopthethyroidmadness.com/a...

If you decide to do something about adrenals.

stopthethyroidmadness.com/a...

[lizzie1 in reply to Heloise]

Thanks so much Heloise.

Am going off to read your articles.

[Hidden in reply to lizzie1]

Hi lizzie1,

I'm so sorry that you are feeling rotten too. It's so frustrating isn't it. Did you leave 24 hours after meds before having your bloods done. They are very similar to mine. Also how do you take your meds? Sublingually? With glass of water on an empty stomach?

I've even read that we are supposed to take NDT 20 mins after food !! God it's so confusing isn't it.

All I know is that I can't go back to levo as it made me so ill.

Xxxx

[waveylines]

I take Erfa -and actually I didn't feel very well when I took it sublingual. This seemed odd to me as I always took Westhroid under my tongue and did very well....lol. I was told by a very well known good specialist that Erfa is designed to be taken and swallowed whole with water. So that is what I do and it seemed to make a difference though it is tricky to say so for definate -as at the same time I was also trying out supplementing with B12 & the B complex....

Generally I feel well if my FT3 is at the top of the range. My TSH is always suppressed.

I have to be honest though FT3 is not the best guide for anyone who is supplementing with NDT as the T3 in it does skew the result. Really you do need to go on how you are feeling. your signs and symptoms, pulse rate and temperature (outside of your period).

Personally I have found taking B12, complex b with folate in has made a big difference to my energy levels too! If I stop taking it -a) I loose energy and b) I need more Erfa.

[Hidden in reply to waveylines]

Think I'm going to try the B12, complex b with folate. Thank you wavy lines.

Xxxx

[Hidden]

Thank you so much for all your replies. They are brilliant and full of great insights.

It's astonishing how this illness can make one feel so vulnerable. Even though I have a great endo he is still not schooled in the world of NDT so I still feel very alone but I should at least be grateful that he is prepared to prescribe ERFA to me.

I shall keep re reading all these posts because its taking me a little time to compute everything (very muddled head) but its so brilliant to have your support and advice.

Big hugs and thanks

Xxxxx