Hi I know this is probably going to be a stupid question. But being a bit cash strapped this month so ran out of NDT 3 weeks ago.
I was taking 60mg in conjunction with thyroxine , 75mcg - reason I was put on it was due to poor t3 conversion so whilst my tsh looked over supressed my t3 was always sitting at bottom of range, t4 looked ok.
Just couldn’t afford the £85 this month for my private prescription so switched back to my original gp prescribed dose of thyroxine - 150mg
The last 2 weeks I’ve felt shattered, streaming eyes, falling asleep at 8ish and so tired at work. I thought maybe I was a bit run down / a little sinusey too so thought it was maybe a bit viral . The last few days I’ve had a bit of a sore throat.
Would that be possibly down to the switch back to just T4 even though it’s equivalent ish dose in accordance to gps. Would the effects be so sudden?
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Bellsonit
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Bellsonit 'Would that be possibly down to the switch back to just T4 even though it’s equivalent ish dose in accordance to gps. Would the effects be so sudden?'
Yes, it certainly could be. In your situation, I would do something like this: Skip the 150mcg levo completely for one day. Then resume at a lower dose, perhaps 125mcg and see if you start to feel any better.
Too much T4 can be as bad as not enough, so no, lowering your dose of levo would not necessarily make you feel even more tired. The only way to find out is to try it of course.
You're not contradicting me DD. I was simply making a suggestion on how Bellsonit might proceed *without* the NDT, given that the cost has meant it's not available to her right now. Bellsonit may well need more T3, but if conversion of T4 isn't working, then it may be worth trialling a lower dose of levo to see if the symptoms might improve a little until she can resume a combo that works for her.
[Edit: My point being that I know from experience that excess T4 can cause tiredness irrespective of a need for T3. ]
If T4 to T3 conversion is impaired then reducing T4 is likely to have a negative impact....it may not be by much but depending on her conversion rate an increase in T4 may provide a little of the extra T3 she requires.....just 9mcg from NDT
You say...Bellsonit may well need more T3, but if conversion of T4 isn't working, then it may be worth trialling a lower dose of levo to see if the symptoms might improve alittle
I doubt her T4 to T3 conversion has stopped entirely ( isn't working) and given that 9mcg has been enough to help, more T4 might contribute a little extra T3.
From her reaction to missing NDT ( and it's T3 content) we can be fairly confident that she needs to get T3 from somewhere....and more T4/ levo is an immediate possibility. No waiting for delivery or endo appointment. Presumably she intends to buy more NDT when she can.
If ( cellular) T3 is low, we can suffer all manner of ailments....and, that nearly killed me after decades of wrong diagnoses and treatments.
I'm assuming you feel it might be the T4 that is the problem, please can you explain why?
So combo you have just stopped was 113mcgT4 + 9mcgT3
Currently you are taking 150mcg ( mcg not mg) T4 mono
Therefore, your T4 dose is now raised by 37mcg ( and no T3)
Your conversion is poor so the changes are strong that you are lacking T3 now, and the 150mcg is unable to produce adequate T3....which appeared to be around 9mcg.
You have become T3 deficient....your cellular level has been reducing over the last 3 weeks and now you are suffering the consequences!
For good health every cell in the body needs to be flooded with T3 ( the active thyroid hormone) by way of an adequate and constant supply.....your current dose isn't achieving this.
Symptoms can quickly appear! Been there!
As a temporary measure you could try increasing your T4 to 175mcg in the hope it produces a little moreT3.
9mcg in your NDT dose is not a huge dose....so more T4 may help a tiny bit!
Your GP should have the nous to understand you depend on that T3....they are often poorly educated re thyroid disease!
You can prove that without the added T3 you suffer!
GP should work to alleviate this
So.....request an appointment with an endo....beg if you must, but do it calmly otherwise they are likely to suggest it's all in your head!!!
With your history ,T3 should be prescribed so that you avoid a situation like this.
Initially the endo should prescribe theT3 during a trial period.....maybe a combo of 100mcg T3 + 10 mcg T3. This could vary during the trial.
If endo can be convinced to prescribe then he should pass the prescribing to your GP after the trial.
Don't accept dose changes on the basis of TSH....FT3 followed by FT4 are the important labs
Have you optimised Vit D, vit B12, folate and ferritin ....essential to support thyroid function.
I need high dose T3-only ( 100mcg) to function so have travelled the road!
We need what the body needs and it's the medic's responsibility to treat you back to good health
Sorry this is rather long winded, hopefully it might help
Hi not long winded at all, this is extremely helpful thank you
Its a shame that the endo I went to preferred NDT as whilst I get on well with it, my GP has said he can't prescribe it and everything is costing so much at the moment - I might have another push with the gp based on the above and see if there is anything that can be done as he has been sent a letter by the endo.
I have never tried T3 only because my endo said that he preferred the more gentle T3 but if he'd have given T3 I'd probably be able to get it on NHS prescription now. I think I'll see if i can get a new endo that will prescribe T3.
Moving to NDT did really improve my T3 range to the top end, so it definitely has a positive impact.
When I was first put on NDT, I was put on 30mg and 125mg T4 and my TSH barely changed - it was less supressed but barely different. It was TSH - 0.01 (range 0.3-5) Free T4 - 22.2 (range 12-22), T3 - 6.6 (range 3.1-6.8)
150mg T4 only was TSH - 0.02 (range 0.3-5), T3 - 3.7 (range 3.1-6.8)
So the endo changed me to 60mg to try and have less tsh suppression. Nuffield messed up so I haven't got the blood results for that.
My tsh barely moves irrespective of whether I have my dose reduced, but my t3 does dramatically change.
I've hashis and a goitre but that means nothing to my gp.
Yes I've been doing the vits, endo told me to do vit d at the very least - I must get a repeat of the vit bloods asap.
Just struggling cash wise this month and have paid the consequences by the sounds of things as it has had a knock on effect - and doesn't seem like I'm suffering the effects of a virus.
Yeah i know what you're saying - reading the above, it does seem there is a definite correlation between the switch from combine t3/4 to t4 only. I didn't think it would hit me like this
It hit me like a ton of bricks, and I stayed the course for 8 months too long on levey and gained 2 stone plus and other health problems. Thankfully I'm now on the road to recovery.
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