Long time guys!
Peculiar results today. RAI in 2014 and unwell since. Trialing 20mcg T3 and ERFA 30mg
TSH 9.04 (0.27-4.2)
T4 3.9 (3.1-6.8)
T3 10.5 (3.1-6.8)
TSH is usually well suppressed so hard to know what to make of these results. Still feel dreadful and think I’ve exhausted these medications and will go back to levo but curious to know what you think of the results please.
Hi, I had RAI in 2018, I have learnt not to look at numbers as they never seem to be right. The more I try to get my numbers in the higher range or lower with TSH the worse I feel. I now go by how I feel, plus I'm trying to heal my liver as it seems the RAI was the last straw for it which can make you feel awful as its not working how it should. 🙄 I'm currently taking 50mcg levo and feel better than I ever have since having RAI. I think maybe because having RAI actually makes you feel like crap because of what it does to your body it makes things harder to judge what symptom is what. What are your vitamin levels like including calcium, phosphate and magnesium? Do you know? RAI depletes most of these along with the usual vit d, b12, ferritin and folate.
I used to take 125mcg levo and felt no benefit hence exploring alternatives. How are you helping your liver? Did you use to take a higher levo dose?
Vitamins all ok. RAI was 2014 and it was nine months after that I went hypo and started being unwell.
I have tried 150, 125, 100, tried alternate the doses, tried t3. Tried Internet meds, the lot. If I go high i can't think straight, I clench my jaw, my hr slows down to the point i feel ill, it's really bizarre. T3 helped for a bit but then I just got bad headaches and my eyes were painful. To help my liver I am avoiding gluten, dairy, eggs, pork, soy, rapeseed oil and corn. Drinking fresh celery juice every other day and on the other days fresh lemon juice in cold water. Drinking them in the morning on an empty stomach when waking. My liver is quite inflammed, I bloat to and uncomfortable point. Changing my diet has really helped and I really notice the difference if I deviate from it. I take lactose free levo aswell, that made a massive difference, I take Aristo.
Hey there Caz:
How are you feeling - as bad - marginal - don't know - improved :
How did you get to this dose ?
I'd be inclined to say you need more NDT for it to be of any value -
so likely suggest dropping the NDT :
I read the average person needs around 50 mcg T3 daily, to function, though do wonder if this applies to those of us who have had RAI thyroid ablation for Graves.
Unless you want to build up the NDT in which case slowly reduce the T3 weekly and compensate by adding in 1/4 grains weekly of NDT ;
Or - add back on some T4 to the T3 if you are looking for a more balanced T3/T4 reading :
As for your TSH - I've learnt to ignore it - though mine is stuck down at 0.01 :
The TSH ' reads ' very high here suggesting you under medicated but with a T3 over range ?
Guessing you're under the range for T4 - so no T4 to speak of which is logical - so no reserves and more or less, totally reliant on T3 supplementation.
Are you splitting this dose - and how long did you leave from main dose of T3 to blood draw ?
Obviously I'm presuming optimal vitamins and minerals are in place:
Hi pennyannie. I hope you are well. I’m under endo in Taunton and the idea was to try T3 mono and bin off the levo. I feel the same. Perhaps more tired and lightheaded than normal.
I was used to suppressed TSH and low T4 and low T3. That’s always been my norm whatever I take. This reading is odd so much so the Drs called me today about the results. I said I’m seeing endo end of month and will probs go back to levo alone.
Is this a private or NHS endo in Taunton -
I think s/he needs to see this result as they are currently responsible for you and your treatment.
It could be a Lab error and to be sure the blood test should be rerun ?
How long were you on this dose and what time elapsed between your dose of T3 and the blood draw ?
Private endo. Maybe I’ll do a quick test at home via monitor my health. I was trying to save money hence used NHS this time for bloods. I think I’d left it 24hrs from last dose! Very odd isn’t it.
Maybe call back the doctor who phoned you and ask if you could be retested as this covers his back as well - as having actioned and done something about the ' odd ' readings - ??
Lucky you managed to get all 3 readings done on the NHS.
I do remember I had a TSH up in the mid teens around 7/8 years post RAI thyroid ablation and then it fell back down below range like every other time - and this could have been the turning point and when I started to fall into 2 years of an ever decreasing circle of wellness - maybe this was when my thyroid was fully burnt out and totally disabled ?
I didn’t think to do that at the time! Maybe it’s a one off. Anyway it’s good to have a higher T3 for once but sadly I don’t feel any benefit from it. Pretty sure he will say we have exhausted it all as far as thyroid meds go.
CFS was the original diagnosis from GP and symptoms fit but I refused to accept this for so long. Little choice now I suspect!
Thanks for your replies. It’s lovely to hear from you and I’m glad you’re ok down in sunny Cornwall! Same old here. Daily struggle!
What is the range for T4 :
Could T3 and T4 readings be the wrong way round ?
Don't shoot me - I'm just the messenger !!!
the t3 makes sense just not the tsh!
I'm ok thanks - soldiering on alone -
no other choice really -
and found NDT the best treatment option for me :
I think RAI is the key here.
Your labs suggest a failing thyroid.
In that case the thyroid/ body ramps up T3 production to try to maintain body function....your FT3 is elevated.
The higher hormone in this instance doesn't necessarily resolve symptoms....you are still symptomatic.
Your dose...
30mg ERFA with 20mcg T3
30mg ( half a grain) ERFA contains 4.5mcg T3 and 19mcg T4
Total dose = 19mcg T4 + 34.5mcg T3
I'd suggest you are extremely undermedicated.....hence the ramped up T3
TSH is not a reliable marker but in this case it rings alarm bells indicating hypothyroidism
You've had RAI so your thyroid will be struggling
Hypothyroidism frequently follows RAI and your hormone levels have likely been slowly falling following the treatment until the current situation has developed.
Have you noticed a drop in thyroid test levels?
Your current replacement hormone dose is now far too low and you are suffering as a consequence
You need to be prescribed an appropriate dose of either T4 or T4 +T3 or as more ERFA...consult your GP or endo for this
Hi DippyDame. I hope you are well.
Ive been trying various meds with endo and this more or less mono was the last stab at something. My labs are always low end so today was a surprise. I don’t think my T3 has ever been this high but I don’t feel better for it sadly.
Thank you....just recovering from cataract surgery so reluctantly following strict instructions to rest!!
If your T3 is high because of a failing thyroid, as evidenced by previous low labs, you won't feel much improvement.....that's just how this works.
The high FT3 is probably not being seen by the endo for what it represents....hypothyroidism. Explained above.
Your replacement dose is too low....as it increases TSH and the Frees should edge towards euthyroid because the body will no longer have to work overtime to maintain enough T3 to keep the body functioning.
I think it's more the amount of meds rather than the type that is the problem and I'm guessing the endo isn't looking there
The ducks all need to be calmly lined up in a row...right now they are just flapping their wings and quacking!!
Hope that makes sense.
No sign yet of March results....sorry!
Take care
Test results
Latest blood results
Update on blood results on post taking carbimazole
Blood Test Results.....weird? On T3 only
results 
