I am post thyroidectomy now 7 months. I am on 105mgs of NDT. I have been on this dose for 8 weeks and this was my blood result
TSH 0.12 range 0.40-4.0
T4 8.5. range 12-22
T3 2.7 range 2.5-6.0
I had been feeling ok on this dose and then 10 days ago I went to 120mgs of ndt. 2 grains. I split my dose over the day as I felt that 120mgs was too much to take at once. I often feel the NDT rushing into my body and filling me up.
The reason I am writing is that I am feeling fatigue. It’s my only symptom. I am needing to sleep 12 hours a day. I just feel very tired. I struggle to get out of bed but as the day wears on I feel better not worse. I can’t work out if I am under medicated or over medicated. I have no tremor, heart palps or sweating. Just this fatigue that gets better as the day goes by.
Prior to this blood test my blood was
TSH 0.04. Range 0.40-4.0
T4 9.8. Range 12-22
T3 2.8. Range 2.5-6.0
My dr is not concerned by the low T4 and is happy with the T3 as he believes my T3 is around 3.1 based on my blood results from 2010. Prior blood levels to having Graves’ disease.
I’m not sure what to do? Take a higher dose of NDT or ask for some T3 only medication to bump up my T3. I pay privately for my NDT. I’m scared to see my dr as at my last appt he was happy for me to be on 90mgs of NDT but I felt a terrible dip in my energy levels and again I could feel the NDT filling up my body. I had to debate a good argument for going on to 105mgs of NDT and I did get that script.
On monotherapy of levo my t4 was 16.9 range 12-22 and again my t3 was 2.7 and I felt like death. NDT is definitely better for me.
I take all the vitamins. 1,000 b12 a day. Selenium, zinc, 1200mgs folate, 4,000iu vitamin d.
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NIKEGIRL
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No you are understanding this correctly. I increased my dose from 105mgs to 120mgs in the hopes of finding optimal and by that I mean a bit higher T4 and T3 levels.
Well ... you sounded ok before , and now you're not .. so what does that tell you about where your optimal is .
if you were doing ok on 105mcg , then ignore the numbers .... people have been 'finding their optimal' on NDT by going entirely by how they feel for decades before blood tests came along to confuse the issue in the 1960's
it sounds like you are in danger of chasing a theoretical ideal of what you think your fT3 'should be' , when in practice you sounded very well recently before you upped the dose .
Don't change dose based on numbers when you feel well. Bloods give you a clue to which way to go when you don't feel well , but they shouldn't be dictating your decisions when you do feel ok.
(and yes , everyone is going to tell you 'your fT3 is low' .. it is ... but it was presumably this low a few weeks ago when you seemed to be feeling very well on 105mcg .. so if it wasn't a problem then, why would it be now ? )
Why not just go back to 105 for few weeks and see if you feel better again ?
yes that is the danger I run and I admit I am chasing better t3. I struggle to believe it could be only 2.7. And yes I have to decide to stick the 120mgs out for another 10 days or go back to 105mgs and see if that is my sweet spot. I appreciate u grounding me
Could be low morning cortisol causing the fatigue. And, as the cortisol level rises during the day, the fatigue diminishes. Have you had an 8 am cortisol blood test?
As I suggested above you need more T3! Have another look at my reply.
It's possibly hard only because you're feeling a bit overwhelmed by the situation and feel unable to join up the relevant dots which give a general understanding of what's going on...so missing something important.
Been there,...
I'm one of a relatively small cohort of people who need high dose T3-only to function and have a fair knowledge of how it works....having learning the hard way, by trial and error!
Medics failed to help me which is why I had to read and learn
When we take thyroid hormones we don't " top up" the level we replace it with an exogenous dose adequate to alleviate symptoms
Increasing NDT to 120mg has provided 18mcg T3 plus 78mcg T4...... a small T3 dose considering your low lab FT3 level.
Your doctor is probably not too concerned about FT4 levels because they are being skewed by the presence of T3 in the NDT, which naturally lowers T4 levels.
Your body has recognised the increase but still needs more...the fatigue you are feeling is a plea for more!
It happens!
There is no quick fix it's a long slow journey.
Your FT3 level should be based on what makes you feel well not on an historic reading....your body has changed since then.
Listen to your body it will tell you when something is wrong...and it's doing that loud and clear right now!
I would add some T3 starting with maybe 5mcg, wait a couple of weeks, see how you feel ( possibly not initially great!) then add another 5mcg
Don't expect an instant benefit.
You can increase like that until symptoms improve and there are no signs of overmedication.
We are all different with different dose requirements ....it takes time to work that out.
DD so well explained. Thank you. Now if all the Endo's would understand it as well as yourself we would all be happier thyroid patients. What's so hard to understand is that unfortunately more and more people are suffering with thyroid ailments and yet Dr's still don't get it.We need Endo's that think out of the Box. And are Good Listener's and don't dose by labs only. Symptoms are most telling. Labs are just a snapshot of the moment .
“My dr is not concerned by the low T4 and is happy with the T3 as he believes my T3 is around 3.1 based on my blood results from 2010. Prior blood levels to having Graves’ disease.”
What were your 2010 TSH & FT4 levels when your FT3 was “normal” prior to Graves? Presumably they were your normal too? If Doctor striving to match them or the FT4 too? If they are the bench mark level surely doctor can’t ignore FT4 level.
that is a valid point. No information was given to me about tsh or t4 just t3 because I challenged the 2.8 t3 level 8 weeks ago when I did my first round of NDT at 90mgs and I wanted 105mgs which I ultimately got because I called my dr up for writing out my new NDT prescription for 90mgs before he even saw me and talked to me about how I felt. I told my de to his face that this was a dictatorship and not a democracy because he had made this decision prior to talking to me and that is the truth. I feel strongly that it’s not ok to make a decision in medication doses prior to talking with me. I left his office and had a breakdown in my car. Yes I got what I wanted which was 105mg but it was the means as to how o secured that dose increase that upset me.
Something to press on. Had the FT4 been so low on 2010 it would / should have been treated, so it’s not a fair comparison to say your FT3 is same therefore you must be well….
My thinking is the same as SlowDragon …. add some Levo to your NDT. I had to this also to raise FT4 in line with FT3 levels. I also function well with levels middling in range and would never take them up high.
Your FT4 is low and you have a feeling of "NDT filling up my body" suggesting you are finding T3 (in NDT) difficult to deal with. Are you split dosing that NDT?
when my t4 was 16.9 range 12-22 and my t3 was 2.7 range 2.5-6.0 I was on monotheraphy and I felt like death. Couldn’t get out of bed and would lose days where I could hear everything around me but couldn’t move so it was like being drugged. This was on 150mcg of levothyroxine alone monotherapy so after 13 weeks like that I went on to 90mgs of NDT. No one has been able to tell me why I feel the rushing feeling in my body when I take my NDT .
You are under medicated. That, your previous thyroid issues and then your op will all have taxed the adrenals making them super sensitive.
The ‘rush’ isn’t unusual. It just means meds involving T3 have to be introduced in lower and slower amounts. I had to split dose three times daily for about a year. Some people have to split dose long term but NDT is thought gentler than synthetics due to the hormones being attached to thyroglobulin and I now manage to take daily dose all in one go.
There is a subset of people who simply can’t take Levo-mono therapy (myself included). However, Levo added to NDT works very differently to Levo mono-therapy as the little amount of T3 up-regulates the deiodinase action to encourage improved conversion. Hence, many need less total hormone than when on mono T4.
Taking thyroid meds shouldn’t be an endurance but most need their levels to be at least within bottom of range or higher to regain wellbeing. If this were me I’d reduce back to 105mgs NDT, add 25mcg Levo that should help both T4 & T3 levels raise, and retest in 8 weeks.
when my t4 was 16.9 range 12-22 and my t3 was 2.7 range 2.5-6.0 I was on monotheraphy and I felt like death.
Your T4 to T3 conversion is impaired so FT3 is low
And you were not tolerating T4 well
You need T3 but adding it has become the hurdle ...
Are you supporting thyroid function/ conversion by optimising vit D, vit B12, folate and ferritin?
We've all agreed that you are undermedicated but what do you need to do to overcome this.
Adding more T4 clearly isn't going to produce much T3 and previously left you feeling " like death".
So, consider how your body has been struggling with low T3 levels for some time. It is tired!
Yet the introduction of more NDT ( with T3 content) causes a rushing feeling....which is understandably concerning you.
Why?
The chances are that after prolonged T3 deficiency the introduction of T3 at anything but tiny amounts will cause it to react ( rush if you like).
It's similar to putting high octane racing car fuel into a run down old Mini.....the Mini can't function! It needs less powerful fuel....
Or, in your situation, your tired body knows it is short of T3 but when more is introduced it makes a desperate grab for it ( the rush) but it soon realises the strength isn't suitable so falls back into it's symptomatic stage.... which is basically a cry for more hormone/T3... but added slowly so as not to overpower your system
This happens when doses are increased. Sometimes a slight improvement is briefly felt before feeling rubbish again!
You are going to have to introduce any extra T3 as quite specifically only a few crumbs at a time until the body begins to respond in a calmer way....it will take time.
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