Hi. I’ve had my first series of blood test results after starting NDT 3.5 months ago. Any comments would be appreciated I’m still having issues with weakness especially in the afternoon part of the day and evening
T4 6.6 (7.86-14.41)
TSH 3.01 (0.35-5.50)
T3 4.7 (3.7-6.0)
Cortisol 203 (155-607)
Ferritin 15.9 (22-322)
Vit D 83.3 (above 50) not been in sun since April as too unwell
Vit B 525 (150-750) on loading in July now 3 monthly
Folate 5.2 (above 4)
Peroxidise Ab 28 (0.1-9)
Comments from hospital all normal except ferritin
I’m going to see an Endocrinologist in Dec with these results as I don’t understand what has happened to me this year I had to stop Levothyroxine and change to the only offered alternative NDT privately
In terms of your thyroid results, it's straightforward in that you appear to be under-medicated, and have tested positive for Hashimoto's. What dose of NDT are you taking?
Thank you! I was on 75mcg Levothyroxine. Now on 1 grain 60MG NDT. I did up my NDT slightly by a quarter of a grain but after a short while I collapsed with complete weakness and sent to hospital. The only thing that showed up on my bloods was my TSH was high at 6.1 in the afternoon. So I had to drop the extra quarter then. My GP wrote to my Endocrinologist at the time for help on how to administer but he got no reply. I’m thinking maybe low ferritin is not helping me.
"The only thing that showed up on my bloods was my TSH was high at 6.1 in the afternoon. So I had to drop the extra quarter then."
That doesn't make sense. Who said you should reduce your NDT by 1/4?
When TSH is high, and yours would be over range at 6.1, then you are undermedicated and you increase your thyroid hormone replacement not reduce it.
Sorry my error I meant my T3 was high not TSH. Sorry.
I’m not good today. Bit wobbly to say the least. X
Hi McPammy. Could you please post what your levels and ranges were that made you want to start NDT?
It is no wonder that you don't feel well. Your FT4 is SEVERELY BELOW range! T4 6.6 (7.86-14.41)! Yikes! That's very, very low! However, you have no problem converting T4 into T3. It's a miracle that your FT3 is at such a good level compared to your FT4. Your FT3 is at 43% of range, T3 4.7 (3.7-6.0).
This makes complete sense that adding more NDT made your FT3 get too high. Why? Because NDT contains a fixed amount of both T4 and T3. The problem with adding more NDT (as you experienced) is that by adding more it made your FT3 get way too high. You need to add ONLY more T4, not T3. By adding more T4, your FT4 will increase, and because you have no conversation problem, your FT3 will automatically increase.
Because your FT3 level is currently very good in comparison to your very bad FT4 level, it's possible that by adding more T4 to your NDT, you will have to stop taking the NDT and switch over to straight T4. Why? Because you are going to have to add a hefty level of T4 to your NDT to get your FT4 up to optimal range. By doing so, because your FT3 is currently where it's at while your FT4 is currently horrible, your FT3 might become too high when you add all that T4. Too high FT3 will give you problems, just like too low FT3. Same goes for FT4.
Does your Erfa contain only 38 mcg T4 plus 9.5 mcg T3 like most other NDT brands? If that's the case, it's no wonder that your FT4 is so low. NDT companies try to promote their product as "being equivalent" to taking X mcg T4. Sorry, but it's not equivalent and I call this bunk. Your and other people's blood results show that it can't be! Taking T4 is T4, and taking T3 is T3. Not everyone needs both T3 and T4, not to mention that each person has their own unique levels before and after starting meds. You went from 75 mcg T4 down to 38 (or whatever is in Erfa) T4. It's obvious from your blood results that that is the problem and that 1 grain of Erfa NDT is not equivalent to 100 mcg T4, or whatever it is that they claim (I believe that Armour makes that bunky claim.).
To fix your very poor FT4 level, you'll have to add only T4.
I agree that I need more T4 for sure. I’m not sure what to do as I had to stop Levothyroxine. It’s a long story! My previous results with T3 are:
T4 13.6 (7.86-14.41)
TSH 0.22 (0.35-5.50)
T3 3.90 (3.70-6.0)
I only have these T3 results as in Chester they won’t do them if you’re on T4 alone normally.
I collapsed at this point. My cortisol was low at 68 (155-650) and my ACTH was 0.5 (2-11)
Thank you!!!! 👍
So why does a normal functioning thyroid make T3 and T4 if some of us don’t need T3. I think current quality research does not back that statement up. This person is under medicated and needs to increase their dose of NDT in gradual 1/4 grain increments until a euthyroid state is achieved and the person feels well again.
In her first labs her T4 was too low. My response was based on that. At that time, adding more T4 would increase conversation of T3. In their latest labs, it’s the opposite. T4 is nearing up mer range, but T3 is very low.
T4 is converted into T3. T3 is the active hormone. T4 is not. Everyone needs T3 to function and feel well. Everyone does not need T4. Some people choose T3 only therapy, rendering their T4 nearly nonexistent.
In her latest lab ms she has too low T3. The problem with adding more NDT for someone like her is that is that it is a fixed amount of T4 and T3. She does not need mores T4. In her case case, adding more NDT at this stage will increase T4 too much, while the T3 well still be too low. In order to get their T3 up where it should be by taking enough NDT, their T4 would be over range. They need to add T3 only, not the T4 and T3 of NDT.
Can you add T3 liothyronine instead of NDT.
Have you had a DIO2 gene test to see if you have a faulty gene. If positive result this would mean you are a poor converter T4 to Active T3. And this is also good evidence for Drs.
We all need T3 as it’s the only active hormone. When we take T4 Levothyroxine it sits in your body waiting to be converted to The active T3. Without T3 you’ll be considerably comprised.
I’m now on T3 liothyronine twice a day along with Levothyroxine. I have a condition that I do not convert very well T4 to active T3.
I’m now recovered by adding T3 medication.
That is great news so pleased you are getting better with the help of more T3. I am a poor converter too and found NDT so much better than T4 on which I felt truly dreadful. I did write a long response to shooting stars on the merits of T3/combination treatment but it suddenly disappeared into the ether 😬 I haven’t the inclination to try and replicate it now, especially as you have made such great progress since the post (which is a few months back now) which is what really matters and I doubt it would have much impact anyway.
It is so good to start feeling well again after suffering the hells of this disorder. I am delighted for you 😎
Thank you. Of course no need to rewrite your old post reply.
It took 15 months of going through real hell. I went private and was diagnosed as very poor converting T4 to T3. Thank the lord for this forum otherwise I’d still be really bad.
Got T3 privately from Germany
15 months on the NHS has finally agreed to supply but under duress. A particular Dr let me down badly. Sending me to cardiologists and neurologists. Wasting time and money for NHS and myself. I lost my dream contract job with Rolls-Royce. I’m just beginning to enjoy life again. For 11 years I was only on Levothyroxine T4. I had many situations when I’d become very weak suddenly. It’d happen in work or out walking my dogs. No one knew what it was. Now I know it was the lack of T3 and why as I had the DIO2 gene test which confirmed I am a very poor converter. My sister had similar symptoms now she’s having the gene test too
Once again if it wasn’t for Thyroid UK I’d know none of this and still be bad.
I hope you are ok presently and that you’re enjoying the summer months. Best of wishes to you 👍😀
I am so sorry about your job. I had to give up my chosen career as I became unable to cope
It was very technical and a dulled T4 only brain and body wrecked it all, but I changed to something I really love that I have had success in.
Well done for getting the T3 on the NHS, we should have been offered it not been shoved on an inappropriate therapy and just left to suffer the consequences. How awful for you to get that weakness I passed out a few times before diagnosis once causing me to have a really nasty cycling accident as I slumped on to the road and the cyclist behind me ran over me. It is no joking matter. I have doggies too beautiful sighthounds I love em to bits! Glad you have moved on to positive times again 👍🏼
Oh gosh how awful about your cycling accident. That’s terrible.
I’m happy for you for finding another working life that has brought you some success. Well done you!!
I’m actually thinking of going formal against the NHS for negligence. Especially a particular Dr that refused a trial of T3 medication and then sent me to neurology which meant a 4 month waiting time. Plenty more wrong stuff but I won’t bore you with it all.
Main thing is we are or nearer to getting better. 👍😀
Yes 😎 I am ok now just have a dish in my thigh from the huge haematoma unsightly but that’s all...but I do admire your pluck to take them on, really that is what’s needed to put the fear of god into them and to force them treat people properly. Good luck with it 🍀☘️🍀