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
Many thanks
Pamela
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McPammy
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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.
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.
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.
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.
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 🍀☘️🍀
All thyroid blood tests should ideally be done as early as possible in morning and fasting. If on NDT make sure to take last dose 12 hours prior to test.
Is this how you did the test?
On NDT you would expect TSH to be considerably lower, certainly under one
FT4 is below range and FT3 far too low
Have you tried increasing the dose?
Your vitamin levels are poor. Ferritin extremely low. GP should do full iron panel, most likely need iron infusion, followed by iron supplements
Folate is also very low. Recommended on here, when having B12 injections to also take daily good quality vitamin B complex, one with folate in not folic acid
Have you been doing this?
B vitamins best taken in the morning after breakfast
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Hi. Yes I went at 9am to hospital for these tests. Needed to do that for cortisol too. I took no medication until I got home. I haven’t been supplementing only B12 loading and 3 month intervals. I’m on gluten free diet now. Waiting also for ceolliec test results back and selenium. My ferritin seems far too low. Not sure why this hadn’t been checked before. I asked for all these tests this week to have a picture to show an Endocrinologist in Oxford soon. I’m hoping he can level things out for me. Cortisol is pretty low too for 9am. It should be around 450-500 I believe at 9am.
I will speak with my GP first thing about the ferritin. Yes it had dropped. I had a crush on eggs during the summer. Every bday I’d eat egg on toast for breakfast. Maybe my body craving it. I’ve stopoed and started gluten free porridge. Maybe I’ll start including eggs again. But need meds to help ferritin now. Maybe that’s why I’m in this state. Maybe thyroid not doing it’s thing properly. That would be maddening if it’s only been ferritin. I’ve just checked and it was 24.7 back in March. I’ve a burning tongue a lot and had it back then too. Maybe thyroid needs iron to help it along. I will get vit D too as don’t want it to drop further. You would have thought my Endocrinologist who is a Prof in Chester would have known about low ferritin causing issues.
Low B12 causes peripheral neuropathy, which is often burning sensations
Your folate is terrible, especially as vegetarian presumably you eat a lot of greenery
Starting on daily vitamin B complex is most urgent to. Igennus Super B complex is good one. Full dose is two tablets per day. Suggest you start with just one after breakfast
I hope you avoid absolutely all soya, including soya lecithin
Soya is a real no no for anyone with thyroid disease
There are a few surprising things on that list, and I eat most of them (not soy) but I'm surprised how little it makes of the bio availability issue and doesn't mention liver etc.
Thank you!!! I’ve now got my Ferrous Fumarate tablets yesterday. You also mentioned my Folate was poor. My result was 5.2 (range above 4). Do you know what level is the optimum for a person suffering with Hashimotos please. I can’t believe my Endo hasn’t picked any of this up after reading the guidelines you kindly sent my on checking vitamin levels for all these 8 months I have been in a desperate situation. I have learnt so much this year for sure. I’ll always make sure my levels are good going forward.
Even today most endocrinologists don't understand we need GOOD vitamin levels
They might, if your lucky, test for deficiencies, but they don't see, that patients do better with optimal levels
Strictly gluten free diet helps, or is absolutely essential for most Hashimoto's patients
Supplementing regularly a good quality daily vitamin B complex, one with folate in not folic acid will help keep all B vitamins in balance. Low B12 extremely common even on full meat eating diet. Even more difficult when not eating meat
Igennus Super B complex or a Jarrow Bright are good makes and popular choice
Remember to stop taking any supplements with biotin in 3-5 days before any blood tests as biotin can falsely affect test results
The four essential vitamins are
Vitamin D - aim for at least 80nmol, but around 100nmol may be better
Folate and B12 towards top of range
Ferritin at least half way in range
Vitamin D and ferritin need regular testing when supplementing as both are toxic in excess
Folate and B12 are water soluble so we just pee out any excess
Selenium supplements can help improve conversion of FT4 to FT3
I’m finding the whole subject very interesting these days. You are extremely informative to say the least. Great links.
I’m on coarse now to getting my vit levels sorted. I don’t know why my vit D levels are so good and have been all year. As I’ve not exposed myself to the sun or taken any supplements ever. At least one is working! I’ll soeak to my GP re the folate too. I’m still weak but able to walk. We went shopping today and my legs were all wobbly so we had to come home early. Maybe it’s the iron deficiency, not sure.
I’ll keep my eye on my levels now going forward for sure.
I’m looking forward to seeing my new Endocrinologist next week to see if he can work out what’s gone wrong. If I have a solution to this puzzle of mine I will sleep better just knowing.
I want to get back to myself that’s all and find a new job.
Many thanks again for all your help. You are truly brilliant!
I just found a post on here from a while back regarding low iron and Levothyroxine intolerance. I could not tolerate Levothyroxine anymore this summer after 11 years on it. Each time I took Levothyroxine I was virtually crippled. I stopped it for one week. It was like a miracle I could walk properly and had all my strength back. I switched to NDT. I’ve got better with still some to go but never understood why I couldn’t take Levothyroxine anymore. Maybe it’s too low iron stores.
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