sorry to post again with same questions, but I’m seeing the endocrinologist tomorrow and really want to be as knowledgeable as possible.
Medichecks results 28-3-19
Free T3 4.9 pmo/L (3.1-6.8)
TSH 0.186 mlU/L (0.27-4.2)
Free T4 21.7 pmol/L (12.22)
Reverse T3 25 ng/dL (10-24)
FT3:rT3 12.84 (>15)
Ferritin 65.5 ug/L (13-150)
Folate 17.56 ug\L (>3.89)
B12-active 67 pmol/L (37.5-188)
D 58.7 nmol/L (50-175)
TGAb 11.2 kU/L (<115)
TPO Ab <9 kU/L (<34)
My Graves antibodies weren’t measured but were >40 (<1.1) in January 2019. I take 150 mcg levothyroxine and been feeling awful - a mix of hypo and hyper symptoms. Plus I have TED (thyroid eye disease) and this has really flared up since this current episode of feeling dreadful.
I am Looking to change to NDT but also address any vitamin and/or mineral issues. On better days I’m able to do some reading about how to help myself but mostly I’m just struggling and unable to do much at all. It’s been like this since August 2018. So another question is can I get some help with how to appropriately supplement? Who would I go to - a naturopath? Nutritionist ? Any advise most appreciated.
Thanking you all in advance ... this forum is so tremendously helpful, supportive and reassuring.🙏
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B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
SlowDragon. Thank you so much. When I had the bloods done I had stopped taking any supplements. I was taking immune support ultra - Vitabiotics and omega 3 fish oil only. Since blood tests, I bought DLUX+ vitamin D+K2 oral spray only and have been taking it daily.
Re meds, I’ll discuss tomorrow with endo best options. Previously he said no to my GP about a trail of T3 and Gave no reason. I’ve read quite a bit about NDT and know the endocrinologist will prescribe it on a private basis. Is there anything in my results to suggest one or the other, or is it as I suspect, trail and error, what suits one may not suit another?
I’ll look at all the links you’ve provided. As always so so helpful. And update after my appointment tomorrow. Thank you again 🙏. I wish you well
Is this an NHS endo? If so, he’s a hypocrite if he’ll give you a private prescription for NDT but refuse you an NHS trial of T3. By giving you a private prescription for NDT he’s acknowledging you need some form of combination therapy - as SlowDragon notes from your blood results. 🤸🏿♀️🥛
Worth a try. Not sure how he can justify not giving it to you if he thinks NDT which contains T4 and T3 will benefit you. He’s talking out of both sides of his mouth! Good luck. 🤸🏿♀️🥛
The endocrinologist decided to prescribe a trial of T3.... he was a bit dismissive of my medichecks bloods especially the significance of rT3 but has said let’s see if a combination of T3/T4 helps. Does feel like a small victory. 🙏👊
Hi. Yes my eyes feel sore and scratchy. They water a lot. When I put drops in, it helps but that increases the feeling of ‘wayerlogging’ in my head, cheeks, nose. I use an eye mask from the freezer most days. It soothes but only really while I’m using it. I have on-off double vision all day and pain when I move my eyes. Since my flare up (August 2018) I’ve had a headache that doesNot respond to painkillers - it’s appearently due to ‘congestion’. I’m also very dizzy. Especially when I walk and feel like I’m on a boat. All in all not good. I am going back to the ophthalmologist in June but that feels quite some time away.
I got very bad dry eyes, which I don't know if it's from my meds or from something else, awful, I had to switch to ndt from tirosint as I was getting bad heartburn and stomach burning on it, and they got worse
Well done for getting a trial of T3 - it is a small victory, let's hope it gives you some relief of symptoms.
I did try T3 self sourcing as refused a trial - I knew I felt better on it, but couldn't sustain the same supplier, the second purchase giving me massive headaches.
I am now on NDT, self sourcing and am doing ok -
It is all trial and error, especially when DIY but so glad that you've been given an option.
Can I ask what dose you've been given and are you to drop some T4 and what time frame are they looking at for this trial ?
I hope I’m going to remember all I was told today - I will be getting a letter so can correct any errors.....Endocrinologist said to drop Levo from 150 to 125 mcg. I haven’t got the T3 pills yet - going tomorrow to the hospital pharmacy. I think Endo said to take 10 mcg but the pills will need splitting as they are in 20s. To take both T3 and T4 together and first thing in the morning. He has said over a period of 3 months, with blood tests at 6-8 weeks and to contact him with feedback. I have TED (moderate to severe) as well as Graves and endo was not so keen to give prescription for NDT as he said it’s harder to get the dosing right and there’s greater variations between batches. Thyroid stability important for TED - much as it is for just about anything! Endo was pretty ‘sympathetic’ but was dismissive of my vitamin/mineral levels. I’m going to follow those up separately. I wish you well 🙏
I'm sure your recall is pretty much spot one, and as you say there is a letter coming out and a prescription to collect.
I wouldn't be too concerned about his " negative " comments on NDT and/or his "dismissiveness" on your vitamin and minerals, as I read these are areas that are not well covered in modern medicine.
As you say, thyroid stability is essential for everybody whether with or without TED. Sounds like " throwaway comments " not worth spending too much time on.
I've just looked back at your blood tests and your conversion of T4 to T3 is low, coming in at over 4.0. ( 21.7 divided by 4.9 )
Conversion is said to be anywhere between 1/3 - 1/5. but it seems to me most people feel better when their conversion is towards the lower end of this range, at around 3.5 - 4.0
So dropping some T4 and adding T3 will be beneficial.
It will also be easier for the endo to find an optimum dose of T3/T4 as he/she can adjust each hormone independently to find the right balance and conversion for you.
On NDT there is a fixed ratio in the tablet, usually, 38 T4 and 9 T3 - with some people adding extra T3 or T4 in order to find a better balance for themselves.
I think a high reverse T3 is inevitable when having had an overactive thyroid, but it may reduce over time, when lowering the amount of T4 you are taking and thereby reducing overall the T4 in your system.
with my dry eyes? I feel that they got worse on ndt, I don't know why. I keep switching between ndts as I don't feel good on them I'm trying armour now
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