Increasing NDT dose

[Rosebud1955]

I’m in deed of advice once more. I was advised by Endo to increase my dose of NDT from 75 mg Efra but after several attempts, I failed. I was taking 75 mg + 25 mcg Synthroid every morning. Not feelingg100% but functioning. He suggested I take 60 mg +25 mcg Synthroid in the morning and another 30 mg Erfa in the late evening. I tried several times but did not tolerate the evening dose. I decided to take all at once in the mornings. Didn’t experience the dizzy feeling when taken all at once but feeling nauseous and overheating. I’m now on day 5 and is now experiencing itching all over my body plus strange pains on different areas of my arms (burning pains, numbing pain in my toes) I’m generally feeling unwell. BP ranging (116-125 /68-75.) Pulse 66-72) Nothing has changed in my daily routine other than the change of dose.

I’m tempered to go back to my previous dose but I was definitely under medicated on the lower dose. (fatigue, dry skin and heavy feeling in my body from hips to legs) difficulty climbing the stairs, felt like I was hit by a ton of bricks. My last labs were done in November 2023. Due for labs in May.

My question is: should I just persevere in hopes that the new dose will settle in? Or should I go back to the old dose? Although the Endo is flexible I feel like I’m on my own. He just listens but does not offer much support. I think he’s now fed up with me and leaves me to do what ever I want. I have other chronic health issues and don’t always have the mental strength to juggle the doses.

I’m now mentally drained and feel like I’m fighting a lonely battle. I would really appreciate some guidance/advice from all you lovely people. I’m truly tired and frustrated and loosing the battle.mit has been 6 years since my thyroidectomy and have never felt well since the surgery.

Thank you all for any help you’re able to offer.

[pennyannie]

Hey there again :

Just thinking out loud -

of the treatment options you have tried which one do you think worked best for you ?

I remember you were on a T3/T4 combo, presume you had already tried T4 monotherapy and now trialling NDT :

Do you have any recent results and ranges for ferritin, folate, B12 and vitamin D as these core strength vitamins and minerals all need to be maintained ay optimal levels for any of th above treatment options to work well.

PPI are not a good so glad you have dropped these and now taking ACV - I take just around teaspoon in a full glass of warm water around half an hour before I eat my main meal of the day containing protein which needs a bit of help breaking down in my stomach.

Did you think about taking an adrenal glandular ?

I know I feel much more able with them and consider it a necessity for me.

[Rosebud1955 in reply to pennyannie]

hello Penny:

Thanks for taking the time to reply. Yes, I tried Levo mono therapy but it failed because of my Endo. Weeks after my thyroidectomy my FT4 was at the top of the range while my Ft3 was way below range. That’s after testing four hours after my levo dose (as instructed by the uneducated Endo) I didn’t know any better at that time and trusted him because he seemed like a nice man, was I ever wrong! He couldn’t figure out that I had a conversion problem with an under range Ft3 and top of the range FT4. Once I joined this group, I began to challenge him while asking for what I wanted. He must have felt some guilt so gave me everything I asked for. (too little too late) I have never felt well since then. So, I tried Levo+ cytomel but even 5mg Cytomel gave me bad symptoms. So I asked for NDT and he agreed to that but had not a clue what dose I needed. I finally figured it out with help from this group. So here I am now, taking 75mg Erfa +25 levo. I feel a lot better and have enough energy to survive from day to day. I tried several times to add 15mg Erfa but not able to tolerate the extra 15mg. I’m wondering if I should add an extra 12.5 of levo. It seems as if my body will not accept any more T3 from the NDT. Does that make any sense to you? I was even thinking that I might try 60 Erfa + 50 levo. So confusing at times and I’m afraid of going back to the dark days. I did try ashwaganda as suggested by a naturopathic doctor, but I stopped taking it as I learned that it might not be a good idea. I’m so lost!!!

So these are my most recent labs from October 2022. I’m due again in May. Tsh: 0.01, (0.32-4.00). Ft4: 12, (9-19). Ft3: 4.6 (2.6-5.8). Ferritin: 194. (15-272). Vit.D: 114.1. (75-250) B12: 1044. (138-652) Folate not tested but I take Thorne B Complex which has in 400 folate. I did supplement sublingual B 12 but I stopped taking when I saw the high B12.

I feel that I’m doing everything I can do but no real improvement. I have no faith in doctors and want to do it on my own with help from this forum. I truly don’t know what would have happened to me if I didn’t find this wonderful group.

Thanks to everyone, you’re saving lives!!!

[pennyannie in reply to Rosebud1955]

Hey there :

Your ferritin is a bit high - this could be because of inflammation within the body - do you have a CRP reading there and yes your B12 way over - so drop this supplements and revisit in a couple of months and see where your B12 have levelled off to and you likely need to think of supplementing folate separately.

Well, since you have all the options to hand you can adjust the dose as you wish.

There are people adding T4 to NDT as they feel the NDT too powerful for them :

Just as there are people adding a little 3 to their NDT as they prefer a slightly higher ratio of T3 to T4.

I've never tried as I feel so much better on NDT I've not wanted to loose what I've found - does that even make any sense ?

Everyone's unique ratio of T3 and T4 is for them to find - it can ve time consuming and a challenge but since you have all the options to hand you know best what suits you - so all you can do is try and see how you feel s all we all went is to feel better irrespective of what the blood test may say 6-8 weeks down the road.

[Hypopotamus]

What about trying 60mg of ERFA with 50mg of Syndroid if the doctor thinks that you were under-medicated on 25mg of Syndroid? I currently do well on 60mg of Thyroid S with 50mg of Levothyroxine.

[Rosebud1955 in reply to Hypopotamus]

OMG!!! I just replied to Penny and asked her the very same thing. Yes, I will try 60 Erfa + 50 levo. I get enough levo with each prescription to be able to do just that. This Endo does not use his brain, I only use him to order labs and my yearly ultrasound as I had thyroidectomy due to cancer. I think I would do better with less T3. My T4 is probably too low for me. Will start that tomorrow! Thanks!!