The past week my legs have been buckling under me. I had my bloods done the other day showing under medicated.
Does anyone on here get weak legs when under medicated please. Today I can hardly stand up let alone walk I’m waiting to speak with GP tomorrow I’m on NDT
TSH 7.15 (0.35-5.50)
T4 6.7 (7.86-14.41)
T3 4.5 (3.7-6.0)
Many thanks
👍
Legs not functioning was nearly always my main prime symptom when inadequately treated.
Your results suggest you are very under medicated
Have you had vitamin levels tested recently too?
Hi. Yes my B12 is now 820 over top end of range as I’ve had loading and one other injection. My vit D is 88 this is not supplemented all natural. My Folate is 6.5 (above 4). My Ferritin was low at 15 I am now on iron medication and have been for 2 weeks. I’m waiting for new Endocrinologist to assess me. I feel like I’m going backwards. I take my medication same time each day 8am with water and don’t eat until 10am. I think there’s not enough T4 in NDT for me.
Thank you
Pam
Your folate needs improving
When on B12 injections it's recommended on here to take good quality daily vitamin B complex. One with folate in not folic acid. 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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Vitamin D might be better around 100nmol. Plus possibly magnesium too
As you have Hashimoto's are you on strictly gluten free diet?
Vitamins need to be optimal for T3 or T4 to work
Obviously low ferritin needs sorting
Have you tried Levothyroxine plus T3, or did you go straight from just Levothyroxine to Efra?
I went from Levo to NDT. I don’t think it’s right for me. I think I need T4 and separate T3. I’m waiting for my Endocrinologist to call me. I ended up on the floor and couldn’t hardly get up I managed to call 999 as I live alone. They didn’t take me in. Said my observations were ok and to call my GP following day. Next day I was so bad. My partner came over , who lives 100 mile round trip away. We struggled to GPs then into hospital for bloods. No change really TSH 7.47 (0.35-5.50). T4 6.7 (7.86-14.41). T3 4.7 (3.7-6.0)
Ferritin improved slightly 21.7 (22-322). Liver function fine. B22 804 above range. Folate 6.1 above 4.
My Endo sent me an email just and said I am under medicated and I cannot collapse with that. I think he may be wrong.
Then maybe there’s another issue I just don’t know about yet.
Thank you!!
Are you on strictly gluten free diet?
It's very, very common to need to be absolutely strictly gluten free even if you have tested negative for coeliac
Getting all four vitamins optimal is essential
Yes, strict gluten free and have been for a few months now. Also had celiac tests which was ok.
Thanks
That's good your gluten free
Getting vitamins optimal is essential
I am prescribed T3, and have found it excellent but needs extremely fine tuning. I take as split dose every 8 hours. More on my profile.
I did try both NDT and T3 fifteen years ago. Couldn't tolerate either as (unbeknownst to me or medics back then) I had gluten intolerance and vitamin deficiencies
I’ve been advised last night by my new Endocrinologist that NDT is not physiological and that I should be on T3 2/3 times a day with T4 also.
My next appointment is on 8 Jan 19. In the meantime he said to take 25mcg Levo with my NDT.
Thank you!
How long have you been on NDT. You must be on a tiny dose. I would be inclined to increase asap. Is you GP supportive of your NDT? You TSh much too high. hypo causes muscle weakness.
Hi yes I think it’s a small dose. 60mg of NDT. I’ve been on it 4 months now. I was only on 75mcg Levothyroxine before that. I’ve had to keep reducing from 125mcg Levothyroxine over a few years. I had to stop Levothyroxine this year after 11 years as it was making me so ill. I tried to increase the NDT about 6 weeks ago by one quarter. After a short while my legs gave way completely and I ended up in A&E my T3 was over at 6.1. I had to reduce back down to the one tablet of NDT. The slightest increase or decrease seems to effect my hip and legs strength so much so I can’t hardly walk. Either way I’m in trouble. All too sensitive it would seem.
Thank you !!
You need a rise in your medication. However as you are on NDT the emphasis should be more on your symptoms and relief of as the blood tests were introduced along with levothyroxine (T4 alone) whereas you are taking T4,T3,T2,T1 and calcitonin which is the very original thyroid hormone replacement. The aim is still to have a TSH of 1.
When on NDT, we can increase by 1/4 tablet every two weeks, always taking into account symptoms and relief of. We don't need to rely on blood tests particularly. Pulse and temp can be guides.
The doctor in the following link (he is now deceased) only took one blood test for the initital diagnosis and thereafter it was all about how the patient's symptoms were relieved. He never prescribed levothyroxine - only NDT or T3 for thyroid hormone resistant patients, as he stated it was through payments to doctors by Big Pharma that levo/blood tests became No.1 prescriptions.
web.archive.org/web/2010103...
Thank you. I will read this link. I have tried to increase NDT by a quarter about 6 weeks ago. In a very short time like 1 week, my T3 went too high. My legs went completely I ended up in A&E. Any slight change and I’m in trouble. This only started this year before that for 11 years on Levo I never had this trouble until this year. Then I changed from Levothyroxine to NDT 4 months ago. Now I’m in trouble once again.
Something has happened but I don’t know what.
Thank you 👍
mcpammy.Can you give us a bit more of a history, all your current symptoms, temp and pulse from first thing on a morning. This needs some thought and a bit more information. When you legs give way is it possible you are fainting/ having postural drop.Perhaps get your GP to test sitting and standing BP.If you do then this maybe adrenal and you may need something like NAX to help you use the thyroid hormones.Has your blood been done recently including ferretin, folate vitamin D and B12 if not ask your GP to do these. If done please post.
All vitamins have been tested recently. All are good except ferritin. I’m now on iron tablets fromGP. Not fainting feeling. Weakness mainly in legs and hips. Headaches. Generally feeling crap. I have been tested for Addison’s and it’s not that as SST was normal. I have had multiple low cortisol results all year but not at 9am.
I will speak to my GP in the morning. It’s a little worrying as I live alone I will get through though.
Thank you very much 👍
Could you give us the actual vitamin readings and the ranges? If you haven't been given them then ask the reception it's- they can't refuse so speak to the office manager if they do.
Over doctors say they are good because they are in range and it's where in the range that matters so I'm suspecting some of yours or even all may not be optimal. This is also the main reason why you can't raise your dose. Can you remember or can you post your last results when taking Levo. I'm not on NDT 1.75 when I used to be on 100/125 Levo and I know you can't really compare as different brands etc can vary slightly so just wondering what your Levo doseresults were and whether they were correct for you. That may gives us an idea where you would expect your NDT results to be. But posting vitamin results most important as I've a feeling that may well be your issue.
My vitamins as requested:
B12 804 (150-750)
Folate 6.1 (above 4)
Ferritin 21.7 (22-323)
Vit D 88 (above 50)
I’m on tablets for my ferritin for past 2 weeks. It was only 15. I’m in B12 injections. My vit D is natural not supplemented or been in sun.
I collapsed on Sunday evening I couldn’t get off the floor hardly. I called 999. Phone luckily was near me. I’m waiting to speak with my new Endocrinologist. He emailed me today saying under medicated would not make me collapse??!!
Many thanks
Pam
Folate and ferritin are both much too low
Ferritin needs to be at least at 70
Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. 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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
You will see hundreds of posts on here about importance of good levels of folate, B12, ferritin and vitamin D
Vitamins drop when under medicated
Hi. I’m onto it. Taking my iron tablets daily. In 2 weeks it’s increased from 15 to 21. Still some way to go!
Folate MUST be improved too
Are you now supplementing a good quality daily vitamin B complex? One with folate in not folic acid
Eg Igennus Super B or Jarrow B-right
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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Ferritin, eating liver or liver pate once a week, plus other iron rich foods, plus taking vitamin C or orange juice alongside, all should help improve ferritin
Yes taking vitamins with my breakfast and fresh orange.
It’ll take a while but I’m on the right road I believe now.
Thank you once again !!!
Sometimes it is the fillers/binders in some thyroid hormones which affect us rather than the hormones themselves.
It is a worry for you, no doubt about that. We may have a higher T3 as the blood tests were introduced along with T4 only (levo) so if we take a product which contains T3 and also T4 which also converts to T3, the T3 may show to be higher.
The fact that your legs buckled obviously shows something isn't working properly.
One of our deceased Advisers only prescribed NDT or T3 for thyroid hormone reistant patient. He only took one blood test for the initital diagnosis and thereafter it was all about symptom-relief by gradual increases.
It is scary when strange things are happening, especially when we live alone so I hope you'll feel better soon.
McPammy, leg weakness has always been an issue for me too, regardless of which type of medication (NDT / levo / whatever). Whether slightly under-medicated or slightly high T3, my legs quickly weaken and standing is at best hard work and sometimes virtually impossible. I found taking a small dose (i.e. 25mcg max) of levo alongside the NDT helps a lot with this. But you may also need to experiment with the various brands of levo, as I find I'm intolerant to most even at that low dose.
Hello RedApple, I was thinking the exact same thing. I do have some Levothyroxine 25mcg and my best brand too. I think I need a boost of T4. I’m so glad to hear from you. It’s not often I hear from people with the same symptoms. I’m relieved you have told me about your symptoms. I feel like I’m going round in circles with my symptoms this year. No Dr seems to be able to help me. All along I’ve thought it was my thyroid but the Endocrinologist said it’s neurological. Neurologist said they found nothing wrong with me. I’m sorry you’ve been through this. I just need to get off this merry go round too. I’ll speak with my new Endocrinologist secretary in the morning as I don’t want to do anything I shouldn’t. Although I definitely think I need T4 and quickly
Thank you 👍😀
Have you ever found out why your legs get so weak. I’ve been Hashi for over 11 years now and only this year my legs are so effected.
Thanks.
With hindsight, I've had this symptom on and off for several years before I ever actually got diagnosed with autoimmune thyroid disease. Too low a level of T4 definitely is a cause though for me. Hope you find your solution soon 
feeling under medicated/hypo
Levo being reduced, but feeling under medicated.
Under medicated
Over Medicated & Under Medicated....and Tinnitus 
