What should I do about these thyroid levels?

I have been on ndt since November and just had my first blood tests. I am up to taking 3 grains per day. Palps have improved alot, hair has stopped falling out in handfuls, fatigue, anxiety and body pain is gone. The only problem I still deal with is my body temp fluctuating from 94.4 thru 98.8. Even though i'm feeling so much better, my numbers seem a bit off. I just need a bit of advice about what I should do from here. My doc wants me back on synthroid, but I just can't do that. I have been symptomatic and sick on it for 8 years. Here is my current levels T4 is 0.99 ng/dl (range 0.71-1.85), T3 is 3.57 pg/mL (range 1.45-3.48) TSH is 0.011 u(iU)/mL (range 0.350-4.940. Doc does not test Reverse T3, and I haven't had my tests done for Vit D and B12, but have been on Rx of 50,000 units D per week and B12 and Iron supplements also. Have not had any vitamin and mineral levels checked yet, but will be soon.

31 Replies

  • That is a huge improvement in just 2 months

    As my husband will tell anyone it takes at least a year on full replacement dose of NDT to become really well

    Tell your doctor to stick his synthyroid where the sun does not shine

    NDT is the correct med for you

  • I think I still have a long way to go, reallyfedup123. But I was so sick for so long with so many smyptoms of both hyper and hypothyroid, that any improvement was better than none. It's like you are ill for so long that you adapt to the only way of life that you can. But when the slightest thing improves, it's amazing to think that maybe you can get back to the way you were before...or as close to it as possible.

  • My husband was undiagnosed for 6 yrs after thyroidectomy went right into myxodeama madness then at least 8 yrs going nowhere on levo

    a few more on t4 and t3 and then just t3 before he switched to NDT and recovered

  • Of all the doctors i've been to since RAI, not one of them has ever considered any other medication change. It's like they only had one plan...synthroid or nothing. So glad your husband finally recovered. It's such a battle just to get anyone to help us.

  • You might need a couple more increases and I would be apt to increase meds by 1/4 each time as sometimes that's all you may need to rid yourself of all symptoms - some people need higher doses.

    I would not take too much notice of blood tests, except if you are quite unwell or clearly overdosed. The blood tests were introduced along with levothyroxine so if we take NDT they wont correlate in the same way as levo.


    If we take hormones with T3 in it, our T4 will be low.

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • Hi Hypoplexed

    I started taking NDT just before Christmas and can't believe how different I feel. I was so depressed and fatigued etc and didn't know how I'd cope with the whole turkey thing and relatives. I took the leap like you as my GP just said he was sorry he couldn't help me. I do supplement with Vit D Vit K and B12. I have a higher temperature but it might just be hot flushes. Keep an eye on it or someone on here might advise you as to why it's happening. I too am worried what GP will say but as he was unwilling to help in the first place I have no alternative. I'm wondering when he'll actually call me in for my routine bloods?! I will refuse to go back on Levothyroxine now and will get bloods done privately and get all my help and advice from the lovely people on here (if they don't mind). Please don't give in to your GP (I won't if you won't :) )

  • I debated for the longest time as to whether or not I was going to tell my doc I wasn't taking synthroid anymore, but I figured the worst she could do is refuse to see me anymore. This is my health and I was just sick and tired of being sick and tired, plus all the pain I was in, (diagnosed with fibromyalgia). I just haven't had a life in forever. I want it back, but docs just weren't helping. They can talk till they're blue in the face, but i'm not getting back on that crap they have been killing me with. Wish you the best.

  • I totally understand and agree with you. I've just been diagnosed with Lichen Sclerosus and I think if I hadn't changed my meds beforehand I might have topped myself. I wish you the best too Hypoplexed.

  • KarBon, I'm not familiar with what Lichen Sclerosis is. Is it related to your thyroid issues?

  • Apparently it's also an autoimmune thingy - lovely. It's quite a personal thing as it affects down below. Turns your bits white and can be quite sore. Lichen Planus is when you get it in your mouth, but luckily as yet, that's not on my list of ailments lol. Just been to docs and have to rub steroid cream on area for a while and go back in a few weeks. Apparently it's more common to see it in people with a thyroid problem.

  • Oh ok. I was just curious, because i've never heard of it before. I can uderstand that being a personal subject, but no judgement here. We all have our issues. That's why we are here, for support knowledge education. Thanks for the info.

  • You're welcome. And yes the support here is great, as I've said before it's like a little hug isn't it.

  • Yes it is. It's nice to have others who understand, and can relate to our struggles when no one else will.

  • Hi Karbon,

    Delighted that you are feeling better and survived all the hype of Christmas.

    I too have LS and the cream was not for me. Read recently that coconut oil is getting excellent results for LS.

    It's certainly worth a try and much more natural than steroid cream.

    Only problem for me is, I eat it by the spoonful.

  • I use coconut oil also. I eat it, use it in herbal home remedies, as a hair conditioner,and on skin conditions also. I love the stuff!!

  • Hi Jose651

    I will give the coconut oil a go and see if it helps. Thanks for the advice. Pina Coladas all round :)

  • Oh no KarBon, you can get lp down there too! Lucky me. :-)

    Are you sore too? Everyone asked me a lot about itching but mainly my skin is sore. (Sorry op for the diversion.)

  • Yes very sore sometimes together with the itching. The skin can split too which is painful. Puncturedbicycle I didn't know you could get lp down there too. My mum had it in her mouth, dentist found it. It would be interesting to make a chart that everyone could add their symptoms to, that way we could just fill it in when we get a new condition! Maybe there's just not enough space!!!!

  • Apparently (thanks Dr Google) you can get lp in both places but ls only in the lower ranges. Mine feels like sunburn/chafing/papercut a lot of the time, and as you say my skin split (which is what brought me to the doctor). How many times have I been told I 'probably' had herpes 'but it doesn't look like herpes.' Jesus wept. Took about a year and dozens of pairs of eyes to diagnose. I said no to a second biopsy. I only have so much skin to donate from that area.

    Yes, that symptom chart would take up a lot of space. :-)

  • Hypoplexed, your FT3 is mildly over range so avoid increasing dose. If FT3 is higher on your next test you should consider reducing dose to 2.75 grains. Temperature doesn't always recover after being hypothyroid a long time. The main point of checking temperature is that spikes in temperature can be an indication of overmedication.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I've heard that body temp usually doesn't get back to normal, but I was hoping perhaps to get it to stop making the sudden drastic swings from high to low and back again. Drives me nuts! But I can deal with it as long as all these other symptoms continue to improve. Well, my doc hasn't kicked me to the curb yet, even though she isn't happy with the fact that i'm not taking synthroid anymore. I'm sure she will chew on me a bit when I go back in to discuss these new levels with her. lol. And no, i'm not going to increase my dose until I get more tests done and get a bigger picture of what's going on. I was diagnosed with Graves before RAI years ago, but being that I have symptoms of hyper and hypothyroid (which no doctor has been able to figure out why) is it a possibility that I could have Hashimoto's also, (not knowing anything about it though) or should I look more toward any vitamin or mineral deficiencies or adrenal issues?

  • Hypoplexed, it's not uncommon to have Hashimoto's and Graves. Thyroid peroxidase antibody and thyroglobulin antibody blood tests confirm or rule out Hashimoto's.

    Other than Hashimoto's, low ferritin can make you feel hypo and hyper. It's a good idea to have serum ferritin, vitamin D, B12 and folate tested as they're often low in hypothyroid patients and can present symptoms similar to hypothyroidism.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Ok, thank you. I have more testing coming up in March. I will request those to be done as well.

  • Hang in there

    It will get better on ndt

    My husband is on 5 grains

    Daughter is on 5 grains

    Grandaughters are on 4 grains

  • Thank you, i'm trying. It makes it easier to get thru with the all the help from everyone on here. :)

  • I had more tests already scheduled to have done this coming March, two days before I was supposed to see my endo. I called his office to see if he could add some other tests to the list, one of them being for Reverse T3. I spoke with his nurse, she said she had never heard of such a thing. She asked if I was still on my same dose of synthroid, as they had just gotten my recent labs from my GP. I told her I wasn't on it at all, that I was on an NDT. She said she would ask the doc about the reverse T3 and call me back. She did, and then advised me that they refuse to see me anymore because I was non-compliant for getting off of my prescribed medication. (REALLY?!) She said that the only way they would see me is if I was back on synthroid, and that she was going to report this info to my GP. Well guess what? I already told my GP. lol. She also said that she has no idea how I got an NDT without a prescription and that they were uncomfortable with that fact. Well...i've been uncomfortable for almost a decade on their worthless meds! I am only 3 months into all this and i'm already so furious with these people. I'm not a drug addict that is asking for controlled drugs. I just want to be well.

  • This makes me so ****ing angry. I can excuse their slavish devotion to thyroxine because I understand they need to follow scientific results to know what works and to avoid hurting people, but I can't forgive the way some of them feel the need to go out of their way to be cruel to people.

    Does your gp know she can do a script for ndt on a named patient basis? If her main concern is that you're using it off script?

  • puncurebicycle, i'm not quite sure what you mean by a named patient basis. Could you please explain to me a bit more?

  • stick to your care......drs and others just don't understand that this is not comparible to other tthey treat.........I agree you shouldn't increase bec your ft3 is a little high....so if you start getting too hot or hyper feeling...back down just a little bit like .25 or less than you are taking now....a tiny difference can make a huge difference when you are where you are now just tweeking it...you didn't take meds b4 lab test did you? if drs could relate people wouldn't go elsewhere for ndt..they would get it from them...my dr gave me the run around with my hair falling out too like it was no big deal...so I understand.... can I ask which ndt you are taking and how much synthroid you were on before.....I am on this journey too...same boat

  • Jacrjacr, I do get a bit flush from time to time, but my body temp is still fluctuating alot. Just the same as I get cold easily. I'm not feeling hyper at anytime though, and I haven't felt that boost of energy that I used to feel when I first started on ndt either. I may get an extreme sleepy spell in late afternoon, but i'm still experimenting with what time of day is best for me to take each dose. My last dose was 14 hours prior to blood draw for my tests. I am taking Thyroid-S split 3 times per day. Since I had heart palps for an hour or so if I just split it twice a day. I lost so much hair that I went a bought a wig. It was coming out in handfuls, literally! Even my eyelashes on my right eye are gone. It's so embarrassing!! Docs insist it's just from old age. It is starting to grow back in now, and hair loss is minimal. I'm 54 and both my parents had a full head of hair well into their upper 60's. I though perhaps to lower my dose by half a grain per day. Not really sure though. When do you start down this path? Are you improving?

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