Hi everyone. I'm 48, a guy, and live in the states. I have had dry skin, no energy, off and on depression, and extreme fatigue for years. 2 years ago..my nurse p. said "I think it's your thyroid." to which I replied "I doubt it.." She got it. TSH was almost 5. I was put on levothyroxine, about .5 mcg, then up to .75. TSH levels never really got below 2 until .75 mcg.
I had been reading about NDT and asked her if I could try it. She is open and progressive. She phoned in an RX for .75 grain nature-throid (48.75 mg)
Within days I experienced the following.
1. Extremities warmer. 2. Morning joint pain went from a 7 to a 1. It's almost non existent. 3. Skin became smoother, and not as dry feeling. 4. Way more energy later in the day. I still need to rest after a 9-10 hour shift as a school administrator, but it's not the "i need to go to bed for the night" tired I used to feel.
Curious if anyone else has had similar experiences. I plan to go to Winnipeg in a week or so to see a naturopath and get my levels monitored. While my nurse here is awesome, I just wonder if she knows enough about how to monitor. Scared my TSH will be under 1 and she will cut me off.
I have not felt this decent in 25 years.
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bean218
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Welcome, it seems you're on the right track to getting better. I have been struck with autoimmune thyroid disease and have been battling for 5 years to get better but, as you found out, it is possible. It's a game of trial and error and you need patience and determination but it can be done.
For me T4 alone didn't work, mixed with T3 was the key but also having a low level of T4 was not good. A little bit suppression of TSH happened but I never take it into consideration more than a side indication. My body tells me exactly when I'm hyper. For example...too much t4 and bowel movement changes, with overall hyper sensation...too much T3 gets to slight palpitations. True, I am making my own decisions in respect to this illness. The doctors second and advice me but my health responsibility is my own.
In terms of tests, try to keep at least 12 hours between last dose and drawn blood, this will give you an accurate and consistent mean of observation and probably avoid issues with your levels being too high. That's not a workaround, it's a reasonable approach to testing.
I would advise to keep TSH under observation and try to keep it reasonable but i would use FT4 and FT3 as more relevant indicators while testing also for the larger spectrum of minerals and vitamins. Some of them (D3, B12, folate, ferritin) are critical for a good conversion and a feel well state. So is Selenium intake for your thyroid, as an example.
So should be vit D3 for joint pain, got tested low and the supplementation made wonders.
Sounds like you have a great nurse who’s switched on ! In my experience read read and do more research get yourself familiar with as much as you can
Check out implications on other low blood levels tsh,t3, t4, folate, b12, vit D, etc..
In my experience the symptoms kept coming back the only reason I got the correct help was to ask to see an Encrinologist, as it turned out I have primary Addison’s disease, since diagnosis I year on and self managed medication feeling really well, came off all my antidepressants having been on them for 12 years now also take vit d supplements, b12 / folate patches (like nicotine patches) and have injections every 12 weeks, still on t4 meds’ but my levels are all good.
And lastly pain killers for spinal injury by how do I feel - so much better it took me 3 years to get things sorted so sounds like your nurse is very good be ever so grateful not many get that level of support first time around.
It helps to know whether you have thyroid antibodies or not. If you do then over the months and years you will need a higher dose to keep you feeling well, until you top out at a 'full replacement dose' when your thyroid is producing nothing at all because the antibodies have destroyed it. There's nothing you can do about the gradual destruction of your thyroid except that some people find that going gluten-free decreases their antibody count so slows the process down. The first thing to establish is whether you have antibodies of not. There are 2 types, TPO and TPAg. I think it's the TPO antibodies that respond best to going gluten free. About 90% of people with thyroid problems have antibodies but you may be one of the lucky ones.
A TSH of under 1 when we take thyroid hormones is not harmful. You don't really need to have blood tests when on NDT and I'll give you a link to a USA doctor, now deceased and this is how he treated his patients. These are some links.
This doctor would not prescribe levothyroxine but only NDT and T3.
I am also in the states and had almost the same experience. I describe it as 'the heavens opened, the angels sang' and I got my life back. And all this within the span of 7 - 10 days. It was like a miracle after being on levo for a year. Bottom line... our liver never got the memo that it needs to convert T 4 to T 3. We are lousy converters.
Once you are optimized on NDT, it is almost a certainty that your tsh will drop to +/-1. Maybe time to start educating your NP or finding a thyroid knowledgeable doc? If your NP refuses to be educated, you can ask around at local pharmacies to see which docs prescribe NDT to their patients in your area. Remember, you can always do your own labs.
Many of us spare our docs the angst and just use them for labs and prescriptions and tell them that we are doing great (this is after we have found our 'sweet spot').
yeah that is a great way to describe it. The morning walk to the coffee pot is no longer filled with pain. Here all these years i was told to chalk it up to being old!
It’s very doubtful that the nurse will cut you off. Doctors and Nurses usually love taking the credit when they get something right and so they keep doing it! When you go to the naturopath asked them about selenium and vitamin D3. Also ask them about digestive enzyme‘s . Selenium will help with the conversion of T4 to T3 and so will the digestive enzymes . Most of us who have autoimmune disorders, which it sounds like you have, then also have digestive problems . It was a naturopath that gave me a test that discovered low digestive enzymes long ago before we knew what we know now about poor digestion and autoimmune disorders . You might also ask about leaky gut syndrome.
But again I wouldn’t worry about the nurse cutting you off from what’s working sounds like you have a really nice medical resource there ! There’s another thing you might ask the naturopath - ask about methylation support . The naturopath that I have here in the states just put me on something called Methyl Protect. That too has to do with digestive issues which I know I have but you may not have . Just some suggestions that you might want to discuss with the naturopath .
So happy to hear that you were back to your old self again keep on this path you’ll likely take NDT for the rest of your life - Or until the medical system that we have here in the states really anywhere in the world comes to grips with the auto immune disorders that are multiplying daily - And learns how to heal us.
One more thing. Now that you’ve joined the club please keep sharing what you learn keep sharing what works for you because we are all we have until the doctors figure out the cure. We do pretty good together and most of us eventually find our way back to a semblance of good health 😄
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