Throid cancer survivor..12 yes later still struggling. Please help.

[JeepMomma24]

I had thyroid cancer at 23. I’m 36 now. STILLLLL no resolution with medication hormone replacement. I’ve gained SOOOOO MUCH WEIGHT over the years. But thank god at least I don’t have what I used to call “Thyroid episodes” anymore. That would be where my body would legit shut down completely for an entire day & id sleep through a hurricane if it had come through. Those “episodes” finally stopped when I FINALLY found a dr who actually was willing to listen & prescribed me the NDT instead of the other stuff that just never seemed to work well with my Body. Unfortunately as soon as he was introduce to the medical practice, it seemed like he was just as quickly subtracted. Personally I feel it was because he was actually trying to help fix people. Which nobody likes that mentality over in the US anymore lol. But anyways I’ve been on NDT (NatureThroid) for a LONG time. Im already WAAAAAAY above “normal” prescription dosage. 240mcg ? 2 90’s & 1 60… But my levels are ALWAYS SOOOOO OFF! I suggested adding T3 like he *Originally* had mentioned previously our last “visit” & suddenly he got so offended & defensive as if to portray “How dare you suggest I said such a thing”. I think I may have a “specialist” with memory loss & mood swings. ??? I also read taking NDT 2x daily is proper dosage as it is short acting of 6hrs average. So taking it 2x daily helps keep levels normal. But my “specialist” now suddenly doesn’t recall ever “agreeing” with that neither.. he had me splitting up my total amount to take half in the morning half in the early afternoon. But from what I’ve researched it sounds like I should be taking my FULL amount 2x a day. Not splitting it up. Could this be why my levels are ALWAYS sooooo up & down? I eat right. I take the meds when I’m supposed to. But my levels every blood work he gets, seems to show an INSANE amount of up & down in my numbers. & he just doesn’t care to listen to my “hopeful suggestions” based on scientific research.

Any help, any ideas.. any suggestions… Including where I can find authentic genuine Natural Desiccated Thyroid Hormone so I don’t have to worry about going without while I’m searching for a new dr.. any info, I’d appreciate via private message. Thank you!

[SlowDragon Administrator]

Different people need different doses

Different brands of NDT give very different results

Some people find it better to split dose 2 or 3 times a day……some don’t

Essential to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Please add latest results and ranges

When testing thyroid levels ALWAYS test as early as possible in morning before eating or drinking anything other than water and day before blood test split NDT into two or three smaller doses and take last dose 8-12 hours before test

Please add latest results

[shaws Administrator]

If you're in the UK I think many doctors now get jittery if they do not follow the guidelines which have been changed for the treatment of hypothyroid patients.

Many don't want to lose their livelihoods if they don't "toe the line" so that's maybe why yours has changed his mind.

So they are not permitted any more (it seems to me) to treat patients how they would like to i.e. prescribing other thyroid hormones rather than levo only.

As NDT contains all of the hormones a healthy gland would do it also contains T4 which is longer lasting. The effect of T3 can last three days (for one daily dose) although we take it daily.

One of TUK's Adviser, now deceased, was an expert in the use of T3 and he took it himself (in the middle of the night when he awoke so that nothing interfered with its uptake.

I've never split doses of T3, as Dr Lowe stated that one dose can last up to three days. I trialled that, i.e. took one dose, didn't take anything on day 2 or day 3 and I felt fine. Of course, I only did this once and always now take one daily dose. I have a life without carrying tablets around and it, I think, be impossibleto take dose 2 and 3 at exactly the same time daily. We are on these tablets for a lifetime, the easier we can take these the better for us.

nebula.wsimg.com/e0c9c9ed95...

[greygoose]

I also read taking NDT 2x daily is proper dosage as it is short acting of 6hrs average.

Sorry, that's just not true. There are so many rumours about how long thyroid hormones 'last', I do wonder where they come from. lol

NDT contains T4 and T3.

T4 - the storage hormone - has a half-life in the blood of 7 days.

T3 - the active hormone - has a half-life in the blood of about 24 hours.

'Half-life', for T3, means that if you take, say, 20 mcg this morning, by tomorrow morning there will be 10 mcg left minus what got into the cells. What gets into the cells, stays there for about three days. So, that's hardly short-acting, is it.

Some people feel better splitting their dose because they don't like the spike of levels after taking their dose. Others like to take it all in one go because they need to flood the receptors to get the hormone into the cells. We're all different, and we all need to find what suits us best.

But, your dose is your dose, and you take it once a day. If you take it twice a day, it is your dose split in two, not two doses, if you see what I mean.

Im already WAAAAAAY above “normal” prescription dosage. 240mcg ?

There is no 'normal' dose. You need what you need. But, do you mean 240 mg? Four grains? That's not excessive if that's what you need. I've known people to take more.

But, that is your dose, you don't double it to take twice a day. You split it and take 120 mg in the morning and 120 mg in the afternoon, or whatever.

But my levels every blood work he gets, seems to show an INSANE amount of up & down in my numbers.

Can you give us some examples?

Do you always do your testing the way SlowDragon describes below?

And, how do you take your NDT? Do you take it on and empty stomach and wait at least an hour before eating or drinking anything other than water? Do you take it well away from any other medication/supplements?