Hidden in reply to radd

Radd🤗thank you so much for your response! It almost felt like getting a hug!It's been awful, but I make adjustments every 8 weeks. Something isn't agreeing with me and not sure what that is 🤔

My ft3 was at 70% and then I added 6.25 t4. Maybe this is too much for me, not sure, or I am badly fluctuating.

I have been back on NDT since September 2020 and another time I got palpitations was around December, I had to lower Armour again. I am also thinking if I either have to just change completely to Armour (I used to be well only on NDT, then I was taken off all 4 grains down to zero some years ago, then put back on it straightaway, nightmare, and then with dosage splitting, which worked horribly for 18 months and then went on levo only, so bad, and synthetics, awful). NDT has been a life saver, but can't get this dosage right, my ft4 keeps dropping into low range with high ft3 and I feel hypo then with some hyper symptoms. Sorry for such a long response

Oh and I split my 1/4 grain of Armour into two, so it's not too bad

radd in reply to Hidden

Swampyswamp,

Many members have experienced similar symptoms caused by intolerance to any thyroid hormone replacement meds when iron levels have been inadequate or cortisol levels unbalanced. Have you had these tested? Can you post results for members to comment?

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Hidden in reply to radd

All that is under control, I have been on iron supplements for several years, iron is high in range, ferritin above midrange from my previous test, Regenerus test was green on all four readings, but my doctor said that my lunch reading could have been a bit higher. My TPO antibodies fell from several thousands to 420 since moving to NDT, TG antibodies fell into range. The only issue I have, when I increase Levo by 6.25 mcg my FT4 doubles, this causes awful symptoms. I get really huge spikes.

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radd in reply to Hidden

Swampyswamp,

Well done for reducing such elevated antibodies. Especially when medicating NDT that risks elevating them if not raised quickly enough.

Spikes are usually caused by T3 which has a shorter half life. T4 has a much longer half life, and it is common for FT4 to drop when meds have T3 in them. Maybe its fillers in the Levo that you are reacting to. Why not try leaving it out?

Also nothing is static, even a test that is carried out like-for-like to the minute will differ slightly. That's just the workings of so many systems coming together.

Is your doctor functional? What did he say about the CAR? or DHEA levels? For many members their doctors 'normal' isn't enough for good thyroid hormone function. Can you post cortisol, nutrient and iron test results so members can make more informed comments.

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Hidden in reply to radd

Thank you, NDT always served me well when it comes to lowering antibodies.Ft3 has stayed (as you can see in my previous post) at the same level of 70-72%, but ft4 went from 27% to 56% after 6.25 increase, which is quite incredible. No issues with fillers, tried another levo brand called Letrox, is the purest pill form, no difference, same results I'm afraid. I also seem to absorb and metabolise medication very well.

My doctor is conventional, but he is very good. My functional doctor just wanted to medicate me with t3 only and wasn't really knowledgeable on female hormones. I had DHEA checked by blood and saliva, they were also good (not low in range), I was also tested for other autoimmune diseases like lupus, Sjoergens etc in a hospital, CT scans etc.

It is purely my thyroid as I haven't been properly medicated for the past 4 years. I used to take 3-4 grains of Armour or Nature Throid, then I was told to take none from one day to another and landed in a hospital. Then it was all restarted with a full dose, again, one day to another with 3 grains and it was the worst, 2 months bedbound. Then reformulation of Nature, then synthetic combo for 18 months with disastrous effects. Now worked up to 2.5-2.6 Armour, but not 100% if I should be just on it or adding t4 to it. Very sensitive to dose changes after that episode from few years ago when I was taken off all meds.

May I ask how much NDT you are taking and how you're frees are on it? Thanks 😊

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radd in reply to Hidden

Swampyswamp,

I have no thyroid and medicate 1.25 grains NDT, sometimes raised to 1.5 grains during winter. My frees are low -middle as I too am sensitive to thyroid hormone but on these low levels I function well.

'It is purely my thyroid as I haven't been properly medicated for the past 4 years'.

If thyroid issues have been ongoing for some years it would be unlikely to be ‘just thyroid’ as each bodily system is joined heavily influencing each other. Read up on the HPT, HPA, HPG axis for further info.

The forum is a wealth of information and by supplying test results & answering members questions you invite members the best chance of offering helpful suggestions re their own experiences, that might hopefully enable you some well-being to be regained.

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Hidden in reply to radd

Thank you radd, I assume your TSH is not suppressed if you can do well on a small amount? I have Hashimotos and central hypothyroidism, I need my dosage on the dot otherwise I get symptoms as my TSH is always suppressed even with low ft4 low ft3 or below range. This is why I landed in a hospital some years ago as my thyroid didn't kick in after removal of medication and was diagnosed then with central. Other hormones are still being produced by pituitary. I had parathyroids checked, growth hormones, all of it. I have been on this forum previously, but then went offline for a while. I have been pretty much buried in research studies since 2017, I am familiar with what you are referring to. It's disheartening as I have been doing well previously and living well and active life on 3-4 grains of Armour or Nature. Perhaps this is the direction I need to go and maybe adding t4 is not the answer for central hypo.

I really appreciate your help and that you took your time to speak with me

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radd in reply to Hidden

Swampyswamp,

My TSH is under-range or even suppressed at times, the same as most peoples who are medicating meds with T3 in. Also many members (if not all) need their meds on-the-dot because being ill offers a smaller range of tolerance. We call it our sweet spot 😁

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Hidden in reply to radd

I understand radd, that's great you can take a relatively small dose and feel well.Oh no, I know what you mean, I am talking about even more fine tuning, like 3 mcg t4 or 1/8 NDT. I have read recently that Slowdragon dropped her dose by 25 mcg a day and she needed to only drop by 3 mcg a day to fine tune, otherwise her ft4 went drastically low. Once you build up your dose and have suppressed tsh, if anybody takes you off all meds and TSH is still suppressed it is very hard to come back from that your whole body is shutting down bit by bit. Different story when you increase medication upwards, never had a problem doing it before that episode 4 years ago.

Thank you so much, it's good to have a chat Radd 😊

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AS14 in reply to Hidden

Thank you I’ll check out Clarebears story. Ive been doing this a long time too, actually a really long time but it wasnt until after crashing massively that I started to put all the pieces together and like you say it takes time.

I was on T4 for years, it helped to point kept me from being bed ridden which I was before it. I always knew something was missing but after being diagnosed with m.e/cfs years previously and being told it was the cause of my symptoms, I believed what I was told.

Took a long time to realise what I needed was T3 , getting it to work is a whole other story.

Ive used Regenerus twice, once 6 months ago which was on the floor, blood and urine saliva were also low so it made sense, I had low cortisol all day.

Since then Ive been working on improving cortisol, a recent blood cortisol was top of the range which all doesnt show it accurately the fact it shot up hundreds of points made think surely the free cortisol I have must of improved to a degree.

I rechecked with Regenerus 4 weeks ago and not only had there been no improvement it was far worse, the morning was twice as bad and it wasnt even in range 6 months ago. It didnt fit with what Id be doing to improve cortisol nor the massive increase in blood levels plus my symptoms dont fit.

I had read some bad reviews on Regenerus, but mostly it was my symptoms that had me questioning it. Anyway I rechecked with Zrt and the results are the total opposite of Regenerus, couldnt be more different if you tried. Morning was half way through range, the rest is high, it explains an awful lot.

Just my opinion but zrt will be my choice in future.

Anyway yes meds have to optimal but figuring it all takes time as you say.

Hidden in reply to AS14

You sound a lot like me AS14, I used to be housebound and bedbound at some point too.Thank you for info on saliva, this really sounds puzzling, I might do ZRT next time too, if I can find it here (I'm not in the UK).

As you say, one thing is to know I need t3, another to make it work. Synthetics were awful for me, and Armour is a different story so much better, still not plain sailing as I'm still hypo, but much better.

I was also diagnosed as CFS, but my doctor wrote low t3 syndrome as a cause. He was pretty spot on.

I had high cortisol on all 4 readings some years ago, checked with Reg and Genova, both were more less the same, but who knows the quality could have changed. I was very hypo back then, awful.

I really hope you will feel better soon AS14. There is a light at the end of tunnel, I used to be very well on NDT, for many years.

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AS14 in reply to Hidden

Thank you thats very reassuring, been rough ride to say the least. Can I ask how long it took for you to start to feel better on ndt?I found out purely by accident that I had low FT3 years ago, long before I had my thyroid removed, it never changed when put on T4. I asked at that time what it meant but was told not to worry about it, its the tsh that counts.

The T4 eased my symptoms a little, but far from well but the doctor kept saying my symptoms couldnt be thyroid so I believed they were m.e.

I really thought I had two seperate conditions, Im now sure its been hypo all along.

I had a very brief but disastrous trial of T3, awful side effects plus trying to raise it made it so much worse, Im now sure that was down to low cortisol.

I have felt a very brief good effect of T3, and it was amazing, day 3 of a taking it was like everything switched on again for the first time in many years. Huge light bulb moment, realising its what been missing all these years is huge. Ive tried countless things and nothing gave me that great response like T3 did.

Catch it takes time to figure out whats happening and then how to fix it.

Ive just started ndt in the last week, so very early days but Im going to be treating the highs and lows of cortisol and work on improving iron.

The Regenerus test didnt make sense so to reassure myself if nothing else I did the Zrt. I was shocked how different they were, polar opposites to each other. They were done 4 weeks apart all points on Regenerus were very low, the morning didnt come anywhere close to the bottom of the range. Zrt morning was approximately 60% through range, the rest all above. I highly doubt a difference of 4 weeks makes a very low level go to above range.

Thanks very much

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Hidden in reply to AS14

That's is great news you are on NDT now.It took a while to feel better, but in the first month I felt it was much more gentle and transition from synthetics was good. I made a few mistakes so now I'm still not great, but it is so much better than the other combo. NDT feels more gentle for me so build up is slowish, sometimes felt like going backwards, but it wasn't it. From synthetics I get more like a kick that doesn't last long and I uncomfortable.

Definitely read Clarebears posts, she saved my sanity.

Yeah these conditions can be easily a thyroid problem, as my doctor indicated.

Yeah you are right, something is really off with that testing.

You will see that cortisol will all level out on a proper dose. It did for me, without any other work.

See t3 synthetic and in NDT work very differently. In synthetics t3 is available immediately and is not bound to protein so it is active straightaway, NDT t3 (as is t4) is bound to protein, so it can take 4 hours to get released as per its more complex molecular structure. So I find it lasts longer and evens me out. I take it all once a day. X

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AS14 in reply to Hidden

Im only just on a starting dose and dont feel any different of course but I can tell its far gentler than the T3 I tried. That was so harsh not a nice feeling. I prefer ndt as it contains all parts of the hormone and with not having a thyroid Id get all the hormones

Thanks very much for your help, Im off to read Clarebears story.

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