I have been taking NDT for five months now and have had a difficult time raising my dose. I raise then feel worse so have to cut back again.
I did managed to eventually get up to 2 grains but got a severe heat sensation throughout my body along with bad pricking and itching. I reduced to 1 1/2 grains and have been on this dose for just over fours weeks now. I have been O.Kish. room for improvement.
I had my bloods taken last Friday and have just got my results,
TSH 0.42 range 0.35 - 4.7
T4 7.6 range 7.8 - 21
T3 5.2 range 3.8 - 6.0
As I cannot seem to raise my NDT dose any higher, I was thinking of adding some levo. to help raise my T4 in hope I may find some improvement.
Any thoughts anyone?
Many thanks.
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lucylocks
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I'm on the same dose of NDT as you, and my endo has put me on 50 mg of thyroxine as I was slightly hypo. I can't say that it has made me feel any better, and I now have oedema as well. I am staying on the thyroxine until my next appointment to demonstrate that thyroxine is not the magic fix that endos believe that it is.
Of course you may have a different reaction, and I would suggest trying the thyroxine to see how you get on with it.
when I was taking levo. I did the 24 hour urine test which actually showed I was converting the T4 in levo. to T3 , I was just not taking enough of it because my G.P. kept reducing according to TSH (as they do) I decided to try NDT as I was so fed up of the levo. reduction
The blood tests for thyroid hormones were introduced for levothyroxine alone. When T3 is in the 'mix' then T4 is lowered so there's no need to worry about low T4. T4 is inactive. It's job is to convert to T3.
Maybe you have reached your maximum or have you tried a tiny increase of NDT? Also if a small increase doesn't work, you could try a little T3, seeing that's the active hormone.
(I am not medically qualified just have my own experience of being undiagnosed/unmedicated)
my T3 is at a pretty good level so I am not sure I need much more adding. I was under the impression that a low T4 when taking T3 only did not matter but I thought T4 when on NDT should be at least half in range, or have I got that wrong?
The most important point when on any thyroid hormone replacements is how we 'feel'. If not quite right an adjustment is needed. This might be helpful:0
If both levels are low you aren't on a sufficient dose. Blood tests don't tell the whole story its how we are affected by the hormones and relief of clinical symptoms.
I recently managed to wean off Medrol for adrenal fatigue, after more than four years on it, but my most recent labs make me wonder if I still suffer from adrenal fatigue, making it more difficult for my body to absorb the thyroid hormones...? I have been on both Erfa and Thyroid-S in the past year, and needed 7-8 grains on both. However, as soon as I try to raise NDT further, I get hyper symptoms such as racing heart, profuse sweating, and nervousness.
If you develop hyper symptoms that's a positive for 'too much'. Usually you drop back to the previous dose and stay on that dose for at least six weeks.
If we chop/change/go too quickly our body hasn't a chance to settle into a dose. 7-8gr some people do need. Did you feel any improvement at all when increasing and usually the increase is a small (1/4) dose about every 2 weeks.
Also taking temp and pulse before beginning and during the increases is helpful too. If temp or pulse is too fast you're taking too much and then reduce back to previous dose.
Listening to our bodies is the best way to go on thyroid hormones.
The problem with Thyroid-S is that it is available in one strength only (1 grain) and the pills are very small...it's therefore almost impossible to split them without them crumbling...
I did fine on 8 grains for a long time (while on Medrol), then, after weaning off adrenal support, seem to need less NDT...logical???
I have been considering giving Armour Thyroid a try, especially since some claim it's now working better than right after the 2009 reformulation. If it contains cellulose which slows absorption, maybe that would be good for me...?
I am taking W.P. thyroid which has only three fillers. A lot of people swear by it, but I have had problems trying to raise it, but I could have had the same with any NDT. One suits one does not always suit another.
Sometimes we might need less, particularly if we've been on another type of medication. I think Armour is one of the most expensive and ThyroidS has been given some favourable reports from members.
i.e. splitting tablets instead of 1/4 tablet you might be able to halve one if you use a pill cutter. It doesn't have to be exact but approx. Usually the pharmacist will tell you what he prefers to use.
I took Adrenal Xtra etc. but I felt worse. One doctor advised treating adrenals and another said that once my meds were optimum my adrenals would sort themselves out and it appears to have worked.
However, I do know some members have responded to treating their adrenal glands.
anna69 are all your vits and minerals optimal as from my understanding 7 grains of NDT is quite a lot so it makes me think you may not be absorbing it properly.
this could be why you NDT is not working properly,
I was once told by an endo. everybody needs their ferritin to be over 100 to feel well. I think when I got mine near this level my T4 went up to 19 and this is when I felt well on levo.
Some say B12 needs to be near 1000 no matter what range it is. Not too sure about iron as their are various other tests for this that I do not really understand, maybe someone else can explain.
Some say over 70 for thyroid meds. to work, some say half way in range so if range is 15 - 300 that would around 150 but the endo. said 100. so again lots of different ideas.
That's interesting, claire. Somewhere in the book 'Stop The Thyroid Madness' they say that NDT can be taken with food. It's often not convenient to take it on it's own.
lucylocks, have you checked your vitamins & minerals? They need to be optimal for making best use of your thyroid meds. I've recently had my supplements reviewed and am finding that I can reduce my NDT dose a little - may need to put it back up when the weather gets colder.
I always take my NDT at least one hour before food or two hours after food, everyone seems to say this is the best way to take it.
When on levo. before NDT by T4 and T3 were around mid range. I did manage on a couple of occasions to get my T4 up to 19 and this is when I felt my best, but of course G.P. reduced because of low TSH. I got so fed up of them doing it so this is when I decided to try NDT.
I take Vit B12, B Complex, Vit D Vit C a probiotic and iron once or twice a week.
I do seem to convert T4 in the levo. to T3 as a 24 hour urine test showed but I was not on enough of it.
That's a real shame that you felt good and your doctor based it on tsh. I don't mind if my tsh goes near zero as long as feel good and having a life!
This might not be helpful for your original question. ...but have you considered ignoring your doctor and carrying on with levothyroxine dose that was good for you? As long as you can get supply and prescription?
Seems like a lot of people here just do what they gotta do.
After my G.P. reduced my dose of levo. from 125mcg. to 100mcg. I went back to see her as I felt awful, she would not put my dose back up as she said she had to go by the guidelines and would not risk losing her liceince. I told I was going to self treat with NDT. she said O.K. and she would monitor me but then said she would write to one of the best endos in the area for advice about the dosage of levo.
Around two months later she contacted me to say the endo. said he was not too concerned about a patients low TSH as long as their T4 did not go above 18 and said she now felt better after he said this and she was willing put my levo. back up to 125mcg. and work with me so I felt better.
I was now well on my way to slowly increasing my NDT dose and told her this.
I have actually thought about going back to levo. if I do not find any further improvement the only thing is I am not sure how to go about it, whether I just go back to 125mcg. or start low and build up again.
Maybe I should add some levo. to the NDT and see if helps.
Yes I'm sorry I don't know about ndt plus levothyroxine or the transition from ndt to levothyroxine. I just know if something worked and was available approved and didn't do me any harm. ..I'd probably take it. I can understand why you want to persevere with ndt.
Actually, my FT4 levels looked a lot better on T4 only drugs, and my FT3 levels were about the same...they are still mid-range on high doses of NDT.
One problem with Thai NDT (and the reason I've been considering switching to Erfa) is that I am not sure if hormone levels are consistent, or if they vary from batch to batch...
Yes, I take a little levo as a side order with my ndt, and I feel better with levo in the mix. I started doing that since porcine thyroids don't contain quite the same ratio of hormones as human thyroids. But we all seem v different on this forum, so it could be a case of try it and see if you feel any different.
and the lady actually explains the reason some people do need T4 adding to their NDT. is like you have said is because of the ratio.
Do you mind me asking how much NDT and levo. you are taking and what your levels are like. I realise we are all different but it would be interesting to know.
I am not fully well yet, it can take two years, and I suspect I had antibodies since childhood. I take 50 levo and circa the equivalent of 50 to 75 in ndt, depending how I feel. when I get that 'must have a coffee' feeling I stop myself and think.. 'when did I last take ndt? do i need more?" instead of hitting the espresso.
I find that sometimes I get low in iron, I watch my cravings for meat and lentils, and that when I take the iron then I have more energy. A lot of it is carefully watching your own reactions. I think maybe the craving for sugar is the body lacking folate, for example. The whole thing is like trying to play chess without having been taught the rules.
My last tsh was low cos of the ndt, 0.01 or similar, I am thinking of going off grid and sourcing all drugs on the internet and self testing levels. I have a blood pressure monitor, and this helps see where I am, and that coffee causes it to soar... the degree of self education is exhausting. But I think conventional medicine is a long way from absorbing the mound of research on thyroid problems, and I can't wait for them to catch up. I was an infant in Cumberland when Macmillan's secret plutonium factory at Windscale blew there in 1957, and research from Chernobyl now suggests that this exposure causes thyroid antibodies in children and adolescents, though whether this results on hypo years later has yet to be shown. Bet it does, though.
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Ps, my t4 and T3 at last test were just over the range.. but I am feeling better, so long as I remove the long standing coffee prop.
It does make you wonder about things that have happened as a child.
When I think back I sometimes wonder if I have had thyroid problems all my life. I was a very thin anxious child., then I was ill one summer in my early twenties, lost lots of weight, felt real nervy, anxious, had bad panic attacks and continued to have these various symptoms from then on.
I had an uncle who I am sure had Graves Disease but was never officially diagnosed. He shook uncontrollably, was terribly thin, suffered from what his Doctor said was "nerves" and had really severe migraines and really poppy bulging eyes. He was always ill. Poor man.
Makes me wonder if I actually had a similar problem when younger and had antibodies which has now result in hypothyroidism.
It is interesting what you say about Windscale and Chernobyl, it really does make you wonder.
Like you I can't wait for the catch up regarding thyroid issues. My G.P. did actually admit that endocrinology needs an overhaul but then said it may take ten years or so. What are we to do in the meantime, self educate and self treat as we have been doing anyway.
I have been asking myself the same question lately...as my FT4 levels came back at the bottom of range, and FT3 levels turned out to be mid-range only on as much as 7 grains of NDT...I seem unable to raise NDT further without feeling hyperthyroid (which, to me, is even worse than hypothyroid...), so I have been considering adding some T4 to the mix...
Yes, as a matter of fact, I have been wondering about this lately...many claim that T4 is inactive, and is only there to be converted to T3...but I have also been wondering if some T4 added to the mix would not be beneficial for me...
Lucylocks I'm afraid you will need to experiment with the amount of levo. I also have low T4 levels but am really reluctant to take levo again as I didn't get on well with it at all the last 10+ years I took it. I'm currently taking Nutri Thyroid as an alternative but only get blood tested next week so not sure whether it has raised my T4 levels yet.
Lucylocks I thought you might like to know what a difference Nutri Thyroid has made to my free T4 results. I increased my NDT by 1/2 grain as my free t3 was just below mid range but the huge difference was my free t4 as it went from 12 in June to 20.3 last week (reference range 11-23). It seems the Nutri Thyroid worked for me.
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