Hi All. I have been taking 2 grains NT for 2 weeks and feeling even more unwell than usual. I'm exhausted, muscle weakness, tearful, irritable, angry, low mood, despair. I started on 0.5 of a grain on Nov 2nd 2017 and got to 1.5 grains without any improvement, so decided to up it to 2 grains 2 weeks ago, still no improvement, in fact I feel much worse.
Seeing my doc next Tue and will get bloods done then too.
My question is, in the interim, should I drop back to 1.5 grains. My BP is normal, also my pulse, but my temp still between 36.0 to 36.2.
Thanks. Anna
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From experience its going to take about 4 weeks for your body to adapt to a new dose and I wouldn't put to much importance on your temp. Mine is always a bit below what is supposed to be the norm. If i medicated on my temp I would be be well over medicated.
Maybe you should have stayed on 1.5 grains for longer and if you still felt the need to increase go up just a 1/4 grain. Even the smallest increase can have a a bigger impact than you would think. For me 2 grains is a little to much but 1 3/4 is ok.
Also as I'm sure you've read on here, maximise your vitamins and take your dose many hours away from supplements and food.
Thanks NickP1, I just feel so dreadful on this dose - I'm working full time - almost left work today as just felt like bursting into tears all day, I was on one grain for 7 weeks and had all the symptoms of hypo - fatigue, weakness, brain fog, poor sleep, aches and pains, etc so though i'd try 2 grains. I'll give 1.75 a try and see what happens. Anna
I wish i could say its easy, but I'm sorry to say it takes time, patience and repetition to get it right , but you will not get any better help than off the guys on this website, all of my improvements have come from advice on here....
Good luck and keep your chin up, it will get better...
You've been on NDT for 3 months. If you really haven't experienced any improvement at all I would be suspicious something is going wrong.
Almost immediately when I tried NDT, even though the dose was tiny and my TSH was over 100, I could still tell it was a big improvement over the synthetics I'd been taking before.
Do you have thyroid panel blood tests from before you started? Maybe you should choose a dose you can stick to for 6 weeks and have a new thyroid panel. You need all the information you can get to assess the situation.
Have you been on Levothyroxine or T3 in the past? What were the doses, and did you feel improvement on those? Was it better or worse that the NDT?
Also, have you felt any worse or new symptoms in the NDT? Sometimes they just don't agree with people.
As others have asked, do you have results for your vitamins and minerals? Particularly if you've never had any success with replacement thyroid hormone in the past, you may need to get those sorted before your body can make good use of them.
I do think this is a very hard journey when you're working and trying to function to a very high standard, because things often can get worse before they get better. Build in as much rest as you can, and if it's possible to reduce your hours or go part time while you work on your health, jump at the chance.
Thanks so much for all your helpful comments advice SilverAvocado. I've had excellent advice from various people on this forum since I joined Oct 2016.
I started on all vitamin and minerals advised then and got everything to optimum levels at my next test. It did show that I have Hashi and that my TSH was a little high. I had numerous symptoms of hypothyroidism. Couldn't find anyone to prescribe Levo until finally in June 2017 i persuaded one of GP's to prescribe Eltroxin 50mg for 3 months, no major change in symptoms, went back and asked for a raise to 75, had a battle with him, gave it to me under duress, not happy, stated wouldn't prescribe again until I saw Endo, she not happy to give at all! So found private GP who prescribed Natural Throid in Nov 2017.
Did feel a tiny bit better on 75 Eltroxin. Really don't think T3 suits me! Anyway see what GP says on next Tue. Anna
Do you have any blood tests for when you were on Eltroxin? If you felt a little better, that's a step in the right direction. If the blood tests showed you needed a higher dose, then the whole picture would make total sense.
Some people don't get on with T3. It's quite unusual, and its more common to feel very racey, hot, speeded up, palpitations, etc. But sounds like you haven't had anything like that.
It's really strange to have no improvement at all. It makes me think of two things, 1) some kind of thyroid hormone resistance. I think I have this, and therefore need very high doses. There isn't much information available. But usually T4 would be the least successful treatment, so it would be something unusual. 2) Your main symptoms might be something besides hypothyroid. It's possible to have slightly hypo blood results because a separate illness is reducing your thyroid function. Responding to thyroid hormone replacement to some extent is kind of a test for whether thyroid dysfunction is a problem. More sensitive than blood tests.
But the body is complicated, so you could just be very unusual. Have you had plenty of blood tests, both thyroid panel and vitamins looked at by the forum? There are super knowledgeable people here, and they will certainly be able to spot things doctors haven't seen. And doctors will not treat vitamins (or thyroids) at all well.
Your thyroid panel was definitely right on the borderline when you first started meds, with a TSH of 2.5 and freeT4 and freeT3 halfway through their range. It's a bit ambiguous whether a healthy person could have these results and still feel well. It may be in the region of 10% of healthy people who would have a result like this.
You've had a positive anti body result, but also a negative one. This is a test that can give false negatives, and not false positives. But if it were me I'd like to see at least one repetition of the positive results, as lab errors and other mistakes can happen.
I'm starting to think, with the bulk of evidence, that you may not have a thyroid problem, or that the thyroid dysfunction may be secondary or being caused by another condition. The only piece of hard evidence is that anti body result, which is why I think you should get a repeat to confirm.
Otherwise, what we see is that the initial blood results are borderline, and you've tried three different formats of thyroid hormone and had very little change. I think the replacement hormone not helping you is a big clue. Often people have borderline results but the tablets do help, so then that serves as further evidence it's a thyroid issue.
I also noticed your vitamin levels were fairly good. Usually long term Hashimotos sufferers will have absolutely terrible vitamins. It only takes a few months to drop, as we sometimes see members taken off T3 and their results drop very quickly.
Please take this with a pinch of salt, as I am not as knowledgeable as some other members, and most of what I'm saying to you is based on looking at lots of other people's results.
Unfortunately, I can tell you this doesn't look that much like a thyroid condition, but I can't give you much guidance on where else to. In your position I would definitely widen the net and follow up any other possibilities for clues as to what's going on.
I am sure that with the Glandular Fever event, you would certainly be eligable for a CFS diagnosis. This is not a ton of help, but you should certainly ask your GP to exclude all the other fatigue disorders, Lupus, etc. I have a CFS diagnosis myself, although I still hope I will much improve with NDT, and I meet occasional people at meetings who have the classic pattern: they get Glandular Fever or another serious bug, and are never the same again. There are a dizzying array of possible explanations for CFS, and many on this forum believe that they are all thyroid disorders. But the proof of that pudding is getting improvement from thyroid replacement. Maybe some won't with T4, but T3 and NDT are more reliable. A forum like Phoenix Rising may be a place to start collecting information. I don't know if it is as good as this one, but some bits are definitely good.
I think my vitamin levels always good because I've supplemented for about 20 years desperately trying to find something that would make me feel better. No joy so far, the older I get the worse i get. Spending most weekend in house, but working full time. H have a mortgage so can't go part time. Thanks exp all your advice. Anna
anna... it is like the T 3 in the Naturethroid isn't getting into your cells, right? Maybe have labs done (privately?) and especially have the Reverse T3 done. If you are pooling, it would explain why you are feeling awful. Otherwise, you may have adrenal or iron issues. These links might be helpful for you.
When I was on Synthroid (T 4 only), I had those horrible symptoms, depression, insomnia, touchy, moody, etc. tho my labs said everything was just fine. Switching to NDT and taking natural progesterone cream seemed to improve everything, especially the moods and insomnia. Apparantly, converting was my only problem.
Hi Phoenix23002. I had 2 blood tests and cortisol levels done with MediChecks. Cortisol levels normal. Didn't have reverse T3 done and now unfortunately the company no longer send their kits to northern Ireland! 😞. Trying to find another company that will do reasonably priced tests.
I have major reaction whenever I use meds with t 3, whether it's t3 on its own or as now with NT. I felt very unwell, yesterday my mood was so low i though I was gonna have to take sick leave, so I only took one grain yest and today I've dropped to 1.75 grains instead of the 2 grains I'd been taking for 2 weeks. Mood a little better today.
I purchased the book Stop the Thyroid Madness last week, but thanks for zoning in on the relevant parts. I haven't managed to read it all yet!
Glad your doing ok yourself. Thanks for your advice and support. Anna
anna... something is going on if you can't tolerate T 3. Also... the saliva cortisol/adrenal test is supposed to be more accurate (the one that takes 4 -samples thruout the day) than one that is by blood draw. Good that you have the STTM book. Maybe look up pooling and Reverse T 3? If you have a Rt3 problem, you resign yourself to feeling pretty miserable for 12 weeks or so and drop your NDT down to 1 - 1.5 grains and take T 3 along with it if necessary. Some even just take T 3 alone for the 12 weeks. One of the mods on the STTM yahoo site took T 3 for a few years after addressing the things that created the R t3 situation in the first place. Over that 12 weeks, your R t3 numbers will drop and a blood test will confirm. Then you start to increase your NDT and you should tolerate the T 3 just fine. Again... the condition(s) that created the R t3 will have to be addressed and corrected. That can take longer than the 12 weeks for some.
Hi Phoenix23002. Yes it's weird, don't know what to make of the reaction to the t3. The cortisol test was 4 saliva tests done as instructed, on rising, 12 noon, 4pm and prior to bed. My private GP looked at them and said they were normal. Thanks for all your though provoking advice. Anna
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