I stopped taking NDT in February this year, feeling frustrated and even fatter a year after starting out. I checked my thyroid this week with the results below.
I need to start something, I’m not sure what I’ve had some lovely, caring but conflicting ideas shared with me. What do other lovely helpful people think? And ultimately I know it is my responsibility, I would just like to hear others’ thoughts and what they would take into account in making a decision. Thanks for any thoughts on this
How much NDT were you on? And, how did you feel? Were all your nutrients optimal?
I cut back to 2 grains and was taking 6.25 T3 after I went over range in November (on 3 grains and 6.25 T3). That’s what I was taking when I stopped in February. I was optimal in vitamin and iron/folate. I’d taken a lot of information from searching and reading posts and was very pleased with myself. I am still taking: daily vitamin D3, B complex, C, Magnesium, K2MK7, Betaine. It seems to make no sense to have stopped now, but the benefits had seemed to plateau and I was longing to get my pulse rate up and lose weight. My temperature remained mostly low, though I do have menopausal hot flushes and my resting pulse rate during the day is sometimes 42-44 and that never changed. And I am not an athlete!
I was getting a lot of hip pain which was getting me down, but I am seeing results from Physiotherapy so that may have contributed. I did get some headaches around the time I went over FT3 range.
Did you go from 3 grains to 2 in one go? That's a huge reduction.
No I cut down from 3 to 2 between November and February. But I did just stop taking the 2 grains then. Looking at my diary, I did carry on with the T3 at 6.25 for a couple of weeks and then stopped that. I’d been on holiday and I felt fat and my hip was aching and I felt depressed that things weren’t better.
I sound a bit pathetic, but I realise that I need something, I just want to find out what. My friend is on T4. It’s worked so well for her.
Well, we're all different and we have to find what works for us as individuals. People usually start on T4, because that's the easiest. And, when you get your TSH down to around 1 you can then see how well you convert, and try different things from there. Have you ever been on T4 only?
Do you mean you stopped ndt without starting anything else. Are these your blood results off all replacement therapy?
Hello cjrsquared, yes I just stopped all replacement therapy.
Icicles,
From those results it looks like you are a good converter so may not need T3, either in NDT or on its own.
Why don’t you just take Levo ?
Thank you radd, I have ordered some. Some members of the forum very kindly offered ideas last night, but they weren’t all the same ideas and one idea was to ask more explicitly for help. I do really value what everyone has offered and don’t want to appear ungrateful, but I do feel like I can’t take the risk of getting stuck up another alley again and I don’t know enough, and can’t remember enough of what everyone is saying to make sense of it. Fingers crossed that the T4 turns up and I’ll give that a good go.
Thanks again x
Icicles
Yes, there are many combos & no one size fits all, but most people take Levo & function well. There is only a small subset that don’t. Levo has a bad name on this forum because most of us are within that small subset, but I have at least two friends who positively thrive on it.
If these results are indicative of your usual unmedicated thyroid function, I am surprised your endo prescribed NDT with an FT3 35% already through range.
Just raising T4 levels with Levo should be sufficient to increase T3 enough to bring well being but remember thyroid hormones require adequate iron & vits to work & convert well.
If Levo works for you, it is so much easier to medicate because it is prescribed free on NHS, appears more tolerant of elevated thyroid hormone antibodies (which you don’t have) and is more adaptable, in that you can always add T3 to Levo at a later stage but you can’t take T3 out of NDT.
You also won’t get the hassle of unusual bloods that GP’s don’t understand & which risk causing discontent with different specialists should you ever require other medical investigations.
Re your hysterectomy - a small amount of sex hormone are supposed to be sequestered by the adrenals after menopause to avoid us risking weakened bones, balding, going dry down below, & growing chin hair, etc ...
However, adrenals are usually too worn out to supply adequate if have been supporting low thyroid hormone for years & years.
Apart from risking the other numerous effects of oestrogen dominance, some types of endometrial cancer cells may be stimulated by supplying oestrogen alone, and if you were prescribed HRT, you should have been prescribed one containing both oestrogen & progesterone.
I haven’t had a hysterectomy. Just completely knackered adrenals. All hormones work together and my thyroid hormone replacement did not work well until I started a bio-identical HRT containing both oestrogen & progesterone.
Even with a hysterectomy, you still need progesterone for your breasts and brain. Shame NHS doesn't seem to believe that.
I wish that there was some answer to the question of my brain, maybe bio identical progesterone and oestrogen is it. My GP did a little wry laugh, said that they ‘had had a teaching session on it last week’ and wrote out a prescription for bog standard something or other.
Which bio-identical HRT do you use? Does it need prescription? Thanks
Nico101
Utrogestan 100mg capsules & Estradiol 0.06% gel given on prescription.
Mine is compounded for me: bi-est (oestriol and oestradiol), Progesterone and DHEA. Needs a private prescription.
Thanks. I'll look into this more when I get my results back from Regenerus.
If trying Levothyroxine make sure to stick to same brand and retest bloods 6-8 weeks after each dose increase
Make sure to take on empty stomach and then nothing apart from water for at least an hour after
Suggest you start with 50mcg Levothyroxine
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
Vitamin D, folate, ferritin and B12 are likely to have dropped since stopped NDT
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels, especially if now more hypothyroid
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
Perhaps consider getting DIO2 gene test to see if you need T3
thyroiduk.org.uk/tuk/testin...
Thank you SlowDragon, I’m going to give the Levo a chance. Thank you for the information, that’s really helpful, and for taking the time to help me out.
Is it OK to take Levo with mineral water?
I guess so. You wouldn't want one that had calcium in it though
I’m someone that has always done well on levo. Never had a problem. I would always go easy route first. A lot of people I have seen still feeling ill on it just need the right dose which can be a challenge where GPs are concerned. Good luck and I hope it works for you. Don’t forget to give it 6 weeks before you re-test.
Hi Icicles, Diet has worked best for me, I've given up gluten, soy and dairy except butter which is a fat. I can see a big difference in my health. Within 3 days of giving up dairy I felt so much better. We're all different, the key is to never give up.
Hello nottyash, I am hearing that I really ought not to diet right now, but I know that I could do with some dietary changes. I’m not going to give up, and glad to hear that you are well.
Just try giving up milk for a couple of weeks, I knew with in a few days it was the right thing to do for me.
Kind regards Denise
👍🏼
Hi icicles, I’m not an expert on thyroid matters but for the last 20 years I’ve dealt with heart problems. A pulse rate of 42-44 is far too low. I would advise an ecg & echo as sounds like you have a bit of heart block. Dont worry though as can be sorted with meds & this in turn will help your energy levels & metabolism. Good luck👍
Hello Hypothyro, thank you for your concern. I will get this checked out. Thanks for your support 👍🏼
Low pulse is common hypothyroid symptom
Wearing a Fitbit shows medics just how hypothyroid you might be
Also Fitbit records can be very useful to show weekly resting heart rate results, so you can track pro
Very useful tool if medics want to reduce dose, if TSH is low, despite still having low FT3 or FT4
It's not really safe for you to continue with no medication as you must have been told, with tests done, that you needed to take it so Levo is the easiest to get started on now. I was brilliant in Levo For such a long time till post menopause so well worth giving it a try. Good starter dose at 50 mcg's but make sure you get tested at 6 weeks so you get guidance as to what is happening or needs to happen.
If you haven't looked before have a look at the site of Thyroid U.K. who run this forum for help and advice, there are some do's and don'ts on there that may help you as well.
Thank you silverfox, I appreciate your advice. I am going to give it a try and see how I am in 6 weeks, and probably ask for help again.
I think if you have optimised all the necessary vitamins and minerals as recommended on this forum then you need to look at your adrenal health and possibly support your adrenals, as these are also key with regards to getting optimised on thyroid hormone. You could look at Adrenal Glandulars and/or Adrenal Adaptogens (Herbs). Have you also tested Reverse T3? This should be 15 or under and the RT3: T3 Ratio at least 20. Stress, infections parasites, heavy metals and toxins can all affect this. So to optimise your thyroid health you may need to dig deeper and work on your gut health, liver detoxification etc. Overall your levels aren't too bad considering you have come off the NDT and this can take several months to settle post meds. Your levels aren't yet optimal but I still feel you have some experimenting to do. Definitely should check Reverse T3 though as this can increase when T4 is not getting converted to T3. In which case you don't want to keep taking loads more T4, especially T4 only.
With T4 that low, high rT3 is extremely unlikely. If it is high, there is no way to know why - except what it won't be because of too much T4. Could be high cortisol, dieting, chronic disease, who knows? I wouldn't waste my money on an rT3 test unless my free T4 was over range. The ratios are also a bit of red herring for many people as they are an average for the whole population, whereas individuals have very different needs (as the original study by Poli that most of this is based on showed and is confirmed by more modern research).
It isn't about what the T4 looks like for doing a Reverse T3 Test but about why the T4 isn't converting so well to T3 and increasing these levels. It is always good to get this done in a Full Thyroid Panel at least once, especially if T3 is not going up which is what we need to happen for symptom relief and to feel better/optimal.
Still no way to know why you are making more rT3 than T3 apart from the things I mentioned earlier, so I think it's a waste of money and not helpful. As far as I can tell the number 15 was just plucked out of the air as an average with no reference to people's individual needs. It's not as though your GP is going to investigate it for you, so you just worry about undiagnosed chronic illness and the stress makes you worse. Even free t3 levels needed to feel well aren't set in stone, nor are the ratios. Some people even still think that rT3 blocks T3 receptors!!
You are right in that your GP probably won't look into why RT3 is up, if it is. it is something you would have to explore either on your own or with a Functional Medicine Practitioner. The figures I quoted are Functional Medicine numbers which seek to create optimal health and not just look at disease state markers before action is taken. This is why often people are unwell but their bloods may show as normal according to the NHS ranges and sometimes too from the Functional Medicine approach which seeks to identify the root causes of disease in the body. In any event Reverse T3 is sorted out by doing T3 only for a period of time for some people and for others who aren't good at converting T4 to T3 permanently. However this is all more than about just taking medication, lifestyle plays a massive part too. So in this instance taking more T4 would exacerbate the problem. It is of course up to the individual to decide how best to proceed for them.
P.S. Meant to say that RT3 does block the cell receptors and stops T3 getting in or even converting from T4 to T3 at all which is why this needs to be assessed.
It doesn't. That has been scientifically disproved and is not true.
The best thing I have done recently was to adopt a strict keto diet. I have lost 15kg in 5 months and generally feel much better in myself. It is challenging to do as you need to be really restrictive with diet and choice but after about three months I started to notice a real difference. I can't see me ever going back to a carb based diet again. The weight loss is a happy aside, the main benefit for me is energy levels and clarity of mind (never as good as pre levo but better than it was).
Hello sollas, I think that I could do a strict diet (I am the queen of dieting) but when I was losing nothing and struggling not to gain it was so disheartening. I think that once this is all underway I could look at that sort of thing. Glad to hear that you feel good and thank you.
May I ask what steps you took to get off it? I'm considering doing the same.
I foolishly cut down from 3 grains to 2 grains over about 2.5 months and then stopped taking it. It was a mistake, but I had had such hope and it was all gone by then and I felt relieved.
But you survived to talk about it. Were you miserable after just cutting out the 2 grains?
I did feel miserable, but I attributed that to feeling like all the hope that I had invested in it was gone. When I look back to it now, I realise that I did go through a pretty horrible time, maybe it was as much the withdrawal as the feeling that I had reached the end of something I had put so much hope in. I focussed on collecting some good quality supplements and I read some posts about Betaine and adrenals.
Why do you want to stop? Are things not going well for you? Everyone here seems to be saying ‘don’t give up’ and I agree, there’s something wrong and it’s finding the right way to tackle it. Xx
Hi icicles
What were your numbers when you stopped NDT please ?
Your current TSH is too high and should be round 1 and your FT4 too low and should be in the top third of the range
Thank you
Alps holiday
My result from 22.11.18 taking 3 NDT + 6.25 T3 was:
TSH 0.005 (0.27-4.20)
FT4 17.200 (12.00-22.00)
FT3 7.2 (3.10-6.80)
By February I had reduced to 2 and then just stopped. I didn’t do another blood test until this week.
What to do next!
Now what to do?
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