NDT does not seem to be working so far. What to do?

I started off on half a grain of Nature-Throid about 3 weeks ago and increased my dose to 1 grain after two weeks. In terms of subjective response, it hasn't had a positive effect - if anything I feel worse, though that may due to a cold I've had on-off for the last two weeks or so (off now I hope). None of the subjective symptoms - primarily tiredness/lack of energy - have improved.

Objectively, my resting pulse rate seems to have increased and is now usually 60 during the day - though taking it now, late in the evening, it is back down to 50. By the way, how bad is a pulse rate of 50 - is this something I can take to my doctor and be taken more seriously? I am reasonably fit when it comes to running (no superman though), but would that explain it?

Body temperature (during the day - I know I should take it just after waking up) seemed to have improved initially - going to 36.6 and even 36.7 - but is now again coming in at 36.5 and often lower. Though I'm not sure if this electronic thermometer can be trusted. After it beeps, I leave it for a good few minutes longer because the reading keeps rising before it truly settles, so I hope this is giving a more accurate reading. (If I take the reading when it beeps, then it is like 35.5.) My reading now is 36.3-36.4 (corresponding with the low pulse rate I guess).

Any suggestions?

19 Replies

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  • You need to give the thyroid hormones much longer to get into your cells and thus hopefully make you feel better. Three weeks on NDT, if you have been ill for some time, is a very short time to see improvement.

    TAke one step at a time and keep a note of any improvement or symptoms that you notice have cleared completely. Once the body temperature improves, you should start to see a difference.

    As I've said on one of the other postings, have a read of Peter WArmingham's theory on the Thyroid UK site. Initially on a low dose of hormone replacement, the body stops producing so much and so you are back to square one. As the dose increases, it will finally come to a point where the intake of NDT is more than the hormone produced by your body.

  • Hi,

    Thank you very much for the reply.

    I thought that because NDT contains T3 the effects would be noticeable fairly quickly (sooner than with T4 alone).

    Which page on Thyroid UK are you referring to? I would be interested in reading an explanation as to why the thyroid would slow down even though presumably not enough hormones are being provided from the NDT.

    Thanks again.

  • Hi again,

    There's a very interesting paper on thyroid test results if you are on thyroid medication.

    Type in Are biochemical tests of thyroid function of any value in monitoring patients receiving thyroxine replacement. W D Fraser, E M Biggart. It's in the British Medical Journal volume 293 27 September 1986.

    Back to Peter Warmingham,

    I've bypassed the Thyroid UK link.

    thyroidscience.com/hypothes...

    That is John Lowe's Thyroid Science site.

    Often yes, you do notice a difference with the T3, but on 1/2 you are only getting 4 1/2mcg of T3, now you are getting 9 mcgs so you should start to notice a difference, hopefully.

    HOpe this helps.

    <b>Updated on Nov 16 2010 7:27PM:</b> thyroidscience.com/hypothes...

    Sorry the full address didn't come out properly.

    <b>Updated on Nov 16 2010 7:30PM:</b> thyroidscience.com/hypothes...

    The paper is entitled, Effect of exogenous thyroid hormone intake on the interpretation of serum TSH test results.

  • Effects might well be noticeable in a short period. I noticed some changes within minutes of my first tablet. Improvements are often individually small but cumulative.

    I am on a small dose (currently 50mcg thyroxine) and can say that over the months have noticed tiny things here and there - not major changes. For example, one day I realised I wasn't needing my work glasses (for the computer screens), another day I noticed my hair was growing better, and so on. And most days there is no noticeable change from the day before. But overall there has been a marked improvement.

    I've often suggested that it might take as long to recover as it took to deteriorate in the first place. And for many this will be years. (No scientific basis for this - it just seems that the stories I read all point in this direction.)

    Keep going. And really don't panic about minor changes in pulse or temperature - and you might need more - or a different balance. But expect slow changes.#

    All the best

    Rod

  • Hi Muffy,

    Thank you. The link does work - it just doesn't display fully. I'll read this now.

  • Thanks Rod,

    I'll keep going and hopefully I will eventually notice some improvements.

    I probably had too high expectations in terms of how quickly it will work. I know that medications often take time to work and sometimes you feel worse before feeling better - maybe that's what is going on here.

  • On Friday last week I suddenly felt as if I had gone backwards myself. I did what I would not recommend anyone else to do, I took an extra 50mcg. And by Saturday I felt back on track.

    No explanation for that. Maybe I need a increment and had been slowly falling behind?

    But it is very common for people to start out fine and then slip down the slope a bit.

    But do be careful and don't allow yourself to go hypo.

    Rod

  • I am just reading the paper linked to by Muffy. It is really interesting and if I understand things correctly a suppressing feedback loop does seem plausible during treatment at least in central hypothyroidism (not sure about primary though - why should there be negative feedback if serum t3 and t4 is not at the optimum point in this case?).

    Maybe you need to increase your dose. 50mcg seems quite low. Did you try >50 and go hyper?

  • No - I didn't try > 50. I am one of those oddballs - my fT4/TSH came back into sensible ranges quite quickly. I have no antibodies. And even at diagnosis I was only at around TSH = 5.75.

    Maybe I do need an increment but at present I feel comfortable with being able to add a bit if needed. My focus is more on the cause of nausea which I am convinced is based in my thyroid and/or parathyroids - but having difficulty getting an ultrasound scan.

    And yes, I have read the Thyroid Science paper.

    Rod

  • Sorry to hear about the nausea - I sympathise greatly.

    Does your GP not want to give you a referral for the US? By the way, you can get ultrasound/mri/ct scans quite cheaply in Germany and not surprisingly they have really good technology. Have a look at mri-abroad.de - not sure if they do US, but I used them before for an MRI and they where really good.

    Since under-dosing is a possibility given all the arguments being made, maybe you should try increasing to see what happens with the nausea. Unless you have a heart problem it doesn't appear to be that dangerous to go slightly hyper, so there shouldn't be much risk. You're obviously far more researched in these matters, but that's my understanding.

    By the way is nausea a common symptom of hypothyroidism?

  • My GP referred me for a US. That was thrown out by the X-ray/US dept. as they now only take US requests from the newly created "Thyroid Clinic". (We knew nothing of the existence of this clinic until I rang to find why I had not yet heard about an appointment for a US. Nor had my GP.)

    I could pay for one (and might yet do so) but still need a GP referral - and he is on holiday at the moment.

    My particular form feels like something is putting some pressure either on my oesophagus or on a nerve somewhere close by - not full 'stomach' nausea. Unpleasant but not unbearable.

    I've noticed no change whatsoever in this nausea between before diagnosis, through diagnosis up to being on a reasonable dose (for me, for now) - just seem to have a bad day, a good day or an inbetween day in random order.

    Rod

  • "Thyroid Clinic" is this something in your local area or a nationwide phenomenon?

    The good news is you don't need a referral if you go abroad.

  • No idea. We have heard of Thyroid Clinics in other areas in the past - but this appears to have been established just as they were trying to cut costs which makes you wonder what the motivation was?

    On the basis that this is consultant-led it looks to me like it is a way of blocking GP requested investigations. After all, most thyroid patients never get to see a consultant about their thyroids.

    Going abroad, even as the cheapest foot passenger, would be so much more expensive than a private US here. Last price I saw was £80 for a thyroid US by a local sonographer working out of the NHS hospital itself!

    Rod

  • Interesting and bad for thyroid patients. It doesn't make sense to be setting up additional clinics in these times, unless it's, as you say, a way of cutting costs overall.

    Ok I guess that's why they don't advertise US on that site - it doesn't make sense financially. Though when I flew to Germany the flights were only like £20 return.

  • This link from Stop the thyroid madness may also help

    stopthethyroidmadness.com/n...

  • Thanks.

    My TSH was quite low to begin with (about 0.5 - along with low t4 indicating central hypothyroidism) so could full TSH suppression occur as I increase the dose? If so, do you know if full TSH suppression is reversible in case the NDT doesn't help and I want to stop treatment?

  • I am sorry but I am not medically qualified to answer this question. Dr John Lowe offers a telephone consultation (you would pay for this) or email Tammy Lowe. Details on the following link

    drlowe.com/clincare/service...

  • Thanks for the link I will check it out. It would be good to speak to an expert on the matter.

  • In case anyone comes across this thread with the same question regarding TSH suppression, I have found the following studies which suggest that the hypothalamic-pituitary-thyroid axis returns to its previous state following thyroid hormone therapy.

    ncbi.nlm.nih.gov/pubmed/808728

    ncbi.nlm.nih.gov/pubmed/807596

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