I don't know what to do, I dropped down from 3 grains as I was getting heart palpitations, and I have very high blood pressure after 6 months on medication: 140+ when I am 23. My results were normalish on 3 grains, but now I suspect that NDT is simply the wrong medicine, as I always took my blood tests in the morning 24 hours after my main dose (2 grains in the am).
I went down to 2 grains from 3 for 2 weeks, as I thought maybe I could get off the medicine altogether, as I am a young male who doesn’t have an underlying condition, just a wacky reaction to a hormone drug.
My results are bewildering (these were taken at 5pm, only 1.75 grains taken on the day) after 2 weeks of 2 grains (1.75 in am, 0.25 in pm):
T3 4.22 (2.5 - 3.9)
T4 6.3 (6.1 - 11.2)
TSH 0.031
I felt very lethargic/unmotivated/depressed these last 2 weeks, but didn’t feel overstimulated or have heart palpitations.
So I really don't know what to make of this, my T4 is very low and T3 very high, I function better mentally on the 3 but feel I am doing long term damage.
Could my body be medication free? (I don't know if my body took any of the load these last 2 weeks, maybe my T3 was just even higher on 3 grains)
Am I on the wrong medication?
I feel like T4 would be so much easier, and be the right medication, but I don’t know how to switch, and I am at a crucial point in graduate job applications, so don’t want to have an adjusting period.
Any help would be most welcome, every time I feel I know what is going on, I am so far away, but I think my constant problems are to do with NDT, as I think at some points in the day my T3 is fine, and then it is too high, so it’s more the dosing schedule.
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biowarrior
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Hi biowarrier, thyroid medication is tricky to get right and so it’s best to only take it if you have to - I suspect that is why the medical profession use the term sub clinical. However there are a number of us, like you who feel that we need treatment while medical profession are still using the sub clinical description. From looking at old posts it seems that this is how you’ve come to be taking NDT.
However, a full one grain drop is a large reduction. And any test will only be useful if done at a time of stability. Incidentally, high blood pressure (if both figures are raised) indicates undertreatment, for me at least.
Levothyroxine is the standard treatment for hypothyroidism and most people can get perfectly well on it, or perfectly well for a number of years. It is the first treatment to try and much easier to stabilise and find the right dose than NDT or T3. Am I right in thinking you haven’t tried Levothyroxine? If not, it would be worth considering.
However if you continue with NDT look to make gradual adjustments - there is no quick fix, sorry. If you think you might be better off all thyroid medication and you have no medic informing your dosage, I think that may be the best place to start, even if you later have to introduce some hormone treatment gradually later. Either way you may be in for a bit of a rocky time as your hormone levels may be a bit disrupted. This is not a good time for applications, but in my experience there never is a good time for thyroid instability. Good luck.
Hi Aurealis, thanks for looking through my old posts—Yes I've never tried it as my first tests had T3 out of the range low, so I thought NDT would be the way to go.
I think you are right and I would like to get off and think my body may be able to recover, it was so hard going 3 to 2 grains, I was so lethargic and depressed for 2 weeks, I couldn't do my interviews/assessment centres for a new job.
I'm thinking of trying to phase thryoxine in, and then it would be easier to manage, and then maybe I could gradually come off, letting my TSH go up? As from my impression my results don't seem typical- above the range T3 and bottom T4?
I don't understand how my T3 is above range after reducing the dose, and I don't know why if my T3 was quite high why I felt so terrible for 2 weeks and had no heart palpitations or high blood pressure symtpoms? Could it be that in the morning before I took my 1.75 grains I am low T3, then it all kicks in?
I feel that I peak at times with the T3 and that the T4 is always low, so i'm always responding to an immediate effect, which doesn't suit me. I feel like I don't have a conversion problem and may be able to get off, as the last few years I was definitely subclinical with a TSH of 3.1
Bio. Your result suggest you are taking a little bit too much re the over range t3. The low T4 is a normal response to taking NDT or any T3 so nothing to worry about.
Your BP is slightly raised for your age but nothing to panic about. It is normal for me age 50 and I have seen some very high BPs as a nurse. I imagine the raised BP is a combination of you not having got the dose right and you also sound very stressed. A bit of mindfullness would help if you can find a nice buddist to teach. You young people are very driven these days. Schools are like academic sweat shops and unlike in my day universitys are a place where you are expected to work rather than just get drunk all the time like myself and my peers did. Do you have to apply for jobs now it sounds like you could do with a break to get really well and chill for a bit.
How did you come to start the NDT. You are suggesting it might be a mistake to have started it so knowing something about how it came about would be helpful.What were your symptoms and what are they now.
Was your vit D, ferritin, folate and B12 bloods taken. If so please post for furthur advice.
Levo is normally the first medication that people are given by the GP and lots of people do really well on it. If you have not tried it before it might be worth trying as generally cheaper and easyier to get. If you wanted to start it is best to start off with a low dose.I would suggest 50mg for six weeks followed by blood test and increase of 25mg. The blood tests every six weeks and increase untill you fell better.
It is a long windly road to get well ands much trial and error. I have tried a lot of different NDTs over the past five years. I am better than I have been inthe last thirty years now but still ajusting doses at times.
Asssuming you were hypothyroid when you started the NDT you will not be doing yourself any harm ad infact a lot of good. If you were not hypothyroid then you can just stop and will be fine. I would suggest however not stopping if hypothyroid as stopping can make you really quite ill as you need those hormones.
Hi Mandyjane, I really appreciate your thoughtful response!!!
Thanks for being reassuring, well I had come down from 3 grains so wasn't expecting these results, and don't know what to think.
Oh ok, so it is normal to have very low T4, aren't I then just responding to T3.
Well I am not super young- I am 23, and haven't really started full tie work yet, I had a year out when my health first blew up, then since graduating last year I have mostly been focusing on health. Haha well I think a lot of universities still have a drinking culture, my first year was a bit like that, but yes I totally agree with you—thanks for the support. I'm glad you had a good time, ok are you sure? 140+ seems high, I thought 120 is still highish, I got it down to 130 on this lower dose, so feel it is partly thyroid related, and also stress and not being settled in life. I really do need to heed your advice and try and relax, I do have an existential crisis every day with the health issues and not having employment and as many friends from illness and taking time off. But I did like competition before all this lol.
I think I am finally ready for a bit of competition and stress if I could sort out this thyroid issue.
Well I started it because I took finasteride when I was 19 for three months, which mucked me about a bit, for two years afterwards I had subclinical hypothyroidism and other medium health issues, and then after more and more stress my body suddenly collapsed, and then my T3 was well below range, and my TSH was 6, and I was having to wear 5 ski jackets in the morning in winter, my testosterone had also crashed well below the range, so I went on testosterone replacement therapy. And that fixed a lot of symptoms. I then went on NDT and I felt the best I had in years, and am grateful as I am able to do things again.
I have just struggled with getting the NDT dosage right, I think partly because my body has adapted and got over its collapse. That's why I'm theorising I may be able to come off, as I don't have an underlying disease, and I am guessing that T4 would be the way forward, as I don't like these unpleasant T3 stimulatory effects. I also am not sure if I am dosing it correctly, or getting the tests at the right times etc. I would like to be a pretty active young man, mentally/ or physically.
My symptoms before were lethargy, severe meibomian gland disease, low body temperature/very low heart rate
social withdrawal/ extreme anxiety/no confidence/memory issues bone cracking, no sexual function, testicular pain (I think this was all low testosterone and estrogen)
all the above went away, once I was on testosterone replacement therapy for a while. The symptoms I have now are different except I still have the eye condition, but not as bad as before. I think the eye condition is curable now as the underlying hormones are fine, I think it is a residual bacterial issue.
My symptoms now change and are due to what dose I am on. Mostly hyperthyroid symptoms, heart rate too fast/over stimulated, especially in the evening.
I am very grateful to be pretty much back to normal, the thyroid is a bit worrying as I feel overstimulated. I don't feel in control with it, it doesn't feel a smooth ride or how I used to feel. I am either lethargic all the time, or too hyper where it doesn't feel sustainable, and my heart rate and brain doesn't wind down in the evening.
Sorry, I'm not sure about those. I did have my vitamin D measured and it was quite low— but I think this is more the ranges haven't been adjusted yet, for the lack of sunlight in modern society. I started supplementing with it. I sporadically take a b12+folate complex once a week, but have no idea what my level is.
Yes I am quite keen to try thyroxine, as it makes sense, do you think I should completely scrap my NDT, or try and transfer over? Do you know if I should try and let my TSH rise?
I was initially offered thyroxine by the GP, but as my T3 was out of range initially and people seem to opt for NDT i decided on that.
Oh so you really notice a difference with different NDTs, like Armour and Thyroid-S?
I'm thinking it may be about how you split it, like maybe if I took 1.5 grains morning, .5 grain 4pm , .5pm 10pm I wouldnt get T3 spike? How do you take it?
I was hypothyroid, but somehow optimistically believe I can come off, I felt absolutely dreadful going from 3 to 2 grains and I don't know why so am put off going off cold turkey. As I need to be motivated to get a new job, I am thinking of transferring over to T4, eg grain of NDT, equivalent to a grain of T4 for 4 weeks. And try and get on T4 then try and taper off, letting thyroid not be suppressed, as going down from 3 to 2 my TSH is still completely suppressed, but somehow I am producing more T3.
Anyway sorry for long response, thank you for your detailed response, definitely food for thought, and I will try and meditate. I can't get hold of T4 for a while, as I am abroad for a week, I am thinking of going to 2.5 grains as I felt so unmotivated the last two weeks.
I take my NDT all at once but a lot of people benefit from split doses and I think it might help you to do this. I also take my pulse before I take my NDT and like to keep it between 80 and 100 if it goes over 100 I would not take. The pulse I find is a much better gauge than blood tests for dosing and I can now tell my GP what my blood results will look like based on this.
A BP of 120 is considered the gold standard BP. Presuming you are talking about the upper number so a BP of 120/80 indicates excellent BP health.Some people haveBP of 110/70 which is still very good and I think usually consistant with someone of a smaller build. Having 140/80 is still fine as far as BP is conserned but indicates stress. Some peoples measurement goes up just because they dont like having the BP taken or medical envirement. The bottom number is the one to be conserned about so 140/90 would suggest that you lack fitness, would need to keep an eye on it, perhaps have it taken every 6 months incase it get higher.If the bottom number hits 100 or more then GP montior more closely for a bit or even treat.
I would be very reluctant to suggest that you stop taking hormones. It sounds like you were very poorly without and stopping can trigger serious issues in hypo people. I was very poorly about a year ago as I stopped my hormones for a couple of motnhs at the suggestion of an endo and have still not fully recovered. I am convined that I was on the verge of a coma as I kept leaving my body which was weird.
Different NDTsdo affect people differently. I am knocked out by thyroid S but do well on nature thyroid or armour. I am best on thyro gold which is what I now take.It sounds like you are on the right NDT if you felt really well on it to start off wtih and it is just acase of getting the dose right. I would suggest 2.5 divided into twice daily doses, taking your pulse before hand to make sure it is not racing.
You need to take about 10,000 iu of vitamin D a day to get your vit D up to a good level and try some B12patches for a while. You might not be able to digest the B12 in tablet form. These vitamins and minerals are needed to enable you body to process the thyroid hormones correctly. If you dont have enough then the hormones dont get used properly and you can I think sort of over dose with the hormones as it hangs around in the blood rather than doing what it is supposed to do. So the vits are important.Thyroid treatment is quite complex and best not left to doctors LOL.
Meditation is a good idea but TM or Vedic is much easier to do than Buddhist/mindfulness. You don't want you TSH any higher than it is - 6 wasn't subclinical, it showed primary hypothyroidism and you had lots of symptoms. Low free t4 is usual when on NDT. I think you need the full range of tests TSH, Free t4 free T3, TPO and TG antibodies, folate, B12, ferritin and vit D, plus sex hormones and prolactin in case you have a pituitary problem.
One thing I'm not clear about. Did you leave your meds on the testing day till after your blood draw? I got the feeling you took your am dose before it as if that's the case it won't have been an accurate reading.
I think this must be a factor. Yes I took 1.75mg at about 8am, and my blood test was at about 5:30 pm, is that not right?, that's about 10 hours after a dose.
With my other tests, I took my A.M dose (70% larger) and P.M dose the day before, and then had the test about 8 A.M so 24 hours after my main dose.
This may be the explanation that makes sense as to why with my previous tests on 3 grains I was in range, and on 2 grains I am over the range.
I'm not sure which test is more accurate, I thought waiting 10-12 hours is accurate.
Your TSH would have been even higher if you'd had the test in the morning, but so would your T3. I thought your intro said you'd left 24 hours since last dose. it should be 12 for blood tests with NDT. Your free t3 (if it was free t3) and TSH test just don't go together. Eating also changes test results.
Ideally bloods should be tested first thing when TSH is likely to be highest if you are on Levo and no medication Clare than 24 hours before so take your meds straight after. On NDT is recommended that you get tested 12 hours after otherwise will be undure what is happening to T3. In both instances you need to be fasting and food interferes with the reading. As patients we need the TSH to be as high as it will go because we need enough medication to help us at the level. We need to feel good for the whole 24 hours, not just a proportion of it. Doctors don't think it matters but it does! So not taking your meds correctly is probably why you are getting unusual results.
This forum is run by Thyroid Uk and they have an excellent web site that explains such a lot of things, who to take you medication and testing is the best place to start. It then expands on that as the best time to take any supplements of any other medication so that your thyroid meds work the best they can. It's a lot to get your head around but it works and consistency is important to ensure wellness! So look and study and shout out if you find something you don't understand and we can help you with that. You may. E better starting again with Levo (T4). Lots are perfectly well on it though they don't have to moan on here, they are out enjoying themselves. On Levo you can also see if you are a good converter, on any form of T3 you can't. Do I would always advise starting on Levo as not converting well is a. Ommon problem and the treatment is easier to do and gives you time to learn more about how your body reacts. At the end of the day many of us find we need extra help and look into NDT or adding in T3. I was good for about 30 years but I have also reached the age of being menopausal and sometimes things go off track, at least you won't have that problem though some say there is a male menopause but probably more correct to say a shift of hormones as we get older. Thinking of your job hunting etc it's often easier to sort out Levo but read and digest the into on the web site.
Going from 3 grains to 2 was a mistake you should have reduced by one half only.
You have to be patient and stay on the same dose for 6 weeks before testing next time.
Leave of the NDT for 10/12 hours prior to testing which should be first thing in the morning on an empty stomach. The worst thing is to keep changing doses you body can't keep up, why should it?
Ok, I don't understand why I am over the range T3, I agree I would have been better of going to 2.5 grains, and I have moved back up as I felt so lethargic/depressed on 2 grains.
I did wait 10 hours before my test, so I am a bit confused. I would think that it was an accurate result, and perhaps my T3 is low first thing in the morning, before I take my main dose.
Was that a free T3 test or a total T3 test? Unusual ranges - what county are you in? High TSH suggest undermedication. If 24 hours after blood test, it suggests overmedication still, but TSH doesn't back that up. Do you take any vitamins or other supplments? Palpitations are caused by undermedication as well as over. A total T3 test is no use. Did you get TPO and TG antibodies tested? Do you have autoimmune thyroid disease? If you don't have an underlying condition (ie hypothyroidism) why are you taking NDT?
It is best to have a test taken first thing in the morning, as early as possible and before food and meds as silverfox7 suggests. This is the only way that you can get some kind of consistency between tests so that you can compare how things have shifted over time, or with a dose change.
But a test is only worth doing after six weeks on the same dose. If you really can’t achieve this at the moment it could be helpful to you to take your resting pulse rate (as Mandyjane suggests) at intervals through the day and record them as well as dose amounts and timings.
Incidentally, high fT3 does make you feel poorly so don’t be surprised about that, it is only a miracle for those who need it and who are able to adjust it to just the right level for them needs.
NDT is most usually taken in two doses, first thing and 6 hours later. Your suggestion of changing over to Levo is sound as this might give you a better feeling of stability than stopping everything. As you have a complex medical history could there be any support available from GP with this perhaps?
Good luck, it sounds as if you’ve made lots of progress with your health already.
But to update this thread: I have started a T4/NDT combo and feel a lot better on it, I don't get the heart palpitations, my only concern is sourcing T4 as it is quite expensive. I havebeen using uni pharma.
I do have hope maybe I can get off all medication. I am currently trying 50-100mg T4, 1 grain NDT, but little by little hope to be on only T4.
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