how many grains is too many grains?

Ok so i have been pondering this thing...with my recent blood test results posted in another post some have suggested another increase in my dosage. I have been on 4 grains now for quite some time and i am symptomatic although i put it down to menopause? :-( anyway how much is too much medication? say i increased the dose to say 4.5 grains daily.....is that ok? and for how long? do you just need to keep upping the dose? i dont understand its taken since May to get where i am ...okok i know I'm not the most patient person but just wondered...do you take it until your thyroid packs up altogether?

im kind og scared in some ways as I'm self medicating with THiroid and the GP doesnt have a clue...so kind go bumbling along and hoping for the best.

Haven't been so goo with my supplements lately so I'm getting that back on track now...

just wondered if there is a cut off point or do you keep increasing until the results come back ok?

20 Replies

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  • my husband and daughter are both on 5 grains of NDT

    sounds like your vitamin levels may be low and not helping you

  • One way of monitoring where you are at with your thyroid meds is to check heart rate and body temp. Years ago, docs prescribed NDT (there were no synthetic thyroid meds at the time) and monitored patients by tracking heart rate, body temp and blood pressure plus an alleviation of symptoms. Keep a log... nothing fancy. Note your dosage, heart rate, body temp and how you are feeling each day. General rule is... if body signs are still low or if they drop, increase your NDT by 1/4, 1/2 grain every two weeks or so. If body signs climb some above normal, drop dosage back by the 1/4 - 1/2 grain. Body temp seems to be it's highest about 3 - 4 pm in the afternoon... a good time to take vitals.

    If you find yourself taking a high dose of NDT or thyroid meds and you are feeling worse instead of better, your B 12, D 3, iron may be low which keeps us from optimizing our NDT dosage. Or..... adrenal fatigue may be a problem and needs to be addressed or..... you may be experiencing Rt3... a condition where the T 3 just isn't getting into your cells.

    ***Edit.... you are starting to approach the upper range of 'normal' with NDT (4 - 5 grains) so might be a good time to have some blood tests done even if you have to have them done privately.

  • How long is a piece of string? There is no upper limit, we need what we need. BUT, having got to 4 grains and still being symptomatic, it may be time to start thinking out of the box.

    First of all, if I were you, I would get some labs done. You need TSH, FT4, FT3, of course. Antibodies, unless you already know you have Hashi's. And, vit D, vit B12, folate and ferritin.

    If your nutrients are low - and testing those four that actively affect all things thyroid - gives you a base to work on. If they are all low, then other things are going to be low, too. And that could mean you have and absorption problems which will effect your thyroid hormone replacement, too. So, in that case, the place to start would be your gut - heal your gut before you add in any more NDT.

    And, if your nutrients are low, you not going to be able to absorb your NDT into the cells, and you're not going to be able to convert T4 to T3. So, I think, your first step should be to test all that, and find out exactly where you are. :)

  • hi Grey goose, so i dont repeat myself heres the link to my private test results taken last week...i had an iron infusion last year and my vitamin D is ok as is my B12 i would just like to know wether or not i should increase and to save faffing with splitting tablets should i just do 5 grains one day and 4 the next etc...?

    healthunlocked.com/thyroidu...

  • PS my average temperature is 35.6 i take it at the same time every day around 3pm...i dont know about blood pressure or heart rate, my blood pressure historically has always been very very low....

  • I think you should increase, your FT3 isn't even mid-range. Most people need it up the top of the range to feel well. But, with NDT, you can't do one dose one day, and another the next, because of the T3. With T4, it doesn't matter, because it's a storage hormone. But, with T3, you need a steady, regular dose. So, I'm afraid you're going to have to continue faffing around.

    So, you've been supplementing your nutrients, I take it. Which means they must have originally been low. So, you still have to consider an absorption problem, I think. Or a conversion problem. And, if it's a conversion problem, is NDT the right thing for you?

  • hi Grey goose I've ramped my grains back up again to 5 a day now to see how i go, if that doesnt work ill have to come back and ask you guys what next. I dont want levothyroixine i tried it before and i bloated out like a barrage balloon...NDT has been lot gentler and seems to suit me...

  • ps I have absorption problems with iron, and i take probiotics and ACV regularly...seriously I'm doing everything i can to make this work...and its all taken from advice on here

  • I don't doubt you're doing everything you can, not for one minute. But, if you have absorption problems with iron, you're going to have absorption problems with your thyroid hormone, too. Are you gluten-free?

    Taking 1000 mg vit C with iron, can help absorption.

    I wasn't suggesting you go back to levo, I was thinking more of T3 only. Have you tried that? Depends on your level of conversion, of course. Do you happen to have any labs from just before you started NDT?

  • somewhere yes but not sure where they are..its been all over the place..yes I've been gluten free for a year now..just been talking to a doctor (private) about my HRT (bioidentical) and she has may thyroid test results too she said if i up my dosage i will have heart problems...i say bring it on..ive had enough now

  • Oh, good heavens! That's just stupid! Your FT3 isn't even mid-range. It would have to be way over the top of the range to cause heart problems.

    No, she's saying that because your TSH is very low, and she's so ignorant that she still believes that TSH somehow affects the heart. It doesn't. The TSH is irrelevant, once you are on thyroid hormone replacement, unless it goes high.

  • i spoke to my regular GP ( begging for estridiol and progesterone blood tests for the HRT doctor...who insisted that i take my medications 4 hours before testing? WTAF??? before she will even contemplate reviewing my HRT...wow money spinner or what??) todays 15 minute telephone consultation was a miserly 75 quid ching ching.....(******)..

    anyway bless him the GP has agreed to the tests....he also said that i should lower my dose to 3.5 grains??? (from 5 that I've currently started......) he also spoke about the 'dangers' of being overmedicated! i said mate....im not showing any signs of being overmedicated! I'm cold, i have constipation, I'm sluggish i have chronic low mood.. hair dry brittle but nails ok...... etc etc.....that isn't a sign of being 'overmedicated' ??????......then went on to remind him of the iron deficiency...and the fact that after 12 months i managed to get my iron levels from level 4-11 and THEY THE DOCS said it was ok because is ws in range???? NHS ranged fringe 11-388....hahahhhaaaa!)

    in the end,,, PAID FOR MY OWN IRON INFUSION,,,,yes a mere 700 quid!!!......could he PLEASE begin to understand that i dont trust them??? he said that i should make a double apt to speak with one of them.....and that there was evidence to suggest that overmedicating could in fact cause heart problems.....(i was thinking ohhh Karen carpenter???)....

    i actually broke down in tears said that i was self medicating and that basically i had more faith in people similar to me etc.....and that i had an idea about t3/4 ...etc....that i had gone beyove and beyond the norm, id done the gluten free thing, take regular vitamins and now HRT at my OWN expense! even highlighted the fact that NHS GPs do not even consider T3/ T4 results which was madness!

    he agreed to the tests for the HRT but said he wants a double appointment to discuss thyroid...

    hes convinced that if i carry on ...on the dose I'm on ( started from 2 and now on 5 grains) he recons ill end up with heart problems....:-( I'm thinking bring it on love!! lol

    my poor hubby is terrified now!! ( i talk him though it all)

    as for me i have faith in these forums!! i lost my faith in NHS doctors a long time ago! i believe that as a group we seriously CAN change the way treatment goes.....ive never been one for giving in...ill fight to the end.....and il follow my gut...but most of all my heart!!!

    and yes i know that ultimately its up to me.....and i will not blame anyone if it all goes wrong! ;-) my gut instinct has never let me down so far!!

    thank you for being there!! just thank you!!

    yours sincerely

    k

    bioluminence xx

  • You are more than welcome, my love. The level of doctor ignorance is criminal! How can they truly believe that a low TSH means over-medication, when they have the other levels staring them in the face! That is willful ignorance! You cannot be over-medicated with an FT3 mid-range.

    I don't know, but I don't think I'd carry on with that private doctor, if I were you. She doesn't seem very knowledgeable, but awfully expensive! That's criminal, too!

  • Go by how you FEEL not numbers.

  • I agree with @greygoose, get your vitamins & iron tested, I found I had very low ferritin level & once I started taking iron there was a marked improvement in how I felt and this was before I had switched to NDT.

    I too am taking Thiroyd from thailand and my GP is clueless. She is now worried because my TSH went shooting down to 0.1 and she says I'm at risk of heart attack and osteoporosis, but I'm not sure that is true when it is caused by NDT. I'm trying to do my own research because she really knows nothing except NHS guidelines which only take in to account TSH and synthetic medication.

    I have built slowly to 2.5 grains and am concentrating on vitamins now as I feel fairly good, then i shall get more private bloods done to check T3, T4, ferritin etc.

    My understanding is that if you have Hashimotos (as I do I think) then you may have to increase dosage in future if your thyroid continues to be destroyed by your antibodies, there will be others on here that know more!

  • healthunlocked.com/thyroidu...

    these are the results from last week, private. I had an iron infusion last year and i take vitamin D every day plus B12, I'm getting some vitamin K and magnesium, zinc too....its a bore! but I'm getting back into supplementing...

    i just need to know if upping the dose is a good thing...several people have said up the dose...im symptomatic...nothing like was when i started in May but i can feel a lapse? if thats the right word? anyway i was going to up the dose by taking 5 one day 4 the next etc to save of faffing with splitting pills.

    according to my test results the antibodies look ok as I've been gluten free fro over a year now....so something is working eh?

    thanks so much for your help lovely xx

  • oh yes forgot to mention...my GP puts EVERYTHING...all of my symptoms down to menopause now....so tried to palm me off with antidepressants and pain killers.....

    high paid guessers and Tw@ts as far as I'm concerned ;-)

    I've got far more info from and trust the people here

  • brilliant ! follow your instincts your gut is rarely wrong!!

  • We are all individuals so we can't base ourselves on what others are taking but I don't think doctors take that on board and are easily freaked! I was fortunate as in the 1980'd I was started on NDT or extract as it was called then but changed to Levo after a few years as there was a strike and I could f get my meds. I'd also bednstarted on zinc and selenium to support this. I also did well on Levo for many years but my now I discovered I had an allergy to brassicas having. Even told I had IBS many years earlier do I took more vitamins though in hindsight only low strengths as I didn't eat many vegetables and I was finding a few other foods had me rushing to the bathroom!

    Fast forward a few years and what I have learned in here I started supplementing more and added magnesium folate after very low tests and Sam with B12 and also for balance a good Vit B complex. My weight had risen but so had my age so was t unduly worried though I was around 80 kg and having found some pregnancy notes I was 56 when halfway through my second pregnancy. So also tested for Vit D and was very low so added in K2 as well so she'd load of bits etc, may have missed the odd one out but I spotted a food intolerance test and found some minerals and vitamins were still low and I pin pointed my brassicas problem and also some other foods I'd noticed that didn't seem to like me! I would t tell the man beforehand any medication I was on or whether I did have food problems as I was sceptical of the testing and didn't want to given him any ideas! I had a problem with 142 things and before the test he said the highest he had come across was 20!!!

    The following week armed with stronger supplement I went on a cruise, ideal as I could try out new things without having to do the shopping and cooking. I must be the only person to come back from a cruise and have lost weight, mostly fluid and the trips I had selected were in the most energetic bracket. My son kelp saying could I manage it and I said yes, bed here before but didn't say 42 years ago. The Wright slowly drop and after 6 months I had lost half a stone without trying, not a huge amount but I had a better shaped body so looked a lot slimmer. I suggested to endo at this point about adding in some T3 but he said not as my T3 was riding and could do more, I was half way up the range now so after asking questions and back tracking on previous posts I decided to take NDT. After all I had managed it quite easily years ago from my basal temperature and keeping a check on heart rate but finding someone to put me on it was going to be tricky. My endo had retired but I heard the new chap was from overseas so I took the plunge hoping he would be more enlightened. My GP said can't condone but would so my bloods and endo was happy but no one had asked what I was taking or where I was getting it from. So on Thyroid S and doing very well but didn't find it easy with the dosing. Think got up to three and didn't feel quite right so endo suggested I drop the dose so saidcok and gave it a go and found good at 2, I'd missed my sweet spot and it explained why I was taking more and not quite getting there. I'm now on the highest FT3 reading I've ever known and taking 1.75 and 2 every third day! So I'm not saying I think you are taking too much, I started off saying we are all different but if you are ever told to try dropping it then don't dismiss the idea as that worked for me!

  • i have been on HRT for 3 months now as well and the private doctor that prescribed that said that that i may need to lower my dose eventually as the hormones kick in and start to do their work. I have to say they work as slowly as the NDT and i see little improvement but here is some improvement so i keeping on with it.

    Its miserable I've not felt well since 2012 really, I've been looking back at photos and stuff and I've seen a massive difference on how i look and feel the change has been staggering.....sometimes i think just give me a pill ill go to sleep and that will be that...life is hard enough without all this SHYTE going on....then other days i think ooh its not so bad...

    Im just totally HORRIFIED that for such a massively common problem doctors and physicians are so clueless....they guess and send you away with tablets you dont need...blaming menopause and depression......and treating accordingly...i refuse that rubbish now.......its only the ones who questions and fight back that ever get anywhere and its so frustrating not to mention expensive....iron infusion was 700 quid.....the supplements are hundreds and so are the proper private tests..... its unfair and the only so called 'free' prescription i get from the NHS is a box of vitamin D and now they've told me i cant have that as I've been on it over a year...i dont mind paying for it but i ask very little from the NHS and I've paid in for years....

    sorry thats my whinge over....im now on 5 grains and cracking on....cheers

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