Advice re NDT

i recently added a post asking if T3 could be obtained privately or on prescription and got lots of helpful replies. Since then, I visited my dr and came away feeling like I'm just a bit of an idiot for bothering them. I explained all my symptoms, she advised my weight gain of 3 stone is just what I eat even though I was a UK size 8 prior to being diagnosed with undeactivd thyroid and have tried numerous diets and excercise without losing a pound, and never eat much to begin with, her response to my erratic periods is to book me in for an ultrasound even though I have no pain with them. my extreme tiredness she thinks is anaemia and advised me to up my dose of ferrous sulphate even though last iron bloods were normal. Everyone of the symptoms that I have since thyroid she completely dismissed and said I am within 'normal range' so it's not that but I still feel awful and now really not sure what to do, Dr advised that they don't log t3 but my free t4 level is 13.4 and TSH is 3.19, I think these are pretty good so I don't know why I feel so poorly. can anyone advise if these sound normal and I I can buy NDT without a prescription, if so does anyone know where? Can anyone help. Thankyou 😊

28 Replies

  • Cj, your GP's ignorance of hypothyroidism is profoundly underwhelming. It is however common for symptoms to be 'non-thyroidal' "because bloods are normal" and irrelevant and expensive tests to be ordered to cover up incompetence at making a clinical diagnosis.

    Your weight gain, symptoms and erratic periods are due to low FT4 and high TSH because you are undermedicated. The goal of Levothyroxine is to restore the patient to euthyroid status and this will usually be when TSH is just above or below 1.0 with FT4 >19.

    Is there a more clued up GP you can see at your practice who will increase your dose?

  • Thankyou so much, I actually felt like crying when I read yours and Jazzw responses, someone who understands how I'm feeling and that's it not all in my head. I will go back and see someone a little more understanding and let you know. should I ask a Dr re NDT do you think or wait and see if he increases my levothyroxine. I am taking 150 at the moment.

  • Cj, it's very unlikely you'll be prescribed anything other than Levothyroxine. GPs are increasingly told that T3 needs to be recommended by an NHS endo to be prescribed on the NHS. NDT isn't licensed for UK use and is rarely prescribed on the NHS.

  • So is there nothing I can do to help myself really if both NDT and T3 are not prescribed? I don't know what else I can do unless they prescribe both or one privately, I know it would cost the earth and I am not rich but I need to feel better and would pay to at least try it. Do you know if either or both are prescribed privately, thanks for all the advice, do appreciate it.

  • You can buy both NDT and T3 online without prescription, without the input of a doctor, and treat yourself. The people who use this forum are usually those who haven't done well on standard medical treatment for hypothyroidism, so we have to learn what we can and make ourselves better. If you want people to let you know where to buy NDT or T3 (from reliable sources) then write a new post, asking for what you want to know, and ask for replies to be sent to you via private message. Sources of prescription-only meds cannot be discussed publicly on the forum.

    I know how easy it is to despair when feeling so dreadful and suffering from brain-fog, but it is possible to improve your life. A book I can recommend that helped me to understand what was going on with my thyroid was this one :

    There is a Kindle edition as well as a paperback. I found the book gave me a starting point from which to build on in learning other stuff. It was very hard work to get it through a brain that wasn't working well, and I had to read and re-read, but it stuck eventually, and I've never regretted the effort it took.

    Don't forget that getting the right meds for you is just one thing you need to consider. You need to look at nutrients, adrenal health, diet, sleep... It isn't quick, but it can be done. :)

  • Thankyou I will check out the book, I am trying to improve general health also so this will help, Thankyou

  • Cj, a Levothyroxine dose increase will improve FT4 and will lower TSH.

    If you buy T3 or NDT online and self medicate you will also need to monitor FT3 via private thyroid tests from

  • Clutter, you have been so helpful Thankyou. I for once feel a little positive about feeling normal again, like it might happen for me. all of this info re testing yourself on any private medication I wouldn't have had any clue about so at least now I have a good starting point and also feel like I have some control back in my life. Thanks for all your advice, much appreciated

  • TSH of 3.19 isn't good - you're undermedicated. As Clutter said, is there another doctor you can see? You're not an idiot and your symptoms most definitely aren't in your head. I was practically bedridden the last time my TSH was that high - yet many doctors believe there's no problem until it goes over 5... :(

  • Thankyou so much, I actually felt like crying when I read yours and Clutters responses, someone who understands how I'm feeling and that's it not all in my head. I will go back and see someone a little more understanding and let you know. should I ask a Dr re NDT do you think or wait and see if he increases my levothyroxine. I am taking 150 at the moment.

  • Many of us have found that GPs can not be trusted with out health, furthermore many do not remember what they were taught in medical college.

    You've been given good advice and definitely worth following. You could try seeing another GP at the practice or insist on seeing an Endo. Do not let these people leave you ill.

  • E-mail me and I will let you know how to get NDT without a prescription. I am not selling it, I will just let you know where to get it from safely on the web and how to take it safely. I am taking it myself and I am a kinesiologist who has been studying thyroid problems for personal reasons but using this information to help others.

    Admin deleted email address

  • Hi could you help me

  • I agree with Clutter but I just wondered if you were taking your medication correctly. My apologies if you are but the other year I was interviewed by the pharmacist asking me the same question so it sounds like they have found it to be a common problem.

    If you take it in the morning, take with a full glass of water and wait an hour before eating or drinking anything other than water. Leave two hours away from other medication and 4 hours away from calcium and iron. It can be a bit of a juggling act but you will soon get into the routine. If you take your meds at night then make sure it's two hours since you last are. I've tried both ways and I felt slight better taking it at night but it was more inconvenient for me and I was more likely to forget.

    Hope you soon find a more knowledgable GP

  • Yes I take in the morning well before eating with water as advised by my pharmacist also. I would try taking it at night if that could improve things.

  • Could you try and persuade her to increase your dose of levothyroxine to see if you would feel better with a lower TSH. After all what is the purpose of having a reference range if you cannot find the number that suits you best. It looks as if, because of her complete ignorance, that might be your only approach. After all doctors are supposed to work with the patients as a team.

  • Hi, there is a team of Drs there so I could try another Dr, I think they may increase my levothyroxine if I asked them. They did before when I felt bad although my numbers were worse then. I, just not sure if more levothyroxine would help if it's just more of the same rather than a different drug altogether but I will try it to feel better, I will ask, thankyou for your help 😊

  • GPs seem to have got together to believe we all want to be high on thyroxine and B12 regardless of the fact that their inadequate treatment produces a vicious circle of worsening health and reliance on drug companies for relief of accompanying symptoms.

    I've been on Thyroid-S for three months (encouraged by other's experiences here) with good results - so less stressful not having to battle GP about dose :D

  • PS. Have sent PM re source - no prescription required:)

  • OR, they have become numb to hearing, "i feel sick still, what about prescribing me some cytomel?" like the slaughterhouse guy gets numb to doing his job (i love steak, so someone has to do it) but thats how i feel -like "run along little lamb, i have more lies to hand out to ALL the other patients in the waiting room, but hey, do you want a flu shot?" NO, i do not want a flu shot, i think they get a commission every time someone plugs that crap into our arm, i truly do.

  • I would feel sick as a dog with a TSH as high as 3.19 :(

  • It's a relief to hear these sort of things after a Dr just telling me, there's nothing wrong with your thyroid, your in the normal range, it's was like i was invisible and she was having a conversation with herself. I felt like standing up and shouting " you are not listening to me" I feel dreadful and I'm not a hypochondriac, as a child I had epilepsy, as a teen I had Crohn's disease, plus kidney stones I've had four lots of surgeries, I'm well now on those fronts but meaning I'm not new to illness, however she just said 3.19 is completely normal the same as most people's, it's not your thyroid! So frustrating, so it's good to know I'm not making a fuss about nothing and that there are other people who feel like I do on my TSH level, sorry to go on just so nice to talk to people who understand. Thanks for your reply .

  • It's really essential to have your B12 tested Cj. As you have Crohn's Disease (and intestinal surgery?), this together with thyroid disease would put you in two high risk groups of B12 deficiency through intestinal inability to fully absorb this important vitamin - best not to supplement as it will skew any further tests. It could also account for extreme fatigue and any other subtle symptoms you may have as thyroid disease/PA/B12 def. are often interlinked and symptoms overlap.

    Here are links and an excellent film below, which explain more: Page 2 - link to Crohn's Disease

    The above is. The latest BMJ research document, supported by many research papers. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

    " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

  • I eventually stopped seeing doctors and self medicated, because, mentally and emotionally, i just couldn't take what they had to say, i couldn't take the abuse anymore. They treated me like I was the problem...they blamed me for gaining 11lbs in 1 week, while laying in bed too ill to eat much more than a bit of soup.

  • I didn't know low ft4, caused symptoms.

  • Faith, no it doesn't but low FT4 usually means FT3 is low and that does.

  • i did'nt take the time to read every repsonse, but, when i understood after doing my research on this site that my body needed (NDT) NOTHING (after the mortgage got paid) and i mean nothing else came before buying that to bring back some of my quality of life. why would i have bothered to get out of bed anymore?

    and waiting for my t3 to arrive in the mail, was the longest two weeks of my life.

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