Still very sluggish

Hi all, can anybody shed a light on this problem for me. I started back on NDT, ( after a 3 month break of nothing ) 5 week's ago. Because i was really sick taking any type of NDT, i had to stop all meds. I have started back again in desperation on half dose five weeks ago, but still not feeling the brightest. I am on NDT Porcine 50 mcg. How long should I wait until i have my levels checked, and when should i up my dose. I am so desperate as i have tried all forms and they have not agreed with me, mainly stomach cramps and nausea so am suprised that by taking a lower dose i have had no symptoms so far.

Thank you all for the help you have been giving me. I am taking the dose around 4.00 a.m in the morning and eating around an hour later. I cannot sleep past 2.30 a.m in the morning so am unable to work. Please somebody help me understand.

Love to all my fellow sufferers. x

21 Replies

  • Three months ago on your earlier post - Jazz gave you some good advice about your Ferritin and other vitamins. Your response - you would look for your old results. Did you find them and what were they ? B12 - Ferritin - Folate - Ferritin - VitD ? Also any thyroid results if you have them....

    The vitamins and minerals need to be OPTIMAL for your medication to work well....

  • Hi Marz, all levels of ferritin, B12, Folate are great./ Have just upped my dose of Vit D, to 2000iu, as levels were not optimal . No, i cannot find any of my previous Thyroid levels and my GP is of no help. I also added high doses of B Complex, i think perhaps this may be why i am not having the usaual side effects from med's. Not really sure.

  • Did your GP tell you they were great ? - or did you have the results to take away ? You do not need your GP for your Thyroid test results - you can ask the Receptionist....

  • Here in Australia you cant get the results unless the GP gives them. The Receptionist doesnt have access to them. He just told me that my results for the Vit D were normal as was my B12 e.t.c

    He did say that my TSH was rather high at 10.5

  • Oh dear - that TSH is High - are you on treatment ?

    Sadly normal means in range - which isn't adequate for many....

    Sorry didn't realise you were in Oz - should have looked at your profile - ooops !

  • What is NDT Porcine - who makes it?. Your dose sounds 'extremely small'.

  • Shaws, its just made up by a compound pharma here in Australia with a script for Natural Desc Thyroid, Porcine based (pig ). Thats all i know

  • What is odd is the dose!

    Desiccated thyroid products are usually based on the old grain unit - which approximates to 60 or 65 milligrams.

    You say you are getting 50 micrograms. Which, if literally true, would be less than one thousandth of a grain. There must be something wrong - you might have misquoted the unit, or the supplier might be saying "equivalent to 50 micrograms of levothyroxine". You need to gain clarity in your own mind.

    If all you know is that someone sends you some tablets or capsules, then you need to find out more! Call them, email them, whatever you need to do to get full details including ingredients and T4 and T3 content.


  • I thought Recovered7 was on Thyrogold but maybe isn't any more?

  • Hi Rod,

    all it say's on the container, T4 50MCG Capsule ??

  • Recovered, click on the orange Reply tab underneath the post you are responding to and the poster will be sent alerts that you have replied. Helvella may not see your reply otherwise.

    T4 50mcg capsule doesn't sound like NDT. It appears to be T4 only which is the same as Levothyroxine. NDT contains T4+T3. 50mcg is a starter dose and unlikely to bring TSH down to just above or below 1.0 which is comfortable for most people. You should have had a blood test 6 weeks after starting T4 as you will almost certainly need a dose increase and should have a follow up blood test 6 weeks after any dose adjustment. Leave 24 hours between last dose and blood draw.

  • It sounds exactly like that, Clutter, levothyroxine only. This isn't making much sense... :-(

  • I am really confused ???

  • Recovered7, check your prescription with your GP when you have the blood test.

  • Hi Clutter, I am responding to my initial ask for help several day's ago. I did as suggested and made some inquiries as to what on earth I was taking as It was supposed to be NDT derived from Pig. I have been so upset and angry to have discovered i was never given what i paid and asked for from the Compound Pharmacies. Have been in tear's as i have been struggling for three year's with not much of a response, ( or a severe reaction ) to all and everything I tried. I did have one good response once, but this made me to sick to continue using. I have just discovered that i have been paying $107.00 for an inferior product which they have been made to feel embarassed telling me is a synthetic form, i was told it was pure NDT ?? I have been lied to and cheated. I was very angry. Could you please give me some help or guidance as to what dosage i should ask for as my GP as no idea about the conversion guidance for this. I have finally found somebody to make me up the proper NDT.

    Thank you so much, i feel you have saved me from insanity.


  • Recovered, have you been prescribed T4 because of the previous difficulty you had tolerating NDT? NDT doesn't suit everyone and perhaps you will do better on T4 only? 5 weeks on 50mcg is time enough for a blood test to see whether dose needs increasing which you should do whether you decide to stick with T4 or switch to NDT.

    Commerical brands of NDT like Armour and NatureThroid contain 38mcg T4 and 9 mcg T3 in one 60mg tablet which is bioactively equivalent to 100mcg T4 according to the manufacturers but many users find the equivalence is probably nearer 75mcg T4.

  • Hi, I am so very confused, and teary. Nobody has the right to change your script or medication without Authorization ,regardless. I have reacted to all Compound Pharmacy script's, some more than others. The only product that never gave me a negative response was, "Bovine". Unfortunately, this did nothing for me according to blood test results and they way i was feeling. I was taking up to 5 tabs a day in the morning with not much response.

    Do not know where to go from here. except trying another Compound Pharmacy and making sure I get the correct product ?? if this is possible. To think this Pharmacy even suggested I take this stupid chemical capsule with apple sauce as would do when ever i eat Pork. I feel such an idiot as they said it would help me digest the porcine . I used to be a Nurse, but feel as though i am now an idiot as have been unable to work for over three years due to poor health.

  • Recovered, In the UK pharmacists dispense the medication prescribed by the doctor. If it said Levothyroxine on the prescription that is all that can be prescribed and if Levothyroxine was not available nothing can be substituted, the patient would have to get a doctor's prescription for any alternative.

    You mentioned in your opening post that you aren't experiencing the problems you had on NDT previously. It might be worth continuing on T4 to see whether you continue to feel well on increased doses of T4.

  • Hi Clutter,

    I haven't been feeling well which is why i posted the article. I will just have to find some other way around my problem . Thank you so much for your support, i really do appreciate you all so much. xx

  • I am not as knowledgeable as others so can't add to what has been said above but I had huge trouble with all forms of replacement and now take NDT but had to increase very slowly over a long time. One Dr (sadly no longer with us) advised me to try a small dose of NDT in the evening as he said it helps some people sleep. I take 1/4 grain at 5pm which really did the trick for me. I do not know how that equates to your product/dose though. I found later than 5pm and more than 1/4 grain made things worse though as with everything else I am sure we are all different and it seems to take time to find what works. Hope you feel better soon.

  • Hi debjs, thank you

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