Hi I'm Gena. I became hypothyroid in 2011 after having my thyroid removed for papillary cancer. Since then my life has been a living hell. I'm currently on 175mg levo and recently had bloods checked because yet again I was beginning to feel lousy, (struggling to get up in the morning, severe fatigue, lethargy, aching joints, blurred vision, migraines), the list is endless. Unfortunately my levo can't be increased because my body can't cope with a higher dose. I've also just started on Fultium-D3, 800unit for bit D deficiency and 5mg folic acid. Can anyone advise on how long supplements should take before I start to feel a difference please? I feel like I'm fighting a losing battle :-(

10 Replies

  • Hi Gena, had the same feeling after thyroidectomy and being on Levothyroxine and T3 and Vit D, so changed to NDT Armour and feel much better. Had to see endo privately to change over. Might be worth considering. Good luck, Lizzy.

  • Thank you

  • I also have no thyroid and am on 100 and 125 mcg levo. I would love to try NDT but am scared as although my endo would not disown me!!! I will not get any support or advice.

  • Welcome Geena to our forum,

    You can get better and we have to read and learn in order to do so. Unfortunately we are kept unwell as the guidelines insist on levothyroxine only and that our TSH is kept in range. Unfortunately, again, usually we aren't given sufficient hormones to keep us well.

    My personal opinion and of a lot on this forum felt much better when T3 (liothyronine) was added to a reduced T4. Some of us cannot convert it to sufficient T3. I, myself, am on T3 only and am well now. Levothyroxine was not a good experience whatsoever for me, as it is for a lot of people.

    If you can get a print-out of your latest blood tests for your thyroid hormones from the doctor (we are entitled to copies of our tests). Make sure the ranges are stated as labs differ and post them on a new question.

    As jacqueline states she is much better on natural dessicated thyroid hormones (made from pigs thyroid gland and been in use since 1892 successfully). Many feel so much better. Doctors can supply on a 'named-patient' basis but they wont as they are afraid of getting a reprimand.

    If you read this Admin's Profile you will see a similarity in your conditions.

  • If you've not had a Full Thyroid Function Test done for a while, ask for one. It is T4, T3, Free T4 and Free T3. (free T3 most important as it's the Active hormone our body needs to function). Some hints:

    Blood Test: Have the earliest possible appointment . Leave 24 hours since last dose of levo and test as it may skew results and fast. Take levo after test.

    Take thyroid hormones on wakening and wait approx 1 hour before eating. Some foods interfere with medication. I leave 4 hours between hormones and supplements which I have at lunchtime. Some prefer bedtime dosing, in that case you must leave 2 hours after eating before taking hormones. If you've had a fatty meal it should be longer. Food can interfere with the uptake.

    Ask for Vitamin B12, Vit D, iron, ferritin and folate to be tested. They should be towards the upper range.

    History of one of our members:-

  • I haven't had a thyroidectomy, so take this with a pinch of salt if necessary. It seems to me that those who had a TT need to be on NDT. Why? Because your thyroid produces at least 5 things. T4, T3, T2, T1 and calcitonin (are the ones that are known about).

    Calcitonin, I believe, helps protect against osteoporosis. Endos don't know what T2 and T1 do so claim you don't need them.

    NDT contains all 5 substances that the thyroid produces for itself.

  • .rosetrees

    Would this also apply to people who have had RAI ?


  • I wouldn't want to say either way for certain. I've had neither RAI or a TT. Do you know if your thyroid works at all?

  • I don't think so rosetrees.

    Taking Levo and tried t3 unsuccessfully at the moment .

    How would you know if it was working ?

    As far as I know it was kaput completely after hyper and RAI treatment .


  • I'm sorry to hear of how unwell you are.

    800 iu daily Vitamin D is insufficient if you're trying to reach the optimal Vitamin D blood level. It is also insufficient for maintenance of the optimal blood dose, once you have reached the optimal level.

    Please look at the pdf statement of 2013 which was signed by 40 medics/researchers.

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