I am new here and really need some help...reached the point where cannot carry on taking levothyrozine. So afraid but want to change to NDH

Hi all,

since total removal of thyroid in 1992 due to papillary cancer my life has been hell on levothyrozine. I have visited this site in the past and gained some knowledge but as i am aging the persistent mental fog and inability to comprehension things seems to be getting much worse. Over past few weeks i have had persistent insomnia Over the years the labels i have been given by GPs have increased but the side effects of levothyrizine have been ignored and its reached a point where i am at my wits end.

Having lost all faith in the NHS I never go see my GP anymore....hey am sure they have got me labelled as an hypochondriac.... but i do keep endo appointments. Why I don,t know? Now i really have to go for it a come off the thyrozine and opt for NDH.

However I do have some concerning questions I need answering:

1:How is it determined as to the dose of NDH i should take? (TSH to be suppressed to a range of less than 0.1 due to papillary cancer)

2:Who monitors my TSH levels should I decide to self medicate with NDH?

Few months ago along with thyroid function test by endo doc i also had a thyroglobulin test showing results as: thyroglobutin as less than 0.1 and antibodies at 15. What do the results actually mean?

8 Replies

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  • Dragon,

    How much Levothyroxine are you taking?

    Do you have FT4 and FT3 results and ranges as well as TSH which I presume is suppressed <0.1?

    If you decide to self medicate you will need FT3 testing to guide your dosing. It is recommended that FT3 remains within range.

    Thyrooglobulin and thyroglobulin antibodies are used as 'cancer markers' post thyCa surgery. TSH <0.1 is good as it means there is very little thyroid activity to potentially stimulate any remnant cancer cells left over from surgery and RAI. Thyroglobulin antibodies <20 is also good.

  • Clutter

    thank you for your helpful reply although it is very confusing to me and seems like a daunting task due to the fact of having to ask my GP for the tests you suggested. Trouble is I have been diagnosed with mental health issues over the years and treated for them, but I have come to suspect and realize that such mental health issues were attributed to the removal of my thyroid in 1992.

    I would not advise anyone to do what I have done which was to stop taking the medication for the mental health issues I was told i had. Admittedly, I do have thyroid related depression, anxiety disorder, insomnia which i fully accept and own. Of late i have become aware of pushing toxic people out of my life because I become so stressed in their presence. Upon pushing people away due to my stress levels around them increasing so much I have become more isolated.

    Of course I assumed my behaviour was due to simply being depressed. No this was not the case. Self preservation was the driving force behind my behaviour..... at all costs I simply sought to alleviate high stress arousal around certain people which of course was due to elevated cortisol and thyroid problems. The blinkers are now off....thanks to knowledge i have attained from everyone on Thyroid UK!

    So going to see my GP and requesting the tests you suggested will be very stressful indeed. GP fobbed me off for far too long and saw me as a mental case and paid virtually no attention to thyroid related problems because thyroid readings were classed as normal. No wonder I have no faith or trust in GPs. God how angry I am. Not one for self pity, I could cry for myself. My heart goes out to all people with thyroid problems who have the misfortune of being ignored or fobbed off by the medical profession who claim they know best.

    Sorry for the rant Clutter but I think it was needed to bring me to my senses. By the grace of God i am going to list all you advised and request those tests from GP.

    So grateful to you....many thanks.

    WATCH THIS SPACE!

    Oh just thought of something. I am in the process of making a complaint against GP due to the fact that I had a ECG done by her over 18 mths ago, which revealed that I had had a silent heart attack. No follow up treatment what so ever.

    Do you think i should go ahead with the complaint and still go and see GP with my request for the tests you suggested?

    sincere thank you for taking the time to reply to my post.

  • Dragon51,

    I would make the complaint because you should have been advised about the silent heart attack and advised about any lifestyle or diet changes you may need to make. If there is another doctor you can see at the practice it may be worth switching or even changing practice.

    Being thyroidless you must take some form of thyroid replacement. NHS will only prescribe Levothyroxine. Some people are advised to suppress TSH to avoid recurrence of thyCa. If you were told this you must resume taking Levothyroxine as soon as possible because without it your TSH will become very high.

    Some practices can only order TSH and FT3 is rarely tested in primary care. If your practice can't or won't order the tests you want or you don't want to see your GP you can order private thyroid tests to check TSH, FT4 and FT3 via thyroiduk.org.uk/tuk/testin... If you post the results and ranges in a new post members will advise whether you are optimally dosed.

    NDT is not licensed for UK use so if you want NDT you will have to source your own and self medicate. You can write a post asking members to send you private messages where to source NDT. If you say how much Levothyroxine you are taking members will also advise how much NDT to take and how to transition. In the meantime, please resume taking Levothyroxine.

  • Hi and welcome to the forum

    Dragon, as you are new and haven't posted any results of current labs it would be best to see about obtaining new results. Members would need this information of course in order to give you the feedback you need to move forward with your preferred treatment plan.

    Ask your GP to test TSH, free T3 and free T4, TG and TPO antibodies, as well as ferritin, folate, Vit D and B12. I understand that free T3 is often not tested however so if you can't get it consider going to on of the private labs posted on a link on the Thyroid UK site (Medichecks offers discounted rates every thursday).

    Blood tests need to be first thing AM after fasting (water OK) and no Levo for 24 hours prior. This gives the most accurate results.

    You will also need to post your current dosage of levo(?). Collect all this info and create a new post with details listed line by line (with ranges posted in brackets).

    You are at the right place for support and feedback if you are ready to become more proactive about taking charge of your treatment.

    X Rusty

  • Hi Rusty

    thank you for the insightful reply. Sorry I sent a somewhat long post to Clutter which was meant for you. Hope Clutter is not too perplexed.

    Going to request tests from GP as suggested by you.

    Many thanks Rusty

    Hug x Dragon

  • Hello Dragon, I had partial thyroidectomy for cancer and was very unwell afterwards too for many years. I had the same reaction from docs until I just kept booking 10mins appointments with them and saying I was going to do that until they helped me sort things out. Eventually got some useful referrals. The things that have helped me have been finding a levothyroxine that suits me, some made me very sick. Making sure I'm on the right dose. Getting my vitamins optimal and taking selenium and magnesium and changing my diet to a low carb, high fat diet. I also take apple cider vinegar whenever I get acid reflux which is not very often these days.

  • Insomnia may be due to low vitamin D and as a result of low vitamin D, B vitamins can be low too.

    See this interesting article

    drgominak.com/sleep/vitamin...

    When hypo we tend to get low stomach acid, this leads to low nutrients.

    If you have results for vitamin D, folate, ferritin and B12 post them here.

    If not ask GP to test, or if they are unhelpful you can do full private tests (very many of us on here do) This would double check antibodies

    thyroiduk.org.uk/tuk/testin...

    Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw.

    All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

    If taking vitamin B complex, or any supplements containing biotin, then need to remember to stop taking 3-4 days before any future blood tests. Biotin can falsely affect test results

    endocrinenews.endocrine.org...

    Increasing stomach acid using Apple cider vinegar or Betaine HCL is often posted about

    thyroidpharmacist.com/artic...

    Many after thyroidectomy need some T3 (as do many with Hashimoto's too) but NHS refuse to acknowledge this, though there are endocrinologists who do understand

    You can email Louise at Thyroid Uk for list of recommended thyroid specialists- some are T3 friendly

    Louise.roberts@thyroiduk.org.uk

    Lastly look at testing for DIO2 gene variation

    thyroiduk.org.uk/tuk/testin...

  • Put simply, if you feel rotten of levo, then you need to do something about it. You have put up with it for 25 years, I gave up with the docs after a mere 8 years.

    Yours is associated with cancer, mine was a benign multinodular goitre so my case is simpler than yours. But I simply stopped taking levo one day and the following day started on 2x grains of Thyroid-S. I felt much better straight away, not fully better but vastly improved. I have no idea what my blood results were before the change. To be quite honest I couldn't care what they were.

    It is probably in your interests to follow the advice of others who know a lot more about levels of various products in the blood that I do, but you should improve when taking NDT.

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