Hey there, new to site and on a learning curve !

I was diagnosed with Graves in 2004/5 and had RAI uptake the following year -

Never felt any better but thought, at 60, maybe this was as good as it gets -

These past 4 years have seen me in an ever decreasing circle of wellness -

Requested NDT but doctor refused - very sore dry and burning mouth and tongue,

various sicca systems referred to hospital late 2015 - low ferritin diagnosed -

colonoscopy ok - endoscopy cancelled - I had no saliva with which to swallow -

poorly tolerant of iron tablets - after 3 months of continuous loose bowel decided

to supplement myself - eating whizzed down liver for breakfast plus Spatone liquid iron - am now at 45 and will build up to reach target of 70

Believe I have low stomach acid, hence the anaemia, so am supplementing here also,

am also starting mutli-vitamins since I believe, with the difficultly I have had eating

anything, there is a very good chance that my whole vitamins and minerals are out of

whack - true, they maybe within range but for somebody who is hypo within range

is not good enough !

Am reading and learning so much, thank you for this site -

It takes time for things to resonate with me, but slowly, slowly, I'm coming out of

the cul de sac I seem to have found myself in !

Many thanks for being around

14 Replies

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  • I only got well when I discovered Thyroiuk.org.uk before the forum began so it has been a godsend for many of us that we can ask and get a response from members who've had similar quite quickly.

    You take levothyroxine with one glass of water when getting up and waiting about an hour before eating. Or you can take it at bedtime as long as you've last eaten about 2.5 to 3 hours previously. Because if female our digestion takes longer and if hypo longer still.

    My personal opinion and I still have my gland I believe that anyone who has their thyroid knocked out altogether should have some T3 added to T4.

    You are right about low acid too and because sympoms of high/low are so similar doctor are apt to prescribe antacids.

    You can either take Apple Cider mixed with juice or water (some say it should have the 'mother' in it) or Betaine with Pepsin tablets.

    scdlifestyle.com/2012/06/hy...

    If in the UK and doctor has not tested your vitmins/minerals ask for B12, Vit D (these are most important as they are pro-hormones) iron, ferritin and folate. We are usually deficient in all of them.

    Blood tests should be the very earliest possible, fasting (you can drink water) and allow 24 hours between last dose of levo and test and take afterwards.

    Always get a print-out of the results with the ranges for your own records and post if you have a query.

    Some members source their own NDT but no information is posted on the forum, only by private message.

    When your health begins to pick up and symptoms gradually resolve you are able to have a normal healthy life if doctor doesn't mess about with doses to keep TSH somewhere in range, instead of 1 or lower.

  • Thanks for your message, yes, I believe I've a slow build in front of me - it would seem that if the vitamins and minerals aren't at optimum levels - neither synthetic or NDT will interact fully at cellular level -

    As a matter of interest can you please advise as to the vitamins and minerals I need to concentrate on and the optimum levels needed for somebody who has

    had RAI ablation ?

    May thanks

  • SeasideSusie has responded but two of the important thyroid tests is Free T4 and Free T3 and even if GP requested (even on an occasion) the labs might not do them if they deem the TSH is o.k. This is a link and explains why FT4 and FT3 are useful:

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

    The most important thing is that you are given a decent dose of levothyroxine and as I said some T3 but, in the UK, doctors have been told to stop prescribing T3 but we can source some of our own but you'd have to put up a new post asking for a private message to be sent to you as no info re prescribed medications can be posted on the open forum.

    If newly diagnosed, usually 50mcg of levo is a starting dose with a 25mcg increase about every 6 to 8 weeks. Always take note of your pulse/temp (before beginning if possible) for your own records.

    Usually if hypo our temp and pulse are below normal and with proper doses they will rise but maybe not back to precisely what yours were before being diagnosed. We might never have know our 'normal' as we probably never took it as we were well.

    You can take both hormones (T4/T3) together.

  • Pennyannie,

    If you post your recent thyroid results and ranges (the figures in brackets after results) in a new question members will advise whether you are optimally medicated on Levothyroxine. Good levels of ferritin, vitamin D, B12 and folate are also necessary for wellbeing.

    If you are under medicated a dose increase may be all that is required or if vits/mins are low then optimising them will improve wellbeing.

    If you are optimally medicated on Levothyroxine then switching to NDT may be beneficial.

    Patients who have had their thyroid removed or ablated may not always convert T4 to T3 well and may require the addition of T3 via Liothyronine or NDT.

  • Thanks for that - my level of ferritin was 22 in Oct 15: this was the only one relayed over the telephone to me : started on iron tablets after colonoscopy ok in Jan 16 - unable to do endoscopy due to no saliva and a very dry sore mouth and tongue - ferrous sulphate tolerated for 3 months - ferritin increased to 29 - continual diarrhoea - decided to go it alone and sort myself out with liver everyday for breakfast - 6 months later my ferritin was 45 : that was in late November 16 and I know I've a way to go - appreciate everything you have written but have no current results to post - doctor suggested I get checked out again in May along with thyroid - from memory I have only ever had TSH readings so am guessing thyroid will fall ' in range ' as usual and I will be told' you're ok ' - the lab as a rule not producing T3 or T4 - I am hoping by this time my ferritin and other vitamins and minerals

    I am supplementing will put me in a better place and discuss - why did my ferritin drop - could it be low stomach acid - something associated with under management of hypothyroidism ? Being 70 this year I have learnt that low stomach acidity is quite common in the elderly so possible this was also, is, this cause ?

    I hope this makes some sense ?

  • Pennyannie,

    Ferritin ideally will be around 70 - 100. Low stomach acid is common in hypothyroid patients and that can make it difficult to obtain sufficient nutrients from food and patients will require supplementation to raise levels.

    You can ask your GP receptionist for the results and ranges of your last thyroid test and, if done, the results and ranges of vitamin D, B12 and folate and post them in a new question for comment.

    TSH only result will not indicate FT4 and FT3 levels. If TSH is all your GP will test it will be worth you ordering Blue Horizon Thyroid Plus 3 to check FT4 and FT3 or Thyroid Plus 11 to include some vitamins and minerals.

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

  • Yes, am thinking along the same lines - hoping doctor may agree with my line of thought and cover the full blood tests for me - however my low ferritin was considered ' only borderline ' despite my terrible symptoms - so- watch this space ! Any results that the surgery may hold are now old and will be only TSH - the low ferritin was found by the hospital I was referred to after approximately 2 years of complaining about the ever decreasing circle of wellness I seemed to be falling into - no exploratory tests were done by the surgery - just the 6 monthly thyroid check ups and they came back - " in range " - I just wonder if the labs work for the doctors or do the doctors work for the labs? Maybe I look too well to be believed ?

    Thanks for input - I'll keep reading up -

  • I thought that NDT was only available on prescription - so that's interesting -

    many thanks

  • Doctor's can prescribe NdT on a 'named-patient basis' but many wont as they have to take all responsibility.

    Thyroid hormones are only available in the UK by prescription. They can be sourced elsewhere as some countries don't require prescriptions and many of us have recovered only by sourcing our own with help from members on the forum.

  • Yes, I knew about the ' named person only ' arrangement -

    so, otherwise, it is through diverse means ?

  • Pennyannie,

    NDT isn't licensed for use in the UK so it is rarely prescribed on NHS. Most members using NDT have private prescriptions or buy on the internet and self medicate.

  • T3 is also known as liothyronine and it's not an NDT (natural dessicated thyroid hormones) that are the very original thyroid hormones. Even though we say 'natural' NDT it is a processed product made from pigs thyroid glands.

  • Just to add to what Shaw's has advised, most multi vitamins are a waste of money. There is usually very little of anything to be of benefit and they usually contain the cheapest and wrong form of the ingredients. Much better to get them tested and supplement what deficencies you have.

    You can get them done privately with a fingerprick test, usually part of a thyroid bundle, with Blue Horizon or Medichecks.

  • Thanks for that - yes, will look to have them checked in due course -

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