NDT & LEVY combined

Hi

Just found this amazing site. So need to ask a question or 2

Had RAI over a years for graves. Started levythyroxine and have not felt well at all since. Tried all levels, up down etc. Bloods done and all ok...sometimes over...then meds adjusted etc. But so exhausted, as though I've ru a marathon upon waking up. Can't sleep well. Aching and pains etc. As well as very low mood wise etc.

So after a year. I asked that I try T3 med. but was told by consultant he is not allowed to prescribe it due to huge cost etc . Although the previous appt,with him 3 months prior he did want to start me on it then but I said no and panicked etc as gaining weight even though I'm good with food and I was exercise. Now I. Not so much as so tired.

Consultant is writing to doc and asking is he will prescribe....still waiting but I know it will be a no.

So ordered thyroid S and started today. With consultants blessing and doasage advise. 75mg levythyroxine and 1 grain of thyroid S to start.

Is anyone on both levy and NDT, of so how are you doing with

I'm so fed up of feeling like this. I have no life as such. I work then go to bed. Get up work and go to bed. Even though I can't stay up as so tired.

A,so have back problems so laying down is better than sitting. As cannot sit for long with pain. MRI result pending on that too.

Cheers

Sharon

8 Replies

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  • Welcome to our forum Sharon,

    You are amongst people who've had similar experiences to yourself.

    Now, you can learn how to improve your health.

    One of our Admins also had Graves was not good on levothyroxine alone but with the addition of T3 . Her name is Clutter and she might well respond if she sees your post.

    I don't know what your original dose of levothyroxine was but 1 gr of NDT is around 100mcg of levo (some people might find it slightly lower). So, you are taking around 175mcg of thyroid hormones. If you were on 175mcg of levothyroxine that's an equivalent combo - NDT/T4.

    When you go for your next blood test it should be the earliest possible and fast, but you can drink water. Also allow 24 hours from your last dose of levo and the test and take it afterwards.

    Thyroid hormones should be taken on an empty stomach, usually morning, with a full glass of water and wait for approx an hour before eating. Food interferes with the uptake of hormones.

    Some prefer bedtime dosing, in that case you must have last eaten about 2.5 hours previously.

    I hope your health improves with your new regime.

    (I am not medically qualified - I had undiagnosed hypothyroidism for a long time but am well now thanks to Thyroiduk.org.uk).

    Always get a print-out of your blood test results with the ranges for your own records and post when you have a query to enable members to comment on them. :)

  • Thank you xxx

  • I'm glad Sharon has posted this as my story is almost exactly the same. I don't have my blood results but I'm told they're in the middle of the range so they're fine. I'm on 100mg of levo. I also have pernicious anaemia and self inject

    However I've had a constant headache for 8 weeks (not usually a headache person) and all serious stuff ruled out by CT scan and ophthalmologist. So I'm back to trying to figure things out myself. I'm beyond tired and even the b12 doesn't seem to help anymore. I have achy calfs and pains in hands/thumbs which the rheum says is Osteo arthritis.

    Could my thyroid be off even though tests say fine??

  • Blood tests only give the results - they don't say anything about symptoms the person has/still has. The only way to relieve symptoms is to have an optimum of thyroid hormones, sometimes levo does the trick and sometimes it doesn't so a trial of T3 added to T4 might work for them.

    Some people only get better when on NDT (which doctors wont prescribe due to the Guidelines) others T3 only. I tried several NDTs myself, so it can be a bit of a long journey but, when you get to a dose of whichever suits it's heaven. No pains/aches/insomnia etc.

    Why they have to let people suffer (mainly women and maybe those on the BTA are mostly male who don't have a dysfunction of their thyroid gland so have absolutely no understanding how very unwell patients can be (men included in this).

    One person committed suicide and foretold her story for the Coroner to read the reasoning behind the decision and it's awful that she was driven to such an extreme action.

    So you have to request a new blood test. The very earliest possible and fast. Allow 24 hours between your last dose and the test and take it afterwards. Always get a print-out of your blood test results with the ranges (these are important for comments). Never accept 'fine', o.k., 'normal' etc when you still have symptoms. Doctors are referring to the test itself and not listening to the patient who has symptoms despite being on levo. One doctor, now deceased, he was a Virologist became involved with hypo due to the guidelines and people not being diagnosed and said:

    His research has also extended to the clinical arena. Some fifteen years ago he was asked by colleagues to see patients who were considered to have myalgic encephalopathy or chronic fatigue syndrome or post viral syndrome or post viral fatigue on account of his interest in virus disease. He noted that a number of these patients had clinical features of hypothyroidism but had ‘normal’ levels of thyroid hormones which would lead most workers in the field to reject a diagnosis of hypothyroidism. Dr Skinner has since treated and returned to health many patients who were clinically hypothyroid but had normal thyroid chemistry and has reported these results in a preliminary paper entitled “Clinical response to thyroxine sodium in clinically hypothyroid but biochemically euthyroid patients”. He is disappointed that many doctors have little enthusiasm or will to examine this critical shortfall in patient care which in part motivated his book “Diagnosis and Management of Hypothyroidism”.

    This book was written to draw attention of the medical profession to a major faux pas in the care of patients with hypothyroidism. This arises from the inexplicable refusal of the medical profession to recognise that patients can suffer from hypothyroidism when the thyroid chemistry is deemed to be ‘normal’ if the free thyroxine or the thyroid stimulating hormone lie between 95% reference intervals. There is a further problem that when a patient is diagnosed as hypothyroid many patients receive too low level of thyroid replacement through servile reliance on thyroid chemistry with (often) cavalier disregard of how the patient feels accompanied by an implicit and bizarre belief that a level of thyroid hormone is a better index of wellbeing than the patient’s own view of his/her wellbeing.'

    worldthyroidregister.com/Go...

    For Dr Skinner's viewpoint he was hauled before the GMC many times and it wasn't his patients who complained as he treated patients as he was taught as a medical student, i.e. symptoms foremost.

    So, you may well need an increase as you are taking 100mcg. If you had no symptoms that might be o.k. but the usual dose of NDT (before blood tests) was between 200mcg and 400mcg. Follow advice above when your next test is due. The aim is a TSH of 1 or lower or suppressed, whichever makes you feel well and/or the addition of T3.

  • Thank you so much. I'm not really familiar with hypo symptoms as I've always been hyper but I'll look them up and read up on what you've mentioned above. Thanks again.

  • Hi - I started on ThyroidS 7 days ago but I feel better on 50/75 Levo. so I now take 50 levo and 1 tb. ThryoidS which contains a small amount of T3 and feel OK so far. Will keep monitoring the situation . Jax

  • Many many patients after thyroidectomy ...my husband included only regain their health when on solely NDT

    So my advice is switch over yo just ndt very carefully and be patient because it takes time to heal the tissues before you feel really well

    For my husband after going nowhere on levo and then levo and t3 and then t3 alone NDT was a miracle and he will never ever agree to return to synthetic meds and he is 73

  • That's very good news and am glad husband is now well. Just goes to show that sometimes we do need to try several types of thyroid hormones.

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