Thyroid UK
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Seeing an Endo and might be in trouble so please help

Hi, i shall give you the background to this first. I saw the new ‘Advanced Nurse Practitioner’ at my surgery as I had mild swelling in my lower legs she sent me for blood tests straight away! Now, I do have an under active thyroid and have been self medicating on NDT for years, she said that they were as well to test my Thyroid function at the same time, I explained that as it was the afternoon and I had already had my thyroid (Levothyroxin as the doc doesn’t know I self medicate) so therefore it would give a false reading, nonsense she said. So it goes without saying that after a reading of: TSH 0.02 & T4 14.9 I was called back and told they would have to reduce my Levothyroxin, I fought this and she agreed to do another blood test in the morning before I take my medication, so the reading after this was: TSH 0.07 - range 0.27 - 4.20, Serum free T4 9.2 - range 12.00 - 22.00 & Serum free T3 3.5 - range 3.90 - 6.70, now I didn’t take my NDT the day before or that morning and I have recently taken myself down to 1.5 grain from 2 grain. Anyway she seemed to be very alarmed about these readings even though I feel just fine and told her so she has now arranged for me to see an endo on the 14th of May at the Diabetes Centre 😟 at my local hospital, it says the name of the endo (who I can’t find any info on) or a member of the team! Now before I go on this merry go round what do I do? Do I admit to self medicating, the ideal end result would be to get a prescription for NDT in this country preferably Efra which I felt very good on, presently I am on NP Thyroid cause I can’t get Westhroid any more. I used to see Dr Thierry Hertoghe in Brussels so am very up to date on supplements and vitamins just can’t afford to see him anymore. Any help and or advice any of the members can give me will be greatly appreciated, sorry for the length of this post and I hope I have given all the info needed

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You are not committing a criminal offence by taking NDT. Just tell them you are and you are well due to it as it suits you far better than levothyroxine.

Also tell them that levothyroxine is T4 alone and the blood tests were invented for it alone so yours will not be compatible at all. The best way of judging your dose is how you 'feel' i.e. well (eventually) and no symptoms.

Also tell them it is giving you ALL of the necessary hormones your thyroid gland would have produced, T4, T3, T2, T1 and calcitonin and you feel that the calcitonin itself can also help your bones at the same time.

Don't let them fob you off with science. Tell them that NDT has been used safely since 1892 without blood tests for diagnosing, and people seemed to be better off as the doctors diagnosed by clinical symptoms alone but nowadays they know none.

Doctor John Lowe only took blood tests for diagnosing and thereafter it was all about how the patient felt and doses were increased gradually. i.e. 1/4 tablet every 2 weeks until symptoms were relieved.

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Oh god thanks for that reply Shaws, I think I was born with a guilty conscience . It was my TSH level that the nurse went slightly spastic about ifdo you know if that’s a problem? Thanks

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You are also purchasing your own.

Until a few years ago we were also given a trial of NDT on the NHS if not recovering on levo and some also got T3 added to T4 and both have been withdrawn. T3 without notice and leaving people high and dry with the option of Levo alone.

So I would imagine more and more hypo patients will be attending the GP more often, or Endo, but not getting much joy but, at times, some have been told their symptoms are nothing to do with hypo but are given a prescrip for it.

No doctors know any of the disabling clinical symptoms in these 'modern' times but before blood tests etc we were given a trial of NDT according to symptoms. No blood tests, no numbers and all about the relief of symptoms. Therefore if we are on levo and TSH is within range they will tell us it has nothing to do with the thyroid gland but will give 'extras' for the symptom. Big pharma thus gets more and more profits because if levo doesn't work for some people they have to have 'extras', ie anti-d's, pain relief, etc etc plus the billions of packets of levo worldwide.

TSH means Thyroid Stimulating Hormone which is from the pituitary gland. When gland is struggling TSH rises and warns us of a defiency. When we take thyroid hormones to optimal our TSH will be low, or very low and some need it suppressed. Those who've had thyroid cancer have to have a 'suppresed TSH'. They come to no harm I'm sure and may feel very well indeed due to high dose.

I am not medically qualified but if we, the patient, use our common sense we will be fine - keeping eye on pulse and temp if necessary (I don't now). The following was by one of TUK's Advisers (deceased) who would only prescribe NDT or T3 for thyroid hormone resistant patients.

web.archive.org/web/2010112...

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I think guilt is a hypo symptom! lol

If you're taking NDT or T3, your TSH is more or less bound to be suppressed. But, it just goes to show how little the nurse knows about thyroid, that she freaked out about your TSH, and not your under-range Frees!

Your TSH is low because you don't need it. It does not mean that you are over-medicated, or that you will have a heart attack or develop osteoporosis, it just means that the pituitary has detected a reasonable level of thyroid hormone in the blood, and cut back on TSH production. Which is perfectly right and proper. Do not allow yourself to be brow-beaten into reducing your dose, or giving up your NDT.

Personally, I would refuse to see an endo that worked in a diabetes clinic! That means that they are diabetes specialists, and will know very little about thyroid. Be very careful! :)

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Hi Greygoose, I have to say that going to see an Endo or one of his or her team at the diabetics centre does fill me with dread and think you are quite right about being careful so I will cancel this appointment. This however does not get me to my end goal of getting a prescription for NDT so that I can obtain it in this country instead of going through the palava of getting it from the IP who have reduced the makes you can get and tripled the price in the last year or so then of course there is the duty, it’s getting expensive to feel normal these days eh! Just another point actually, what do you mean about my under-range frees, how do I get them up? I only take NDT and haven’t taken thyroxine for the last couple of years am I doing it wrong, by the way I love your posts they are always so clear and understandable, thanks

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Greygoose won't automatically be notified that you have replied to her. People get notified of replies if one of their posts has been replied to by clicking on the Reply button on their post, or by tagging them, which shows up as their name in blue :

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To learn how to tag someone, see this link :

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Regarding you wanting a prescription for NDT provided by the NHS I think you have zero chance of getting one from an NHS doctor. See these links from NICE to see the attitude you are likely to meet :

evidence.nhs.uk/search?q=ar...

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What I mean about your under-range Frees is that they are far more important than the TSH! It's T3, the active thyroid hormone, that keeps you alive, and if it's low, that's what causes symptoms. Not the TSH. That is more or less meaningless once you are on thyroid hormone replacement. So, instead of freaking out about the low TSH, she should be freaking out about your under-range FT3, because that is far from normal. Most hypos need it up the top of the range to feel well.

I'm not suggesting that you should be taking levo, I'm suggesting that if these labs were done whilst taking 1.5 grains of NDT, 1.5 grains is not enough for you. If they were done whilst taking 2 grains, then I would be questioning your absorption and asking exactly how you take your pills. The FT3 should at least be inside the range on that dose.

NDT contains both T4 and T3, so taking the right dose will raise both the FT4 and the FT3 - and taking replacement hormone is the only way to raise them. The question is : what is the right dose?

But, I have to agree with HB, you don't stand much chance of getting NDT prescribed under the NHS. :(

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Oh you make it so easy to understand GreyGoose thanks. I have cancelled my Endo appointment and requested an appointment with a thyroid specialist consultant at the QE in Birmingham, it’s all gone quiet now! But you have got me thinking about my T3, weird I actually only noticed my low T4 hence my question about Levothyroxine, now I think I will be giving my doctor a few opportunities/headaches! Thanks again for your good advice it really is appreciated. I will ask the doc for a private prescription though....eventually 😏

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You're welcome. :)

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My TSH has been around <0.05 for years and years!! Very suppressed. My previous GP (now retired) was fine with it, saying he was trained to go with how patients felt, as well as test results. My Endo wants me to reduce T4 , though it's only 16 ( 8.0 - 22.0). And My GP is about to ring to go through all my meds too. I fear yet another battle today

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Hey Tara, very very good luck with that I fear I am about to go through the same with my doctor I just feel them gearing up, I have cancelled my local Endo (or one of the team!) and put in a request to see this top endo at the QE, just thought that the best way to handle this was to be a pain and then the doc might back off, best case I might just get to see someone who knows what they are talking about eh! Good luck again hope it goes better than you fear

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