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Thyroid UK
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My doctor refuses to prescribe armour and I am at the end of my tether....I have stopped taking Levo due to side effects and feel terrible.

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Have you considered trying Nutri thyroid? It's bovine not porcine and is sold as a supplement as it "claims" to be hormone free. I take it on the advise of Dr P.

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You have to be very careful when stopping your meds unless you have something to switch too. Lack of thyroid hormone affects everything in your body, particularly puts a strain on heart etc. I do understand, of course, that when you feel no better or worse that you don't see the point.

I would begin again until you source another thyroid gland hormone.

You don't give your profile. When were you diagnosed, what dose of levo where you taking. Can you get a copy of your latest blood test results with the ranges and post for members to comment upon them. If you can get a referral to an Endo, email louise.warvill@thyroiduk.org who has a list of NHS Endos/private doctors who may be sympathetic.

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Even something as simple as switching from Mercury Pharma to Actavis (or vice versa), or changing from taking it in the morning to bed-time could make a difference - hopefully in the right direction.

Doing without thyroid hormone is a fundamentally bad thing to attempt - though, as shaws says, it is understandable.

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I agree with that helvella I did it and my TSH soared from 0.07 to 29 and lots of acid influx even though I was still taking T3. Back on both now, still not right but not giving up.

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I have been struggling for the last eight years was hyper with graves eye disease then had iodine treatment in 2009 now hypo medication is making me feel like I mental health issues. My last test results 2 weeks ago before i finally stopped TSH 2.04 T4 14.3 T3 4.1. I am now fearful of getting ndt due to my doctor not supporting me in monitoring bloods. The doctor has refused to give me T3 which I have heard helps.

I AM LOST AND FRUSTRATED....

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Do you have the ranges? Your t3 and t4 seem low which will be why you don't feel well. It is possible that it isn't the type of medication you've been using that has been the problem but that you've been undertreated.

Just to clarify, do you feel like you're flailing about grasping at straws just desperate to feel better or is there a concrete reason - allergy, problems with fillers etc - for thinking your t4 isn't suitable?

As shaws said it might be worth trying again with t4 if only because only once you're properly treated with a high enough dose can you eliminate it as an option if you still don't feel well. Conventional meds are easier and it could make your life easier if they can make you well, but your dose needs to be right.

I totally understand your frustration and upset. I've been there myself. You're doing the right thing by taking control. Half the battle is feeling like you have options and are no longer at the mercy of people who are meant to be providing care but aren't.

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I did the same in Nov for 4 weeks and it worked in terms of detoxing 18 months worth of over medication but my skin is still flaking and peeling so I can only hope there won't be any long term internal issues.

I was better able to tolerate T4 when I resumed in Dec but found combining 25mcg of T3 has been very beneficial.

NDT isn't licensed for use in the UK but T3 is. Would your GP agree to a trial period of Levothyroxine plus T3?

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These are results as of 2 weeks ago...TSH 2.04 T4 14.3 AND T3 4.1...The doctor has also denied me T3 medications also.

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Your GP thinks (as many do) that keeping your TSH 'within range' is the right thing to do but for many, many of us, it is not. This is a quote from an article by Dr Toft, ex President of the British Thyroid Association in an article in Pulse Online. You can get a copy by emailing louise.warvill@thyroiduk.org and discuss question 6 with your GP. Also try a change of levo. Your TSH is too high:-

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

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Hello Shaws I am taking 100mcgs of Levo and 12.5 of T3 Cynomel. I have taken more T3 in the past and felt better, only reduced down due to the fact I had come off Levo and tsh soared to 29 from 0.07. Back on the Levo now 100mcgs and taking 12.5 Cynomel. TSH back down to 0.21. Would you say it is about the right level for combination? Not feeling any better.

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If you don't feel better, It would appear that your meds don't suit you.

The more I increased T3 and reduced T4 the better I became. I am, at present on T3 only and feel well. I also felt good on Nature-throid. I, for one, will not take levo again.

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Does your Endo give you the T3? I have bought mine privately, and seeing Endo (last saw 6 months ago), seeing her next week and will be questioning this although did mention previously. They do not seem willing, but I shall be taking all blood results with me. Just wish I could find a solution.

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Just be straight with her. Some do prescribe but some are unwilling to be brought to heel. I don't have an Endo now. I did and was prescribed 10mcg of T3 to levo. That's when I began to get better but I knew I wouldn't be prescibed T3 alone. I went to Dr S who prescribed NDT for me. My GP is prescribing at present but don't know for how long.

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If you don't feel well on your meds, something doesn't agree with you.

You say when you were on T3 alone (you had stopped levo) that your TSH rose. What dose of T3 were you taking then?

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I had got up to 50mcgs at one point but got atrial fibrilation so adjusted right down

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I wonder if Nature-throid would suit you as it is hypo-allergenic.

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Can this be bought privately?

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sent you a PM

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I could not tolerate levothyroxine at all, therefore I went a few years mostly without meds seeing different experts and trying every type of thyroid med and combination and for me the end result being purified levo and naturethroid.

I would write to your GP saying that he/she is denying you the right treatment. Many of us see private consultants and pay for our meds which is wrong I know. Please mention purified levo from Martindales, which your pharmacist can order, as it will more than likely be the fillers that don't agree with you.

Sue

thyroiduk.org

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Thank u for all your support, I am feeling really low and unheard....

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nattyg30 I feel for you. When you feel ready take a deep breath and start again. You will feel better when you are treated properly, and if you ask questions here you will find out how to make that happen.

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Where do you live

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Weston super mare

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I am in Bristol and my private endo prescribes Armour (on a private prescripition). If you are interested then please send me a PM and I can give you more details. In fact my GP was so amazed by my recovery that he now prescribes it for me on the NHS (I'm very lucky I realise) :) xx

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I have put in a complaint at doctors and they are going to discuss situation....

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Phone number removed for your protection.

Thyroid UK Support is an open group and as such all open posts and questions can be seen via any internet search engine...

Louise

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If you want to drop an email to the office - enquiries@thyroiduk.org we may be able to offer some more help - although the answers here are already very good.. :)

L

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On Armour Thyroid now, just started yesterday. I pray this agrees with me after all the struggles I have had on Levo..... Had to go private but if this works it will be worth it, my well being is important to me... Keep u all updated.....

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