Dr wants me to go back on levo

[Jackie101]

Hi, I've been on NDT for 3 months and got up to 2.5 grains.bive been on Levo for about 10 years. A TSH test revealed that I was 'over' so Dr told me to go back on to levo. I was on 150mg. I told her that I was on NDT but didn't tell her I've also been taking nutri adrenal - just one tab a day, which somehow seems to help me get to sleep.. So since conversation with Dr I've dropped down to 2 grains a day, but haven't gone back to Levo - I don't see the point. I'm worried that if I don't take levo, I'll get dumped by Dr in some way.. Any advice would be very welcome thanks

[radd]

Jackie,

When medicating T3 (in NDT) the pituitary gland may sense enough thyroid hormone and reduces output so your low TSH could be frightening your GP who thinks you are over-replaced ! ! ... They do not understand results gained after medicating anything concerning T3.

There is a small subset of patients who do not tolerate Levothroxine and if you are feeling better on NDT, then it is obviously suiting you.

Many do well on NAX and I have heard it can help with sleep although didn't experience this myself.

I am due to self medicate in the near future and have discussed this option with my GP who has agreed to monitor me and conduct TFT's. What reaction did you get from your GP ? ? .... There is literature that may help sway her mind...

[Ruthi]

So she wants you to feel ill, just in order to get a TSH that pleases her? What kind of exquisite torture is that?

If you are feeling better on NDT then just tell her that you aren't prepared to sacrifice your well-being unless your T3 goes over range. Its £29 for a private free T3 test from Blue Horizon if you can't persuade her to do the test - which she really should.

In the early days I had to offer to sign a disclaimer that I understood the risks of NDT. In reality its not that great a risk, but it seemed to focus their minds.

I bet drug addicts don't have to go through all this!!! And I don't think there are many GPs that will sack a patient for not following their advice. But a low TSH scares them. They fear you will die, and even more, they fear a disciplinary hearing. They need to understand that there is no way you will testify against them!

[JillOliver in reply to Ruthi]

Well said Ruthi! I am in a similar situation, with my endo having reduced my levo since last Oct down to what I class as almost a starter dose just to get my TSH to fall in that wonderful 'measurable' range! And all the time, I feel like crap, massive weight gain and absolutely shattered most of the time, falling asleep if it gets anywhere near 9pm, so frustrated as I feel like I did 15 years ago when I was first diagnosed! I am about to ring up the endo for lastest blood test results and I'll bet my TSH is still not in the range and I will be told to lower it again! So I am prepared this time and will kindly pass a message back to him, which will involve, amongst others, the word NO!

[6621 in reply to JillOliver]

hi jill, i seem to be in the same sort of predicament as your self. i have been recently told my thyroid is hyper active after it being under active for 25 years plus. levo reduced from 200mcg to 150mcg. i am new to this as i was fine on higher dose just until about one and a half years ago. its took them that long to discover it. perhaps you could enlighten me as i have no idea what NDT is. It was my daughter who told me all about tsh t3 t4 etc and i am finding it very hard to understand (brain fog ha ha) i forget what i am saying half way thro a sentence. I am sorry to drag you into my problems. I dont want to bother my daughter just now as she has just been told she has to have part of her cervix and maybe womb lazered away on wednesday. Your post just stood out for me. julie

[JillOliver in reply to 6621]

Hi there 6621,

Sorry to hear about your daughter! I must admit that I didn't feel 100% on 200 mcgs of levo, can't describe it, just didn't feel brilliant! But I felt pretty good on 150 mcgs everyday and yet because of this TSH range business and my TSH still not being in range I was lowered to 125 mcgs for 2 days then the 3rd day take 150 mcgs etc such a faff and the reward is to now not feel well again!

Right, NDT I am not on, so I am not an expert on it, but there is plenty of info on here to give you a good idea.

I am currently trying a combo of T3/T4 to see if it helps as someone pointed out on here that I wasn't converting T4 to T3 as well as I could be, though it would be useful if my endo would assist instead of not wanting anything to do with T3 and I know he will go mad again, when he knows I am taking T3 again as that also lowers your TSH and mine is already low as low can be!

[humanbean in reply to 6621]

NDT is "natural dessicated thyroid".

The first successful treatment for hypothyroidism was giving people bits of raw sheep thyroid to eat. It was discovered very quickly that (surprise, surprise!) people didn't like taking it very much, but luckily it could be dried (dessicated) and made into pills and it still worked. This all happened near the end of the 19th century, in the 1890s. The pills created were, effectively, the treatment patients now call NDT.

NDT was the only treatment or the main treatment for hypothyroidism up until (roughly) the 1970s. Then pharmaceutical companies developed levothyroxine, and doctors decided that, since it was new and not natural (and therefore must be better), they would prescribe it for their patients and stop prescribing NDT. Many of their patients hated levo but the doctors knew better than their patients what was good for them so they had to carry on with levo.

These days many doctors have never even heard of NDT. Those that have think it is the kind of stuff that witchdoctors produce. And yet plenty of people buy NDT over the internet and live happily ever after. Unfortunately doctors and pharmaceutical companies don't like people getting better without spending money on doctors and pharmaceutical drugs so one day, probably, NDT will be banned. The fact that the people who will suffer are mainly women means it isn't very important, and doctors and pharmaceutical companies don't need to worry about them. Everyone knows their symptoms are all in their heads after all, so they don't count.

(My apologies - I tend to get angry and sarcastic when I think about pharmaceutical companies and doctors.)

[sulamaye]

You need to post your results with ranges, we don't know what her version of 'over' is. Is it tsh suppressed or t4 or t3 over range? You haven't said how you feel.

I take it you ate self medicating with NDT? That's up to you, I can't see a GP kicking you out for it, if you take responsibility and she's not prescribing she's not responsible. I told my GP I was on t3 only, she referred me to endo, who I convinced to prescribe me t3, but even if I hadn't she wouldn't have kicked me off.

[Jackie101]

Thankyouvery much for your replies, they're a big help! I haven't got my print out yet to see what the result is. My surgery does most consultation over the phone..

[Jackie101]

Hi, finally got results, receptionists wouldn't give me a printout without a note from Dr..

TSH - 0.04 T4 11.6.

I didn't take medication on the morning of the test. I tend to have good days and bad days. If i go out, I can last 4 -6 hours then I'm usually spent for rest of evening..and sometimes into the next day..like today. Thank you

[Clutter in reply to Jackie101]

Jackie101,

Your GP is used to interpreting thyroid results based on Levothyroxine therapy where TSH can be within range when FT4 is high in range. On NDT TSH will often be suppressed with FT4 low or below range. When optimally medicated on NDT FT3 will usually be in the top third of range. I recommend you order thyroid finger prick home test from Blue Horizon or Genova to check FT3 thyroiduk.org.uk/tuk/testin...

Updates aren't seen by many people so if you want more replies you could post your results in a new question.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Jackie101]

Thank you very much for your reply. I find all the specific info difficult to understand due to brain fog.. Does FT4 mean T4? I don't think I've ever had a t3 test. Thanks for the suggestion of posting another q..

[Clutter in reply to Jackie101]

Jackie101,

Use the Reply button underneath the post you are responding to and the member will get an email and on-site notification that you have responded.

FT4 is Free T4. Free T3 doesn't seem to be tested in much of primary care now. It may be helpful to order a private FT3 test.