levothyroxine after total thyroid removal.how bad is it any good stories?

i m 29 years old woman.I had my tt before 2 weeks...i have been straggling with carbimazole for about a year....anw I have searched all over the internet and read vlogs and stories about taking levothyroxine and i have NOT read one positive thing about it.

All i read is that people that taking levo are straggling with GAIN WEIGHT,HAIR LOSS,HYPER/HYPO SYMPTOMS, they feel tired and bloated and nothing good about it.I have taking it for 2 weeks and i m terrified!i can handle the weight gain but the hair loss is scaring me.I had all those symptoms when i was hyper! i had some hair loss when i was taking carbimazole for 2-3 months but then it got better,i had the surgery and now i worry even more.will this ever be good?

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  • after TT many patients simply find that levothyroxine which is only t4 is simply not a complete replacement for their lost thyroid

    hence they are often better only on NDT because it contains t4 t3 t2 t1 and calcitonin

    which is what their normal thyroid would have done

  • Many many people do very well on Levo, they are getting on with life so aren't here to tell you about it, having said that I'm here, I have no thyroid and I am well on Levo, so are 4 other members of my family.

    It can take time to find the right dose but there is no reason to assume it won't work for you.

  • I had total thyroid removal in 2013 and was on Levo up to 100 mg but did not feel 100 percent. Put on 3 stone over that time and last October changed to Nature Throid which I had already purchased and imported. Told GP that, because I knew that she was not allowed to prescribe T3, I would have to use NT to get any T3. I also told my Endo earlier this month. I asked if he was forbidden to prescribe T3 and he said he could no longer provide it and would support my decision as well as supporting my GP. I feel much better. I have suffered some hair loss but not major. However I have, this month, lost 6 lbs!! I am sleeping better as well. I first combined 100 Levo with 1/4 grain and have built up to 2 1/2 grains since October last. Consider it but go slow.

    janveron

  • You should consider yourself very lucky indeed if you can maintain good health on Levothyroxine monotherapy after a total thyroidectomy. You need to give it about 6 months or so on it to discover whether you are one of the "chosen few" as, by then, you will have started to notice such things as persistent fatigue. If that happens you will need to consider changing your medication to include synthetic T3 as well or switching to NDT.

    You should on no account simply assume that because the doctor says your blood results are "in range" or "perfect" that there must be something else wrong with you.

  • thats scares me now

  • There's no need to be scared about anything as you will now be aware of what lies in store for you. That is a darned site more than I had because the doctors told me nothing whatsoever of any use.

    You now know that levo could possibly get you fighting fit and well again one you have established the correct dose. You also now know that there is a greater chance of that not happening and that your hypo symptoms will probably continue even when your doctor informs you that you are perfectly healthy when he looks at a set of blood reports.

    You will then know that you need to seek some advice from this forum on what is your next step. That is a choice between substituting some synthetic T3 for some of the levo or ditching your treatment from your doctor altogether and getting your own supply of the original natural medication (NDT, often referred to by the brand name Armour).

    There are however a few problems associated with these choices. The first one is that you are most unlikely to get any T3 from your doc due to cost. The second is that you are even less likely to get an NHS prescription for NDT, but perhaps a private prescription is easier to get, but the price is quite prohibitive. Bought on the web from certain locations other brands are available at far lower cost and are just as good. Even then the number of places you can buy this generic drug from is reducing and the price is increasing.

    In the meanwhile read up on here and elsewhere all you can and gain some confidence in what you are talking about when you see any doctors. Most doctors know very little about thyroid treatment. The ones I have seen were completely useless and it is a case now of me teaching them what to do to treat me with me fully aware that they are prohibited from actually doing anything I tell them to do.

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