Urgent help/advice please!

I posted recently because my endo has asked me to stop my Levo prior to my 1st appointment with him as he thinks, because I am borderline I may not need it.

As luck would have it, from me complaining to the GP that I felt worse on Thyroxine than before I started it, to the time I got the endo's letter a miracle happened...I started to feel OK! From being someone who hated taking every single Levo tablet I now wanted to keep it!! My temperature had always been approx 34.5 but is now normally in the high 35s-low 36s.

I wrote to the endo telling him that I would prefer not to stop it, especially since I had been told that Thyroxine slowed down the antibody's attack on the Thyroid. (I have massive antibody levels which have reduced significantly but are still v.high)

I have received his reply today. He has told me if I continue to take the Levo I am wasting both my time and his. He says antibody levels are like high cholesterol or high blood pressure in that they indicate that a person may be at risk of having a Thyroid problem in the future but not whether they have one at the moment.

He goes on to say he can't evaluate the reason I am not feeling perfect if it is not clear that medication is necessary in the first place and that many people are started on Thyroxine without good reason and this can cause people to feel poorly.

I feel absolutely crushed and don't know what to do. Nothing in the world would give me greater pleasure than not having a Thyroid problem but as far as I am concerned, I have. The symptoms that have improved are constipation (but that could be due to me being gluten free) and just recently my mood swings/depression seem to have gone too-thank God but I still have massive problems with my weight, hair, skin, libido and temperature intolerance.

My latest blood results from March 2014 were:

TSH 0.33 (0.4-4)

free T4 17.8 (9-25)

free T3 3.7 (2.8 -7.5)

TPO Antibodies 1170 (they were originally 1600)

Please, please can anyone give me some advice? He wants me to do without Levo for 6 weeks but I am really scared about this. Firstly, from an antibody point of view, but also I am so worried in case my hair suffers even more :-(

Thanks very much x

8 Replies

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  • Endonob.

    Looking back at previous posts, your appointment with this "Professor of Endocrinology" is this month - when, exactly? Because even if you were to stop taking Levo immediately there'd still be some in your system for weeks. Any test done in the next week or two isn't going to give an accurate representation of your thyroid status without meds.

  • He's actually cancelled my appointment for the 22nd September and made another for October :-(

  • You feel fine, your test results look ok though there is room for more medication, the endo sounds like a bossy prat... Why would you put yourself through stopping meds, feeling rubbish only to prove a point?

    I once stopped t3 to please an endo, I felt terrible and so he conceeded I needed it.... After that I decided he was never going to get me properly better, so I have self treated for the past few years.

    If you feel better, have courage and don't bother seeing him.... You don't need people around who make you feel bad.

    What level is your ferritin? Levels less than 70 can cause hair loss. Get it tested.

    Never look back. - trust your own judgment, you are the expert on your body.

    Xx. G

  • A site you might find informative. thyroidpharmacist.com/ Dr. Izabella Wentz (PharmD) has a lot of info on her site and in her book about dealing with Hashis. You need to make some lifestyle changes to get the autoimmunity under control. Allopathic MDs are not taught how to do this, they will just let the autoimmunity destroy the thyroid and then put you on a replacement dose. Educating yourself is usually the most productive path for regaining your health. Dr. Brogan MD had postpartum thyroiditis and has some posts about her experience. PR kellybroganmd.com/

  • If you're feeling better on thyroxine and your GP is willing to keep you on it, why bother to see the endo? If he decides you don't need medication, you'll be worse off than you are now, because the GP probably will accept the specialist's judgment. The endo sounds like a jerk anyway.

  • My first reaction on getting the letter was to just tell him to forget it but I was really hoping he might have been able to help me with my other issues. Fat chance of that (no pun intended!)

    Galathea-when my iron was tested it was actually found to be borderline too high. My hair improved a couple of months ago but has recently thinned out again-but I'm hoping it may be due to stress as we have just lost my mother in law to Cancer?

    PR4NOW-although I was never formally diagnosed with Hashis, people on here reckoned I definitely was so I have always treated myself as such so have been gluten free for over a year now and I also avoid goitrogens, fluoride, soya etc. I have looked at Isabella Wentz's site before-she's very good. I've not come across Dr Brogan though so will definitely see if I can pick up anything new from her.

    Wombatty-I agreed to see an endo because my GP was clearly out of his depth (looked blank when I mentioned T3...and this is from a man who is himself Hypo!!). The particular endo is on Louise's list so maybe it's time he was taken off! I can accept him thinking that I am borderline and don't need Levo but am kind of shocked that he would be willing to take me off it and just let my Thyroid die. Where do they get these people??!!

  • You have Hashimoto's thyroiditis.

    stopthethyroidmadness.com/h...

  • This has never been formally diagnosed (surprise surprise) but I have always treated myself as having Hashis x

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