Endo said to stop Levo to see how much it is helping

Endo said to stop Levo to see how much it is helping

Went to see an endo on Tuesday, have high prolactin levels, no energy, lactating, headaches. Taking 50mcg of Levo daily. He said wants to see if it is making any difference to how I feel as he thinks I don't need it. I feel terrible at the moment going to work and then literally have no energy, panicking if I stop that I will feel even worse.

Also said my TSH has really been fine and I shouldn't have been put on Thyroxine. Anti bodies have been raised. My blood results are on previous post.

Had some more bloods Tue to see if maybe a Pituitary tumor.

Confused what to do. Still gaining weight quickly, lethargic, headache, carpel tunnel down 1 arm.

Any ideas suggestions, taking selenium and B 12

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11 Replies

  • Do you have your latest blood test results? Please post them with the ranges so that members can advise.

  • I looked at your post where you listed your blood test results :


    So, you've got Hashimoto's Thyroiditis (autoimmune hypothyroidism), your TSH has been over 6 and is still nearly 3 despite levothyroxine treatment. The one time your Free T4 was measured it was low in range. And your endo wants to stop your levothyroxine.

    Your endo is a sadist. I think you should refuse to come off levothyroxine. In fact, I think you need a higher dose.

    Have you been supplementing any nutrients? Your B12 was too low, your vitamin D was too low, and so was your ferritin (although the ferritin wasn't too outrageously bad.) Folate wasn't quite making it to mid-range and needs to be higher too.

    You could ask your doctor to be referred to another endo. I don't know what his/her response to that would be. The alternative is going private - but then you might end up with another sadist, so you'd have to ask for recommendations. Or you could treat your thyroid yourself. But since you have a problem with excessive prolactin (which I know nothing about) I don't know whether or not my suggestions are good or bad.

  • Can I ask what your prolactin level is? Can I ask if you are taking any anti sickness meds?

  • Last level for prolactin was 900, so not extremely high

    No I.m not taking anti sickness medication, feel nausea and have funny woozy like headache. Couldn't get to see a doctor this week at surgery so seeing a nurse Wed don't know if she.ll be able to help.

  • 50 mcg is a starting dose for the first weeks. A famous endo-professor here prescribes 50 mcg for the two first weeks, 75 mcg for the next two weeks and 100 mcg for the month(s) before the first control bloods!

  • Wish I had seen the famous professor, was suppose to be seeing Prof Ross but instead saw an Endo Doctor.

    How would I go about self medicating if can't get anywhere?

    Thanks for all your replies is very helpful when feeling so rubbish and don't know where to turn x

  • People can buy thyroid meds - Levo (T4), pig thyroid (NDT), and Liothyronine (T3) - online without a prescription.

    It would definitely be worth getting to work on improving your supplement levels first, because that helps lots of us.

    It would also be better if you had all the thyroid hormones levels measured - TSH, Free T4 and Free T3. Without that it wouldn't be easy to make an educated choice of which treatment or combination of treatment to go for. If you can make yourself well on the standard treatment (Levo) this will make life easier in the long run. But it isn't always possible.

    If you decide you want to self-medicate you would need to make a decision about what you want to try, what dose to order, and where to order.

    If you write a post asking for what you want and then ask for trustworthy online sources to get hold of it, ask for replies to be sent to you via private message because it is against the rules to discuss online sources on the public forum.

  • Your prolactin level is not is high Hun, but if you are getting bad headache, and problems with your visions then it's wouldn't hurt to get a scan done just to put your mind at ease, I can tell you one thing. To help keep your prolactin level down is to keep your stress level down that will keep them down a normal level is anything between 50-400 Hun. Mine at its worst was 5798 I had a scan and they found the start of tumours in my pituitary gland, I had five small ones , it was really scary at the time, cuz the doctors didn't want to do anything , cuz I take so many meds already, they didn't want to add to it. I had three years of not knowing what was happening, then I had a course of chemo then they did a prolactin level again and it was down to 586 which I was amazed it had got so low .

  • Well had phone call tonight from doctor to ask if I have stopped my Thyroxine, (he had asked me to stop Thyroxine last Tuesday, to see if the meds were helping me)

    I said No because I was worried how it would make me feel. He says good because he has made a mistake and I shouldn't stop the thyroxine if anything I may need it increasing.

    I am so glad I stuck to my instinct and didn't stop the mess.

  • Well, Hallelujah! That is a surprise! I wonder what prompted him to change his mind or what made him recognise his mistake? Perhaps he reads this forum! ;)

  • Ha ha never thought of that x

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