Dose problems

I am new and I have no idea what to do about my dose. I stopped my medication of 150mcg levo 2 days ago because of previous results and I am worried about having the same results with no over medicated symptoms again. Diagnosed 2012 and have symptoms of numbness in feet and legs, losing eyebrows and hair, hard stool, weight gain, heavy and irregular cycles, feeling cold, puffy eyes, voice sounding low, goitre. Since having the over medicated results I feel that I can't trust myself with taking the medication anymore. Thankyou for any advice anyone can give.

200mcg levothyroxine and 20mcg T3

TSH <0.02 (0.2 - 4.2)

FREE T4 36.8 (12 - 22)

FREE T3 10.4 (3.1 - 6.8)

TPO ANTIBODY 405.1 (<34)

TG ANTIBODY >1500 (<115)

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28 Replies

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  • Hi Charli4, welcome to the forum.

    Can you post your results on here, with the ranges, and tell us how much levo you're taking?

    From what you say, I'm guessing you have Hashi's/high antibodies, and that you've just had a flare - but, that's just a guess, can't tell without see the results. But, if that's the case, rest assured, the results have nothing to do with you or your dose. :)

    Some of your symptoms sound like nutritional deficiencies, so have you had your vit D, vit B12, folate and ferritin tested? If not, it's very important to do that as soon as you can. :)

  • I have posted results, I was taking 200mcg levothyroxine and 20mcg T3 at the time. Have now had it reduced to 150mcg levothyroxine and no T3 but I don't want further over medicated results and I am afraid of having my thyroid medication stopped. I want to take the medication because I know I need it but if I keep getting results like this it puts me off taking it.

  • Yes, I can understand that. When were those tests done?

    Believe me, you are not over-medicated. You have Hashi's, that's all. Has no-one ever explained Hashi's to you?

    Hashi's is autoimmune thyroiditis, where the immune system attacks the thyroid, mistaking it for the enemy, and slowly destroys it. After each attack, the dying cells dump their store of hormone into the blood, causing levels of T4 and T3 to rise, temporarily - therefore, the TSH goes down. But, it doesn't last long. Eventually, the levels will go down by themselves, and you will be hypo again. Maybe stop your levo and T3 completely for a few days, to bring the levels down? As you say, you don't want it reduced by the doctor, because you're going to need it again, when you go back to being hypo.

    If ever your doctor says anything about these levels to you, I'm afraid you're going to have to explain to him how Hashi's works! I doubt very much that he knows. In fact, I doubt he knows very much about thyroid at all. Which is why you have to learn all you can, to guide him.

    But, I repeat, none of this is your fault. You haven't over-dosed or done anything else to cause your levels to rise like that. It's just the nature of your disease. :)

  • Hi and thanks for explaining to me. The tests were done 3 months ago. I had the dose reduced to 150mcg for all of that time before I stopped it. The other blood tests were done 4 weeks ago and another set done almost a week ago and I don't know what the other 2 are. I don't know what Hashimotos is and I am feeling really awful now.

  • If you live in the UK, it is your legal right to have a print-out of all your blood test results. So, ring the surgery and ask for one. You need to know what your results are.

    Your levels have more than likely gone down, now, and you need to take your levo again. But, it's rather doubtful you'll get your T3 back, I'm afraid. They are just looking for excuses like that to take T3 away from people! - I am, of course, assuming that you're in the UK. If you live elsewhere, ignore that last paragraph! lol

  • Hi yes I live in the UK. My previous endo identified a clinical need for me to have it, my current endo thinks I don't need it.

  • I still have T3 left, would it be wrong to use what I have remaining?

  • Not at all. I imagine you had it prescribed because you weren't converting very well. So, you still won't be converting very well, and will need the T3. The question is: what will you do in the future?

  • Yes I had it prescribed due to my poor conversion on levothyroxine alone.

    TSH 1.20 (0.2 - 4.2)

    FREE T4 19.5 (12. - 22)

    FREE T3 4.0 (3.1 - 6.8)

    No idea what to do in the future, not that I haven't thought about it but I kind of worry about it now and again and I am hesitating about whether to add what I have left back in or return it to the hospital pharmacy.

  • There would be no question for me, I would add it back in. Your conversion is bad. You need it.

  • A lot of endos are anti-T3. It's pure ignorance. Your results say you do need it.

  • My endo definitely is anti-T3 and anti-Armour and anti-NDT. He said there was no proof either work and he kept saying levothyroxine is the gold standard in treating hypothyroidism.

  • Also I need to be gluten free? Would that be after the gluten challenge the GP wants me to do?

  • Yes, because you can't get tested for the effects of gluten, if you're not eating gluten. :)

  • Hi I just wanted to clarify that with Hashimotos I need to be gluten free. I asked a previous endo this and she said "well, if it helps your symptoms..." I did not do the gluten challenge properly last time so I want to get it right this time since I have symptoms and worsening vitamin levels which seem to inidcate coeliac disease.

  • It is possible to be gluten sensitive without being a coeliac. You could test negative for coeliac and you could still be sensitive. Why not just go gluten free ?

  • Endos know nothing about nutrition. I wouldn't expect an endo to know about gluten-free.

    It's not so much that you absolutely need to go gluten-free, But, you might find that it lowers antibodies and makes you feel better. What you need to do is try it.

    I don't really understand what this 'gluten challenge' consists of, apart from eating gluten and then being tested. It's a British thing, and 'challenge' seems to be a rather over-worked word in the UK. But, if that's what your doctor wants you to do, you have a choice : either do it or don't do it. You know what it is, you choose.

    As Marz says, the test for Coeliac is notoriously unreliable, and you could easily get a false result. But, you could be gluten sensitive without being coeliac. So, one option is to just try it and see how you feel. You might not be gluten-sensitive or Coeliac, but you won't know until you try going gluten-free and see if it does anything for you. This is not an exact science. :)

  • Well, just goes to show how ignorant he is!

  • Other results

    FERRITIN 68 (30 - 400)

    MCV 78.2 (80 - 98)

    MCHC 388 (310 - 350)

    MCH 28.1 (28 - 32)

    HAEMOGLOBIN ESTIMATION 126 (115 - 150)

    HAEMATOCRIT 0.42 (0.37 - 0.47)

    RBC COUNT 4.55 (3.80 - 4.80)

    WBC COUNT 6.18 (4.0 - 11.0)

    PLATELETS 253 (150 - 500)

    IRON 10.4 (6.0 - 26.0)

    TRANSFERRIN SATURATION % 13 (10 - 30)

    VITAMIN B12 445 (190 - 900)

    FOLATE 2.0 (2.5 - 19.5)

    VITAMIN D TOTAL 70.2 (50 - 75 SUBOPTIMAL)

    MAGNESIUM 0.81 (0.70 - 1.00)

    SELENIUM 0.93 (0.89 - 1.65)

    Surely I should be taking more iron than once a day if I have iron deficiency anaemia?

    Taking 5mg folic acid once a week

    5000IU vitamin D3 during the summer and spring and taking 800iu in the winter and autumn

    Taking magnesium spray before bed

    Had first B12 injection in June 2017 for relief of low B12 symptoms, once every 3 months. Is 1 injection enough or do I need more?

  • Indeed you should, but I'm not very good with iron. So, if no-one else chimes in and explains it to you, post a new question, just asking about iron.

    There's something a bit wrong with your dose of vit D3. It's during the autumn and winter that you need it the most, and reduce it in summer. Also, if you are taking vit D3, you should be taking vit K2 - MK7, as well. Taking vit D increases your absorption of calcium from food, and the K2 makes sure it goes into the teeth and bones, and doesn't collect in the soft tissues.

    Magnesium is a cofactor of vit D3, so you should be taking some of that, too.

    5 mg folic acid once a week is not going to do much for you. Your vit B12 could be higher, too, it should be at least over 500. So, I would suggest you take 1000 mcg sublingual methylcobalamin (B12) daily. And, with that, take a B complex - to balance the Bs - containing at least 400 mcg methyl folate. And, that will bring your folate up nicely. :)

  • Thanks, oh I see. So I need more than 5000iu vitamin D right now? Seems a lot when I have been trying to raise it on 5000iu since February this year. I did not get on very well with the 800iu vitamin D prescribed to me, it gave me a stomach ache and did not do anything to raise my level.

  • No, I meant you need more than 800 in the autumn and winter. And 800 in the summer and spring. But, I think I must have misunderstood what you said. lol You're taking 5000 iu right now? It's true that 800 wouldn't do much for you.

  • Oops! Then I don't know why my vitamin D isn't higher on 5000iu. Maybe that's because I haven't been taking the co factors? Yes I take 5000iu right now but since August has been and gone I am now thinking about changing the dose since it changes in the winter but by the looks of things I have dosed myself completely wrong.

  • Don't blame yourself. Doctors are rarely. Ludecup on D3. Some even tell you to stop and then seem surprised when it plummets again!

  • Hi Charli4, Welcome to the forum.

    Can you give us your blood test results, then I'm sure we can help.

    It needs to be with ranges, the numbers in brackets.

    How long since you stopped taking your levo? It's important that you take it. It's not a medicine, it's a replacement hormone for the ones that your body isn't making properly.

    Your symptoms sound as if you definitely need your levo.

    A set of overmedicated results may be for various reasons and may just be a one off.

    Please don't worry. Someone will help you.

  • Hi I have posted results and I stopped taking it 2 days ago.

  • Well done, Charli4, we were all replying at the same time. You are in good hands with greygoose.

  • Do not stop taking your Levo you will very soon feel extremely ill if you do.

    You almost certainly need to be on 100% strictly gluten free diet. About 5% with Hashimoto's have coeliac, about 85% are gluten intolerant. There's no test gif intolerance you just have to do it. Coeliacs only reliable test is endoscopy after 6 week high gluten diet

    But even if negative for coeliac you should still go gluten free. Personally I wouldn't bother with coeliac endoscopy

    thyroidpharmacist.com/artic...

    amymyersmd.com/2017/02/3-im...

    chriskresser.com/the-gluten...

    Low stomach acid can be an issue

    Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

    thyroidpharmacist.com/artic...

    Other things to help heal gut lining

    Bone broth

    thyroidpharmacist.com/artic...

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