Can I please ask... At what point did people decide to take their medication into their own hands.

I'm on 150 Levo now. Dose was upped begining of October so I'm roughtly 5 weeks on this dose. (my previous results showed that my TSH had risen)

I don't think my levels will have improved much of at all as I feel awful. Fatigue is really bad and my joints are so sore. Memory terrible. Conversing a problem.

I'm getting to the point of helping myself as I'm feeling so fed up. I really just want to feel well. I know you all understand.

I also understand you may not be able to answer my question publicly so please pm me to offer advice on where to get ndt from .

27 Replies

  • After years of no one listening... feeling that if I couldn't help myself, then no one else was going to, I bit the bullet with a diagnosis from both Dr S [plus prescriptions] and great advice also from Dr P. Without that, I have no idea where I would now be and I'm not fully fixed, but lots of the time I can be 95%... still 'crash' but this is a much better life than the less than existence before. Following that, I 'went alone' with T3; [NDT was prescribed throughout for me].

    I loathe taking ANY meds [and won't - except when ABSOLUTELY vital]... for me these are HORMONES, not meds at all and that has me view it all quite differently.

    Hormones are, however, quite potent meaning that self monitoring [more than the authorities seem to do!] is crucial... the standard tests, for me, do not show the full picture and, for me, never did. Blood is not the full story when measuring thyroid performance.

    Absolute caution is essential... careful documenting is also necessary. THAT we must have these conversations is indicative of how poorly treated many of us feel we are.

    Hope you can find a way through this... the more I read on here, the greater the despair I feel for people, feeling compelled to take their health into their own hands to this extent.


  • Thanks Linda. I'm so glad I found this forum tho. It's so helpful . I wouldn't know anything about my condition if it wasn't for this site

  • You may not be absorbing for some reason. Have you been checked for coeliac disease?

  • Yes twice came back clear. They have also done stool samples to make sure I don't have an infection.

    I had my gall bladder removed in 2009. I have pcos and I also suffered from pancreatitis due to my gall bladder opperation.

  • Probably though you are not absorbing. You need to take Levothyoxine on an empty stomach with water and not eat for up to an hour afterwards to maximize absorption.

  • I take my Levo at night. I sleep better that way. I also need my coffee when I wake to get me going. That's why I changed my times. I also had my last meal tonight at 7pm so I'm well clear before I take my tablets normally between 12 and 1am

    I'm taking my levo correctly.

  • Sddixy, I started self-medicating 12 months after I was switched from T3 to Levothyroxine and my health had deteriorated badly. It took me 6 months to find the right T4+T3 dose THEN the endo agreed to prescribe.

    Give 150mcg another week or two and then have TSH, FT4 and FT3 tested. If you aren't converting well adding T3 or switching to NDT will be helpful.

  • Thanks clutter. Docs are reluctant to test me before 8weeks so think I will have to hang on anyway a couple more weeks.

    Going to tell my doctors what I am doing if I do decide to self medicate. I haven't seen an endo and don't know if they will plan on referring me.

    I did manage to get my t3 tested and that looked ok (I think ) which I was supprised at.

    My mum has been researching (bless her) she is wanting to understand what's going on with me. She said she will pay for a private doctor if I want one. She has been totally taken back by hypothoiroidism . Every time I see her and my step dad I'm having a bad day so they see me at my worst.

    I had one doc say that she was open to helping as much as she can so I'm going to try and see her again. (She was the one who managed to test my t3)

    Fingers crossed and thanks for the help x

  • These were my last results

    TSH - 9.4 (0.4-4.0)

    T4- 13.8 (10-25)

    Ft3- 5.2 (2.8-7.0)

  • What dose were you taking at that time? TSH should be around 1.0. But it's logarthmic so a 25 mcg increase in dose can lower TSH significantly.

    When you see the doctor, get your vitamin D, B12, folate and ferritin tested. Fat soluble vitamin absorption can be problematic if you do not have a gall bladder. Some people develop a pseudo gall bladder and have no 'dumping' when they eat fatty food. Some people don't develop one. Possibly get your retinol (vitamin A) tested as well.

  • Im never constipated. I'm always quite loose. Sorry for the graphic detail

    Previously my tsh had been 5.65 on 125mcg of Levo.

    They did test my folate , ferritin, vit d

    I was within range but lower range for ferritin and folate which I've ordered vitamins for.

    Not heard of vitamin A testing so I will look into that.

    Thanks for the advice. Much appreciated. :)

  • Had b12 tested too. It as that and folate I was at the lower end but within range. Don't know numbers.

  • Sddixy, TSH far too high, FT4 too low, and FT3 mid-range, probably only because TSH is so high. No way should TSH be so high and FT4 so low on 125mcg. 150mcg should improve both but I think you'll probably need 175-200mcg to see TSH around 1.0 with FT4 in the upper range.


    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.

  • Thanks clutter. Do they have a Max dose? I'm sure I read somewhere that they have a Max dose of 200mcg

  • Sddixy, there's no max dose. We have members on >300mcg.

  • I think she meant max standard dose of the pill - which I believe is 200mcg. I agree that some people are on 200+mcgs. (a 200pill +a 100pill)

  • LAH, no, she meant is there a maximum dose. 100mcg tablets are the largest available in the UK.

  • OK, didn't know that.

  • LAHs, UK only have 25mcg, 50mcg and 100mcg Levothyroxine tablets. Hence our penchant for pillcutters.

  • Can I just add that I rarely eat fatty foods or red meat due to dumping however I still suffer. My partner is a chef so we eat pretty healthy

  • Good that you've ordered the vitamin supplement then. Like Clutter suggested, you may require an even higher dose of Levothyroxine just to ensure enough of it gets absorbed. The usual absorption rate is about 70% of dose. If something is not going well, then absorption is usually even lower. Your 'effective' dose is much less than 150 mcg. The doctor just has to take into account that you do not have a gall bladder and may have some residual pancreatic function issues as well.

  • Yeah I don't think they take much into account but I will try find some literature to support this and take it with me. :)

  • Sddixy, you don't need supporting literature. Your GP should know that TSH needs to be between 1-2 for you to have reasonable FT4.

  • I have challenged them about it before. I have expressed concerns about being in range and still feeling unwell. I was feeling awful much like now before my last bloods. So I asked... Will you get me to an optiomol range which should be tsh1 ft4 above 20 and t3 on higher end he avoided answering my questions. And said we will get you within range. So I said what if I still feel unwell with range... He just said you will feel well when you are within range. I basically continued to question him and I got no where. I think doctors are trained on how to avoid a direct answer

  • I'm going to try get in with the female doctor I spoke of earlier. :)

  • What were your B12, folate and ferritin results? You say lower in range? Aim for your B12 to be over 500 - I only feel well if over 1500.

  • Ferritin was fine. That's me getting confused.

    B12 and folate were at the lower end of the scale

    My other results were towards the top. Didn't get a print out he only printed my tsh

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