So tired again!!

So 5 weeks into my 2nd increase - now on 100mcg a day, had the initial "levo rush" and felt fab, then hit a low and felt rubbish and now Im just so confused again, tired (not to the extremes of needing a nap every day just can't get going) and want to cry all the time.

Doc did some other bloods and I got the message back that "everything was OK patient normal" well, I just phoned and got my actual B12 results as she had been worried about that and I think it's low but Im not sure! It's 228 with a reference range of 180 - 2000 (the receptionist definitely said two zero zero zero).

Im back on the 24th for repeat bloods (8 weeks after increase) and docs on the 26th to see what's what and Im trying to get my head round where we go from here.

So I levels were :

50mcg daily : T4 13 (9-21) and TSH 4.4 (0.2-4.5)

75mcg daily : T4 15 (9-21) and TSH 3.0 (0.2-45)

Im now on 100mcg daily so presuming the levels come down by the same amounts again (and the GP wasn't really looking at putting me on more than 100mcg anyway) that would take the ranges down to roughly T4 17 (she was aiming for about 18 so that would be about right) but TSH only to 1.5 so still a bit high as she was aiming for about 0.4.

So - Im thinking I need a B12 supplement or something at the very least and I can't quite figure out if the figures being out of sync a bit (as in not both being at optimal at the same time) means I should be pushing for T3?

Im so confused and brain fade is really really bad - could not remember the word for plates the other day and burst into tears and I repeatedly called the window cleaner the dish washer man which my hubby and son thought was hilarious ....... until I burst into tears! Have to write EVERYTHING down and still forget things constantly.

Im so confused and trying to get my head round it - this latest increase up to 100mcg hasn't really done anything - if anything, it's made my brain fade worse.

Can anyone help me get my head straight (tall order I know!)




8 Replies

  • I had just wrote a message and pressed the wrong button to send it. This is one of my brain Gogh momments. I just see an orange button and press.

    So frustrating because I had quite a long message.

    However I was just saying that I understand how you feel. I am also recently diagnosed I started of with a TSH of >99 and 75mcg of levo. I am now on 125 levo and my last TSH was 6.

    It's taking ages and I'm Hoping for another increase as I still feel terrible.

    I know how you feel about the brain fog as I struggle to form a scentance.

    Hang on in there tho. I'm sure we will be fine with the advice and support from this group.

    I can't offer much advice really as I'm just learning about our illness.

    I do know that people have said to me that meds/ symptoms can lag behind up to 8 weeks.

    I'm sure someone else will support you further. Sending much love

  • Thank you - I hope you start feeling better soon - it's pants isn't it!

  • It's totally pants :)

  • Your B12 is much, much too low. it's in range, yes, but it's not just about being in range, it's where in the range it falls. and since the ranges were fixed, we've discovered that anything less than 500 carries the risk of irreversable neurological damage, plus a host of other horrible symptoms. So, that could be why you're not feeling any better. Low B12 symptoms are very much like hypo symptoms.

    If I were you, i would supplement with about 5000 mcg sublingual methylcobalamin daily, plus a B complex to keep the Bs balanced. I can't stress this too much, it's very important. Optimal B12 is around 1000, so you have quite a way to go. :)

  • Mandy72, I am sorry you're not feeling so good. Before blood tests and levothyroxine were introduced the normal dose of NDT was between 200 and 400mcg. So nowadays we get given very low doses at times.

    You need another blood test before the due date and just say you've bad clinical symptoms.

  • Thanks - pm so phones the GP to discuss the B12 - most people are not symptatic until counts down about 100 apparently so it can't be that!

    She enquires about how I was feeling (as in she could tell I was upset) and told her I feel like I've been given a dodgy batch of meds and they are doing nothing and I've reverted back to how I originally was or something else was going wrong and that I get upset because I can't thin straight or get confused easily so she wants to see me Monday to do mental, concentration & mood tests - so she clearly thinks I have some form of dementia and am depressed!

    Said what about if I tried B12 supplements to see if it boosted the levels and she agreed it wouldn't do any harm but she didn't think it would make a difference but if I wanted to try them then there's no reason why not to so off to Holland & Barrett tomorrow to get some!

    Am so upset with her as she's been so good with me but she wouldn't even agree that the levels were really low and I probably didn't help when I said I feel like my gran who has Alzheimer's except I know it's happening and I know it's not that but something is clearly wrong since this last increase - whether you thyroid is now "settled" and it's highlighting another issue or dodgy meds I don't know!

    So I'm now neurotic & depressed and self medicating with B12 - so glad I'm going out to test ride a new motorbike tomorrow to I've me something positive to focus on (just need an early night first!)


  • Have you had your Vitamin D checked? Also Ferratin and folate - all these can be low too and ideally need to be quite high in range.

    Important to get all your actual figures and ranges for blood test results - not just be told is "normal". Keep a record of these and how you were feeling, what dose on etc. helps to build a picture for yourself of what suits you best

    Also when do you take your Levo? You must take on an empty stomach and not eat or drink anything for at least an hour

    You might find taking Levo at bedtime gives improvement (did for me)

    When you get thyroid blood test in future get it done as early as possible (ideally before 9am), on empty stomach (can drink water beforehand) don't take Levo that morning (or night before, if taking at night) - take Levo dose after blood test.

  • Not got any other results but will check on Monday and ask for a print out as she did a few tests.

    I take my Levo in the morning when hubby gets up about 5.30am and then I go back to sleep ad don't waken til 7am and generally dont have brekky until about 9am so fine there and usually get bloods done first thing and skip the dose until bloods drawn :)

    I'm positive it's my B12 and that the Levo is doing what it needs to - just need to prove it with supplements I suppose

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