Unknown territory...any advice welcome

Hi

May I call on your expert advice and experiences?

I have been hypothyroid for about 5-6yrs now and am currently on 175mcg of levo for 4 days and 200mcg for 3.

I have been on Jarrows vit b12 and a b complex supplement for 2 months and haven't noticed any improvement.

So have now had a blood test (results not collected from receptionist yet) but my dr has advised that my THT is a tad high now and need to reduce my levo to 175mcg all week.

My questions are -

1. Would the vitamin b supplements have helped with my levo needing to be reduced?

2. Is this normal to have it reduced despite feeling the same symptoms when it feels like you need your levo increasing? Such as forgetfulness, brain fog, joint pains heavy periods etc etc.

Will be collecting blood results next week and will supply them then - any advice or help appreciated!

Thanks

24 Replies

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  • Opps also meant to add been diagnosed with Hashi's end of last year

  • Can you tell me what THT means? Thanks.

  • Oops! Brain malfunction, I meant TSH :D

  • 1. If you've managed to optimise your B12, it might just be helping with conversion. But, without the number - both thyroid and B12 (what was your level, how much B12 are you taking, etc) it's impossible to say.

    2. If your doctor is reducing your levo because your TSH is low, then it's not normal. But, I don't know what he means by 'THT is a tad high'. Once again, we need the numbers. But, I would say that if he hasn't tested the FT3, then he has no idea whether your levo needs reducing or not. Tell him you don't agree.

  • When last checked my Vitamin B12 measured 371 (160-800)

    And I meant TSH (my fault)! Have tried to get him to test for FreeT3 but he wont so next time I see my Endo I shall demand they test for this.

    Thanks for your help x

  • You really want the FT4 and FT3 tested at the same time. That way, you can tell how well you're converting.

    So, what are you taking for your low B12? And how much?

  • Jarrows lozenge's 1000mcg 1 per day

  • OK, and are you taking a B complex with it?

  • Yes I am :)

  • That's good. :) So, you just have to keep on with that.

    But, did your doctor really say that your TSH was a tad high? If so, he should be increasing the dose, not lowering it.

  • This is what concerns me! I wont know until I get a print out of my results unfortunately

  • OK, well, let us know what happens. :)

  • Right! I have just phone Drs and they gave me the following for TSH & FreeT4 only

    My result 0.1 Parameters (0.4-5.0mIU/L)

    My result 18 Parameters (9-19pmol/L)

    Help?!

  • Well, your FT4 is not over-range, so you are not over-medicated. Your doctor is only looking at your TSH, and doesn't understand it - not many of them do! He thinks, because it is below range, you are over-medicated, but you are only over-medicated if the FT3 is over-range - which I doubt it is. The TSH is irrelevant once you are on thyroid hormone replacement, it can go as low as it likes, without causing problems. But, I don't know how you're going to convince him of that!

  • Ok collected results today:B12 was 371 now 874 (189-883)Folate: was 7.2 now 12.3 (4.8-19.0)ESR elevated tho 33 (1-12)Good news about B Vits but will be armed going to GP to refer me again as my Endocrinologist discharged me?!

  • What is your iron/ferritin level like? Heavy periods can be caused by low iron and also be the cause of low iron. Low iron also makes you feel rubbish.

  • As far as I know they have not tested for Ferritin but they did test Folate and it was 7.2 (4.80-19.00ug/L) so I may need to demand that test as well!

  • This may be helpful:

    web.archive.org/web/2010103...

  • Oh my god that's me?!? Thank you so much for that - onwards and upwards with trying to get my Endo to listen then! have a rheumatology appointment (I know) in April which I will be advising them of this...and will try and get them to refer me back to my Endo....should be fun!

  • I suspect that not one doctor knows that hypothyroidism is a 'full body' condition. Not one thing is unaffected. I will give you some links you can tick off your symptoms. In reality, if we are on an optimum of thyroid hormones we should have relief of ALL clinical symptoms. Recent research by several research units has shown that many feel the benefit of a T4/T3 combination.

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/testin...

  • This is fantastic! Thank you

  • If your TSH is high then your dose of Levo needs to be increased, not decreased.

  • If anyone is interested - I ordered recently a book (for kindle) called:

    "Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A revolutionary breakthrough in understanding Hashimoto's disease and hypothyroidism"

    Already I have only read 2 chapters and am stunned as to how relevant this is to me. I also have learnt a lot more than I thought I would so much so I have taken down a couple of passages to confront my Endo with.

    Would highly recommend this to people suffering with either or both conditions to give a clearer picture and an understanding of what we're dealing with.

  • Vitamin B complex usually contains Biotin. This can falsely affect a TSH test result.

    It's recommended to stop B complex supplements 4-5 days prior to any thyroid blood test

    So last Thyroid test is unreliable if you had not stopped B complex. Always get very early morning test, fasting and don't take Levo in 24 hours before - take straight after

    endocrinenews.endocrine.org...

    Also need vitamin D levels checked - very common to be low with Hashimotos

    Now you know you have Hashimotos are you on gluten free diet? Many of us find it really helps

    Selenium supplements can also improve conversion of T4 to T3

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