Under active thyroid and B12

Hi all

Does anyone have an under active thyroid and is self injecting b12 or being treated by dr? I'm on 125 levo and have raised antibodies, I take selenium , magnessium , b complex and Spatone. Have been self injecting for 2 months now every other day. I thought I was feeling 50% better but now id say 20%. . The dr gave me a form for a full blood count yesterday full thyroid and vitamin plus 9 am cortisol ( she suspects CFS) I feel low, tired , aches and pains and out of breath, feel like it could be thyroid as my t4 has been dropping gradually. Is this why b12 isn't working? I'm making all this effort and feel I'm not getting anywhere. 2 months in I thought I'd feel better. We would like another baby ( at least try) but how can I!! I had no problems before my daughter was born. My health is awful now :(

Any words of wisdom or advice :) :) r

18 Replies

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  • Hi, it could be a few things but for a start:

    How is your folate level, as it works in partnership with B12 and supplementing one without the other can cause a deficiency, similar for vit D and ferritin.

    Since you say you have anti-bodies, are you on gluten free? Malabsorption typically causes low nutrients and hence poor meds absorption and lowered conversion

    CFS is a diagnosis made only when doctor doesn't understand what is going on and is actually quite frequently undermedicated hypo.

    When you get your new results post them in new thread with ranges and I am sure you will get lots of help.

    Gillian xx

  • Thank you. I'm going Tuesday. Folate was 24 10-42 I was taking the 5 mg but advised to take a B complex which has folate in it. So stopped taking the 5 mg as I wasn't feeling right. My ferritin was 63 when I started B12 Jabs so I'm taking spatone now . And my vitamin d was 122 , so quite good. I tried gluten free last year when I was told that raised antibodies means hashis, ( no Drs have ever discussed it with me) but because I only eat fish I found it quite difficult to follow as lots of the veggie bits had gluten in. My T4 was 18 it's now 11. My tsh was 0.9 it's now 1.48. That was in October so I feel it's changed for the worse.! I feel I'm running out of ideas, I was prescribed T3 18 months ago but I stopped taking it in July as I was feeling rubbish, dizzy, and heart racing . I now realise that was B12. My levo dose was 100 mcg then and my t4 was 20!! Now I'm on 125 levo and it's getting lower. I really don't understand hashimotos at all.

    Thank u again and I'll pop the results up next week xx

  • It is becoming clearer! Equivalence of T3 to T4 is quoted as 3-4 times. So you went from a dose equivalent to 160-180 Levo down to 125 and now your Tsh is rising. You may have been slightly over medicated previously but you seem to be under now.

    As to nutrients, I believe spat one is very low in actual iron so probably not enough to raise anything. Also that seems to be an awful lot of B12 you are taking - are you sure you need that amount? While I know excess is not toxic, you would need to keep all other co-factor nutrients to an equivalent level to avoid going off balance.

    Good luck xx

  • Omg I never thought of it like that!! So it's possible then that raised antibodies is a recent thing and while 100 mcg was enough 18 months ago, going by my levels. Now I'm symptomatic 125 isn't enough but 10 mcg a day of t3 was too much!!! With the 125!!

    Well my B12 was 162 and I have so many symptoms , but yes I see what your saying. Maybe I should take an iron and vitamin d suppliment . Dr had added all those to the blood sheet so maybe something else will show up. It's really getting me down as I'm 41 and time is running out for a second child

    Xx

  • Sorry I picked up your dose wrong - so you were on 100 T4 + 10 T3? So that equals between 130-140 levo as against 125 now? The anti-bodies don't have to be a new thing, we often have them before we become hypothyroid. They are indicators of your immune system attacking your thyroid and destroying it gradually. So yes over time your own function will decrease and you may at times require an increase in replacement dose.

    Yes your B12 was very low, but I suspect you may be over replacing. Have you tried reducing the frequency of the injections at all? Even on the PA group I don't recall seeing many who injected beyond once a week at most, and most considerably less.

    Let's see what your up to date numbers show. xx

  • I don't know what is best re B12. Maybe if everything else is in order I could top up with t3. And reduce B12 ๐Ÿค”

    So! I was on 100 levo. Dropped to 50 to add 10 t3. Went hypo, up to 75 levo with 10 t3. Still hypo , up to 100 levo plus t3. Endo said my t4 should be 20 .it was 15 so my dr in April said go 125 levo with 10 t3. By July started feeling weird, dizzy, low mood, no energy to do my horses. So I stopped taking it, in the mean time my neurologist ran the antibodies test which was slightly raised, dr said no further action. As I was feeling bad still in October I did the blue horizon panel to see how the antibodies were and it showed the low B12. So a bit in limbo with the crossing symptoms. I belonged to a group on face book and was told I should inject every other day because I had neuro symptoms. But I can't judge now whether to reduce. I feel no better before one or after one!! It's all very draining.

    Thank u for your time :)

  • 10mcg of T3 is equal, in effect, to about 30mcg of levothyroxine.

    I am assuming your thyroid went awry after childbirth and sometimes that's quite common. One link said an equivalent should be 3 T4 to 1 T3.

    I shall give you two links.

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

    Excerpt from link below:-

    The subjects in RCTs received T3 in some ratio to the withdrawn T4. The various RCTs used T4:T3 ratios of 14:1, 10:1, and 5:1. Subsequent research by the US National Institutes of Health (NIH) found the therapeutic equivalence was 3:1.

    Thus, most of the subjects were under-treated with the T3/T4 combination. In light of the NIH finding, the conclusion that T3 therapy is never needed is invalid"

    tpauk.com/images/docs/reduc...

  • That first link is very interesting thank you, I will post my results up next week as I'm going on Tuesday for the fasting blood test, that's for everything, and I'll take my

    thyroxine on Monday morning instead of Monday night. That leaves 24 hours . Thank you x

  • Will look out for your new results :-)

  • Feel awful today , crying , breathless and no energy , so upsetting , I'm 41 and feel 80. My legs feel dumb and wobbly. So draining :( sorry for miserable reply x

  • Perhaps it is a dull day and that could be making you gloomy. We are cold and overcast in Crete - and I do not feel my best ๐Ÿ˜Ž๐Ÿ˜Ž

  • Aww really. If only, it's sunny and bright, beautiful day and MIL is coming to baby sit so I can ride my horse. Haven't the energy. I've just checked the B complex you suggested and it's got 400 mcg of B12, could I be taking too much? But you can't take too much of it! I'm clutching at straws! I need to get the results next week and go from there x

  • You cannot overdose on B12 as it is water soluble. Which type of B12 is in the complex. Don't answer until you have been for a ride ๐Ÿ˜€๐Ÿ˜€

  • Haha I rode. Felt wobbly though and I don't feel right at all . The B12 is methylcobalamin 400mcg. My sister in law said I look really tired but even 9 hours sleep does nothing ๐Ÿค”

  • How about adrenals ? Dr Rind has a website where there is a Metabolic Questionnare - Adrenals v Thyroid. Could be helpful. So glad you went for a ride ๐ŸŽ๐ŸŽ

    Gluten free ?

  • Aww thank u. Yes it was lovely. Very cold and icy here, I'll have a look thank u. I'm having the 9 am cortisol done on Tuesday , xx

  • They do say the 24 hour Saliva test is more informative. Cortisol follows the Circadian body clock ๐Ÿ˜Š Genova Diagnostics do it privately - a home test ....

  • Aw ok , maybe I'll do that. Tried gluten free and I didn't like it as my veggi bits all have it, struggled really x

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