Graves - new levels and low B12 follow-up

Hello all.

Thanks for your replies to my last post about Graves:

I didn't write back until yesterday as my mum had been undergoing surgery this week, and I have been caring for my father. I also wasn't sure if this post within my thread was 'lost' - apologies if I've not followed the correct protocol by posting again here:

My update; I saw my Endo on Monday and then my doc yesterday (Friday).

Results are:

TSH <0.01 (ref 0.4 - 4.5)

T4 10 (ref 9.00 - 25.00)

T3 1.8 (ref 0.9 - 2.4)

She says that she's happy with these levels but won't let me reduce Carb too fast - so on 20mg until I see her in 6 weeks. Does this still sound over medicated?

I had an appoinment with the doc yesterday (re - 'other symptoms' like pins and needles etc which Endo said were definitely not thyroid related). This Doc (tend to just take 'pot luck' with who you get at this practice) said that my B12 was low when tested in December and that I should have been followed up .. The B12 level at that time was 195 (his minimum on reference range was 180 and upper, I think was about 400? - don't know what the unit of measurement was). So another blood test next week and a re-referral to Neuro (doc said my symptoms are too extreme to be B12 related - but I'm now thinking everything points to this - maybe pernicious anaemia?).

That would explain the 'nice and big' red blood cells then?

I'm now disappointed with my previous consults with my doctor/ various doctors. How could they miss following up on recall for low B12? I thought they were really on the ball before (apart from the one who thought I may be hyper-ventialting which would explain parasthesia - utter tosh - I am definitely NOT hyper-ventilating!!!)

I read over Hamster's post, but I started to glaze over as there was so much detail.. :-(

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4 Replies

  • Think they can quite easily miss out following up on tests - well on anything really. You need to get copies of your results with the lab ranges and keep a check on everything that has been done plus find out what they intend doing next and when that should happen.

    Good luck with phasing out your B&R - I don't know anything about cutting back - I went cold turkey from 40mcg Carbimazole and 100mcg thyroxine on a Thursday to - nothing at all on the Friday or from then on.

  • hampster1 is very well informed on PA and B12 deficiency. Worth following her suggestions. I have.

    The above website should give you adequate information to move forward with regards to testing beyond B12.

    As you can see your Doc was wrong about your symptoms being too extreme for low B12.

    Hope you soon feel better.

  • Oh dear, I've given you too much info!

    Get copies of your next lot of test results (make sure they include B12, folate and ferritin), don't expect any knowledge from any of the doctors you see and you won't be disappointed. Bring the UK guidelines along to whomever you see:

    Join this group and we can help you move forward:

    And personally I think you're still overmedicated on Carbi, I strongly suspected she's looking more at your TSH than your other results. My B12 deficiency got 10 times worse when my T4 tanked on Carbi. A double whammy. Can you phone her and at least ask to reduce to 15mg or 10mg?

    15mg is the highest dose I ever took, and when my T4 hit 9 or 10 (when I was on 10mg) my Endo let me stop the Carbi for a week to let it recover, and then restart on 5mg. This worked out fine. Please try and work with the Endo but put her on the spot - ask her is she just doing it because she's TSH obsessed?

    H x

  • Hi thistle girl , I have been in remission from graves for just over 7 months , I was lucky to be just on 5mg per day for 8 months towards the end I felt shocking My periods slow down I ached muscle weakness I knew something wasn't right I demanded to see specialist who apologised said I was in Norma range so prob over medicated fir moth or 2 ,however I ended up taking iron tablets as showed low , caused me a burning sensation & pond needles were b12 still have bloods ( I am due , just feel shocking before monthly so I akways worry its back) trying to eat healthy do still need to suppelment better , buy it was the biggest learning & educating myself through all support on here that got me through realising I wasn't going nutty!! X big hugs binkynoo x my graves was due to thyrotoxicosis I think they said x

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