One small step for Chihiro =D

Had my appointment and it went a lot better than I was expecting. I had written notes on what I wanted to talk about and that helped me to stay focused. I brought up tsh not being a good indicator with high antibodies and I quoted Dr Toft with regards to treating when tft are normal but have high antibodies. I printed out the page from Thyroid uk. My husband said he looked a right picture whilst I was reading from it :D When I finished he said "well I have spoken to another endocrinologist this morning about you" as if to say" my endocrinologist trumps yours" :D

Anyway here is what we discussed:

Folate is now 20 so stop the 5 mg, not sure how right that is as I had read that it would take 3-4 months on 5mg to sort out a deficiency. I still have a box of 5mg so I might just carry on for another month and then go on a lower maintenance dose like he suggested to do from now.

Vit D has gone up to 63 (was 29 in the summer and 38 in January). Have been on 5000mcg x day for 2 months. He said he won't give me anymore of that dose and to buy 1000 mcg instead. Have 2 bottles of those at home so will take that and see how it goes.

B12 he just won't admit there is anything wrong with my levels. This is the man that has levels of 90 and feels fine so everyone must feel fine too *rolls eyes* Levels are 410 so not awful but will keep an eye on them as I have feeling the might keep dropping.

Ferritin is still under range. I explained I take floradix but would like to try iron tablets so I have come away with 210 of fumerate. Start with one a day and then go up to 2 if I feel I can manage. Constipation is a big problem for me!! levels are 9 (10-291). They have only come from 7 since January when I started Floradix three times x day.

A few weeks ago he had tried to label me as CFS. To get that label to stick he had to run loads of tests some of which haven't come back yet. He is especially interested to see my ANA because I today told him I had a positive result as a child. He has admitted that my tpo ab are high (1229 , up from 247 in January) and if the ANA comes back positive he says it will mean I have autoimmune problems. Why don't the tpo on their own mean that I don't know...

When I quoted Dr Toft and trialing T4 eventhough my tsh is in range he brought up that it's dangerous for my heart and bones (brittle bones). I told him I was happy to go ahead knowing these risks. He pretty much said yes ok but then backtracked by saying that he wants to see my ANA results first. I think those can take a while to come back.

Sooooo....end result is good. I feel I have achieved something. I was brave,bold and took no crap without being rude and that is thanks to all of you lovely people on here. I wouldn't have had the courage to do what I did today without all your support and help. So big THANK YOU. I know I have a long way to go and it might all go pear shaped anyway as he has a tendency to change his mind a lot but I feel this was a small victory and I feel utterly proud of myself *toots her own horn*.

Thanks for reading this epic post :)

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9 Replies

  • Well done chihiro, you're another trailblazer!

  • brilliant 'chihiro' ..... I guarantee that you & hubby feel so much better now that you are EMPOWERED with the correct info that you have gained ----- and that you both came away proving that YOU BOTH may know more than the pleb in front of you...


    Congratulations and it doesn't sound as if the nerves came into it. :-) Have posted the above link which was first posted by Hampster1 - not sure if it was to you. You can disregard the research which...

  • Well done. Re your GP and his low B12 (I hope I read that correctly) of 90. I don't think he is aware that levels of 500 or less can lead to alzheimers.

  • That's frightning shaws :( Maybe I should send it to him to try and educate him. I can never understand why levels are different in different countries.Why is it that in Japan under 500 you are deficient but here you aren't. Is it just to do with the fact that few doctors here know of the risks of low b12?

  • Whatever they test us for if we are 'within range' even at the lowest level they say that's fine 'your in range'.

  • I know, so frustrating! Hubby told me I rolled my eyes when he told me that my tsh was in range. Thank goodness he was looking at the screen :p

  • Pleased it went well for you

  • Thank you :D

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