One small step for Chihiro =D: Had my appointment... - Thyroid UK

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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 :)

17 Replies

Well done chihiro, you're another trailblazer!

chihiro in reply to sazzyb

Thank you so much sazzy. I stil can't believe I managed to convince him! Starting meds in the next couple of days!!!

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 .....but he/she may well learn from this experience [ we all live in hope ] .....well done to both of you .....alan xx

chihiro in reply to alangardner

Thank you Alan :D Your reply made me smile...pleb LOL I shall have to giggle to myself next time I see him.

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 was done in Japan - but do note that the range for B12 there is 500 - 1300. Could that be why when we see printed tables of various conditions in the world - Japan seems to fare well. ( Not so sure now after the tsunami and reactor damage )

Maybe it would help. Also have you had a good look around which seems to have had lots of updates since I last looked....

Enjoy your evening....

chihiro in reply to Marz

Thanks for the link Marz. I believe that I have a b12 problem - possibly PA but this doctor feels very strongly that he never sees anyone with levels above 400 and his levels of 90 are fine so I think I will just be flogging a dead horse. I do want IF tested but not sure if he will agree now. Will ring the surgery and ask them to ask him if I can have it done.

Oh believe me nerves were there but the notes did the trick to keep me focused and I think it made me look like I meant business.

Just had my ANA results and they are negative so that's good news. Even greater news is that I am being started on meds :D Success!!! :D :

helvellaAdministrator in reply to chihiro

Has he ever shown you his results for B12? Though he might genuinely believe that to be true, I'd be sceptical without documentary proof. There is a video on YouTube of a doctor who failed to realise that his B12 was on the floor. He still works as a doctor - but has severe difficulty getting round the place.

chihiro in reply to helvella

I think earth would freeze over before he showed me his b12 results. He constantly goes on about it and I've heard he has said it to several other patients but I obvsiouly can't know for sure if it's true or not. There is not two ways about it...he is totally ignorant when it comes to b12 and the risks that come with having it that low. He says that when they reach those levels he supplements for a few weeks till levels go back up a bit and that makes him feel better *shrugs*

Marz in reply to chihiro

The above link to the talk talk by professor Smith starts 4 minutes into the video !

The last one is the video that Rod is referring to I think - about the poor Doc and his deficiency....

Good Luck with the medication - as you say SUCCESS :-)

chihiro in reply to Marz

Thanks Marz. I have watched some of those before but I'm listening to the one by Prof Smith as I type and it's really interesting. Thank you for the links :)

Marz in reply to chihiro



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.

chihiro in reply to shaws

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?

shawsAdministrator in reply to chihiro

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

chihiro in reply to shaws

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

chihiro in reply to crimple

Thank you :D

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