My daughter (20) has no thyroid - moved to NDT a few years ago after endo suspected she was not converting T4 to t3 efficiently, more recently about 3-4 months- due to problems with sourcing NDT she moved to levo and T3 - gradually tweaking the dose - she is now taking 100mg Levo on an evening with 10mg T3 - then has 20mg on a Morning .. she still cold at time and is excessively tired on an afternoon - so has occasional been taking 10mcg T3 mid afternoon too and says she feels a bit better on this … she had COVID 2 months ago and was super seriously ill in hospital for a week and discharged with COVID pneumonia … a month ago she started losing handfuls if hair daily - this is still happening - she is so lucky because her hair was so so thick before so she is just getting away with it … ( she also has historic PCOS but this has been much improved the last few years whilst taking a contraceptive pill) .. she has seen an endo who thinks the huge hair loss is down to the COVID but he also thinks her dose of thyroid meds may be too high despite her still feeling cold and tired in the afternoon- he is wanting to do full blood tests next Monday am 8.30 , to test all thyroid measurements including reverse T3 , full vit amd mineral etc - question - she wondered when best to take her last doses if T4 and T3 before the morning blood tests ? and also wondered if she is taking T3 now will the results of the reverse T3 be able to tell us anything ? Or is this a waste of time … she is worried the endo will advise her to reduce the T3 , when historically she couldn’t function at all on T4 - she had no life .. any advice would be really helpful , many thanks
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caromum
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Gosh , Thank you sooo much !! She is at Uni but working part time - working tomorrow but I will message her to check what vitamins and minerals she takes ,, off the top of my head she takes a multivit - a separate vit D - I know she was taking a high Biotin but stopped this a few days ago as she knows this can impact on thyroid results ,,, not sure what else ,, I will forward her your guidance ,, and get back to you ASAP ,, thank you !!!!
She really shouldn't be taking a multi-vit, for all sorts of reason - poor quality ingredients; to much of some, not enough of others; things she doesn't need; things that shouldn't be taken together... All multi-vits are a waste of money at best, and down-right dangerous at worst, due to the things she doesn't need.
Just to say, if your daughter doesn't settle on a synthetic T3/T4 combo there is now stock of Natural Desiccated Thyroid so she does still have options.
It must be worry for you, but just thought I'd mention this fact.
Sadly there are very few doctors who know how to read a blood test for NDT - and in fact NDT was successfully used to treat hypothyroidism for over 100 years, prior to the blood tests, ranges and guidelines that were all introduced to be used when Big Pharma launched synthetic thyroid hormones.
Ideally with NDT you dose to alleviate symptoms and your readings of T3 and T4 will look " odd " compared to those of being on synthetic hormone replacement.
No thyroid hormone works well until ferritin, folate, B12 and vitamin D are maintained at optimal levels.
I 'm with Graves Disease post RAI thyroid ablation and am now self mediating with NDT and managing lingering Graves, thyroid eye disease and hypothyroidism and much improved but couldn't find a doctor who understood how NDT blood work, so now I DI for myself.
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