Mum transitioning to NDT, having such a hard time

I am writing for words of support as I am helping my mum transition from levo to Naturethroid.. She's been totally off the levo fir 3.5 months now and was feeling a small bit better but in the last2 months has had quite a sharp decline. We are doin this under the guidance of Dr Peatfield. I got my mum to get investigative bloods last week and it turns out she's low on b12.. Her symptoms match it too, balance probs, lightheadedness, memory probs, fatigue.. A lot of them cross over with hypothyroidism but the balance and lightheadedness are new.. She also looks awful. I found myself reassuring her friends that to a degree this is normal, we are journeying towards getting the balance right with her ndt via correcting any underlying imbalance,but they are v worried about her. I found myself convincing one of them she isn't about to die last night! As far as I can see it I relatively normal to have a bit of a had transition whilst correcting underlying inbalances that may hinder absorption of hormone. Please can anyone shed any light on this? We are seeing Dr P on Tuesday.. Thank you

6 Replies

  • Lilwaa,

    Can you post your mother's results and ranges (figures in brackets after results) as it will help members to advise.

  • Hello, i will but im not sure we need help interpreting results (seeing Dr Peatfield on tues and looks like main thiing is B12 def - her freet3 is much better than wen she was on levo this time last year), it was more a matter of, is it normal to be having a ard time transitioning and getting balance right? But that said, any advice is greatly appreciated!

    ok here they all are (theres a lot!) she is beinng checked out for many things..

    Main symptoms in last 4 weeks ish (shes currently on Nutri adrenal x3, Naturethroid 3.5 grains) Balance probs, lightheadedness, foggyhead, weight loss, dizzyness, breathless, wamer than before (sometimes too warm!)

    Serum immunoglobulin G; 13.2g/L (7-16)

    Serum immunoglobulin A; 2.7 (0.4-2.3)

    Serum immunoglobulin M; 2.4 (0.4--2.3) ((high))

    Serum antitrypsin; 1.5

    Liver, kidney, stomach

    Anti-smooth muscle autoantibody - negative

    Parietal cell autoantibody - negative

    Anti-mitochondrial antibody - negative

    Antiliver kidney microcosmal antibody - negative

    Coeliac screening tissuse transglutanase igA; 1.9u/ml (0.00-20)

    Hep B, C - negative

    Serum copper 20umol/L (11-20) ((HIGH))

    serum caeruloplasmin 0.300g/L (0.2-0.6)

    Seum ferritin 504ug/L (12-230) (VERY HIGH) - indicative of inflammation

    serum C reactive protein 7.8 ((high))

    serum B12 303ng/L (197-771) ((LOW)) - Most people now agree ranges shold start at 500ng/L not 197! Alos have been told for Hypothyroid patient needs to be in top of range

    Serum folate 8ug/L (4.7-18.7) (LOW)

    Cortisol 611nmol (at 11.20am) - but was not saliver test! so just a snapshot

    Free T4 15.4pmol/L (12-22)

    FreetT3 5.6pmol/L (3.1-6.8) (both so mch better now on NDT)

  • If she has stopped levo... (How much was she on?). What has she replaced it with?

    I originally stopped my levo and replaced it with a small amount of ndt with the idea of building up the ndt over time. I looked and felt so bad that i gave up and went back to levothyroxine for a year.

    On my second attempt, i started at 1 grain and increased to 3 over a few months. Also.... Is the ndt brand suiting her? I have terrible problems with Thyroid S and erfa due to the way they are manufactured.... Probably the best one to start with would be a hypo allergenic one like Natureth Roid

    Despite my shakey start, i have been on ndt for about 6 years now and wouldnt willingly go back to the synthetics with rheir roller coaster ride.


  • Thanks Galathea, she was on 125mg Levo a day and is now oon 3.5 gras oof Naturethroid a day and 3 nutriadrenal.. she increased slowly too... at one point she had palpatations and internal shakiness and Dr P got her too come ooff it altogether for a week and then go back on.. increasing by .5 a grain a week.. too where she is now. Im pretty sure its down to VitB12 def now.. we'll see v soon, i'll update on here post Dr P apptment inn case it helps anyone else.. Did yo have too take adrenal supplements or B12? Are you feeling ok now?

  • I am fine now, though i did have problems with adrenals... I took cortisone for 2 years... I think this was before i took ndt.

    I have posted before, details of how i charted everything.... Will add the link. As soon as i can find it


  • thank you. I am really hoping our appntment with Dr P throws more light on what to do. He is very nice but has not looked at anything other than cortisol or thyroid hormone yet (4-5 months in) so I'm feeling quite on my own with finding out where the problem lies... She certainly looks and feels dreadful at the moment, and its really scary. I dont live close by either, I'm just here for a visit from Devon, I hate to leave her like this. I wonder if anyone else here has experienced such dramatic symptoms from possible b12 deficiency? I'm glad you feel ok now, long may it last! ❤

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