Mum transitioning to NDT, having such a hard time

[Lilwaa]

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

[Clutter]

Lilwaa,

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

[Lilwaa in reply to Clutter]

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)

[galathea]

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.

G

[Lilwaa in reply to galathea]

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?

[galathea in reply to Lilwaa]

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

Xx.

[Lilwaa in reply to galathea]

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! ❤

[webar4780]

Gosh lilwaa

I am so sorry to hear your mom is unwell. It is very difficult for you, I know.

I am grateful you have posted at this difficult time and feel sure more knowledgeable people here will help you.

I am really close to making an appointment with Dr P. I had a horrendous bout of ill health 2 yr ago. Many symptoms matching your mom's. It has been a very slow return to some sort of manageable health. As I do not want to feel so ill again, yes I thought I was dying!, I have phoned Dr P office with a view of attending an appointment. However, I saw a new rheumatologist team last week, so awaiting blood results, haven't made appointment with Dr P yet. Tonight I read your post and alarm bells are ringing!

Would you mind letting me know how your mom gets on? I really do not want to add to my problems or make myself very ill again.

Wishing your mom a speedy recovery. X

[Lilwaa in reply to webar4780]

Hello Thank you for your kind message. Its been a year or two since mum transitioned onto NDT and nutri adrenal and I have ti say its been really hard. Her ft3 and other bloods came up to good levels and she did feel better but never good. Dr P is a lovely man but unless you can self monitor rigorously and to some degree interpret your results to hange your dose, and stay in touch with him, I wouldn't recommend it. He didn't look at rt3 or anything other than cortisol and ft3 and syotims, which is better than Drs or endo's but for my mum is wasn't enough. She's just had to come off all thyroid meds for 6wks as she ended up with atrial fibrillation, palpitations and a variety of symptoms which he said weren't thyroid related, but this was over the phone. Since coming off them she's been generally better but uts been 2 weeks now and is starting to feel Te lack of anybthyroid support.. We are now in a very hard position a I don't know where to turn.. I do knw Dr P has sorted out a lot of people who are very satisfied but he wasn't on it enough for my mum, I wonder if he's just too old to be thorough, it certainly has seemed Tha way. Goo luck whatever you choose to do, I hope you did the right support for you Xxx

[Lilwaa in reply to Lilwaa]

sorry, so many typos, its coz I'm writing this on my phone!

[webar4780 in reply to Lilwaa]

Oh, thank you so much for taking the time and trouble to Reply, so swiftly as well.

I think I've made up my mind to hold back on making that appointment.

I researched very much when I was extremely unwell. During the research I found a link asking for volunteers for a research project covering sjogrens syndrome. I had just been diagnosed Sjogrens, on top of hypothyroidism which I've had for 27 years.

Attending the research programme was the best thing I could have done!

I am now a patient at the specialist centre for Sjogrens. Had my first app, waited 6 months, last week. I now feel in safe hands with a very knowledgeable team!

As I wholeheartedly believe my thyroid was very involved in my acute illness 2yr ago, I asked rheumatologist last week to do thyroid antibodies blood tests. He agreed. When I get a letter and results in 3 weeks time, I will let you know the outcome. So, I was in fact, delaying making Dr P appointment anyway.

Interestingly, last year, my levothyroxine was reduced twice. Originally, 125 mcg day, then 100, then 75 mcg. Recently, dose has increased to 100 mcg again.

I am currently suffering a bounding heart and palpitations during the night. I do not seem to have a comfortable inner temperature either.

I am 66 years of age, guessing your mom may be same sort of age?

I feel your post has helped me, thank you. I will hold back and not rush an appointment with Dr P.

I wish your mom well and you peace of mind, supporting her back to health.

What a lovely, caring daughter you are.

Xx

[Lilwaa]

I'm glad you have found support for your sjorgens, it makes such a difference.. Yes ,do let me know how your results are, I wish you luck and clarity! Thank you for your kinds words (again!) , its nice to hear you wishing us well Yes my mum is 68.. I'm glad you felt my reply helped, all the best, Anna xx