My daughter now has her second ever private test results so there is something to compare from 3 months ago. She has been supplementing as per the suggestions here. Results were obtained as per the testing protocol.
I've also included the Iron Panel results she had recently in case these can be re-interpreted. Particularly the TIBC and UIBC which are out of range. SeasideSusie has commented on the general Iron results, thank you!
My daughter is still symptomatic with great fatigue, salt cravings, disturbed sleep, poor circulation in hands and feet. Possible autism diagnosis (waiting list) definite sensory issues particularly sound.
She is undiagnosed, we are trying to rule a great many issues out (UA, Anaemia, Pernicious Anaemia, autoimmune and others).
Questions
B12 has dropped massively. She's been supplementing 500mcg daily. Medichecks testing info says to stop B12 two weeks beforehand so she did this. Her March results were taken before she started supplementing anything. So it is much worse now despite supplementing for three months.
Any ideas? Do I need to go to Pernicious Anemia forum to ask? I know very little.
Folate has shot up which is awesome. But no improvements in her symptoms. She is currently on 1600mcg. Should this be lowered?
Ferritin is similar to last time. She hasn't managed to start liver etc. Should I be encouraging this?
Thyroid any comments on how this is fitting in?
Vit D is a glorious 150. She is currently on 10 000 IU - any suggestions for a maintenance dose?
Many thanks for all your help.
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Sneedle
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How is her diet? Is she eating red meat & eggs for instance?
Her B12 is the stand out issue to me. You can't really compare serum B12 & active B12 as they measure different things. None the less her active B12 is far too low and likely causing multiple issues. Would recommend popping over to the Pernicious Anaemia group. They will also advise ref folate.
On the subject of B12, its often found in this group that raising B12 also raises TSH. FYI.
So if her TSH goes up with better active B12 status, does this mean that she may have thyroid issues which are coming to light? Or maybe no-one knows?
She's not great, thank you for asking. It's the tiredness and dizziness plus generally strange symptoms no-one has pinned down, . She had to leave sixth form in January and study for her A levels as a private candidate as she was too unwell. It's been a grim few years with declining health and useless medics (apologies to the open-minded ones). But she has an offer for a Foundation year in Plymouth starting Sep for Psychology and she wants to be well enough to go. She's really bright and I am fighting every goddamn step of the way to get her there!
It's really hard to predict anything really so once she gets her B12 up for a while retest and see what things look like then, also how she is feeling at that point.
Low B12 can cause so many symptoms and just getting blood levels raised with supplements isn't good enough for some to alleviate symptoms.
Recommend her trying ear defenders for the sensory issues.
B12 has dropped massively. She's been supplementing 500mcg daily. Medichecks testing info says to stop B12 two weeks beforehand so she did this. Her March results were taken before she started supplementing anything. So it is much worse now despite supplementing for three months.
Any ideas? Do I need to go to Pernicious Anemia forum to ask? I know very little.
If you want to know how much B12 you are holding on to you stop supplementing for 4-5 months. If you want to know what your supplement dose is achieving you continue to take it up to and including the day before the test.
Medichecks don't seem to be able to make up their minds. I have queried about stopping supplements with them before and this is what they replied:
Vitamin B12 supplements.
The answer to this depends upon what they are wanting to assess.
To work out whether B12 supplements are meeting the body's requirements we recommend not taking supplements for one week prior to having their blood drawn.
If a customer wants to assess whether they have an underlying B12 deficiency then it can take months (and potentially up to two years) for levels to fall to their natural levels after stopping supplementation. In this instance we would not recommend.
So two weeks is too long to be without her B12 supplement, and I got my information about not stopping it from somewhere else (sorry, don't have a note about where). You don't stop Vit D either, you take it up to and including the day before and that comes direct from the NHS lab which offers private tests to the general public and is in their public video.
As her Active B12 is a measly 45.2 (47.5-188) I would be taking note of the following:
Active B12 below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:
List any for the GP to support request for testing.
Doctors are supposed to prioritise symptoms over numbers where B12 is concerned.
I really do think B12 should be followed up, don't be fobbed off.
Folate has shot up which is awesome. But no improvements in her symptoms. She is currently on 1600mcg. Should this be lowered?
With her folate level now 45.4 (8.84-60.8) she just needs the standard 400mcg found in a B Complex to maintain this level.
Ferritin is similar to last time. She hasn't managed to start liver etc. Should I be encouraging this?
Yes, but there are other iron rich foods which I linked to when I replied to iron panel post. Her serum iron and saturation percentage are good and with low TIBC these show that so she doesn't need iron supplements.
Vit D is a glorious 150. She is currently on 10 000 IU - any suggestions for a maintenance dose?
She might be able to maintain that level naturally during the summer if she goes out in the sun, but for a maintenance dose she could take 1,000iu D3 daily and retest end of October to see if she needs to adjust dose for the winter.
There is minimal change to her thyroid levels, the small differences are probably just natural fluctuation as levels do not remain static.
Thanks SeasideSusie - so much info and I really appreciate your taking the time to explain.
B12 - She's going to write down her symptoms from the list you sent.
Are we asking GP for MMA test (for B12 deficiency?) and Intrinsic Factor for PA?
I looked up the link for the B12 testing info - it's very good information but since it's a private company called Synnovis located at St Thomas Hospital, I know the Gp won't like that🙄. So I'm wondering if there is a NICE guidelines page I could print out? I had a quick look but couldn't find anything obvious. I'm having to be belt and braces as I can't be present for the face to face appointment (we booked holiday before any of this arose).
I've taken on board your suggestions for Vit D, Folate and Ferritin, going to go back and look again at iron rich info you sent.
So I'm wondering if there is a NICE guidelines page I could print out?
Ask on the PA forum if they know of any and about what tests are needed and how to persuade GP to do them. It would be a good idea to post her results/symptoms so they can give you the best advice.
Thanks Imaan, did 20 000 a week keep your level ok?
We all need different amounts as a maintenance dose, mine is 5,000iu daily to keep my level over 100, others may only need 1,000iu, this is one of the reasons we need to retest twice a year (October/April) and adjust dose seasonally if necessary. If her level drops below 150 you can work out what she needs using the tables on the Vit D Council's website
She's taking Liposomal Vit B Complex (Yipmai on Amazon) with methycobalamin 500mcg and methylfolate 400mcg, plus other b vits.
She'll stay with that now and not add in any extra folate and see what that does to her folate level for next test. I'll make sure she keeps going on a B12 supplement and doesn't stop.
Should she be taking a higher dose of B12? Is there a max safe dose which folks here take? At this stage we don't know if she's absorbing what she takes - is there a test or way to find that out? And is it safe for her to increase if we don't know she's using it?
I'm gathering info from the PA group about MMA and IF tests which I'm going to ask GP for.
Yes she's taking 200mg elemental magnesium and 100mg Vit K M7.
I was on 10,000IU for 5 days which totalled 50,000 a week. When my doctor was satisfied with my results she dropped it to 20, 000IU a week for maintenance.
Sorry I was a scattered brain earlier when I responded and forgot one detail. My doctor said to take 20,000IU for maintenance but I didnt listen to her and took 30,000 a week. That came a lil over 4,000IU a day . Surprisingly that worked and kept me exactly hovering around the same spot blood test after blood test.
I just have to point out that I have digestive issues and I'm African. So she may require less. Maybe try a modest 2500iu or 3000iu a day and retest in 8 weeks.
My first thought is that her FT3, although raised since March, is still too low. It should be roughly approaching 75%.
For good health T3 must saturate nearly every cell in the body and it should be available in a constant and adequate supply
Some people may manage on 48% but the majority will struggle and your daughter's symptoms suggest the latter
Low cellular T3 is the root of many illnesses
From there we look at her FT4 which is miserably low this in turn is likely causing the low FT3....it may be that her T4 to T3 conversion is impaired but her thyroid is not producing enough T4. Little wonder she has various debilitating symptoms.
I'd suggest she needs to be prescribed Levothyroxine....her starter dose may depend on her age....50mcg id adult.
FT3 followed by FT4 are the most important results but unfortunately medics don't follow this but prefer the unreliable marker TSH as a means of diagnosis
SeasiseSusie has offered excellent nutritional advice so I won't go there!
In your shoes I would be insisting that your daughter's medics take cognisance of the above labs and to avoid any doubt, that they run their own thyroid panel....TSH, FT4and FT3....and medicate her accordingly
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Looking for advice for my daughter.
Follow on from Sister's results......
Hypo advice please for my daughter
results advice for my daughter please
