Here are my daughter's results with new results of thyroid hormones taken at 9.15am fasting. The results I posted last week were taken in the afternoon so we re-did the test.
Only these thyroid markers are different, I have kept the other vit and minerals etc. from the first test (too expensive to retest!).
Bearing in mind she is symptomatic with hair loss for several months (GP did blood test but don't know what for and it was normal), a lot of fatigue, coldness and salt cravings, light-headedness, bad brain fog, but not diagnosed, how would you interpret her results? She has significant sleep disruption (wandering alert mind, but not necessarily anxiety). The only thing 3 plus years of GP blood tests has come back with is Vit D.
I'm interested in conversion problems as I don't really understand it, and options for the best way forward from here given that GP is unlikely to give a levo trial (and is that appropriate anyway at this stage?).
Folate - Serum 8.91 ug/L (8.83 - 60.8) 0.2% - unit used on BH test is nmol/L. Thyroid Calculator uses ug/L does this make a difference?
Vitamin D 38 nmol/L - She's started (last week) 40 000 IU once a week and will retest. Could dose go higher still?
Ferritin 66.7 ug/L (13 - 150) 39.2%
B12 inactive 381 pmol/L (145 - 569) 55.7%
Magnesium 0.86 mmol/L (0.7 - 0.91) 76.2%
Saliva cortisol : will be uploaded later. Probably not much use as Medichecks and I didn't realise it was not a helpful test.
Would DHEA be helpful at this stage, being mindful of cost?
Background - aged 18
A very healthy child, issues only kicked off around age 14 after menstruation started (within a year or so) and also within a year or so of a very nasty flu bout. Whatever ails her has had a big impact on her life.
A psychologist has assessed her and suggests she consider getting an autism diagnosistic assessment. She has sensory issues which she says she has always had, but weren't noticeable to us.
She is lactose intolerant and stays away, gluten intolerant and has determined to stay away from now on.
She has polymorphisms in various methylation-related genes including MTHFR (hope I got that sentence right :)).
She is diagnosed with chronic migraine treated with monthly injections (Emgality) which help a lot.
She has epileptic activity measured on EEG but not classic seizures, she is not taking her Keppra medicine for it at the moment as it gives her headaches. Neurologist is happy to provide Keppra but says she doesn't fit an epilepsy pattern - my brain explodes at this point.
She has painful periods has tried progestrerone-only patch and mini pill which made her feel worse (woozy and even more tired). Currently not on anything.
She is quite allergic to dust, pollen and pets (we no longer have pets and don't smoke) permanently congested in her nose and she produces a lot of mucus, gp has prescribed a spray which isnt working well.
Ruled out: MCAS, MRI and CT scan clear. Under a neurologist for migraine.
I'm sorry for the long post but because she isundiagnosed I wanted to include as much of a picture as possible. We have been searching for several years to find what is causing the decline in her health.
Thank you very much for anything which occurs as to how thyroid fits in to her picture. Where should we go first from here?
Thank you.
The End😀
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Sneedle
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My understanding is that testing b12 active maybe a better marker of b12 status. I may be wrong. Either way her b12, folate and ferratin needs to be worked on.
As for vit d3, I'll share my story and hopefully it can help. I was given prescription D3 at 50,000 taken once a week and my numbers improved slightly. It took about 3/4 months to hit the range albeit at the low end.
My doctor switched me to 10,000IU taken 5 days a week for 3 months and my numbers started to really move. Then I had added in 100 mcg of k2 and 3 months later my levels were the highest they had ever been .
All to say my body prefers getting doses everday rather than once a week.
K2 and magnesium are cofactors needed for high doses of d3
Thanks Imaaan, that sounds like a good plan for the Vit D - it bears out my own experience of taking 12 000 IU daily for the last few months (by accident) and now my level is 80 (only 80!). So I'll see what I can do to get Vit D high levels daily into the mix. I note the need for K and magnesium. My daughter has trouble taking lots of pills and so if you or anyone know of a different way, please let me know. Are there Vit D patches?? I know there are sprays but taste is a big issue - trying to ensure compliance here😉
Hi Imaaan,Re your answer to me a few days ago, I'm looking at supplements for my daughter and saw you said
K2 and magnesium are cofactors needed for high doses of d3
Her vit d is a dreadful 38 so she's currently taking 40 000 IU in a once weekly dose. Her magnesium level is 0.86 (0.7-0.91) but I've seen that isn't very reliable.
Would you have any idea how much magnesium (of the right type - I'm looking into it) would be sensible to take?
I was and still am taking 330mg of magnesium glycinate in two doses from 2 supplement brands. My system is sensitive to high doses when it comes to certain supplements and magnesium is one of them. Since it can reduce blood pressure, I cant take more than 200mg at a time and cant take more than 330mg in total.I take 200mg during the day and 130mg at night.
Try to get a supplement that states on the label the amount of elemental magnesium in it and I prefer capsule form.
No problem. Also wanted to mention that I struggle with my k2 vital supplement when my ferratin isnt optimal. I tend to experience palpitations/tachycardia. I found briefly switching over to k2 in natto form helpful with the palpitations/tachycardia.
That's so good to know, my daughter is a bit 'palpitational' and I can be for that matter. But I checked and I think natto is soy which isn't good for her, so I guess I'll have to fill her full of steak for a bit first in case. And watch her ferritin. 👍
If she managed to get her vitamins optimal then her TSH might go up a bit. I do understand a bit about neurodivergent people, it being something that runs in my family. Neurodivergent people often have Ehlers Danlos Syndrome, also linked with fatigue and many other issues, another spectrum condition. The difficulty will be in finding something that she finds tastes OK, acceptable shape, size etc. Make a note of what is recommended for you, the % daily amount and compare supplements that way. There are liquids for many supplements particularly the B vitamins and she needs a good dose of folate inparticular, minimum 800mcgs but you will have to add a separate 400mcgs folate to most B complexes although Jarrows do a B12, 5 php & folate.
If she is lactose intolerant then she should probably trial a totally dairy free diet too. Many EDS people are intolerant to gluten, dairy & soy.
If she could eat chicken livers or pate then that would really help her ferritin, that or more red meat.
If she managed to get her vitamins optimal then her TSH might go up a bit.
That's a bad thing, right? TSH going up.
I've come across EDS and can't rule it in or out at the moment, if the thyroid stuff is cleared up one way or the other and she still has symptoms then I think we will be looking at that. I've got the name of a doctor in London who diagnoses it as there's no-one where we are (info I got from an aquaintance locally whose daughter has EDS).
Thanks for the supplement info I'm noting it all down - I just posted about transdermal patches for vitamins as I found some online (the brand is Patchworks) but it could be a load of rubbish! Patches would work well for her I think.
Her TSH going up would contribute to her getting a diagnosis possibly. Her folate is so low though that raising that to a decent level would help her a lot alone. Extra B12 wouldn't go amiss either. I have no experience of patches. Sounds like a great idea but if they work or not, especially for her folate where she might need a good dose is another thing.
This is the diagnosis criteria for hEDS. She may not fit it completely and fall into the hypermobility spectrum disorder category but if she has hypermobile joints then thats a huge clue. ehlers-danlos.com/wp-conten...
Adding in to the mixture of info pouring in - you're being so helpful it's just great! And everyone who's replied to me, I've gleaned a nugget and more with each answer.
Re Folate minimum 800mcgs for my daughter as you mention above - how soon would you add in another 400mcg every other day - after a week or so on the 800mcg starter dose?
Wait and see how she goes and how she feels. Take the 800mcg and retest. She should be able to tell you she feels better when her levels are raised better. I definitely felt the difference between the 400mcgs in a B complex and 1000mcgs, was like night and day.
The previous results were accurate, they just reflected a lower TSH because it was later in the day.
It's easy to get distracted by minor variations in test results, it's quite normal to be above average in some and below in others. Her vitamin D is a little low (some sunshine would help!). Her ferritin is higher than most women her age. (Magnesium blood tests don't reveal anything, they are a waste of time).
Her fT3 AND fT4 are both slightly low, I've noticed that this can present with hypo symptoms much stronger than the numbers might suggest (I'm a patient not a doctor). However, her TSH isn't as high as it might be when both fT3 and fT4 are below average. This could be due to impaired secretion from the pituitary. I don't think it is due to any damage to the pituitary. Sometimes TSH can be lower than expected (and have reduced bioactivity) when there are other problems that affect the brain / hypothalamus / pituitary.
It's possible she would get better with thyroid hormone supplementation (including T3) and she would probably need highish doses. I doubt you would get a doctor to try this. I don't understand the other conditions you mention but my guess is that they are affecting her ability to secrete sufficient TSH with full bioactivity. Things like poor sleep and migranes can affect TSH and growth hormone secretion with knock on effects.
Another possibility is endocrine disruption. There are chemicals in the environment that can disrupt the action of thyroid hormone. My hypothyroidism was caused by PBDEs, flame retardants used in soft furnishings between the 1970s and 2004. There isn't a test for this and endocrinologists have close to zero knowledge of it. It's worth trying to reduce any potential burden by damp dusting or HEPA vacuuming the house about once a week and opening windows for a few minutes when the weather permits, also removing any soft furnishing (including foam backed carpets) if they were manufactured prior to 2004. Any benefits would take several months to show up.
My best guess is that hypothyroid effects are most likely to be a secondary effect of her other medical problems and so ideally these would be sorted. In the end if nothing else works she should try thyroid hormone but it will be very difficult to get a doctor to do a trial of adequate doses.
hi Sneedle …. B12 was a big help to me … although my levels were ‘in range’ (only just as very low) the Nice guidelines are to treat if symptomatic with every other day injections until patient improves. Watch Sally Patchlock on YouTube … very interesting and true story…
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