I’m over from the Thyroid UK group. DH has autoimmune thyroiditis, NCGS and psoriasis. And a whole host of symptoms having been misdiagnosed for ages. He’s on levothyroxine but his memory loss is way more than you’d normally see with thyroiditis and the neurologists aren’t sure what it is. We’re seeing the endo tomorrow and probably trying T3. He’s already on LDN.
Remaining symptoms are:
Fatigue, with associated cognitive slowing which worsens from 5-6pm; exhausted by 7 and in bed by 8pm. Quite perky in the morning after sleep; easily exhausted by aerobic exercise though strength training is better
Dizziness if bending over which increases with fatigue
Cold hands - sometimes icy
Tinnitus- worse in the evening with fatigue; if really ill after a virus, this can result in hearing so distorted he gets auditory hallucinations and is super sensitive to sound
Clumsiness - is dropping things a lot
Memory loss - this is the most worrying; long term loss is worst and is at amnesia levels; nobody understands it - neurologists and psychologists don’t know what it is, not dementia or CJD etc
The first response of the psychologist was to tell me to get B12 checked. His B12 is always upper end of the range. Folate has been low but he has a methylated B complex supplement and all levels now good.
Do the above symptoms strike a chord around functional PA? They could easily be thyroid-related but the memory loss is so unusual. Thinking of asking the endo to order further testing as he’s always suspected there is something else going on too. Would we see other symptoms too if it was functional PA?
Thanks 😊
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Zmalp
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Hi zmalp glad you joined. I think i already mentioned this but my levels were in the 800-900s thanks to b12 tablets but i got so demented i couldn't follow the plots of 30 minute sitcoms, recognize colleagues, or do simple arithmetic. GP did an alzheimer's screening which i somehow passed but i was still very bad. I mixed up words (sometimes still do). Then one day I woke up and the outer half of both arms were paralyzed from elbow to my pinky & ring finger - no feeling and zero muscle function. Years before that was when the clumsiness and fatigue etc started. Every single B12 related test was normal - tested privately because GP refused to believe it was B12. I only know it's b12 related because I responded immediately to injections (which i also bought on my own).
One of my relatives had exclusively memory issues. The fatigue, tingling and all the rest came years later.
Anyway as Nackapan says, each person presents differently.
Push for testing as she mentioned. And then I would push for a trial of injections regardless of the results. B12 is safe and nontoxic even at high doses.
From personal experience, I can say it is possible to have severe B12 deficiency symptoms with normal range serum B12 results.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Functional B12 Deficiency
You may want to look into Functional B12 Deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the patient develops deficiency symptoms. MMA, Homocysteine and Active B12 (holotranscobalamin) blood tests may help to diagnose Functional B12 Deficiency.
Do you mind me asking which country you are in?
The reason I'm asking is that patterns of treatment for B12 deficiency can vary between countries and knowing which country you are in may help people to post relevant info.
Are his symptoms consistent with B12 deficiency?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Many on this forum report thyroid problems as well as B12 deficiency.
It's also common to have folate, iron and Vitamin D deficiencies. Have these been checked?
In a person with both folate and B12 deficiencies, B12 treatment should be started first. Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
Health professionals can join PAS as associate members, no charge. Associate membership is open to health professionals worldwide.
2) Club B12 is a worldwide group of researchers, doctors and other interested people who are looking into B12. They have regular zoom meetings and a conference in UK September 2023.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Wherever you are in the world, I suggest trying to find out if there are any national or regional guidelines on treatment and diagnosis of B12 deficiency.
There's a lot of useful info in the pinned post Various B12D/PA resources on this forum.
If you're in UK, there's a lot more info I can pass to you.
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