People on the Hypothyroid UK forum have suggested that I join this forum because of some test results that I received yesterday.
Long story short, I've finally been diagnosed with hypothyroid, but I'm still having awful problems with my memory, attention, concentration, finding words and ability to write (as well as loads of physical problems - I filled in the tick list on b12info.com/). This is very distressing as I'm an academic and my brain is essentially my livelihood and I am getting to the point I can't do my job.
So I requested B12 and folate testing in my latest round of tests as I was told that hypothyroid often goes hand in hand with other mineral/vit deficiencies. I saw the GP yesterday who said that my B12 and other levels were "fine" and that they were in range so he could do nothing about them and that I probably had CFS/ME or fibromyalgia.
For information, my test results are below. As you can see my B12 is just above the cutoff for "normal". However I'm being told on the hypothyroid forum that this level (and the others) are really low. Please can someone look at these and shed some light on why the GP won't treat me? And also how can I access the help I need?
Context for info, I'm 51, female, on HRT with lifelong severe allergies and depression.
Blood haematinic levels
Serum B12 213 ng/L (normal range above 203ng/L which is equivalent to 150 pmol/L)
Serum folate 6.3 ug/L (normal above 4.0 which is equivalent to 10 nmol/L)
Serum Ferritin 18 ug/L (normal range 11-307). This has dropped from 28ug/L in June
Iron (GP note "borderline low transferrin saturation")
Serum Iron Level 14 umol/L (range 2-32)
Serum TIBC 65 umol/L (range 28-54)
Iron Transferrin Sat 21.5% (range 22-36)
Vitamin D level (not measured last week, this is from June)
Serum Vit D3 level 71.5 nmol/L (normal range 50-)
Thyroid (I have been taking 25mcg levo for 6 weeks and have been put up to 50mcg today)
Serum TSH 1.841 mU/L (range 0.57-3.6)
Free T4 8.7 pmol/L (range 7.9-14.0)
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TheSnufkin
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Try to find out which b12 deficiency guidelines your ICB (Integrated Care Board) in England or Health Board in Scotland/Wales are using as your doctors are likely to refer to these.
If you can't find them by searching online or by searching forum threads then best bet is to submit a FOI (Freedom of Information) request to ICB/Health board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Some local B12 deficiency guidelines are not helpful , see blog post below.
Summary of BSH Cobalamin and Folate guidelines (a UK document) says
"In the presence of discordance between test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
OK, here's the symptoms from this list b12-institute.nl/en/symptom... that I'm suffering from. Some are more serious than others, but I have been living with all these for a while.
General symptoms
Exhaustion (strange ‘drained’feeling), general unwellness
headache, migraine
brittle nails
increased susceptibility to infection (urinary system, sinuses, upper respiratory tract)
hoarseness,
muscle weakness and pains
tinnitus
sensitiveness to cold (especially of hands and feet)
feverish symptoms, feelings of coming down with the flu
Neurological symptoms
Central nervous system
Neuropsychiatry (from the brain)
cognitive decline
memory (especially short term memory)
concentration problems
problems in finding the proper words (aphasia)
desorientation
(mild to severe) depression, moodswings, lability (weeping a lot), quickly irritated, outbursts of anger
anxiety,
altered mental condition, personality changes, sense of alienation, brainfog
Alzheimer-like symptoms (???)
Neurological (from the spinal cord, a.o. subacute combined degeneration of the spinal cord)
tingling in hands and feet
disturbed perception of the skin, numbness of the skin (paresthesia)
spastic and instability of gait (ataxia), (e.g. coordination of walking movement, people may knock objects from tables, walk into doorposts; clumsiness)
unvoluntary movements
Peripheral nervous system
Somatic nervous system (perception senses from the eyes, ears, skin (tactile) and sense of smell )
tingling hands and feet
numbness of hands and feet (feeling as if they are ‘asleep’)
muscle tremors on the skin (e.g. eyelid)
blurred vison (focus decreases), optic atrophia
hearing problems, distortion, tinnitus
reduced sense of smell, taste, touch
Autonomous nervous system
pattern of disturbed sleep rythm (unable to fall asleep, or to sleep throughout the night)
Digestive tract
nausea,
abdominal pain
glossitis (red, sore, smooth tongue, sometimes infected)
often mouth ulcers
(sudden) diarrhea or constipation (sometimes alternating)
"Honestly, I despair of the state of the UK healthcare system."
So do many of us.....
"In UK, people who are symptomatic should be treated even if within normal range for serum B12."
If you have time, have a look at the quotes from UK B12 documents I included in one of my other replies.
This diagnostic flowchart from a UK document suggests doctors should consider continuing treatment in people who are symptomatic for B12 deficiency even if results in second line tests such as MMA, Homocysteine and Active B12 (holotranscobalamin) are normal range, if there has been a good clinical response to treatment.
There have been forum members who had positive experiences with a private iron clinic in East of England. Hopefully one of those people with see this and send you a private message with details. I think forum rules prevent me from naming the clinic here.
I would suggest seeing a private iron specialist as transferrin saturation % is low. GPs have no real training in biochemistry, best not take chances - I found out the hard way.
If you do start on B12 injections, you'll need good levels of iron and folate to optimise treatment, which I discovered at great cost to my own health.
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