I'm Hannah, I'm undergoing investigation to find out what's going on but I suspect something autoimmune/connective tissue as I've had a million arthiritis tests and nothing has come from them.
I have mild hypermobility, chronic widespread joint pain and stiffness, reduced mobility, muscle pain and spasms, reynauds, IBS, breathlessness, fatigue, trouble sleeping, frequent minor illnesses (cold & sore throat) and pins and needles and loss of sensation in my hands and feet.
I find heat and pacing and grading activites help but any further advice would be welcomed. My doctor has instigated blood tests to check inflammation levels but I have no idea what else would help come to an explanation or diagnosis, are there any posts explaining people's diagnosis stories?
I'm feeling a little lost, and given this is the first time in years a doctor has taken me seriously I want to get the most out of it.
Thanks,
Hannah
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HannahJG
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My bloods are booked in for next Wednesday but when I went with similar but less acute problems last October my results came back 'normal' (see photo) with the exception of folate.
I've completed a 3 month course so we'll see how they come back next week.
Your B12 was quite low. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml (ng/L) to at least 450 pg/ml (ng/L) because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
However, be aware that taking folic acid can mask signs of B12 deficiency.
You should also have Vit D tested.
If you are having thyroid tests then we always advise when booking thyroid tests, we advise:
* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism (or looking for an increase in dose of thyroid meds or to avoid a reduction) then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Got my results back today but they only tested serum TSH level - or that's the only thing they're showing me anyway. Says it's within the normal range and nothing else will be done.
Serum TSH level (XaELV) 1.9 miu/L [0.3 - 4.5]
Also that my full bloods came back and they're normal too. Something has to be going wrong if i'm in pain and having all these symptoms. I'm totally fed up
Test resultErythrocyte sedimentation rate;Full blood count Report, Normal, No Further Action (Patient Informed)
Many labs/GPs wont do further tests if TSH is within range. Your best bet is to do a private test with one of our recommended labs to get the full thyroid panel. As you also need Vit testing, it might be cheaper to go for the full thyroid/vitamin test with Medichecks or Blue Horizon.
Medichecks has a good offer on at the moment with their Thyroid Check ULTRAVIT
They are basically the same test but with the following small differences:
For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Serum B12. Medichecks does Active B12.
Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
If you went for Medichecks full thyroid panel it's £59 and the Vit D test is £39 with them or £29 with City Assays.
Out of curiosity did you ever find out more about your symptoms. I do have hashimotos and my levels are now considered nearly optimal with my current dose. All along I was waiting to feel better following the thyroid trail but my endocrinologist says there's nothing more to do because my levels are perfecf. I'm headed back to rhumatologist I guess. I have all those symptoms that you have and I haven't found any answers yet. She suggested I test for Lyme disease
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