Will I ever start feeling better?

Hi everyone

I can't tell you how relieved I am to have found this forum. Long story short, I have been filling ill since I was 30. I am 35 on Friday and may be slowly getting somewhere but that's down to the fact I have been fighting for help from my GP and various hospital departments.

When I was 30, I got up one morning feeling fine. I was just about to head downstairs to the bathroom and before I knew it I was tumbling down, head first with everything spinning around me. I landed in a mess at the bottom smashing my head on the tiled floor in the process. My health has never been the same. I am hypermobile, I have been told I have hypermobility autonomic dysfunction by UCLH and I have been tested for POTS (which I don't have thankfully). After a year of being dizzy constantly, unable to work or go out alone I started to feel better in that area of my health. However, on an ongoing basis I have just felt ill.

My symptoms of feeling ill are extreme fatigue, sore limbs/muscles. No day is ever the same. One day I can be fine, the next my legs ache and the next my wrists hurt. I have told anyone who will listen how I feel and I honestly reckon they think I am crazy. I know I'm not.

My mood has been affected dramatically over this period of time. I have always been 'sensitive' but it has become worse. I have to train myself not to think of all the bad things that have happened to me in my life. I have had to learn how to be a positive thinker and not to dwell on things. Just last year I felt like I had lost all emotion, I literally felt dead inside. This isn't great, I used to be lively and outgoing, now when I mix socially I don't bring much to the table at all.

More recently, I have struggled with what I can only say is anxiety but in reverse. When something good happens I shake, I can't relax and I can literally feel the blood pumping around my body.

I have had so many tests done, I am not sure that they are the right ones though. Only recently I was prepared to pay Blue Horizon for their full Thyroid package as I am sure I have an issue. My mum has to take Thyroxin and she said that she thinks I am suffering in that area. I managed to convince my GP to take some tests to save me paying. They did and within 24 hours I was called back in as my Folic levels were unusually low. I already have low calcium levels and have been taking supplements for almost 2 years. That dosage has had to be doubled recently as I still was reading low levels.

I have all the blood test results from my recent test, including the 'normal' ranges, I was wondering if anyone can shed any light on them? I will put them at the bottom of this message. What is strange is that the very unhelpful doctor at my endocrinology unit wrote to me today to tell me he is discharging me as all my results on tests he took a week earlier than those listed below came back normal. Including my calcium which below is still showing as low. I am in a right mess, I can't carry on in this way where I fall asleep in the middle of the day without warning, lie awake at night and have the pain and discomfort that stops me from being me. I am a changed person and I hate it.

If anyone has any feedback, advice or anything I would really appreciate it. I am running out of avenues now.

Here are my results:

B12/folate level (XalqS)

Serum vitamin B12 level (XE2pf) 170 ng/L (150 - 99,999)

Serum folate level (42U5) BELOW RANGE 3.9ng/ml (4.2 - 19.8)

Full blood count(424..)

Total white blood count (XaldY) 9.4 10^9/L (4 - 13)

Haemoglobin concentration (Xa96v) 13.6g/dL (11.5 - 16.5)

Red blood cell count (426..) 4.53 10^12/L (3.9 - 5.6)

Haematocrit (X76tb) 0.406 (0.35 - 0.47)

Mean cell volume (42A..) 89.6 fL (73 - 100)

Mean cell haemoglobin level (XE2pb) 30 pg (26 - 32)

Mean cell heamoglobin concentration (429..) 33.5 g/dL (30 - 35)

Red blood cell distribution width (XE2mO) 13.1% (11.8 - 14.8)

Platelet count - observation (42P..) 254 10^9/L (150 - 500)

Differential white blood cell count (42I..)

Neutrophil count (42J..) 5 10^9/L (1.5 - 8.5)

Lymphocyte count (42M..) 3.4 10^9/L (1.5 - 4.5)

Monocyte count - observation (42N..) 0.6 10^9/L (0.2 - 0.8)

Eosinophil count - observation (42K..) 0.4 10^9/L (0 - 0.5)

Basophil count - (42L..) 0 10^9/L (0 - 0.1)

Erythrocyte sedimentation rate (XE2m7)

Erythrocyte sedimentation rate (XE2m7) 2 mm/hr (1 - 20)

Serum ferritin level (XE24r) 61 ng/ml (15 - 150)

Plasma glucose level (XM0ly)

Plasma glucose level (XM0ly) 4.6 mmol/L (3 - 6) fasting

Liver function tests (X77WP)

Serum alkaline phosphatase level (XE2px) 54 iu/L (30 - 120)

Serum total bilirubin level (XaERu) 10 umol/L (3 - 20)

Serum albumin level (XE2eA) 42 g/L (35 - 50)

Serum alanine aminotransferase level (XaLJx) 11 iu/L (0 - 40)

Serum magnesium level (XM0m2) 0.77 mmol/l (0.7 - 1)

Thyroid function test (X77Wg)

Serum TSH level (XaELV) 2.89 miu/L (0.25 - 4)

Serum total 25-hydroxy vitamin D level (Xabo0)

Serum calcium level (XE2q3) 2.2 mmol.L (2.2 - 2.6)

Serum adjusted calcium concentration (Xabpk) BELOW RANGE 2.16 mmol/L (2.2-2.6)

Serum inorganic phosphate level (XE2q4) 1.03mmol/L (0.8 - 1.5)

1 Reply

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  • Welcome to the forum, Fabian82.

    TSH 2.89 indicates your thyroid is beginning to struggle to produce hormone (T4 and T3) but doesn't currently indicate primary hypothyroidism which NHS doesn't diagnose until TSH is over range ie >4.0. TSH testing doesn't exclude a diagnosis of secondary hypothyroidism. It is worth asking your GP or endo to consider pituitary dysfunction after your head injury may be causing secondary hypothyroidism which can be confirmed or ruled out by doing a Free T4 blood test to check T4 level. If your GP or endo won't oblige you can order a private thyroid test via thyroiduk.org.uk/tuk/testin...

    Severe symptoms of calcium deficiency disease include:

    confusion or memory loss.

    muscle spasms.

    numbness and tingling in the hands, feet, and face.

    depression.

    hallucinations.

    muscle cramps.

    weak and brittle nails.

    easy fracturing of the bones.

    Hypocalcemia: Symptoms, Treatment, Causes, & More - Healthline

    healthline.com/health/calci...

    Raising your dose should improve symptoms.

    Low calcium and low vitamin D can indicate hypoparathyroidism. Have either your GP or endo tested parathyroid hormone (PTH) along with calcium to rule out hypoparathyroidism

    You haven't included the result for vitamin D.

    My GP prescribed 5mg folic acid to correct folate deficiency. I recommend you ask for advice about folate deficiency and and very low B12 on healthunlocked.com/pasoc

    All your other results appear to be within normal range.

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