I’m sorry I write a long post. I have given my history and current health and at the bottom all of my test results. I’m in such a very desperate situation I do not know what else to do. I am in a very bad way health wise and I am reaching out to you in hope that you will take a couple of minutes to read this please. Your time is much appreciated. I need to find someone who truly thinks they can help me, I have seen so many doctors, specialist, nationalists etc. over the years and I need to find someone who really feels they can help me.
I started to get unwell at age 21 I am now 30. ….I have lost so much of my life and I am scared I am never going to get better or managed. It has got the point where I am 90% house bound and about 60% bedbound. My partner of 11 years left me last year because he couldn’t deal with my illness, I don’t blame him, and I have now through my local authority set up a carer to help me because I am on my own with 2 young children age 7 and 4. I also now get help from a nanny who my local authority pay towards who take my children to and from school. I am so pleased that i have finally got the support in place to ensure normality remains as much as possible for my children and I am hoping that I can now try and focus on me a bit more. But I am so scared because I can feel how sick I am getting and in all honesty I think sometimes my kids would be better without me because they have no life with me which completely breaks my heart. I am scared I am going to keep deteriorating and eventually not be able to look after my children anymore and I feel so frustrated because I just feel if I get the right support I could get better.
I don’t even know where to begin with telling you how I’m feeling and what’s going on, i will likely miss some things but here’s the most of it;
Chronic fatigue
Brain fog
Joint pains
Muscle weakness
Dizziness
Excess sweating in heat
Excessive drowsiness and blurred vision after eating carbs
Nausea and feeling really fatigued after eating fats like bacon
Chronic bloating
Foul smelling wind
Constipation
Reactive hypoglycaemia with high spikes to around 200 where i experience extreme drowsyness and have to sleep.
Then subsequent drops in bloodglucose with symptoms of high and low glucose
Low blood pressure 90/40
Chronic drowsiness
Sores on my tongue
Eyes sensitive to light
Gallbladder dyskinesia low ejection rate
Slowed down
Feeling cold
severe pmt, extremely tearful for days at a time and very depressive
severe anxiety , agoraphobia and panick attacks during ovulation, high estrogen parts of my cycle
weak giddy during my menstruation
cold, anxious, bloated, post prandial tierdness, tounge sores increase during follicle phase and reduce during menstruation
What I’ve done so far;
From the start of my symptoms it took 5 years and flying to France to see a specialist that I was diagnosed with adrenal insufficiency and put on hydrocortisone. I was told I was borderline and my adrenal saliva profiles the 5 years prior to this diagnoses had shown low ranges. I actually only started the hydrocortisone one year ago. This has help the smallest bit at some points in the day for an hour but I actually think I am a lot worse since starting this.
I was living off porridge with flaxseed for breakfast then oatcakes with almond nut butter during the day and then chicken and veg in the evening for 2 years. But back in June I become so extremely unwell and had an adrenal crises and ended up in hospital. I came out and was bed bound and and I decided to change my diet. I am extremely underweight but I react to so much food by sensitivities and also blood glucose fluctuations that’s why I lived on this diet. But I realised I couldn’t forever.
I introduced more protein and fats such as chicken, eggs, bacon, avocados and cashew and almond nuts but I actually feel like my body cannot digest this food. I eat the food and fall to sleep, like the energy I have is all getting used to digest and I then feel nauseous and bloated, burning in my tummy and have floating stools. So I now have gone on to eating homemade soups with chicken avocado, greens and in the evening chicken and vegetable soups and stews.
I have noticed a mild improvement in myself since starting the soups and stews and redusing my carbs and cutting out gluten. I don't find I am as sleepy after eating. I have completely cut out gluten including oats which I think has helped. But I still feel bloated, sick, burning in my stomach after some meals on top of all the other symptoms I am living with.
I know my adrenals are shot but i can tell when im low cortisol and some of these symptoms are notlow cortisol and not relived from taking hydrocortizone.
I know my whole bodies a mess and I was trying to sort out my cortisol for years and ignoring my digestion but I do think I need to focus on this to. But I am at such a loss and feel so unwell and so overwhelmed with trying to figure out what to do I just can’t cope with it anymore, I was always so strong and for 9 years have researched and not gave up hope but I just feel I can’t do this anymore, I’ve not got the physical or emotional strength anymore and I know if I get anymore sicker I will lose my children because their father will just take them from me and then I will have nothing.
I have paid so much over the years in tests and I have been told I am borderline hypothyroid, borderline diabetic, have mild pcos, endometreoisis and low vitamin d and ferritin and other things to but I just feel I cant do this on my own anymore I just feel so overwhelmed.
Please can you help me? . I’m sorry it’s like an essay, and I’m sorry to bother you but thank you for your time in reading this. Im hoping I can find a doctor in uk, hopefully London, ive been reading about Alyssa burns hill but im scared of her not helping me.
here are some of my test results below, there are a lot of results biut i felt itbest to include everything....thank you..
I paid for a whole series of blood tests. They was taken on day 4 of my period, I had fasted for 12 hours. I was salt fasted for 24 hours and remained sitting up prior to the test and during the test so the aldosterone and renin tests were accurate. The bloods were taken at 9am. I take hydrocortisone 15mg a day and took my last dose of 2.5mg at 8pm the night before the test. I was taking no supplimenst or anything else around the time of the test.
HORMONE PROFILE
Aldosterone 399.0 pmol/L Upright 100 - 800 pmol/L Supine 100 - 8450pmol/L
RENIN 66.2 mU/L Upright 5.4 - 60 mU/L Supine 5.4 - 30 mU/L
Aldosterone:Renin ratio 6 <80 Conn's Unlikely
FSH 6.1 U/L
LH 11.9
Oestradiol 106 pmol/L
Prolactin 144 mU/L 102 - 496
Cortisol (basal) 449 nmol/L (171 - 536) (BASAL 171-536, EVENING 64 - 327)
Free T3 4.8 pmol/L (3.1 - 6.8)
Thyroid stimulating hormone 2.310 mU/L (0.270 -4.200)
Free T4 14.0 pmol/L (12 - 22)
FULL BLOOD COUNT
WBC 4.90 x10^9/L (4.0 - 11.0)
RBC 4.43 x10^12/L (3.80 -5.80)
Haemoglobin 135 g/L (120 - 150) R
HCT 0.41 ratio (0.36 -0.46)
MCV 93.0 fL (80.0 -100.0)
MCH 30.4 pg (27.0 -32.0)
MCHC 326 g/L (315 - 345)
Platelets 241 x10^9/L (140 - 440)
RDW 11.8 (0.0 - 14.0) **
MPV 9.3 fL
Neutrophils(Abs) 2.58 10^9/L (2.0 - 7.5)
Lymphocytes (Abs) 1.69 10^9/L (1.5 - 4.0)
Monocytes (Abs) 0.44 10^9/L (0.2 - 0.8)
Eosinophils (Abs) 0.22 10^9/L (0.0 - 0.4)
Basophils (Abs) 0.02 10^9/L (0 - 0.1)
CRP <0.3 mg/L (0 - 5)
BIOCHEMISTRY
Sodium 139 mmol/L (133 - 146)
Potassium 4.2 mmol/L (3.5 - 5.3)
Urea 4.9 mmol/L (2.8 - 7.8)
Creatinine 56 umol/L (45 - 84)
estimated GFR (eGFR) >90 ml/min
LIVER FUNCTION TEST
Total bilirubin 5 umol/L (0 - 21)
Alkaline phosphatase (ALP) 65 Iu/L (30 - 130)
ALT 11 Iu/L (0 - 33)
GGT 8 Iu/L (UP TO 40)
Total Protein 78 g/L (60 - 80)
Albumin 49 g/L (35 - 50)
Globulin 29 g/L (18 - 35)
AST 16 Iu/L (UP TO 32)
Lactate dehydrogenase 171 Iu/L (135 - 214)
Serum Calcium 2.39 mmol/L (2.2 - 2.6)
Albumin 49 g/L (35 - 50)
Adjusted Calcium 2.30 mmol/L (2.20 -2.60)
Uric Acid 278 umol/L (140 - 360)
Glucose 3.8 mmol/L (4.2 - 6.1) **
LIPID PROFILE
Cholesterol 3.94 mmol/L (0.0 - 5.2)
Triglycerides 0.54 mmol/L (2.26) *
HDL cholesterol 1.41 mmol/L (> 1.68)
Cholesterol/HDL ratio 2.8 ( <5)
Low density lipoprotein 2.28 mmol/L (2.5 - 4.5) **
% HDL/Total Cholesterol 35.79 %
B12 687 ng/L (191 - 663) **
Folate (serum) 5.4 ug/L (4.6 - 18.7)
IRON AND UIBC
UIBC 60.0 umol/L
Iron 17.0 umol/L (6.6 - 30.4)
Total iron binding Capacity 77.0 umol/L (41-77)
Transferrin saturation 22.1 % (20-55)
Ferritin 13.1 ug/L (13 - 400)
Ferritin 13.1 ug/L (13 - 400)
Vitamin D 24.5 nmol/L Reported
<25 nmol/L: Severe Vitamin D deficiency
25-75 nmol/L:Borderline ranging to insufficiency
75-200 nmol/L: Optimally replete
>250 nmol/L:Possible toxicity, if sustained
This test was taken a couple of months later:
Autoimmune profile – normal no action
Mitochondrial antibody level – negative
Anti smooth muscle autoantibodies – negative
Panetal cell autoanitibodies – negative
Reticulin antibody titre – negative
Anti liver kidney micro ab lev – negative
Serum vitamin D – 71 nmol/l
Erthrocyte sedimentataion rate – 9 mm/h (0-15)
Total white cell count - 6.5 10*9/L (3.5-10.0010*9/L)
Red blood cell count - 4.14 10*12/L (3.8-5.0010*12/L)
Haemaglobin estimation - 119g/L (115.00-145.00g/L)
Haematocrit - 0.360L/L (0.36-0.46L/L)
Mean Corpuscular volume (MCV) - 87Fl (84-98)
Mean Corusc. Haemoglobin (MCH) - 28.7pg (27.5-32)
Mean Corpusc. HB conc (MCHC) - 331g/L (300-360)
Red cell distrubition width - 15.1% (<14.50%)
Platelet count - 194 10.9/L (150-400 0010*9/L)
Neutrophil count 3.3 - 10.9/L (1-3.5010*9/L)
Lymphocyte count - 2.0 10*9/l (1-3.5010*9/L)
Monocyte count 0.8 - 10.9/L (0.31.0010*9/L)
Eosinophil count - 0.3 10*9/L (<0.401089/L)
Basophil count - 0.1 10*9/L (<0.1010*9/L)
Serum folate - 4ug/L (3-20)
Serum ferritin - 8ug/L (10-200)
Vitamin B12 - 632 ng/L (200-910)
TSH - 3.04 mu/L (0.35-5)
Free T4 - 11pmol/L (9-22)
Liver function tests
Total bilirubin level - 7umol/L (1-21)
ALT - 9 U/L (1-50)
Blood calcium level 2.16 mmol//L
Corrected serum calcium level – 2.14 mmol/L (2.20-2.60)
Serum inorganic phosphate - 1.44mmol/L (0.8-1.50)
Serum alkaline phosphatease – 54 U/L (30-130)
Serum total protein 69 g/L (60-80)
Serum albumin - 40 g/L (35-50)
Serum globulin - 29 g/L(22-40)
Serum sodium - 136 mmol/L (133-146)
Serum potassium - 4mmol (3.5-5.3)
Serum urea level - 3.8 (2.50-7.8)
Serum creatinine - 49 umol/L (20-103)
Plasma C reactive protein - 0.3mg/L (<5.00mg/l)
Here are all of my thyroid tests over the years:
APRIL 2008
Total T4- 110 (58 - 154nmol/l)
TSH 0.92 (0.4 - 4 mIU/L)
Free T4 21.4 (10 - 22 pmol/l)
Free T3 4.59 (2.8 - 6.5 pmol/L)
FT4:FT3 ratio 4.68 (2 - 4.5)
Reverse T3 not done
Thyroglobulin TG <20 (0 - 40 IUmL)
Peroxidase TPO 11.5 ( 0 - 35 IUml)
JANUARY 2011
Total T4- 78.9 (58 - 154nmol/l)
TSH 0.758 (0.4 - 4 mIU/L)
Free T4 12 (10 - 22 pmol/l)
Free T3 3.96 (2.8 - 6.5 pmol/L)
FT4:FT3 ratio 3.0 (2 - 4.5)
Reverse T3 0.32 (0.14 - 0.54pmol/ml)
Thyroglobulin TG <20 (0 - 40 IUmL)
Peroxidase TPO 11.5 ( 0 - 35 IUml)
SEPTEMBER 2011
TSH 0.82
Free T4 12.3
Free T3 3.4
DECEMBER 2011 - whilst on the contraceptive pill
TSH 0.89
Free T4 16.3
MAY 2012 - whilst on the contraceptive pill
TSH 1.05
Free T4 15.8
OCTOBER 2012
Total T4- 80.6 (58 - 154nmol/l)
TSH 0.910 (0.4 - 4 mIU/L)
Free T4 12.7 (10 - 22 pmol/l)
Free T3 4.66 (2.8 - 6.5 pmol/L)
FT4:FT3 ratio 2.7 (2 - 4.5)
Reverse T3 NOT DONE
Thyroglobulin TG <20 (0 - 40 IUmL)
Peroxidase TPO 11.3 ( 0 - 35 IUml)
JANUARY 2014
TSH 2.310
Free T4 14
Free T3 4.8
FEBRUARY 2014
TSH 1.28
Free T4 10.9
JUNE 2014
Total T4- 56.6 (58 - 154nmol/l)
TSH 1.58 (0.4 - 4 mIU/L)
Free T4 10.5 (10 - 22 pmol/l)
Free T3 4.85 (2.8 - 6.5 pmol/L)
FT4:FT3 ratio 2.2 (2 - 4.5)
Reverse T3 0.23 (0.14 - 0.54pmol/ml)
Thyroglobulin TG <20 (0 - 40 IUmL)
Peroxidase TPO 15.1 ( 0 - 35 IUml)
July 2014
TSH - 3.04 mu/L (0.35-5)
Free T4 - 11pmol/L (9-22)
Thank you