Hi, I’m hoping some people can hopefully give me some advice please regarding treatment. My history: I’m 30, diagnosed with secondary adrenal insufficiency via an insulin tolerance test. I have borderline low hypothyroidism, low prolactin. No cysts. I am 40kg, 5ft tall so I am very petite.
I currently take hydrocortisone after each meal 8am-4mg, 12m-4mg, 3.30pm-4mg, 8pm- 3 mg. I have to take my medication following food to reduce the intensity of the spike. I also cannot tolerate more than 5mg at one time without getting awful side effects of anxiety and panic when the tablet peaks in my blood at 30mnutes. Each doe I take only lasts around 2.5-3 hours.If I am to take 10mg at once I feel ‘high’ and ‘rushy’ and anxious when it kicksin then after 3 hours its starts to drop and I feel low cortisol again.
I feel like I am swinging all day every day. I am still so fatigued, have very bad dizziness and brain fog, light sensitivity, blurred vision, weakness, leg and arm cramps, reactive hypoglycemia and achy.
4 weeks ago I ended up having an adrenal crises, yes it was horrendous and scary but I got through it and in a way it was a blessing because it has been a BIG wake up call that I need to stop being scared of trying new medication in fear of getting sicker and realised I have got to try and get myself well.
I have been so unwell since I was 21 I am now 30. ….i have lost so much of my life and I am sacred I am never going to get better or managed.
My consultant prescribes medrol a while ago and I have been too scared to start to but after my crises I started it. I am now taking 1mg Medrol in the morning and then 3 more doses of hydrocortisone at 4mg, 4mg and 2.5mg…
When I first started the Medrol I could feel it working but now its like I can not feel it and by 4 hours later I am feeling hypoglycaemic, weak nauseas etc… I am feeling so unwell after I eat a meal, like all my bodies energy is wiped out from digesting my food and im now lying in bed weak, giddy and lots of pain cramps in my arms and legs…
I have low blood pressure and my consultants suggested
fludrocortisone. I just don’t know what to do anymore. My consultants saying I shouldn’t feel so unwell and im just so lost.
Has anyone been on Medrol and can give advice on this. Im very petite, 5ft and 40 kg…I just feel so up and down and struggling with it all and also feel my symptoms get worse or better during certain times of the month..
i also cannot tolerate many carbohydrates because my blood glucose pikes very high at 1 1/2 hours post eating and drops every low by 21/2-3 hours.
I’ve now had to set up a backup carer to help when am unwell because i am on my own with 2 young children. I am getting help with them now and also trying to get support for taking them to school…im slowly getting there
I have also done a month of blood tests looking at progesterone and estrogen and have found a patern in some of my symptoms.. I most definitely feel my worst when I am coming off my period, stopping bleeding where I start to feel cold and foggy and nauseous I then when ovulating feel at my worst and the 2 dasy when my estrogen was highest I had severe anxiety, tremor, agoraphobia, intense drowsiness after eating and these symptoms always disappear once I ovulate and start seeing progesterone mucous . Apart from these symptoms which come on with my cycle I suffer with all my other symptoms throughout the whole month with increase and decrease throughout my cycle.
I have included a lot of tests below and any one who feels they can help would be so much appreciated. Thank you for your time
These are my most recent blood test
June 20th 2014
Autoimmune profile – normal no action
Mitochondrial antibody level – negative
Anti-smooth muscle autoantibodies – negative
Panetta cell autoantibodies – negative
Reticulum antibody titre – negative
Anti-liver kidney micro ab lev – negative
Serum vitamin D – 71 nmol/l
Erythrocyte sedimentation 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)
Haemoglobin 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 distribution 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)
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