Can anyone help with my test reults and medication please

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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

 

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6 Replies

  • Posted

    Hi b.boop, gosh I hope someone can help you.  Have you contacted your country's pituitary gland assoc and talked to them - they may have someone with more experience with these issues.  My experience with a pituitary gland microadenoma affected my prolactin.  Have you had an MRI to see if you have a tumour on your pit gland that is causing this?

    I assume you are being seen by an endocrinologist.  Perhaps you should ask for a second opinion - fresh eyes and knowledge is often useful.

    In the meantime, I can tell you what worked for me regarding vit D - even 3 vit D tablets a day did not work for me so dr told me to take drops instead.  She recommended a practitioner's label - Bio-Ceuticals D3 Drops Forte.  I take 4 drops per day and blood tests show that my levels are increasing dramatically.

    I really hope someone can help you.

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    • Posted

      Hi thanks for your message.  I live in surrey/south london in UK.. when i was firstunwell i did contact the Pituitaryfoundation and was recommended a endo but i just find im not getting much support with her. 

      I had an MRI and everythign was fine, thank god...

      i have been taking vitamin d drops myself and they are working nicely toraise my vitamin d, but i just cannot raise my iron ferritin levelas at all..

      Do you live in the uk..Thanks again

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    • Posted

      No, I am in Australia.  My knowledge is mostly about Haemochromatosis which is too much ferritin iron.  Your iron is more than half way in the range.  I am surprised that the normal range for ferritin iron is 13-400.  In the Haemochromatosis world, it is generally reported as between 10-150 for a menstruating woman.  Over 200 is regarded is starting to get in the too high range.

      Your transferring saturation %, which dictates whether you are likely to have Hereditary Haemochromatosis (HH) is ok too.  Again the normal range quoted is different.  If checking for HH, >50 is dangerous, sometimes >45 is viewed as too high.  A high TS% allows your ferritin iron to become too high if you have HH.  If your ferritin iron level was in the high range but your TS% was not, then your dr should be treating you for fatty liver, inflammation, infection, malignancy.  Your haemoglobin is good, so really you do not seem to have an iron problem.

      Ok, just rechecked your serum ferritin which is 8 which comes under the normal range of 10-200.  Has your endo or pathologist said this is a problem?

      As I have HH, and it was diagnosed 9 years too late, the highest recorded was >999, I was in a very bad way, with extreme fatigue to the point of slurring and staggering, foggy brain, poor memory, terrible pain in my whole body like muscles and bones, and one day I stepped sideways and one of my hips broke up because my blood was so thick with iron that it could not get into the finer capillaries to feed the bone - the bone died.  I had to have both my hips replaced when I was only 47.

      Now 23 years after being "deironed" I am still feeling fatigued and achey all over so much that I could not continue working and I have very short days.  My thinking and concentration is not working very well either.  I keep getting more problems related to organ damage from the early iron overload.  All my bloods are NORMAL too!  I am sharing your frustration.

      It is believed that the iron overload damaged my pituitary gland and caused the micro tumour.  All in all, your blood results indicate you don't have that problem, thank goodness.

      For a while, I thought my problems were adrenal related but tests kept showing otherwise.

      I also feel wacked after eating as if all my blood drains from elsewhere to go to my stomach to help digest ... just like you said.

      HH is an iron-metabolic disorder - we cannot metabolise iron properly and so absorb all of it into our organs.  Among a 'million' other things it causes abdominal pain and swelling, although I cannot find any research on how it actually does that.  It is just accepted as being one of the symptoms.

      I have found though that we are prone to Helicobacter pylori which thrives on iron.  It can make you anaemic if you don't have HH!!!  HP can cause all sorts of allergy problems too which make you think you are allergic to foods but it is really HP, even causing a persistent cough and/or sniffles.  Ask your  dr to check you out for that.  Generally it is a breath test which can sometimes be faulty - an endoscope is probably better.  I keep getting repeat doses of HP.  I have found that I cannot tolerate sugars and starches too, not just gluten.  I do not think I am celiac though which is different.

      I have started using coconut oil as well - in cooking and just having a spoonful or two in yoghurt, a cup of warm soy milk (although it sits on top), on my green veges, anyway that I can include it.  It can balance your cholesterol - in my case I need my good cholesterol increased, and via cholesterol and a pregnenolone, DHEA pathway, I am hoping it will provide some balance to my oestrogen/progesterone.  I am on HRT but I have a problem keeping enough in my body.  Anyway, check out coconut oil to see what good it can do to you.  I also wipe some over my hair before I wash it as it has a better result than using conditioner for me.

      Apart from seeing an endocrinologist who monitors my pit gland, I also see a haemotologist/oncologist who monitors my HH.  Maybe a visit to one of those to check over your blood tests will be valuable to you.

      As I was totally amazed at what HP can cause to the body, you may find that there is something totally different to what you would imagine is happening.  Your meds sound like a mess as well and perhaps are reacting to something completely different going on in your body that has not been checked yet.

      Keep fighting on to find a solution - it is the only way to survive.  If you don't fight, your drs won't either.

      PS:  I don't think I saw your parathormones tested.

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    • Posted

      Hi wowo thanks for the interesting message, you have been through it and still are so!!  i hope things work out for you in all of this, it can be so hard sometimes...

      I had never heard of your condtion before so thank you for telling me about it...

      i do believe that theres more to all of this...and i learnt a long time ago that it is down to us to get the answers and to to get on the road to health, i just feel like i bang my head on the wall with my doctors!! 

      I have thought about seeing a blood specialist to see what there opinion is on all of this to, so thank you for the suggestion because i think this is another avenue to try in hope i get some help...

      what are parathormones?

       

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  • Posted

    this has never been tested actually!  i am in the processof going to see a new consultant now...i hope he is good and i will ask him to test this to!  thnk you
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