Hi all I am desperate for help. I read your posts eagerly every day with the hope of a glimmer of help.
I am a 40 year old woman with a complicated medical history which includes: Tonsils removed, gallbladder removed and extensive and vicious stage 4 endometrioses, which I have had several very complicated surgeries for on pelvis, bowel, bladder and some ovary removed. Due to this I am on Prostap 3 injections (forced menopause) and have a Mirena coil.
In 2009 I had Graves’s disease with two huge goitres in my neck and thyroid eye disease. I had a total thyroidectomy in 2009 as I was on the highest dose of Carbimazole and Beta blockers which did nothing for me at all..
After my surgery I started my journey on a MASSIVE 300mcg of Levothyroxine. I kept on this dose for approximately 4-5 years. In around 2014 I had blood work and the dose was dropped to 250mcg.
A couple of years ago my thyroxine was dropped to 200mcg and at the beginning of 2017 reduced to 150mcg.
For the past few years I feel SO SO ill. I am so exhausted all the time even after sleeping for 12 – 14 hours. I can’t be bothered to do anything including work which was always my passion.
I am fat with my weight creeping up at least 2KG a week if I don’t literary starve myself, and you can forget about eating carbs!
I have thin hair which falls out, spotty skin with boils on my chest, back and spotty upper arms.
FREEZING and blue hands and feet when everyone else is warm (It’s not Reynaud’s).
I swing between constipation and diarrhoea with lots of mucus and blood in stools
( have seen an Allergist and all normal allergy results were clear, although this is ongoing as looking into the urticaria)
Mood swings and SO angry /rageful
Really severe Pie crust / scalloped tongue
Acid in sleep..Waking up choking (wonder if this is sleep apnoea after reading your posts??)
Black circles under my eyes and very poor sleep.
I have recently also had 3 episodes of feeling like I’m going to pass out after a weird sensation behind my eyes.
My current medications are:
Levothyroxine 150 mcg
Citirize 10mg daily
Prostap 3 injection 3 monthly
Oestrdiol pessary 2x weekly
In the last year I have done my own research. I cut Gluten, dairy, soy, egg and nuts out for 8 weeks with not much improvement at all. I started taking folic acid, Vitamin D3, B complex, Multi vitamin and salmon oil.
I took myself to an integrated Dr which cost a fortune and he did the following tests:
Total Thyroxin (T4)85nmol/L (59-154)
TSH *0.17mIU/L (0.024 – 4.2)
Free Thyroxine 20.76pmol/L (12.0 – 22.0)
Free T3 4.4pmol/L (3.1 – 6.8)
25 OH Vit D75nmol/L (50 – 200)
Thyroglobulin Antibodies 36.5IU/mL (0 – 115)
Thyroid Peroxidase Antibodies *50.7 IU/mL (0- 34)
Reverse T3 *26 ng/dL(10 – 24)
ALT 42*Iu/L ( 1 – 31)
Uric Acid 89*umol/L( 140 – 360 )
AST 27 lu/L (1- 32)
Vit B 12 *712 Pg/ml (197 – 771)
Folate serum >20 ug/L ( >2.9 )
Ferritin 138ug/( L13 – 150)
I had a Thyroid hormone urine collection over 24 hours with total urine collected (1,900 volume)
T3 – Triiodothyronine (RIA) 105nmol/24h ( 0.61 – 3.38 )
T4 – Thyroxine (RIA) 2.79nmol/24h (1.03 – 8.24)
Adrenal stress profile:
Cortisol saliva taken upon wakening and throughout day :
Sample 1: 6.32 (2.68 – 930)
Sample 2: 2.18 (0.75 – 2.93)
Sample 3: 1.27 (0.36 – 1.88)
Sample 4: 0.14 (<= 0.94)
DHEA sample: 0.72 nmol/L (0.25 – 2.22)
The conclusion from him was that although my ranges were fairly ‘normal’ they were on the low end of normal and that I would benefit from a therapeutic trial of T3. He suggested that I go and see an endocrinologist for this.
I have now seen and Endocrinologist only to be told that the Endo doesn’t believe in Reverse T3 or any of the other tests I have spent a fortune having done! He has advised me to drop my thyroxine to 150mcg one day and 125mcg the next day alternately so that my TSH goes down.
He has also recommended more oestrogen as he thinks I’m deficient .
My thinking is that if I am over replaced with Thyroxine, why am I getting SO fat every day and why am I so tired??
He says my malabsorbtion screen is negative and I am absorbing T4 and am not coeliac.
I really feel my body isn’t converting T4 to T3 adequately. I feel so dreadful and really feel T3 would benefit me and solve 90% of my problems.
Please please can anybody hep with deciphering test results??
What should I do next? What should I ask the Endocrinologist?
Thanks so much for taking the time to read. I am so grateful to you all the advice you give us all xx