This is everything I have sent to the private endocrinologist about the last two years, with supporting evidence….
Dear Private Endocrinologist,
I believe I have symptoms of hypothyroid or central hypothyroid or an issue with HPT axis however my blood tests are within the NHS ranges. In the two years since a multinodular goitre was identified I have been unable to be referred to nhs endocrinology.
I am being given more and more medication to treat individual symptoms rather than a holistic approach taking into account my debilitating symptoms rather than only considering my blood tests.
I am 48 years old, I am a full time carer to three autistic children, life is pretty stressful and I’m doing everything I can to help myself with some carer respite and psychotherapy.
At an appt in January the GP said he is confident that my symptoms are due to carers burnout and nothing to do with thyroid, he said I need to let it go and move on and offered me anti-depressants again which I declined because I do not have depression. (GP letter. )
Relevant background
-1st Birth 2011, traumatic EMCS and 1litre blood loss, blood transfusion, 8lb 10oz baby
-2nd birth 2013, low iron in pregnancy, 9lb baby
-In a GP appt in 2016 I mentioned possible perimenopause symptoms, hot feet in bed, GP thought not.
-3rd pregnancy in 2017, age 42. Very low iron. Midwife commented on my bulging neck but did not inform me that it could be enlarged thyroid, it's possible this is when goitre began. Baby was 9lb 1oz. No follow up on iron levels postpartum.
-Saw GP again in 2019 struggling to get back to sleep for 2h if baby woke me, feeling low and fatigued. GP did hormonal tests.
-Didn't see a HCP through pandemic until May 2021 when I had a minor car accident, physiotherapist spotted enlarged thyroid
-2ww to get thyroid assessed, multinodular goitre. Discharged, no follow up. (letter)
-I had a private iron infusion in December 2021 because I felt so poorly and GP had only just referred me to haemotology.
Treatments
-Iron deficiency anaemia is now well treated, under nhs haemotology since February 2022 (letter) long term for regular iron infusions when ferritin gets low (last one Sept 2022), I can only tolerate 10mg iron with vitC daily due to gastro issues.
-On HRT patches for perimenopause, no improvement of symptoms.
-On low dose 20mg amitriptyline for chronic insomnia, this works well but can feel lethargic and zoned out in the morning and has had no effect on fatigue.
-For heavy periods I take tranexamic acid
-Unexplained digestive issues investigated (letter). Daily low dose laxative recommended by gastroenterology Dr.
-Since new year I’m taking high daily vits & minerals: B complex, C, D, K, magnesium complex. I had to research this myself.
Signs
-Longterm unexplained low iron
-Heavy periods, shorter cycles, periods longer in length
-unexplained gastro issues
-low vitD
-low vitB12
-multi-modular goitre, awaiting an ultrasound checkup
-low cortisol by saliva test, low DHEA (results)
Symptoms
chronic insomnia
Racing thoughts and anxiety at night time
daily fatigue
brain fog
memory issues, forgetfulness
no motivation, lack of confidence
Poor concentration
light sensitivity, dry eyes
Constipation, diarrhoea, sometimes on same day
low libido
poor hearing
weight gain around middle
Muscle weakness, muscles look less defined
Muscles ache from minor effort, e.g. walking upstairs
Neck ache, back ache
Throat throbs at night
cold body, cold extremities
cold sores, sore mouth
hands tremble, feel lightheaded
heavy periods
breast pain with progesterone increase in 2nd half of cycle
Haemorrhoids internal
Hiatus hernia (no symptoms)
Generally feel unwell and not myself
Blood results
15th December 2022
TSH 0.32 mIU/L (0.35 - 5.5) -0.6%
Free T4 (fT4) 15.3 pmol/L (10.5 - 21) 45.7%
4th January 2023, TSH retested with T4, T3, vits and minerals
TSH 0.59 mIU/L (0.35 - 5.5) 4.7%
Free T4 (fT4) 14.4 pmol/L (10.5 - 21) 37.1%
Free T3 (fT3) 5.0 pmol/L (3.5 - 6.5) 50.0%
Thyroid Peroxidase Antibodies (TPO) <28 IU/mL (≤ 60)
Thyroid stimulating immunoglobulins (TSI) <0.10 IU/L (<0.56)
Vitamin B12 386 nmol/L (211 - 911) 25.0%
Vitamin D3 66 nmol/L (30 - 500) 7.7%
Folate 16.93 (>4.12)
serum iron 14 umol/L (9 - 30.4) 23.4%
Ferritin 176.6 ug/L (10-291) 59.3%
My blood test results may possibly look different when I retest everything for the appointment because I’ve been treating my essential vits and minerals daily since the new year.
My cortisol is low in 3 of the 4 points in the day by saliva test and DHEA is very low (attached), I sent these results to GP and then had a cortisol blood test at 8am on a random day of my cycle while on HRT. It was normal range.
I have quarterly iron panel and my ferritin is now maintaining well which I believe is due to the infusions, heavy periods being treated and daily 10mg iron.
29 March 2023
C-Reactive Protein (CRP) 4 mg/L (0 - 9) 44.4%
Serum iron 19.1 ug/L (9 - 30.4) 47.2%
Ferritin 183 ug/L (10 - 291) 61.6%
signed off email
Thank you for all the help getting this far, I hoping to get an appt in 5-6 weeks 😫
What questions should I be asking?