My Story for private endocrinologist - what Qs to ask? 🤔

[Insomania]

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?

[greygoose]

I have no suggests as to what you should ask the endo - apart from testing pituitary hormones - but I wondered if you knew that having large babies like yours is a hypo symptom? Might come in useful to know that.

[Insomania in reply to greygoose]

Yes, I did read that! I’m 5ft 1in tall, size 8/10, my labours did not progress well! 🤦‍♀️

Plus I had a car accident whiplash injury in 2012 too. I’ll add that in.

[Aurealis]

What would you like endo to do? Why are you going to see endo?

I think if you answer these questions you will have your questions…

[Insomania in reply to Aurealis]

I’m going to see the Dr because my cluster of symptoms fits thyroid or HPT issues .

I’m treating perimenopause and anaemia and feel no better. Worse over time. Fatigue exhaustion and brain fog make my days so hard.

I’m retesting with medicheck next week to see if there’s any changes to the blood results from my vitamins and minerals being treated.

Like everyone, I want to feel better.

[greygoose in reply to Insomania]

Ahhhhhhh right! So, your pituitary was probably damaged causing secondary hypo. Have you told the endo that?

[arTistapple]

You have done a sterling job laying all this out for your endo and for yourself! However I find doctors have the lowest possible attention span. They should not but they do. Even if they could accept the fact that patients are not idiots and provide all this information for a reason, they would do better. If I were you I would now, for the appointment, hone in on say two issues that are really bothering you and be ready to prioritise those - further preparation. Be careful about insomnia or anything that makes you sound depressed. They are both pounced on and become ‘vias’, meaning they will likely go off at a tangent and you might not get what you really need from this consultation. However there are no guarantees because ‘vias’ seem to be their ‘go to’ to ‘get you’ out of their consultation rooms. It’s a minefield many of us are unfortunately familiar with. You have already done sterling work. Best of luck, you might get a proper listener. That would be wonderful!

[Regenallotment Ambassador]

Hi, good luck with your appointment, I hope it goes well.

My advice would be to know what you want from it in advance. E.g adrenal testing or a trial of T4 …

I’ve just been reading Dr Barry Durrant l- Peatfield’s book ( Your Thyroid and how to keep it healthy) and he describes your symptoms/situation and refers to tertiary and receptor uptake failure that could present like you.

Let us know how the appointment goes 🌱