Asking for guidance - 1st appointment with endocrinologist

[Praga]

Hi. I am new here and I will have my first appointment with an endocrinologist because I suspect I might have hypothyroidism and I would like to have some guidance regarding the test that should be done and general advice.

I am a 33-year-old woman. I weigh 60 kilos (22,7 BMI), non-smoker, non-drinker. I have a pretty healthy lifestyle.

My symptoms started almost 3 years ago. I have mistaken symptoms these years as something caused by stressful episodes in my life (a break-up, two international moves, exams, etc)

In March 2021 the situation became unsustainable. In these last months, I would be able to count the "good" days that I have had with one hand. There are days where I can't even do the bare minimum because I don't have energy.

Long short story. I went to Urgent Care because after tonsillitis I was feeling awful after a month. The doctor mentioned if I was tested for hypothyroidism and it was like “Eureka!”

I started to read about hypothyroidism and I could find some answers to all my health issues. I will list my symptoms later.

I got a referral to a GP. The practitioner nurse wasn't helpful at all and she never listened to me. She said I should see a psychologist and she diagnosed me with “winter depression” because I moved from sunny Spain to the Midwestern United States. (BTW my professional field is Psychology and I do not have depression)

I had to insist on having a referral to an endocrinologist. I will have the appointment in mid-July. I had some blood tests done and my T4 free was kind of low. I will attach my blood test results as a scan too, unluckily they don´t have reference values.

1. BLOOD TEST

I will list the values that weren´t in the range.

AST SerPI QN = 11 Units/L LOW

Bilirubin Total SerPO QN = 1.5 mg/dL HIGH

Total Protein SerPI QN = 6.7 GM/dL (Range Limit)

Hemoglobin A1C HPLC BLD QN = 5.5% (Range Limit)

Est Average Glucose mg/dL = 111 mg/dL

Estimated GFR (CKD-EPI) = >90 ml/min/1.73m2 (Range Limit)

TSH 3erd Gen SerPI QN = 2.188 mcU/mL

T3 Free SerPi QN =3.22 pg/ML (Limit)

T4 Free Direct SerPI QN = 0.80 ng/dL (Limit)

Vitamin B12 = 140 pg/mL LOW

Vitamin D Total = 20.5 ng/mL LOW

2. FAMILY HISTORY

My grandmother (my mother´s mom) had hypothyroidism, diabetes and she was obese.

My aunt (my mother´s sister) has hypothyroidism. She is taking Levothyroxine 75 mcg daily since she was 39 years old.

My mother never got tested.

3. SYMPTOMS

My symptoms are:

*Energy Level and Sleep

Extreme fatigue - in the last 3 years

tiredness

Difficulty to focus

Brain fog

Inability to concentrate

Insomnia

Difficult to fall asleep (I use melatonin)

Waking up feeling tired

Nightmares, vivid, violent (4-5 nights per week)

*Menstrual Disorders

Heavier and/or more frequent menstrual periods, worse cramps, worse premenstrual symptoms

Heavy periods (with clots)

Irregular periods

Painful periods

Extreme bloating and water retention

Decreased libido

*Digestion

Persistent thirst

+100 LDL - Bad cholesterol while having a healthy diet (no sugar, no processed food, no fried food, low carb)

Anemia (not at the present moment, but recurrent Anemia for years in the past.

Loss of appetite

Food sensitivity

Alcohol intolerance

Irritable Bowel Syndrome (IBS)

Lactose intolerance

Gluten sensitivity/intolerance

Abdominal distention

Weight gain in the abdominal area

Excess gas

Flatulence

Nausea

Excessive belching

Note: Now I am following a gluten-free, diary-free, sugar-free diet. I have noticed less pain in the abdominal area in the last week.

*Weight:

Diminished appetite

Belly fat

'Heart:

Low blood pressure (below 90/60)

Poor circulation - Low heart rate. At night: 47-50 bpm

*Body Temperature:

Cold extremities

Cold intolerance

Internal shivering

Cold hands

Clammy palms

Cold feet

Little perspiration

Low basal body temperature (below 35.9 Celsius degrees)

*Infections:

Frequent infections

Recurrent throat infections

Repeated urinary tract infections

Hard time recovering from infections

*Skin:

Dry skin

Cracked heels

Easy bruising

Acne

Breakout on chest

Puffy-looking face

Ears:

Oversensitive hearing

Eyes:

Dark rings under eyes

Hair:

Finer hair

Bristle hair

Dry hair

Facial hair in women

Nails:

Brittle nails

Numbness and Tingling:

Legs, feet and hands

tingling sensation in the hand, fingers and feet

Emotional:

Tension

Irritability

Wanting to be solitary

Mood swings

Anxiety

Jumpy

Easily startled

Lack of confidence

Nervousness

Mouth and throat:

Difficulty swallowing

Salt cravings

Sweet cravings

Bleeding gums

Receding gums

Kidney and Bladder:

Frequent need to urinate

I would appreciate your advice and suggestions.

Thanks in advance,

Praga.

[Praga]

Blood Test. Page 2. Vitamin D and B12 - Low

Blood test. Page 2

[Buddy195 Administrator in reply to Praga]

Hi Praga,

I would contact your blood test provider & ask for reference ranges, as lab tests differ. This will allow members to offer better advice.

I’m glad you are trialling Gluten Free; this really helped reduce many of my previous digestion issues. Take a good probiotic too or make some water kefir (a recent post by another member got me making this & it’s great!)

My gum/ tooth issues resolved when B vitamins were optimal. I take Thorne Basic B daily.

I take magnesium glycinate early evening; it helps me sleep & is easy on the stomach.

Anxiety was my first symptom of a thyroid condition & the one that was misdiagnosed as ‘health anxiety’. I knew I wasn’t depressed & didnt take the anxiety medication offered by GP...... optimal thyroid medication & key vitamins in range were key to improving my anxiety. If I feel heightened anxiety for more than a few days I recheck my thyroid bloods/ key vitamins as I likely need an adjustment.

Best wishes to you!

[Praga in reply to Buddy195]

Hi Buddy195. Thanks for your advice.

- I was reading about probiotics and I will look for that post you mentioned - I bought Magnesium supplements but I didn´t start to have them yet. I wasn´t sure if I should take supplements before the blood tests.

Now I have the reference range of the blood test:

AST SerPI QN = 11 Units/L LOW (Reference Range 13-39)

Bilirubin Total SerPO QN = 1.5 mg/dL HIGH (0.00 - 1.00)

Total Protein SerPI QN = 6.7 GM/dL (6.4 - 8.00)

Hemoglobin A1C HPLC BLD QN = 5.5% (4.0 - 5.6)

Est Average Glucose mg/dL = 111 mg/dL

Estimated GFR (CKD-EPI) = >90 ml/min/1.73m2 (Range Limit)

TSH 3erd Gen SerPI QN = 2.188 mcU/mL (0.400 - 4.200 )

T3 Free SerPi QN =3.22 pg/ML ( 1.5 - 3.5)

T4 Free Direct SerPI QN = 0.80 ng/dL (0.6 - 1.5)

Vitamin B12 = 140 pg/mL LOW (200 - 1000)

Vitamin D Total = 20.5 ng/mL LOW (30 - 100)

[Praga in reply to Praga]

Hemogram- Platelets - WBC Differential with reference range

Hemogram- Platelets - WBC Differential

[SlowDragon Administrator]

Welcome to the forum

We always need the ranges on test results ....apart from Vitamin D with is standard range

Obviously vitamin D needs improving to at least 30ng/ml and better around 40ng/ml (or 100nmol in U.K. units)

What’s the range on B12

You will need testing for pernicious anaemia before starting on B12 injections or daily B12 supplements

You also need folate and ferritin tested

Thyroid.

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water

You need thyroid antibodies tested.

Autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies and/or by ultrasound

[Praga in reply to SlowDragon]

Hi Slow Dragon! Thanks for the welcome

1. The B12 range is 200 - 1000. And my result was 140 pg/mL.

2. On 5th May the doctor in Urgent Care prescribed me:

- Vitamin B12 1000 mCg oral tablets (cyanocobalamin - 1 tablet per day - for 30 days)

- Vitamin D2 (ergocalciferol 50,000 intl units (1.25 mg) oral capsule - every week - for 8 weeks

- Omeprazole (Prilosec 20 mg oral delayed released capsule) 1 cap per day - I am not taking this because I don´t feel is related to my health condition.

He didn´t order any additional blood test. I wasn´t tested for pernicious anaemia, or folate and ferritin. I feel the forum is more useful than a medical appointment.

What should I do regarding the test for pernicious anaemia when I have taken Vit B12?

3. My thyroids exams were done at 10 am. I will take your advice for the next time

4. I was tested for TPO ab QN and the results were: 0.6 IU/mL (0.00 - 9.00)

My other thyroids results were:

TSH 3erd Gen SerPI QN = 2.188 mcU/mL (0.400 - 4.200 )

T3 Free SerPi QN =3.22 pg/ML ( 1.5 - 3.5)

T4 Free Direct SerPI QN = 0.80 ng/dL (0.6 - 1.5)

Thanks again for your help!

[SlowDragon Administrator in reply to Praga]

B12 was certainly very low

Suggest you ask advice on PAS Healthunlocked

healthunlocked.com/pasoc

Low B12 symptoms

b12deficiency.info/signs-an...

[Praga in reply to SlowDragon]

Thank you so much. This info opened a new world for me in the last weeks.

[SlowDragon Administrator in reply to Praga]

Getting iron and ferritin tested

Heavy periods are extremely common with hypothyroidism

Frequently results in anaemia

Also need folate tested

Plus thyroid antibodies for autoimmune thyroid disease (hashimoto’s)

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how thyroid hormones work

20% of Hashimoto's patients never have raised antibodies

If antibodies are negative getting ultrasound scan of thyroid recommended

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[Praga in reply to SlowDragon]

Thanks again SlowDragon.

1. I had new tests done last week. The antibodies came negative.

Anti-Thyroglobulin < 0.9 IU/mL Reference Range:0.0 IU/mL - 4.0 IU/mLThyroid Stim Immunoglob/TSI < 0.10 IU/L Reference Range:<= 0.54 IU/L

TTG IgA< 0.1 Units/mL Reference Range:0.0 Units/mL - 6.9 Units/mL

2. My THS was higher than in the previous test. This time I did early as possible as you suggested.

TSH 3rd Gen SerPl QN 3.461 mcU/mL Reference Range:0.400 mcU/mL - 4.200 mcU/mL

Note: Previously was 2.188 mcU/mL.

T4 Free Direct SerPl QN 0.7 ng/dL Reference Range:0.6 ng/dL - 1.5 ng/dL (Previously was 0.8 ng/dL)

3. My Prolactine was high. My endo wants to do a pituitary MRI. I guess to check if there is a tumor.

Prolactin SerPl QN 3rd IS 25.6 ng/mL (High) Reference Range:2.0 ng/mL - 23.0 ng/mL

4. I had a blood test for Celiac disease. It was negative. Ten years ago I was checked twice and it was negative too, but my body has very strong reactions every time I eat gluten.

Celiac Disease Interp

Celiac disease very unlikely. However, approximately 10% of patients with celiac disease are seronegative. If celiac disease is highly suspected, consider celiac disease associated HLA testing(Celiac Disease Genotyping).

My genetic results for celiac disease are

Note: the ones with ❇️are the ones present

Gene - RS ID - Risk Allele - YOU Notes about the Risk Allele:

HLA-DQ2.5 rs2187668 T ❇️ CT You need either of these HLA alleles for celiac disease to be possible

HLA-DQ8 rs7454108 C TT

rs1464510 A — These all add to the risk of celiac — but ONLY if you have one of the above HLA types.

rs842647 A ❇️ AG

rs2816316 A ❇️ AA

rs917997 T ❇️ CT

rs6441961 T ❇️ TT

So I have a genetic susceptibility.

5. I got a thyroid ultrasound.The doctor said:

"Thyroid US showed normal sized thyroid lobes both sides.

There was a very small 2 mm cyst which is non significant, doesn't even meet criteria for biopsy.

Great US. no Hashimoto's on this Ultrasound."

I have an appointment with my endo next week, and with a gastroenterologist in a month.

I feel this is only the tip of the iceberg. I am very tired of all the testing and getting no physical improvement.

My endo said to try do a trial of low dose thyroid hormone since TSH is now 3.4- slightly higher than before.

Thanks for your help!

Hormone tests

[Buddy195 Administrator]

If you don’t find the post on water kefir (it wasn’t in the title so it may be hard to find!) I found a couple of videos on YouTube and bought some organic water kefir grains on Amazon for around £6. All you need is a couple of Kilner jars and a small plastic sieve. A couple of days later I’ve got my own probiotic supply!

[scoutsuki]

Dear Praga , My family have a history both on mum and father side of hypothyroidism. I started on 75mg thyroxine then moved up to 100 mg. Ladt year I was having issues with my hormones where I began to feel fatigued and anxious. After blood tests it showed my thyroid levels were abnormal. My thyroxine meds were changed to 75mg and 100mg alternate days. I have also been on HRT for many years. I've now stopped HRT and feel reasonably stable. I don't examine my blood results in great detail. Sorry I can't offer much advice but my hypothyroidism is classed as low level and not complex.