Advice on next steps please

[Fizzyinch]

I'm feeling very tired and overwhelmed with managing my health at the moment, wondering if anyone has thoughts or advice on my results. Here's the background and about me:

I was diagnosed with a pituitary tumour (non- hormone producing) in August last year which caused some havoc with my hormones. It was surgically removed in January. I have had lots of blood tests with the endocrinology team at the hospital to test my pituitary hormones, and it was showing I was borderline Hypothyroid. I didn't look into it too much because I wasn't sure if this was because of the tumour causing problems.

In Sept, my thyroid hormones went very hypo and i was started on 25mcg of Levothyroxine. Started to gradually feel better on this, albeit good days and bad days, and am now on 75mcg since April 2022.

I had an anti-body test in May, although i haven't had a follow up appointment since this test, I assume this definitely confirms Hashimotos.

Thyroid peroxidase antibody >1,300 iu/ml (0 - 60 iu/ml)

My periods have started to come back after the tumour, but they are irregular and I am getting worried about fertility issues.

I am about 71-72kg.

I eat well (i think!) mainly a plant based diet but having read a bit more on thyroid diets I have cut out dairy and eggs for now and upped my chicken and fish intake. Gluten I have tried removing entirely but got scuppered at weddings and events recently... finding it really hard to eliminate everything at once.

I'm so tired getting out of bed, and I can barely make it through the day working full time without needing a nap. The GP organised for some tests yesterday.

I did these fasted, 8.30am, no levo since the previous morning. No biotin or other supplements as don't know how much i should take.

Results:

Thyroid: attached image.

Folate: 9.11 ug/L (>=5.38 ug/L)

B12: 370.0 ng/L (211.0 - 911.0 ng/L)

They also ran a full blood panel, CRP, creatine and electrolyes, liver function, bone profile, HBA1c. not sure if it's helpful to see these results?

I guess i am just starting out on my thyroid journey but it feels very overwhelming and i am not sure if the GP is going to want to decrease my medication because my TSH is low? I am guessing they will say all of my results are normal based off what I have read here.

I have just found out I won't have an appointment with my secondary care endocrinologist until October, so I am trying to be as proactive as I can in managing this as I can't keep feeling this rubbish!

I'm not sure really sure what my results mean. Do i need a dose increase or just focus on diet/ supplements?

Thanks in advance.

[SlowDragon Administrator]

Welcome to the forum

Suggest you get full thyroid and vitamin testing done as first step

High thyroid antibodies confirms autoimmune thyroid disease

B12 too low

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Suggest paying extra for Blue horizon test as will give a snap shot cortisol test result

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

[Fizzyinch in reply to SlowDragon]

Thanks SlowDragon. I’ll come back when I have done more tests then.