disregarded for years / misdiagnosed/disillusioned

[NINA2024]

My Mothers side of family are inundated with thyroid issues, on meds. For 8 years I’ve been trying to get someone to listen to ky symptoms all presenting subacute thyroiditis, now chronic thyroiditis, several bodies, ultrasound showing small thyroid. Was habitually dismissed even though being an extremely active person, go-getter, life-time healthy eater and exercise, life stopped.

Blood appear in low-normal range to normal range. Symptoms are getting worse, however, endocrinologist simply don’t care in my opinion.

Symptoms:

4-6kgs weight gain in 2 months no change in diet or exercise.

• Severe brain fog – I feel mentally 'clouded' and disconnected, like there's a fog over my eyes and mind

• Sudden body jerks and twitching – especially when sitting or lying down

• Chronic trembling

• Extremely sore thighs and deep muscle pain

• Extreme fatigue and body weakness – difficult to stand or function during crashes

• Numb hands

• Dizziness and imbalance – feeling like I’m tipping or falling

• Left chest pain

• Loss of outer eyebrows on both sides

• Eyes feel sore and sting

• Uncontrollable crying and emotional swings – without emotional cause

• Sudden anxiety and fear – not like me at all

• Nausea

• Difficulty swallowing

• Disturbed sleep,

• Sudden weight gain of 4-6kgs no change in diet, or exercise, walking the dog and nightly exercise.

• Can’t do any work or house work over an hour without having to rest. Not like me at all.

• These crashes come in cycles, often after a period of doing well.

I have a history (or family history) of thyroid dysfunction and suspect a chronic thyroid or autoimmune issue.

My symptoms are being dismissed as “normal” because my bloods fall within the lower-normal ranges, but I am not well

Night hours extremely difficult, akin to being tortured. Quite difficult to explain.

[Jazzw]

It certainly sounds like it could be a thyroid issue. What are your actual blood test results? If you’re happy to share them, we might be able to comment.

But also, other conditions can mimic thyroid problems - or be present as a result of having an under active thyroid because lack of thyroid hormone can lead to poor gut absorption which in turn leads to low B12, low folate, low iron and low Vit D levels.

Low B12/folate symptoms in particular can be very similar to hypothyroid symptoms (take a look at the list of symptoms for “pernicious anaemia”). Have you had further blood tests to determine levels of these other vitamins and minerals?

[Buddy195 Administrator]

Welcome to the forum NINA2024,

So we can offer better advice, can you share blood test results (with ranges in brackets) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12).

With your family history of thyroid issues, it’s likely that you may have an auto immune thyroid condition (aka Hashimotos). The antibody tests would confirm this.

In the first instance, do ask your GP for the above tests. We don’t recommend supplementing key vitamins without testing first (and sharing results with us).

Please be aware that when GPs say normal/ within range, this may not be the same as ‘optimal’, where you feel most well.

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...