Updated diagnosis of autoimmune thyroid disorder

[Fizzwhizz]

Just an update. Unsurprisingly with elevated thyroid antibodies I have been diagnosed with an autoimmune thyroid disorder. As I currently have some hyper symptoms as well as hypo ones, the private GO who’s diagnosed me very sensibly, imo, wants to test again to ensure she gets the diagnosis and treatment plan correct. A close relative was put on thyroid meds and then her thyroid went bonkers so ended up with part of her thyroid being removed. The NHS appointment wasn’t helpful at all. The consultant wasn’t rude but couldn’t reconcile my symptoms with my TSH being in range and said I’m at risk of developing a thyroid disorder in the future. I pointed out my current symptoms weren’t in the future and her response was the suggestion of further tests and x rays as she’s convinced my weight loss can’t be related to my thyroid condition. 🤔

[Wanderingweasle]

what are your results like? Can you share all of your results with ranges?

[Fizzwhizz in reply to Wanderingweasle]

I only have these antibodies currently hence needing more testing to rule Graves on or out.

My TSH, 4, 3 etc have always been within the normal NHS range hence them dismissing my symptoms as being thyroid for years. The NHS still can’t reconcile my symptoms and numbers so hence me seeking private support.

TA 651 ref 0-115

TPA 146 ref 0-34

[greygoose]

The problem is, doctors have no idea about the symptoms. Nor do they understand the significance of antibodies, and how levels can swing around with Hashi's, and how the TSH moves more slowly than the thyroid hormone levels. It's all a huge great mystery to them. So, they tend to treat patients with Hashi's as freaks. Your weight-loss is a perfectly reasonable symptom. Not all hypos put on weight. Some lose it, some stay as they are. Or, it could be that you're just coming out of a false-'hyper' swing, during which you lost weight. But, they just have no idea how that happens. But it's all perfectly logical if you know about these things.

[FallingInReverse]

Have you told us which ab test(s) you and done?

As greygoose said - what’s happening to you is all very understandable but it isn't rare for doctors to have no idea and get really confused. Never ceases to amaze me, but it’s true.

Please let us know specifically which if these were done (now or ever):

1) TRab

2) TSI

3) TPOab

4) TGab

[Fizzwhizz in reply to FallingInReverse]

TA 651 ref 0-115

TPA 146 ref 0-34

The private GP wants to check I definitely am still hypo before treatment so wants to test T rab and T Gab and antibodies again just to be 100% sure prior to agreeing appropriate treatment plan. The NHS consultant endo flatly refused to test for these when I asked if I possibly had Graves as it wasn’t supported by my TSH levels. She says the weight loss can’t be related to my thyroid.

[SlowDragon Administrator in reply to Fizzwhizz]

She says the weight loss can’t be related to my thyroid.

She’s probably a diabetes specialist

Many Hashimoto’s patients loose weight initially, as thyroid breaks down and releases excess thyroid hormones

A minority of hashimoto’s patients struggle to maintain weight unless thyroid levels are optimal…..due to loss of appetite and/or poor gut function and poor nutrient absorption

Others also develop coeliac or gluten intolerance

Both can result in weight loss, especially coeliac

Have you had coeliac blood test yet

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

[FallingInReverse in reply to Fizzwhizz]

Just to clarify, per previous post, these are the antibody tests you’ve had, confirm autoimmune but yes, could be either Hashimotos (hypo) or Graves.

Thyroglobulin Antibodies TGab 651

Thyroid Peroxidase Antibodies TPOab 146

These are the two to confirm Graves (hyper)

TSH receptor antibodies TRab

Thyroid-Stimulating Immunoglobulin TSI

Just make sure you get what you need as your post above says you will test TGab again, but you don’t need to.

[Wanderingweasle in reply to Fizzwhizz]

Doctors are doing a disservice to their patients by not focusing on the autoimmune aspects of the disease and not listening to the patient or trying to understand the symptoms.

My case is similar to yours, I had tsh at around 0.5 with midrange ft3 and upper mid range ft4 and normal vitamin, electrolyte and iron panel.

How I found about about my hyperthyroidism and graves disease was reading through this forum and some Facebook groups and then advocating for my own health.

It turned out I had positive TRAB (TSH Receptor Antibodies) in two consecutive tests, I had a heterogeneous thyroid which reinforced the issue, and to top it off my uptake scan also confirmed graves disease/hyperthyroidism. Most of the endos were clueless and some fired me saying that I'm making symptoms up. I have muscle loss, muscle wasting, muscle weakness, bounding pulse, palpitations, tachycardia, tremors, muscle twitching, weight loss, gut issues, nervousness, dry eyes, blurred vision ans double vision and more. The doctors could care less and delayed diagnosis as much as possible. Eventually found one who understood the thyroid a bit better and he agreed to trial very low dose mm and beta blocker. I'm still not well but at least heart symptoms were fixed and after I moved out, I don't have an endocrinologist yet in new area, but I know more or less now that it's mostly a graves issue and everyone has his own different journey and experience with graves.

I hope you'll be able to find some solution to your problem quick and not get dragged for years with this diagnostic journey, I qas pushed from one specialist to another and eventually all pointed towards thyroid problems including cardiologists, neurologists and gastroenterologists.

[Fizzwhizz in reply to Wanderingweasle]

I’m so sorry to read your story. I have a long list of symptoms too which have been ramping up over the last decade and affecting my quality of life badly. I just wasn’t functioning but I assumed it was menopause and have spent 5 years chasing treatment with a private doctor for that with no resolution to symptoms. Turns out I probably can’t tolerate HRT in my current state. Meanwhile I’ve been gradually getting diagnosed for other problems with nobody joining the dots. Ditto without this site I’d still have no idea and would have been at the mercy of the endocrinologist yesterday who was trying to help but didn’t have the capacity because I didn’t tick the right boxes.

[Fizzwhizz]

Thanks. I probably got the wrong test labels. The weight loss is new to me and prior to now I was sure I had Hashis. Under the circumstances makes sense to either rule Graves before approving any treatment. I asked about gut health, vits etc and she said for now the supplements were helping and to treat the thyroid condition first and then see what residual symptoms there are.