Am I ever going to get a full picture 🤦🏼‍♀️

[Buckley123]

Hello you lot ❤️

So I had thyroid suggested to me I couldn’t of course get my GP to do anything about it by the NHS so I pay privately through midi checks to have a blood test to check my full thyroid and antibodies function was okay but antibodies are high so I think that puts me in the category for under-active thyroid but that doesn’t explain the brain lesions Unless it’s something called HE not too sure rest of my results are okay

Sorry to ask here I don’t seem to get much of a answer on thyroid xxx

[KayHimm]

What thyroid antibodies were positive?

[Buckley123 in reply to KayHimm]

Thyroid peroxidase antibodies where 39.7 and are meant to be 34 xx

[KayHimm in reply to Buckley123]

I think you should take the results to Dr d Cruz. He will put the results into perspective. He might want your thyroid function to be tested on a regular basis.

Kx

[Buckley123 in reply to KayHimm]

I think tho possible it’s safe to say it’s autoimmune based what ever this turns out to be I hurt all over mainly hands and legs worse at night 🤦🏼‍♀️🤦🏼‍♀️ how are you ?? Xxx

[KayHimm in reply to Buckley123]

Jade, it is hard to say how he will interpret the test results because they do not usually run thyroid antibody tests unless thyroid function is low or high. My doctors did see my thyroiditis as pointing to autoimmune tendencies when I was your age.

Also tell Dr d Cruz about the pain. Is it in the muscles? Joints? Does it hurt when you do certain things? I really feel for you. You are not feeling well at all.

I am doing fine. Thanks. Good phase.

Xk

[Buckley123 in reply to KayHimm]

I think it’s muscles could be joints worse when resting dull ache that won’t go away

After rest it 8/10 goes away until you it comes back 😂🤦🏼‍♀️

I know they don’t normally run the test but I kept mixing my words and the pcos and the constant lump in my throat I thought let’s just see and it came back raised.

Which I don’t have a lot of raised results feel like I’m clutching at straws all the time to prove I’m ill.

Do you have thyroid issues ?

Might help towards uctd ?

Hashimoto’s I think they call it maybe ?

Xx

[KayHimm in reply to Buckley123]

Hard to say. Definitely bring it up to Dr d Cruz. Way out of my league. Dr d Cruz will examine your thyroid to see if that is enlarged. He sees lots of patients with thyroid disease, I am sure.

Yes, I have thyroid nodules and function has gone high and low at times. Mother had Graves. They have tested thyroid antibodies many times. You might have to be followed closely for changes.

Xk

[Buckley123 in reply to KayHimm]

Why break a habit of a life time ay xx

[Hayleyrose28]

Hi

I’m not entirely sure if this helps, but I’ve had hypothyroid for pretty much all my life (officially diagnosed aged 11) but it can cause a lot of fatigue, aches and pains, alongside other debilitating symptoms, if you’re left untreated and your levels are out.

I see David D’Cruz last week and I’m sure he said that having under-active thyroid is quite commonly connected with other autoimmune conditions (at least I think that’s what he said, it’s been a long week lol 🙄). He’s also rechecked my thyroid levels as standard for new patients at the London Lupus Centre. Though, I’m under an endocrinologist for my thyroid, so you may be better under an endocrinologist?

Anyway hope these results help to give you some answers x

[Buckley123 in reply to Hayleyrose28]

Thanks Hayleyrose for your kind reply it’s only my antibodies that are raised not my t3 or t4 or tsh all normal so unlikely to get treatment apparently.

But I’m hoping it will point dr d Cruz back to autoimmune as I have a feeling the last doctor I see under dr d Cruz tried to say I was fine no sign of autoimmune at all x

Starting to think I will never know the only other test I had that was positive with high ace which I was then told was Irrelevant and also obviously my brain scans which showed lesions seem to be hitting a dead-end at the minute you get one doctor says one thing and you get somebody else to completely and does it it’s so disheartening especially when you don’t feel well and then you get told that it’s all in your head psychosomatic not surprised some of it must be sarcasm mate because of all the stress and strain that they put me under xxx

[Hayleyrose28 in reply to Buckley123]

I’m sure that Professor D’Cruz will do his best to help, as these results must count for something. You’re obviously suffering, so I hope you get the help and support you need.

If it’s any consolation, I can really sympathise with the “it’s all in your head” rubbish from certain so-called medical professionals. When I began to feel incredibly unwell nearly 3 years ago when I was 20, I had certain doctors saying there’s nothing wrong with me, and to go and live my life. (Also had the ‘functional’ label which grated me 😬). But now, I’ve got a list of chronic conditions as long as my arm, and as much as I wished I didn’t have them, I’m glad that someone could prove that I wasn’t imagining it. Also I’m lucky that there were some doctors/consultants that were willing to look outside the box. The trouble is, I’m not a textbook case (and it seems you’re not either) so some doctors write you off from the outset if you don’t follow a typical pattern. From what I can gather, Professor D’Cruz is really compassionate and will do his utmost to help.

I guess what I’m trying to say is, please don’t lose hope, you know more than anyone that your symptoms are real and you’re suffering. Xx

[Buckley123 in reply to Hayleyrose28]

Thanks so much your right dr Cruz is one of the good guys I’m just tired is all xxx

[Salzer]

Hiya. I've had high TPO antibodies for a few years now too (think around 160ish) but not hypothyroid according to my GP. Have to get it checked every year but none of the doctors I've seen seemed to think it is significant. But I can't help but think it is relevant as it's showing autoimmune activity isn't it??

Think I've also read that our range for normal thyroid function is really different to other countries, it's much wider and lots of people can be affected at our 'normal' levels. I looked into all this a few years back when I was feeling awful and not getting any answers too and I thought it might be thyroid. Sorry you're feeling so rubbish and getting nowhere. It's so frustrating, I know only too well🙁

X

[Buckley123 in reply to Salzer]

Thank if your kind reply I really appreciate your help I am I not mines not that high at all but is over their normal I think it was 39.734 so no one knows how are you but I was hoping it would indicate some kind of water main activity going on like you say maybe give a reason to why I feel so rough but then also found it apparently I wouldn’t get any medication for level with Matty for an T3 and TS Hache are all fine so maybe back to the drawing board but I will bring it to Dr the Curze’s attention and I see my neurologist todayHopefully he can shed some light on itI don’t understand why they have levels if it means it’s irrelevant it doesn’t make any sense I was told this about my Ace levels I was told this was a relevant as well xx

[Salzer in reply to Buckley123]

I agree. Drives my crazy when you get a result back and then they dismiss it as nothing. Would understand if you are healthy and well but if you're sitting there in bits in front of them then you need them to at least consider it!! But definitely mention it to him. It must show something is going on. It was the first thing that showed positive in my blood tests. About 18 months later the ANA shot up. Best of luck today ☘x

[Buckley123 in reply to Salzer]

Thanks 🙏

It’s crazy having to prove your ill isn’t it xx

[MEGS53]

Hi Jade. You seem very stressed just now and the indecision of your Drs isn't helping, is it? Have you got an appt to see Prof d'Cruz or is it only to see the neurologist? I hope todays meeting will be able to put your mind at rest about the relevance of the TPO antibodies re possible treatment for thyroid issues. Please let us know how you get on. Thinking of you. xxx

[Buckley123 in reply to MEGS53]

Thanks megs

Yeah it’s just seems that everything is irrelevant when I ask it’s so annoying if it’s irrelevant I’d like them to leave the blood in my arm no need for the test 😂

Not seeing Cruz until the end of January 🤦🏼‍♀️ so just neuro today although he is good

How are you xx

[KayHimm in reply to Buckley123]

You might want to get the neurologist’s view of whether he thinks your neurological symptoms are autoimmune related, particularly since many of your symptoms are neurological and you have the abnormal MRI. He may have discussed your case with Dr d Cruz and view you similarity.

Wishing you a good appointment.

Kx

[Buckley123 in reply to KayHimm]

He dose he thinks it’s uctd same as dr d Cruz it’s only dr sanna who said no but that was the last appointment I had xxx

[MEGS53 in reply to Buckley123]

Please let us know how you get on at your neuro appt. xxxx