Still non the wiser

[Buckley123]

So basically see my neurologist and he still thinks I have UCTD and that the antibodies are racist he’s a salon that my immune system isn’t working properly if it was five or eight then my teeth through and T4 would be also affected he told me that this is not just a brain disease PCs going through my whole body they are waiting to see what happens to keep the hydroxychloroquine and monitor my condition with yearly brain scansHe did mention that I could possibly have sarcoidosis but said my brain presentation did not look like sarcoidosis again confused when I asked for a diagnosis he said I would want to keep at UCTD and would not want me to evolve into anything else so he’s going to treat me and make me feel better by just using the hydroxychloroquine

I asked about the pains in my hands and legs and said this was down to the condition the condition that has a no name 🤣 I guess what they’re trying to say is they know something autoimmune is going on but hasn’t yet and I hope that it doesn’t and he just stays at bay so maybe I should just accept that and try and move on hopefully I’ll start to feel better I’ve had my ice levels we taking to see with the hydroxychloroquine is helping

Xxx

[Lisalou19]

Hey chick,

Well this sounds pretty good. Remember it takes years to get a diagnosis and you are in the early stages so this would make sense with you.

I think you need to accept UCTd as it is it’s own diagnosis.

The fact your brain and everything else shows no real disease is brilliant . Xx

[Buckley123 in reply to Lisalou19]

Hey hun

Yeah he said the thyroid antibodies indicated something is miss firing and my brain is stable a year apart

He’s hoping to stay uctd

And it doesn’t evolve into something more.

I told him what dr sana said he said take no notice I’ve seen a letter he’s trying to push for fibromyalgia which I won’t let happen

He also said my main goal is to protect your brain from anymore damage so I will have regular brain scans.

He said I will start to feel better and if it evolves and shows its self then they can do more.

He said this isn’t just in your brain it’s everywhere my leg pain is all linked.

I hope when I see dr Cruz he matches this xx

[KayHimm in reply to Buckley123]

Your neurologist sounds very smart. His approach is similar to my own neurologist’s. The only way they can evaluate your brain is through the MRI, assessing organ damaging. But the important thing is he sees you are doing well and his thinking aligns with Dr d Cruz.

Xk

[Buckley123 in reply to KayHimm]

This is true thanks kayhimm how are you doing xx

[Salzer in reply to Buckley123]

So glad you had a good appointment. He sounds great and you were right that the thyroid antibodies do mean that something is misfiring! And great that he's keeping you on the hydroxy to help and going to review from there. Try not to worry about the January appointment for now, put the other doctor and fibro out of your mind and just focus on your neurologist's plan as it sounds like a very good one. Xx

[Buckley123 in reply to Salzer]

Thanks sazler how are you?? Xxx

[MEGS53]

Hi. It's good news that your neuro has confirmed a dx of UCTD (you know what I mean!!). So, please try to take it all in - ignore Dr S - and try to de-stress a little. You have a valid dx and your brain's doing just fine...…..and relax. xxx

[Buckley123 in reply to MEGS53]

Thanks well Ny partner asked for official diagnosis so I can move on and he laughed and said I will not get one of those and I wouldn’t want one he said to get one it would have to evolve into lupus or sarcoidosis ect

He basically said that uctd wasn’t real it’s just a waiting phase

Which isn’t what I read but I understand what he meant and rheumatology isn’t really his field xx

[MEGS53 in reply to Buckley123]

Hi. Don't know about it being a 'waiting game', but at least you have confirmation of an AI disorder and you'll get appropriate treatment. So, upward and onward...….xxx

[Buckley123 in reply to MEGS53]

This is true meg thanks how are you xxx

[Hidden]

Hi there. Sounds like a great neurologist and I’m glad he is ignoring the other’s suggestion of Fibro or FND.

I think UCTD is a real diagnosis in itself as far as I’m aware? Plenty here seem to have it and all it means is that no one CTD has graduated into fully blown. It might never graduate but then again it might - not sure what the percentage of likelihood’s for either are. Some people have it badly and it can be as disabling as having one full blown CTD I believe - especially because of the prognostic uncertainty it brings.

But then we all live with uncertainly 24/7 - even healthy people do. So its good to at least know yours is believed, acknowledged and treated by good doctors.

Anyway it is really good that you’re to stay on Hydroxy and being monitored - these are the important things not that it has a more differentiated title. Call it Buckley Shmuckly Disease and move on with regard to the name?! UCTD is diagnosis and a name. Xx

[Buckley123 in reply to Hidden]

Thanks twitchy sorry for the late reply I don’t always get my notifications on time 🤦🏼‍♀️

Yes I think it is a diagnosis according to dr Cruz and the internet but my neurologist explained it in a different way

But I guess it’s not really his field.

I have different views all round really from every doctor but I’m going to stick with neurologist because I choose him myself he’s very highly regarded but kind and listens also willing to do tests and doesn’t pretend to know everything.

And dr Cruz I believe he really wants to help.

And they both have the same feeling on my diagnosis which I think in a nutshell is something is going on what they are not sure and could settle with little meds but will be kept an eye on in future. And it could develop into one or more others.

I think I should just see them two and leave the others alone too many cooks and all that.

It’s hard to restore my faith In Doctors but I need to its making me more ill then I think I need to be worrying on something that might never happen

Like you say no one is guaranteed tomorrow.

I think I need to get over what happened to my mum and try and move on

As my grandad said to me today love move on let it all go rest when you need to but live your life

This is my new plan

How are you ?? Xxx

[Hidden in reply to Buckley123]

You’re grandad sounds top notch🧡

I know a little about the psychological trauma of having life overly medicalised and I don’t trust most doctors at all now. But the few I will heed are those who think outside of the box and aren’t ruled by diagnostic guidelines. We are all unique human beings as my first rheumy used to say, “no one told diseases to behave according to guidelines made by a bunch of rheumies!”.

So if the nhs is having to dispense with all but those who fit neatly into their boxes then we know that things have become dire. We have to somehow re learn to trust a couple of key doctors who have goodness built into their practice and who will hopefully help us on our journey. That’s all we can do xx

[Buckley123 in reply to Hidden]

Thanks twitchy he is ❤️ both him and my Nan amaze me how no matter what they just keep going.

HAve you ever heard of thyroid antibodies but not a diagnosis? Surely it’s attacking my thyroid this is why the autoimmune antibodies are there that and all the symptoms but no medication because all my other levels are normal.

I find this all a bit wishy washy to say the least

I mean it’s attacked my brain no one batters a eye really just very 🤷‍♀️

I mean what do they want I’m guessing a heart attack or a stoke to be taken seriously 😒 😂🤦🏼‍♀️

But I guess I will just have to trust them 😩🤣 xx

[Hidden in reply to Buckley123]

I think you should follow thyroid UK HealthUnlocked and ask. I’m sure most people there will tell you that most doctors ignore the thyroid antibodies for some reason.

I am guessing that, like ANA or any of the ENA panel you can carry the antibodies for autoimmune diseases but not have them. But it’s different with thyroid disease because for some we can have antibodies with symptoms but still the main measurement used, Thyroid Stimulating Hormone/TSH, is within range. So we won’t be diagnosed or treated with autoimmune thyroid disease until we have the high or very low TSH?

This discrepancy of symptoms v TSH and the resulting debate is hugely controversial in the thyroid world. There are petitions and other stuff and the endocrinology world is at loggerheads with the huge patient community here.

What you will need, in order to get good answers there, is a breakdown of your thyroid bloods including free T3 and T4, TSH and antibody numbers.

Helpful, they will tell you, are your ferritin, folate, B12, vitamin D and others such as ESR and CRP.

If you haven’t already got these then you’ll be advised to get your own copies from GP or get the panel done privately with a company such as Blue Horizon. Once you have these you post the results there and the expert patients there advise accordingly.

Many on the thyroid UK board self medicate to good effect. I tried going outside the orthodox att the instruction of a private endocrinologist because despite having Hashimoto’s and related bloodwork and replacement I never seemed to improve much. It was a bit scary but it got me where I wanted to be with increase in T4 replacement arranged by an NHS endo and I now at least know when my TSH is too high for me. This has been incredibly useful and taking vitamin D3 in the form of AdCal D3 chased off my RA symptoms. My GP refused to test my vitamin D levels so I went private and they were critically low. I confronted GP and he prescribed me AdCal D3. I’ve never had proper depression since. This was in 2013 two years after my RA misdiagnosis.

My doctors say this is because of Sjögren’s but I suspect the two autoimmune diseases are very much overlapping.

My CTD dr tried to tell me in April that I wasn’t very autoimmune despite confirmed and treated Hashis and +ANA and lip biopsy confirmed Sjögren’s with high immunoglobulins and very high inflammation. What a twat🤷🏼‍♀️!!

It’s taken me 8 years of research to begin to grasp my own stuff a bit and I’m still nowhere remotely near where most on thyroid UK are so I don’t go there often. But I think in your case it might help because of neuro symptoms plus antibodies. Be prepared to post your blood results with name etc removed - it’s very different to this community but many have been helped with advice of admins and, lie us, they don’t trust doctors much there overall!

I’m inclined to think the main admins are pretty trustworthy and my undiagnosed Hashitomo’s and Sjögren’s would explain much of what I was feeling as a student and young parent but no one ever tested me for autoimmune diseases back then. X

[Hidden in reply to Buckley123]

Ps it is worth considering that Thyroid UK has 102.5 thousand followers - many who have lost confidence in the conventional medical world and help each other to feel better. I’m not saying this is the right way to go for you but I have learnt the hard way that we with lived experience are often best informed experts on ourselves! X

[Buckley123]

Hey

Not at all patronising

You would think wouldn’t you

But apparently because I have the antibodies of autoimmune thyroid and symptoms but my other levels of tsh t3 t4 are in the normal range I don’t qualify yet as hypo

It’s just going to slowly destroy my thyroid until I do need medication

Then maybe.

I see a ent at the end of this month il ask him to scan my thyroid see if it’s inflamed.

I don’t seem to tick enough box’s for anything atm xx

[Buckley123]

Yeah maybe il try and get the scan in first see what it says my ent should know a little about thyroid

Unfortunately I had to pay for the thyroid tests via medichecks

It can happen but I don’t think anything is done for it at my stage as soon as the hormone levels have been effected then they use medication to bring it back into range.

I find it all a little confusing tbh

No one seems to know much at the minute I have now got a uctd label

But I have brain lesions and damage caused by something Unknown

It’s a little unsettling that it seems to be making its way through my body well this is how it feels anyway.

But I’m on it don’t worry

I will get to the bottom of it.

Thanks for your reply tho means a lot helps to bounce things off others I feel as if I’m going mad at times 😂😂🤣🤪