Autoimmune conditions

Watch
Anonymous #1
#1
Report Thread starter 3 years ago
#1
I was wondering if anybody can help me with how to diagnose (or rule out) autoimmune issues?

I have been having various issues for a few years now and they are all things that have links to autoimmune issues. Theoretically these are individually explained by things like IBS, vitamin deficiencies, eczema, hypothyroidism etc, but I find it unlikely that these are all a coincidence seeing as they are all things with links to autoimmune conditions and because I haven't felt too much improvement despite treatment for all of them.
I also have some issues that are a bit iffy as to where they come from and would probably make more sense if they were a symptom of an autoimmune condition as opposed to the vague link to other conditions I have that just don't seem to match.

Anyway, I've never particularly approached this with my doctors as I tend to feel like they think i'm a hypochondriac anyway, but I'm just starting to get more and more reasons to think I have an autoimmune issue.
My doc did at one point mention the possibility of diagnosing fibomialgia if things don't improve, but I am certain that isn't the problem as I don't get the classic pains. I'm hoping this might be a good time to bring up the autoimmune angle though.

I don't want to blab on any longer so if anybody wants more detail just ask me. I'm willing to answer anything and look down any route if it will give me answers. I'm getting really desperate at this stage.

My question is, how do I approach this with my doctor given they already see me as a bit of a hypochondriac? I do have private insurance which I am willing to use and my doc would probably give me a referral for, but is there even a specialist for autoimmune conditions?

I would really appreciate any help people can offer.
0
reply
username2911200
Badges: 19
Rep:
?
#2
Report 3 years ago
#2
(Original post by Anonymous)
I was wondering if anybody can help me with how to diagnose (or rule out)
You are not a doctor, you can't diagnose or rule out anything, don't put your health at risk because of things you read on the internet. You've said you haven't brought these issues up with your doctors, that's the first thing you should do. Don't delude yourself into thinking you can do this yourself, you can't, you'll end up making yourself even worse.
0
reply
OxFossil
Badges: 17
Rep:
?
#3
Report 3 years ago
#3
(Original post by Anonymous)
I was wondering if anybody can help me with how to diagnose (or rule out) autoimmune issues?

I have been having various issues for a few years now and they are all things that have links to autoimmune issues. Theoretically these are individually explained by things like IBS, vitamin deficiencies, eczema, hypothyroidism etc, but I find it unlikely that these are all a coincidence seeing as they are all things with links to autoimmune conditions and because I haven't felt too much improvement despite treatment for all of them.
I also have some issues that are a bit iffy as to where they come from and would probably make more sense if they were a symptom of an autoimmune condition as opposed to the vague link to other conditions I have that just don't seem to match.

Anyway, I've never particularly approached this with my doctors as I tend to feel like they think i'm a hypochondriac anyway, but I'm just starting to get more and more reasons to think I have an autoimmune issue.
My doc did at one point mention the possibility of diagnosing fibomialgia if things don't improve, but I am certain that isn't the problem as I don't get the classic pains. I'm hoping this might be a good time to bring up the autoimmune angle though.

I don't want to blab on any longer so if anybody wants more detail just ask me. I'm willing to answer anything and look down any route if it will give me answers. I'm getting really desperate at this stage.

My question is, how do I approach this with my doctor given they already see me as a bit of a hypochondriac? I do have private insurance which I am willing to use and my doc would probably give me a referral for, but is there even a specialist for autoimmune conditions?

I would really appreciate any help people can offer.
Systemic auto-imune disorders - like lupus/SLE, Mixed Connective Tissue Disease and so on - are usually managed by rheumatologists.

The LupusUK information leaflets might be helpful here, and there's one on diagnosis. Many people find it takes a long time to get diagnosed - the HealthUnlocked forum is a good place to get ideas and hear about others' experiences - and it may help to rule systemic auto-immunity out too!
0
reply
username1801813
Badges: 2
Rep:
?
#4
Report 3 years ago
#4
(Original post by Anonymous)
I was wondering if anybody can help me with how to diagnose (or rule out) autoimmune issues?

I have been having various issues for a few years now and they are all things that have links to autoimmune issues. Theoretically these are individually explained by things like IBS, vitamin deficiencies, eczema, hypothyroidism etc, but I find it unlikely that these are all a coincidence seeing as they are all things with links to autoimmune conditions and because I haven't felt too much improvement despite treatment for all of them.
I also have some issues that are a bit iffy as to where they come from and would probably make more sense if they were a symptom of an autoimmune condition as opposed to the vague link to other conditions I have that just don't seem to match.

Anyway, I've never particularly approached this with my doctors as I tend to feel like they think i'm a hypochondriac anyway, but I'm just starting to get more and more reasons to think I have an autoimmune issue.
My doc did at one point mention the possibility of diagnosing fibomialgia if things don't improve, but I am certain that isn't the problem as I don't get the classic pains. I'm hoping this might be a good time to bring up the autoimmune angle though.

I don't want to blab on any longer so if anybody wants more detail just ask me. I'm willing to answer anything and look down any route if it will give me answers. I'm getting really desperate at this stage.

My question is, how do I approach this with my doctor given they already see me as a bit of a hypochondriac? I do have private insurance which I am willing to use and my doc would probably give me a referral for, but is there even a specialist for autoimmune conditions?

I would really appreciate any help people can offer.
I know someone who can help give a diagnosis, the doctor. Go and see him.
0
reply
quasa
Badges: 20
Rep:
?
#5
Report 3 years ago
#5
(Original post by Anonymous)
I was wondering if anybody can help me with how to diagnose (or rule out) autoimmune issues?

I have been having various issues for a few years now and they are all things that have links to autoimmune issues. Theoretically these are individually explained by things like IBS, vitamin deficiencies, eczema, hypothyroidism etc, but I find it unlikely that these are all a coincidence seeing as they are all things with links to autoimmune conditions and because I haven't felt too much improvement despite treatment for all of them.
I also have some issues that are a bit iffy as to where they come from and would probably make more sense if they were a symptom of an autoimmune condition as opposed to the vague link to other conditions I have that just don't seem to match.

Anyway, I've never particularly approached this with my doctors as I tend to feel like they think i'm a hypochondriac anyway, but I'm just starting to get more and more reasons to think I have an autoimmune issue.
My doc did at one point mention the possibility of diagnosing fibomialgia if things don't improve, but I am certain that isn't the problem as I don't get the classic pains. I'm hoping this might be a good time to bring up the autoimmune angle though.

I don't want to blab on any longer so if anybody wants more detail just ask me. I'm willing to answer anything and look down any route if it will give me answers. I'm getting really desperate at this stage.

My question is, how do I approach this with my doctor given they already see me as a bit of a hypochondriac? I do have private insurance which I am willing to use and my doc would probably give me a referral for, but is there even a specialist for autoimmune conditions?

I would really appreciate any help people can offer.
fibromyalgia isnt considered autoimmune tbh. its considered musculoskeletal but in any case you a) need to see a gp and b) they wouldneed to refer you to a rheumatologist if the fibro diagnosis is wrong / symptoms persist or worsen.

With private insurance they can be a bit iffy about referrals as certain ones begining with B need you to be on the waiting list for NHS referral and that even you need to be waiting for more than 6-12 weeks to be considered by them (you also need to be referred by an NHS gp which doesnt help either).

In terms of immune conditions specialists, they vary depending on the condition. Rheumatologists would be for things affecting joints and connective tissue;

eczema is a skin condition and that would need to be seen by dermatologists (psoriasis can be both skin and rheumatic based on presentation ie where it is affecting you). but in any case, see a GP first
0
reply
Anonymous #1
#6
Report Thread starter 3 years ago
#6
(Original post by Glassapple)
You are not a doctor, you can't diagnose or rule out anything, don't put your health at risk because of things you read on the internet. You've said you haven't brought these issues up with your doctors, that's the first thing you should do. Don't delude yourself into thinking you can do this yourself, you can't, you'll end up making yourself even worse.
(Original post by hamzakalinle)
I know someone who can help give a diagnosis, the doctor. Go and see him.
Sorry I seem to have made myself a little unclear. If I wanted to just diagnose myself I would have done it already. I want actual answers.
I am not trying to diagnose myself. I am (as I have mentioned already) trying to work out how to approach it with my doctor or anything I can do to help myself find a diagnosis or rule it out.

Every diagnosis I've had so far has involved me pushing because it's very easy for my doctors to dismiss things. The only reason I was diagnosed with hypothyroidism is cos I researched the most likely possibilities and kept nagging until they sent me to somebody to get it tested. That's when it was confirmed and that's when I considered myself to have it. That's the same thing I'm doing here.

Thanks though
0
reply
OxFossil
Badges: 17
Rep:
?
#7
Report 3 years ago
#7
(Original post by Anonymous)
Sorry I seem to have made myself a little unclear. If I wanted to just diagnose myself I would have done it already. I want actual answers.
I am not trying to diagnose myself. I am (as I have mentioned already) trying to work out how to approach it with my doctor or anything I can do to help myself find a diagnosis or rule it out.

Every diagnosis I've had so far has involved me pushing because it's very easy for my doctors to dismiss things. The only reason I was diagnosed with hypothyroidism is cos I researched the most likely possibilities and kept nagging until they sent me to somebody to get it tested. That's when it was confirmed and that's when I considered myself to have it. That's the same thing I'm doing here.

Thanks though
Just to make sure you didn't miss it, I'm going to recommend the LupusUK HealthUnlocked forum again!
0
reply
Anonymous #1
#8
Report Thread starter 3 years ago
#8
(Original post by OxFossil)
Systemic auto-imune disorders - like lupus/SLE, Mixed Connective Tissue Disease and so on - are usually managed by rheumatologists.

The LupusUK information leaflets might be helpful here, and there's one on diagnosis. Many people find it takes a long time to get diagnosed - the HealthUnlocked forum is a good place to get ideas and hear about others' experiences - and it may help to rule systemic auto-immunity out too!
Thank you. I'll look into those links and remember about rheumatologists for when the time comes.
0
reply
username2911200
Badges: 19
Rep:
?
#9
Report 3 years ago
#9
(Original post by Anonymous)
I was wondering if anybody can help me with how to diagnose
(Original post by Anonymous)
I am not trying to diagnose myself
Could have fooled me.
0
reply
OxFossil
Badges: 17
Rep:
?
#10
Report 3 years ago
#10
(Original post by Anonymous)
Thank you. I'll look into those links and remember about rheumatologists for when the time comes.
I spend a lot of time there myself - under an alias!
0
reply
Anonymous #1
#11
Report Thread starter 3 years ago
#11
(Original post by quasa)
fibromyalgia isnt considered autoimmune tbh. its considered musculoskeletal but in any case you a) need to see a gp and b) they wouldneed to refer you to a rheumatologist if the fibro diagnosis is wrong / symptoms persist or worsen.

With private insurance they can be a bit iffy about referrals as certain ones begining with B need you to be on the waiting list for NHS referral and that even you need to be waiting for more than 6-12 weeks to be considered by them (you also need to be referred by an NHS gp which doesnt help either).

In terms of immune conditions specialists, they vary depending on the condition. Rheumatologists would be for things affecting joints and connective tissue;

eczema is a skin condition and that would need to be seen by dermatologists (psoriasis can be both skin and rheumatic based on presentation ie where it is affecting you). but in any case, see a GP first
Thanks. My GPs are alright with private referrals. I guess it gets me out of their hair. It's how i've ended up with most of my current diagnoses. And the insurance company i'm with is pretty good with wait time (usually only a week or so even for surgery).
I'm hoping that since my GP is willing to consider the one diagnosis (fibo) he would be willing to consider others too. It's helpful to know what directions to look in.
Thanks again
0
reply
ComicalUsername
Badges: 18
Rep:
?
#12
Report 3 years ago
#12
(Original post by Anonymous)
I was wondering if anybody can help me with how to diagnose (or rule out) autoimmune issues?

I have been having various issues for a few years now and they are all things that have links to autoimmune issues. Theoretically these are individually explained by things like IBS, vitamin deficiencies, eczema, hypothyroidism etc, but I find it unlikely that these are all a coincidence seeing as they are all things with links to autoimmune conditions and because I haven't felt too much improvement despite treatment for all of them.
I also have some issues that are a bit iffy as to where they come from and would probably make more sense if they were a symptom of an autoimmune condition as opposed to the vague link to other conditions I have that just don't seem to match.

Anyway, I've never particularly approached this with my doctors as I tend to feel like they think i'm a hypochondriac anyway, but I'm just starting to get more and more reasons to think I have an autoimmune issue.
My doc did at one point mention the possibility of diagnosing fibomialgia if things don't improve, but I am certain that isn't the problem as I don't get the classic pains. I'm hoping this might be a good time to bring up the autoimmune angle though.

I don't want to blab on any longer so if anybody wants more detail just ask me. I'm willing to answer anything and look down any route if it will give me answers. I'm getting really desperate at this stage.

My question is, how do I approach this with my doctor given they already see me as a bit of a hypochondriac? I do have private insurance which I am willing to use and my doc would probably give me a referral for, but is there even a specialist for autoimmune conditions?

I would really appreciate any help people can offer.
I highly recommend telling your doctor your exact symptoms so they can kind of file you into the right category. I would advise making a list of your symptoms and describe the level of pain and/or interference these symptoms have on your day to day life.

I myself was diagnosed with Systemic Onset Juvenile Arthritis at a young age and was only referred once I was paralysed so even if they do think you're a hypochondriac , you need to be persistent and tell them your symptoms , even if you have to go 10 times before they refer you because you wouldn't be repeatedly be going to your doctor if you didn't feel like you had an issue.

There are specialists for autoimmune diseases and they are called rheumatologists.

A quick extra point I would like to make is that you should try and avoid self diagnosing. Firstly, because you never and secondly it is possible to be labelled as more of a hypochondriac if you understand what I mean.

If you want to speak to me or anything feel free to pm me
0
reply
Anonymous #1
#13
Report Thread starter 3 years ago
#13
(Original post by Glassapple)
Could have fooled me.
Read the rest of the post love. I made one little mistake to start- should have said "get a diagnosis for"- but the rest goes on about approaching it with a doctor and getting a private referral. Should be pretty obvious I plan to see a doc about it.
0
reply
Anonymous #1
#14
Report Thread starter 3 years ago
#14
(Original post by OxFossil)
I spend a lot of time there myself - under an alias!
Are... are you autoimmune Batman?

(Original post by ComicalUsername)
I highly recommend telling your doctor your exact symptoms so they can kind of file you into the right category. I would advise making a list of your symptoms and describe the level of pain and interference these symptoms have on your day to day life.

I myself was diagnosed with Systemic Onset Juvenile Arthritis at a young age and was only referred once I was paralysed so even if they do think you're a hypochondriac , you need to be persistent and tell them your symptoms , even if you have to go 10 times before they refer you because you wouldn't be repeatedly be going to your doctor if you didn't feel like you had an issue.

There are specialists for autoimmune diseases and they are called rheumatologists.

A quick extra point I would like to make is that you should try and avoid self diagnosing. Firstly, because you never and secondly it is possible to be labelled as more of a hypochondriac if you understand what I mean.

If you want to speak to me or anything feel free to pm me
Thanks. That's exactly what i'm trying to avoid. I obviously expect autoimmune and would like to rule it out, but I don't want them to think i'm just trying to diagnose myself. I had a conversation with my GP where he was saying if I want pills just thrown at me and so on which really annoyed me. I don't just want pills or a diagnosis for the hell of it. I want actual answers so I can feel better.
Unfortunately i'm finding myself more and more in the position where I have to push if I want anything to get done.
I may try another appt where I bring a big list, but they tend to end up just focusing on one little part of it. I'm hoping to find a bit of direction to look in, even if it just ends up as a dead end and I need to find another direction later.

Well it's at least nice to know i'm not the only one who had to/ has to go through this process. Thank you
0
reply
OxFossil
Badges: 17
Rep:
?
#15
Report 3 years ago
#15
(Original post by Anonymous)
Are... are you autoimmune Batman?

I may try another appt where I bring a big list, but they tend to end up just focusing on one little part of it. I'm hoping to find a bit of direction to look in, even if it just ends up as a dead end and I need to find another direction later.

Well it's at least nice to know i'm not the only one who had to/ has to go through this process. Thank you
Yes, I go under a variety of diagnoses! At different times in the last year, my main auto-immune symptoms have been labelled as Sjogrens' Syndrome, Undifferentiated Connective Tissue Disease, Interstitial Lung Disease and more. I think my latest is UCTD with ILD and Fibromyalgia. (I contest the latter, but since there is no substantive treatment anyway, it hardly matters)!

One of the things about systemic AI disorders is that diagnosis is often rather fluid; it's not at all uncommon for people to be diagnosed with one label under consultant X and then have it changed under consultant Y. This doesn't necessarily matter, as the treatments tend to be very similar - typically, hydroxycholoquine plus steroids for the AI disorder, plus other meds for any additional symptoms. Its also very common for people to go for years with a variety of AI-like symptoms but no definitive diagnosis. Fibromyalgia is a thing, of course, but it's a diagnosis that is notorious as a bit of a :dontknow: when the medics have run out of other ideas.

The reason I recommend the LupusUK HealthUnlocked forum is that - unlike every other patient forum I have ever used - it is both active and has a good variety of well informed users. Every day, it has new posters asking about possible diagnoses and how to manage symptoms, and only a minority have a formal diagnosis of lupus/SLE. I think you may find it helpful. Good luck anyway.
0
reply
Anonymous #1
#16
Report Thread starter 3 years ago
#16
(Original post by OxFossil)
Yes, I go under a variety of diagnoses! At different times in the last year, my main auto-immune symptoms have been labelled as Sjogrens' Syndrome, Undifferentiated Connective Tissue Disease, Interstitial Lung Disease and more. I think my latest is UCTD with ILD and Fibromyalgia. (I contest the latter, but since there is no substantive treatment anyway, it hardly matters)!

One of the things about systemic AI disorders is that diagnosis is often rather fluid; it's not at all uncommon for people to be diagnosed with one label under consultant X and then have it changed under consultant Y. This doesn't necessarily matter, as the treatments tend to be very similar - typically, hydroxycholoquine plus steroids for the AI disorder, plus other meds for any additional symptoms. Its also very common for people to go for years with a variety of AI-like symptoms but no definitive diagnosis. Fibromyalgia is a thing, of course, but it's a diagnosis that is notorious as a bit of a :dontknow: when the medics have run out of other ideas.

The reason I recommend the LupusUK HealthUnlocked forum is that - unlike every other patient forum I have ever used - it is both active and has a good variety of well informed users. Every day, it has new posters asking about possible diagnoses and how to manage symptoms, and only a minority have a formal diagnosis of lupus/SLE. I think you may find it helpful. Good luck anyway.
Thank you for all the info and advice. I've found a rheumatologist near me who I think my insurance will cover so I think i'll do a bit more digging online then ask my GP about that.
Considering he's willing to give me a random diagnosis of fibo (despite it not making sense) i'm hoping he'll be willing to give me a referral to see a specialist instead.
And I will be sure to check out that forum. Even if this autoimmune head hunt turns up nothing I still have the Hashimoto's going on so it'd be good to learn a bit more about that if I can.

Thanks again and good luck with everything you have going on
0
reply
OxFossil
Badges: 17
Rep:
?
#17
Report 3 years ago
#17
(Original post by Anonymous)
Thank you for all the info and advice. I've found a rheumatologist near me who I think my insurance will cover so I think i'll do a bit more digging online then ask my GP about that.
Considering he's willing to give me a random diagnosis of fibo (despite it not making sense) i'm hoping he'll be willing to give me a referral to see a specialist instead.
And I will be sure to check out that forum. Even if this autoimmune head hunt turns up nothing I still have the Hashimoto's going on so it'd be good to learn a bit more about that if I can.

Thanks again and good luck with everything you have going on
You will need the blood tests that the LupusUK leaflet mentions, so it may save you some money if you can persuade your GP to do those so that your private consultation doesn't charge you for those bloods also
0
reply
Anonymous #1
#18
Report Thread starter 3 years ago
#18
(Original post by OxFossil)
You will need the blood tests that the LupusUK leaflet mentions, so it may save you some money if you can persuade your GP to do those so that your private consultation doesn't charge you for those bloods also
Thanks for the suggestion. Luckily my GP will usually do any blood test a consultant suggests. That or the insurance company will cover some diagnostic tests so would hopefully cover the bloods if I can't get the GP to do them.
0
reply
physiogradmed
Badges: 7
Rep:
?
#19
Report 3 years ago
#19
Hi,

I have an autoimmune condition called Seronegative Spondyloarthritis and take a couple of different types of immunosuppressants to try and keep the inflammation in check.

It does sound like you have a good few things going on, and I agree with everyone else that going to the GP is a good starting point. If I were you, I would make a list of your symptoms and how long they have been going on for, and even keep a symptom log for a few weeks so you and your GP can identify any potential triggers for symptoms. I wouldn't necessarily say to your GP that you are worried about an autoimmune condition, but rather something along the lines of "these symptoms have been going on for quite a while and I am concerned that there may be an underlying reason for them, can we check things out to make sure everything is okay", and then you could bring in if you have a family history of autoimmune conditions which might help to rule things in or out. GPs are usually quite happy to run a full blood count which looks at various levels, and to do some preliminary investigations which might help guide them to what is going on, or to referral to particular specialists.

I'm sorry you've not been feeling well - I hope you get some answers soon. It took me 8 years to get my diagnosis.

Take care,
Physiogradmed
0
reply
Anonymous #1
#20
Report Thread starter 3 years ago
#20
(Original post by physiogradmed)
Hi,

I have an autoimmune condition called Seronegative Spondyloarthritis and take a couple of different types of immunosuppressants to try and keep the inflammation in check.

It does sound like you have a good few things going on, and I agree with everyone else that going to the GP is a good starting point. If I were you, I would make a list of your symptoms and how long they have been going on for, and even keep a symptom log for a few weeks so you and your GP can identify any potential triggers for symptoms. I wouldn't necessarily say to your GP that you are worried about an autoimmune condition, but rather something along the lines of "these symptoms have been going on for quite a while and I am concerned that there may be an underlying reason for them, can we check things out to make sure everything is okay", and then you could bring in if you have a family history of autoimmune conditions which might help to rule things in or out. GPs are usually quite happy to run a full blood count which looks at various levels, and to do some preliminary investigations which might help guide them to what is going on, or to referral to particular specialists.

I'm sorry you've not been feeling well - I hope you get some answers soon. It took me 8 years to get my diagnosis.

Take care,
Physiogradmed
Hi there. Thanks so much for your reply.

I saw my GP a month or so ago and told him I was worried cos I still don't feel well even after my various treatments. He said we'd see how my thyroid is after the next test and if that's fine then he could diagnose fibromialgia. I've had my results back and seen another doc since and apparently my thyroid is fine now so i'm planning to go in a say something about that and how I'd like to see a specialist to rule anything else out before a fibo diagnosis cos there isn't much you can do about that and it's basically a diagnosis of "got issues. dunno why". (Plus i'm pretty sure it's not fibo cos I don't have much pain and that's a big part of it).

Given he seems willing to diagnose me with something based on this i'm hoping he'll be willing to give me a referral instead. I'd be able to use insurance so all I need is him to agree and give me a referral and i'm set.

So yeah, i'm hoping that will work out and i'm doing a list and going to see if I can get my hands on all my past test results to take to the specialist. If all goes well I might get some answers within the next month or so which would be awesome. This has been going on for years now and I'm just getting so fed up with all of it.

Thanks again for the reply
0
reply
X

Quick Reply

Attached files
Write a reply...
Reply
new posts
Back
to top
Latest
My Feed

See more of what you like on
The Student Room

You can personalise what you see on TSR. Tell us a little about yourself to get started.

Personalise

Should there be a new university admissions system that ditches predicted grades?

No, I think predicted grades should still be used to make offers (554)
33.95%
Yes, I like the idea of applying to uni after I received my grades (PQA) (674)
41.3%
Yes, I like the idea of receiving offers only after I receive my grades (PQO) (330)
20.22%
I think there is a better option than the ones suggested (let us know in the thread!) (74)
4.53%

Watched Threads

View All