me too, I want to actually see an autoimmune specialist, I want to understand why my body is attacking itself, I want to be cured not just treated for my symptoms. I am just getting more and more exhausted and I would like to understand the interaction of my 27 medications on my body and on my immune system. Every time I ask for an autoimmune specialist I get told there are none. Seriously thinking of throwing all of of meds out. This has been going on for 20 years first Sarcoidosis, then Hashimotos, then Hyperparathyroidism, then Coeliac disease, then Pernicious Anemeia and now testing for Rheumatoid Arthritis. In between a stroke, 5 heart stents, a brain tumour, osteoporosis, high blood pressure, low blood pressure, unstable angina, high cholesterol with no convincing that statins don’t work, bowel and urine incontinence, and wheelchair bound.I am slowly going insane, I am only 66.
multiple autoimmune : me too, I want to actually... - LUPUS UK
multiple autoimmune
I do appreciate that you - lile all of us - want a cure, But as yet, science hasn't found out the why and in most cases the how either. Until they know that - they can't work on a cure. It isn;t a doctor stalling - it is the truth.
auto immune disease is complex to understand,even worse to endure.
I’ve had various problems over the last 40 years since I had my tonsils out.everything was treated on a symptom by symptom basis.
Until 5 years ago when I thought I was struggling with my asthma.
I was dIagnosed with interstitial lung disease,caused by my over active immune system.
Also diagnosed with rheumatoid arthritis,Sjogrens disease and loads of other stuff.
Found it hard to cope with the diagnosis.
I did some cognitive behaviour Theraphy,which helped me sort my head out a little.
I also went on a living well course at a local hospice,I found it challenging,but it did help me a little.
The lung consultant said when he prescribed me a drug fofibrosis.” We’ll just have to see how it interacts with your other medication “ meaning,I think that he didn’t know.
They’ve been good,if I’ve asked a question they don’t know they will say they don’t know,which I appreciate.
I had a day when I wanted to throw all the meds in the bin.
I compromised and cut my immno suppressant dose down from 4 tabs to 3 daily.
The next Dr I saw told me off.
I ended up reducing the dose anyway,it did improve how I felt. PLEASE IM NOT RECOMMENDING THIS TO ANYONE.
The problem I had is that although M under 5 feet tall and under 10 stone,they were prescribing the same dose as much taller/ heavier adults.
I hop you have had a reasonable day.
Take care
Good answer. Lack of personalised medicine is a really big problem I’ve discovered too. I’m small framed too and often wonder why I’m the one flagging this up to my drs and nurses re doses of my various medications.
Re the cure thing: well it’s not a question anyone here can answer really. All we can do is learn up from each other and work with our doctors while they try to learn up too. The rest is all just hypothesis I’m afraid.
I had a really interesting appointment last month with a scleroderma specialist who has worked with patients like me for 40 years. He asked me a lot of questions about my work and possible exposure to toxins/ heavy metals/ environmental hazards. He then explained why he was asking and said all that I had described in reply corresponded with his experiences of people carrying my scleroderma autoantibody.
This professor anecdotally explained his theories, based on long experience. I’ve had idiopathic allergies, including anaphylaxis, while living in countryside heavily sprayed in farm pesticides, grew up breathing in heavy traffic pollution from nearby motorway and had severe reactions to medications and surgical interventions.
I’m sure a lot of us here with multiple autoimmune diseases have had similar exposure to environmental toxins and are hypersensitive to these chemicals as I am- especially those who are older and grew up in an era where the stuff being pumped into the atmosphere was far worse than even what’s happening now. All this leaves a massive long lasting legacy, as testified by fact that insect and other animal species are now being wiped out on a massive scale.
This likely also applies to the plague that is cancer and many other extremely prevalent diseases. I guess the cure would have to be end of industrialisation, fossils fuels, human greed etc? It’s future generations I feel for most because I’ve been relatively lucky to make it to 60 thanks to medical interventions although, paradoxically, these have recently nearly killed me off! Meanwhile I’m resigned to taking toxins on a trial and error basis to try and fight/ counteract the long term effects of growing up in a world full of environmental toxins. I certainly don’t blame the medical community for not having a cure. I would speculate that the only cure lies in a green revolution - and this will come too late for most of us here I’m assuming.
I agrée, i think it’s the lack of a single autoimmune specialist that I find hardest, I have my endocrinologist from Hashimotos and Hyperparathyroidism, I have a endocrine and bowel guy for my coeliac, I have a haematologist and cardiologist for my pernicious anemia, I have my pulmonary specialist for my sarcoidosis and my rheumatologist for my RA. None of whom talk to each other. I also have a neurologist and a neurosurgeon for my brain tipumour and a urologist for my incontinence. It is like talking to the Tower of Babel. Autoimmune needs recognition as a single cause for multiple diseases.
Yes I am in same position and also find the multiple specialists very hard - especially when they won’t all work together. It’s extra hard if we are hospitalised as the various other specialists won’t advise or help if we aren’t in there as one of their patients I’ve found. Poor nurses are usually left phoning around desperately and I can hear them asking and then being passed on or dismissed by the other ward in question. It’s a systemic failure really because I see patients who are in with just one well understood condition getting much better care pathways and treatment and in and out faster than those like us with multiple overlaps get.
My goodness Filicatlasy what a catalogue of life-threatening conditions you have accumulated and endured over the years. 😫 I am so sorry to hear that. And sadly, like PMPro says there are as yet no cures. It is SO unfair and although many of us on here have a cocktail of AI conditions you seem to have more than your fair share. Just know we are all here to listen to your frustrations and please vent whenever you need to. We truly understand and will offer support and tell you what helps to alleviate symptoms for us. Hang in there. Big hugs. Xxx
No the problem is autoimmune is not something that will make pharma money, it will take up resources and as more and more of us suffer from Multi Autoimmune and Mutli Endocrine which are not part of normal blood and diagnostic panels, doctors do not get trained in recognising the interactions. They then revert to treating the symptoms of each autoimmune which may mean double dosing as many autoimmune create. The same auto immune symptoms.
My aunt had lupus, hypothyroidism, sjogren's, celiac and RA. She was on medications for decades and gave up. She quit taking her medications and passed away a few months after. I have hypothyroidism, vitiligo and now possibly lupus with kidney involvement. Being a male, I run into incompetent arrogant doctors that think men rarely get these diseases. It took me 7 years to get diagnosed with hypothyroidism even though my labs were flagged for hypothyroidism for 7 years. I take levothyroxine and currently several Ayurvedic herbs that are stronger than prednisone "out of curiosity" for possible lupus. These seem to work when I go into a possible lupus flare. I get that "you don't have lupus" even though I have ALL of the classic symptoms. I've been on a study spree for years on autoimmune diseases, pharma drugs, ayurvedic supplements that act as pharma drugs. Immunosuppressants, steroids, what drugs block what. I missed my calling to be a scientific doctor lol.
I always wondered how men got on when hypothyroid. Did they get early diagnosis etc. Very interesting .
My stubborn doctors ignored my thyroid panel for 7 years, saying men rarely get it. In 2015, my TSH was already flagged. Test after test through the years had shown my TSH going higher. Still ignored. My kidneys were already failing during this time. In 2022, I finally found a doctor to diagnose me and immediately got me on levothyroxine. He has since retired. Now I am back in the same situation for possible Lupus. I was getting the face rash in 2015, but was told that it wasn't Lupus. When I get stressed out, my face gets the rash. My whole body goes downhill fast. My kidneys get inflamed. I start losing weight. I've changed my diet to gluten, sugar, dairy free, low FODMAP and renal diet.
Do you mean to exclude Gluten ? Have you been tested as can cause rashes . Good luck.
Yes, no gluten. Gluten is inflammatory. I'm currently waiting to be tested for Lupus. Gluten can trigger flares in autoimmune diseases.
You have been tested for Coeliac ? This is A I too. People cluster with it ie Sjogrens, Thyroid , and Lupus . Others too . Good luck.
When I was diagnosed with overt hypothyroidism, no info was given to me. I had to find out on my own and stumbled on this site which has been extremely helpful.
Yes many of us have found that too. So glad you found this site. So much information that is helpful. So many links into hypothyroidism and other AI conditions.
Just wondering about the term you use, “overt hypothyroidism “ ? 🧐
I, myself have been diagnosed with primary hypothyroidism. Are these terms used interchangeably and are not actually the same?
As I also have lupus, SLE and lupus nephritis it’s all part of the AI spectrum of disorders that affect us all eventually?!
IDK that my hypothyroidism is in no way drug induced. “Overt” seems that your T3/T4//TSH levels have been noticed by drs as abnormal without a specific cause?
Regards
Overt Hypothyroidism: clear hypothyroidism an increased TSH and a decreased T4 level. As for the cause, no doctor has explained anything to me. I was the one that began researching everything. My doctors were clueless. I highly suspect I have Lupus Nephritis, but making a doctor listen is difficult since I am a male. 1 in 10 Lupus patients are male. I told my dr I will bring in 9 other males and 1 of us will have Lupus. 2 males in my family had Lupus. Both passed away from complications. I've been arguing my case for 2 years now.
so sorry to hear your problems.Have you considered seeing guidance from a Functional Medicine doctor?
They may be able to help you with your quest and will add in nutrition and lifestyle advice.
Unfortunately there are only a few NHS docs who have this training and you may need to seek private advice.
Good luck
PS please research renal diets, I have read a few articles suggesting that the traditional low protein may not be required and that protein is important.
You might look at the work of David Unwin, don't be put off by his link with T2 Diabetes. This is about metabolic health.
The public health collaboration have many interesting presentations on YouTube as well.
No I have never heard of a functional medical doctor, how would I find one
try this list or Google, the ifm has a find a doc section.bc-fm.org/trustees
Autoimmune hepatitis
Autoimmune Disease or not?
Autoimmune hepatits
Is a high ANA meaningful on it's own, or is it only useful if you have other high markers on other autoimmune tests?
Now I am cross! Why don't doctors communicate with patients??!
