Sarcoidosis - not enough care and attention given to sufferers

No longer can they class it as rare.....

These forums are clear evidence.

Still people are mystified when I say I have it, they say what on earth is that, but on the other hand it is mentioned far more in various thinsg now

I don't think it is as rare as the statistics show but I believe it is more rare than TB (8000 reported cases a year and climbing) and lymphoma ( 6th most common cancer in UK as of 2011) hence the reason for Sarcoidosis being tested last in the line of 3.

I don't consider Sarcoidosis ahead of cancer as cancer is widespread throughout my family and I am painfully aware of what cancer does. However, I don't like to put any disease in front of another disease because diseases affect people differently and although some people think cancer is the worst disease ever others would challenge that because of how they are suffering. For example, like feeling as though you are suffocating from chronic obstructive pulmonary disease. I don't think cancer needs any more publicity anyway because almost everyone knows what cancer is and what it can do, but auto immune diseases do need much more publicity and then maybe it will get the recognition it needs in order to try and find cures. Much more money is set aside for the treatment and research of cancer (rightly so) however, I strongly believe that Sarcoidosis and all other auto-immune diseases need much more research now because immune disease seems to be on the increase and can tie in with cancers. For example, a patient who comes to clinic complaining of having found a lump in her breast, one of the first things that are checked are her Lymph nodes which are part of the immune system and can facilitate the spread of cancerous cells around the body. So I believe to understand about cancers you need to understand the immune system and its role in what has happened to the patient. Cancer, like the immune system is a part of us. Putting it in a very simplitic way, cancer is normal body cells that have become abnormal cells. Sarcoidosis is our own immune system attacking us when we are actually healthy and causing us to become very unwell. I hope everyone gets where I'm going with this. I'm not saying one disease is worse than another or that we should ignore one disease in favour of another, what I am saying is that Sarcoidosis certainly needs brought up to the front so that more and better care can be taken of its sufferers and it definitely needs far more research done. As do all immune problems. I know of two people who have died from Sarcoidosis but more than half of my family have died from cancers and a further quarter have been fighting cancers but cancer is highlighted and advertised about all the time. Not once have I heard of an auto immune disease being advertised on TV.  I actually hate the advert for cancer - go see your doctor about your cough - it could be cancer. Go see your doctor about blood in your poo - it could be cancer. Actually it is more likely to be something other than cancer but it doesn't say that. I would say these adverts are actually more likely to scare people away from their GP because they believe if they don't get tested and don't know the result, then they won't have it. Believe me that is actually a true representation of some of the people's thoughts on cancer.. Cancer is still talked about in hushed whispers. Less so but it still happens. Anyway I'm going off the subject. I think if you always highlight one disease then other diseases get left behind. The proof of that is shown in the puzzled look on people's face when you say, "I have Sarcoidosis" and it turns out that the puzzled look is on a doctor's face! I wish I had an answer of how to bring Sarcoidosis to the front but then there are so many 'rare' diseases that some people have never heard of so in a sense it would be unfair to those sufferers not to try and highlight their disease.

I often wonder if we just get so used to some dieases being around that we almost forget they are there. Perhaps that is why they feel the need to 'advertise' cancer.

 

The trouble is that although there appears to be a lot of people on the forum the numbers are still very low compared to other diseases. You'd have to take a census of 100,00 people in the UK as that is what they used to conclude there were only 19 people out of this figure who suffered from Sarcoidosis. Another census said 1 in 10,000 so God alone knows what the real figures are. I do think we would find it higher than these figures though. 

Hello everyone ~

June I wanted to touch base with regards to the statement you made about one disease being worse than another and even cancer.  When I had my biopsy, the doctor came out and told my husband that I do in fact have sarcoidosis.  My husband responded "schew, at least it's not cancer".  The doctor told him that we may wish it was cancer because we would at least know what we were dealing with but sarcoidosis can have far worse side effects and there isn't any cure. 

The doctor acknowledged exactly what you were saying about other's would challenge the fact that cancer is worse than any other disease.

 I'm not minimizing cancer because it is an awful,painful life while dealing with it.  But I tend to be with you in regards to one worse over another....I believe each person suffers their own demons and some do it with ease and others suffer much more than another.  I hope that/this makes sense lol

Anyway, long story short, I'm agreeing with you, June.

Take care

Frustrated

Hi Gustav

Don't know for sure but I'd reckon the immunodeficiency screen is probably the endocrinologist's idea. I see one as well for other problems with elevated adrenal hormone levels and they look for antibodies to different things every so often. 

I'm presuming the endocrine folk you're going to see feel something like that will give a better picture of what's going on and how they can best help you. 

Hope all goes well

Morag

Hi Gustav,

Your endocrine system consists of glands (thyroid, pancreas, parathyroid, adrenal, pituitary and testes (in male) all producing hormones for various needs of the body. When we have to take steroids (or some other drugs which can affect the hormone production) it causes the glands to secrete more or less of the hormones they normally produce.The doctor has to take extra precautions because if hormone levels are messed around with it can cause serious problems for the patient. This is why we have to be weaned slowly off steroids as sudden withdrawal can be catastrophic. In your and my case we are on steroids for life so they need to keep a close watch on us. For example, too little thyroxin produced by the thyroid can cause hypothyroidism. Cortisol produced by the adrenals keep your blood pressure and cardiac system stable. Too much cortisol can cause Cushing Syndrome so fat is distributed around the abdomen on the chest and around the face (classic moon face) and back of neck while arms and legs remain thin.

So having read this I'm hoping that you understand that because you have become reliant on the steroids you endocrine system may be running on different levels of different hormone either in one area or through out. With this in mind the doctor will possibly have to start you on certain medication or hormones to counteract what is happening.

As regards to the immunodeficiency screen he may be doing it to determine whether you have CVID which is Common Variable Immunodeficiency. People who have CVID and then develop Sarcoidosis have hypogammaglobulinemia which is is a disorder that is caused by a lack of B-lymphocytes and a resulting low level of immunglobulins (antibodies) in the blood causing the patient to be far more suseptible to infections etc. As opposed to Hypergammaglobulinemia which is a rare, hereditary medical condition in which the patient has abnormally high gamma globulin (antibodies) levels. In other words, too many antibodies in the blood.

Aside from elevated antibody levels, other symptoms of hypergammaglobulinemia include enlarged tonsils, lymph nodes, liver and spleen; along with anemia; poor immunity; and susceptibility to bacterial and opportunistic infections. All this causes the immune system to be heavily weakened.

With all this I am assuming your doctor perhaps thought you had or have one of these problems (too much too little antibodies) either along with your Sarcoidosis or before you were diagnosed with sarcoidosis. Perhaps he thinks this is why your Sarcoidosis is not going into remission and he is wondering if something else is going on in your immune system and therefore has asked for a full screen, although you would think he would have been asked for it to be done a long time ago!

I hope some of this has helped explain some things. Screening for CVID seems to be still in the research stages as they do not know why or how CVID and Sarcoidosis are associated but I believe the finding so far are that some people with CVID can develop Sarcoidosis and not the other way around. I hope I haven't confused you further as it could just be a test the doctor wants to carry out for his own personal research. Who knows?

Please let us know when you find out. Good luck for your screening too.

June

Blimey I understand a hell of a lot more now! Thank you! When I received the letter and blood forms from my consultant I didn't know what the test was for. No explanation was given. I eventually came to the conclusion that it was related to the endocrinology appointment. I see the endo consultant next Tuesday and will be sure to let you know how I get on. Thanks again June, your post was most helpful.

 

Oh Cassy you poor thing. Yes I have heart palpatations a lot and yes it is frightening. The terrible chest pain I got turned out to be an very enlarged lymph gland in my chest. It certainly does feel like a heart attack and the pain is excrutiating so I really feel for you.

Are you drinking an awful lot of tea or coffee? I found this added to my palpatation problem too so if you are try swapping to water it helps a lot.

Surprisingly the sarcoid wasn't detected in my heart although my heart trace shows inverted T-waves although no one seems to be able to explain why, but fingers crossed it isn't sarcoidosis in your heart either. Heart sarcoid thankfully is at the rare end of the scale unlike lung sarcoidosis which is common along with swollen lymph glands. You just have to think about what it feels like to have mumps if you had them when you were a child. I can remember how painful they were so it's hardly surprising that you are in such pain in your chest if in fact it is swollen lymph glands in your chest.

Have you had any bronchoscopies or biopsies done? Why on earth did they send you back home without checking you further. You need to go scream at your GP to phone the consultant's secretary (while you are in your GPs clinic)  to get you an emergency appointment.

Thinking of you and wishing best of luck for the ecg etc results.

Hugs

June

 

Sorry Cassy I should have said it wasn't just the tea and coffee that gave me chronic palpatations just that they didn't help. I also get SVT which is when the heart races (around 194 beats per minute) and doesn't pump properly but sort of fibrillates. It's really terrible as I get a morbid feeling of dying. (which apparently is how most people who have this feel!). I have to put my thumb in my mouth against my inner cheek and blow hard, as though inflating a balloon. Believe it or not it does actually work and flips my heart into normal rhythm.

I wish I did live in the Yorkshire area I would come and chat with you and we could go kick down the consultants door together.ha ha!

Actually I am looking into moving either to the Yorkshire/Derbyshire or Lake district area. I really love it there and would prefer to live out the rest of my life there than where I am at present.

 Please don't just accept that the NHS has a long waiting list, your symptoms are getting worse so you have a right to be seen sooner but it is up to you to be more forceful and not let them walk all over you. If you do then you will be waiting forever.

Hugs,

June x

Oh Cassy so sorry to hear this.

Glad to hear you are back up to coming on the forum.

Hope things get sorted out for you soon

 

Hi June,

while  I was at A&E I asked if they could write to the resp consultant to inform him of the probable diagnosis of sarcoids & asked how him how certain he was of this being the  cause. The A&E doc informed me that it's emergency care only in the department & they have ruled out an heart attack & I would need further investigations to be carried out by my specialist. I was told that I had to contact the specialist secretary to ask if my appointment could be brought forward. a tad rude I thought was especially due to the pain I'm having. So was sent home with painkillers.

I faxed my specialist the discharge letter & spoke to his secretary who was appalled that they hadn't done a chest X-ray, listening to my chest or written a letter to resp consultant. She said even if I needed my appt bringing forward there probably wouldn't be an appt available as the clinic is so busy

I've had a bronchoscopy & an ebus. biopsies of my nodules & lymph nodes & due to have a lung biopsy once I've had anotherCT scan to check safe to do it & to see if any changes. They say they are almost certain it's sarcoids but need to rule out other things & need to be 100% sure.

I will go to GP as still having chest pain & also occasional dizzy spells so hoping not linked. I tend to drink decaf tea these days.

yorkshire is lovely. I hope you get chance to visit or regime to an area that you will be happier xx 

Hi Cassy, I hope you are feeling a bit better today. It is possible that your dizziness is due to your breathlessness or you could possibly be hyperventilating because you are in pain. Lack of oxygen will certainly cause you dizziness. The CT-scan should show up any enlarged lymph nodes and anything that is going on in your lungs. The biopsies should show granulomas if it is sarcoidosis. Granulomas are like little clumps of immune cells that are nodular in appearance and appear in inflammed tissue. If the granulomas appear in the organs of the body then they can and often do alter how that organ works.

Unfortunately I can't remember what eased my chest pain although I think it probable was the steroids but until they have a proper diagnoses your GP might find it difficult to offer you anything for the pain. Sorry I don't mean to sound defeatist but it is better to get the right medication the first time. You never know he might consider starting you on a low dose of steroids if he has any results that show inflammation of the tissues. Don't self medicate, please because at this point not knowing what is causing the pain could mean that taking pain killers or anti-inflammotory drugs like Ibuprofen could have an adverse effect and you don't want that. If you have a good GP hopefully he will phone the consultant and ask for an immediate emergency appointment. I don't know what is wrong with A&E doctors not taking the reins and phoning consultants etc except that invariably they are junior doctors doing their A&E rotation so are unfortunately unsure of what they can and cannot do. Also they are probably in constant fear of getting bawled out by whichever consultant they are attached to. It's a very hard life being a junior doctor and I have often thought that A&E should be the last place to finish their rotation on and not a year or so after they begin learning how to be a doctor. If I had a £1 for the number of times my collegues and myself told a junior doctor what he needed to do when treating a patient then our salary would have been much improved  A&E is a fast thinking, fast acting, hard working area to be placed in when you have sufficient knowledge but it is a nighmare place for a junior doctor with not enough senior staff on hand to help them and it is the poor patient that suffers in the end.

I understand that the secretary thought there would be no way you would get an earlier appointment but that is not for her to determine. If you cannot get her to ask the consultant then your GP needs to phone him and tell him how bad your illness has become and that you have already been rush into hospital once.

Good luck anyway. Fingers crossed

Hugs,

June