Sarcoidosis - not enough care and attention given to sufferers

DI, Sorry to hear that you have the chronic form of Sarcoid, it seems I have got off light.

I note you mention Harefield hospital , I am under charing cross, although I had my intial biopsy in St Marys and then the the more intrusive with a 2 night stay in Hammersmith Hopsital which no doubt you are familiar with. I have had vey good treatment thankfully.

JUNE, It is so frustrating that doctors dismiss people opinions when they have experienced all the symptons first hand.

With regards to us all getting the simialr symptons at the same time this is what I mentioned previously so there is definitley a pattern with us all.

MORAG, Long before I was actually diagnosed my GP called me after a blood test and told me to take 1000mg of vitamin D a day.

Each time I go to the hopsital my calcium levels are bing checked.

JUNE,

Great minds it seems we were both typing a post at the same time.

I dont put salt in my cooking and very rarely put salt on my food, as for fat etc I dont eat butter, spreads cream or milk so am unable to comment.

With regards to avoiding sunshine, this is quite suprising to hear as previously mentioned in above post my GP put me on Vit D capsules as my levels was so low.

Maybe I should say a bit about the parathyroid to in case anyone wants to know;

The thyroid gland regulates the body’s metabolism and has no effect on calcium levels while parathyroid glands regulate calcium levels and have no effect on metabolism. Calcium is the element that allows the normal conduction of electrical currents along nerves--its how our nervous system works and how one nerve 'talks' to the next. Our entire brain works by fluxes of calcium into and out of the nerve cells. Calcium is also the primary element which causes muscles to contract. So you can understand how too much calcium would cause all sorts of horrible side effects to occur.

Too high a calcium level can make a person feel run down, cause them to sleep poorly, make them more irritable than usual, and even cause a decrease in memory. In fact, the most common symptoms for patients with parathyroid disease are related to the brain, and include depression and lack of energy.

I remember being told by one GP that I had high calcium levels but she put it down to the fact I'd had bone surgery so nothing was done to correct it! Just as well I'm on steroids now!

Hi Linda. I wonder if only some Sarcoidosis sufferers get hypercalcaemia, rather like we don't all have the same symptoms. I know I had very low Vitamin D years ago because I developed osteoporosis but I don't know what the level is like now. Just that it was raised about 3 years ago.

Just make sure your GP is checking your bloods for serum calcium levels when he takes your blood for other tests. The last thing you need is to take vitamin D if your calcium is raised.

We always seem to be on the forum at the same time ha ha!

JUNE Another great piece of information. Thanks

Hi June, we are truly bouncing back off of each other today.

Yes my calcium levels are checked at each blood test at the hosptal. I havent taken VIT D for a while now.

I havent actaully been back to my GP for about 10 months now since \i was under the hospital.

But I really should as I also stopped taking the blood pressure tablets [as I ran out] he put me on them when all my symptons started.

My pleasure ha ha! To be honest I know how frustrating it is to have half a story and be baffled with the medical terminology so I like to try and make it more understandable because things are scary enough when you have any disease without letting our minds worry us further because of lack of information.

Does that make sense????

I think also we are scared to ask our GPs to explain things etc because the time we get with them is short and because we don't like to appear ignorant either and end up thinking that we should know what he is going on about. I firmly believe that a nurse should be present whenever we visit the GP and she should escort you out and ask if there is anything you want explained. I'm sure people's illness would be far less daunting if this was put in place.

Ooooh naughty girl. Although I get why you haven't been back and at least the hospital are keeping an eye on you....yes?

It wouldn't do any harm just to make a general appointment so that both you and he are kept in the loop as it were. Often the hospital will write letters that you are not aware of after your hospital appointment and it could be that they decided something after you left them and they just assume your GP will update you but if you are not having the odd appointment at your GP's then information and or treatment doesn't get passed on.

You see where I'm going with this...yes?

Hi all,

I hope you are enjoying your weekend. I'm afraid this is another long reply.

On calcium: the rheumatologist I had been because I have significant osteoporosis in my lumbar spine, plus some osteopenia in my hips, seeing wanted me to take calcium, but the doctors at the Royal Brompton said they didn't recommend it. I was actually surprised she had suggested it because once when I went for my annual appointment I was seen by a nurse practitioner rather the a doctor, and she freaked when she was my blood test results which showed more or less zero Vitamin D. She rushed off to get the consultant who explained to her that Sarcoidosis patients make Vitamin D extra-renally in their lungs, and that type of Vitamin D doesn't register on standard blood tests. The biochemistry involved is complex and I don't really understand it, but it do know it mean it is risky for sarc patients to take calcium as they can easily get hypercalcaemia, and in no circumstances should you take extra Vitamin D.

On salt: I also cook without salt. After many years on steroids my skin is thin inside my mouth as well as generally. I now have to avoid sharp, crunchy foods as I find these cut me and I can suffer from haemorragic blisters, probably because of the methotrexate.

Oral thrush: I have problems with oral thrush whenever I get put on powder inhalers rather than the pressurised ones. I use a spacer with the inhaler, which helps, and I've got in the habit of not only gargling but also brushing my tongue and the roof of my mouth as well as teeth with my Oral B. last time I got thrush, I put Daktarin on a non electric toothbrush and used it to apply it the sticky cream - I can't think of a word to describe it - and that did clear it.

Finally, Linda, I'm under both the Royal Brompton and the Hammersmith. This was the RBH's decision. I had problems with haemoptysis is 2013, which culminated in my having a really serious, life threading lung bleed and having to call an ambulance and an emergency admission to UCLH - this is a summary of long story - and as a result I had an angioplasty and embolisation done by the interventional radiologist at Hammersmith, where they have advanced medical imaging. It's a procedure where you're awake while they pass a camera through your artery and into the lung where the doctor sealed off the damaged, leaking blood vessels. It has worked well and I am much better. I can still have a problem if I over stretch my lung by carrying heavy weights or trying to make bread or mix a heavy fruit cake, as I discovered this Christmas.

As for a time scale for chronic sarc, I haven't come across 10 years as a suggested time limit. As I understood it from what I have been told, there's no cure although it is treatable, and the prognosis is hugely variable as it entirely depends on the course of the disease in each individual. I am going for my six monthly check at the Hammersmith on Monday, so I will ask if this is right.

Hi Di. My goodness you certainly have been put through the mixer, haven't you? I'm so sorry to hear about the haemoptysis but I'm relieved to hear that the angioplasty and embolization worked. I hope you are taking great care of yourself and I hope you have support and help at home especially when you are feeling more unwell than usual.

I would like to say to other sarcoidosis sufferers that what you have been through is rare and that you have the most severe chronic sarcoidosis that someone can get. While Sarcoidosis is a multi-symptom disease, it is rare for someone to suffer as much as you have and I don't want anyone to think that their sarcoidosis is going to develop in the same way as yours has.

Some sarcoid sufferers will never even realise that they have the disease, while others may be plagued with symptoms for a very long time.

No one knows how the disease takes hold and there is no cure at present just treatment for the individual symptoms. Doctors seem to like to attach a time limit to diseases so that is probably why the 10 year total has been talked about.

Sarcoidosis seems to be as individual as the people it attacks in as much as each person has a varying list of symptoms and acuteness of the disease.

An acute attack is one that attacks the person (whether they are aware or not) and then disappears again. Mostly acute cases are left untreated as they do not carry the same fear of damage to organs etc as a chronic case does.

Chronic Sarcoidosis is usually severe in symptoms and goes on causing problems for a long time usually years. In this time there can be remission periods although it can also remain in an active phase for several years too.

People who have chronic sarcoidosis who have not been diagnosed early enough and therefore have not received the treatment they needed are the unlucky ones who can end up with permanent organ damage. Some may even require heart/lung transplants.

However I must impress upon all of you that this is very rare and the fact that you are all receiving treatment or are at least being monitored on a regular basis your sarcoidosis will not advance to this stage or to the stage that Di is unfortunately at.

Vitamin D helps you absorb calcium so if you already have high calcium then it's the last thing you need but not everyone who has sarcoidosis gets hypercalcaemia or has any problem with their calcium absorption.

I also want to explain about the vitamin D being made outwith the norm because your nurse practitioner seems to have got a little confused and given you misinformation.(unless I am misunderstanding what you are saying which knowing me is very possible and I apologise if I've misunderstood you). I just want to try and clarify it for everyone in the forum if that is okay and I mean no disrespect to you for doing this so again I apologise if I overstep the mark.

First of all the lungs do not make vitamin D. The nurse may have meant that the granulomas within the lungs were causing the increased production of vitamin D. Although it is the parathyroid that regulates calcium levels so I'm confused as to what she meant by that statement.

Vitamin D is not one chemical but many. The natural type is produced in the skin from a universally present form of cholesterol, 7-dehydrocholesterol. Sunlight is the key: Its ultraviolet B (UVB) energy converts the precursor to vitamin D3. In contrast, most dietary supplements are manufactured by exposing a plant sterol to ultraviolet energy, thus producing vitamin D2. Because their function is almost identical, D2 and D3 are lumped together under the name vitamin D — but neither will function until the body works its magic. - The sun’s energy turns a chemical in your skin into vitamin D3. It then goes to the liver, where vitamin D picks up extra oxygen and hydrogen molecules to become 25-hydroxyvitamin D. This is the chemical that doctors should measure to diagnose vitamin D deficiencies. But although it is used for diagnosis, it can’t function until it travels to the kidney. There it acquires a final pair of oxygen and hydrogen molecules to become 1,25 dihydroxyvitamin D, or calcitriol,

Bioactive vitamin D or calcitriol is a steroid hormone that has long been known for its important role in regulating body levels of calcium and phosphorus, and in mineralization of bone. More recently, it has become clear that receptors for vitamin D are present in a wide variety of cells, and that this hormone has biologic effects which extend far beyond control of mineral metabolism.

Sarcoidosis causes granulomas to form in various parts of the body (mostly starting in the lungs and chest)

Granulomas is an inflammation found in many diseases. It is a collection of immune cells known as macrophages.

Granulomas form when the immune system attempts to wall off substances that it perceives as foreign but is unable to eliminate.

Sarcoidosis frequently causes a dysregulation of vitamin D production with an increase in extrarenal (outside the kidney) production.

Macrophages inside the granulomas convert vitamin D to its active form, resulting in elevated levels of the hormone, dihydroxyvitamin D and symptoms of hypervitaminosis D that may include fatigue, lack of strength or energy, irritability, metallic taste, temporary memory loss or cognitive problems.

Excess calcium can be detected in the urine and serum blood. Also blood tests for serum PTH the hormone made by the parathyroid glands and serum PTHrP which is a protein related to the PTH hormone and serum vitamin D levels.

I hope I haven't confused people further but I think it is important to try and understand what the disease is capable of doing and how it does it because it can not only allay fears but can help you understand the need to go to your GP and not leave things on the back burner hoping they will get better on their own!

Thanks for the explanation June, I did say I didn't understand the biochemistry. Actually it was the rheumatology consultant who came in when called by the nurse who talked about extra renal Vitamin D production, but I may have misheard or misremembered the bit about the lungs. I did meet a man with Sarcoidosis at the respiratory clinic at that hospital, which I won't name, who had been given Vitamin D by some doctor and he said it had caused his kidneys to fail which resulted in an emergency admission and 10 days in hospital.

I typed the year wrong, it was November 2012 when I had the embolisation.

I'm actually OK at the moment. I took redundancy from my main teaching job this summer and six months of not working has really helped. The drugs are keeping the sarc in stasis, I hope. The damage to my lungs has been done but the rehab course has helped. I'm due to have a lung function test on Monday and I'm reasonably hopeful there may be some improvement. As the Harefield physios explained, you need to keep fit if you have lung disease. The temptation is not to keep moving around because it has become more difficult, but that means you lose fitness and moving around becomes even harder - a classic vicious circle.

Thanks Di. I was just hoping that I hadn't upset you by putting the explanation up. I've a bad habit of putting my mouth in gear before my brain and sometimes upset people when it is the last thing on my mind to do. I just want to try and keep everyone clued up in case they are embarrassed to ask and also to help them navigate the confusing world of medicine.

I feel so sorry for you having to give up so much because of this horrible disease. I do think you did the right thing by taking redundancy though as your body cannot repair if it is constantly exhausted. The chronic fatigue is like no other tiredness I have ever experienced and I am in a wheelchair so have no reason to get tired. I can imagine how much worse it must be for everyone else. The constant sweating really gets me down and nose bleeds can be a pain too, especially if you can't grab a tissue in time!.

I didn't even realise I was so breathless until my physio pointed it out to me and begged me to go to my GP. At the time I was still dragging myself around on crutches so thought it was just down to the extreme effort of hauling myself around.

I think you are awesome to keep so positive and you are an inspiration to us all.

I hope your appointment goes well and I'm sure we will all be thinking of you on Monday.

June

Hello everyone, Hope you all had a good Christmas and New Year.

It seems that most of us are having multiple symptoms just now so its good to

have the information from you Ailsa June and the updates on treatment being

given to others. I also find it helpful for the solutions mentioned for some of the

symptoms that each of you are dealing with. Thanks for all of this information.

My GP and consultant do not seem to care really and I have to ask for

everything but rarely get any help with my symptoms. I feel I am viewed as a

nuisance because to quote my GP he says I look OK most of the time.

I also have problems with small blood spots, exudate in my tonsils, cysts on my

tonsils/not tonsillitis, swelling inside my lips which comes and goes and thrush

sometimes. I have a chronically enlarged parotid gland which gets infected

sometimes.

My sinuses are swollen, chronic swelling over the facial sinus areas and above my right eye, not due to steroids. My nose has been so congested inside now

and bleeds when I try to blow it / for 10 weeks now. I have tried steam

inhalations, steroids, olbas oil etc etc with no improvement.

I have two para thyroid cysts which I have previously had a bleed into.

My hair has thinned. Have almost lost my eyebrows, borderline thyroxine levels

I get eczema sometimes, have a rash quite a lot, looks like urticarial then leaves red/pink spots.

My lungs have scarring, bronchiectasis, collapsed area at base of left lung,

which causes stabbing pain and breathlessness / more than usual. It is a

gradual increase in symptoms. I cannot manage going upstairs without stopping at least twice.

I have a 6 year history of a fissure and chronic painful itch in my feminine area!!

My joints are painful and I slipped a disc almost 2 years ago which is still troublesome at times.

I have episodes of muscle cramps and twitching, it feels as if I am having a

seizure when at its worst but just usually cramp. I requested a calcium check

several years ago and it was very LOW as was my Potassium level. Equally I

believe it must have been high at times because I have had renal calculi twice.

I always test positive for blood and Leucocytes in my urine and have done for

about 15 years or so.

I run low grade temperatures for weeks on end usually about 37.5 which only

gets really high with a chest infection and then I also cough up blood and am

wheezy.

I had pericarditis with mild myocarditis years ago before diagnosis. I have a pan -systolic murmur of the mitral valve.

I am shocked at all the things I have listed here as it is difficult to view it in black and white.

I guess I just want everyone to know that they are not alone with their symptoms and not everyone gets everything going wrong with them.

I first had undiagnosed Sarcoidosis in 1979 and in 1985 for 18 months and I

recovered, so I thought. It reappeared in 1997 and I eventually was diagnosed in 1998. It then went into remission in 2000 with a homeopaths help and again

reappeared in 2006-2007 and has not let up since as damage occurred to my

lungs because I caught a Pseudomonis Aureginosa infection.

Well that my story, I wish I had medical support and treatment but to quote my

last consultant, " You've had ten years, your condition has deteriorated

markedly and as we are not doing anything for you I will dismiss you from the

clinic"

I was so shocked. I had a chest infection and pleurisy at that time and did not

even get examined!

After a year I got a re-referral to a new consultant but no real help either. I will

see him on the 24 th of this month I think if my appointment is not cancelled

again. It's a year since my last visit.

I am very sorry to unburden all of this I won't mention all of it again. Thanks

again to everyone, your problems and solutions are very helpful to me and I am grateful.

Best wishes for 2014, Love Helen

PS Sorry Don't know how it appeared so fragmented, H

Hi Helen, thank goodness someone has mentioned itching down below! I did think it might be another sarc 'present'! The systemic nature of the disease means it just gets you everywhere. And over time steroids cause almost as many problems as they cure.

Many doctors seem to lack both empathy and imagination, or maybe that's a defence mechanism - there's only so much human suffering a person can process. But I'm shocked that you were discharged with such harsh words - an admission of their total failure actually. Have you tried getting referred to Professor Wells at the Royal Brompton Hospital? He might take you because you are such an extreme case. The only time I saw the man himself rather than a registrar was when I had the serious lung bleed,