I was reading an article on another forum about this. I have Sjogren's and Hashi's.
If we have an autoimmune illness caused by our immune system attacking our body, isn't it counterproductive or even harmful to take supplements/vitamins etc that claim to 'boost' our immune system? Thereby making it attack our body even more forcefully? Don't we need to be dampening down our immune system rather than giving it a 'leg up' to cause even more problems? Can vitamins/supplements/herbals exacerbate the situation? Thoughts?
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tracyd59
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Dr Thomas - The Lupus Encyclopaedia- has a list of supplements to avoid with Lupus for that very reason. Things like echinacea will stimulate our immune systems too much. However he recommends vitamin D. When I was low in vitamin D I felt awful. I also take vitamin C to boost iron absorption.
autoimmune reactions can be very specific responses to particular sets of biological events. so a blanket ban would be overkill. many may have been genetically mapped but not everyone has had genes mapped. whilst having one autoimmune response makes it more likely you will have others it certainly doesn't mean you will have all. they are not all triggered by supplements and some even impact on ability to absorb nutrients including vitamins and minerals so treatment requires supplementation.
certainly wouldn't condone supplementation just for the sake of it though - medical advice or at least thoroughly research before hand.
Unfortunately medical advice from GPS is pretty useless as most of us have experienced. However I have RA and echinacea is to be avoided. It is rather difficult to know which supplements to avoid when one has specific health issues.
medical advice doesn't necessarily mean speaking to GP - in most cases I suspect that speaking to a pharmacist is probably going to get a better quality answer than speaking to a GP
My understanding is that we want to boost the immune system but in the right way and therefore immunomodulatory substances are advised as they improve the immune system and help it learn what's harmful and what should be left alone
Thanks, wow this is interesting, but hard. My homework
Head's a bit fuggy from a cold... need to do a Sunday Roast...
I'm currently intrigued by the Edge Effect approach to supplementation - I'm definitely acetylcholine with a bit of dopamine... I wonder how any of this ties up with immunity?
I too found it hard to take in. Am wondering even if you are TH1 dominant ( I am ! ) - then if the TH2 is balanced then we should be OK Not sure that makes sense !
hiya, No, I'm from UK but live in Australia and got SS and Hashi's diagnosed in 2005. Hashi's via a blood test as I was exhausted, weight gain etc and SS via salivary gland biopsy which confirmed Primary Sjögren's Syndrome. SS manifested in dry mouth not relieved by drinking large amounts of water and also some mild kidney involvement as a result of microscopic traces of blood in my urine. I also get a bright red swollen throbbing nose and bone dry nasal passages when having a flare up. I look like I'm wearing a Comic Relief Red Nose when that happens! Saw a renal consultant and he said he suspected SS which was subsequently proven correct via the salivary gland biopsy carried out by a dental surgeon under local anaesthetic. Fun and games all the way!
Tracy I have an identical combination to you and exactly the same symptoms - diagnosed in exactly the same way! I also have Raynauds and eczema plus GI issues from top to bottom. I was previously misdiagnosed with RA and treated with aggressive DMARD combinations for this.
I'm on Mycophenolate Mofetil (MMF)now and not sure if it's making any difference but it is the first drug I've tolerated and, like you, I have early stage kidney involvement plus some type of Vasculitis so I decided to give it a go. Being tested next month for secondary Raynauds and will make a decision about whether to continue on a powerful immunesuppressant after five months of taking it.
I have found it best just to suit myself re diet and supplements. I'm prescribed AdCalD3 which was life changing when I started it 3 years ago and- may try extra D3 if I find my level is still low.
I take B12 sublingually but haven't found it helps and my levels have always been good to date. I did take a suppliment called Taurine for a while as my husband swears by it. I started taking it after advice on a neuropathy forum when I was struggling with tinnitus - but I still have severe and constant tinnitus although it unexpectedly helped with my IBS-c! I stopped taking supplements apart from AdCal D3 once I started on MMF because I decided I needed to chart my progress with one pill at a time. Hate taking pills as on 14 daily just now and swallowing is hard.
Did try Acidophilus for six months but make do difference. Had some kefir a month ago and was very sick for 4 days so not good to take with immunesuppression I learnt the hard way.
Basically I stick to a very well balanced, wholesome wheat and milk free diet with plenty of leafy veg and some fruit. Nothing is completely eliminated but nothing is consumed in excess. I don't have any real food intolerances but cows milk makes me feel sick if I drink much of it so I stick to soya or almond milk. Hope this helps.
I defintely lack the willpower to stick rigidly to any one diet such as AIP. Life is hard and exhausting enough!
I also get a bright red swollen throbbing nose and bone dry nasal passages when having a flare up.
I have this problem but have never sought a diagnosis for it. I have dry mouth, dry & itchy eyes, dry & itchy nose, and dry & itchy ears. I've often wondered if I have Sjogren's Syndrome.
Having said that, I've also been recommended coconut oil which I intend to try next, and I've also decided to try aloe vera gel which is one of the ingredients in the Nasogel.
I also thought that I might have SS as had all the symptoms, and as most medicines make me feel awful, (have Hashi,Celiac), I tried probiotics,(14 strains BioKult from Boots in UK), swilling the powder around my mouth with a little water instead of swallowing the capsules and it seems to have worked as the symptoms disappeared, I still get dry nasal passages but the jaw ache and swelling went.
I have read that all auto-immune conditions benefit from a gluten-free diet, and it certainly helped me, my IBS symptoms,migraines and muscle pains plus other problems disappeared after a few days on a GF diet, I haven't had a biopsy for celiac but after a time on the diet I mistakenly ate something with gluten and had a nasty case of Dermatitis Herpetiformis and am now considered Celiac by my doctors. I also have skin problems due to candida overgrowth and so avoid sugar,(fructose seems to cause the most problems), I also eat low carb which suits me very well, and I take a special immunity multivit and also extra vit C, B(various),D3 and starflower and Evening primrose oil caps, and use coconut oil and aloevera gel for lots of things. Everyone is different, I just tried different things till I felt better, as I understand it, its not so much having to suppress the thyroid more trying to get it to work properly.
If you're taking selenium please make sure to get your selenium blood levels regularly tested, some people are very sensitive and even small doses can cause selenium toxicity (happened to me in just 2 months of 200mcg per day). Toxicity symptoms are very similar to hypothyroidism, hair loss, foggy memory, etc.
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