Autoimmune diseases: Hi everyone. Very... - Thyroid UK

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Autoimmune diseases

Yulia2010 profile image
96 Replies

Hi everyone.

Very interested in your opinion. I've heard that if someone has one autoimmune disease (i.e, Hashimoto like in my case), they can develop another one - or even more.

I want to understand how rare (or frequent) this is. Are there any cases on this forum with 2 or more autoimmune diseases. Many thanks for your replies.

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Marz profile image
Marz

I have Crohns and Hashimotos :-)

Yulia2010 profile image
Yulia2010 in reply to Marz

Sorry to hear this. My GP recently told me that one could develop Type I Diabetes, which apparently is also an autoimmune disease. I am terrified...

Marz profile image
Marz in reply to Yulia2010

Please do not be. I was diagnosed with Crohns when I was 27 - over 43 years ago. No drugs needed of late. Hashimotos diagnosed in 2005 - and at 71 thyroid hormones and supplements are all I take. Click onto my name above and take a couple of minutes to read about my journey :-)

Yulia2010 profile image
Yulia2010 in reply to Marz

I am so pleased for you. Thanks so much, looking forward to reading your story.

Marz profile image
Marz in reply to Yulia2010

Just click onto my name above - Marz - it will only take a couple of minutes. It is the Edited version :-)

Yulia2010 profile image
Yulia2010 in reply to Marz

I have read it. How wonderful and positive! Really happy for you. You must be very fit to teach yoga classes!

Marz profile image
Marz in reply to Yulia2010

Everyone is dealing with something in their bodies. Yoga is not a competition - it's about the journey rather than the destination 😊 Have you tried it ?

Yulia2010 profile image
Yulia2010 in reply to Marz

Yes - a while ago. I've got arthritis in my foot and it was good for it:)

in reply to Yulia2010

There are over fifty types of autoimmune disease and it is likely that you could be diabetic. There are over 200 different types of arthritis which are autoimmune diseases, so you could have a lot of worries if you were to imagine how many diseases are connected to hashimotos.

Vitiligo sometimes accompanies thyroid disease. If you have more than one type of autoimmune disease with symptoms of muscle aches, fatigues

pain in the joints or breathing problems it might be possible work out what is troubling you. Screening off any possible other conditions such as diabetes or asthma can be done by the nurse in you practice. This may not concern allergic

asthma.

Just phone for a blood test. If it is not either of these. then

there might be other common causes which are linked to Hashimotos such as gluten in the diet in wheat rye an barley. Other factors can be food intolerances which may damage the thyroid - fluoride, chlorine, lithium. Aluminium in pans and kettles chemicals and dyes in hairdressing preparations maybe allergens which may you ill.

If you want to keep away from doctors you could go to a Lloyds chemist which do.free diabetic tests. Viamin B deficiencies might be shown on the half moons on your hands, If a few on one hand but non on the end finger you might have a B12 deficiency

t3rcam profile image
t3rcam

I have hashi's and adrenal fatigue

judburke profile image
judburke

Hashi and Coeliac

shaws profile image
shawsAdministrator

Yes, I have three so far. First diagnosed was Pernicious Anaemia - discovered by chance.

About 20 years later diagnosed with hypothyroidism and have also had 4 bouts of alopecia.

Yulia2010 profile image
Yulia2010 in reply to shaws

Oh, so sorry to hear this, Shaws. I am also losing lots and lots of hair at the moment(( Used to think it's to do with iron levels but this time iron is fine plus I am taking iron and it's still happening.

shaws profile image
shawsAdministrator in reply to Yulia2010

I have become reconciled even though this time it has taken more than 18 months and still have some bald patches. Before it took about a year.

You don't feel quite the same when our hair is more off than 'on'.:)

Yulia2010 profile image
Yulia2010 in reply to shaws

Yes, I know what you mean...It's a shame but what can we do.

shaws profile image
shawsAdministrator in reply to Yulia2010

buy a reasonable wig :) .

mauschen profile image
mauschen in reply to Yulia2010

I got good results taking Biotin N, a mix of mainly vit B complexes

in reply to Yulia2010

You could try Regaine for women for hair loss. Regaine do the preparation for men as well. There are certain crucial vitamins which encourage hair growth, such as vitamin B12 and B9, in combination with other B vitamins such as 1 2 3 and 4.

Plums are said to help hair growth, and there are supplements in some health shops which help skin hair and nail growth. There must be a lot of foods which help with vitamins and minerals such as zinc potassium and iron. Don't give up!

spongecat profile image
spongecat

Hashi, lichen sclerosus and lichen planus and shocking gums and bone loss in jaw etc. which might be connected according to my dentist.... ......Maybe it's like collecting tokens?

sylus_911 profile image
sylus_911 in reply to spongecat

Hi Spongecat, thats interesting regarding gums and bone loss.I put on this forum a few months back asking about thrush on my tongue and a nasty taste.I was given gel,3 lots still did, nt go away then given Nystan, I, ve still got it so now im wondering wether there is a link, I, ve had this since I became unwell with Hashi,s.

Yulia2010 profile image
Yulia2010 in reply to sylus_911

I've also notice some strange taste in my mouth at times.

keeta profile image
keeta

Hi lovely .i have hashi.s lichen planus. And r/a. Didn.t know alopecia was one .had that too. Nearly a full house. Coukdn.t b that lucky at bingo .xx

Fruitandnutcase profile image
Fruitandnutcase

I've got Graves Disease, IBS, asthma, Dupuytren's Contracture which I've been told is autoimmune too. All my life - I'm 69 I've had a patch of vitiligo on my right forearm and I think that's autoimmune too - I've got a feeling I've missed one - I really do try to ignore them and get on with life - unfortunately it does kind of look like autoimmune conditions like to hang out with each other!

Nicolafisher profile image
Nicolafisher

Hi, I have heard this is the case. I have Hashimotos and feel awful everyday. I have started to read izabella Wentz Hashimotos Protocol and I'm going to try following it. She also confirms the link between autoimmune diseases in her book.

DrRebeccaChicot profile image
DrRebeccaChicot

I have Hashimoto's Thyroiditis and my daughter had autoimmune neutropenia and now coeliac disease. Lots of family have diseases too. Also all my babies IUGR which I believe was an autoimmune problem in me.

Hattie007 profile image
Hattie007

Hi. I have 3- autoimmune thyroiditis, coeliac disease and sarcoidosis. All diagnosed by the time I was 36. I try not to let it define me though. And as for being terrified- it was scarier when I didn't know what was wrong- once I was diagnosed it is now a matter of trying to learn as much as possible so I can just get on with life. 🙂

MCDW profile image
MCDW

I have had psoriasis from a very young age. Now newly diagnosed with Hashimoto's.

Yulia2010 profile image
Yulia2010 in reply to MCDW

I didn't realise psoriasis was also an autoimmune disease. Sorry to hear your news...

Clairewalker751 profile image
Clairewalker751

Asthma, eczema, IBS weird allergy flare ups and now hashimotos my eczema was very bad as a child then the asthma at 12 the IBS at 18 diagnosed Hashimotos this year now I'm on Meds, supplements and eat right 100% glutton free no processed dairy or soy I'm doing pretty well although have had to give up running which I loved :-(

Yulia2010 profile image
Yulia2010 in reply to Clairewalker751

Hi Clairewalker751, glad to hear you are doing well, we need some positive news here! Why did you have to give up running?

in reply to Clairewalker751

Have you given up wheat and barley as well? Evening primrose oilfrom health food shops is very good for eczema.(Vitamin F). A young girl I knew had it badly but in three month of taking the evening primrose it had disappeared. Her mum tried to get it on prescription and was lucky.

Clairewalker751 profile image
Clairewalker751 in reply to

Hi thanks for your reply, my skin is fine now get small patches now and then but very mild and manageable yes I avoid almost all grains now apart from occasionally gluten free oats

Clairewalker751 profile image
Clairewalker751

I'd been running for about 5 years but it was becoming more and more difficult I stopped for a.while after diagnosis to let my body recover and get used to the meds I've since tried 2 very short jigs and crashed for days after muscle pains and severe fatigue! I am taking another private blood test in 2 weeks then thinking of adding T3 in the hope that I can return to normal physical activities? I'm ok as long as I am quite sedentary I suspect if I push my body I burn up my T3 so feel rough for days I don't think I convert levo to T3 particularly well? My mum and my paternal aunt also have hashimotos and my dad has several autoimmune conditions diabetes and psoriasis. I miss being active I love running and would walk up Snowdon annually now I just walk my dog for 30-40 minutes a day which I feel fine on just can't go beyond that without developing muscle aches and fatigue :-(

Yulia2010 profile image
Yulia2010 in reply to Clairewalker751

Sorry to hear this. I also had to give up my fitness class because of arthritis in my foot. This was very sudden. I now realise everything must have been connected to an undiagnosed hypothyroidism. Have you started medication?

Clairewalker751 profile image
Clairewalker751 in reply to Yulia2010

Yes I started in February this year and thanks to this site have been very proactive in my recovery private bloods and persuading my GP to increase levo dose to 150 based on my T3 levels not my TSH I take selenium B12 B complex probiotic, cod liver oil, digestive enzymes Vit C have changed my diet and read lots! I'll izabella Wentz I've spent a fortune but felt dreadful before diagnosis felt like I was going mad! I still have rough days and still don't think I've fully cracked it but my antibodies are coming down and I function really well compared to six month ago oh and I've lost 17lb and have a healthy BMI again :-)

Yulia2010 profile image
Yulia2010 in reply to Clairewalker751

That's really great. Well done for bringing antibodies down. Keep up the good work!

in reply to Clairewalker751

That's bad luck about the walking and pain the legs. Have recently heard of a success story, when a person on this website went for a diabetes test, after several months of havering not wantng to bother the doctors as the symptoms of hashimotos had worsened for 18 months. The person could not communicate with the GP who said everything was ok.

Eventually the diabetic test was done locally at Lloyds chemist, for free and the results showed type 1 diabetes. Within days the person was in hospital and is now on the mend getting their life back.

Chateau profile image
Chateau

In January I was diagnosed with Miller Fisher syndrone, a type of Guillain-

Barre. Thankfully only eyes, mouth, and legs were involved. All those symptoms were gone by late March. While in a rehabilitation hospital,

it was noted that I had low thyroid and am presently on Levo, 50 mg.

I am always so itchy...all over. No relief except when sleeping.

Yulia2010 profile image
Yulia2010 in reply to Chateau

Sorry to hear this, hope you feel better soon.

in reply to Chateau

Hypo thyroid can give dry skin, but the itching is under the skin. This could be

due to the liver, but may also be linked to a vitamin B deficiency. It might be

a type of neuritis, which is linked to diabetes and hypo thyroid. May be

you should go back to the doctor to ask what could be causing the itching.

If you are eating something such as gluten in your diet, it might be something to do with this. Other hypo thyroid remove gluten in wheat flour and barley and remove soy and

certain vegetables such as cabbage broccoli kale, unless they are cooked, If

you loo k at chriskresser.com there is and interesting audio an visual commentary

on these foods which can give side effects and harm your thyroid. As I love home made coleslaw, this is a big disappointment. Gluten free diets work like magic for many hypo thyroid folk. A diabetes test might reassure you.

Tiredmum75 profile image
Tiredmum75

I have coeliacs and Graves

Gazebo profile image
Gazebo

It is very common. I have several autoimmune conditions and have been doing a lot of research into this very topic. One of my conditions (Stiff Person Syndrome) is very rare and I have to attend hospital 3 days per month for immunoglobulin therapy. The hospital is choc-a-bloc with people receiving the same treatment for various auto-immune conditions who also have a substrata of other autoimmune conditions.

Much of it may have to do with the tendency for modern medicine, especially in the West, to treat symptoms rather than look for root causes - so we might be issued with thyroid medication that might seem to keep the thyroid in check but, if the root cause is not tackled, it finds a way of popping up again in another guise.

I have found that those who practice functional medicine tend to join the dots and are keen to identify and tackle root causes. Unfortunately we have precious few of them in UK at the moment - although the numbers are growing. The BBC recently ran a series of programmes on one of them (Dr Rangan Chatterjee) called 'Doctor in the House'. Unfortunately, such approaches tend to be very time consuming - time being a commodity that GPs don't have a lot of.

There are many functional medicine doctors in the States. One of them has been particularly prolific in the field of teaching aspiring functional medicine practitioners and, if anyone wishes to check him out, there are many recordings of his classes available on Youtube. His name is Dr John Bergman and, if you key in a condition such as Hashimoto's/ Graves/ Addison's / Diabetes/ Rheumatism - or even simply 'autoimmune diseases' alongside his name plus 'Youtube', videos of his seminars will appear.

Isabella Wentz, of Hashimoto's fame, adopts a similar approach and, in fact, recently published a book called 'Hashimoto's Protocol' which is a programme that guides one through the steps for identifying the triggers that might be responsible for one's Hashimoto's (there are all sorts of triggers so each person can have different triggers). I think her approach on identifying and tackling the triggers for Hashimoto's could be easily adapted to help people with other autoimmune conditions too.

Yulia2010 profile image
Yulia2010 in reply to Gazebo

You're absolutely right, they don't try to look into root causes. We have to work things out for ourselves. Thanks for the information. I have read Isabella Wents' books but haven't heard of Dr John Bergman.

CS1964 profile image
CS1964 in reply to Gazebo

Hi I am new to this forum....i was diagnosed with hypothyroidism in June this year...my G.P said it was auto immune...later it became clear i was malnourished after a diagnosis of Coeliacs disease in August... I have also had diagnosis of Raynauds, perennial neuropathy and lichen sclerosis... all auto immune....so yes I’ll agree that having one auto immune condition can lead to others.

LynneG profile image
LynneG

Hi Alessio Fasano, Researcher - I think Harvard (Famous Guy in autoimmunity) identified 3 causes for autoimmunity, without all 3 you cannot develop. He discovered Zonulin, produced in tiny amounts in the body to open the tight junctions of the intestinal wall to enable absorption of nutrients thru the gut wall into the blood stream.

People with a leaky gut wall, that is the junctions open for too long/ too wide are found to have created too much zonulin.

Professor Fasano states that the 3 things reqd for autoimmune are a genetic component (the weak link in your chain (thyroid, heart, skin, liver, intestines, whatever)

A leaky gut which enables stuff to pass thru into blood stream that shouldn't

And a trigger, that creates the autoimmune response when it gets through into the blood stream.

I think the trigger can also be the thing that made the gut leaky eg a Wheat protein. or too large molecules of other food proteins, or bacteria or virus, yeast, fungus, the LPS (coating of gram negative bacteria - bacteria poo) Anything that can get through that shouldn't

Lots of things make the gut leaky - medications, antibiotics, birthcontrol pill, Wheat does in everyone, LPS, yeasts, vaccine contents, anaesthetics, Lectins contained in foods etc

If you have an unbalanced microbiome with too many organisms that are bad for you rather than good bacteria working for you. Certain strains of bacteria message the cellthat repair the gut wall/get it closed again - if you don't have those good bacterial strains. Your gut wall won't heal as the cells don't get the instruction.

So I think people will tend to get numerous autoimmune until the intestinal wall is no longer constantly permeable. And to ensure that you have to have a good microbial balance of your microbiome. As new triggers get through and the immune system is activated to target. Many proteins that get through that activate the immune system defence mechanism look similar to tissues of our organs and so that specific organ gets attacked by the immune system by mistaken identity. Wheat proteins are often similar to thyroid and brain cells (I think). Its called molecular mimicry. See Dr Tom O'Bryan's video interviews of prominent people working at the cutting edge of this field. It's called 'Betrayal'

Yulia2010 profile image
Yulia2010 in reply to LynneG

Thanks so much for the information, LynneG. A lot of interesting data. I have heard about gut permeability being the main issues with autoimmune diseases but never about Zonulin.

Kipsy profile image
Kipsy in reply to Yulia2010

Yulia2010 - I recently undertook various tests with Genova including their GI Total Effects and my nutritionist organised a zonulin test at same time. My zonulin levels were off the scale showing a very leaky gut indeed. (I had no inkling of this but now looking back it makes sense). I was only diagnosed with Hashis this year, with antibodies over 1000. Having gone Paleo (no grains so automatically gluten free and minimum dairy, no soy, no legumes) in May, I have reduced my antibodies by anout a third. My nutritionist warned me off grains unless 'I wanted the antibodies to go to my brain' I should have asked for more explanation and would love to know if one day I could return to a normal, albeit GF, diet. It's very very boring- especially eating out on holiday- and a pain in the neck for friends who invite us over but I'm sticking with it for now.

Along with Hashis, I had endometriosis (think it's autoimmune) in my 30's, giant papillary conjunctivitis, and have a few small patches of vitiligo so nothing too serious compared to some people but am keen to try to fight this battle!! Desperate not to develop other autoimmune diseases although my GP poo-pooed that idea when I asked.

I take thyroid meds (levo), supplements and various herbal things the nutritionist has me on to eradicate the parasites & SIBO etc- like Clairewalker751 its cost a fortune and my (healthy) friends think I'm mad. Husband very supportive as he also has Hashis although he refuses to go GF himself and thinks it's all nonsense 😩

Yulia2010 profile image
Yulia2010 in reply to Kipsy

Wow, well done for doing Paleo. I am thinking about it but haven't done it as yet.

Simba1992 profile image
Simba1992 in reply to Kipsy

AIP is good for reducing estrogen, but not long term if you want a diet that also supports thyroid function. This was my experience. Endometriosis tells about estrogen dominance in estrogen-progesterone balance and this puts your body in an inflammatory state. Like you I had great benefit at first of AIP then it backfired. My glucose metabolism was really in a bad way and my hypo symptoms increased.

Simba1992 profile image
Simba1992 in reply to Simba1992

Thoughts about a thyroid friendly diet.

butternutrition.com/low-thy...

LynneG profile image
LynneG in reply to Simba1992

Sorry to hear that Simba 1992. Do you mean that your glucose fell too low? Or did you get insulin resistance because you were having no sugar in foods? We know we have to have some carbs for thyroid particularly (see Chris Kresser website and Chris Masterjohn) Paleo doesn't have to be too low carb. You just make sure that you don't eat the bad for you carbs like refined grains and replace with non refined carbs like starchy carbs - sweet potatoes, squash, vegetable carbs that are good for your thyroid. Is that what you have now done? Sorry don't mean to pry but I had heard via the Chris's above that need to be aware of going too low. But also fasting for good health outcomes is now always talked of/ Dr Perlmutter, Dr Mercola and Uncle Tom Cobbley and all. So just wondered what your experience was. Hope you have sorted it now :)

Simba1992 profile image
Simba1992 in reply to LynneG

Thank you for your reply. I think the problem was that I did not get enough carbs, had too much protein and had a lot of raw vegetables that were infact influencing my thyroid function negatively. I was constantly hungry on this diet. It was evident that my glucose metabolism had problems. Too bad that I didn't listen to my body and let it really get messed up. I found Dr. Ray Peat a well known scientist and expert on thyroid function and on metabolism in general. He has really saved me through helping me understand why and how certain kinds of foods support normal thyroid function and glucose metabolism. Now I have been on his diet for about a month. My hypo symptoms have as good as disappeared and from being nearly anorectic am starting to look and feel normal again.

Simba1992 profile image
Simba1992 in reply to Simba1992

Here some reading that may interest you😊

functionalps.com/blog/2010/...

LynneG profile image
LynneG in reply to Simba1992

Interesting article - Thank you. Always good to have 360 degree view of a discussion/argument. My view of Paleo tho is it does not have to be really low carb.

Just cut the refined carbs like grains that do very little good and it seems a lot of harm re lectins such as WGA.

But with checking thyroid status/sleep status determine amount of carbs required. But healthy fruit and starchy veg carbs. such as potatoes, sweet potatoes, squash, bananas, Honey.

Still Paleo. Dependant on what digestion will cope with.

One thing that I didn't understand is the emphasis on the importance of carbon dioxide in metabolism. I think functional docs and Paleo totally agree.

But when saturated fat is burned for fuel the end product is carbon dioxide and water- hmm so how does that argument stand up?

Interesting :)

Simba1992 profile image
Simba1992 in reply to LynneG

Here's something Peat has written about co2.

raypeat.com/articles/articl...

LynneG profile image
LynneG in reply to Simba1992

Thanks Simba, v interesting Ray Peat article. I read a lot of Ray Peats work a couple of years ago. But there is so much to learn out there you forget and get sidetracked on another course. Altho I do like it (as would anyone lol) if what all those functional docs are saying/science is proving are all in agreement. And then we can follow a certain path. With tinkering for individuality but with the same basics principals

I am glad you are getting sorted now.

I am probably doing something wrong. I have Rheumatoid Arthritis (for 22yrs) so autoimmune. I have never taken meds preferring to learn and use diet and nutrition to control and heal. So my opinion is there is no challenging the Prof Fasano work - Leaky gut is key. And as I now have other symptoms started, rash (never had skin issues before and what seem like b12 deficiency symptoms. So then I certainly need to re evaluate and make some changes.

You say you were always hungry on the Paleo diet? Did you not incorporate eating the Paleo fats, butter/coconut oil/avocados/eggs because the fats keep you full. Just wondered why you were hungry? So you eat the meat and seafood the green veg, some starchy veg and some fruit.

So you are just getting rid of the breads, cakes, pastries, polyunsaturated oils. I also don't eat any grain including rice or corn (as grains and not adviseable if have autoimmune)

I am now going to cut higher lectin foods, which can make the gut leaky (as per Heart transplant /open heart surgeon Dr Gundry) as I feel my gut must have become leaky again to now have this rash and the other symptoms)

But I know my TSH is climbing over last few yrs and is now 3. And don't want to be doing anything detremental to thyroid health. I want to be bringing my TSH down. And I know carbs are necessary. And as per your article carbondioxide and controlled belly breathing, to retain carbon dioxide.

What I couldn't understand is why burning saturated fat would be detremental because the burning of saturated fat for energy actually produces carbon dioxide and water, so a good thing surely? I didn't therefore understand the previous article's argument on saturated fat burning as a reason to eat lots of carbohydrate.

I thought as with Paleo you should eat carbs just not the wheats and other grains and sugars.

My diet is a bulletproof cocoa drink with grass fed butter and coconut oil (for cocoa polyphenols/fibre for feeding gut bact and brain, Butter - butyrate and coconut oil, keeps full for hours) Try to eat in 8hr time frame - intermittent fasting) Then say an egg, home made almond flour breadcake with olive oil, and berries with honey or melted 85% choc. maybe a banana as a snack - don't need snack but think ought to have a banana for carbs. And eve meal with protein veg or salad and sweet potato. I also have great lakes gelatin. And sometimes homemade veg soup at lunch instead of egg.

Can you tell me from your experience of now feeling better with moving from some form of Paleo to Ray Peat. Whether I am eating enough carbs for thyroid. Would really appreciate :)

Simba1992 profile image
Simba1992 in reply to LynneG

Thank you for your reply LynneG, I think what happened in my case that I was on the elimination diet too long and that I did not understand that in order for the protien and fat to metabolize you always need the carbs alongside. It may also be that I already had subclinical hypothyroidism and estrogen dominance so the diet made me sicker. Like you I have RA diagnosed 2015. I am not on any meds. Ray Peats diet with aspirin included has helped me to drop NSAIDs all together and my body temp has normalized as well as my pulse.

In your situation to check your thyroids by taking morning temp and pulse, would be the first thing I would do. Getting your basal metabolic rate optimal is the key. In RA on top of this you probably, like most of us, have food sensitivities and these are taken care of just by trial and error. I hope I can tolerate dairy step by step now when my metabolism is in a better place.

So glad to hear that you have managed without the toxic RA meds for such a long. time. I hope you haven't had a lot of bone erosion. All the best.😊Simba

LynneG profile image
LynneG in reply to Simba1992

Thanks for your support Simba. Yes I used to take my early morning temp but stressed me as could never get to 37c usually 36. My heart rate/pulse I know when take BP occasionally - all variable. I know cardiologist Dr William Davis (book:Wheatbelly) states he likes to see in low 60's and to monitor if rising towards 70. Mine usually in mid 60's occasionally in 70's if just climbed stairs etc.

Before the internet and all info and time to search, I really knew nothing re health. Relied on GP's and basically did me no good at all, no onder I ended up with RA. loads of antibiotics etc. I even mentioned Leaky Gut/intestinal permeability to my GP and Rheumatologist having read a book about. This was 22 yrs ago and was laughed at by both.

But just before my rheumatologist (Professor and head of the dept, who I had seen all that time) retired she talked to me of a gastroenterologist in the hospital of who she wished I could talk to as he thought as I did and believed in Leaky Gut and that infact there was evidence now that it was a real phenomenon and causal. I hadn't mentioned Leaky gut for 22yrs but she had remembered. She retired and then was replaced by the modern rheumatologists coming through. Head of dept, he said to me that his job was to manage people on medication and seeing as I wouldn't take any he saw no point in seeing me.

At least my previous rheumatologist took an interest in my case and what I was doing.

Before I had time or the access to the internet info I did have bone on bone wear of my ankle joint and after 2 yrs of suffering did have an ankle fusion (sub Taylor joint) fabulous - never felt a moments pain since the op and can walk anywhere again. Althoug I do believe the ankle issue was cause by orthotics I was made to wear in my shoes re toe joint, fallen arch RA damage just below my toes. They diagnosed me from the joint damage as never found RA factor. Te orthotist in his wisdom decided to correct my walk as well as support toe joints with orthotics. I had walked no doubt like that all my life, wearing the outside corner of my shoe heel down. His correction (if only he had left well alone) obv caused undue strain on my ankle joint and the eventual wear poss attracting the RA inflammation and erosion. Because it was not used to the correction and undue pressure.

Hey Ho.

I had stopped wearing after a few wks as could feel making ankle painful but was bullied into wearing, being told that i would be in a wheelchair if didn't wear. Undoubtedly I needed suport for my toe joints but the rest should have been left well alone. Never act in trust. You know your own body best.

I had a really inflamed wrist joint, it was just a lump at the end of my arm that was huge, could hardly use and needed protection from any slight touch. But with the implimentation of diet and supplements , my wrist bone is back to normal size, I have a few fingers and thumb that swell etc. I owe the restoraton of my wrist bone to Serrapeptase- which I take every day.

Yes I have cut a lot of foods - all organic, only well raised grass fed, free range, outdoor reared animals. No grains whatsoever, no sugar - really tiny bit in 85% choc. I do have some honey, honey comb from bee keeper tho preferring to believe how good it is for you and full of minerals. No dairy except A2 butter. and have cut out nightshades except for potatoes and tomatoes but having heardDr Gundry (new book - Plant Paradox) and high lectin foods causing leaky gut. I have just last week cut potatoes and tomatoes too. Having only sweet potatoes and learning about the higher lectin foods. as have started with a very itchy stinging pore size blister rash. having never had skin issues.

So all a work in progress.

Did you get your temp up with eating more and more carbs? :)

Simba1992 profile image
Simba1992 in reply to LynneG

Glad to hear that diet has worked for you. Yes I have gotten my temp up. No more cold hands or nose. In the beginning of the diet my pulse was very high but now quite optimal and I really believe the glucose increase in the diet together with progesterone and aspirin made the difference. Getting your basal rate up really means to take glucose ( orange juice fruits) every time you feel hungry so that the stress reaction with compensarory cortisol won't be triggered.

The most reliable way to diagnose hypothyroidism is low body temperature and high cholesterol. Low metabolic basal rate seems to always tell about thyroid dysfunction.

Are you CCP possitive ? Yes it's terrible with these rheumies that are only willing to help you if you are on meds, until they stop working 😡 Then you are left alone with all the damage the meds have done.

LynneG profile image
LynneG in reply to Simba1992

Thanks Simba, so when you feel hungry you have an orange/juice before you have your meal. Or is this juice to be taken inbetween meals? Problem tho I feel orange/grapefruit are 2 fruits that I should exclude. I do try to keep introducing but def makes rash worse.

I suppose any sweet fruit may work the same, I wonder if a spoon of honey would work.

Thats helpful re hypothyroid

My cholesterol is ok though, low LDL, low trig and high HDL..

I started with burning mouth and burning hands and feet which I was putting down to B12 deficiency (poss Lupus) so I don't get the cold hands and feet at the moment. But something is awry.

What is the aspirin supposed to do? That worries me as don't take anything no painkillers/ NSAIDS. Just some supplements.

I was ill with a virus/bact? immediately before I started with RA and the first question asked was 'have you recently been ill' apparently many have. But they don't try to find /eliminate the bacteria. Or didn't then. Just want to supress your immune system which I was having non of.

Now I have learned that the bacteria prevatella is often connected with RA and is often found high in the bladder and so connected to patients who have a lot of bladder infections - which I did.

If the body feels under threat of infection due to recognising bacterial threat or prescence of high inflammation then often the hormone hepcidin is created to keep iron in storage as ferritin. Stereotypical I have high ferritin 139 last measured (shouldnt be above 100 ideally 75) and low serum iron. The body is keeping iron in storage as a defence because micro organisms/bacteria feed on iron. Anaemia of Inflammation. Not that GP has a clue.

Paul Jaminet - Perfect Health Diet, and many other functional docs these days feel that it is best to fast/eat in an 8hr period so we starve the organisms instead of continually feeding them.

One funct doc talked of when he was a junior doctor and assigned to the Rheumatology wards he noted that the patients were always far better inflammation /joint wise when ill and couldn't eat. That the best treatment was starvation but obviously that couldn't be the course of action. But he felt diet played a huge role. But was not allowed to investigate in mainstream as he was then.

However eating in only an 8hr period with the intention of starving the bacteria may be an issue with thyroid and I wonder if that is why my TSH is climbing now ?

LynneG profile image
LynneG in reply to LynneG

Sorry, no idea about CCP antibodies. Never ever mentioned. I think I pre date that test. Next time at the GP's I will ask if ever tested for. I have had copies of my test results for years tho. And never heard mentioned either. So I suppose not tested. I am no longer under Rheumatology as Consultant discharged me to GP care with face on because I wouldn't take drugs. Shocking indightment of the NHS. The biggest drug pusher out there :(

Simba1992 profile image
Simba1992 in reply to LynneG

The CCP really is the most reliable antibody test on RA. If you have it you are seropositive and comined with other typical symptoms a more reliable diagnosis of RA can be made. The seronegatives seem to be better off concerning the aggressiveness of RA and also joint destruction. Meds do not work as well eather.

LynneG profile image
LynneG in reply to LynneG

Hi Simba, Just had GP app. Yes have CCP antibodies. He was shocked nobody had bothered to tell me - there you go.

I may be being over optimistic here but no. Positive mindset rules!

If seropositive, not doing bad for 22 yrs /no drugs. Hope that will give people hope for what we can do with nutrition /supplements and lifestyle :)

Simba1992 profile image
Simba1992 in reply to LynneG

raypeatforum.com/community/...

If RA is a metabolic disease closely connected to glucose metabolism then starvation and fasting actually only a momentary relief. Starving the body on glucose you are also starving cell respiration and the mithocondria that in RA are already dysfunctional.

Grape juice is not recommended in Peat diet. I think other juices are also ok.

If your THS is climbing then something is not ok, I would imagine.

Simba1992 profile image
Simba1992 in reply to Simba1992

Here is a informative interview where Peat also talks about fasting.

thyroid-info.com/articles/r...

LynneG profile image
LynneG in reply to Simba1992

Thanks Simba for Ray Peat article. Looking fwd to reading and looking for an approach that also fits with Functional approach. Please see link posted above :)

LynneG profile image
LynneG in reply to Simba1992

Here is a link Simba- neurology conference video but Functional Doctors/Functional Forum. These guys are cutting edge top of their field. I hope Yulia10 you will watch as agreat introduction to what functional doctors are about /lots of tips and most of all hope :) functionalforum.com/evoluti...

Yulia2010 profile image
Yulia2010 in reply to LynneG

Many thanks, LynneG! I most certainly will!

Yulia2010 profile image
Yulia2010 in reply to Simba1992

Wow! Great! This sounds hopeful for all of us. What is the principle of the diet you are following now?

Simba1992 profile image
Simba1992 in reply to Yulia2010

Here is quite a good review of Peat diet. I also take aspirine to help getting up my metabolic basal rate. Peat also writes a lot about the benefits of aspirin.

raypeatforum.com/community/...

Yulia2010 profile image
Yulia2010 in reply to Simba1992

Many thanks for the information, Simba1992!

LynneG profile image
LynneG in reply to Yulia2010

Hi Yulia, Interesting info re leaky gut ans autoimmune - interview, on genetic summit interviews right now. If you want to listen and have missed (only aired 24hrs) but always on these summits they do an encore day wher broadcast again. You want to listen to Dr Tom O'Bryan's interview on autoimmune if interested

geneticssummit.com/expert/t...

Simba1992 profile image
Simba1992 in reply to Simba1992

And about the benefits of aspirin.

functionalps.com/blog/2011/...

LynneG profile image
LynneG in reply to Kipsy

Hi Kipsy, hey thanks for info that there is a zonulin test out there now - v interesting. Are you in the UK?

Yes, endometriosis is autoimmune.

I love my Food - I feel good that the food that I am eating is great for me.

I had to make a cake for some do or other yrs ago (have been sugar/ gluten/then all grain free, for 6 yrs) and I couldn't believe how much sugar was in the recipe, I had forgotten, as I used to make such cakes all the time - (and the flour digests straight to sugar) Yuk.

I literally sit with family and friends while they tuck into cakes and deserts and am not at all envious (I actually feel sorry for them) But that all comes with the knowledge of what the stuff is doing to everybody.

I actually gave up sugar first because from being a teenager suffered with cystitis, thrush antibiotic cycle. And yeast/fungus - the thrush bit, feeds on sugar. I had no idea then that grains digested rapidly to sugar too, causing an acidic environment and loads of sugar for my out of control yeast population to feed on. The antibiotics for the cystitis having decimated my beneficial bacteria which would if hadn't been killed off, kept the yeasts in check and prevented them from thriving, overgrowing and exploiting.

Organisms like yeast will grow through the gut wall causing it to be leaky. A decimated microbiome with bad bacteria and LPS also breaking down the gut wall - well there is no wonder I developed autoimmune is there!

So cutting out all grains is cutting out most of your sugar. Not because sugar is in most recipes which include grains but because grains are sugar. The bit of added sugar on a teasp is nothing its all the grains people eat.

If i bake it is with almond flour, chestnut or coconut flour. I make my christmas cake and christmas puddings with almond flour and nobody can tell the difference - and replace sugar with a bit of honey. The wheat flour can be replaced by almond flour in any recipe, not that I do that often. Chestnut flour is good for making dumplings in stew tho with grass fed A2 butter or coconut oil and chestnut flour

My saviour is dark chocolate - with not having sugar, everything tastes too sweet so I have to have a piece of dark chocolate when eating a banana. I have 85% or 90% cocoa (they now know how good for you, as cocoa feeds your good gut bacteria)

Lovely desert is to melt a few pieces of 85% choc and stir in berries or any fruit, apple, pineapple tastes delicious. We had loads of gooseberries. They were brilliant mixed into the melted chocolate - looked like eating maltesers :)

I do make own bread cakes with almond flour, 5 at a time so a weeks worth and warm up for a few mins if having one. Literally take 5 mins to make and most of that is weighing out (no yeast). You just spoon the mixture of ingredients onto a baking tray. No messing. unbelievable. They they take 50 mins in oven tho but who cares. They rise so brilliantly, best breadcakes ever - who wants the crappy stuff. I tend to use them to dip in olive oil. Or butter and fruit jam which is so sweet (just fruit and grape juice) who wants a piece of cake or a biscuit when can have a homemade bread roll with blueberry jam and guernsey bright yellow butter.

I don't know if you eat potatoes but Paul Jaminet the author of the 'perfect health diet' said to put butter and cider vinegar on jacket potatoes as they taste just like chips. And they do :)

However I have been listening to Dr Gundry Cardiologist and famous baby heart transplant surgeon - new book out 'Plant Paradox' where he blames other high lectin foods inc grains foods, for creating leaky gut and so all the chronic diseases inc heart disease.

So if having trouble getting your leaky gut markers down consider his book with lists of foods that are high in lectins to avoid. Or for a start remove nightshades as well as grains because they are the highest in lectins.

I presume my gut is still leaky because I now suddenly have a bad rash and so have just cut potatoes and tomatoes out (all other nightshades I cut out long ago) You can have sweet potatoes though as not a nightshade.

Watch video of Dave Asprey (Bulletproof guy) interviewing Dr Gundry - v interesting. On Bulletproof website and poss you tube. Fascinating info they talk of about lectins but also how our gut bact communicate to our mitochondria :)

Kipsy profile image
Kipsy in reply to LynneG

Hi LynneG - great info! Thank you! Yes I'm in the UK- I'm seeing a nutritionist who ordered the Genova tests for me. They threw up all sorts of nasties (parasite, absolute dearth of good bacteria, SIBO, low stomach acid, candida, leaky gut off the scale etc etc) which was a bit shocking as I've cooked from scratch every night for the past 11 years (husband loves healthy food) & we grow our own fruit & veg, make our own apple juice and have even raised a herd of grass fed organic beef cattle for 5 years which we fill the freezer with. Like you, I love using almond flour for the odd cake & to make a bread substitute and my daily treat is 85% dark choc melted on fruit, seeds & nuts. I haven't cut out dairy 100% & do eat lots of tomatoes, aubergines etc when in season so those might be the next things to go. I agree about everything tasting sweet now- taste buds have definitely changed but sadly not lost any of the excess pounds 😩

Kipsy profile image
Kipsy in reply to LynneG

PS thank you v much for the suggestions of what to watch & read. Genova tests showed my mitrochondia are not producing much energy either so I'm grateful for your advice. X

LynneG profile image
LynneG in reply to Kipsy

Hi, Kipsy, thanks for your reply too.

Before I forget, Mitochondria support.

Cocoa polyphenols improve mitochondrial function. Google and look at studies.

A study title: The neuroprotective effects of cocoa flavanol and it's influence on cognitive performance'

A good report, lots of info. I was so pleased as drink cocoa every day - Bulletproof (Dave Asprey) cocoa, butter, coconut oil, boiing water and froth for 20sec with hand blender. I buy from Amazon, Bulletproof cocoa powder, expensive but worth it.

BDNF for mitochondrial health. BDNF is created by exercise. Any aerobic exercise. not taken to extreme.

Walking excellent - but improved with hiking/walking poles as co ordinates arms and feet. Full body work out then, chest arms/as well as legs hips. But the vibration re arms and leg movement helps the brain.

I remember neurologist asking dad after he had a small stroke - when did you stop swinging your arms when you walk. Which was atell tale sign of brain degeneration.

So all this science fits together with my mindset.

There is also a nordic invention, the Smovey. coordinated vibration as carry in each hand, stimulates brain as walk and swing arms.

A bit expensive, cheapest I found was £85pr so sticking with my walking poles for now, only cost £5 each

CoQ10 for mitochondria. Have you heard of 'Oceans Alive'

marine phytoplankton. A liquid tastes foul but take drops in about an inch of strong tasting juice and it's hidden. I use organic Biona tart cherry juice (Amazon) The Oceans Alive really boosts energy, contains all minerals needed to support life. Phytoplankton bottom of the food chain so supports all life. Where fish ultimately get their omega 3s from. So Expensive but never another worry re getting full complement of minerals in natural plant form/ omega 3's that is not going to get oxidised like fish oils, some vitamins, and I believe CoQ10, I read once but cannot now find. But as has such an effect on brain health and energy, I would say that is correct.

I buy from Oceans Alive.co. uk - cheapest I can find. I buy 100ml as far cheaper than buying 30ml. But can get 30ml from Amazon.

I take it you use coconut oil and A2 butter (Guernsey grass fed) contact with Waitrose, olive oil and avocados, eggs for fat and not unstable polyunsaturated bottled oils lining the supermarket shelves which are free radical promoting and inflammation causing

I know true free range eggs are full of choline. Choline cleans out your liver to prevent Fatty Liver (caused by refined carbs, fructose in drinks mainly) Also the choline helps the methylation cycle as it helps preserve SAme we make, a methylator,as can be used up making acetycholine (neurotransmitter)

I presume the Nutritionist you see privately and the Genova tests expensive?

I would like to have a food antibody test if can afford it. To see if eating any foods that I have created antibodies to. The best seems to be Cyrex Labs. But just wondered if you have had such tests and whether you have used Genova and if you thought well of? I don't know when your nutritionist advised Genova as Cyrex has only been in London for 3yrs+ I think.

Good to talk to you :)

Kipsy profile image
Kipsy in reply to LynneG

LynneG - thanks for all this amazing info. I'm sure it's useful to lots of people out there reading. I've PMed you about the costs of the Genova tests etc.

LynneG profile image
LynneG in reply to Kipsy

Thanks Kispy for your info too, we share and we learn :)

LynneG profile image
LynneG in reply to Kipsy

Thank you Kipsy, will reply later

Here is something to check out for mitochondrial health. Dr Mercola/you tube vide of the Nitric Oxide Dump. Nitric Oxide stops the blood cells clumping and increases flow and exercise creates more mitochondria. Really short easy exercise which creates the NO dump As you can see dated July 2017. Ok I have trouble with the only poss troublesome one of the 4 the squat as had broken ankle. But just squat to a chair or whatever height you want. So asically easy. and very health promoting. Remember to breathe through your nose. I feel good when do. And if not sure about benefits of NO see British GP/cardiology specialism (more mitochondria in heart cells than any other organ)

His blog. 'What causes heart disease' 35 posts and counting. I haven't read all yet/saved later ones to read. But love him, his witty style,, really cheers you up. I read both his books, The Great Cholesterol Con 2007 and Doctoring Data 2014 (Amazon) you will never look at the British med system/NHS the same again. D Data a Fabulous empowering book.

Trust me, you will enjoy the exercise

PS your lifestyle sounds fabulous :)

youtube.com/watch?v=tZgqVkX...

LynneG profile image
LynneG in reply to LynneG

oops Kipsy - brain dead ;) British GP/author/one time adisor to NICE and European Board of Cardiology - so not your average GP, Dr Malcom Kendrick

Kipsy profile image
Kipsy in reply to LynneG

LynneG - you've given up SO much of your time to provide info and links! Thank you again. I shall certainly make a note of lots of it as you sound very knowledgable and there's masses I don't know. I currently take ATP Fuel to support the mitochondria. From Amazon, 5 tablets twice a day. I'm not sure how much help it is but will stick with it for a while longer. I feel shattered!!! Most other hypo symptoms are so much better since going GF then Paleo and getting thyroid meds prescribed but the fatigue is like nothing I've experienced since pregnancy. I know everyone on here will relate to that 😤😡😡

thanks so much again x

LynneG profile image
LynneG in reply to Kipsy

Hi Kipsy, thank you for saying so but I find it interesting to learn this info. And sharing helps me too as consolidate it in my head. There's masses we all don't know. We just know different things. For instance I didn't know there was an ATP Fuel supplement.

I take a methyl B12 supplement but also an Adenosyl B12 - which apparently is the form of B12 that supports mitochondria (rather than methyl) Other forms of B12 like Hydroxy have to be converted to a useable form and so converted to methyl or adenosyl dependant on requirements I presume. I buy B12 both methyl and adenosyl from Amrita Nutrition .co .uk - brand Seeking Health

However listening to the Genomic Summit Interviews with James Maskell who organises the monthly Functional Forum conference presentations. The expert on methylation Dr Kara Fitzgerald .com was saying that balance was key with methylation. (not necessarily supplements )

That Global methylation actually activates genes. Down regulates genes that would upregulate cancer and autoimmune etc. And will activate suppressive protective genes if in balance. Shows to me importance of methylation and B vits

That vitamin D is a methyl adaptagen (balances) So why we need up high especially if not well so up over top of the range of 125mmol more like 150. That exercise balances methylation, along with sleep and regulation of stress.

She listed foods for methylation balance - to have some of every day

No 1 really important

Rosemary (an antimicrobial and methyl adaptogen

Shitake Mushrooms

Curcumin

EGCG (green tea)

Vit D

Berries

Quercetin

Resveratol (?)

and Methyl Donor rich diet

Liver

Beetroot

Eggs (spares body having to make choline - so spares methy donors we make eg. SAMe - needed to make neuro transmitters Acetecholine

Blood test Homocysteine checks how methylation going. B12 function converts Homocysteine back to methionine. So therefore

Homocysteine shouldnt be high in high 9's or higher

get to level of 8 or 7 even better.

Available with NHS just has to be in the lab within the hour of being drawn. So have taken at the hosp blood dept. Easy as no app usually. Your GP just hast to request on your computer records and you give your NHS no. to the nurse taking blood. :)

Kipsy profile image
Kipsy in reply to LynneG

Hi Lynne!

Amrita is a good website- I'm on a product from there called Interfase. Apparently it's something I need to 'disrupt the biofilm matrix that embed pathogens' I've also been taking Biofilm Defense which also destroys the slimy film around bad bacteria. Both make me feel extremely nauseous! 😩

Thorne make a good product called Methylguard. Its available from Amazon. 2 tablets a day.

I wish I was more medically minded as, despite a reasonably good brain, the scientific side of all this eludes me!

As we are currently on holiday in Crete, my husband has seen the number of pills I'm popping each day (I think individually they add up to 29 a day spread out!) He is gobsmacked! I have two weeks left of this 8 week protocol to destroy the various parasites, candida and bad bacteria and I'm hoping I will feel a bit better as I feel much worse than before I started at present! Counting down the days....

X

Macgirl777 profile image
Macgirl777

Hashimotos Thyrioditis & Addisin's Disease (adrenal insufficiency). Diagnosed about 3 yrs. apart.

Yulia2010 profile image
Yulia2010

Thanks so much to everyone who contributed. Amazing info!

Kipsy profile image
Kipsy in reply to Yulia2010

Thanks for asking the question in the first place, Yulia2010. Ice certainly learnt a lot!

Kipsy profile image
Kipsy in reply to Kipsy

* I've

JellyJac profile image
JellyJac

I am hypothyroid and have Menieres Disease too..

mauschen profile image
mauschen

Mine started with pernicious anaemia more than 30 years ago then IBS, chronic gastritis A, Hashimoto in 2016 (already primary hypothyroid since 2011) , adrenal fatigue and diabetes type 2 which endo relates to my autoimmune situation. Someone mentioned asthma which is linked to inflammatory and hypersensitivity disease but not sure if it is autoimmune in my case.

On the bright side, I have most conditions under control at the monent. It's a real juggling act but one I need to do.

My advice would be to take the bull by the horns and arm yourself with information. Depend on no one but yourself and lean on others for advice and support.

Good luck!

mauschen profile image
mauschen

2greys posted this very interesting link on autoimmune response on the British Lung forum

vector.childrenshospital.or...

forkat14 profile image
forkat14

Hashi and celiac

forkat14 profile image
forkat14

i have hashimotos and Celiac disease

TanyaSmith profile image
TanyaSmith

I was diagnosed with RAYNAUD'S at about age 37/38 years old nothing was showing at all in blood tests apart from the fact I was very enimic nothing else for years or should isay until about 6 months ago I told the doctors they had to do more tests rather just send me for the same blood test every week with the same result and the same conclusion and this has gone on until about 6 months ago I Am now 44 years so its gone on for that long they decided unpon my demand to do exrays and that's when they told me I actually have rapid osteoarthritis every slight nock or tap Tony fingers or elbows or anything with a joint has me in complete agony even my Raynaud's is starting to leave extreme lumps on every single knuckle on both hands and this has only just come to light in the past 6 months and in that 6 months every joint on both hands have lumps and everything all my fingers are starting to twist leftandrighti have dints in most of my fingers now lookalike I have had chunks chopped out of them cos my knuckles are so big can't cope its driving me almost mad even thought of just ending it all DONT know what else can do

Lisacp profile image
Lisacp

Hi, I was first diagnosed with Hoshimoto's, then Sarcoidosis, told it mimics Lupus and MS because I had similar symptoms, then Factor V Leiden Mutation, got Glaucoma and Cataracts (from the steroids), Pulmonary Hypertension, Heart Failure and now Stage 3 Chronic Kidney Disease! Now because I don't have any of the main things that normally lead to CKD,(no diabetes or high blood pressure) my Dr. is checking for Lupus! I've started with super dry itchy eyes, wondered if anyone has Sjorgens, and if it might be part of this all. *Also, to the person who was asking about thrush, I had it once and used tea tree oil, swished it diluted and it tastes bad, but worked!

Yulia2010 profile image
Yulia2010 in reply to Lisacp

Hi, Lisacp. Thanks for sharing. Sorry to hear your health story...I hope these problems are now under control?

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