Question for Autoimmune Thyroiditis sufferers

[Joburton]

Please excuse the length of my post.

I have been considering common symptoms and a member's recent post about mucin has made me think. I would like to look into theory that suggests symptoms could be more of an immune issue than previously thought.

I am 5ft tall and weigh over 13 stone. Strict dieting may lead to minimal temporary loss but it reaches a plateau and creeps back up again. My weight generally doesn't fluctuate, regardless of dietary intake or activity. The mucin just sits under the surface of my skin and 'stagnates' It is especially bad in areas corresponding to intersections of the lymphatic system.

I have heard that the mucin is likely an accumulation of protein rich lymph fluid.

Over the years I have developed groups of hard painful lipomas in these areas.

Only the swelling of my extremities and face can vary during the day. I have suffered with these symptoms since I gave birth in 2004, but have only been on Levothyroxine since late 2015.

Over exertion, pressure on skin, some foods and particular medications drastically increase my edema and set of a number of different reactions.

The theory is:

When faced with these triggers, the oversensitive immune system overreacts and leads to mass degranulation of mast cells. Antihistamines can block the histame receptors in cells to prevent inflamation, but in the meantime the molecules still in the system are recirculated from the blood stream to the lymph system. The overloaded lymphatics ore overwhelmed and get backed up; thus leading to the congestion problems we all experience.

It took a long time to get this bad, so I suppose I can't expect a sudden miraculous recovery. Since my hypothyroidism is immune related, there's a strong possibility it's connected to a Mast Cell disorder. It's relevant that sufferers have other autoimmune conditions, ie chrohns, autoimmune arthritis, lupus, endometriosis

Question; Do any other Hashimoto's sufferers on this forum have recognised allergic triggers? Symptoms can be digestive, respiratory, dermatological (hives) and systemic.

[HarryE]

My immune system had always been a bit dodgy, very hyperactive, before I was aware I was affected by Hashi's. I violently reacted to insect bites, was severely allergic to house dust, got hives in the sun etc etc.

I have been on NDT for 2 years now, and all these symptoms have decreased significantly. I've not had heat hives at all, I no longer take a daily anti histamine, haven't used inhalers for over a year. My antibodies were almost 2000 & are now back in range. It seems to have calmed my whole system down

[Joburton in reply to HarryE]

It's a 'chicken and egg' situation. I'm wondering if improperly functioning thyroid leads to mast cell activation disorders or vice versa. It's becoming more apparent that modern complaints seem due to systemic inflamation. There are articles in the news daily that point to links with depression, diabetes, etc, etc

[HarryE in reply to Joburton]

I think my immune system damage was caused by chronic stress, fear & abuse as a child. The constant activation of your fight/flight system is very bad for your HPA axis. For me, that came first

[Joburton in reply to HarryE]

I can't imagine what you have been through, my childhood was not exactly idealic, but I knew I was safe and loved.

It may be stress exacerbated my situation too. Prior to diagnosis of fibromyalgia then hashimoto's, my stress levels were off the scale as a result of my illness 'being in my head' and being criticised/ verbally abused for being 'lazy, useless, pathetic and ineffectual' This all happened in what was supposed to be a nurturing relationship...

All aspects are much improved now I don't have to defend myself any more.

[HarryE in reply to Joburton]

I think stress is a contributing factor to a lot of illness. The word is so easily bandied about, but true biological, environmental or emotional stress is so damaging.

[Zoz1 in reply to Joburton]

Similar for me though nowhere near what Harry has been through. I have always suffered terribly with anxiety (panic attacks about spelling tests at age 5, sound ridiculous I know but very debilitating and not to mention horrible for parents) and this was exacerbated when I got bullied badly at school (verbally and physically). I was lucky to have a happy home life but that couldn't counteract the bullying. I cannot remember a time since when I've been totally stress free! You've both seen my other post, I am hugely stressy.

I suffer a lot of very bad skin allergies and eczema. Dreadful reaction to insect bites. Gigantic mouth ulcers which have been put down to auto immune. Also hives in the sun. All skin related though. Never respiratory or GI. I'd not put these together before I saw these messages!

Genetic wise, my family is full of anxiety and depression sufferers. Lots of rheumatism and allergies too (thankfully not for me yet). X

[Joburton in reply to Zoz1]

Thank you, again it looks like a possible mast cell connection... apparently stress can trigger degranulation on it's own! Not all people react the same as there is quite a wide spectrum of symptoms. Do you find antihistamines help?

[Zoz1 in reply to Joburton]

Not in the slightest but do get a lot of success with ibuprofen and am lucky that I can take high doses without any stomach upset. For the skin reactions I often use a strong steroid cream (elocon) which resolves reactions quickly. Antihistamines don't seem to touch it but I have only had over the counter.

[Joburton in reply to Zoz1]

Elocon is great stuff in moderation, it will dry out a patch overnight for me - unfortunately ibuprofen is one of my triggers, will swell up so much I need hospitalisation, lol.

I was interested in how well antihistame calms down your hives and insect bite reactions. Did you know that higher doses of vitamin C actually counteract histamine molecule for molecule?

[Zoz1 in reply to Joburton]

Certainly didn't know about the vit C, that's useful! I get horrific hives every time we go on holiday somewhere vaguely warm, have tried every antihistamine going and they either don't do anything or send me straight to sleep (still with hives!). Ibuprofen does help in the lovely 600mg form they sell in said countries. I have never had any adverse effects and swear by it but everyone else I know gets awful stomach upset from it. Weird how we can all be so different!

[Joburton in reply to Zoz1]

Apparently taking vit C little and often gives the best results. You know if you take to much because the gut will stop absorbing and gives you the runs instead.

Would you say the hives are more heat rash, or could it possibly be an allergic reaction to your own perspiration (cholinergic urticaria).

[Zoz1 in reply to Joburton]

I do get heat rash as a separate thing, the 'hives' are hard red lumps ranging from pea size to grape and subside within a week. Not likely perspiration as I exercise a lot. I don't really know what they are, they sit in amongst the 20+ insect bites I'm normally plagued with. I do not understand how other people look so radiant on holiday!!!!! I need to start going to cold places!

[Ash-S]

My Mum has Hashimoto's and experiences lipoma's in her back. She doesnt have any other autoimmune disorders as far as i know esxept a year ago she had developed Rosacia. She also suffers from arthritis, oesteo perosis and scoliosis if this is relevant.

Dont know if this is helpful for you!

Ash

[Joburton in reply to Ash-S]

Any information is great! I feel that the only way we can get the bigger picture is by talking to each other... my personal experiences of different specialists for differing symptoms brings to mind the fable of the blind men describing an elephant.

Strange that nobody in the world of conventional medicine seems capable of looking at the body as an integrated whole. In the environment; we all know the importance of ecosystems and the butterfly effect... so why is it so different for human physiology?

[Ash-S in reply to Joburton]

I know - its crazy - whilst i understand the NHS has limited resources - burying ones head in the sand about the existence of the elephant is driving me nuts - for example - how many people have beed prescribed anti depressents without having their thyroid checked out.

Or, for example if my consultant did a thyroid antibody test 10 years ago, when i came down with a virus/parasitic infection which triggered chronic fatigue syndrome, i would have been able to slow down my Hasimoto's. Instead he told me to go eat some yoghurt everyday.......Hmmm

[Joburton in reply to Ash-S]

Don't start me on antidepressants!! I refuse to entertain the idea any more. When you see a gp for fatigue and pain; taking a medication that makes you more fatigued and less able to function is pretty counterproductive.

PS, had previously tried at least 4 variants.

[Joburton in reply to Ash-S]

Which infection triggered your CFS and how was it diagnosed?

[Hidden in reply to Ash-S]

absolutely agree about the antibody test! I too would ave been able to take action sooner. x

[lc1973]

Hi

I suspect what i have is Mucin as i have hashimotos but whatever i have is extremely painful, if you press my skin anywhere on my body it feels like you are bruising me. I had a deep tissue massage last year and i was on the ceiling in pain...the guy that did the massage said most people love this! Be interested to know if anyone else is hypersensitive in this way?

[Joburton in reply to lc1973]

Lipoedema is also known as Painful Fat Syndrome.. so yes you're not the only one. Doctors don't believe you when you tell them either!

I'm also massively oversensitive to what should be non-painful events. Lipoedema is not just limited to the legs, and is part of a group of painful adipose disorders which includes Dercum's Disease with painful lipomas. I'm convinced it's all connected.

Anyone else?

[lc1973 in reply to Joburton]

Im going to google lipoedema! it sounds exactly like what i have. My legs really hurt if the dogs brush passed me with their tails! I feel like such an old lady...im only 43...no disrespect to older ladies by the way! im just saying i feel a lot older than i think i should feel!

Dont know if this is what you are after but a couple of years ago i had sinuplasty as i was having recurrent sinus problems, i asked the consultant surgeon about the sinus problems and he said it could be autoimmune and to make sure that my thyroid medication is optimal. Similarly i have periodontal disease and the dentist said that can be autoimmune too. i have also had fibromyalgia diagnosed.

[Joburton in reply to lc1973]

You must be my twin, I'm 43 next week and am currently suffering with a sinus infection (again).

Please have a google, I think you may find Dr Karen Herbst's site a good place to start.

[lc1973 in reply to Joburton]

Not pleasant sinus infections! i had a referral to E.N.T and ended up with an MRI scan which showed a narrowing of the sinus' hence the operation, i havent had any sinus infections since fortunately. I should have had a further operation but left it at sinuplasty.

[Joburton in reply to lc1973]

I had a MRI a few years ago, but nothing particularly remarkable turned up... was given steroid spray which didn't make any difference. Feel a bit better now as rh sinus decided to release a load of bloody liquid earlier e...

[raggydolly]

I have hashimotos and in the last few months have developed digestive problems. I now react to dairy, red meat, and too much carbs. I've always had a slight problem with bread etc, but never with dairy and red meat. My diet is becoming more restricted by the day! A colonoscopy showed evidence of diverticulitis and IBS.

I've also got high levels of inflammation, originally picked up on a CA-125 testbefore the doctors worked out it was my thyroid. The raised CA-125 led to tests for ovarian cancer (thankfully clear). Since then, a CRP test has also flagged up as 'high'. My antibodies are still raised, so I think there is a link between this and the inflammation. My other annoying symptom is a cough that just won't go.

My mum had Graves, so my hashis is partly hereditary, but with hindsight I think that years of stress and working stupid hours has triggered it.

[Joburton in reply to raggydolly]

So, you too have a history of food sensitivities and inflamation! Have you had the cough investigated; mine was 'allergic asthma' which was slightly relieved with ventolin inhaler. Thank you for your answer, I want to find out more about the CA-125 test, so will have a search now.

[raggydolly]

The doctor did the CA-125 blood test when I presented with extreme bloating, frequent urination. It was raised, so an ultrasound followed. Thankfully nothing sinister revealed. It took another 12 months before anyone considered my long list of symptoms could be caused by thyroid dysfunction! Going GF and getting medication right has sorted the bloating out.

I've had the cough for months, but my GP doesn't seem concerned enough to investigate. I could push for answers, but I've had enough invasive tests to last a lifetime and it isn't bothering me that much. I did hope that cutting out dairy might cure it - Izabella Wentz said in her book that eliminating dairy cured her persistent cough within 2/3 days - unfortunately this hasn't worked for me.

[Joburton in reply to raggydolly]

I keep meaning to go gluten free, but wimp out at the grocery shopping stage. I have had tests that show I'm not coeliac, but wondered if it would help general inflamation and my ability to absorb nutrients!

[Arab in reply to Joburton]

Hi Joburton,

I was diagnosed Graves, and subsequently have tested positive fo Hashimotos. I've found through trial and much error(!) that wheat, gluten and dairy free makes me feel (and look) so much better.

My digestive system feels relaxed and 'normal', bloating eases and acid reflux disappears completely.

It's certainly been the way forward for me, and not nearly as difficult as I thought it would be. Well worth a go!

Arab. 🙂

[raggydolly in reply to Joburton]

You don't have to be coeliac to be intolerant to gluten. There is a strong link between the gut and the thyroid (read Izabella Wentz - 'The Root Cause)'. I read somewhere else that 90% of people with an autoimmune disease ARE intolerant to gluten. It's really not so hard to cut it out. Honestly! Preparing food from scratch and going back to basics is the key. Avoid processed food and buy GF groceries such as pasta. You can do it !!

[Joburton in reply to raggydolly]

I have to admit my problem is bread, I just can't resist the stuff!

[Cmat]

I react to gluten, caffeine, alcohol and many other foods - digestive issues but also headaches and burning and dry eyes (burning from caffeine, dry from sugar). I recommend trying an autoimmune paleo diet- there are some good cookbooks and Facebook groups that make what seems an impossible amount of elimination of foods slowly achievable. I'd got to the point of trying anything, and this has many success stories.

[EKASUK]

Very interesting read this post and could explain a few things for me...

I was diagnosed hypo about 7 years ago, although the doctor has never mentioned the word hashi's to me, I think I am as my antibodies are always between 1,000 and 3,000 (the only convo we had on this was early on before I started educating myself when after starting levo and my TSH came down I asked why antibodies did not to which I was told 'they do not matter', I now know that is wrong!).

When I was younger, I was diagnosed with asthma in the way I always thought of it, in that when running etc. I would struggle to breathe, it was never serious and in all honesty part of me has always wondered if it was true asthma or was I just a little chubby and struggled to get my breathe a bit....anyway I hadn't taken my pump or had any issues since I was about 12.

Year before last at age of 30, I started with a cough that wouldn't go away after several months, I didn't think too much of it as it was the time where everyone was getting the sniffles etc. they were struggling to shrug off. Over time a clear, sticky mucus started building up and it got to the point I had to do something as it was making me choke in sleep and although it wasn't ever the 'oh my god, I cant breathe' type of reaction I always thought of asthma as, I did notice I felt like I wasn't getting enough air in and I was short of breathe going up stairs...I felt like an old lady walking around and the fact I didn't drink any alcohol on Christmas day was a sure sign something wasn't right so my mum quickly marched me off to the doctors.

After a few more months, several trips, 3 lots of different antibiotics (later found out was never any infection) and an x ray I was finally referred to the most wonderful consultant. I was diagnosed with an allergy (not sure by what yet) triggered asthma which then produces the mucus. I am now on an inhaler that doesn't help when I can't breathe but is more preventative in that I take morning and night to stop the build up of mucus...I really do notice when I forget to take it.

Although he was aware I was hypo, he didn't mention any link but if I do have hashi's then it does make sense this autoimmune issue/the asthma related allergy.

Another one that I am sure will make you smile is an optician once told me I could be allergic to alcohol! I only really drink wine and sometimes, can vary a bottle to just a glass, I wake up and have the most horrendous eyes that I literally cannot open them, it is like someone has poked me in the eye with a brush and does cause me to have to plan being home after a night out as otherwise it lasts most of day and so I cannot drive home if staying elsewhere. He said it could be some kind of allergy to something in the wine...it is worth the random risk of 'will it, won't it' though...I think I will keep up my love of pino!

[Joburton in reply to EKASUK]

I'm getting more intolerant to alcohol as I get older. Have never been much of a party animal but am partial to a nice cold glass of Asti... Can't cope with vodka though; In my younger years I spent too many evenings crying over a toilet seat whilst my friends partied. That taught me not to touch the stuff!

[Hidden]

I have many allergies to foods and meds. The allergies suddenly came on followed by Hashimoto's. Some foods are intolerance others anaphylaxis type. I have an epi-pen. I am severely allergic to thyroxine so take liothyronine.

Over the many years since this all started in 1981 I've tried removing foods from my diet, gluten is the latest yet again but nothing lasts long. Originally I was diagnosed with ME then the Hashimoto's then fibromyalgia then pernicious anaemia and of course hypothyroidism. I still do not believe I have all the answers yet.

At the moment my biggest problem is a gastric one. I totally refuse to take PPIs.

For me I know this illness goes in a cycle. One week I will have this symptom, the next another and so on over roughly six weeks. Have any of you noticed that? Would be intriguing to find out.

I hope we all get some answers soon. Regards to you all. 💐

[Joburton in reply to Hidden]

How do you get on with apple cider vinegar for your gastric symptoms? I'm similar to you, with numerous diagnoses for conditions that I feel are merely symptoms of an underlying problem. I haven't noticed a cycle, but then again I had a hysterectomy at 38 so have no menstrual component.

[Hidden in reply to Joburton]

Whenever I start some new meds or food I take the minutest dose possible and very very gradually add. Sorry, lol, I didn't mean the menstrual cycle but what I think is the cycle of my illness. At the moment all I want to do is sleep sleep sleep but try to resist so I sleep at night, which of course I don't. I know when I sleep well for two nights running then I'm going to be more ill.

'M' 🌺

[Hidden]

Forgot to mention the swollen legs and painful to touch syndrome, yes I have those too. I was told I have 'the princess and the pea' syndrome. I have the sinus problems as well. AND, my teeth just literally fall out of my head. Not a pretty sight!

I need putting in a bag and shaking up.😀 Husband got a poor deal when he married me! 'M'

[Joburton in reply to Hidden]

You poor thing! My teeth are one of the few good things I've got going for me 😆 I feel sory for my hubby too, he never signed up for this when we tied the knot in '99

[Hidden in reply to Joburton]

Mine has suffered it for it since my diagnosis which is 34 years ago! A life sentence! 😅

[Cezar81]

Hi guys. I am new here. If you react to all sorts of food or have any autoimmune issues it can be your gut. You might have a leaky gut, disbiosis or bad bugs. Without an adequate test you're left guessing. You need to find the root cause of the problem and to adress it. Other topic woul be gluten. Gluten is pro-inflammatory and can cause 55 diseases according to New England Journal of Medinine article. I hope it helps