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Autoimmune disease overload

Posted , 8 users are following.

cheryl1209
cheryl1209

Hi

I'm just wondering if there's anyone out there who is ina similar situation as me and if so how they cope with it.

I'm 25 and over the past 6 years I've been diagnosed with 4 pretty serious autoimmune conditions. When I was 19, I was diagnosed with Rheumatoid Arthritis which is often crippling, even now. I was told this was an autoimmune condition. Shortly after, I was diagnosed with Coeliac Disease, another autoimmune condition. The Arthritis and symptoms of the coeliac disease when I hadn't controlled it obviously made me feel unwell and I often felt lethargic and unhopeful due to a lot of pain and stuff going on in my body. 

I managed to go on a clinical trial which allowed me to have a new and powerful arthritis drug which dramatically improved the condition and I managed to cut gluten out of my diet. I also lost a bit of weight - thi helped. 

However, after the trial, my symptoms of arthritis gradually came back but was uually kept under control with the exception of a few flare ups. 

When I was 23, I was diagnosed with Type 1 diabetes after getting a very quick onset flurry of symptoms (another autoimmune condition) - I find this very difficult to manage. 

I've recently moved cities and transferring all of my specialists and treatments left me with no arthritis medication, and a long wait until I see a diabetes specialist to adjust insulin levels. As you can probably imagine, I've been in an awful lot of pain and been feeling very down, tired and lethargic. I'm very upbeat although having so many conditions and I don't let it bring me down, even though I work a full-time job 8 til 5 everyday. I've been having problems with blood tests, platelet counts, that kind of thing. 

I was aware that I had the antibodies for Hypothyroidism as I had the test for that about a year ago and I knew it was just a matter of time before I developed it. Upon my most recent blood tests, my TSH level was 47.7 - ten times the top end of te normal limit. I've literally just started levothyroxine but, as you can imagine, I feel completely overloaded with health issues and like my head is going to expload and quite down about it all. 

I'm sorry to give you my life story but I was just wondering if any one else has any of the other conditions I have and how they manage with all of them? 

Also - how should I have been feeling with a TSH of 47.7? Should I have been feeling VERY different because, like I said, I always feel fairly tired and down due to the combination of illnesses. Any advice at all would be appreciated - I feel massively alone with this.

Thanks

Cheryl

1 like, 20 replies

20 Replies

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  • Carolannfud
    Carolannfud cheryl1209

    Posted

    Hi Cheryl, sounds like you have been having an awful time the past few years. It is so draining feeling unwell all the time. I'm no expert but I think the reason the TDH is high is because it's trying to get a message through to the thyroid to produce more thyroxin. I would imagine you would feel lethargic and depressed with such a high TDH. Tiredness seems to be the standard feeling for anyone hypothyroid regardless of what hormone levels

    are. So often I think we just have to keep faking til we make it! 

    • cheryl1209
      cheryl1209 Carolannfud

      Posted

      Hi 

      Thanks so much for replying. Yeah she said the other hormone was quite low which determined I definitely had hypothyroid. But she was asking me if I'd felt different and I couldn't reall answer her - I'm always tired! I haven't felt depressed before until recently so I'm hopeful that getting my levels right again will help with that! It's just so much to deal with, sometimes it's like there's too much!

      Cheryl

  • jean34329
    jean34329 cheryl1209

    Posted

    HI Cheryl

    Firstly may I say that I have the greatest admiration for you.

    I  can fully understand where you are coming from. 

    I myself am finding it very difficult to keep a brave face on everything or anything.

    I have not received a diagnosis as to whetehr the thyroid is causing hypo or hyper but I have recently been diagnosed with a multinodular goitre as an incidental finding on a CTPA scan that was done to exclude a pulmonary embolism.

    I am now awaiting an urgent referral to endocrine surgeon and physician.

    i thought I would reply to you because I was interested to know he specific blood tests that were done to establish the diagnosis of Hashimotos disease.

    I am very worried because the hospital where I have been referred to according to an endocrine nurse does not do antibody tests. Bearing this in  ind I am wondering if it is worthwhile even attending . I can get the tests done privately I suppose but something holds me back.

    I am suffering with aches, pains muscular stf

    iffness for over 12 months.

    I understand that this is part of the condition but why?

    Jean 

    • cheryl1209
      cheryl1209 jean34329

      Posted

      Hi

      Thank you - it is hard when other people around you are fine and just can't understand. 

      I'm so sorry to hear that - it's not something I know anything about but I really do hope that it isn't too serious and it can be sorted.

      I wasn't living in a big city at the time I was tested for antibodies but, due to the amount of autoimmune conditions I already had at the time, my Doctor arranged to get some blood tests done and sent off to a hospital in Newcastle - as this was the nearest place that would perform the test.My GP arranged this.

      It may be worth going to your GP and seeing if they can send a test off if you're very concerned? My test came back positive, and that was that.

      I know that you are much more likely to develop other autoimmune diseases if you have 1 already - so if you do get diagnosed with Hashimoto's (autoimmune) then it may be worth getting other antibody bloods such as coeliac disease antibodies, rheumatoid factors etc. Autoimmune means that your immune system ttacked part of your body and since joints and muscles are all over your body, apparently this is why alot of the pain/stiffness can happen. Similarly, the body attacks the thyroid as in our case and the thyroid eventually gives up.

      I think going to  a GP is often more productive than a specialist smile

      Thanks

      Cheryl

  • barbara98940
    barbara98940 cheryl1209

    Posted

    Hi Cheryl, I'm no expert, but I'll try and answer your questions from what I've worked out over the last 24 years of haveing autoimmune hypothyroidism and other auto immune diseases. It sounds like you have a lot going on. First of all I'd like to say that mild depression (i.e. feeling 'down') is a symptom of hypothyroidism (as are lethargy and fatigue) which will improve as you get nearer to the correct dose. 

    A number of things occur to me. If you read the posts on this forum you will see a common theme. Hypothyroidism affects your metabolism down to a cellular level. It can mean that you are deficient in other vitamins and minerals. The major one is Ferritin (to be able to use the Iron in your diet your body has to convert it to Ferritin). It is possible to have a normal or high Iron count and a low Ferritin count simulaneously. I did. My consultant told me that I needed a Ferritin level of 50 to be able to metabolise thyroxine correctly (another person on this forum says 80). So I was technically anaemic though an initial look at my Iron count said I wasn't. Anaemia makes one debilitatingly tired (just like hypothyroidism) - have a look at the symptoms.

    Also, Vit B12, Vit D, Magnesium - a deficiency in any of these can make you feel awful. Other people have suggested that Potassium and Calcium also need to be checked (hopefully you will get further replies to add to this list if I've missed any).

    Here comes my autoimmune life story...My list of autoimmune diseases goes like this: I started off with hypothyroidism, then low platelet count, allergic Rhinitis (I'm allergic to dust), now loads of allergies and intolerances. In 2007 I became allergic to Penicillin after being OK with it for 40ish years. I have since become allergic to cats, oranges, red pepper, tea. About two years ago I developed a Histamine intolerance (see UK website Allergy UK). In the last 6 months I've also become allergic to wheat and milk. I think what I'm trying to say is that, with the way you (like me) are developing more and more autoimmune diseases it's a good idea to minimse the foods that are known to cause autoimmune reactions in many people. This way you hopefully won't develop an allergy to these foods and will be able to continue to eat them, albeit in smaller amounts (I'm particularly thinking of dairy and soya).  I'm aware of how depressing this all sounds - it isn't meant to be, I'm trying to help you ward off getting any more autoimmune conditions. If you want to find out more about hypothyroidism, look up the UK site Thyroid Patient Advocacy under the section Resources. They also have an article on being newly diagnosed with Hypothyroidism which is very informative.  All the best.

    • jean34329
      jean34329 barbara98940

      Posted

      Barbara

      May I add that another thing that has happened again since December 2013 is that I am very wary of what I eat.

      Can you possibly send an example of a daily diet to cut out gluten, milk etc. I tried almond milk but that disagreed with me.

      I am taking warfarin so have to restrict vit K.

      Jean 

    • barbara98940
      barbara98940 jean34329

      Posted

      Hi Jean, Almond milk also disagreed with me. I've tried soya milk (no good - it is on the histamine intolerance list - no 'nuts', plus I can't stand it!), rice milk was nice, though I reacted to it (guess what? It too is on the histamine intolerance list - no 'grains'). I can recommend Oat milk. I use Oatly, and shop around as it is usually priced at £1.35 a litre, but somewhere is usually selling it for £1. There are two versions, one is fortified with calcium, the other is organic - I went for the calcium one - as I've got an underactive thyroid I need all the calcium I can get, particularly as I can't have milk products.

      I can't honestly recommend my diet, either for variety or nutritian. I'm very limited as to what I can eat without getting Hives, Excema, swollen and painful joints/tongue etc.

      Morning - porridge made with Oats (cheapest is as good as expensive) and Oat Milk. I try and eat my biggest meal in the middle of the day.

      Dinner - fresh/frozen fish with steamed vegetables or fresh/frozen meat with steamed vegetables.

      Tea - Home made vegetable (carrots, brocolli and cabbage) soup using homemade chicken stock as the base. Just discovered that sweet potato added to it is delicious. That's it! Boring.

      Back in Februrary my doctor referred me to a Immunologist, though I've not yet heard anything, so last week I asked him to chase it.

      I recently asked to be retested allergies via a RST blood test (somewhat unreliable). Previously it came back negative, this time positive for wheat, egg white). I was told I was allergic to egg, but when I looked at the test results, I was only tested for egg white. Egg white is on the histamine intolerance list, egg yolk isn't. So I'm still eating egg yolk. This will be under constant scrutiny. This becomes relevant in a moment...

      One thing you might be able to do...

      From Asda's freefrom aisle, I bought a no-gluten bread mix (Helen's brilliant bread mix). It says to add egg and milk.  I used Oat Milk. It worked. The recipe says to use an egg, but as I'm allergic to egg white, I used two egg yolks and made the liquid up with 50ml extra Oat Milk. Unfortunately, I had a reaction due to the 'no grains' part of the histamine intolerance, but it was nice enough (though you have to remember my view of nice has been somewhat compromised!). 

      I also made toffee popcorn. Unfortunately, I ate so much of it on Saturday when I made it, that I have now got a sore gum and am having to rinse my mouth out with salt water after every meal. Serves me right. But it was so good to be able to eat something nice!

      Sorry about the rambling reply. Asda's freefrom range is the best I've found so far, though sainsbury's and morrison's also have some good stuff.

    • barbara98940
      barbara98940

      Posted

      Oh yes, I also eat a lot of roast chicken. Pre-cooked chicken and vegetables tend to have preservatives in them so I avoid them. I buy chicken thighs (easiest to skin prior to cooking) from Lidl or Aldi and roast lots of them in my grill pan, then bag them up into individual portion sizes and freeze them. When I want to eat some, it only takes 1 minute in the microwave to thaw and heat it. My version of a ready meal!
  • lesley1414
    lesley1414 cheryl1209

    Posted

    Hi Cheryl. Last year I was diagnosed with auto amune hepatitis. I also have chronic fatigue and arthritis I spend a lot if time in bed.But I do what I can for myself,when I can, I suffer from bipolar and agraphobia. I cope with keeping diarys writing children's stories/and poetry I also collect teddy bears and zelfs, I also love doing colouring in adult pattern books and making model sets for my bears and zelfs. I have also recently been diagnosed with autistic spectrum.i hope you find something good that will take your mind of your problems like a hobby, I wish you all the best.
    • barbara98940
      barbara98940 lesley1414

      Posted

      Hi lesley, if you're also cold and have other symptoms of an under-thyroid (hypothyroidism) it's worth asking for a blood test to check your thyroid levels - because if you have one autoimmune disease you are more likely to get another.
    • barbara98940
      barbara98940 lesley1414

      Posted

      Hi lesley, you do seem to have a lot going on health-wise and all stuff that's difficult to manage. Do have support to help you? If you live in UK, have you applied for PIP - personal independence payments? I don't know how old one has to be, to be able to claim, but here is an upper age limit if 65. If you qualify, you get an extra sum of money each month to help with the additional costs you incur with general living.

      I can send you a private message with the links to the form and guidance notes if you want them.

      Barbara x

  • barbara98940
    barbara98940 cheryl1209

    Posted

    Hi cheryl, I'm staggered that you're managing to work with all the auto immune conditions you have! It's bad enough having one of them. I suspect that you didn't notice the thyroid symptoms because many are similar to the symptoms of the other autoimmune conditions you have e.g. muscle and joint pain, fatigue. Also hypothyroidIism can creep up on a person so gradually that one doesn't notice for a long while. Your relatively young age might help as one's body seems to be able to handle more when it's younger. I'm speaking from experience - I was 28 when I was diagnosed with hypothyroidism with a TSH of 170.
    • cheryl1209
      cheryl1209 barbara98940

      Posted

      Hi Barbara

      Thank you for all your help and advice! It can be hard to live a normal life working a 40 hour week job with all that's going on but I don't like to feel like I'm a victim and I have a lot of determination to live a normal life as possible - especially at my age (I don't like to miss out!). I'm hoping that the sooner I get everything under control, the better my quality of life will be later on. Can I ask - has hypothyroidism affected your weight in any way? I'm often trying to lose weight and do manage to but maybe not as quickly as I'd like. I'm hoping that when the levothyroxine kicks in and my levels become more normal that I won't struggle anymore?

      Cheryl

    • barbara98940
      barbara98940 cheryl1209

      Posted

      Hi Cheryl, it's very difficult to lose weight at all if you have an untreated underactive thyroid. If you have lost any, that's amazing! Once you are on the right dose it is easier. However it isn't a recipe for being able to eat what and how much you like! I found that if I ate bread I put on weight disproportionately to the amount of calories I ate. Same with processed foods such as pasta pots and cuppa soups. No idea why. Porridge, made with skimmed milk and no sugar, was good and filled me up and had few calories. It's also good for the immune system, which was a bonus. With autoimmune hypothyroidism (aka Hashimoto's) one is more likely to have food allergies and intolerances (and develop them in the future), so it is a good idea to minimise the amount of processed foods you eat e.g. pizza, burgers, ready meals, cakes and biscuits. Avoid foods made with white bread and white flour (high glycaemic, whereas wholemeal bread and flour isn't). Also stick to raw cane demerara sugar. Worth checking for Addisons disease (Synacthen test), as one source i read said if one's adrenal glands weren't working properly, they needed to be fixed before starting thyroid medication (I had the test today - only 24 years too late!) Private endocrinologist i saw on Saturday requested this test. Private test is reportedly more sensitive than one NHS does and will tell if one's adrenal glands are struggling as well as if got Addison's or Cushing's disease (the extremes of adrenal gland problems).

      So, yes it is likely you will lose weight, but you will still have to work at it!

      I'm hoping kniwing this stuff will mean you are able to delay, or fend off completely, any further immune system problems.

      All the best. Barbara x

    • barbara98940
      barbara98940 mary59914

      Posted

      Mary, I'm sorry, I can't remember. Try looking on thyroiduk. Barbara
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