Don't Judge This Book By Its Cover

People with Hashimoto’s come in all shapes and sizes, so don’t be fooled. Don’t judge this book by it’s cover. Some may have only one symptom or none at all and some may have every symptom in the book, this is therefore why I perceive that it must be difficult for doctors to diagnose, but I’ve done so much research that I’ll find myself in a room full of strangers and I look for people that might fit the picture of Hashimoto’s or I'll listen to someone who is having health issues and no luck in finding a diagnosis and I find myself wondering if they have any idea the picture they fit or the right questions to ask their practitioner. I’m no doctor, but my intuition tells me that Hashimoto’s is all around us. I think the occurrence is far more common than any of us realize.

When I was roughly nine or ten I was diagnosed with Vitaligo and Psoriasis. Then when I was twelve I was diagnosed with Juvenile Rhuematoid Arthritris. These are all autoimmune diseases. The clue here for doctors should have been the Vitiligo. It is closely tied with Hashimoto’s disease , another autoimmune disease and all four of these diseases are commonly clustered together. There is a gene called NALP1, which is usually found in patients with this type of cluster. More information can be found at: http://www.nejm.org/doi/full/10.1056/NEJMoa061592. I haven’t been tested for this gene, but would suspect they would find it if I were to be tested. My question is which came first, "the chicken or the egg", the "Hashimoto’s or the Vitiligo"? My personal opinion is that the Hashimoto’s was first on scene and therefore the puppet master of all or most future medical conditions that I would face. In fact these four autoimmune diseases are often found together, so any one of these should have been reason enough of an indicator for doctors to test thyroid anti-bodies as well as the fact that I had more than one autoimmune disease and just about every hyperthyroid and hypothyroid symptom in the book and then some. I feel it is important to paint the picture here because being armed with information can help someone else perhaps put the pieces of their own puzzle together much faster than I ever did and perhaps mitigate adding any other related health issues to the list. 

Here is a list of conditions and symptoms that are directly or indirectly linked to Hashimoto’s, which I am either currently experiencing or have experienced at one time or another. I will go into further detail about some of thes in future posts:

Plantar fasciitis with heel spur and an arch that is collapsing

Adenomyosis/Endometriosis

Uterine fibroids

Tilted Uterus

Dysmenorrhea

Menorrhagia

Metorrhagia

Hemorrhoids

Dyspareunia

Hemorrhage

Mittleschmerz

Fibrocystic breast disease

Fibrodenoma – interductal papiloma

Low Libido

Night sweats

Insomnia

Melasma

Goiter

Thin, dry brittle hair and nails

Hair falling out

Tinitus

Dry skin

Vertigo

Lightheaded

Depression

Anxiety

Brain Fog

Gall bladder disease with chronic Cholecystitis

Cholesystechtomy as a result with a second surgery for stones left in the bile duct which in turn caused a back up of bile and jaundice, very toxic and itchy like you cannot imagine.

Fat malabsorption

Digestive problems

Chronic Sinusitis

Community MRSA

Allergies to food and environment

Bronchitis / acute asthma

Candida overgrowth

Intestinal Parasites (a recent discovery)

Iron deficiency, almost anemic

High Cholesterol and Triglycerides

High normal fasting Glucose

Hypothermia/Low body temperature

Sensitive to cold and heat

Difficulty loosing weight or keeping weight off

Lethargy/Fatigue

Hypertonic muscles most of the time, which is very painful at times

Torticollis

Osgood Schlatter Disease

Mitral Valve Prolapse/ Heart Murmur

Dyspnea

Palpitations

Paresthesia in the hands and often under right shoulder blade near the Rhomboids

Among other health issues, Hashimoto’s pre-disposes its victims to Lymphoma and night sweats can be a warning sign of this.  

A definition of Hashimoto's: http://www.medterms.com/script/main/art.asp?articlekey=24319

A definition of Vitiligo: http://www.medicinenet.com/vitiligo/article.htm#tocb

A definition of Psoriasis: http://www.medicinenet.com/psoriasis/article.htm#what

A definition of Juvenile Rheumatoid Arthritis: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001487/

I hope this post is helpful. Please stay tuned for future posts and feel free to leave comments and to become a member.

Under Diagnosed

Where do I begin? Living with Hashimoto’s is a huge challenge. Some are lucky enough to get their symptoms under control and others despite best efforts are not so lucky. The worst part is that regardless of pain, emotional or physical and how debilitating some of the symptoms can be, leaving us minimally or completely non-functioning, we all look pretty normal. Society expects us to be, act and feel just as normal as we look, but the truth is that we are not what society expects. Some of us put on a pretty good front. Those fronts may be just to save face or so we don’t have to deal with the spoken or unspoken judgments of everyone else. Many of us push ourselves harder than we should, just to keep up with others or for appearance sake. We do this in order to feel as though we are adequate for ourselves and for everyone else. We do it to make others feel we are adequate and most importantly that we are adequate for societal demands.   

Short of being what is considered disabled, there are days with Hashimoto’s that some of us could truly fall under the category of disabled. Most of us will experience times when family, friends, doctors, colleagues or superiors expect us to be as normal as we look and who doubt the severity of what we are going through or what we feel physically and emotionally. The fact of the matter is that none of them understand what they cannot see, but often times what cannot be seen with the naked eye, anti-bodies, can wage a very powerful war within our bodies leaving us with a mess on the battlefield and the aftermath to deal with, which can include a plethora of medical conditions, some of which I will discuss later.  Some  of these are mildly disfiguring, some very painful, some even life threatening especially if we are not lucky enough to get an early and correct diagnosis where proper treatment can mitigate adding more medical conditions or symptoms to the list. Even still with proper treatment it can be difficult to manage and to ensure no other medical conditions rear their ugly head. 

It takes diligence and perseverance on our part and self-advocating when we aren’t getting proper treatment. It takes strength especially when we don’t have it and a good support system when we fall flat on our faces. I have times that I wish I had no idea that I have Hashimoto’s or any of the other autoimmune diseases I have, but the truth is that Hashi and I have each other for life whether I like it or not. There is no choice and no changing it at this point and I’m doubtful a cure will be found in my lifetime though some progress has been made, medically speaking we are way behind the eight-ball. Autoimmune disease research is seriously under funded, yet autoimmune diseases are more prevalent than cancer and the stats are on the rise.  Cancer research is very well funded. Don't get me wrong here, I have plenty of my own medical conditions that put me in a higher risk category for certain types of cancer. I'm glad that cancer research is well funded. It is just time that autoimmune diseases get some significant attention. I just do not understand the elusive nature of autoimmune diseases and what is worse, the majority of the medical profession doesn't understand it either, which is why it is so necessary for advocacy.  

Autoimmune diseases, Hashimoto's, in particular are under diagnosed. Most doctors don’t know some of the very obvious signs to look for and if they do recognize the signs most are not utilizing the appropriate lab work for diagnosis. If a doctor is brilliant enough to actually use the proper lab work and get a proper diagnosis then comes what most patients do not realize, but there are choices for treatment. Yes, choices. It isn’t always about slapping a synthetic hormone or an immunomodulator, such as Prednisone on the condition. Often times in certain cases hormones or immunomodulators are the wrong way to treat. I’m not saying they do not work. They will certainly mask symptoms in most cases and for some they work great and the buck stops there. For others the journey only begins here and the options are varied and endless. DO YOUR RESEARCH. Do not take my word for it. I highly suggest that you look at research especially from valid, scientific resources and medical journals. I will include some of my favorites from time to time, but this does not in any way mean that I think any of these resources are the end-all be-all for resources on the subject, nor do I think any of them are replacements for medical advice.  

You will find there are a wide variety of opinions from doctors and from patients whom have been down that road. I’m not going to say that any of them are wrong, in fact I might venture to say that they are all right… I say this and what I mean is that what is right for me may not be right for you and vice versa all I can tell you is my story and that I am still on my journey. I am hoping for a complete remission one of these days. I hope that some day I can tell you that I feel 100% ++ with the types of health care I have chosen to manage my particular case of Hashimoto’s along with the cluster of autoimmune diseases that I have been diagnosed with. 

Stand up for yourself. Read, read and then read some more. Ask questions about everything even if you think they are stupid questions. Trust me and trust your gut instinct, there are no stupid questions when it comes to your health and if your practitioner treats you like you are stupid for asking or brushes your questions under the carpet, then that is a pretty clear sign it is time to think about moving on or at least having a serious discussion with your practitioner about the manor in which they are handling your care. You have only one life. When it comes down to it you need to be in the driver seat with some good guidance to follow… again, trust your gut instinct. You are the expert on you. Find a new practitioner if you do not think you are on the path you should be with your current practitioner… but figure out when you have found a good one or even a great one (they do exist) and give your best efforts to try what they are suggesting and have a little faith that what they are suggesting just might work. Realistically not everything you try will work. There will be failures and you need to get used to this, but celebrate the successes no matter how small or big. Each one is big in my book because it takes so much effort for even the smallest success in a Hashimoto's/AutoImmune-world.