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Top 6 Pieces Of Advice I’d Give To A Patient Newly Diagnosed With Hypothyroidism

This is a guest post written by Rachel Hill, creator of The Invisible Hypothyroidism, an award-winning patient advocacy blog that focuses on helping others by advocating for a better thyroid disease diagnosis and treatment.

Let’s face it, receiving a new diagnosis for a lifelong chronic health condition is scary.

Many thyroid patients leave their doctor’s office, new prescription medication in hand –  they’re told, for life – yet not much more about this new diagnosis.

In a day and age where doctors are now more pushed for time than ever, limited in terms of budgets and are overworked, many thyroid patients leaving their offices with a diagnosis of hypothyroidism, or an underactive thyroid as it’s also known, aren’t always equipped with the best knowledge or advice to deal with this.

As I heard my suspicions confirmed by the doctor, who gave me the diagnosis of autoimmune ‘subclinical’ hypothyroidism so casually, I actually felt relieved.

I finally had an answer.

It was confirmed that I wasn’t mad. But at that appointment I was just given a medication I was told I’d be on for life and then sent on my merry way, unaware of how untrue a notion it is that we only need this one, tiny pill to treat our condition and all will be well again.

We’ll be back to our old selves in no time.

Almost three years on from diagnosis, having now been through many ups and downs of having hypothyroidism and learning how to live with it, I can talk about various aspects of it and I feel there are many important points that should be raised for those newly diagnosed, but also those who may have had their diagnosis for years but, in the sense that they’re only now starting to really understand what this condition means, are beginning their journey of understanding as if it’s new.

  1. Your thyroid gland is located in your neck and is important for all bodily functions.

None of us really know where the thyroid gland is, what it does or why it’s such an important organ when we’re first diagnosed.

Thyroid’, I thought when the doctor said to me that it was under active.

How do I even spell that?!’

But the thyroid gland produces hormones, namely T3 and T4, which are required by every cell and organ in the body.

Thyroid hormones’ main purpose is to regulate the metabolism, the chemical processes that, quite simply, keep us alive. Though perhaps most well known for the way it is involved in weight loss, the metabolism’s job is to produce heat and fuel; heat to keep us warm and fuel to give us energy.

Energy not only to carry out our day to day tasks but even just to exist. If we don’t have enough thyroid hormone, our metabolism doesn’t work properly and so can’t provide us with adequate heat and fuel, which not only leads to weight gain, but also cold intolerance, extreme tiredness and a whole host of other symptoms.

The brain, heart, muscles and all systems within the body require these crucial hormones. Hence, when we don’t have enough, symptoms can range from brain fog to muscle pain, hair loss to skin complaints, low blood pressure and even infertility or pregnancy complications.

That’s quite a lot of responsibility for one little gland, huh?

  1. Due to thyroid hormone being needed by so much, all those symptoms and separate conditions you have, could actually be from your hypothyroidism.

Well, it makes sense. Your Fibromyalgia, Chronic Fatigue Syndrome, Anxiety, Depression, Acid Reflux, GERD and high cholesterol, to name just a few, could actually be from your thyroid condition.

Of course, once you get it properly medicated, with optimal thyroid levels, they often go away or improve greatly.

This was true for myself who, leading up to diagnosis, had a growing list of concerning health conditions and complaints, ranging from painful muscle cramping and spasms in my legs to cystic acne as a full grown adult, irregular periods, acid reflux, Chronic Fatigue Syndrome, recurring anemia and even deteriorating teeth, all of which either improved greatly or disappeared altogether once on Natural Desiccated Thyroid medication.

  1. There is a choice of thyroid medication.

Although many doctors won’t tell you, or aren’t aware themselves, T4-only medication isn’t the only medication for treating hypothyroidism, and in fact, doesn’t help all thyroid patients.

As a healthy thyroid gland would produce all five hormones that your body needs (T1, T2, T3, T4 and Calcitonin), many people do best on a thyroid medication that includes all of these.

However, many mainstream doctors believe that we only need to replace the T4, as we only require tiny amounts of T1, T2 and Calcitonin anyway and our body should convert some of the T4 we put in to the T3 that we need, and this seems simple enough, right? Wrong.

While some people do do well on T4-only meds, many other thyroid patients fail to convert the T4 into T3, so when they take T4-only meds, they still feel rubbish.

Now, don’t get me wrong, I’m not suggesting that T3-only and Natural Desiccated Thyroid are the only medications worth taking due to containing that active T3, as it really comes down to what works for the individual person.

But the problem is that many doctors simply will not consider anything other than T4-only medication, something that’s been around since the 1960’s, when NDT has been used for over a hundred and fifteen years.

It also makes sense that many people will do better on a natural, not synthetic product, that gives them a much closer representation of what their own thyroid would be giving them.

So, do bear that in mind, should your T4-only medicine not be working for you and, if you have the option of various thyroid medications upon diagnosis, most would think it makes most sense to go for the one that resembles most closely what your own thyroid is failing to produce.

I started on T4-only medication Levothyroxine and lasted all of five months before switching to NDT and not looking back. On T4-only medication, my symptoms carried on growing, and at an alarming rate. It was clear that I was one of the many that don’t convert T4 to T3 and within just a few weeks on being on NDT, I was amazed at how much better I already felt.

  1. Make sure your doctor doesn’t just test TSH.

This one is so important. You can’t expect to get better again if your doctor is just testing TSH, because it’s inaccurate on its own.

TSH is a hormone produced by the pituitary gland. It sends a signal  to the thyroid gland, telling it how much thyroid hormone to produce. The thyroid answers this signal by releasing the correct amount of thyroid hormone as per the pituitary’s orders, therefore, when TSH is low, it indicates that the pituitary isn’t having to give too many orders to the thyroid gland which often means it’s doing an adequate enough job.

However, in a person with an underactive thyroid, the pituitary gland works harder as the thyroid is failing to keep up with the demand, so TSH rises.

This is where a high TSH can be indicative of an underactive thyroid.

Theoretically, if you put the hormones your thyroid is failing to produce, in to your body, the TSH will come down as the pituitary doesn’t need to scream at the thyroid so much. But there is a hole in this. Having a ‘fine’ TSH is one thing, but your body actually performing properly and using the hormones effectively is another.

TSH is a pituitary hormone, not a thyroid hormone, so it does not tell you your actual thyroid hormone levels or what is being used on a cellular level, so when used alone, TSH gives an inaccurate indication.

Therefore, you need to be going by Free T3 and Free T4 levels, the measurement of actual free thyroid hormone, available to the body for its many functions.

For a long time, I was denied thyroid medication due to a TSH that was ‘fine’ (actually way above optimal levels at five or six), but when my Free T3 and T4 was actually tested, they were at the bottom of their ranges. When they rose to midrange for T4 and near the top of the range for T3, I felt so much better.

Please do not go by a pituitary hormone alone for a thyroid issue.

  1. It’s worth knowing if your hypothyroidism is autoimmune.

It is estimated that 90% of us with hypothyroidism have the autoimmune disease Hashimoto’s Thyroiditis, as the culprit, an autoimmune disease which causes the immune system to attack the thyroid gland, resulting in a loss of production over time.

It’s often really helpful to confirm if you do indeed have Hashimoto’s, as certain things can help to keep it under control and lowering antibodies is often cited to help in symptoms such as brain fog and fatigue.

You need the tests for thyroid antibodies, TGAB and TPOAB, to confirm if you have Hashimoto’s.

I feel lucky that I was diagnosed with Hashimoto’s at the same time as ‘subclinical hypothyroidism’, although admittedly, I didn’t know what it meant. After a lot of research, I decided to go gluten free as many patients claim it helps manage their condition and boy were they right.

Since going gluten free I have less fatigue, less brain fog, no joint pain and a lot less cystic acne.

  1. There is a great, supportive community out there.

The World Health Organization estimates that 750 million people in the world have some form of thyroid disease, including 1 in 20 people in the UK and more than 12 percent of the U.S. population developing a thyroid condition during their lifetime.

Many people feel alone when living with hypothyroidism, a condition that can make you feel depressed and isolated.

The huge impact it has on every aspect of our lives can be devastating, and those who do not have it often don’t understand.

Therefore, reaching out to fellow thyroid patients can be very reassuring.

Online support groups and forums offer support and advice that are a great help.

Rachel Hill, The Invisible Hypothyroidism

Diagnosed with Hypothyroidism, Hashimoto’s Thyroiditis and Chronic Fatigue Syndrome (ME), as well as having Adrenal Fatigue and experience with Depression and Anxiety Disorder, Rachel Hill is an advocate for better diagnosis and quality of life for hypothyroid patients and writes at the award-winning thyroid patient advocacy blog theinvisiblehypothyroidism.com, covering all aspects of what it’s like to have these conditions. Rachel is one of the many faces of thyroid disease and she’s passionate about helping those with hypothyroidism and giving them a voice.

You can follow Rachel on Facebook, Instagram, Twitter, Pinterest and Google
She’s also writing a book. Sign up to the updates list so you’ll know when it’s ready to purchase, here: http://book.theinvisiblehypothyroidism.com/

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