5 Most Frequently Asked Questions Upon Diagnosis of Hypothyroidism

This is a guest post written by thyroid patient advocate and author, Rachel Hill of The Invisible Hypothyroidism.

  1. What is hypothyroidism?

Hypothyroidism, also called an underactive thyroid, is a condition where the thyroid gland does not create enough thyroid hormone/s. These hormones are needed for every process, every cell and every function within the body, so when they go wrong i.e. are too low, a lot of other stuff can go wrong too, leading to many symptoms. These can include metabolic function, sensitivity to heat and cold intolerance, muscle aches and pains, fatigue, adrenal problems, vitamin deficiencies… the list goes on.

The main purpose of thyroid hormones, produced by the thyroid gland, is to ensure the metabolism is running properly. The metabolism’s job is to produce heat and fuel. Heat to keep us warm and fuel to give us energy. Now, if we don’t have enough thyroid hormones, our metabolism won’t work properly and so can’t provide us with adequate heat and fuel.

Therefore, people with an underactive thyroid or hypothyroidism, often have a slow metabolism, with symptoms associated with a slow metabolism, such as cold intolerance (from the lack of heat made) and extreme tiredness and weight gain (from the lack of calories burned to make energy).

Ultimately, once thyroid levels are optimal it tends to mean that the hypothyroidism is being optimally treated, so most symptoms should start to disappear, but support for other possible problems like vitamin deficiencies and adrenal fatigue will need to be in place until they recover, too. On-going monitoring to maintain good thyroid levels are important, which should also help keep vitamin levels and adrenal gland function in check, too, along with any other associated conditions.

2. What is Hashimoto’s and do I have it?

Hashimoto’s thyroiditis, more often referred to as just Hashimoto’s is an autoimmune disease and considered to be the most common cause of Hypothyroidism (at around 90%). Therefore, many people with hypothyroidism also have Hashimoto’s.

To know if you have Hashimoto’s, you need two tests: TPOAB (thyroid peroxidase antibodies) and TGAB (thyroglobulin antibodies). Having Hashimoto’s will usually show as TPOAB and TGAB test results being above range, although it is believed that 10% of people with it don’t show on tests at all.

Hashimoto’s often leads to hypothyroidism as it causes the body to attack and destroy the thyroid gland, causing low thyroid hormone levels as the thyroid glands begins to dysfunction from the damage caused. As time goes by, if this autoimmune disease is not well controlled, your own body continues to attack and destroy the thyroid as if it is an enemy, which can cause levels to gradually get worse and worse, meaning further increases in thyroid medication dosage and worsening symptoms.

3. What medication options are there?

To understand the various options, it’s important to know that a healthy thyroid gland would be giving you five hormones: T1, T2, T3 (active thyroid hormone), T4 (stored thyroid hormone) and Calcitonin. So, you can see why it may be beneficial to take a thyroid medication that replaces all or at least the two most important (T3 and T4) of these thyroid hormones, when our thyroid glands go caput and we develop hypothyroidism.

T4-only Medication

T4 medication is the most prescribed and does work for many people, but not all. While some people do respond well to synthetic T4-only medications, such as Levothyroxine and Synthroid, many other thyroid patients fail to convert the T4 into T3, so when they take T4-only meds, they still feel unwell.

T3-only Medication

Instead of being on T4-only, you could be on synthetic T3-only medication which skips the need for T4 to T3 conversion, but as you have no T4 (the storage hormone) to convert to T3 for you, it may need dosing more often, such as 3 or even 4 times a day. Still, many thyroid patients do feel an improvement over being on T4-only medication alone.

T3 and T4 Combination

There is also the option of taking both synthetic T4 and T3 together, to try and mimic more closely what the thyroid gland would be producing, if it were working properly.

NDT

Natural Desiccated Thyroid (NDT) is most often dried porcine (pig) thyroid gland (bovine over the counter does exist) and gives you all of the hormones your own thyroid would be giving you; T1, T2, T3, T4 and Calcitonin. NDT also removes the need to rely on the body converting hormones.

Compounded Thyroid Medication

Compounded thyroid medication offers the advantage of being made without any fillers, which can be useful if you do not tolerate them well, such as gluten or lactose. The amounts of T3 and T4 are usually similar to NDT, but doctors can order for the amount of each to be adjusted to make the exact dosage your own body needs. It is essentially more personalised. This can be the answer for those who do not feel well on synthetic T3, T4 or NDT medications.

The best thyroid medicine is the one that works best for that particular person.

4. Do I need medication for life? Is there a cure for hypothyroidism?

The quick answer is yes, there is a small chance it can be cured. However, the important thing to be aware of is that for most, it is not curable. It’s down to the cause for your hypothyroidism in the first place.

Now, autoimmune thyroid disease (Hashimotos’) can’t be cured, but many say that it can be put into remission. And as of February 2019, mine is in remission.

You may find online influencers or those on social media claiming that they ‘cured’ their Hashimoto’s, but this isn’t possible. Autoimmune hypothyroidism, Hashimoto’s, stays with you for life. There is no way to cure yourself of it. You can manage it and/or put it into remission but you’ll always have it.

Simply put, ‘remission’ means that the Hashimoto’s becomes very well controlled, with lowered to zero antibodies, and for some people, they don’t even need thyroid medication any more. They can manage their autoimmune thyroid disease through diet and lifestyle and halt the progression of it. Though I must stress that it seems somewhat rare and most of us require thyroid medication for life due to how much damage has already been done to the thyroid gland’s function.

The other people with hypothyroidism, without Hashimoto’s, can ‘theoretically’ cure their hypothyroidism. This is because their hypothyroidism is due to non-autoimmune issues, such as an environmental issue, for example:

  • A diet low in iodine
  • A Vitamin D or other vitamin/mineral deficiency
  • Over consumption of soy
  • Mould exposure
  • Too much oestrogen
  • Viral infection/s
  • Pregnancy etc.

By removing or ‘fixing’ this issue, the hypothyroidism could theoretically be cured.

For others, they can’t fix their non-autoimmune cause for hypothyroidism, e.g. a problem with the pituitary gland which can interfere with thyroid hormone production, or a thyroidectomy which can include all or some of the thyroid gland being removed, thus preventing the right amount of thyroid hormone needed, being produced naturally (without thyroid hormone replacement).

For many though, they don’t know what’s causing their non-autoimmune hypothyroidism.

So yes, hypothyroidism can be ‘cured’, just not very often and not for most of us. For most of us, it’s much more beneficial to look at managing our hypothyroidism as best we can, without focusing too much on ‘getting off of meds’ or ‘finding a cure’. Thyroid hormone replacement is to us as food and water is a regular, healthy person. We need it to survive.

5. Will I ever feel normal again?

A thyroid disease diagnosis doesn’t have to feel like a death sentence. You can still live a good quality, full life with hypothyroidism. It may take some trial and error, tweaking of medication, dosage and other lifestyle changes and adjustments but you can get back to good health.

One of the most important things you can do for yourself is to find a good practitioner. An endocrinologist, GP, functional practitioner, naturopath etc. or even a combination, can help you on your way to recovery. Thyroid patients find that some types of medical professionals are better than others when it comes to treating and managing their hypothyroidism, but it’s up to you to find what works for you and your health.

You need to make it a priority to find what you need in order to get better, so get reading up on research and educate and empower yourself to become your own health advocate. It’s not ideal, but many thyroid patients are doing this these days, including myself. We learn how to interpret our own lab tests, ordering our own tests (which may not be as expensive as you think), exploring new medication options and supplements or lifestyle/dietary changes. It is always best to do this with a medical professional however.

Reading up on hypothyroidism and related conditions in books, articles, medical journals etc. will give you the knowledge you need to become your own advocate and make some changes. You’ll feel empowered and more in control of your health, too.

Living a full life also means having a good social and support network around you, to help when the times get tough and provide emotional and physical help and support. Friends, family, neighbours, coworkers etc. should all be able to offer some kind of support or help to you and you’ll need to learn to utilise this.

Gentle exercise can also be enjoyable and give you a sense of a full, active life and get you out of the house. Many people with hypothyroidism enjoy gentle walks, yoga, pilates and swimming. Getting some fresh air and a change of scenery can be very beneficial. Just be sure to listen to your body and take it at your own pace.

So, how long after starting thyroid hormone replacement medication, will it take for you to get back to how well you used to feel? I wish I could tell you. I really do.

The thing is, it’s different for each person. Why? Because the point at which we finally get that diagnosis and the medication that our body so desperately needs, is commonly so late in the progression of the condition, that we also then have other issues that need addressing too.

You see, whilst some people take their medication and within a few weeks feel great, many of us (and I would hazard a guess that most of us) don’t feel loads better this quickly. But please don’t fret, because you can feel well again. Not all is lost.

It just takes time to address what’s going on inside your body.

Each person’s ‘thyroid journey’ is very unique. Some people find that their first try of thyroid medication alone does very well to bringing them back to good health, but for others, they find that they either require medication dosage adjustments (i.e. the initial dose of medication given isn’t enough), a switch to a different type of medication (many patients do don’t well on T4-only Levothyroxine and Synthroid, but do better on T3 and NDT medications) and/or some further help or problem solving in other areas.

It is possible to live a good quality, full life with hypothyroidism however, but each person needs to piece together their own thyroid puzzle to figure out what needs addressing to get them there and restore their health.

So, how long will it take for you to feel well again? It’s going to depend on how many aspects you need to fix/address, how well you take control of your health and advocate for yourself and how your individual body reacts and adjusts. For some it takes longer and for some quicker. Do also bear in mind that, often, the longer you’ve been unwell without diagnosis and medication, the more likely you’ll have more issues to address, as untreated hypothyroidism/Hashimoto’s sends other things out of whack over time.

Written by Rachel Hill, Thyroid Patient Advocate, Writer and Author

Author Bio:

Rachel Hill Gask

Rachel Hill, a highly ranked thyroid patient advocate, writer and author, created the award-winning advocacy and website: The Invisible Hypothyroidism. Diagnosed with Hypothyroidism and Hashimoto’s, she talks openly and honestly about what it’s like to have these and what has helped her and many others to recover their health and thrive with thyroid disease. She is passionate about helping those with hypothyroidism and giving them a voice, and is well recognised as a valuable contributor to the thyroid community. 

Rachel’s work can be found on her twitter, facebook, instagram and website, as well as in her book; Be Your Own Thyroid Advocate.

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