Having been through the ups and downs of having hypothyroidism, I now feel comfortable talking about many aspects of it. When people join my Facebook group, and ask all the expected questions when they’ve just been told they have an underactive thyroid, I first send them the link to this page, which is full of lots of helpful answers and FAQs, but I also tell them the essential things to know, below.
I hope this helps those of you who are just diagnosed. Please pass it on to friends and family who become diagnosed, so we can continue to help each other.
- All those symptoms and separate conditions you have, could be from your thyroid.
Yep. Did you know that there are over three hundred known symptoms and related conditions from hypothyroidism? Your fibromyalgia, chronic fatigue, acid reflux, low blood pressure and depression, to name just a few, can be from an inadequately treated thyroid condition. So once you get this properly medicated, with optimal thyroid levels, they may well go away or get better. Read more here.
- Your thyroid is located in your neck and is important for many bodily functions and processes.
None of us really know where the thyroid gland is or what it does when we’re first diagnosed, so this is important to learn. The thyroid gland is located in the neck and its main purpose is to produce thyroid hormones 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. So 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 have a slow metabolism, so will have 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).
- 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 is inaccurate on its own. You also need Free T3 and Free T4 testing too, and Reverse T3 and TPOAB and TGAB if possible as well. Read more here.
- There is a great, supportive community out there.
So many people feel alone with thyroid disease. This condition can make you feel depressed, lonely 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 this and underestimate it. Therefore, you should reach out to those of us who do understand. There are many online support groups and forums, who can be supportive, helpful, give advice and share their experiences with you, as well as be there to listen when you need to rant about a bad day.
- T4-only medicine, such as Synthroid and Levothyroxine are not the only medication options.
Although many doctors won’t tell you, or do not know themselves, T4-only medication doesn’t work for some people and so they require T3 or NDT to feel better. Although getting your thyroid medication dosage right can take months, if you still feel unwell after quite a while, you need to explore this further and complete a full thyroid panel, testing Free T3 and T4 to check if you’d be better on another thyroid medication.
- Pick up books.
There are many thyroid books out there that are brilliant. Many are written by doctors, functional practitioners or thyroid advocates, and are a must-read for all thyroid patients. I review the books I read, and many have got me better.
- It’s worth researching about adrenal dysfunction.
It has been estimated that 60-70% of us with hypothyroidism also have some degree of adrenal fatigue, so it’s worth exploring the signs and symptoms of this condition, so you can act to treat it as soon as possible. For many people, adrenal fatigue symptoms end up being half the problem, and they can’t get better on thyroid medication without working on their adrenals as well.
It is estimated that 90% of us with hypothyrodiism have the autoimmune disease Hashimoto’s Thyroiditis, which is what is causing our thyroid to fail. It’s often really helpful to confirm if we 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 TGAB and TPOAB to confirm if you have this. Read more here and here.
- It’s OK to have bad days.
This condition is not easy to live with. Not at all. It’s OK to struggle, it’s OK to admit that you can’t do as much as you used to, and you need to accept this now, before you carry on beating yourself up about it. You need to do your best to get family, friends and colleagues to understand that with this new diagnosis, you may struggle sometimes, be forgetful or not feel up to things, and you’re not to blame. Accept it, own it and respect it, and others will start to, too.
- You can get better.
You may have read other peoples’ experiences online about how they never feel well again, and start to worry. I certainly did! But don’t let this depress you; you can get well again. The above mentioned points need to be considered and you’ll need to be your own thyroid advocate in order to get better, but it’s not all bad. Empower yourself and become educated on your health and push for answers. It won’t always be easy but you owe it to yourself. Buy books, get other patients’ experiences and don’t let doctors fob you off. If you can find a good doctor or endocrinologist then even better.
There’s lots of other helpful info on this site for you to check-out when you feel up to it, too.
You can click on the hyperlinks in the above post to learn more and see references to information given, but more reading and references can also be found at:
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I run a Facebook group, called Thyroid Family: Hypothyroidism Advice & Support Group. This group is for underactive thyroid/hypothyroidism patients only, and not medical professionals or anyone else. If you have any questions on living with hypothyroidism, or want some support, help or advice, please join us.
I also run a group for the spouses, partners and other halves of hypothyroid patients, called Hypothyroid Patients Other Halves – Support & Advice Group. This is for the other halves only and not patients.