Born without Thyroid : Good morning, I was born... - Thyroid UK

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Born without Thyroid

TrippinGypsie profile image
21 Replies

Good morning,

I was born without a thyroid and have been on different versions of thyroxine my entire life. Due to this impairment and it's affects on my development I was born (3 weeks late) without my thyroid and significantly underdeveloped on the entire right side of my body, no inner ear canal in my right ear, 2 extra ribs, and numerous other things. This is where the term Cretin comes from.

Anyhow, over the years I've been diagnosed with Fibromyalgia, severe anxiety and depression, myofascia pain syndrome, and a couple others I'm at a loss to their names. At one point I was on way too many medications and started investigating natural remedies for my ailments as addiction and alcoholism are prominent in my family tree and I don't like putting chemicals that I know nothing about into my body.

I've recently begun taking chemistry and biology at school and I'm working on getting a degree in naturopathic psychology.

I have been questioning for years if it is possible for me to live without it (and I've just started studying the medication itself) and I'm looking for thoughts or experiences of people who do not have a thyroid and have who have gone without medication for a significant amount of time.

I've had periods where I've gone without (months to a year) but I was also not healthy or in as good a place I feel I am at today. I've gone from medications for all these diagnosis and now I have this one left.

Thank you for your time

Trippingypsie

xo

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TrippinGypsie
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21 Replies
Nanaedake profile image
Nanaedake

In a way, Levothyroxine is not really a medication, it replaces thyroxine, a hormone produced naturally by the thyroid and essential to every cell in the human body. Without thyroxine humans die, that's why we get our medicine free on the NHS.

Going without Levothyroxine is not a good idea as critical organs in the body need a good supply, such as heart and brain. I hope you enjoy your studies.

TrippinGypsie profile image
TrippinGypsie in reply to Nanaedake

I'm from Canada and I have to pay for my medication.

I'm still a beginner and so far I'm loving it thank you :)

I wonder if there are more natural options to get what I need. I'm working on listening more closely to what my body tell me what it needs (which is working well thus far)

Thank you so much for the information!

in reply to TrippinGypsie

Of course there is. But in Canada we only have one brand of NDT (natural Dessicated Thyroid) 😤 so it is limiting if one doesn't respond well to it... that's ERFAs Thyroid BTW.

So if you give it a try do your research first. Other brands are available thru the US and elsewhere via online pharmacies. Many people try 2-3 brands before finding the right fit. Some have fillers that cause problems, but everyone is different and it is a bit of trial and error.

A link for some reading on NDT, as well I have posted one clinical study.

stopthethyroidmadness.com/n...

ncbi.nlm.nih.gov/pubmed/235...

Note that back in the day it was the only treatment available but was eventually replaced by Big Pharma synthetic versions. As a result the medical establishment has been brainwashed that NDT is an unreliable and out-dated treatment. So why do so many people do poorly on Levo and respond well to NDT, huh?

If you are a critical thinker (good thing to possess as a student) you will find the reading interesting. And there loads more stuff out there. X rusty

TrippinGypsie profile image
TrippinGypsie in reply to

Thank you so much for all the awesome information! xo

TrippinGypsie profile image
TrippinGypsie in reply to

What is Erfa please?

The_will_of_Jill profile image
The_will_of_Jill in reply to TrippinGypsie

Natural desiccated thyroid treatment in Canada. I think they also simply call it 'Thyroid'

Many people get better results with NDT instead of the synthetic kind. Which is what you've been taking.

I don't live in Canada but I have heard people complain that ERFA thyroid is not as good as some of the other kinds.

I think there are ways of getting them from other countries though. I just recently started taking WP Thyroid. It's supposed to have the least amount of fillers. (I was taking Synthroid before, which is name brand Levothyroxine)

I'm in US though.

RLC labs makes Naturethroid and WP Thyroid.

Good luck 🌸🦋🌸

TrippinGypsie profile image
TrippinGypsie in reply to The_will_of_Jill

Thank you :)

EbonyEvans profile image
EbonyEvans

Thank you for sharing with us. I love that you're so positive about life and have taken as much control as possible. I am assuming you are in your teens as you mentioned school. I have ever faith you while be a great member of society and look forward to your updates hopefully on this forum.

Have a great weekend. Ebony xox

TrippinGypsie profile image
TrippinGypsie in reply to EbonyEvans

Thank you Ebony.

I actually just turned 34 last week :)

TrippinGypsie profile image
TrippinGypsie in reply to TrippinGypsie

University.

EbonyEvans profile image
EbonyEvans in reply to TrippinGypsie

Belated happy birthday!

My comment was a positive one as I was shocked at your grammar if you were a teenager! The school but threw me.

Stay wonderful

Exox

EbonyEvans profile image
EbonyEvans in reply to EbonyEvans

I'm from the U.K. And school refers to 4-17 year olds.

TrippinGypsie profile image
TrippinGypsie in reply to EbonyEvans

Thank you xo

I had a penpal from England for many years. I forgot the different grading system. I call any education school for simplicity.

humanbean profile image
humanbean

if you want some shock therapy on what can happen without sufficient thyroid hormones, and why thyroid hormones are so important, you could read this ancient article about the problem from the very early days of the NHS in the UK when there would have been a lot of people with hypothyroidism who had been left entirely untreated :

ncbi.nlm.nih.gov/pmc/articl...

It's the article entitled Myxoedematous Madness.

---

There are three different kinds of thyroid hormone available to patients, but many doctors are only happy to prescribe Levothyroxine (T4).

There is also liothyronine (T3). It can be taken alone (not a popular choice, but works for some people), or it can be taken with Levo (the combo is more popular).

Both T4 and T3 are synthetic and were developed in the laboratory.

There is also Natural Dessicated Thyroid (NDT). The active ingredients of this are made from pig thyroid, and the tablets contain both T4 and T3. Many people, particularly doctors, know this as "Armour", but Armour is a brand name. There are several other brands of NDT available. Armour is the most expensive NDT in the world, I believe, and isn't any better than the cheaper ones.

NDT is also sometimes taken in combination with either T4 or T3, which works for some people.

TrippinGypsie profile image
TrippinGypsie in reply to humanbean

Thank you for all the great information :)

TrippinGypsie profile image
TrippinGypsie in reply to humanbean

Thank you for all the great information xo

Clutter profile image
Clutter

Trippinggypsie,

There is no alternative to thyroid replacement. You may manage a few months without replacement but you will be damaging your vital organs - heart, kidneys, liver and brain - and there will come a point where the damage is irreversible even if you resume replacement.

Prior to thyroid replacement it was estimated that time from diagnosis to death was 12 years. Most hypothyroid patients became psychotic and ended their days in asylums.

ncbi.nlm.nih.gov/pmc/articl...

patient.info/doctor/myxoede...

If you don't care for synthetic Levothyroxine then ask whether you can be prescribed Erfa. Erfa is natural dessicated thyroid. The 'natural' refers to T4 and T3 derived from dessicated pig thyroid. The rest of the tablet contains synthetic fillers as ingredients in tablet forming and production.

I had a thyroidectomy and had several occasions where I had to stop replacement. The last time I was 4 weeks without replacement and was still ambulatory but had crushing fatigue and was cold to the bone. Most of my time was spent in bed. My TSH rose to 107.5 with both FT4 and FT3 below range. It took eight weeks to restore levels and the worst symptoms to resolve and another 4 months for hair shedding, skin shedding like confetti and nails splitting to stop.

shaws profile image
shawsAdministrator

If you were born without a thyroid gland I would have thought the most kindly way of treating a child would have been to prescribe a Natural Thyroid Hormone (NDT for short). It has all of the hormones a healthy gland would have produced and I wouldn't have expected you to have other diagnoses like fibromyalgia. NDT contains T4, T3, T2, T1 and calcitonin (good for bones). Levothyroxine contains T4 only.

We cannot live without thyroid hormones and as you never had one, you would never know what it is like to be really healthy.

Thyroid hormones are not drugs but replacement hormones and needed by our brain most of all, followed by heart and other organs and in fact by our billions of receptor cells.

NDT(also called natural dessicated thyroid hormones) is made from pigs thyroid glands and have been in use in various forms since 1892 up until recently when the Endocrinology decided the preference for levothyroxine alone (i.e. T4 only).

Our body needs T3 to function. T4 (levothyroxine should convert to sufficient T3 but doesn't always).

Endcrinologists come up with some weird stories that if our TSH is very low or suppressed we'll get osteo or heart problems. In fact if we are undermedicated we will develop these. People who have had thyroid cancer and have their glands removed have to have a suppressed TSH so I have never read any reports of theses people dying.

I hope your research is fruitful but 'no' we cannot live if we don't have thyroid hormones. They are need from head to toe.

TrippinGypsie profile image
TrippinGypsie in reply to shaws

My doctor has refused to send me to an endocrinologist. I have recently gotten a new doctor who seems to want to help, thank goodness.

Thank you greatly xo

I'm overwhelmed with everyone's great feedback

shaws profile image
shawsAdministrator

Some links for you to read and get some knowledge. This doctor died through an accident but he hated that people suffered unnecessarily due to the modern method of diagnosing/treating.

web.archive.org/web/2010103...

There are other topics at the top of the page (some may not work as it is now archived).

web.archive.org/web/2010103...

web.archive.org/web/2010103...

He was an Adviser to Thyroiduk.org.uk and was also Chief of Fibromyalgia Research Centre.

His fibromyalgia patients only became pain-free when they took T3 (liothyronine) only as their bodies were thyroid hormone resistant and only T3 worked, not T4.

TrippinGypsie profile image
TrippinGypsie in reply to shaws

Amazing :)

Thank you

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