Living with Hypothyroidism

What is it?

Well, before I even start I think its important to define what Hypothyroidism is. I had vaguely some knowledge of it before I was diagnosed but that may have been because I did a medically related degree and I have no idea how much information is out there.

What is Hypothryoidism?

Thyroxine is a hormone (body chemical) made by the thyroid gland in the neck. It is carried round the body in the bloodstream. It helps to keep the body's functions (the metabolism) working at the correct pace. Many cells and tissues in the body need thyroxine to keep them going correctly.

Hypothyroidism means that the thyroid gland does not make enough thyroxine. It is often called an underactive thyroid. This causes many of the body's functions to slow down.(www.patient.co.uk)


I had no idea that I had Hypothyroidism - the idea that I may have an autoimmune disease did not even occur to me.... I mean, who sits around thinking - "I may have an autoimmune disease!".

Until recently I didn't even realise there was anything wrong. That may, or may not, sound weird. How can someone not know they are ill? But its true. Many of the symptoms I now know to be due to the disease I just thought were character faults in me or personality defects. Which, let me tell you, made for a very tough time and led to a lot of self-hate.

What are the symptoms of hypothyroidism?

Many symptoms can be caused by a low level of thyroxine. Basically, everything 'slows down'. Not all symptoms develop in all cases.

  • Symptoms that commonly occur include: tiredness, weight gain, constipation, aches, feeling cold, dry skin, lifeless hair, fluid retention, mental slowing, and depression.
  • Less common symptoms include: a hoarse voice, irregular or heavy menstrual periods in women, infertility, loss of sex drive, carpal tunnel syndrome (which causes pains and numbness in the hand), and memory loss or confusion in the elderly.

However, all these symptoms can be caused by other conditions, and sometimes the diagnosis is not obvious. Symptoms usually develop slowly, and gradually become worse over months or years as the level of thyroxine in the body gradually falls. (www.patient.co.uk)

I cannot remember most of my 20s very well. Sounds scary - well, it is. I really truly find it hard to think back and remember a lot of it clearly - the hows and whys of why I made a certain decision or took a certain action are blurred and indisctinct. I can now attribute this to my disease. But let me go back.

At some point in my early 20s I started putting on weight, I became very moody, very changeable and extremely prone to depression. I am normally a positive and optimistic person - I remember my dad always telling me not to be so idealistic. That changed somewhere but the change was so gradual I didn't even realise it.

I grew used to my bigger size and thought it was natural and blamed it on my genes and total lack of will power when it came to dieting - and even though I generally lead a very healthy lifestyle and ate healthy it didn't occur to me that my weight may indicate that something was wrong. I had always been plump and fat wasn't that far a stretch. Right?

I did not mind my size. I am a person who believes in living with who you are - and if others don't like it, they can lump it. However, it was never nice to go shopping when nothing fit or looked good cos it was all designed for people with tiny waists and no curves. But frankly, not the hardest thing in the world to live with.

As time went on, I became more and more prone to bouts of depression. As a Muslim, generally speaking depression should be a foreign concept to us. Islam teaches us to be positive and optimistic - to look at those less fortunate to us and count our many many blessings. Of course this doesn't work when there is an actual chemical imbalance in your body. Islam understands that - I didn't. It didn't occur to me that my depression may actually be a symptom of a disease - I just thought that I was a self-pitying and a rather pathetic person who liked to mope and feel sorry for herself. I HATED this side of myself - and the more I hated it the more bad and depressed I felt.

It got to a point where, God forbid, I even thought I'd like it all to end. I'm not a suicidal person - its forbidden in Islam, but sometimes I was in such a dark and lonely place - so full of depression - that if a bus drove over me while I was under my covers, huddled in the dark thinking morose thoughts, I may not have regretted it.

That was a very low point that lasted for far far too long.

I was tired. I spent years being tired. I was tired all the time. And no matter how much I slept I still felt tired. I remember one day I had enough and thought that since I was free for a few days (no work) I'd just sleep till my body had satiated itself on sleep and had enough rest - I figured once it had, I'd be back to normal. I slept 22 hours a day for the next 3 days. Nothing changed. I still didn't think anything was wrong - except that maybe I might just be the laziest person on God's green Earth.

I could easily sleep 15-20 hours a day - every day. I still felt tired. I really just thought that I was so lazy. Everyone else did too.

I had the flu for 5 years. Sounds very extreme but its almost true. I used to catch every bug going around and it literally felt like I had a cold or flu at any given time - I was rarely well. No one could believe how often I was sick - until they lived with me and then, they saw it for themselves. My body was tired and exhausted from infection after infection - a neverending cycle. It took me a couple of years to realise this was not normal. I had just supposed I had a crappy immune system!

I was so tired, so ill and so depressed that it affected my thinking. Everything slowed down - even my thought process. I felt sluggish and not myself. Most of all, I felt constantly indecisive. Making decisions was hard as I'd get confused cos I just didn't have enough energy to spare to think it through - so i'd just make a rash decision. Not good!! This lead to a lot of problems in my personal life. Again, I thought I was just bad at making decisions, indecisive and lazy.

I remember one incident very clearly - my dad and I were having a conversation, or rather he was talking to me and I was attempting to listen but I was tired (as usual) and just didn't have the energy and couldn't care less cos I was that tired. He asked me to make a decision and I just couldn't think. At all. I mean, there was just one great big blank inside my head and not a thought in it. He asked again and again and again and I just could think, let alone make a decision. In the end I just walked out without talking - crept into bed, pulled the covers over my head and slept.

Oh and I ached.Muscle cramps, general aches and pains that made my body feel heavy and old. Like it constantly had the flu - which it actually usually did!

All this - and I still didn't think I had a disease. Its only when I went to the doctor regarding the ahces and pains in my joints - they had gotten pretty bad - that she decided she ws going to do a blood test for my thyroid.

What causes hypothyroidism?

Autoimmune thyroiditis - the common cause

The most common cause is due to an 'autoimmune disease' called autoimmune thyroiditis. The immune system normally makes antibodies to attack bacteria, viruses, and other 'germs'. If you have an autoimmune disease, the immune system makes antibodies against certain tissues of your body.

With autoimmune thyroiditis, you make antibodies that attach to your own thyroid gland which affect the glands function. The thyroid gland is then not able to make enough thyroxine, and hypothyroidism gradually develops. It is thought that something triggers the immune system to make antibodies against the thyroid. The 'trigger' is not known.

In summary

  • Hypothyroidism is common.
  • Symptoms develop gradually. They may be confused with other conditions.
  • Treatment with levothyroxine tablets is usually easy and effective.
  • Treatment is usually for life.
  • Have a blood test once a year if you take levothyroxine tablets once your dose has become stabilised.

(www.patient.co.uk)


A video on The Effects of Thyroid Disease can be seen here.

Do I have it?

Well, have a look through the following questions:

- Are you Male of Female?

Females have a higher chance of getting Hypothyroidism, 1 in 500. As opposed to men, 1 in 1000.

- Do you have any family history of it, or goitre or other glandular problems?

Thyroid diseases can be genetic, so its good to be on the look out.

- Have you gained unexplainable weight? Even though nothing has changed in your diet or exercise lifestyle?

Classic sign.

- And when you gain weight and have gone on a diet, do you find it hard or even impossible to lose weight? Or even gained weight while on the diet?

Weight gain is another classic sign and its very difficult for most people with hypothyroidism to lose weight.

- Are you a smoker, or were you a smoker?

It does increase your chances I'm afraid!

- Do you have puffiness in you eyes, surrounding eyes, feet or toes?

Another possible sign.

- Do you find you crave sweet things or carbohydrates for than usual?

This can be a sign for hypothryroidism too - its all about needing more energy!

- Do you get shaky if you don't eat?

You run out of energy fast.

-Are you fatigued, lathargic,weak, sluggish and feeling run down?

I was!

- Do you wake up feeling tired no matter how much you sleep?

Another classic sign.

- Do you require more caffeine to keep you awake?

- Are you experiencing mood changes, depresion and/or anxiety?

I definitely did!

- Difficulty concentrating or remembering things?

Hello - still awake out there??

- Do you find your overly sensitive to hot and cold?

I was and still am somewhat. I have cold feet almost constantly and they get cold quite easily.

- Do you have unexplained joint or muscle aches?

Feel like you've got the "flu aches"? I know I did. On top of which, Hypthyroidism can mimic and make you feel like you have arthritis - I had lots of joint pains, especially in my hands and even in my toes.

- Is your hair dry, brittle or falling out? Is your skin dry?

My hair and skin were really dry when I was untreated.

- Are your nails brittle, breaking easily or growing slowly?

I never could grow my nails!

- Have your sleep patterns changed? Are you finding it difficult to sleep or suffering from bouts of unexplained insomnia?

I did - the rest of the time I'd fall asleep whenever I could!

- Do you feel like you're getting every infection going around? And that recovery takes forever?

Hypothyroidism affects your immune system and it can sometimes feel like you don't have one!

- Have you developed allergies?

I developed an allergy to rice! That was awful!!! 3 years I lived without my beloved rice! (now I'm eating it every opportunity I get!)


 Have the vague feeling that your always forgetting something??
Have the vague feeling that you're always forgetting something??

I have been diagnosed and have been on treatment for 6 months now and it had been AMAZING. I can think of no other word.

Its as if the whole world has once again opened up to me. Opportunities excite me, optimism no longer escapes me; I have energy! I have not had the flu yet!! Which is awesome in itself, frankly!

The treatment has made such a vast difference in my life and I am so thankful for it. I feel like a human being again and its always nice to know that I am not as pathetic or as lazy and nowhere near as self-pitying as I thought!

So if you have any of the above signs or symptoms and suspect that you may have this disease then please do get checked out by your doctor. Its such an easy treatment and so worth a little blood test.

It never occurred to me that I may have Hypothyroidism, no one in my family had it and as I mentioned - I thought it was all personality defects!

I still cannot associate myself with having a "autoimmune disease"  - it sounds so serious and so not "me"!! But I am what I am - and with the treatment, I feel more myself everyday! :-)

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Comments 6 comments

Jessica 6 years ago

Oh my. You just told my story. Creepy. I have a high-stress job, and generally lead a high-stress life. Because of that, I identified my depression as (does this sound familiar?) a character flaw. So, here I am, feeling crappy (my TSH levels are way off) and it was wonderful to read someone else's experience and know I'm not alone. The sensitivity to cold finally sent me screaming back to the doc (even that was dicey -- I live in Montana, and it does get REALLY cold here). And the blankness. Thank you for sharing the mind blank. I tried to describe it to others, but they just aaid that sort of thing is normal -- I know about that just-on-the-tip-of-your-tongue thing. That was not what this was, but I didn't (and still don't) know how to explain how I know it's different.

On a bit of a bummer note -- things were getting bad and I was at the max end of my antidepressant dosage. I finally insisted on more levothyroxine even though my levels weren't horrible (TSH at 2.97). And then there was this lump on my neck. Had an ultrasound. The doc said there were actually three lumps, but let's wait six months and watch it. Yeah well, I'm not really a wait and see kinda girl -- plus, right now, I have health insurance coverage from two sources. My first thought was let's do the fine needle biopsy. Then I discovered it can be difficult to get a sufficient sample when lumps are small (the one of most concern was only 8mm). Now, I did a LOT of research and the chances of my lumps being cancer was about 5%. But, when you're prone to depression, insomnia and stress, you tend to trot out that 5% in the wee small hours of the morning and scare yourself silly. So, I went one step further and told the doc I wanted to remove the lumps. Since they don't really do lump-ectomies on the thyroid, he said I'd have to lose the whole right lobe. I thought about it -- I'd have a wicked cool scar as a talking point and certainty about the possibility of cancer. There's a lot to be said for certainty when you have other emotional struggles going on in your life.

Long story short -- it was a good thing I did the surgery. Two of my three lumps were cancerous (papillary carcinoma), and it has spread into at least one lymph node -- how much more than that, I have no idea. It'll take some more work with the surgeon and oncologist to figure that out.

BUT... if you gotta have cancer, it's a good cancer to have. And, I am incredibly grateful that I decided to be high maintenance and insist on the more drastic route. I can't imagine how I'd feel if I found out about the metastasis six months from now -- I'd have always wondered if it spread during that time.

I will get through the cancer and I'm sure this is all a great character-building exercise. However, more than anything (and how awful is this?), I am so incredibly relieved to find out that the root of my problems really is physical. Getting the thyroid sorted out may not immediately resolve all my problems (I'm pretty sure I have developed bad habits and thought patterns that will need to be broken), but it's exciting to think that I might get to the end of all of this and feel better than I have in two decades.

I did not mean to write so much, but thank you again for sharing. I cannot tell you how much it meant to me to have someone else validate my experiences.


Mikky 3 years ago

I've been wondering if I have a thyroid condition for a while. It all started when I started having these obnoxious hot flashes on my way to class every day, so I went to the doctor and they basically told me I just needed to exercise more and stop eating "bad food." I did get a TSH test done about a year ago, and the number wasn't wildly abnormal, but some websites say that it's borderline/early signs of hypothyroidism. Then, every other symptom you talked about started gradually appearing, it actually sounds like you have written down my story! I'm still scared to go to the doctor and get my levels checked, as stupid as that sounds, because I'm worried they will just tell me the same thing and dismiss me. Which, fine, I'll go to a different doctor, but I'm on my parents' (crappy) health insurance that they pay for themselves, and they are on a very tight budget right now (my dad's income relies on getting "jobs," it's somewhat freelance and he hasn't gotten a job in a frighteningly long time), so I just feel guilty about spending money. If it gets worse, I will for sure go in, but if I've been doing ok for a while, it's tough to bring myself to get it checked..

Anyway, sorry to rant, but I wanted to thank you for this article; the part where you said you were worried that the symptoms were just character flaws really hit home. I keep thinking that I'm just a lazy, whiny hypochondriac. It really gets me down sometimes. I feel a little bit better now, though, so thank you!


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crusade4answers 2 years ago

I actually cried when i read this. I finally after years of doctors specalists & natural therapies convinced my GP i had hypothyroidism, but my treatment is not enough. I get sick every other week if not every week and didn't link the two...neither has anyone ive seen. Basically been told to take anti-depressants that never work, or consider hypnotherapy as it must be in my head. I know im not imagining being sick and just changed doctors again...


sadie 2 years ago

It didn't occur to me that my depression may actually be a symptom of a disease - I just thought that I was a self-pitying and a rather pathetic person who liked to mope and feel sorry for herself. I HATED this side of myself - and the more I hated it the more bad and depressed I felt.


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Snakesmum 14 months ago from Victoria, Australia

Hypothyroidism is sort of a hidden disease. I didn't know I had it until my Dr decided to do extra blood tests with my cholesterol tests. The results showed I had this problem. When I researched it, I discovered that a few of the problems I'd had for years could be related to this disease. I've been on thyroxine for about 18 months now, and the dosage needs to be changed a little; it seems to take ages to get it just right. Here's hoping.......

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