Terrified of myxedema coma

[Nessiam]

So i've been reading a lot about how if I stop taking my thyroid meds i'll fall into a myxedema coma?? Is this true? I am already so nervous about self medicating, this absolutely terrifies me..

[radd]

Nessiam,

Yes, it's true because missing thyroid hormones have to be replaced.

Myxedema coma, although a life-threatening condition, occurs very late in the progression of un/mismanaged hypothyroidism and is fortunately rare.

[Nessiam in reply to radd]

So it's not something to be concerned about?

[radd in reply to Nessiam]

Absolutely not, if you take your meds responsibly and look after yourself.

[Nessiam in reply to radd]

That is such a relief, It's so easy to scare yourself when dealing with things like this. Thank you!

[AntibodySlayer in reply to Nessiam]

I used to be worried about this too when I was first diagnosed and learning about it, but it's very unlikely if you take your meds, get your levels monitored regularly, and live a balanced lifestyle. All the best

[Katepots]

Hi Nessiam,

If you are taking NDT you won't fall in to a coma.

How much NDT are you taking?

Have you posted your blood results on here so people can advise you on dosage?

What symptoms do you still have?

I wouldn't worry about self medicating. It's the only way we will get better as GP's don't care or are uneducated!

[Alexa488]

don't forget myxedema as a symptom itself! My untreated hypothyroidism caused my lower leg and foot to swell like an elephant and led to a tendon rupture of my Achilles also amazingly undiagnosed I changed doctors and an immediate blood test revealed high tsh, while an MRI showed a classic neglected Achilles rupture

[Hidden]

You would be sleeping most of the day and night and well before then you would realise something was wrong. Take your meds regularly, eat sensibly, take rest responsibly and if you burn the candles at both ends sometimes make sure you give yourself recovery time. Don't be stressing about comas. I was close once, knew something was very, very wrong and dealt with it, before diagnosis. You are on meds, enjoy life.

[Clutter]

Nessiam,

I have no thyroid and was off medication for 4 weeks and was nowhere near approaching a coma state. Myxoedema coma is an end stage condition of untreated hypothyroidism. If you take your thyroid replacement regularly you won't experience myxoedema coma.

[donnabrain]

this post has caused me to think

I have been thinking some time about self medicating,but have not got around to doing the tests I ordered

Just before moving house I noticed that they had expired,so thought I would order more after the move,but again have not got around to it,and finances are tightly squeezes at present.

My benefits reduced a while ago,and are set to reduce again,and I worry about starting something I may not be able to afford to keep up.

Would it be dangerous then if I were to start,but have to stop due to lack of funds?

[EleanorM-G in reply to donnabrain]

Well yes, it could be. But it could also be just as dangerous to not take anything at all-Not to mention the fact that you won't be functioning properly. As said above, it is under medicating or not medicating at all which is dangerous if you have an underactive thyroid.

Can you go the NHS route? Can you get re tested and along with your symptoms get free medication from them? If they are saying everything is "normal" you can post your results and ranges on her, get everyone's feedback and get signposted to articles etc that could support your argument for treatment from your doctors. I am a newbie here, and this forum has helped me massively.

[waveylines]

Donnabrain -you would be best to get diagnosed through your GP then the medication would be free. If you start medication with a possibility that you will have to stop then this will just confuse the picture for your GP and could end up delaying free treatment. It's probably not a good idea to start this medication if you know you can't maintain it as its a life long treatment.

I don't know your situation -have you been to your GP and got them to do blood tests and reported to them your symptoms. There a sheet in thyroid UK you can download about some if the commonly occurring ones.

[JOLLYDOLLY]

Hi Nessiam,

I agree with what everyone is saying. I was in a coma as a baby because they didn't know what was wrong with me until it was nearly too late, (quick thinking of a Health visitor at the time). I only have a partial gland, which has never worked so had to rely on medication always, since I was five weeks old. According to my mum, it took her all day to feed me 2 oz of milk and evidently my grandmother stuck a pin in me, to get a reaction, they didn't get any, so that is when they realised something was really wrong and the Health visitor realised what was going on. Spent the next few weeks in hospital.

When my dose has been wrong, I have slept for hours at a time and still felt tired, so you would have to be almost sleeping all day to get to the coma stage and only then if you did not have or taken your medication. From what I have been told, as long as you are on the right dose, you have enough hormone in your system to see you through a few weeks, although obviously not recommended at any stage, to stop taking your medication.

If you started showing symptoms that you are slowing down and you are not happy with your current dose, then keep requesting for it to be rechecked or get a second opinion elsewhere. I have oedema in both of my legs and feet, so much so, I have to wear either extension straps on my shoes sometimes and or specialist shoes on prescription It can be so painful. I also now have to take water medication daily (This was caused by a doctor dramatically reducing my medication many moons ago)

The only way I can describe the really slow stage, is a bit like one of those toys that you wind up and as the mechanism starts unwinding, the toy gets slower and slower, a bit like slow motion, even your speech starts getting slow, can even slur your words. I have found it very difficult to physically speak sometimes or get my words out.

Try not to worry, it is highly unlikely that the coma stage would happen. Just keep a list of your medications in your bag for future reference, just in case a medical team will know what conditions you have.

Take care

[sctjan]

I had experiences the same feeling as you. Keep up..do not take advantures like going somwhere without good medical service areas. Keep physical and netal balances in your life. Wait for new medical tech and treatment. Then, we can wean off this medicine. stem cell treatment.Take care.

[SilverAvocado]

Like a few others, I've been off my medication for weeks at a time, and have no thyroid so all my blood numbers got to very extreme numbers. Just after Xmas I spent three months with my TSH between 50 and 100+. Doctors were never at all concerned about this, and many times I could hardly walk or sit up in a chair. I've spent the last 3 years mostly in bed, with the replacement having little effect. So bodies can put up with a lot of messing about, you won't break in half if you're doses get a bit strange for a while.

[JOLLYDOLLY in reply to SilverAvocado]

Hi SilverAvocado,

Our bodies seem to be very forgiving. Mine certainly is. The trouble with Doctors they are not concerned at all, as all they are interested in is the black and white print on a piece of paper. They have no comprehension of what it is like for someone with a slow or non functioning thyroid. I can understand the walking bit. I have in the past, felt like I had leaded weights on my legs, everything is such an effort. If I sit in a chair, I nearly always dose off or in extreme times, fallen asleep during a conversation. Perhaps its my age lol as well

[LAHs in reply to JOLLYDOLLY]

For two years I was mismanaged by a stupid Endo. This was when I was only just learning about all this. I assumed that the Endo knew more about Thyroid problems than I did so I obeyed her instructions although I didn't understand why she couldn't answer simple logical questions, the most important one and most famous being, "If I am feeling hypo, why do you want to lower my dose?" answer, "Because your TSH is suppressed". I got sicker and sicker and SilverAvocado's mention that she could hardly walk reminded me that I could only shop at large supermarkets because sooner or later I could find a parking space close to an abandoned shopping cart. With the cart I could walk slowly into the store and lean on it to do my shopping. It was shortly after that that I realized I was on my own. I got yet another doc, changed to NDT and all of my symptoms disappeard. Today I ride my bike about 1 hour every other day and I can run across the road should a car approach when I am crossing. I pretty much self medicate at this point just because my wonderful new doc is forced to obey the "TSH n T4" doctrine by the powers that be at the hospital but we have reached a don't ask don't tell agreement regarding my dose.

[donnabrain]

have been tested several times and always told results are"normal"

back in 2006/7 and 8 I was sleeping all day and night,having sleep paralysis attacks during the day that lasted hours,

long story,but I do have APS and once diagnosed in 2007 I tended,as did gp to put everything down to that

it is only through Mary,s advice on APS site that I ended up on here and its clear to me that I was suffering with thyroid issue back then,,as was always cold,and just could not get warm,other stuff too but am typing this whilst waiting to be called for my anual check up at the lupus unit,so not much time

have recently had tsh done and was told it was normal,but posted result here and was told it was a bit high

they won't do T3,T4 at my gp,I asked

[Eddie83]

Not likely, unless your thyroid has been completely removed and you stop taking thyroid hormones.

[Hillwoman]

I came very close to myxoedema coma at the age of 22, but that followed a lifetime of low thyroid function - obvious signs in babyhood onwards were recorded in my medical notes but not recognised for what they were. So don't worry, you've quite some distance to go before anything so drastic happens to you.

[MichelleBerko]

What is it with our doctors?! Is it ignorance, scare tactics or just trying to belittle us into thinking we don't know anything?!

My doctor told me NDT grains were inconsistent in content, and if I stopped taking my Levo I would get cretinism! I ran home, looked up cretinism and saw images of Elephant Man meets Neanderthal Man.

On further research I quickly read that it's a congenital disease, obsolete in the Western world and you can't 'just' develop it.

The same GP didn't believe me when I said I felt my Levo stopped working when she put me on HRT, (estrogen and Levo together ... Duh!) she took me off B12 injections when I crept back into bottom range by 33. I'm getting angry just thinking about her!

I've changed:

1: My reliance on doctors and I've taken back responsibility for my health

2: my medication - happily on NDT

3: my weight - I've lost 2 stone since March

4: my diet, gone gluten free

5: my labs. B12 up, iron up, folate up, TSH down

6: my doctor!!

And I'm only a beginner - these groups are amazing for support, advice, inspiration and instruction. This forum, STTM and Thyroid UK.

I don't know why our doctors feel the need to terrify us into conforming with their guidelines. Or ignoring facts actually staring them in the face.

I had to call the GP out for my 9 month old baby on Christmas Day, she was so so poorly. He came out, looked at her and said 'Calpol' and left. On Boxing Day morning I took her limp into A &E, she was rushed into an incubator with double pneumonia and I had to sign 'those' forms. She was dying.

My daughter, who is now a beautiful 26 year old woman, is testimony to the fact that doctors are fallible. Yet they think they are infallible. They don't like being questioned, they don't like patients telling them anything, they use arcane methods of control.

Please research thoroughly, but go with your instinct.

Good luck xx

[Nessiam in reply to MichelleBerko]

I completely agree with every single thing you said, thank you!

[MichelleBerko in reply to Nessiam]

You're welcome honey... Grab your life back.

Look into B12 injections too... The icing on the cake x

[JOLLYDOLLY in reply to MichelleBerko]

OMG!

I can't believe the GP said that to you MichelleBerko! I think I would have slapped her. I absolutely hate that word, detest it, cringe every time I hear it or it is used out of context. How ignorant and ill informed he/she is. The "C" word as I call it, was given to babies born with the condition and not treated or left too late, so caused severe disabilities. It is on my file evidently as I was born with a partial gland.

I am so sorry you were spoken to like that and understandably so upset.

Up until I was 32 I didn't really have a problem with the dose I was on, except when I was a child but it was soon rectified. But for the last 22 years I have had nothing but trouble thanks to a stupid GP who dramatically dropped my dose!

2014 I ended up in HDU for two weeks in 2014 with severe pneumonia. I have been told I am lucky to be here. Caused permanent stiffiness/damage to my lungs and may be on oxygen for the remainder of my life, fortunately only at night at the moment. This was down to my current GP not looking at the bigger picture. I had the pneumonia jab about 18 months ago, so hopefully unlikely to get it again, well not for 5 years. I just dread getting an infection now.

I am so pleased that your daughter fully recovered from pneumonia, it is a killer

I do not trust doctors at all, at the end of the day it is merely an opinion they have and not written in stone. I would always seek a second or third opinion if I had to.

You take care

[MichelleBerko in reply to JOLLYDOLLY]

Thank you for your comments, but woah you've really been through it!

I didn't know there's such a thing as a pneumonia jab - wow I wonder why our doctor didn't tell us huh??!!

We were told my daughter's lungs were scarred for life and she would always be vulnerable.

Thank you for telling me what my GP should have told us 10, 20, 25 years ago... agghh!!!

I truly hope you find a path to good health - the system won't help you I'm so happy you're doing it yourself xxx

[Nessiam]

Wow okay, thank you so so much everyone! I feel much better. Once again, this forum is a life savor.

[farie02]

hi dont get too worked up my lab ranges are all over the place an im xperincin things but once i stop fighten its not to bad..tsh 28 t3 2.8 t4 10.4 been like this comin up 3yrs...