Chances of hypothyroidism becoming myxoedema.

[sobs1962]

Is it possible for hypothyroidism to become myxoedema whilst taking levothyroxine but not converting from T4 to T3. I am currently on 125mcg of levothyroxine,which I take late at night but worried that my condition could deteriorate to the point of hospitalization, especially as it may be a very long time before I get to see an endocrinologist. My worst symptoms are severe brain fog, severe treatment resistant depression, feeling cold to the point of not being able to get warm no matter what I do on occasions.

[Lalatoot]

We are all different but as long as you stick with that dose I don't think your condition would deteriorate so far that quickly.

Don't ask why but I cut my levo dosage from 100mcg to 25mcg then back to 50mcg over a period and it took 5 months for me to become quite poorly but not quite hospital poorly. My TSH was 32 and my FT4 10.

[Hillwoman]

Yes, I'm afraid so. Many people have myxoedema - the build-up of what is commonly termed 'mucin' - on levo treatment. If you actually mean myxoedema coma, I'm afraid that is also possible on standard treatment.

I was prescribed 150 mcg levo for 20 years, and by the end of that period I was even iller than when first diagnosed (this in turn happened many years after the first signs). I was so cold, my extremities were painful, and I couldn't get warm except after a hot bath (and only for an hour afterwards). I stopped converting beta-carotene to vitamin A, so my skin and hair turned a weird shade of yellow. I was losing consciousness frequently. I'd developed many other signs and symptoms besides those at this late stage. What I didn't know then, but eventually found out, was that my conversion was poor, and I had peripheral resistance to thyroid hormone, which is only treatable with a higher than normal dose of T3.

[Hidden in reply to Hillwoman]

Goodness me, thank you for sharing as this explains my symptoms entirely. Every Endo and even Prof W dismissed it and said it could not by Myxedema as is no longer exists!! I have had to self medicate as all appts cancelled and to be honest fed up with not being believed (it is in my family my poor mother died from it). I now take T3 during the day and NDT at night and touch wood I have had no more episodes of unconsciousness however I do still at times wake up with very weak legs and arms plus further nerve damage (take Vit B12 now). My last Myxedema episode last over an hour whilst an inpatient and totally ignored, not treated or monitored at all. This left me with severe nerve damage in my feet, my left leg, left eye (never wants to open in the morning) and left side of mouth. I was yellow nearly all the time and still ignored. One thing I have 'clawed' toes from it, as did my sister and mother is this something you are aware of? Keep safe! x

[Hillwoman in reply to Hidden]

Oh my goodness! The profession's ignorance of the most serious clinical signs of hypothyroidism is truly frightening.

I'm not aware of the connection with clawed toes, but I'll look through my older medical texts, since these are often more reliable sources of knowledge about thyroid disease. B12 supplements - if you can absorb them - and also magnesium may well be very helpful.

I've been away from the forum for a couple of days, so I wasn't aware of your earlier post when I answered this one, but I understand that you are taking propranolol. This will certainly have an impact on T4-T3 conversion.

I'll come back to you if I find anything else that might be relevant.

[Hidden in reply to Hillwoman]

Thank you x

[vocalEK in reply to Hidden]

You got me curious, so I put Dr. Google to work and found this: hypothyroidmom.com/10-signs...

So THAT explains the cramps I sometimes get in my feet when I bend my toes downward.

[Hidden in reply to vocalEK]

Thank you, such an interesting article

[jimh111]

This is most unlikely. I wouldn’t worry about future what ifs, your doctor needs to replace your propranolol with something else. Propranolol messes up thyroid hormone, that’s why it is used to treat hyperthyroidism.

[Hillwoman in reply to jimh111]

Jim, could you explain further why this scenario (not sure which: myxoedema, or myxoedema coma) is unlikely? I've been close to needing emergency treatment while on a 'standard' dose of levo, because of poor conversion and peripheral TH resistance.

[jimh111 in reply to Hillwoman]

sobs1962 has been on a similar dose since 2002 so provided the propranolol issue is sorted there’s no reason to expect a major deterioration. Myxoedema can mean different things, literally mucous and a goitre but usually used to describe severe hypothyroidism. I think there is already fairly severe hypothyroidism and replacing the propranolol prescription will be a useful first step.

[SlowDragon Administrator]

Important to see GP ASAP to get propranolol dose reduced as quickly as tolerable

[Rainey28]

i take that dose of levothyroxine and the symptoms your describing is me as i don't process vitamin D very well so i also take a 1000 iu dose of vitamin d..... now instead of being miserable and grumpy and tired and crying. I am like a squirrell with a new tail really feel perky and happy. so you can buy them over the counter,I would give that a go

[vocalEK in reply to Rainey28]

Only 1,000? I was taking 5,000 IU after finding my blood level of Vitamin D to be only 29 ng/mL. It got up to the mid 40s and stuck there for nearly a year. Recently I added another 5,000 IU (without the 100 mcg of Vitamin K2-MK7) because I am trying to get my blood level up to over 60 in an effort to prevent recurrence of lung cancer and emergence of breast cancer.

Here's a handy calculator to see how much to take, depending on your goal for blood level.

grassrootshealth.net/projec...

[Miffie]

Try not to worry I was on levo only with below range T3 to just 20% at most into range for over a decade on 500mcg levo. I finally became so unwell I asked for a referral or to self medicate. I am self medicating as referral refused. I felt very confident as I had previously had over forty years on NDT on prescription. I have been underactive for over sixty years so have a little understanding. I think you will be fine as we will hopefully be back to naormsl soon and you will see the endo. Take care

[GKeith]

You need to add T3 or try NDT. How do you know you're not converting T4 to T3? What country are you in? Are these doctors that dense or really just the devil's minions? You need to get well asap. If there's a special place in hell for certain professions, the doctors' room must be full-up to overflowing. Peace be with us all (even the doctors, I think)

[Jenny583]

Snap. Except I have not yet had access to Levo. But I had all those symptoms & the high BP meant propranolol which made hypothermia & treatment resistant depression worse. I was forced to self treat - with the help of Thyroid UK.

The advice that others here are giving you is sound. I wish I had known all this when I was young.

There is plenty of info on this site, with links to true wisdom.

I hope you win this battle with the help available here. xx