Myxedema

[tinygigi]

Hypothyroid and experiencing generalized myxedema!

[Redditch]

What medication are you taking? This is your thyroid playing up need to get it under control.

[tinygigi in reply to Redditch]

I am currently taking WP Thryoid 3 grains a day. I started at 1/4 grain in November and have steadily worked my way up to 3. I have been on 3 for the past two weeks and after staying on it for 6 weeks total, we will do labs again. My body temp is coming up nicely, so I am hoping that my T3/T4 levels are up too. Do you believe once my thyroid is optimal that the mucin will go away?

[Redditch in reply to tinygigi]

Yes I do. 3 grains is alot so will probably do it. I would cut out gluten and dairy and only drink filtered water for a couple of weeks on top. You need not to anger your auto immune monster.

How's your gut? This is a long process but you've been decisive and brave good for you,!

[tinygigi in reply to Redditch]

I have been gluten free (other than something hidden) since the 90s. I went gluten free because I was having digestive issues but do not have Celiac disease. As for dairy, I don't do much. However, I do eat two eggs most mornings for breakfast. Should I quit that too? My gut is good now in that I don't have any digestive issues that I am aware ie. no bloating, no pain, digestion itself is normal, etc.

[Karispitit]

I get this very badly. I was able to get rid of it with T3 but it has stopped working for me and come back with a vengeance. I feel for you. Hope you get the answers you need. My T3 gives me very bad diarrhoea so have had to reduce it to 25mcg from 300mcg. Wish I could help you more.

[tinygigi in reply to Karispitit]

Thank you for the response! I may need to add T3 to my arsenal to see if it helps with the mucin buildup in the tissue. I am sorry that it has stopped working for you. I KNOW how awful this gunk is.

[marigold22]

Apologies if I'm being dim - but in 1981 I was diagnosed with myxedema. More recently I had presumed that myxedema was the old fashioned word for hypothyroid. Do you know what the difference is please?

[Clutter in reply to marigold22]

Marigold22,

Myxedema or myxoedema is a term used synonymously with severe hypothyroidism. However, the term is also used to describe a dermatological change that can occur in hypothyroidism and some forms of hyperthyroidism.

Myxedema - Wikipedia

en.wikipedia.org/wiki/Myxedema

If untreated, hypothyroidism may lead to: Myxedema, a condition that causes swelling of tissues, increased fluid around the heart and lungs, slowed muscle reflexes, and a slowed ability to think. Myxedema coma, a rare, life-threatening condition.

Hypothyroidism-What Happens - WebMD

webmd.com/women/tc/hypothyr...

[JOLLYDOLLY]

I have a oedema now, which started when the GP started messing around with my medication, reduced it from 200 mcg to 75! Have had all sorts of problems with it and will have to take a diuretic for the rest of my life. Ironically after many years of hell, I am now back on 200 mcg T4 and 20 mcg of T3.

I find keeping off diet cokes and any soda helps and drinking lots of water. But due to the damage, I find it hard to get shoes now and have to wear prescription ones.

If I was you, I would seek a second opinion with your thyroid and ranges, as your dose appears to be low, if you are experiencing this swelling.

I was born with a partial gland that does not work, so was in a coma as baby, thankfully a health visitor saved me, when she realised what was wrong, my poor mum was frantic evidently. I never had a problem for the first 32 years of my life, but as soon as they started messing around, I started swelling. My left foot is the worst.

They will say that too much thyroxine is bad for the heart, but then say if you are not getting enough, then they will prescribe the higher dose anyway, which just makes a mockery of everything. Seek a second opinion, its your body and your health. I would not wish anyone to experience what I have experienced.

Take care

[Heloise in reply to JOLLYDOLLY]

A member posted this yesterday and I have posted another article similar to that recently. Low thyroid can be deadly.

life-enhancement.com/magazi...

[tinygigi in reply to JOLLYDOLLY]

Thank you for the response! I am sorry to learn of your suffering.

I started on 1/4 grain of WP Thyroid and have worked up to 3 grains per day now. The way it is dosed, you have to gradually titrate up so after I am on this dose for a full 6 weeks we will test labs again. At that point, I may start adding more again.

So you believe once I am on the current dose, the mucin will subside?

[Eddie83]

You didn't tell us if you are taking a thyroid hormone supplement(s), and if so, what kind and dosage. Do you have test results to share?

[tinygigi]

Yes, I have been taking WP Thyroid since November. I started on 1/4 grain daily and am now at 3 grains daily for the past two weeks. My last test showed that I was still low in freeT3 and freeT4. After I am on the 3 grains for a full 6 weeks, we will do the labs again. At that time I will post them. Do you believe that once we know for sure that I am optimal, the myxedema will start to subside? I would have thought that it would have gotten a little better by now since I have been on meds since November.

[Katka in reply to tinygigi]

Hi

I only had myxedena on my face. But was awful. Literally as if my face was about to explode. But now it's gone. It can take months or I heard longer for it to dissappear even though being on correct dose. Just need to be patient. I stopped watching my face and then one day it was gone. Be patient. If you've had hypothyroidism for many years it cam take ages! I also don't eat gluten and dairy but if I do, my face puffers up again. My lab tests are optimal atm and I feel good. I'm on 3 grains nature Throid. I also workout but in the past when I worked out myxedema got worse..now it's fine. So once u are optimal just wait and be patient. It'll happen I believe. Don't worry.

[tinygigi in reply to Katka]

Thank you Katka! I appreciate your response and encouragement. I don't believe I have been hypothyroid for very long...at least if I was I had no reason to think it...plenty of energy, no issue with weight, good digestion, etc. When you say no dairy, do you mean eggs too? I usually eat eggs for breakfast but if you think it would help to stop, I will. Also, I use coconut milk to mix my protein drinks, is that ok?

[cwill]

My awful oedema and effusions gradually started to reduce but I put a fair bit of effort into treating my ankles and legs as they were so sore that they were getting ridiculous. I used TED socks at the medical compression level everyday religiously. I also always rest my legs up , with the knees supported. When resting in the day, in bed, I used a wedge to ensure that my legs were supported with my ankles above my heart. In rest positions work the muscles of the calf by moving your feet for about 5 minutes in every hour. Do not sit for periods with your feet down if you are not moving regularly. Also used compression leggings and had my usual massages. After everything started to get a bit softer I also used compression bandaging, left one day and right the next. This definitely made life more awkward but as a wheelchair and buggy user it was doable. And my legs are now way more comfortable and reduced in size. No muscles underneath it all but that is my next project. All the above took about 4 months to really make an impact. If you are trying to sort your dose, have the correct nutrient dense diet with no triggers, and take the appropriate supplements then you are doing all that you can so wait for your body to catch up.

[tinygigi in reply to cwill]

Thank you cwill! I appreciate your input!

[Liz061254]

Can I be really dumb and ask what myxedema is this whole thyroid business is so new to me and pretty confusing ? .

[helvella Administrator Thyroid UK in reply to Liz061254]

Myxoedema is where we get a build-up of mucin (a bit like jelly) in our bodies.

If you pinch your upper arm or leg, and can't pinch your skin, that could be myxoedema.

If your body, anywhere, seems to have swollen, and you press on it with a finger, does the indentation remain? Or does it disappear as you take your finger off? If you have myxoedema then it will be non-pitting. Most other causes of swelling leave pits from the finger which take a while to recover.

The myxoedema is a classic sign of hypothyroidism. So classic, so definitive, that the term myxoedema is often used as a synonym for hypothyrodism.

[Liz061254 in reply to helvella]

Thank ou thought that might have been what it was with the odema at the end I suffer terribly with this got the doctors on Monday and not going to leave till he does thyroid bloods as I seem to have every symptom pointing to it been feeling really crap since have a very bad bought of food poisoning last September skin nail hair aching limbs & muscles cold and tired all the time so need answers this time. To getting fobbed of with iron pills again . Love this site so informative thanks .

[CSmithLadd]

For those of us who have yet to get our condition under good control (or have lost ground); being hypothyroid can include battles with fluid retention/mucin buildup (myexedema). Like that cough deep in the chest as if a cold is coming (but never does) as the voice becomes even more hoarse than usual... all very common symptoms. We all know what it's like to deal with the swelling of ankles, feet and/or hands. No fun.

I hope the article below is helpful to you.

outsmartdisease.com/low-thyroid-and-other-causes-of-water-retention/

Healing hugs!

[tinygigi in reply to CSmithLadd]

Luckily I do not have any issues with my lungs/chest. It's just a jelly like feel under my skin in large amounts on back of arms, thighs/inner thighs, and calves.

[CSmithLadd in reply to tinygigi]

Hang in there. It's just part of getting there if you've been without T3 in your cells for a while. Mucin can be tamed by getting enough thyroid hormone into the cells. T3 is the shortest way there.

Hopefully you'll be free of this soon.

Healing hugs!!

[tinygigi]

Well the biopsy results are in...I do not have an abundance of mucin. My test results showed "scattered mild perivascular lymphocytic inflammation". The doctor said it was just regular tissue, nothing to be concerned about. So I am wondering if it's just fat gained from being hypothyroid.