Swollen Ankles - so fed up :(

I hope someone can help me.  I have suffered with swollen ankles, legs and feet since my first pregnancy over 10 years ago.  It was so bad towards the end of each pregnancy that I could not wear shoes at all...literally barefoot and pregnant - haha a great look :/

Got on the merry-go-round of thyroid issues after my second child was born, due to multi-nodular goitre, hypo, hyper, not medicated at the beginning because it always seemed to right itself, even though it fluctuated a lot.  Had several ultrasounds, biopsies - always inconclusive and had so many nodules they could not possibly aspirate every one.  Eventually was told I needed a total thyroidectomy which was performed in April 07.  I've been on 100mcg thyroxine per day ever since (was adjusted to 125mcg and now back to 100mcg), in case that matters.

My ankles improve overnight when they are elevated and swell up every day, more so in the hot weather.  Within the last year I have had bloodtests and xrays and the doctor says she can't find anything wrong.  She doesn't want me to take diuretics as they are bad for my kidneys and heart.  Rest with your feet up she says, yeah you try that with 3 kids I say...

I'm not sure what other info to add here, but hope this is a start and I can find a solution.  Will post photos I took tonight and I plan to take some more in the morning when my ankles are good so you can see the difference.

Thanks in advance for any suggestions...

[redheadaussie]

Hi there from a fellow Aussie!
  Sometimes oedema can be from a more insidious source like kidney disease or heart disease and sometimes it is just one of those things that tend to run in families.
Have you had your kidney function checked? Sometimes excess of alcohol can lead to fluid retention, some foods can cause it too. Sometimes excess of salt causes fluid retention too.
  There is also a condition, which for the life of me the name has escaped me right now...which involves the lymphatic drainage and sometimes this fails and leads to build up of fluid in the lower legs and ankles. It usually doesn't go away though during the day.

Just some ideas for you to throw around!

[goolarra]

My ankles and legs looked just like yours when I was hypo and followed the pattern you mention of going down at night and swelling again the next day.  My husband looked at them one hot summer day and actually looked frightened!  Did the swelling worsen with the decrease in meds?

Can you post your recent thyroid labs with ranges so we can take a look?

[Sally000000]

Thank you both for your responses.  I have just posted the pic of my skinny ankles this morning, to compare, and yes it is quite frightening.  I take offense at being called a Hobbit by my husband.  I have not had kidney function checked, will look into that, thanks.  I do eat salt but am conscious of how much I use, as I'm aware of the dangers, and I drink a bottle of wine per week.  I have heard of that condition you mention redheadaussie and thought it was called lymphoedema - something to look into more I guess.

I am hopeless at remembering to take my meds and average about 6 tablets a week.  I read somewhere that you have to take them at least a half hour before food, but I am quite sporadic with it, will that make a huge difference?  The swelling is definitely worse in the heat, and it seems to be worse with the decrease in meds, but I cannot be 100% sure on that.  I was also taking contraceptive pills then, and that made my ankles HUGE.  I am due for more bloodwork, last time my script was filled (last month) the doctor did not insist on taking blood and said I could stay on the same dose.  I'm starting to think I should get bloodwork done yearly just to make sure.

It's quite humid here this morning in Melbourne, so I'm in for a gorgeous ankle day :/

[goolarra]

Consistency is very important.  If you skip a pill a week, it's the equivalent of taking only 86 per day instead of 100.  You are supposed to take levo on an empty stomach (which is why most of us take it first thing in the morning).  Then, you are supposed to wait a half hour to an hour before eating or drinking anything.  Food can inhibit absorption and further dilute your dose.  Fiber, especially, interferes with absorption.

If you have been on a stable dose for quite a while, yearly blood work is the minimum you should have.  I've been stable for a couple of years, and I still have it done twice yearly.  After every meds change, you should have blood work six weeks later to evaluate the effects of the change on your levels.  Aging, general health, stress, etc. can all change meds requirements, so it's best to keep up with regular blood work.

My ankles haven't swollen once, even in hot weather, since I got my levels under control...

[Sally000000]

I'm so forgetful, I know it's no excuse, though.  Thank you so much, your last post gives me hope I can get this under control.  I'm going to demand blood work asap and hopefully the fact I am missing pills sometimes won't interfere with the results.  It probably will though right?

Here's hoping consistency and some good results will work out positively for me, thank you again, I'm impressed at how much you know.  I may have been told these things 3.5 years ago, but it didn't sink in!  Oh well, at least I have an avenue to pursue now, and will think positive about the outcome.  

Cheers :)

[redheadaussie]

Sally if you have a mobile phone, you can set an alarm to make it go off at the time you know you would be taking the pill. I had to do that for a few months when I first started taking my thyroid meds as I am not one of these regular risers! I take 14 tablets a day, so I sometimes miss one or three, but as goolarra says, if you miss the thyroid one, it can lead to not having the full dose. It is the WEEKLY dose in total that is important, if you miss one day, double up the next, but don't make a habit of it.
The thyroid medication has a half like of about a week so if you didn;t take the full dose this week next week would be harder for your body to cope.
  It might be adding to your swollen ankles.

You are right about humid in Melbourne! I had totally forgotten how my hands swell up! I can't get my ring on my finger today! But it is far easier for me to put my hands in cool water than for you to stop and stand in a bucket! LOL I do feel for you. I had the swollen feet/ankles in pregnancy with number 2, over due by 14 days and in the height of summer!

Be happy!

[Sally000000]

The alarm is a good idea, thanks.  I'm up at pretty much the same time every day and it's on my mind when I wake, the problem is getting distracted by kids and forgetting.  I've been good this week though, taking my tablet right now as I type!  Eeek it's only 1 tablet a day, I so would not cope with 14, oh my goodness...

I've been told not to double up the next day, but it makes sense to do it the way you say.  

Ahh the rain is lovely this morning, and it's set to stay for the weekend.  I'm glad.  Hope your hands are not too swollen.

[redheadaussie]

My endo said, theoretically we could take a whole week's worth in one hit, and he knows some patients who love to go camping for a week. BUT however, you then get a big hit of T4 and this makes some people a little hyper and edgy.
He said that if you only occaisonally forget a tablet then doubling is ok. Not to make a habit of it, but it is ok.

Yeah, my 14 tablets are a pain in the botty bits. But having had my parathyroids whacked about in surgery, and never kicking back in enough.  Vit D was always low too.
I am relieved it is raining, but annoyed coz I have a crick in my neck from sleeping in a weird postition and the cool air blew on me through the night when the change came. Grrrrr. My hands are good! How are your ankles today?

[ACNSC]

I also have "pitting edema" mainly in my legs, and have had it since my first pregnancy over 17 yrs ago (had to wear surgical hose during summertime in the south EEK). I eat ~very~ bland, and watch my sodium intake..but ~still~ swell. My mother and younger sister have this as well, but mine is more severe (1/2-1" indention and always have the indention from my ring). I have been taking 37.5mg of HCTZ aka Microzide for the past 3 yrs, and if I miss a dose I swell (10-20lbs). I have had my heart checked and it is fine. I had E Coli in my kidneys after having my first son back in 1993, and have yet to get them checked to see if they can be causing it. I also take 25mg of Synthroid, and the alarm on the cell is what I do too! It makes it easier to know when I can eat, when to take what meds, etc. I have read that milk interferes with Synthroid so I use non-dairy creamer in my coffee. I also found out that Alli (diet pill-sister was taking and on synthroid) can effect Synthroid. If you take a diuretic, you need to have your potassium levels check every so often (not that I have..but will @ pre-opt).
I hope you feel better. :D

[Sally000000]

I am grateful my parathyroid was ok after surgery.  If I can't remember 1 pill, I'd hate to think how I'd go with more.  Ankles were great yesterday morning, fine today, but last night I wore ankle socks under my boots at the 21st birthday we were at, and I had 2 very attractive deep rings around my ankles from the sock elastic when I got home :/  I'm almost resigned to the fact that they are going to swell up, but it won't stop me from trying to do something about it.

I will ask about the Microzide when I next see the doctor, thank you.  Having asked about duiretics in the past, I will be surprised if I am "allowed" to take them.

Glad to hear your hands are good redheadaussie, hope the crick in your neck has gone away by now too.  I'm out for the day, too busy to elevate legs I'm afraid....oh well, life goes on :)

[SwanSong]

I have a condition called Lipodermato Sclerosis which is an autoimmune disease. It was caused by cellulitis which I had in 1998. I wear compression hosiery (not white surgical hose not the same thing) 20-30 or 30-40 mmHg. If I don't wear them my lower legs and feet swell huge and pit. Cycling does help some with the edema.

When my thyroid is out of whack (when isn't it) it only adds to the edema.

Compression hosiery isn't cheap but it keeps my legs from becoming ulcerated, the next awful symptom which would appear if the edema isn't controlled.

I use my recliner daily to elevate my feet. Even a half an hour helps.

When I had perimyocarditis in 2007, I couldn't get my compression hosiery over my feet they were so swollen. Plus I didn't have the physical strength due to severe, under medicated hypothyroidism and perimyocarditis. I just gave up and didn't even try. I have one very loose pair of shoes and they were tight. I could barely get them on. Winter shoes and had to wear them in the middle of summer.

[stella5349]

Commonly with thyroid, a magnesium deficiency can cause this. Only a specific RBC magnesium test will tell you if its off.

A vit D issue also

and on thyroid - if the T3 - measured by an FT3 lab only - can tell of you are too low to keep the body at the right energy level to avoid swelling.

Also - with a hard mineral effect - iodine deficiency is common with hypo moon-face
( swelling) and leg.

[Dalmiechick45]

Hi Stella, any more details I should use as ammo with mr Endo on this?

[Dalmiechick45]

Hi Sally!
I am experiencing the exact same thing. Anything from your doc on this? I was obsessively taking picks of my feet and ankles for weeks because No one believes me. Just talked to one of my best girlfriends whose sister is and RN (and also has had a total thyroidectomy - like me) and she said to get an internist, so I will do that and keep everyone posted, but if you;ve had some resolution to this issue and have any tips on what to say to my docs... I'd appreciate it very much!  Also, just a note, she mentioned it could be a bad sign of poor circulation and should not just be something I look at as a cosmetic issue... and that any fluid build up is definitely worth a trip to the doctor.

[gimel]

When was your TT?   Please post whatever thyroid test results you have after the TT, along with reference ranges shown on the lab report.  If you look at this list of 26 typical hypothyroid symptoms, which other ones do you have?

Feeling tired (fatigue) and sluggishness
Weight gain
Slow movement and speech
Constipation
Increased sensitivity to cold
Puffy face
Swelling around the eyes
Loss of eyebrows
Joint and muscle pain, aches, and stiffness
Pale, dry, rough, and thick skin
Dry, thinning, or coarse hair
Brittle nails
A horse voice
An enlarged tongue
Decrease in taste
Decreased sweating
Heavy or irregular menstrual periods
Infertility
Miscarriage in early pregnancy
Depression
Slowed heart rate
Swollen ankles
Decreased hearing
Mild high blood pressure
Difficulty catching your breath (severe shortness of breath) when exercising
Decreased ability to exercise.