T3 and swollen feet/ankles/legs: Just exploring... - Thyroid UK

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T3 and swollen feet/ankles/legs

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Just exploring every avenue as my doctors don't seem to be able to find the cause.Has anyone ever had swollen feet/ ankles/ lower legs attributed to liothyronine? My PCP was the one that said it was diabetic neuropathy and prescribed gabapentin which I am now off of-thank God.

I believe it's lymphedema but can't figure out the cause. I've been to the lymphedema clinic and they say it isn't but, just in case, they want me to come to therapy(lots of out of pocket copays) and sell me expensive stockings. I'm not impressed with any of these recommendations. My gut instinct tells me to keep doing my own investigation.

No one seems really interested in getting to the root cause so I guess it's up to me. I feel what's been offered is hit or miss.

I've started taking Serrapeptase and tomorrow I'm going to the store and stock up onfoods that help get rid of mucus and help break down mucin stored in the body. And start my daily apple cider vinegar again.

Sometime ago another doctor said cellulitis and prescribed Clindamycin. I took 3 courses over time and I'm not taking any more.

I also joined the lymphedema forum here but most of the advice is mainstream. I really have no faith in mainstream medicine over this. And I'm not going to spend time,money or energy being a guinea pig.

As Gilda Radnor use to say on Saturday Night Live. "It's always something." I am finding many good alternative youtube videos which make sense.

I think it's an illness that not much is really known about because no one seems really

interested. Just have a "You'll have to live with it" response. I'm going to try to find my own alternative way.

Thanks, irina

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22 Replies

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Lunatic166 years ago

what alternative did you use i am having the same problem

• in reply toLunatic166 years ago

Diet changes and especially starting to take a proteolytic enzyme- Serrapeptase.

I am seeing allmy docs within the next 2 weeks-heart, primary, and endo and plan to really address this. Have several doctor visits coming where I am sharing my own ideas. Will keep posting on my progress (or lack of!) irina

shaws6 years ago

What dose of liothyronine are you taking? I don't want to cause you stress but I've just read the following:-

Get medical help right away if you have any very serious symptoms of too much thyroid hormone, including: chest pain, fast/pounding/irregular heartbeat, swelling ankles/feet, trouble breathing, unusual tiredness.

A very serious allergic reaction to this drug is rare.

webmd.com/drugs/2/drug-7716...

• in reply toshaws6 years ago

Hi shaws. No you are not causing me stress. What you say is helpful. And I like to know what I'm up against so I can do my homework and at least have some intelligent questions and suggestions ready for my visits. And also know when I am being helped or placated.

It was last April (2018) when I changed from my (old) Primary doctor handling my thyroid issues to an Endo referred by my Electrophysiologist ( who is probably the best doctor I have had in a long time-he helps me with so many other things besides my a-fib.) My tsh was 10 and the old Primary had told me not to worry until it reached 12. Never mind I felt like death warmed up!

In the beginning I was very hopeful; understood about lowering my tsh- my EP said because I have a pacemaker my tsh could be below 1 (which it is now). Also the endo was willing to prescribe T3. I have so much abd radiation I am a poor converter and absorber for many meds.

After labs I was started (Apr 18) at 5mcg. But between longer times between appts and seeing 2 different PA's between being able to see the doctor, they dragged their feet about raising the T3. (my last T3 (6 weeks ago in prep for my upcoming visit was at the bottom of the low range. The PA implied I wasn't taking my meds correctly. PLEASE! And I had to beg to get these increases. Once they only wanted to raise the dose by 2.5mcg. But my prescription said 90 tabs so I raised it by 5 mcgs myself then sent an email informing them I had done it.

To add insult to injury I think I am probably one of the pushiest, more aggressive forum members about encouraging others it's their right to demand good treatment and getting the care we need and if I can't get what I need who can?

So basically as my liothyronone dose is only at 15mcg a year later I'm frustrated. Though maybe it's a gift if it is causing the swelling. I've mentioned and shown the swelling to everybody but Trump (! )and no one seems worried about it except me.

I would call and ask to see the doctor instead of the PA this Friday (April5) except it would probably be another month or so before I could see him.

I'm seeing my PCP (Primary doc) who I really like this Wed and am going to ask him if he will take back my thyroid care. I dropped my old Primary last year when she wouldn't even order full labs. Just her usual T4 and TSH.

I will sort this out but blood may flow before I'm done. And it won't be mine.

I am so pissed!

Thanks shaws for listening to me!.xx irina

shaws• in reply to6 years ago

Some medical professionals seem to be afraid of prescribing T3. After all it is the Active Thyroid hormone, without which we couldn't survive. T4 is an inactive hormone and has to convert to T3. Some of us are not capable of doing this, so T3 - even in a combination of T4/T3 - might resolve many symptoms. 15mcg of T3 is equal, in its effect, to approx 60mcg of T4!

25mcg of has an effect of around 100mcg of T4, so your dose I wouldn't say is optimal.

Some people are 'Thyroid Hormone Resistant' which means they have to take a higher dose than normal.

I myself take one 25mcg plus 1/2 of 25mcg.

I am not Resistant and one of our Advisers (deceased) took 150mcg of T3 in the middle of the night, to enable him to function. I doubt many doctors know about Resistance and that only T3 will resolve symptoms in a higher dose than normal.

I hope you feel better soon.

• in reply toshaws6 years ago

Thank you. You also gave me an idea when you said you don't need T4. I see my Endo PA this Friday and will discuss trying stopping the T4. I really don't think I convert even a little. And my thyroid is atrophied from neck radiation. If nothing else-no use taking a drug I don't need. She is going to check labs again and I am also going to push for a prescription with enough tabs to raise the T3 another 5 mcg. Which will bring my total to 20mcg/day. Will also mention the side effect aspect. I am on 137 mcg of Synthroid and my level is at the very top of my lab range. But I don't think it is helping at all.

I may end up being a self medicator. Sometimes doctors are over cautious because we (US) are such a litigious country. Many frivolous suits that ruin it for everyone. A couple of years ago I had a minilap to remove my gallbladder. Afterward my surgeon told me I had so many adhesions from radiation years earlier the area looked like a map of New York. So I know not much of anything gets absorbed well! LOL

You've given me more ammunition. Thanks. irina 😊

Tugun6 years ago

Hi,

Sorry I can't help you but good on you for being so proactive! Well Done.

• in reply toTugun6 years ago

Thank you T. We have to be, don't we? It seems we all have to fight to get proper care. We have two different healthcare systems (UK and US) but for different reasons they cause us the same problem- sometimes difficulty in getting the care we need.

My understanding is your problem is having to deal with the NHS and where they believe the money should or should not be spent. Sometimes making it difficult to get what you need. Our problem here in the (US) is we can get almost any care we need but because our healthcare providers can almost always prescribe and treat and know they will get paid by medicare and private insurance my concern (as an educated consumer) is that I always feel I have to fight to avoid getting unecessary expensive invasive treatment that doctors know they will be reimbursed for.

Because I was a nurse for so many years I know how the underbelly of my healthcare system works and it is often driven by greed. Especially by big corporations who donate big money to politicians who write the rules we often live and die by.

There is also the added burden for both of us that whoever controls the pursestrings gets to make the rules. This causes many excellent doctors and other health providers to be wary about bucking the system by providing the care they would like to give to their patients.

It's a greedy world in many ways, IMO, and the result is patients have to go to bat for themselves. It's hard and I don't have the answers but what I can do is try to have the information I need to fight my medical skirmishes when they arise.

As usual just my opinion. I usually am not bothered by having to do this. I'm just worn down at the moment.

Take care. irina

Hellonwheels6 years ago

I find that sitting a lot/remaining in one position too long cause the swelling in feet, legs, and ankles. Can't get on a plane unless I take diuretics for 2 days prior, and 2 days after, as I swell so much that I have no clothes to fit. When I am forced to sit a lot, such as long drives, I stop to walk at least every hour; this makes the trip take longer, but I do not swell nearly as much. Same for when I am forced to sit at desk for long periods. I just get up and walk around frequently. I am also using t3, at 25 mcg/day with my 120 Armour.

Myrna6 years ago

I am not on T3 just Thyroxin and I am very swollen up. I have had to increase my shoe size my feet are so swollen. Diuretics do not help and I was told they are dangerous and to stop taking them by my neurologist. I left a post about him elsewhere. My Dr thinks I have PD but he does not. he thinks I am old fat and depressed. I was not depressed till I got that diagnosis lol.

• in reply toMyrna6 years ago

Hi Myrna. Funny you should mention about the diuretics. I've been thinking they might be the problem.

Doctors seem to think they are fairly harmless'-not true- and I have wondered about what long term use does to our kidney function.

Also I wonder if for me it is just being given to prevent heart failure and not really necessary. But though my dose is the usual 40mg/day often I only take 1/2 so as not to dehydrate myself and some days I skip altogether. And do fine.

Mt Electrophysiologist knows I do this and is fine with it. Also my permanent a-fib is so well controlled- no more heart failure sx in almost three years. I take no cardiac meds, eat VERY little salt and have a pacemaker, ablation, and a Watchman that are working just fine. I see him in a few weeks and am going to ask about really cutting down on the lasix-just have it on hand if occasioally needed.

And your right. It doesn't touch the lower leg swelling. Also I have no swelling in my hands or fingers. My same rings fit just fine.

Maybe "lasix forever" is becoming an outdated concept and it's time to let go of another drug that does more harm than good when just used for prevention and not just when it's needed.

Just my opinion. Take care. irina PS I know we need it but I don't think levo is so harmless either.

Myrna6 years ago

Levo is far from harmless. many of us have permanent kidney infections and are on antibiotics forever. many of our symptoms could be from Thyroxin. The fluid did not reduce with the diuretics. I cannot get T3 because at my age it could affect my heart. I bet most of the meds I am on I don't need or are making me sicker. The weight is almost surely because of the Hypothyroid. I do not believe my tremors and falls are due to my age and depression. That is just ridiculous, I wonder how these so called specialists can have a straight face when they look at me and say that. A cup of tea and a good book are more use for me and for them.

• in reply toMyrna6 years ago

I really do understand about medicine. Esp in seniors. It seems like we slowly wake up one day and are on 15(+ or -) prescriptions as everytime we see a doctor they throw something else our way.

There is even a name for this. I heard a doctor in the ER one time refer to my meds as "This patient is on a 'medication cascade' of stuff" meaning me. This was about 10 years ago and I made up my mind to find ways to get off as many prescriptions as possible.

I started with meds I had been on that I believed were just being continued because no doctor bothered to see if I still needed them. One by one I got off most of them and became very careful about new prescriptions offered.

In the beginning I tried to involve all my doctors some were helpful some were not.

The med that took the most work was losing the weight to get off all insulin. I switched to a plant based diet and finally did it.

It's possible but we must take the initiative. Some docs couldn't even remember why they were still prescribing some. I guess they just sent automatic refills without evaluating the need.

It's worth looking at our meds and every so often questioning can we try a lower dose or just eliminate them altogether.

Myrna• in reply to6 years ago

I have lowered the dose of some of them. I have noticed no difference to my health doing that. I am not sure what to do about the others. I have listened to what I have been told about exercise etc and am complying with that. I am stronger but no weight loss. Pain is terrible and still no relief. All my symptoms are the same I expected that. If I want a cure I will have to find it myself if there is one that is! I do not expect miracles just a little relief and improvement.

• in reply toMyrna6 years ago

I believe we are often our own best doctors. I am doing the same with all the supplements.

And healthy food is just common sense.

I find when I eat more of what I like and less of what the pundits say I should. I don't obsess so much over food and eat less.

The other thought I've begun to believe is we are all going to die of something sometime. We can do normal ordinary things to keep us going as long as it works for us. But I think that the hype about looking and moving like we are much younger is just that: hype! We are being encouraged to do and spend whatever to frantically stave off death. Money for the people promoting the products and health solutions and anxiety and dissatisfaction for us as we spend time, energy, and money trying to meet impossible goals.

I really just want to move around so I can be independent. I don't have to sprint-just get from point A to B. And if it takes me longer so be it.

I have been being encouraged (pushed) to get both knees replaced. And am seeing the doctor next week to actually schedule the first surgery .

I feel in my gut that doing this surgery (2 separate knees plus all the rehab time) is not something I want to put myself through. People say "oh it's not bad" but in the last 3 years I've had a pacemaker, an ablation, a Watchman procedure, and my gallbladder removed. I'm fine but I'm done for a while.

Also I was an operating room nurse for years and I know knees aren't always as successful as we are led to believe- sometimes leaving patients with less mobility than before. So I'm saying No! It doesn't fit my definition of Qualityof Life. I'm getting a lot of flack right now.

But I've spent a lot of time thinking that if I can still get around and be independent even with my walker I can definitely live with that.

Well, time to get off my soapbox! Thanks for reading to the end, Myrna. irina

Myrna• in reply to6 years ago

My BIL agrees with you and does not want his knees done. he manages to walk every day and has also had a triple and his chest is full of hardware. We manage the best we can don't we? On good days I use my crutch, on bad days I use my walker. While there is life in me I will keep on going. My mind is sharp and that is what I care about most of all. I love to read and use the internet. as long as I can do that I am very happy.

• in reply toMyrna6 years ago

My sentiments exactly. I'm happy when I can maintain my ability to get around independently even if it's with my cane (at home) or my walker when out. And if I can be reasonably pain-free much of the time. Also whatever my physical limitations are I can cope. I just ask that my brain keeps functioning and when I have my chats with God I really only ask that my mind and my body leave this earth together.

My big wish is to stay out of assisted living and nursing homes. To me, esp in the US, they are a fate worse than death.

Years ago my mother who was old wanted to die at home and I promised her I would see to it. She broke her ankle and then,as many old people do, went down hill cardiac wise from limited movement.

I had to fight family members but she died peacefully in her own bed at home. I was there and felt good I could do this.

That's what I want for myself. Take care. irina

Myrna6 years ago

We looked after my mum right to the end almost. Then on the day we could not anymore she died the night we took her to the care home. She had alzheimer's for many years and was bedridden. I think it was God's wish that she should not die next to my dad. We then looked after my dad till the end. I looked after him during the day and my sister took care of him at night. This generation is not like ours. They will not look after us they will put us away and I dread that. My mind is too intelligent and strong to be able to live in a care home. it would finish me. I live in England there are a few sheltered housing opportunities but they are very over booked. Once you need help you are moved to a care home and that is more or less the end. Better not to think about the future and live for each day.

Cariad1236 years ago

I would suggest that you have your kidney function test done x

• in reply toCariad1236 years ago

That definitely could be a cause. But I've had those labs done and there are no problems there. 🐱

Enfrance3 years ago

Hello! Yes, I have had the same experience with T3. In fact, I am now on a combination of T3 and T4. The minute I increased my T3 from 25mcg to 50mcg (in addition to my T4 at 125mcg) ***I noticed swelling in my ankles and overall tightness in my legs. Previously, I had been on T3 only and even up to 225mcg for approximately 5 years and yes, I had the swelling but, like I thought it was just my body. Now, I know why.

I am now gradually increasing the T3 slowly after removing the T3 entirely, while adding in the T4 — so now I can attest for the differences. The T3 has really helped reduced my tummy bloat, and hypo symptoms in my case, but the swelling in the ankles and uncomfortable tightness in the legs when I literally had none before the increase is very frustrating. I can keep you posted as to what will happen going forward.

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