Severe Facial Edema

Severe Facial Edema

I have hypothyroidism and Charcot Marie Tooth disease. I am having severe swelling around my eyes and nose every morning. This has been going on for 8 years. Lately I get chronic ear infections and fluid in my left ear constantly. I just had my ear drained because I couldn't hear out of my left ear any more. When I wake up in the mornings I look like a monster! Look at my profile photo...

42 Replies

  • Welcome dianegracely to our forum

    I am sorry you have Charcot Marie Tooth disease which, in itself, is very difficult.

    Regarding your edema, has your doctor checked you for Thyroid Eye Disease, otherwise known as TED? It does look very painful. Have you had a recent blood test for your thyroid gland? If so, did your doctor check for thyroid antibodies?

    You need to see some who specialises is this area. It is very important.

    Have you had a recent blood test for your hypothyroidism? If so, please get a copy of the blood test results, with the ranges, and post on a new question for comments. It may be that your doctor has kept your TSH too high that may have caused the edema too. Your dose of thyroid hormones (levothyroxine I assume) might be too low. Most of us feel better when our TSH is around 1 or below, or even suppressed.

    It is unfortunate that we who have an autoimmune condition usually develop more. At present I have three.

  • Welcome to the forum, Dianegracely.

    Not the face of a monster but it is very puffy and looks very uncomfortable.

    Can you get copies of your most recent thyroid results with the lab ref ranges from your GP practice manager or receptionist. They'll enable us to advise whether you are optimally medicated or not.

    Myxoedema is worse when undertreated and recurrent infections are common when undertreated. As Shaws says, it is important to have your eyes checked out for thyroid eye disease. A high street optician should be able to examine you and advise whether or not you need to see an opthalmologist.

    If you have any results for ferritin, vitamin D, B12 and folate post those too and we'll advise whether you might benefit from supplementing.

  • I think you should see an endocrinologist and get to the bottom of this. No matter who you see, you should always retain copies of all of your blood tests. You own them, not your doctor or your lab.

  • I used to have a very puffy face each morning like yourself which seemed to ease as the day wore on. It was back in the day when I was always ill and didn't know I had a thyroid problem, like you it went on for years. You do need to get your thyroid blood results, ferritin, folate, B12, Vit D results from your doctor and post them on here, where the very well informed people on this site can help and guide you.

  • Hi dianegracely and sorry to hear your not feeling your best 😢

    I too suffered terribly with extreme face swelling - all around my eyes and across the nose. So much so, I felt like I was starting to look like a lion! so I feel for you - it's horrible! Doctors were also useless btw!

    Not sure if we have for the same reason (I have hashi's) but I found that a couple of extra large mugs of boiled water, with half a lemon squeezed in plus, a clove of garlic chopped - every night till it clears or for a few nights- worked a treat for me 😉 try it. I hope too that it'll help you. It saved the day for me.....Every. Single . Time.

    I also gave up all grains (bread,rice etc) and this helped massively and within days. Not sure why but the difference was miraculous😳

    Hopefully these might help you too. This is just the worst journey without all these awful symptoms 😣

    Wishing you well 😘

  • Also my tsh is now at 0.05 last (last test a few weeks ago) and I'm now starting to decrease my dose - no swelling now unless I'm ovulating???

  • Good morning rest assured it wont always be like that ( to quote my husband I thought you had just aged ) I used to think about cosmetic surgery especially for my eyes this was before I knew what was wrong 18 months later on 125 mg of levo most things alot better im sure you must need your levels checking again. Sending you best wishes and hoping you get some answers soon

  • Your husbands comment really made me laugh 'I thought you had just aged' absolutely brilliant and, dare I say it, a typically male observation - sort of thing mine would probably say too.

  • Hello, your myxedema(severe hipo...) is due to the infiltration of mucopolysaccharides in your tissue, that means is poor thyroid hormone in your body... or no conversion T4 in ->T3 (or a rare genetic disease->mucopolysaccharidosis, but I don' t think that is).

  • Poor you, you don't look like a monster even if you feel that way. Same thing happened to my face on holiday this year. I totally overdosed on french bread, croissants and pains au chocolate then one morning I woke up and my face was really puffy, just like yours. I got my oh to take photos and I have shown them to close friends who didn't recognise me. My feet and ankles were swollen too.

    I cut out the bread and went GF at that point, I tested to see if I had a gluten allergy and I didn't but I'm till avoiding gluten. I haven't taken dairy for years although I don't deliberately avoid it.

    I found a face cloth squeezed out in hot as I could bear water and held over my eyes really helped.

    I imagine a decent optician - ask around for recommendations for a good one - could maybe help or at least refer you to someone who could.

    I've got Graves' disease which is hyperactive thyroid but before I was diagnosed I had been being treated for constant sinusitis, toothache when there wasn't actually anything wrong with my teeth, ear infections, I also had my ears syringed regularly. so maybe you need your thyroid meds adjusted.

    If you can get your thyroid blood tests results post them on here and let folk have a look.

    Have you had yur vitamin B12 and vitamin D checked out also your ferritin and folates, people tend to feel healthier when all of those are high in their range. I also take 1000mcg vitamin C every day - I started after I had a dental procedure and it was recommended on the after care sheet, it was also recommended by my pharmacist when I started taking antithyroid drugs so it might be worth trying some vitamin C, you can't overdose on it - you just waste money because you pee it away if yur body doesn't need it.

    Hope you can get help soon, I can imagine how fed up you are feeling, what does your GP say anyway?

  • Hi, my facial swelling didn't go down until I used Armour thyroid. You look really under medicated. As others have said post your latest blood test results so we can help you.


  • OK everyone, I had an appointment today with my primary doctor and I asked for a copy of my latest bloodwork. My TSH is 1.54

    I am on 75 mg of Levo and asked my doctor to up it and he won't until my ENT doctor finishes HIS tests. He is sending me for these CT Scans of the vessels in my chest and neck. My primary doctor is saying 1.54 TSH is good BUT according to all of you it is not right??? Seems to me after all of you have said so and after all of the research I have done... it seems I need the Levo increased!!!

  • Was FT4 and FT3 also checked? That are the actual hormones, just TSH is not enough. I would say that you could increase, the TSH can be lower. But the FT4 and FT3 will give more information about how much hormone you actually have.

    Also some vitamins and minerals are really important to converse T4 (inactive hormone, that's the levo) in to T3 (active hormone).

    At least have vitamin B12, vitamin D and ferritin checked.

  • 75mg of Levo isn't a big dose. I know we're all different, but that was my starting dose. Do you have FT4 and FT3 results? We don't know if you're converting the T4 in Levothyroxine to the active T3, a TSH doesn't tell you that.

  • diane I can remember waking up to total moonface so round like a full moon, my eyes were slits, and this happened more than once, no doctor knew-- surprise----- but the lasttime I was given prednisolone to take the swelling down, and believe it or not I felt bloody well for a short time---------- now-- I suffered low adrenal function- at one time my cortisol was so low and I did some research and came up with low cortisol, and cortisol controls histamine, histamine makes you swell- so my theory for me personally was that ididnt have enough cortisol in the first place now it may not be yourcase as we are all different and it could well be the mucopolysac's as ADIN has said but it mightbe worth getting a blue horizon or genova check on adrenals, I have hashimotos too, I took pictures and glad I did.

  • No I do not have the T3 and T4 levels. I tried pushing my primary doctor today to write me up paperwork to have a FULL Thyroid test done and he refused he said my thyroid test was FINE. All they tested was my TSH!!!!!!!!!!!!!! grrrrr So I called my ENT doctors office and requested bloodwork be done for FT3 and FT4, because all I've had done was TSH. So I am now waiting for a call back from the ENT doctors office and hopefully they will have a paper READY for me to pickup to go have a FULL TEST done this week so the ENT doctor has my results when I see him next Monday.

  • ENT doctor just called me back. I am picking up paperwork tomorrow morning and going for the FULL thyroid bloodwork FT3 and FT4 as soon as I get the paper tomorrow morning. How long does it take to get the results???

  • I am sorry that you are going through all this. It is very brave of you to post your picture. I am in!! Really, tho, i barely leave the house.

    That is wonderful that you got the tests!!! That is great that you pushed through your illness and are fighting for your life!! Don't let those doctors keep you ill. If you contact Louise Warville, she has a list of good thyroid doctors in your area. In the US i get my labs back in 1 to 3 days.

  • Thanks, I know I hate posting an UGLY picture of me online, but I want people to see what I am really going through. It's awful. I hope to get some answers NEXT Monday after all of these tests are done. I refuse to give up, these doctors need to figure out what is wrong with me and FIX it. I am ONLY 50 years old, I'll be 51 next month. BUT still too young to have ALL of these medical problems. I've suffered with my Charcot Marie Tooth disease since age 5. At age 32 I had both of my feet totally reconstructed and had to learn to walk again. I was laid up for 3 years from the surgeries and recovery. My life has been hell, BUT I won't give up. ;-)

  • No..never give up!! We deserve to have a life! I have had many years of Hell myself and i want to live and enjoy what time i have left. I am going to be 52 this June and i am worse off than many 80 year olds. I am very puffy myself. I am doing a trial of steroids to see what deflates.

    I looked up your disease last night, had never heard of it before. There was a picture of the foot deformity too. I think we have bad genetics to thank for some of this. I have Hashimotos and my Pituitary got squished, when i ballooned up 30 lbs, in 3 months, with all that Myxedema and Fluid. I have rashes and odd spots on my skin, food won't digest well and very puffy and tired, terrible insomnia since 2010.. no improvements matter what i do. I did hear that it can take years to get better, once you find the right combo of meds and diet.

    How long have you had your thyroid issue and symptoms? Do you have Hashimotos now?

  • I thought that you were in the UK. Louise Warville, has no doctors list for US residents.

  • I don't think Louise / Thyroid UK maintain lists outside the UK. :-(

  • I didn't think she had a list for outside the UK. Did i accidentally write somewhere that she did? I can't find it. Sorry.

  • Up thread:

    That is wonderful that you got the tests!!! That is great that you pushed through your illness and are fighting for your life!! Don't let those doctors keep you ill. If you contact Louise Warville, she has a list of good thyroid doctors in your area. In the US i get my labs back in 1 to 3 days.

  • I assumed that she was from the UK..i didn't know.

    Is there a group for US residents? I thought i read that you had one started? My mind is not so good apparently, so maybe not.

  • Good job!!!!! In my country it takes 2 days.

  • I don't know if I missed it, but do you take your levothyroxine in the morning?

    If so, consider taking it at bedtime. I do !

    Some people find it makes a distinct improvement for them.


  • Yes I take my levothyroxine in the morning. Should I try taking it at bedtime instead and see if that makes a difference?

  • A lot of people do, I tried it but stopped and unfortunately I can't remember why which is no help to you.

    Glad to her you are getting full thyroid bloods done. Will they test for antibodies too. If you haven't asked already Get them to go the whole hog and do your for Vit d, B12, ferritin and folates while they are at it. You need those four things to be well up in their lab ranges to help your body process thyroid hormones.

    I always think it is funny that in the US you pay for everything yet your doctors are still picky about running tests. I'm in touch with a college friend from way back and we have both reached the age where our bodies are letting us know they need attention and I was amazed at how lousy and useless she thinks her doctors are - and how dissatisfied she is with hers and she is paying for her medical care.

    You could always try taking your levo at night and see what happens. Just remember to take it in an empty stomachs and not near food or milky drinks or other vitamins 😊

  • I'm afraid this won't be any comfort, but I've been trying for years to alleviate the severe fluid retention that being hypo can bring. Different things appeared to work for a few months each time, but the fluid kept creeping back. It's still the case quite often that it's bad all over my body; at other times just specific areas are affected, like face/eyes, hands/forearms and feet/lower legs. Until I can get the thyroid meds optimised, I've been advised that the fluid isn't likely to disappear completely, so it may be the same for you.

  • I just got back from the lab. They tested T3 T4 and T7 levels and TSH. My B12 and Vitamin D levels have been fine on all recent tests. I get a B12 injection every month. I now have to WAIT for the results. They said a couple of days and I don't go to see my ENT doctor until Monday. SO I am going to call their office on Thursday afternoon and see if they have the results yet, and once they do I will go pick up a copy of the results and post them here.

  • Diane, what is T7?

  • Not sure what T7 is, it's one of the ranges of the thyroid testing. It says T4 & T7.

  • Diane, when you get the results post them with the lab ref ranges in a new question as updating older posts can be missed.

    When you reply to a post click on the orange Reply post underneath the post you are responding to and the member will be alerted by email that you have responded.

    TSH 1.54 is a little high for comfort for many and most are more comfortable with TSH just above or below 1.0 but some people do need it lower or even suppressed to feel well. It's possible you need more Levothyroxine and a very low TSH to address your myxoedema. Dr. A. Toft, ex-president of the BTA, discusses this in Pulse Online, a magazine for UK doctors, in the link below.

  • Thank you I will start a new question when my test results come back. :-) And thanks for the information I will read it later on, I gotta go lay down now, I can't keep my eyes open... I'm so tired...

  • Hi Diane I'm wondering if levothyroxine is working for you at all? I took it for 2 years and it didn't get rid of my swelling. It wasn't until I took Armour that the swelling around my eyes, along my jawline and cheeks went. It also got rid of all the hard mucin under my skin.

    Just out of interest do you still have a low temperature?

  • What is Armour? Is it available in the USA and is it prescription only? I've never heard of Armour. And no, my temperature seems to be normal most of the time.

  • Hi, it's a natural treatment using dried pig thyroid. It's what everyone took before levothroxine. The beauty of Armour thyroid is that it contains both hormones T4 and T3. It's in tablet form and I don't know if maybe your Endo can prescribe it, you're in the US? Some enlightened Endos in the UK prescribe it but not very often. A lot of us buy it from internet pharmacies. Best to ask your Endo first though. In my case I had noticeable results after only a few weeks.

  • ok I got my RESULTS from the bloodwork... DOC says they are FINE. Here are my results with the normal ranges in brackets.

    T3 - 34 (22-35)

    T4 - 6.1 (4.5-12.0)

    T7 - 2.1 (1.4-3.8)

    TSH - 1.00 (0.40-4.50)

    UREA Nitrogen (BUN) - 16 (7-25)

    Creatinine - 0.94 (0.50-1.05)

  • Diane, I would put up these results in a new post to catch people's attention. There are others on the forum better able to interpret your results than I am, but at first sight your T4 looks too low in the range. Also, you might just want to check on your copy of the results that it's the free unbound forms of T3 and T4 you've had checked.

  • I did post a new thread titled Severe Facial Edema Results. :-)

  • Oops, sorry! Don't know how I missed it! :)

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