I understand that hypothyroidism/myxedema can lead to deposits of mucin under the skin; and I wonder if this is the cause of my persistent swelling. I have suffered since pregnancy with 'fluid retention' that never responded to diuretics.
May I ask if this is familiar? Puffiness around eyes, scalloped tongue, puffy jawline, bulges on inner edge of elbows knees and outer ankles, swollen fingers and swelling between knuckles. In addition to the swelling I have also developed lot of 'grainy' lumps in my fatty tissue - and it really hurts to touch. I had been told that it was a possible symptom of fibromyalgia, but would really appreciate your opinions.
Thank you.
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Joburton
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Commenting specifically on the scalloped tongue, this can be caused by multiple things - untreated or under-treated hypothyroidism, low iron, low B vitamins. I had to deal with all these things to fix my own tongue, it wasn't just one of them. My tongue was so swollen it altered the way I talked.
One of the things that happens when people are hypothyroid is that some body fluids reduce in quantity - so dry eyes, dry mouth, dry skin, and low stomach acid are all common.
With low stomach acid our food is broken down less efficiently, extraction of minerals and vitamins from our food is poor, and so we become low in lots of nutrients.
It really doesn't help that the symptoms of low stomach acid feel very similar to the symptoms of too much stomach acid. So people take antacids, and doctors prescribe PPIs to suppress the production of stomach acid. What most of us really need is more acid. This gets discussed on the forum quite a lot. Do a search for the word "betaine".
The end result of all these things is that hypothyroid people are deficient in lots of nutrients and we need to supplement. It is a good idea to get tested before supplementing, if at all possible. As a minimum, testing for ferritin (iron stores), vitamin D, vitamin B12, and folate are all very important.
Iron - It isn't a good idea to supplement iron without knowing if you are deficient or not, because the body has no mechanism for getting rid of excess.
Vitamin B12 and folate : It's a good idea to test before supplementing because Pernicious Anaemia is common in people with hypothyroidism, and getting a diagnosis is almost impossible once people start supplementing. B12 should be supplemented together with a good B Complex - it isn't a good idea to allow the B vitamins to get out of balance.
Vitamin D : This is a fat soluble vitamin, and although having an excess is probably very rare, it is not a good idea to overdo it. Low levels lead to joint and muscle pain.
There are lots of other things that people supplement. Whether they test them all or not, who knows. I can't afford to test everything I'd like to, so I supplement some things anyway if I don't think I will do any harm - but this is purely done at my own risk.
Some nutrients that get mentioned :
Magnesium, zinc, copper, omega 3 fish oils, selenium, vitamin A, vitamin C, vitamin E. There are probably other things I've forgotten.
Yes, absolutely right..... Mucin is nasty stuff... It can get anywhere including your tongue, giving you the pie crust tongue. It puffs up your face, arms, legs..... Everywhere.
Fibromyalgia was considered to be a result of too little t3, the hormone which is made from levothyroxine (t4) according to the late Dr Lowe.
Sounds like you might not be on enough meds..... What are you latest test results like?
Never had T3 or T4 tested to my knowledge - only recently found out about having thyroid antibodies and a within range rise in TSH but wasn't provided with figures. Only just started on Levo 25mcg - so it will be a while before I'm due more bloods. I've been reading comments on different labs results on the forum and am keen to know (and share) my next results!
Unexplained weight gain (swelling) is one of the hypothyroid symptoms and would have been diagnosed and medicated as such before the blood tests were introduced.
Hi I suffer from fybromyalga and I'm self medicating on t3 do you think maybe I'm not on enough ? Have thought on possibly increasing slightly as pain is particularly bad just now
Lola, I've read some of your past posts and see you have been at this a while. What have you learned so far. Sometimes too much T3 can cause pain as well.
Hello have been diagnosed 3 years ago then left to struggle on levothyroxine . I started to self medicate on t3 about a year ago , I'm alot better having also lost now over 3 stone of original 4 stone I had put on, brain fog gone hair and nails better etc but having had osteoarthritis for 5 years in the past 18 months also now have fybromyalga and polymyalgia in neck and shoulders , resisted steroids so just trying to handle the awful pain that these 2 muscoskeletal diseases bring .il let you know if increase helps but I don't think at all that I'm on too much and have brought this on myself
May I ask how much you are taking? I do think T3 is called for especially when too ill to use much of the T4 in the NDT. Have you considered going back to an NDT that has both?
Hello I'm on 69 mcg t3 . I've never tried ndt but levothyroxine was no good for me , I got more ill and was laid in bed with no life getting fatter and fatter
I do understand and agree about levo. It's a synthetic prehormone which many find disagreeable. It was produced in the 1940's or 50's when drug companies found they could reproduce it. Armour thyroid the natural porcine was used since the 1800's very successfully. The compound includes much of what our own thyroid would produce one of which is calcitonin. Lately articles seem to point out the importance of calcitonin.
Your T3 may be equivalent to between 2 and 3 grains of NDT. I don't think any higher than that would be good, so, no I wouldn't increase T3. In fact, you could try an experiment by not taking any T3 for two days. It won't cause that much harm and if your pain is less, you might consider a change.
Of course, your pain can also be do to a low vitamin D level. Almost everyone in the northern hemisphere is deficient in D.
LOL, thank you Rod. Keep me on the level. I tend to round off what I consider insignificant details. Of course, if this were 1950, I might consider that a significant detail.
I was quite low on vitamin d but supplement now for over a year but I will consider trying no t3 for 48 hours but I'm not sure I agree that my t3 shouldn't go higher as with blood testing I know I still have some room for a little more if needed
You definitely know best BUT blood levels may not always give the accurate story.
I found that improving D levels extremely difficult. Converting sunshine through the skin may not be efficient especially as you age and high doses of D3/K2 may be necessary.
Hi Jo, I would say yes to both fluid and fatty deposits. I was undermedicated often over the years and developed these along my lower spine that press on nerves.
I don't know if there is an explicit article about mucin in here but since you are new, I think you'll find any or all of the links at this website very helpful. I've known about Mary Shomon for twenty years and she has fought for hypothyroid patients as herself over that time.
The ones I have are called polyneural cysts and all I have read is that they have to be surgically removed but, listen, I have been ignorant for fifteen years. This is why I am here encouraging all who still have a chance to reverse some of these oddly connected things which I am sure is due to badly treated hypothyroidism. I didn't know about T3 and adrenal connection, etc. etc. etc. back then. Trying to catch up for all those dumb years.
I had an enlarged heart but for the past couple of years it has been shrinking back.... I am due another scan next month so will be interesting to see if its the right size yet.... Have been well medicated for the past four years,.... Was on too few meds for several years though.
I had an article about them and showed it to several physical therapists but they just called them lipomas. Other articles just say what they are but not what to do about them. One piece said not to massage directly but possibly around them. Do you have them on your lower back?
Jo, I do not feel Thyroxine is a good treatment. It is a CHEAP treatment although some people think they are doing okay with it, I truly wonder because some symptoms are not that apparent. Of course, that is up to you but you can get an NDT on your own. Your GP probably won't approve.
No I have them mainly in my thighs and upper arms with a few on calves, forearms, abdomen and around ribs. Definitely lipomas, but they're not just subcutaneous, they're anchored deep in the tissue and muscles and press on nerves. Can't bear any pressure from tight clothing or massage, or sometimes just a hug can hurt.
If you have that many and they are definitely lypomas then you may well have Dercums Disease which is found more commonly in people with that are hypothyroid, although not always. I am covered in them and I mean dozens and some are quite painful especially those on my thighs. I have had some removed under local anaesthetic from the back of my thigh in the past and will be asking for more to be removed but there is a reluctance to remove some of them because of forming around nerve endings. You'll see a grown man cry when my dog comes and nudges me on the thigh and gets me on one of the lumps.....ridiculously painful for such light pressure....
I've had my suspicions that it could either be lipoedema or dercum's, but never been able to get taken seriously! It has been suggested they are a symptom of fibromyalgia too.
Mine are no more than bean sized and aren't visible, but boy can I feel them! My upper arms are the most painful parts - cant even bear a tshirt sleeve digging in nowadays. Have you every managed to get a diagnosis?
I wish mine were so small lol. They range from bean to pidgeon egg size although most are somewhere in between. They are certainly visible too. I casually mentioned to my GP one day about lumps...he had a quick look and said Dercums...look it up ! I've never had any kind of 'official' diagnosis although I'm going back to ask for further investigations....or something!
I think larger lumps are a feature of Dercums so maybe you dont have it.....hopefully :0)
I know some people diagnosed with Dercum's and they would be delighted to hear about your GP being one of the enlightened few! Lol.
Do you use facebook? There is a lovely group of fellow lumpy ladies and gentlemen mainly from the UK who belong to a lovely private group, I can direct you to them if you're interested. There are various categories of dercum's - I believe I fit in the Type I (generalized diffuse form).
I recently found a photo of me - pre-diagnosis ! Fingers and wrists were very puffy - as was my face ! I also suffered with horridly swollen ankles when I flew. I remember not being able to remove my rings easily. Now all is fine - but am afraid it does not happen overnight - it can take a long time. It's quite a journey. Am sure once your dose is optimal things WILL improve....
I too had all these swollen ankles , rings wouldn't fit . My face was so fat was not me in the mirror , thankfully t3 changed all that but marz is right it takes time and you cannot rush it
You know even on ndt and all my levels good and b12 of over 2000 I had mucin and the strangest thing happened by chance that literally made it go away was I was put on norethisterone , synthetic progesterone, or progestin for peri menopause heavy prolonged period. Anyway it went, I couldn't believe it, first week 7 pounds fluid gone. Then another 13 to now in the last 8 ish weeks.
I briefly read something that the thyroid needs progesterone to function properly. Well thought I'd share. It's true. I'm still a bit overweight but I am not jelly / fluid like I was at all.
• in reply to
Jobeth,
The endocrine system works in synergy and there is a distinct intricate connection between our thyroid, adrenal glands, and sex hormones.
A women’s progesterone levels natural falls as she ages and can create “estrogen dominance”.
Estrogen dominance causes the liver to produce high levels of a protein called “thyroid binding globulin”, which binds the thyroid hormone and decreases the amount of thyroid hormone that can be assimilated into and utilized by the cells.
By adding progesterone, you encouraged your thyroid meds to work.
Good news for you.
Flower
Jo,
The fluid that accumulates in the tissues causing puffiness and thickness is mucin and due to myxodema. Usual diuretics will not get rid if it but it should disappear when you are optimally medicated on thyroid hormone replacement.
Low thyroid hormone also encourages poor kidney function which will mean poor blood filtration & fluid balance so could cause facial/ankle puffiness.
According to Dr Peatfields book (page 55) .. Poor kidney function can lead to a release of hormone renin which is metabolised into angiotensin which increases blood pressure.
You may find when finally optimally medicated high BP improves too.
As previous posts have advised 25mcg Levo is a very small dose and can actually make the thyroid even more sluggish so producing less hormone than before medicating.
Most interesting what you write Jobeth about progesterone (a hormone I hate, unfortunately). With regard to Mucin I found one dermatology site that claims that it can be treated (on shins at any rate) with topical corticosteroids (among other techniques). I thought I posted about this article on this site but maybe I failed to finish the post. Have a look at dermnetnz.org/dermal-infilt.... It says, under "Treatment": "... What is the treatment for pretibial myxoedema?
Pretibial myxoedema is often asymptomatic and mild, and may require no treatment at all.
If symptomatic, treatment options include:
Minimisation of risk factors:
Avoid tobacco
Reduce weight
Normalise thyroid function
Compression stockings, which can be worn to improve lymphoedema
Mid to high potency topical corticosteroid, which are usually recommended under occlusion (eg plastic cling-film wrap) nightly or every other night to enhance effect
Other therapies reported to be successful include:
Intralesional corticosteroids
Systemic steroids
Pentoxifylline
Octreotide
Rituximab
Plasmapheresis
Intravenous immunoglobulin
Surgical excision has been successful in case reports, but it is generally not recommended due to the risk of pretibial myxoedema developing in injured skin
What is the prognosis for pretibial myxoedema?
The prognosis is generally quite good. Most patients with asymptomatic pretibial myxoedema do not require treatment or follow-up.
The myxoedema clears up completely in the majority of patients with mild disease.
Even with more severe disease, it resolves in more than half of patients after several years. The elephantiasic form is the most difficult to treat, and is the least likely to clear up.
The likelihood of remission depends on the severity of the initial disease rather than its treatment. "
I find it fascinating to look at the really old & sometimes quite scary black n' white photos of the patients with an extreme untreated manifestation of hypothyroidism causing myxoedema, with their grotesque puffy faces and swollen bodies .... poor poor people ... and then after thyroid hormones treatment .. they look better and well (.. to an extent of course)..
Thank goodness we aren't left to get to that extreme .! ..
Fuid started gathering in my legs, spreading quickly to my torso. At first I thought nephrotic syndrome but my suggestion was ignored as was my concern about heart failure. Instead I was sent to dermatologists to rule out allergy, and rheumatologists to look for a potential cause. Doctors told me my thyroid function was stable, even though I was displaying every conceivable sign and symptom of myxoedema. All sent me back to the cardiologist who said it was nothing to do with him. I grew bigger and bigger, my liver began to swell and my GFR began to drop, still no one took any notice. When I complained about the lethargy and tiredness and inability to walk further than a few yards, one doctor said "you can obviously get as far as the biscuit tin".
I thought if I don't do something myself, I will die. It was then that I started adjusting my dose of levothyroxine according to my symptoms. This was tough as I could barely think. After 2 years wearing slippers, I can now wear shoes again. I lost 3 kg in fluid but still struggle to keep the fluid at bay. I am not out of the woods yet, but I wouldn't be here today if I waited for medical professionals to sit up and take notice.
I'm shocked at the biscuit tin comment, but do recall a doctor once advising me to serve up more vegetables with meat and carbs!! At the time I was barely eating enough to keep a fly alive, lol - However my husband also used to wind me up and joke; Fluid retention.... fact or fat? He has since wisely shut up and only occasionally slips
Thank you for sharing and proving that we can take control.
Yes, you are right. It is perineural cysts I think. I do have an article on paper but would have to dig it up. They would have to untangle the cyst from the nerve to do the surgery. I'll put up with the pain. I have heard of Tarlov as well.
I was on Synthroid for the first six years and feel that is the reason they persisted. I looked back and saw my TSH was over 3 at times. I certainly hope the patients now know much more than I did.
Jo, you are a true victim of the profession. I get very distressed about this. I'm in the U.S. and while treatment here is no way superior to the UK except for possibly a few brilliant specialists out there, they have not let me get into the predicament as you have.
I'm not a doctor but I would say these are all the ramifications of a very low metabolism and hormones out of kilter. You must work your way back somehow. It's really beyond me but ask for recommendations. I know some people have gone private and found help.
This man has a load of videos on YouTube. He taught anatomy for years for one and knows all about nerves and hormones.
Also you need to increase from 25 to as much as your adrenals will allow. I know it is recommended to take it slow but I think I increased every week at first. It was so long ago, I can't exactly remember. I also wish you were taking a natural desiccated hormone since it has all the componEnts of T4 to T1 and calcitonin. Levo is T4 ONLY.
The bit of T3 in the natural hormone goes to work right away. The T4 in Levo needs to go through the liver to be metabolized (hopefully) to T3. And then the FT3 needs to enter cells (all your cells need it).
I truly hope you have time to learn these things, Jo.
I think I need to get back to the GP next week and have words - I have learnt so much just over this weekend on this forum!
I can't believe I have been fobbed off for so many years. I lost count of how many times I returned with the same worsening symptoms and not one of them bothered looking at the whole picture because my TSH was 'normal'
Good luck and be assertive (while you can still think straight), hopefully, your GP will listen and help you. Unfortunately, your swelling won't go away overnight...hang in there.
Flower 007, I find it fascinating too, but more because it is instructive and made me act to seek help. I don't know where I have mentioned it on this forum before, but I am a psychiatric nurse and I have seen some appalling consequences of failure to diagnose thyroid problems and B12 deficiency. One man deteriorated over a period of about two years. He had been a frequent flyer for depression, but he started coming in with more and more bizarre symptoms, notably an inability to swallow that prevented him from eating, so he lost a lot of weight. He stopped making sense when he talked. He stood out in the hot sun (Australia) on the patients' balcony and was burned to a crisp because of the ward failure to supervise him due to the prevailing belief that he was 'doing it on purpose'. He became violent. He was the subject of ward conferences between psychiatrists who all concluded that he was seeking attention. Then, as he deteriorated into a wild animal, they concluded an unknown dementia, but behaved as if he was doing it on purpose. One day I went through his history and noted that, although diagnosed as hypothyroid, he had not been receiving his thyroxin. I wrote a three or four page synopsis on his history, treatment and presentation, and called attention to his long-standing diagnosis of Graves disease and the failure to give him his thyroxin. I knew that this document would have to be acted on because it is dynamite legally. Putting stuff in writing is very powerful. If his relatives choose to pursue the hospital my notes would be extremely helpful for them. At the time I was also asking a lot of questions about how we were treating various 'problem' patients and I appeared in a coroner's inquest about another patient who I had attempted to resuscitate after she drowned in a bath and I testified against the hospital lawyers who attempted to persuade staff not to mention some symptoms prior to the death.
When you think of it, it is quite amazing that perhaps six or eight psychiatrists, all associated with teaching hospitals, and numerous interns and registrars, specialists and nurses, all seemed to overlook the blindingly obvious.
After testifying I sensed that management would go all out to find ways to make me look incompetent for revenge and so I would need to find other work before they did this. I remember taking some videos out of the hospital library in my last weeks there. One was by an endo on thyroid problems and it said that the muscles of the throat became weak in hypothyroidism (mda.org/disease/inherited-a... and people stop eating because they simply don't have the strength to swallow. I thought of that man. His girlfriend had stuck with him through and through. I hope that his family one day will use my nursing notes in court.
But I have seen so many abuses in psychiatry due to the assumption that thyroid and B12 deficiency were rare - possibly because they are known to be treatable, and assumed therefore to be treated - as well as due to the mad parameters of 'normal' blood levels and what the med profession choose to look at. And due to the assumption that so much can be explained as of emotional origin or some other kind of ethereal origin rather than due to physiological processes.
I found it exceptionately difficult to practise psychiatry over those 20 years at that last hospital. I found that psychiatric treatment had deteriorated since 1977 when I first graduated, believe it or not. Probably before the 1980s there was more respect for those diseases and we routinely tested for thyroid, diabetes, syphilis and probably for B12 (but I don't remember the last). I have had to operate within the bizarre social norms of the group-think health industry. I could not make the industry see things from my perspective, although I would often find agreement in nurses and doctors on the ward, but they would usually say quite candidly, that they were afraid of losing their positions if they bucked the mainstream. Patients really liked me, of course, as you can imagine.
Despite my understanding of this problem, it has also taken me a huge long time to purposefully seek out doctors who are known to use natural thyroid and to look more comprehensively at thyroid problems or to treat myself with B12. I have been using B12 (am about 1,300 blood) but have not commenced thyroid treatment yet by the way; I just got my blood results back and they indicated absolute borderline low T4 and low T3, a TSH above 2, low zinc, low D and (but it was not a morning urine specimen) low uptake of iodine. The doc who did the tests is not due back from holidays until 30 October. I went to see another due to worry about increasing leg swelling. She sold me a practitioner range 'Thyrobalance' and wanted me to come back for more tests in two months, however she is very expensive, so I think I'll follow through with the guy on 30 October. I also went to my local GP clinic and had some renal and liver tests done just in case, which will be ready on Tuesday. (Yes, doctor shopping :-))
Sorry I hadn't replied earlier Astrid - Your reply literally took my breath away; was reeling at the lack of care you witnessed in you previous employment. I hope and pray that through your efforts, those responsible will be held accountable.
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So, are vitamins and mineral supplements the way forward?
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Swelling
Swelling/odema/lipodema 
Milk causing throat swelling
