Myxedema...wtf

Ok so I apologize for cluttering up this forum, I am a mess right now!

Basically I seem to have myxedema, thick skin all over. I'm now shit scared because I can't find out whether this is dangerous or not! I have seen stuff about coma, death and brain damage from myxedema and now I am confused and wondering if I should be calling emergency...?! How do I make the distinction between dangerous levels and what can wait the few weeks until I get meds? Is it normal to have myxedema? Am I dying? Thanks guys, you are saving me xxx

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  • Myxoedema is the accumulation of a gel-like substance in/under your skin (and elsewhere). But it is also used as a general term for hypothyroidism.

    Very severe hypothyroidism can result, eventually, in "myxoedema coma" - but it is very poorly named. It doesn't always mean that a person is unconscious (though in the extreme, they might be).

    I quote:

    Myxedematous cachexia is characterized by an intensification of all symptoms and signs. There is great thickening of the tongue, thickness, dryness and coarseness of the skin, thickening and brittleness of the nails, falling and brittleness of the hair, progressive decrease in activity and responsiveness, and a closer and closer approach to a purely vegetative existence. Although the mucous edema persists – and indeed tends to increase – body fat may disappear, so that actual wasting takes place. After this stage has persisted for an indefinite period of months or even years, death takes place because of intercurrent infection, congestive heart failure, or both. The final symptom is coma, which may last for days. In the untreated patient, the length of time between the first symptoms and death may be as long as 15 years. It is, fortunately, seldom nowadays that one witnesses the natural termination of the disease. It is seen only when the patient is already moribund when he or she comes to the physician, the diagnosis previously having been overlooked or where severe myxedema is present in association with another serious illness. In the Report on Myxoedema, which was published before the discovery of the cure of the disease, the duration is given as 10 years or more. The evolution of the symptoms of myxedema is slowly progressive. If one compares patients with myxedema of 3, 6 or 12 years’ duration, although all may have classic symptoms and identical thyroid function test results, the clinical picture will be more intense at 6 years than at 3 and still more at 12. The mental manifestations, and the integumentary changes in particular, intensify as the years pass. Such severe manifestations of hypothyroidism are rarely seen in the current era. Patients and their friends and relatives are often strangely unaware of evidence of myxedema. Often patients are identified during treatment for some entirely unrelated disorder. Myxedema has been called a “consultant’s diagnosis”, because the changes that appear as the disease develops are so subtle and gradual that they are often overlooked by the patient’s family physician. This fact is becoming less true with the ready availability of objective diagnostic tests.

    thyroidmanager.org/chapter/...

  • Thanks so much, that is something Google didn't find! Hopefully that means another month or two won't kill me... I will try to relax. Thanks xx

  • The word "insidious" could have been invented for hypothyroidism. It creeps up so slowly, and so subtly, all too many people notice little, or ascribe what they do notice to age, or other issues.

    It is rare for hypothyroidism to be an emergency - except in extreme cases, very long duration, alongside other diseases, and in pregnancy.

    It is rare for hyperthyroidism to be an emergency but thyroid storm does happen (we have several people here who have survived that) and, when it does, it is very serious and urgent.

    There is lots Google doesn't find!

  • Yes, if only google could find a cure!! Thanks for your reply. Do you think I need to worry that this might become serious suddenly? Any big signs to watch out for? Cheers much xxxx

  • It is very unlikely - you managed a response within ten minutes. If you were severely hypothyroid and getting worse fast, you couldn't have done that.

  • Ha ha, well that's good to know! :) but does that mean I'm safe now, for say a few weeks - or could it suddenly get worse at any time? I'm sorry for the onslaught of questions, I am new to this and have no clue :( my throat feels swollen and the glands a bit tight/painful, this has developed in the last week. I don't have a cold or allergies. I'm just worried it is trying to progress into something serious because as I say I has no clue! Thanks, with much appreciation xx ♥

  • Hypothyroidism rarely does anything suddenly. Symptoms can come and go, but get worse very slowly. Some people live with it all their lives and never know they have it, like my mother who died at 80 and my great aunt, who died at 80+, and my great grandmother, 90+.

    I wouldn't have known they had it, either, except that I now know what it looks like and I can see the old photos - a family of hypos! On both sides!!!

    Don't worry, you'll stress yourself out, and that's not good for your adrenals. You'll be ok for some time yet - if you have to be - but Don't miss that doctors appt in... June, is it? Let us know how you get on. x

  • Thanks greygoose, that is very reassuring. Thank goodness you have cracked the hypo code for your family!! I hope to get an appt a bit earlier by feats of persuasion, I will definitely let you know how it goes :) xx

  • Well, I Don't know about cracked it! My brother and my daughter - whom I suspect of having it - will not entertain the idea! So, they're going to have to learn the hard way!

    I'll keep my fingers crossed that you get that early appt. :)

  • My onset was sudden..read what i wrote, on here..but, i didn't die, nor did they find anything wrong with my vital organs, even tho i swelled up like a balloon practically overnight.

  • My symptoms of Hashimotos were sudden and frightening, quite the opposite that i read. First, 1 morning i awakened very nervous, trembling, heart racing..continued on to weakness, extreme weight loss and diarrhea. This went on for about 9 months and many trips to the doctors and hospital and told it was psychiatric..horrifying!! Then it subsided and i had about 8 good months. Then, after i was pulled cold turkey off all the psych. meds i was put on, i developed terrible insomnia. One morning i awoke with my eyes, face tongue..everything all swollen. I gained 7 lbs overnight, i had acne all over my body too. I was horrified. I went on to gain 30lbs. over a 3 month period and no doctor checked my thyroid levels. I was sent to a psychiatrist, dietitian and a cardiologist, urologist and gastroenterologist. I have seen over 20 doctors and been to the hospital many times. I now avoid doctors like the plague.

  • That sounds like a rollercoaster ride! How scary and horrible for you. Doctors are definitely a plague, I only go if I absolutely have to or to get blood tests and stuff so I can treat myself. The trouble is it's a sickness service, not a health service. You have to be obviously dying of something they can sell you drugs for before you get any actual help whatsoever, and even then they usually make it worse left to their own devices. I hope you are feeling better now. Xx

  • good luck and keep us informed with your progress.

  • That's disgraceful Faith, sounds like a bunch of neglectful doctors to me. I tend to think that they seek advice from doctors you have seen previously without even looking at you as a patient. It's a dreadful and neglectful way to treat patients.

  • This is really a scary position to be in, isn't it. You go for help and they don't know what's wrong with you, but you find it on the forums. We are all alone, if we can't use T4.

  • do you feel better on T3 Faith?

  • The sad part is, not really, but so many do that it is worth a try. I could have something else wrong like the low cortisol causing symptom, i have to do further investigating.

  • well it sounds like something isn't right faith

    I haven't tried T3 as yet, my gp nor my endo would let me have it

  • I have other health issues, like auto immune disease. i believe that t3 is the best med for myxedema, as it doesn't have to be converted. It has been used to treat fibromyalgia and depression. Dr. John Lowe's studies on t3 are worth looking up.

  • I was almost untreated for most of a year with no thyroid at all, and although I could hardly get out of bed, my consultant wasn't at all worried!

    As long as you are getting dressed and washed, able to sit up in chairs, leave the house when you want, you are far from that point :p

  • Thanks silver avocado (if only such a thing existed! I love avocado). I am capable of all but leaving the house when I want, but that's due to another issue altogether called chronic miss the bus syndrome. I've got it quite seriously ;)

    Thanks xx

  • Hehe :) Hope you're feeling less worried. Good luck for your appointment

  • Much less worried, thanks to all you lovely people! Thank you xx

  • Hello superparrot,

    Why do you think you have Myxedema?

    Reading through your previous posts I understand that you haven't received a diagnosis for hypothyroidism yet.

    Untreated thyroid issues can have far reaching effects and some very strange and weird symptoms but Myxoedema coma is a loss of brain function as a result of severe, longstanding low level of thyroid hormone in the blood (hypothyroidism).

    If you feel you are going into a coma you need to seek medical advice asap.

    flower007

  • Oh I don't feel like I'm going into a coma yet! I just read about hypo and cameaacross myxedema as a symptom. I have the strange non pitting edema thick skin thing all over, and have for a while. I was concerned that it might be dangerous or urgent as I have seen it linked with coma and death. I was wondering if anybody else has had this symptom (as hypo is the only thing that causes it) and how severely?

  • I have it - it's horrendous and worsening day by day, I am a couple of days into a week off work and can barely manage the drive to school - swear the stuff is in my brain too as I have little concentration even for crappy TV. Nurses at work have warned me to be careful not to knock the skin on my legs as it could ulcer, they can see the swelling so why the bloody hell cant the GP - I empathise with you x

  • Oh goodness, that's so unfair! I hope it is some comfort to you that your suffering is reassuring me (probably not!) But it is, so thank you xx I really hope we can sort it out soon. This thyroid thing has knocked me for six, wasn't expecting it at all. Good luck! At least we're not alone! ♥

  • Superparrot, I've had that thick skin (mucin) thing all my life. I was just called fat! And there I'm talking about 50 years before diagnosis! It didn't kill me. And I'm 70 now.

    In fact, having Hashi's, and some hyper swings, it sometimes went away. Now I'm well treated, it's going. It's just round my ankles and lower legs now. But it comes and goes.

    It's horrible, but it's not going to kill you. The skin thing isn't linked to myxedema coma in anyway. It doesn't cause coma. They are just two different symtoms of the same disease, which is why they share a name. Don't worry! :)

  • Oh that is excellent, thank you! And I'm really glad you're doing so well! Will you look at me posting here making a fuss and panicking everyone, and you just quietly deal with it, lol! You're a legend. Thanks xx

  • Oh, SP! l wasn't like that in the beginning! lt's just that I've had 15 years of practice.

    In the beginning I had no idea what a thyroid was. And no doctor ever explained it to me. I had to learn it all by myself. And when l asked doctors questions, I got responses like 'how the hell should I know'! Oh, really? I thought you were the doctor and I was just an ignorant patient! lol

    Of course it's difficult to understand in the beginning - doctors Don't even understand it themselves - but you'll pick it up. There are complicated bits but the basics are relatively simple. Just stick with us and you'll soon know a lot more than your doctor. :)

  • Well thank goodness we have this resource of sanity here! Doctors have always seemed thoroughly misinformed wheneverI have cconsulted them about anything. .. so it's a trend ;)

    Thanks for your help

  • You're welcome. :)

  • What are you going to do for treatment?

  • Have you tried Armour? That got my swelling down more than anything. Still have oedema around my ankles though, but I can pinch up skin now whereas before it was rock hard everywhere. Noticed a big difference in my face too.

  • Thanks for your reply. Not that comfortable taking armour as I am vegetarian. However I'm glad it has worked for you! I also don't have an actual diagnoses yet so I will have to work that out first. Thanks for your time and concern xx and like everyone else I love your cow :)

  • Unless your labs are really bad and IF they even do the right ones, you may not get a diagnosis. T3 is not animal and if dosed high enough, can really help.

  • I was only having the labs as a formality, and to checkanantibodies and stuff. I intend to begin t3 as soon as I know where I'm at, I definitely won't be taking any doctors advice ha ha :) these are the people who told me I had a food addiction when I was anorexic!!

  • I really don't understand Anorexia and Food addictions..but if the doctors treat it like thyroid, then i would question it. I just ate when i was hungry and wish i could eat when my food won't digest. It is very sad, because i can't control my weight now, being as its fluid and swelling..demeaning and frightening.

  • I know the feeling! And everything that would normally help lose weight makes it worse...! I wish you luck xx anyone who has anorexia scientifically cannot have food addiction (and it is debated if such a thing exists). I was not treated for thyroid because of that, it was just an example of how unhinged doctors can be! ;)

  • Your Anorexia may be a symptoms of hashimotos or hypothyroidism...it has many symptoms. I have gone for months at a time with no appetite and sometimes the food i do eat, won't digest, so i have to throw it up. I suppose some idiot doctor could say i was bulimic or maybe anorexic.

  • I am no longer what you would call anorexic...far from it!! Infact Iam quite overweight now... but unfortunately the anorexia was most definitely on purpose, rather insidiously taking over my mind and I was veryhhungry all theway tthrough, just not let myself eat. I do not do that anymore, thank goodness!! II'm pretty sure that was the cause rather than the effect of this current problem, but I see that it may be the other way round for some people. I really hope nobody ever puts themselves through what I did! Best xx

  • Maybe the Anorexia, with lack of nutrients, is causing a temporary condition> Please stay in touch and let me know what your labs say. You could have a high reverse t3 right now, due to low iron, b12 or something. If you can get a private test done with all thyroid hormones and antibodies, maybe do that.

  • I thought for a while that my symptoms were caused by hypothyroidism, but like many others, my GP said my bloods were "normal". I knew my fingers were swollen as I had to remove my rings. I didn't notice my face until I needed a passport photo, I thought "how long have I looked like this?". My face was very puffy/swollen, why didn't I notice when I looked in the mirror every day? Why did it take a photo for me to notice my swollen face? Why didn't anyone else notice it? Strange!

    I'm now searching through photos to try to pinpoint when it started. It's getting back to normal now I'm having treatment but I still have many symptoms😕

  • Yes that is weird, though it's amazing what people don't notice if they see you often. Having been anorexic I am excessively sensitive to the slightest change in my body, so I tend to notice everything... but very few people have remarked on my very rapid weight gain, when I tell them they're like, "oh really? Gosh I honestly hadn't noticed" - which is bizarre as I have literally more than doubled my weight in the space of a year!! I hope your treatment works out well for you xxxx

  • Perhaps they are being unhelpfully diplomatic in view of your previous eating issues.

    superparrot, what is happening with your hypothyroidism diagnosis?

    If you have a thyroid problem causing all these symptoms you need to get medicated asap. These problems won't go away without thyroid hormone medication and the longer you are left undiagnosed, the longer your recovery period.

    Have you had recent thyroid hormone blood tests? Ask your doctor for TSH, T4 and T3 to be tested.

    Also vitamin B12, vitamin D, folate and ferritin as people with long term thyroid issues are often deficient in any of these. Deficiencies may stop your meds working properly.

    Also in view of all your symptoms, I would also ask to be tested for thyroid antibodies to ascertain if you have Hashimotos Thyroiditis.

    Good luck

    flower007

  • Thanks flower, I have not been able to get a doctors appointment yet as they are full and I am not in any other practice catchment area... it's out for the weekend of course, I will try again on Monday. I have taken iron for months. I have got myself b vits and I also have iodine but I haven't taken any yet. I don't know what to say to the gp to persuade them to a) do the right tests b) do them urgently c) give me the actual results. I have actually ordered cytomel just in case, obviously I won't take it if I don't need it, but I might and would have to wait ages more for it to get here after they finally gave me my results. Everything is somewhat hypothetical now (excuse pun). I also take magnesium. I eat lots of fats, fruit and veg, and am reducing dairy, should I lose the gluten as well? I am not cutting calories, I am always hungry and I think my body is trying to say it needs energy! But obviously whatever protocol everyone else follows would take precedence over my lack of experience, so I would be very grateful for advice :) y'all are awesome here, can't thank you enough xx

  • Excellent advice, flower007.

    My thyroid became hypo after I began lithium treatments for Bipolar. I've taken Thyroxine since then, 1986. I knew nothing about the thyroid back then and have just trusted Dr.'s monitoring and going up or down on prescribed Thyroxine all these yrs. As of Oct., '14, however, I've had a nightmarish existence since a P.A. 1st diagnosed my levels to be too high, then too low. I take Meds for Bipolar and have HCV that I aquired from blood transfusions in 1987, at childbirth - when I lost too much blood and had 18 hrs. Of blood transfusion. They didn't know about HepC until 1992.. When I was diagnosed w/it 21 yrs later, I went through 48 wks of Interferone self administered injections, ribs iron and Procrit injections. I learn now that Interferone should not have been used, as I have no sleep ( lost from a bad car wreck in 1975). AND because I was on Bipolar Meds. Also, Interferone can screw up your thyroid. Obviously the Dr.'s back then did not do any homework. The HCV IS STILL WITH ME, my insurance co. won't pay for this new 'awesome' treatment because my liver isn't sick enough!!!!

    My point I guess is that now my thyroid is so royally screwed up, I don't know where I'm going! I'm 61 now, and just NOW learning how precious our thyroid is. In the process of seeing 2 endo's to try and get my thyroid back to 'normal'. You've GOT to understand how it all works; the TSH, T3, T4..... What Meds affect or are affected by a hypothyroid. Most Dr.'s have NO CLUE about the thyroid. Best we can do is teach ourselves all we can absorb so we can help educate these Dr.'s who can inadvertently 'kill' you with their ignorance.

    The dark depression I've been in/ through for the last 7 months is mostly thyroid- related. It's lonely and frightening when you realize your Dr.'s are clueless. And others cannot begin to understand what you're going through if they haven't experie any thyroid problems. Boy - THEY are the lucky ones!

    If we keep in touch w/ each other and share our worries, fears, experiences...then we can at least have SOME quality of life.

    Thankyou each & every one of you for sharing. It dries my tears a bit & I don't feel so horribly alone ...❤️❤️❤️

  • Forgive my typos. iPhones have their own vocabulary.. It should have read " no spleen". And Ribivarin ( not ' ribs iron).....I hope you can bear with my miniature computer's errors.... My iPhone is my only 'computer' and I try to catch the errors as I write.....obviously can't catch them all.... Forgive me if I 'sound' like an idiot...:(

  • Another smartphone warrior here ;) I hope you find a solution and I agree that this is invaluable and there are wonderful people here! Unfortunately they can literally kill you accidentally sometimes. Thank goodness we know better. .. good luck xx

  • The doctors can kill you, not this forum, lol. That kinda sounded like that!

  • Thanks, super parrot! Good to know you're out there!

    I continue to research all my brain can absorb daily.... Feeling a tremendous need to understand EVERYTHING ... As much as possible .... About the thyroid. I had a P.A. diagnose a 'too high thyroid' in Oct. '14, and by Dec., '14, she was then diagnosing me as 'too low'. She had me in massive states of confusion. Now I'm waiting for an appointment with one Endo who's old-school.... In 2 weeks I have another appointment with a very young Endo. Ought to be interesting.... I just want to get straightened out! I want ME back!

    Stay in touch, eh?! 🙏

  • I gotcha', parrot, about the Dr.'s, not the forum! LOL

  • Ha ha :) I expect I will be posting here paranoialy often

  • LOL!

  • Hello priS-CiLla,

    After research into my hypothyroidism and physchosis, I was shocked to learn of the link between thyroid function, bipolar affective disorder, and lithium.

    I was saddened to hear that your health journey has been such a roller coaster and agree that our illnesses can be lonely and frightening. Thank goodness for informative and supportive forums such as this.

    Education is vital as knowledge is power and enables us to make the informed choices that our doctors seem so incapable of.

    It would be most useful if you wrote your history in your account profile. Click on your name and select profile. That way members can review your history easily if you post any further questions.

    Keep positive,

    flower007

  • Thank you Flower....

    I've got journals am& notes, dates, times, doses, reaction EVERTHING written in several journals so, notebooks, single paper.....just everywhere. With my thinking processes dwindling, I'm at loss as to how to put it all together. Having really hard time making sense of it all. Need help so badly, yet I keeping running up against a brick wall; humongous and imossinle to breech. So wish I could talk with you privately. How do I go about it? I'm lost.

  • ***"impossible to breech"

  • If you click on my name, & then click "send message" you can pm me. However please remember this is a forum where we all help each other & nobody is here to judge so it is better to post openly & receive different advice and perspectives.

    Keep positive Pris-Cilla,

    flower007

  • My very intention, I'm glad we are of one mind. Hope you're doing good xx

  • I would suggest you get to a doctor outside the NHS that will look at you and not the blood tests as they are inaccurate and the treatment far from adequate. You could try Dr Peatfield author of the book The Great Thyroid Scandal and how to survive it and ask him about natural thyroid as in his book.

  • Thanks gismo333, that is a very good idea. Unfortunately I really don't have the money to pay for private treatment, it is unthinkably expensive! I am not planning on taking the doctors word as the gospel truth by any means :) I was hoping to get some blood work and then post it here, and evaluate in terms of my symptoms and all the wonderful alternative information around here and other thyroid websites. I just hope I can hold out for a week while I get all this stuff done!! I hope you're healthier than me xx

  • I will also check out that book. Thanks xx

  • I have reversed my hypothyroid condition through bio energy healing. <website>. Incredible stuff. Look it all up. All people with thyroid condition need help and this is perfect cure in just a few sessions your body will start to heal itself. And restore its original blueprint.

  • Thank you, I will definitely consider that and look it up. I think we have to go for a holistic approach to every condition, but especially thyroid conditions! Xx

  • We have seen many people post about various therapies and approaches that lie outwith conventional medicine. Certainly some people have had positive experiences.

    However, it is unusual to see people who have needed thyroid hormone to end up not needing any. There are known thyroid issues which come and go. Factors such as diet and levels of specific vitamins and other nutrients have profound effects. But few who have been properly diagnosed find that they do not need any additional thyroid hormone.

    And I quote from that very website:

    It is NOT a replacement for conventional medical treatment offered by physicians.

  • Thanks helvella, I certainly wasn't considering it as a replacement, more a complement. It's true that sometimes we can be pushed into drug treatment when it isn't always necessary, but over thyroid disorders I think that doesn't really apply because we're dealing with an already unnatural condition if that makes sense. When I said holistic, I meant inclusive of all factors, not simply choosing an alternative. I'm sorry if it came across as such! Xx

  • I was replying to sara747 - on your thread! :-)

    Was not criticising your response at all.

  • Oh ha ha whoops! Well now you know my opinion anyway ;)

  • Hi - I'm not suggesting anyone stop their medication before knowing they don't need it. Yes I was diagnosed with hypothyroidism last Dec and only just got to see an endo yesterday after considerable time waiting. I received a synacthen test which nearly finished me off - very nasty also as was suffering hypoadrenalism and hypothyroidism. TSH 6 and antibodies over 1000 --- bed ridden i reached out to a healer called <name> who started remote healing me that night. I went from exhausted collapsed in bed to over night energised. I have been feeling gradually better - the body heals itself energetically immediately and then the cells do the necessary repair work. My gut issues have gone down by 80% my swelling in skin has gone down signiicantly - the cortisol levels which were 200 at 9am have gone to 417 in just 3 weeks this is remarkable - the T4 has increased by a few points to 12 and whats most important is I FEEL AMAZING most of the time...a little premenstrual wobble - i have healed on a deeply emotional level too. the endo said they would not offer me drugs as they could see I had made improvments and would monitor me 6 monthly. I am sure that within months my body will be fully restored. This system of healing has healed many many people all over the world of all kinds of illness. Cancer, hypothyroid, Arthritis, Hep C.... you name it. Look up The Domancic Method or a video called Think About it -- healing. On you tube to see how it works. The proof of the pudding is in the eating and so you can't speculate. 4 sessions of half an hour a day have taken me from collapsed - thanks NHS - to vital, alive, happy, back in touch with life, the source, nature, all the slowness of hypothyroid and disconnect gone. Every body heals at a different pace. I had a lot of cell regen to do . But where my throat and stomach used to feel sensitive to touch they don't anymore. I'm not 100% yet but am sure within a few months I will be. Everything takes time. but this system has cured many conditions.

    I suggest anyone with illness try it out. You don't even have to leave your home. Its non invasive. Its v powerful and it works.

  • I'm sorry the administrator removed the name and system. If I cannot put her name I should be able to explain the system its called Bio Energy Healing. I think everyone with AI or endocrine disorders should give this a shot as its able to address the imbalance and inflammation in immune system that Drs are not able to yet... Just trying to help. If you find a good one. The Healing Bio Energy website is available if you google it and you will find many therapists details there or on other websites... its a growing system of health that we should all be open to.

  • OK - I should have read further before commenting.

  • I'm sorry admin, but you cannot say that with authority. I agree with you that suppliments can be helpful in supporting the system especially at the begining of the recovery process. But it is I'm afraid totally possible to reverse and recovery fully from conditions that so far the doctors cannot heal. Stay open minded. Science is just on the fringes of our life force.... Big Pharma sponsor Drs - and Big Pharma make no money from cures!

  • Sara747, Interesting that you feel you've been cured by this. Did you actually have a diagnosis of autoimmune thyroid disease?

  • reply above.

  • Sara 747 can you private message me this website I'd like to look at it. Thanks.

  • Pls pmfji asking. Thx

  • A guideline of this forum, which appears to have wide support, is not to use short-forms and "text-speak".

    One recent thread:

    healthunlocked.com/thyroidu...

    sara747's response above would appear to mean:

    Please pardon me for jumping in asking. Thanks

  • Pardon..?!

  • Well, what did your response above mean?

  • I was in the car. It was a typo. Pls pm me. Is fairly widely known as please private message me. Even outside of text. Apologies if not clear. Happy to share the co text details. Btw I've not taken medication yet as managed to a abolish my condition but I'm also determined to heal from it completely. It's just a case of regulating the immune system and the body repairing cell damage and regenerating. With help our bodies are able to great repair work.

  • Done

  • sara747

    can i have the details for the person please

  • You need to pm me. I'm not allowed unfortunately

  • Done it

  • Hi Sara - I'd like to look at that website but it only says <website> on my computer. No website - could you put it on again please? Cheers

  • I have been diagnosed since 2013 but was obviously ill for some years before. I attributed it all to stress so didn't even ask about thyroid. I gained many stones in weight at one point and can't seem to lose anything. I have the thickening on my legs with a risk if the lower legs get knocked, of ulcers.

    My skin on my legs is very dry and scaley and on my feet too. My hands and arms are getting drier and feel like they have been sandpapered.

    I am on 200mg Levo and TSH optimal.

    I am still not well. Still tired and have terrible trouble walking.

    The brain fog is the one thing that has greatly improved but unfortunately I still feel rubbish.

    Because I was left undiagnosed for 6 years I was in quite a serious way, especially mentally as I couldn't remember stuff and thought my OH was poisoning me.

    My diagnoses is Hypothyroidism from Hashimoto's Disease brought on by stress.

    I hate it. It's horrible but regardless I have come on a long way from where the doctor felt I was close to going into a Myxedema Coma.

  • Oh dear daisy, that sucks :( one thing I have learned over the last few years is one has to be immensely patient with your health. It can take a long time to see improvement! Having said that I have heard a lot of people saying they don't do well on levo, perhaps you need further adrenal support/t3/supplementation?

  • They tested my adrenals and they were more than fine. My T3 also is a good figure. I am very, very overweight which doesn't help and do my best to lose but certainly the thing that truly hinders that more than anything is an ongoing achilles tendon issue which renders me a cripple unable to walk at some times and fine at others. Specialists have monitored it and are now of the conclusion that while my weight doesn't help, it is my thyroid hormones which dictate when I have no pain and when I am in terrible agony. There is mutings of Fybromyalga but nothing confirmed. Sorry I didn't mean to hijack the post, just wanted to explain to the OP that even unmedicated for 6 years and with all the quite serious issues I suffered and still suffer, I STILL hadn't reached Myxedema Coma and it is not something the OP needs to worry about.

  • Oh no worries! I am infact the OP, so thanks because I am indeed reassured! I didn't see it as hijacked at all. I suppose the trouble couldn't be d3 with you could it? The more weight you have the more d you need because it absorbs through your whole body. Also selenium is a biggie I discover. And do you get plenty of fat in your diet? Or have a history of dieting? Loads of people harp on to overweight people that they should eat less low fat low blah etc without considering for a moment that that someone might have a condition that requires just as much nutrition as anybody else! And even if the results are 'normal' it may not be optimum for you for whatever reason. Just a couple thoughts. Xx

  • Yes sorry I realised it was you after I posted. My D3 is good As is my B12. I have to be careful with selenium as my throat swells. I find if I eat more iodine rich foods the swelling doesn't occur. STTM has a page which talks about the fine balance between selenium and iodine and that for Hashi's sufferers it may sometimes be iodine which is required. I eat a pretty natural diet which includes butter not marg and my cholesterol is good. Thus far my all my bloods are good except they now accept I am naturally on the anemia side, actually lower end of normal and have been for years. It's a hard balance. I want to be a bit more normal. Wish I could try NDT just to see if it makes a difference, but that's a luxury we are not afforded in the UK.

  • Nothing to be sorry about! I think there must be a solution somewhere for you but I'm sure I'm not qualified so I will leave it to more knowledgable peeps. Good luck, I really hope you find a satisfactory conclusion. Xx

  • Hi Daizee, I have problems with iron B12 and folate anaemias. The thing that has helped me a lot is supplementing iron via my GP at a good dose. I messed around for years on iron supplements that were just too low.

    I haven't done very well yet, but when I started on ferrous fumerate my temperature stayed at 37 deg for 2 weeks, which was like a miracle as I was in the 35's still. I read you need iron to take T3 to the cells.

    Like you though I still have terribly dry skin, my forearms are like sandpaper too!

  • Daizeefoo

    Even though you say your T3 is o.k. I would still ask the GP/Endo if they would consider adding some to a reduced levothyroxine. i.e. reduce 50mcg of levo for 20mcg of T3 on a 3 months trial basis.

    They put so much emphasis on blood tests (and do you leave 24 hours approx between levo and blood test plus fast) and not sufficient thought on our disabling symptoms. I am going to link to a couple of articles which might be helpful. When I was on levo I developed widespread joint/muscle pain could only shuffle around nor step onto a pavement. I am fine now, no pains or anything and am on T3 only.

    This article is that we are often kept on too low a dose:-

    web.archive.org/web/2010073...

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

    web.archive.org/web/2010032...

  • Thank you for these. I will read a bit later. I take my Levo last thing at night and not the night before a blood test so I am over 24hrs off levo at the time of the blood test.

    I think they are watching my T3. The Endo has tried getting T3 results very early on and for a time the local blood lab refused to test it and even stopped T4 results for a bit. My TSH was 0.1 last test. I am due another set of bloods soon. The only thing I can't seem to suppliments easily is iron as it makes me constipated with upset tummies - hard to explain I know.

  • I have heard quite a few who have had problems with iron tablets. I have read that Spatone is easy on stomach so if you put a new post asking for recommendations you will get a response.

    Your last TSH is fine and some of us only feel better when it is suppressed but the Endos get nervous if it is as they think that there could be problems.

  • Yes I know. To be honest though I felt better than I do now before my last bloods. We shall have to see. Thanks I will post about iron later.

  • Re Spatone Daizee, it just isn't enough iron if you're really anaemic. I get prescribed by my GP Ferrous Fumerate @ 210mg twice a day, so way above the Spatone levels of iron.

    I have a really sensitive stomach, but this iron hasn't constipated me or given me stomach ache. I do take magnesium citrate and a really good dose of Vit C so that helps enormously to make you regular!

  • I was exactly this way when diagnosed. I'd been ill ages and several recent surgeries had gone wrong. I had lumps and swollen lymph nodes. A scan revealed an abnormal thyroid and ordered bloods. My tsh was 96 and free t4 was 0.16 and hashimotos antibodies. I was bed bound and sleeping roughly 20/24 hours. I was immediately started on levo which was weekly raised up to current dose of 175mgs daily. I've also since been diagnosed with RA. I think my health had been bad a long time before this. For 18 months I hardly moved and within six months had doubled in body weight. My endo hardly seems to have interests in thyroid patients and I believe his detrimental views as the only endo locally. I feel no matter how hard my rheumy works to optimally treat me I will always be held back from health till my thyroid gets the same respect x

  • Hi orchidclass77, excuse delay. I can't believe how high your TSH was! Do you think Levo helps? Has your weight stabilised? I'm keen to get my thyroid scanned, but I guess I'll end up paying. The endo for this area is useless, as I live in the sticks there's no choice. I saw him once and he said your symptoms aren't your thyroid which was bonkers. Then grudgingly wrote to me my tpo antibodies were over 600 lol!

    I've had arthritis for 30 years now, it's rotten juggling everything. I think it started through chronic low cortisol. Also I get what you're saying, why don't your different consultants actually speak to each other? I had 11 at one time each dealing with a different part of my body which makes no sense at all! X

  • Hi Superparrot,

    Having been through a serious case of Myxedema, I am pretty sure you are going to be ok. My own experience was feeling extremely ill for a long period of time, tiredness that was so extreme I can not describe it, I was admitted to hospital with symptoms of severe fatigue, severe facial and body swelling, and kidney failure it took a week to get a correct diagnosis of extreme. Hypothyroidism caused Myxedema basically my whole body was shutting down! My blood results were so extreme the docs were amazed I could function at all. I was treated with a very high dose of meds and monitored in hospital for 2 weeks, that was 18mths ago and I'm still suffering now ! I have Hashimotos disease which is a battle day to day. If you have Myxederma you will know about it and you will have been ill for a very long time, it is very rare to get to the levels I did hence I was a bit of a medical nightmare !

    X

  • Oh poor you how unlucky! It is horrible to be the one in a million complication! Thanks for your story. I feel very draggy and tired all the time but I think I would notice if I had kidney failure! I sincerely hope you get better soon and wish you luck with all my heart. Thanks much :) Xx

  • I had had hypothyroidism untreated for 20 years, the fatigue (understatement) I describe as having symptoms like heart failure. I used to have to rest 4 times just to walk up to my GP which was a short distance away. I was also so breathless I couldn't talk and walk at the same time. Then my heart would go so crazy at night I though I was going to die of a heart attack, it was really scary.

  • That was how I felt. If I recall my research showed that you could be considered medically comatose if sleeping 20/24 hours and unable to stand or do much at all. I had quite drastic reactions to upping the levo too with my body often drifting to an unconscious state, I would jolt about, looking on the outside as like having a fit. In my mind I was aware so I knew it wasn't a fit, apparently as the medication was hitting parts if my body that had almost shut down it was almost like jolting those body parts back to life. Horrid to go thru. Every time I moved I thought I would faint or fall to the floor. I was unfortunate that no one ever thought to test my blood for thyroid or anything!

  • That is awful! ! Further confirms doctors do not know what they're talking about. I'm glad you're doing better now xx

  • Thanks Hun and good luck on the beginning of your quest with thyroid problems I hope you get the help you need sooner rather than later. Terrible to be left whilst our bodies literally shutting down x

  • Thank you!

  • Hi Orchidcass77, I wanted to sleep all day, but there were nights I didn't bother going to bed because I couldn't sleep. I'm still a bit like that, my sleep cycle is nowhere near normal yet. I think sleep deprivation no doubt makes my symptoms worse, and health.

    I felt awful on levo too, I just didn't feel I got anywhere with it in the two years I took it, I didn't lose an ounce either!

    I did have many episodes of fainting, when I exerted myself slightly. Washing my hair in the shower made me faint every time for a 12 month period, that's the only real change on T3 I haven't fainted while I've been taking it!

    Are you still struggling with levo?

    I still have problems with standing, not so long ago when I was out I was just looking for places to sit. I'm relieved that's a little better, but with still very painful feet I don't walk that far. This is such a frustrating illness. 4 years in with treatment I can still tick most of the boxes for hypo symptoms. Never got rid of the very dry skin either, I would love to crack that one. My arms are like sandpaper!

  • Yes I am totally like that too. Its now about 2 and half years since diagnosis and I had a bumpy start I think I bounced between hyper and hypo at times. Its utterly exhausting isn't it. My health has generally plunged rapidly downhill ever since I was diagnosed. I very nearly became terminal with concerns that the rheumatoid swelling had damaged my lungs. I live in the UK and it appears in my area there is simply no other options available than levothyroxine :( every time I think I've discovered the way to bring my health back I hit a complete roadblock as soon as I discuss with my endocrine "specialist" I've tried just about every natural/homeopathic/diet/supplement and piece of advice I've ever gotten....and no none has made much difference at all x

  • superparrot

    It is important not to randomly supplement iron & B vits without testing as you won't be able to determine how much is needed.

    T3 should never be taken without a comprehensive thyroid hormone blood test as dosing too much could be very dangerous. Thyroid hormones work in synergy and it might be that you

    actually need an addition of T4 (for instance).

    Also iodine should be avoided until you know more about your thyroid issues as this can stimulate the thyroid gland and In the presence of thyroid antibodies, could cause a hashi attack.

    In a healthy gland too much or too little iodine can cause thyroid problems leading to hypothyroidism or hyperthyroidism.

    You should include good fats in your diet, and also protein at every meal.

    Don't diet now as you won't lose weight until your TSH level is low.

    This is why you need to get thyroid hormones and vitamin levels tested ASAP.

    flower007

  • Don't worry flower, I am not jumping into anything :) I am working on getting tested asap. Thanks for your advice, I will take it xx

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