My mother passed away from Myxedema Coma, my sister fell into a Myxedema Coma & thankfully saved as lived in France & they immediately recognised hypothyroidism even though TSH normal. The NHS ignore my history & my TSH normal although I have exact symptoms down to putting on 30kg of fluid. My body is saturated with fluid, every cell, I'm so bloated it caused a bladder prolapse. I am a kidney transplant patient so this is extremely dangerous for me. My son paid for me to see a private endocrinologist who was useless, never heard of DIO2 & relied purely on routine bloods & then wrote to my GP stating do not give me thyroid meds. Four yrs of fighting & I know my time is running out. Thank you
Please can someone explain rogue DIO2 gene & My... - Thyroid UK
Please can someone explain rogue DIO2 gene & Myxedema Coma to me please?
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57 Replies
•
Hi Rosedaisy,
I know nothing about myxedema coma or how you should proceed medically .
I just want to say how difficult this must be for you and so frightening and I hope someone here can offer some information on the DI02 gene which will help you.
Would it be possible to get information via the French doctors who treated your sister?
I can tell you that it is known in medical circles on the Continent that the NHS treats thyroid/hormone issues very poorly indeed.
I hope you get help and treatment which will improve your health very soon.
Finola
• in reply toFinola
Thank you so much Finola, sadly my sister is no longer here and we have no access to her medical notes. I really appreciate your support, and the frustration is enormous x
I am so sorry about your Mum and sister and I wish you all the best with your own health challenges x
I saw a useless private Endo too, who wrote to my GP getting me taken off HRT. He didnt know about Selenium! I have also seen a marvellous NHS Endo. Therefore Ive found that really do need recommendations otherwise youre wasting your money, time and health.
Have you tested for the D102 gene?
• in reply toMichelleHarris
Thank you Michelle, I have just paid for a private genetic test as the NHS refuse to do one as my thyroid blood tests are 'normal'.
It's an absolute nightmare and truly is pot luck with which Endocrinologist you see x
You can get a list of doctors and endos with more of a clue from TUK. It will probably need to be an endo who understands central hypothyroidism as well as primary if you have low thyroid hormones and normal TSH. DIO2 gene problem means that you have trouble converting T4 to T3. Do you results for TSH, FT4, FT3, TPO and TG antibodies, folate, B12, ferritin and vit D? You need those before considering a private appt
• in reply toAngel_of_the_North
Thank you I am a member of TUK who are trying to look into sourcing advice for me. I also went to the Phoenix Clinic in Harley Street for bloods - as per an offer in association with TUK.
I am prescribed Strong Vit B Complex & Thiamine also take Vit D daily.
I have ordered an Ancestry DNA test as TUK advise it includes DIO1 and DIO2 genes, the NHS refuse to help as TSH reads 'normal'. For nearly four years I've fought for help and T3, warn out by it all x
Do you have blood tests privately, or past blood tests that you can share? Be as knowledgeable as you can and just treat yourself.
• in reply toNWA6
Thank you x
Do you have full thyroid blood tests, including Free T3?
The DIO2 gene is involved in the conversion of T4 to T3, which is the active hormone. If there is a conversion issue the Free T4 will be good but the Free T3 will be low.
• in reply toHughH
Thank you Hugh & yes I do. NHS Endo & Private Endo had never heard of DIO2. After speaking with another member I shall be seen by Professor Wass as soon as it can be arranged.
HughH• in reply to
It would be good if you could post your thyroid blood test results.
Given your family history it appears that you have a genetic condition but there are other possibilities as well as DIO2.
Myxedema coma is the end result from having severe hypothyroidism. If your TSH is normal (do you have the actual number value?) you'll find it very difficult to get thyroid hormone therapy unless you can get Free T4 / Free T3 tests to show that you are producing very little thyroid hormone. Most doctors have been advised that as long as the TSH is normal, so are the hormone levels. This myth has been soldered into their cerebral cortexes.
Myxedema is fairly easy to spot by a doctor who still retains some competency with low thyroid symptoms.
You've had a kidney transplant...how are your kidney function tests? Normal? Low kidney function can cause fluid retention. Unfortunately, low thyroid function can cause low kidney function.
There is a phrase that doctors tend to listen to...if you use this phrase, there is a better chance of you getting some form of treatment.
"Let's rule it out"
If you ask your doctor to "rule out" hypothyroidism by giving you thyroid hormone, then he'll be more likely to do it, just to prove that he's right and you're wrong.
Because the TSH normal range is so huge, he has room to explore. Giving you 50mcg of T4 won't make you hyperthyroid. I'm sure that when they looked at your TSH results, it was on the high side of normal (~5.0).
Consider asking this question if he still says no:
"What are you afraid will happen if you gave me thyroid medication?"
"Are you afraid you'll lose your medical license?"
It's all about the negotiation. When you have hypothyroidism, you have to get really good at negotiating and understanding that their decision-making is not about you (your health); it's about them (their liability).
• in reply tokiefer
Thank you, it's a genetic condition & my mother died from it, my sister fell into a coma & was saved with T3. All bloods read normal as due to DIO2 gene therefore does not show in routine bloods. I have begged for thyroid meds from GP & transplant clinic & they refuse. My kidney is fantastic, nothing to do with the fluid retention. Without T3 I shall die so I've ordered some from abroad & shall self medicate, it's my only option. I know time is running out for me, it's history repeating itself.
You need to be given T3 immediately, I believe. You are in danger.
Endos have become so wary now that they might get into trouble by prescribing T3 although they can do if they think it necessary.
The fact that your family members have died due to Myxedema coma should have alerted whoever is treating you that you need T3 now - this instant.
I'm glad you're sourcing your own T3 but I think you should publish your experience in the daily Newspapers. How many in the UK are suffering unnecessarily due to stupid rules, seemed to be conived by males for the majority of females who're suffering due to the guidelines and no options other than levo.
What would happen if there was no internet to 'open eyes' of the desperate need for humane/knowledgeable doctors. Those who don't stick to the rules would most probably lose their licence.
Update! Fell into acute hypothyroidism coma rushed to A&E received IV T3 and T4 plus Na. Stayed in a couple of days on T3 , T4 and Na pills and back in clinic tomorrow for further tests looking as genetics. Still no confirmed reason however treatment started which I have fought for for years. Thank you so much for your support and advice x
Marz• in reply to
So sorry to read your post - do hope you will soon be feeling better, Does your treatment include T3 ? Are you in France or the UK ?
• in reply toMarz
Thank you and yes T3 twice daily. I am in the UK and it has been extremely stressful, demoralising, frustrating and dangerous trying to receive a diagnosis.
Marz• in reply to
So pleased you are receiving T3. So they do know about T3 saving lives then - so their refusal to help us must be planned obsolescence !! - I am T3 only and have to buy abroad,
• in reply toMarz
It really is shocking they have stopped prescribing T3, I was so lucky on my second A&E visit the Consultant in charge was the top Endocrinology Consultant and had no hesitation in prescribing T3, he also told me I shall remain under his care rather than GP to ensure I receive T3 regularly. It's been one hell of a battle getting here however I made it whereas my darling mother didn't. Being hereditary I had to get answers to save my children and grandchildren too x
Marz• in reply to
From reading here - even some of the Top Endo's have issues with T3 due to Guidelines and fear. You were deservedly blessed to meet the right man .
Thank goodness you've found a sympathetic doctor who will look after you. That was a nightmare you've experienced.
• in reply toshaws
Thank you, I am so grateful and we expected a fight as usual to be believed and thankfully he went by symptoms not bloods. Such a relief and it should never be this hard
I think the professionals should go back to clinical symptoms in preference to a blood test result.
scorp1o• in reply to
I am so glad that you saw the right person, albeit by chance, and that he has the sense to take over your treatment. I'm T3 only yoo. May I ask which part of the country you're in? Sorry if I've missed this. Every good wish to you.
• in reply toscorp1o
Thank you, it was very scary I remember watching it happen to my mum and sister a few times. My husband was amazing as he had witnessed it previously too, it is horrendous that in 2020 patients are still falling into Myxedema Coma. I am in East Sussex
scorp1o• in reply to
You take care.
Your fight to obtain a life-saving treatment is truly appalling but unfortunately not unusual in the UK! They really don’t want to know, always waiting to the lad minute when the situation gets so bad it can’t be ignored. You were lucky in this instance but many people die prematurely as did your mum. Had your sister not been treated by French doctors she would have died sooner too. It’s an absolute disgrace!
So pleased you are finally receiving the treatment you need.
Would you mind telling me what were your symptoms before you went into A &E? Did you fall asleep nearly all day long? Did you feel dizzy and have a buzzing head?
If you wouldn’t mind telling me I would so appreciate it.
I have had a battle for years to be put on combination T4/T3... have started very slowly in November. Have noticed some small improvements but still no energy and feeling unable to function. Am concerned about the possibility of falling into a coma. Would like to understand better. The endo dismissed that but prescribed the T3 on the NHS... so not sure I can really trust his judgment.
You have been through incredible times, physically and emotionally. So very pleased you’re getting the treatment you need.
Very best wishes for a complete recovery.
• in reply toJGBH
Thank you and I utterly agree it is disgraceful the way we are dismissed, ignored, told it's all in our heads etc etc.
I had identical symptoms to the ones you described, lost two thirds of my hair, my outer eyebrows, majority of eye lashes, gained 30kg, looked 9 months pregnant constantly, cold to the core, very low temperature around 34.1 to 34.6, very high bp even whilst on bp meds, chronic insomnia, cracked teeth literally I ate a raspberry and a small pip cracked my whole tooth & I've always had really good, strong teeth, aching joints especially hips, knees, ankles, toes clawed, nails brittle, couldn't eat stomach so squashed by bloating would be sick or terrible heartburn, went from a size 8 to size 16, had to walk with stick as balance terrible & knees would give out, severe breathlessness, very low sodium, horrendous tinnitus, hearing loss, declining vision, constipation, dizzy, moody, yellow palms, yellow skin, beyond exhausted and no doubt loads more.
I did notice whenever I ate I would feel exhausted afterwards and even more bloated, truly miserable. On the night I slipped into the coma (my mother and sister both had several) I had just eaten some homemade soup and did my usual of sitting on the sofa with legs up. David, hubby, cleared up and put dishes into dishwasher so ten minutes max came back to find me totally unresponsive he knew exactly what was wrong.
My sister was only on T3 having been given a combination to start and not really feeling much better. She thrived on T3 and was back to her old self.
I hope this helps and actually typing out my symptoms the fact the were ignored by so many and I was spoken to in a disgusting manner on numerous occasions.
Good luck! x
• in reply to
** missed out makes me so angry!!!
JGBH• in reply to
Hi Rosedaisy,
Many thanks for giving me the list of symptoms which actually are what I have and am experiencing. The tinnitus and constant buzzing in head are horrendous as well as losing my balance (yet did tai chi for years but not possible now for past 2 years), problems will eyes , the incredible need to sleep nearly all day - that’s quite concerning- told gp, saying this can’t be normal and even that I though my brain was not getting enough oxygen.... she agreed but NO suggestion of what could be done. I used to feel frozen to the core but that has improved since I have been injecting B12.
My temperature is rather low, rarely up to 37oC often low 36 and even 35! I feel like I am about to faint often (2 years ago I actually fainted out of the blue, while walking or sitting at the table eating or sitting on the sofa watching tv or on my laptop. Yet GP did nothing!)
My hair was falling a lot and faint eyebrows short at the ends, that has improved since I started the combination therapy. Feeling so weak no energy at all. I can’t even do little gardening, cannot do housework... cooking is difficult at times and feeling exhausted after eating as you described.
Plus more. So am now more concerned that I could end up in a coma and no one to call an ambulance.
The NHS endo I saw told me I would not have this happening to me! How can he be so sure? But he did prescribed the combination therapy I requested: it’s only a 3 month trial seeing him in March for review so hope he will carry on prescribing...
So many thanks again for your reply.
If he doesn't keep prescribing, you might have to resort to self medicating like I had to do and other people on this site. Read my story and see what a struggle I had to get treatment. I now regret not doing something sooner but I felt too ill to even have a shower or get out of bed at one point.
Thank you. Yes many days I spend in pyjamas too weak to shower and when I take a shower I need to rest lying down afterwards! Feeling out of breath too most of the time.
Are you feeling better now? What improvements did you notice first and how long did it take?
Best wishes.
• in reply toLora7again
Thank you I had ordered some however they hadn't yet arrived, so good I have a stock now. I felt the same couldn't leave home or look after myself. It's a truly misunderstood or maybe rather ignored potentially fatal disorder
I feel so sorry for you when you say there's no one to ring an ambulance😥 How much T3 are you taking? Maybe you need more and it would be better to have a supply of T3 at home? It's diabolical how we're treated with this horrible disease, having to hope against hope that we can be prescribed optimal meds.
I think this is what must've happened to me many years ago when I was on holiday. My med notes are 'missing' so I never really found out. I felt so ill and collapsed on the beach. I came round ages later wrapped in a foil blanket [on the hottest day of the year] and the kind paramedic said he'd given me an injection and I had to tell my Dr that my thyroid meds had to be changed ASAP as they weren't working. I was taking 250mcg of Levo at the time. GP said she didn't know what he was talking about, that there was nothing else, and paramedics didn't know anything about the thyroid!😕 Much to my regret, I believed her and got progressively worse. I hope someone listens to you and you soon feel better.
It’s difficult when one lives alone..., many people do nowadays. My family live a long way away and are stressed out in demanding careers.
I take 75 mcg Levothyroxine (reduces from 100 mcg) and 20 mcg in mornings then have just increased T3 to 20 mcg in evenings, so 40 mcg T4 per day. I started low dose (5mcg) and slowly increased as was getting palpitations. So have a few weeks before I see the endo again in March. Hope he will carry on prescribing. I believe it takes longer than 3 months to make a difference.
I also live alone now, for the first time ever, as my youngest daughter went to uni in September, although there always seems to be someone here! I quite like it when it's just me and the animals, it's a novelty, but it's ok for me, as I'm no longer as ill as I was, and so don't have your awful worries, but I don't know what I would've done without my daughters helping me when I was on Levo. If you're in any doubt, and feel really bad, you should phone the emergency services to get checked over. Don't worry about it being a false alarm.
As soon as you mention palpitations, the Dr's seem to go into panic mode and withdraw or reduce the meds. I only really had heart problems when on Levo, [I literally thought I was dying, and had so many investigations...all negative] although I do occasionally get a hard heartbeat after a meal, or strenuous exercise, but never any chest pain now.
Before T3, I would fall asleep with my face in the food after a few mouthfuls, or fall asleep suddenly whilst holding a hot drink. I had a ridiculous amount of accidents. On one occasion I nearly drowned in the bath, as I couldn't sit myself up from lying back... I hadn't got the strength, and was suddenly overcome with extreme and debilitating fatigue. The plug chain came off, so I couldn't drain the bath with my foot, and I was sinking. The weight of the water on my chest was restricting my breathing even more, which was terrible in those days, as I could only take very shallow breaths. It was a nightmare...I was still there, freezing, when my girls came home. That was the last bath I took when no one was at home for a long time. I caused my poor family such a lot of stress.
I really hope your prescription is continued and I agree, it does seem like a short time for a trial, some people would take much longer to respond for a variety of reasons. I wasn't even allowed a trial, but they would never have let me try the high dose of T3 I've ended up on anyway, so I would have probably thought it hadn't worked! They seem to make it so hard for you to get well, but I'm sure you'll make it one way or another...patience seems to be the name of the game🐢 x
What a frightening experience it must have been for you when stuck in the bath! How dangerous. Can’t get into the bath anymore because I have Rheumatoid arthritis and am in much pain most of the time, so it’s the walk-in shower when I have enough energy and in not too much pain.
What dose of T3 are you on?
The GP surgeries are businesses, it’s all about GPs making money, not the patients ‘ welfare.
It’s easier living alone when one is younger and/or in fairly good health...
How are you feeling now?
Take care.
Yes it was horrible and I've never forgotten it. It made me very wary of suddenly becoming debilitated, and I lost all trust in my body. I had thought a nice magnesium bath would soothe my aches and pains!😕I'm reasonably well now, with only the odd bad day, fatigue, etc., [usually when I've overdone it] and I have a few left over problems which I imagine are a result of being left on inappropriate meds with deficiencies for so long. I also have to keep a fairly rigid Vit/mineral regime and take large doses of B12. I may try self injecting B12 at some point, but I use Jarrows 5,000 sublingual and lots of B vits and it seems fine as long as I don't forget to take them. I also use the Better You mouth sprays and other supplements. I have thyroid hormone resistance and I take 150mcg of T3 daily. In the heat of the summer I find I can reduce to 125mcg. It's effects have been miraculous over the last 3 years, but I wish I'd started it a long time ago. My experiences have left me totally disillusioned and distrustful of Drs...I have no faith in them x
• in reply toJGBH
It must be very frightening for you and I hope the fact you are trialling meds for three months you will see an improvement and can stay on them. I recognised everything you say, it is very debilitating. Hope you'll feel stronger soon xx
JGBH• in reply to
Indeed it’s frightening. Because of this situation i have developed anxiety. Whenever my family stays with me or I with them the anxiety just goes away simply because I know there’s someone around should I faint. It’s amazing what difference it makes having the reassurance of having someone close by.
I haven’t seen a great improvement yet but my hair doesn’t fall as much as it did, my eyebrows can be seen and very rarely I feel a little, very little, boost of energy in the morning when I get up. Doesn’t last long but perhaps this is a sign of improvement. Will fight tooth and nails to keep the T3. Three months is simply not enough to make a considerable difference.
• in reply toJGBH
Little steps to recovery it sounds and playing around with meds for correct levels for you. Good luck and very sorry to hear about your anxiety, it must be very difficult for you. Have you consider a pendant alarm eg lifeline or Appello? My mother lived alone and relied on one, it was an incredibly difficult time as I was gravely ill myself so couldn't help out x
JGBH• in reply to
Thanks again for replying and good suggestions. x
I am so sorry to hear about what has happened to you and your family. When you feel well enough please complain so no one else goes through this.
Here is a link to complain and tell your story.
nhs.uk/using-the-nhs/about-...
• in reply toLora7again
I shall along with complaining about the Private Endocrinologist I saw four weeks ago who ignored all my symptoms even though I look as someone with hypothyroidism and wrote to my GP stating this patient does not require T3 or T4 as does not have thyroid problems!
JGBH• in reply to
Yes it’s important to complain. The doctors get away with mistakes too easily. You could have lost your life prematurely. Keep us posted but more importantly keep on improving.
I am so sorry you had to go through such traumatic experiences. I really hope you never have a myxoedema coma again, that must have been really scary. Hugs from Canada 💛
• in reply toSeahorse76
Thank you, it was very scary and as I was coming out of it I could hear my name being called and told to open my eyes. I tried to open my eyes and say something yet I simply couldn't, I felt trapped in my body unable to respond and thankfully I came round and back to being compos mentis.
Molioli• in reply to
I am very new to this site and just familiarizing myself with it and with the members stories, comparing them to mine. I am very sorry to hear about your experiences and hope that now, you have found a good endo, you are on the way to recovery.
You mention in one of your posts that you were going to see a certain Professor, I assume in Oxford. I am asking because I did see him last February and although I was subject to a hefty sum worth of blood tests, my hypothyroidism symptoms were acknowledged I did not receive diagnosis. He totally ignored some alarming results and the fact how they influence control of my Type 1 Diabetes, I was told there was nothing wrong and my GP received a letter (without the blood results) saying that I should be monitored but not what should be monitored.
You also mentioned in a latter post that you complained about a privet endo, is this who you mean? I am considering complaining but lack energy and motivation and would be assured if I wasn't the only one that had this patronizing treatment.
Best wishes
Molioli
So scary! This should not be allowed to happen.
I'm very sorry to hear it Rosedaisy x I'm glad that someone finally is looking after you by prescribing you t3.
I would sue all the doctors that told you you had no hypothyroidism
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