My legs and arms are very swollen now and i have bowel impaction despite daily sodium picosulphate. 8 lb weight gain in 10 days ! all fluid because my limbs so swollen. My Gp dismisses my symptoms cause he keeps saying my thyroid blood levels are normal. I feel very concerned that I am going to be in an emergency situation very soon with my health and I have no one to fight for me. Very concerned as I have 2 young children 9 and 11 years .back to sleep now ,as cant stay awake. I have an appointment with my gp this Monday at 8.10pm if I can make it and no one to go with me. Feeling very desperate as I know my mental state is also effected so I am not very able to fight for myself I feel I tick the symptoms of myxoedema coma. can anyone help urgently. I live in Bolton. .
in April 2013, Genova diagnostics says my TSH is 3.09 range ( 0.4-4.0) My T4 is 67.8 range (58-154). FT4 13.4 range ( 10-22), Genova diagnostics conclude my reprt by saying Ithat primary hypothyroidism is probable. My Gp has seen this and dismisses it . I have also given him information so he can see the meeting with Scottish parliament about people not getting treatment for thyroid disorders when they need it. I have no -one to fight for me so feel expecially vulnerable because I feel at the stage now where I am too ill to fight for myself. I have a private appointment with a nutritioninst docter on 25th june ( next week) if I carry on deteriorating I will be in a crises situation before that date comes. Please let me know can I have myxoedema coma with thyroid blood levels within range. My symptoms feel it and I have had thyroid symptoms for 7 years and told it is ME. I was a health visitor before becoming ill after the birth of my second child 9 years ago. How do I get my Gp to seriously consider myxoedema coma with my thyroid blood levels being within range.? Any help would be greatly appreciated. I am feeling desperate for help. going to sleep now because cant stay awake.
Kindest Regards,
Bernie Bateman .
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gimi-energy
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You are not in myxoedema coma as you would not be conscious, however I do really think you do have myxoedema (aka hypothyroidism) from the description you give and the blood tests you have provided.
Although your blood tests are within the normal range, your TSH is right near the top of the range and your T4 is rather low in the range. In my opinion you definitely have hypothyroidism/myxoedema and it should be treated. Unfortunately you might have a fight on your hands to find a doctor that will treat.
What time of day did you have your blood tests? If possible, next time you have thyroid tests, get the blood drawn as early in the day as you can. This is when your TSH will be highest and you will be more likely to be outside the normal range.
Don't leave it more than a few months before getting tested again. You may find that your TSH has increased already, which would mean you could get treatment.
It is not uncommon for women to develop and underactive thyroid after having a baby. It's called post-partum thyroiditis. It can clear up but many women remain hypothyroid for the rest of their lives and need thyroxine treatment.
I hope you manage to find a doctor that can treat. If you are in a position to see a private doctor, you can obtain a list from Thyroid UK by filling in this electronic form
Thank you Carolyn for your very helpful reply. My blood test was taken about 10.30 a ish . I will definitely ensure that my next one is taken first thing in the morning as you have advised. I am quite certain that my GP will not allow me to have thyroid blood tests on the NHS because he thinks all my problems are caused by physcological problems rather than my physical problems are causing me huge emotional and physcological problems. and that these symptoms of a medical problem ie hypothyroidism. I will hopefully manage to get through the next 10 days until I have my appointment with a private docter who can prescribe armour thyroid if he feels this is appropriate. I am counting the days and just trying to get through each day. Am having to usel loads of suppositories and occasional phosphate enema to deal with my high up impaction.
Thanks again for your reply . i appreciate it loads. x
Actually you don't have to be comatose to have myxoedema coma! My mistake. It is a terrible misnomer. Anyway, I hope you do finally get the support you need from this private doctor. Hopefully he will prescribe Armour and you will be well on your way to recovery.
If you need any more support or information, don't hesitate to post a question and one of us will reply as soon as we can
Hi Caroline, jst woke up from my 6 hours sleep despite 12 hours last night. yes I have read where it says that myxoedema coma is not when your unconscious but didn't notice your mistake because I am so not quite with it. A good friend has given me some armour 30 mg tablets. I took half yesterday and a full one before breakfast at 11 am !! when I woke up after sleeping 12 hours. I started taking them in desperation because the way I feel is that I don't think I will last the next 11 days before I see my private docter and my GP believes my physciatrists incorrect diagnosis of me that I have a somatism disorder. before I fell asleep 6 hours ago I rang the crises team to ask that he e- mail my CPN to explain that my incorrect diagnosis of somatism disorder is allowing medically trained docters to dismiss my symptoms as being caused by a medical problem and therefore blocking my medical care. I also explained that I am very concerned that I will end up as a medical emergency with myxoedema coma and that my presentation with confusion/physcosis and diagnosis of somatism disorder will mean that my care will be managed by physciatrists rather than medics. I have no one to fight for me which is why I feel more vulnerable that in a crisis situation I have no one to speak up for me and having an incorrect diagnosis of somatism disorder makes me even more vulnerable to nt get the correct medical care I need if a medical crises situation ocours over the next 11 days before I see my private docter. Will ring his team now and leave a message to ask if he is able to prescribe armour if he feels it is appropriate.
I cannot say this forcefully enough - there is NO SUCH THING as ME. I've "had it" for 37 years, so I do have some idea of what I am talking about.
Why do I say that? Because is cannot be and is not a coincidence that the symptoms of ME are the same as thyroid/adrenal/hormone/endocrine problems. When doctors say CFS/ME it is ALWAYS because they can't be bothered to do enough tests to find out what the real problem is. That takes time/money/thought. Doctors can't/won't be bothered to take the time necessary.
We are all different - something doctors and pharmaceutical companies refuse to acknowledge. They like a one-size-fits-all approach to healthcare. For endocrine problems that doesn't work, so we are given the fake diagnosis of ME - an illness for which there is no test and therefore no treatment. Very convenient.
All the symptoms you describe can be thyroid/adrenal related - especially your mental health problems.
Hopefully you will be prescribed NDT. If you aren't, don't despair. There are other products you can take, which don't require a prescription. A telephone consultation with Dr P will set you on the right track if your other appointment doesn't deliver the results you need.
yes having worked for the health service for 20 years and diagnosed with ME I fully agree about your comments on ME. I believe that ME is just a posh way of saying your body does not work properly now go away and get on with it. There can be so many reasons why a persons body doesn't work properly I agree. If the true cause can be found then there is some chance that a treatment can be found to help fix the problem .
I have tried NDT many years ago and my abdomen became swollen after my first tablet so I did not continue.
....sometimes when thyroid medication creates a reaction - it is often connected with the body not being able to cope with something it so needs. If that happens again then stop for a couple of days and then re-try on a lower dose and increase slowly. It does happen quite often to many people - including myself.
You say you are all alone - couldn't the friend that gave you some Armour go with you to see your Private GP - just to give some support and also to remember things you may forget - which can so easily happen !
You are going through a difficult time and it is so tough when you have children. Keep posting knowing that people here will support you and give good advice. Hope all goes well with your doctors appointment......
Myxedema Coma in a Patient with Subclinical Hypothyroidism.
Akhila Mallipedhi, Hamza Vali and Onyebuchi Okosieme
Dept of Endocrinology and Diabetes, Prince Charles Hospital, Merthyr Tydfil.
“To the best of our knowledge this is the first report of myxedema coma in a patient with subclinical hypothyroidism. The reason for normal thyroid hormone levels is unclear but may reflect deviation from a higher pre-morbid set-point. The case highlights the importance of careful clinical evaluation in patients with disparate clinical and laboratory findings.”
Thanks that is so helpful. I have printed the article out and show gp although he will probably just dismiss it completely. it gives me hope that this may apply to me. I have all the symptoms of hypothyroidism although tsh upper end of normal range and t4 on lower end of normal range. I will not stop fighting until I get to have a t least a trial of armour thyroid meds.
Hi B, good luck with it. Go carefully with the NDT, it's got quite a lot of T3 in it, and some reportedly do better taking it with some T4 to reduce the effective proportion of T3. Just 10mcg of T3 daily was initially enough in my own case for the difference to be very obvious.
It's definitely best in my experience to get to a thyroid competent doc - or at least one that is reasonable aware and will take on board patient feedback since if nothing else we need presciptions. I've never got anywhere trying to persuade those dug in on the T4/TSH dogma - and the long delays this and the resulting demoralisation caused plus the worsening hypothyroidism cost me dearly.
Just to add another voice. Not sure what the technical definition of myxedema is, but i had many years of being severly hypothyroid while testing as 'normal'. Normal that is in terms of T4 production, and normal so far as my GP was concerned (multiple symptoms and written briefings were ignored) but my T3 was intermittently a bit low in the range. I was told i was suffering from depression too - 'we all get a bit of it at our age....'
Your thyroid can produce bucket loads of hormone, but my scenario suggests (as has that of many others) that if for some reason (toxicity, genetics, immune/other illness, nutritional deficiencies etc) your body is not able to convert and/or use it at the cellular level that it's possible (and common) to be highly hypothyroid regardless of blood values.
T3 can be the magic ingredient required in this situation, but it doesn't necessarily deliver for everybody as there can be other issues in play as well.
Either way the point the is that despite 'normal' bloods i had quite severe bloating, epecially of my face - and a yellow tinge to to my face which i gather may have been as a result of compromised liver function. Plus most of the usual hypo and auto immune symptoms which were of no interest it seems to the GP.
The proof of the pudding is i guess in the eating. I eventually became seriously ill with clotting in my left renal artery, and in the following work up (which suspected everything except thyroid issues) it was eventually found that i had a greatly enlarged thyroid caused by auto immune disease which included a cancer.
It took a lot of arm wrestling to eventually get some synthetic T3 prescribed with the T4 after the thyroidectomy, but it was the start of a long road (which has involved work on a lot of other issues e.g. dental mercury, nutritional deficiences) to get to what these days fairly normal (fatigue is still to a degree an issue) health.
Thankyou very much for taking the time to send me such a helpful informative e-mail. I am very grateful My energy is approx. 5% compared to prior to getting ill 9 years ago after the birth of my second child.
What were the auto immune symptoms that you had ?
I have my appointment on the 25th with a private docter who also takes into account any other issues eg mercury and nutritional deficiencies. I feel so weak its as if my body is trying to function on one pint of blood !
I have postural hypotension also and was on steroids for 4 years until a repeat synathacin test ( a few months after being taken off the steroids) showed that I did not need the steroids. I am going to ask my consultant endocrinologist if he can do a 24 hour blood pressure recording to show how low my blood pressure gets throughout the day when standing. When I was in hospital last year there were times when my blood pressure was between 75/43 to 85/45. The medics just said it was because I had been on prolonged bed rest ! and my gp says my symptoms are due to the problems in my marriage ! Yes there are marriage problem but wouldnt that be normal when i am unable to do all the normal when i am struggling to function so much and we have 2 young children . So yes I am wasting my time with NHS docters and am ready to start a trial of thyroid meds with the support of the private docter I see on 25 th . Fingers crossed he will be happy with this,
I am so glad you have got health improvements. Hearing stories like yours inspires me and others no doubt to never give up when your GP says there is nothing wrong with you because your blood results are normal and then as in my case is now blaming all my symptoms on the problems in my marriage. Hopefully one day soon I will start to improve with thyroid meds and show the NHS docters how wrong they were for the last 9 years.
Thanks again for taking the time for sharing your inspiring health journey. I am so please you have at last got improved health.
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