I've been blue lighted 3x to A&E in 10 days with Myxedema Crisis. Not believed & refused IV T3 or any treatment. Reason given you can't have Myxedema Coma as how do you come round without treatment? I don't have a clue but I know loss of consciousness is common in severe Myxedema Coma (saw it in my mum & sister). Anyone know the answer please?
I have suffered very severe nerve damage to both feet, legs, hands and arms!
I'm so very sorry to hear this is still happening to you. Can anyone from your family intervene urgently on your behalf, perhaps by contacting PALS, or a senior clinician or senior manager at the hospital? The urgency of the complaint would have to be made very clear and any phone or face-to face discussions recorded.
If no-one at the hospital will address your emergency needs in a timely fashion, perhaps even consider making an approach for help from your local MP's office? It's hard to know what to advise for the best. You may even need legal advice at this point. You should be able to find a local solicitor who has experience of NHS matters. Usually, the first 30 minutes of advice is free, and will be long enough for them to form an idea of your problem and a possible short-term approach to it.
I've had the experience of losing consciousness and coming round spontaneously when diagnosed but untreated or undertreated, so I've some idea of how ill you have to be to reach this stage. Most doctors have no experience or knowledge of myxoedema coma.
Thank you! I was in Shrewsbury Hospital where they no longer keep T3 in stock & Endo Consultant told me even if they had it he wouldn't give to me as a visitor.
Sorry you've experienced this loss of consciousness too, my are getting longer & more severe. I have no blood results even though requested them on numerous occasions.
Reading previous posts you have DiO2 gene variation. Is that homozygous or heterozygous?
Negative TPO antibodies. But you also need TG antibodies tested
Many hashimoto’s patients only have high TG antibodies
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
20% of Hashimoto's patients never have raised antibodies
healthunlocked.com/thyroidu...
Low vitamin levels are extremely common when hypothyroid
Important to see exactly what has been tested and equally important what hasn’t been tested yet
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You will need to get full Thyroid testing privately as NHS refuses to test TG antibodies as your TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
Thank you! I've had loads of bloods, CT scans, x-rays, ECGs & of course show nothing wrong. Yes DIO2 mutation unsure what exactly, I have very complex medical needs & a heavily suppressed immune system which can interfere with some results I believe. Received loads of paperwork from Shrewsbury but no blood results, although requested. I have kidney transplant yet they totally ignored that & Endo had no idea when I eventually saw him. Completely washed his hands of my care & reiterated that no NHS doctor will help me! I'm hopefully being referred to private endocrinologist. Wasted money already on 'private' NHS Endocrinologist.
As a kidney transplant patient, you are particularly vulnerable. Often, we find that other medical specialisms are more receptive to the idea of treatment with T3 than are so-called thyroid specialists. They seem better able to appreciate its global physiological effects.
Could you ask your nephrologist for help? He or she may be willing to advocate for you, and will probably be much more concerned about your general health than some random A&E medic (or endo).
Thank you and yes Nephrologist is aware & referred me to Endo immediately however recent events have been reported to them.
Just called Transplant Clinic in Brighton not interested!!! What the hell is going on in the NHS? My kidney transplant is priceless to me and clearly worthless to them. Give up 😢
I'm so sorry. Time to make a formal complaint and/or seek legal advice. xx
newhealthadvisor.org describes the problems with rejection of a kidney transplant
which can occur up to months later as chronic rejection. You should have a transplant team co ordinator for changes in immunosuppression.
Symptoms with excess weight, and other symptoms sound similar. The fact you were called away suddenly may have influenced your thought, as you have been cut off from contact from the Brighton team. Even if the symptoms occurred several weeks after the transplant and you were told everything was ok, errors are made in the NHS. I would not like to have to be sick under the care of the specialist who treated you. Hope you will discuss the transplant as part of your worries, as if the endo is passing the buck to your department in Brighton, you are caught between two
areas and have been let down. No need to reply.
Thank you, had emergency TX clinic appt, no rejection at all, damage from blood starvation due to Myxedema Crisis
No treatment yet? Glad you had the appointment. No need to reply.
You are legally entitled to copies of all your blood test results and ranges
However if tests are done at hospitals they are often difficult to get
Any thousands of UK patients forced to get full private testing in order to make progress
Come back with new post once you get results
Thank you, I requested them again today and they will be sent to GP, refused to send to me. My bloods do not show hypothyroidism as genetic disorder hence why I have become so ill, everyone goes br TSH
That’s why it’s important to do full Thyroid and vitamin testing privately
You need TSH, FT3, Ft4, both Thyroid antibodies, plus vitamin D, folate, ferritin and B12
I shall definitely do this, thank you
Have you tried zinc supplements with vitamin C? B12 injections with folates
might help neuropathy damage to the extremities. Hope appointment went well.
Zinc helped my hubby after a virus where he could not taste for 18 months. Someone suggested taking vitamin c and zinc supplements and within two weeks of taking them he recovered his taste! Shaws has put out a post concerning B12 deficiency. with a video concerning deficiency =a salutary lesson.
Could you discuss your problems with the nephrologist? Is your TSH extremely high? If not, then your episodes may stem from something other than thyroid. It's not necessarily the same problem as your relatives because so many things can cause seizures or loss of consciousness. Your nephrologist could refer you to the relevant department to investigate. Endocrinology is unlikely to be the right department. Loss of consciousness may be totally unrelated to any kind of thyroid hormone issue. You need to keep an open mind and gather evidence from investigations.
Thank you Myxedema Coma, or Crisis as now referred, has been diagnosed by Endo, started on T3 and T4 9 days ago, not enough to stop crisis. I have undergone every test and all my symptoms scream hypothyroidism. DIO2 gene mutation does not show in routine bloods hence why I've been left untreated for six years. Nephrologist not interested & Endo not interested in my kidney transplant, no-one wants the T3 costs associated, Endo at Shrewsbury said exactly that.
If a similar episode occurs again, ask your family to plead for admission to a different hospital, if that is at all possible in your area.
I have been blue lighted to two different hospitals and same response which was absolutely zero. The 'ban' on T3 has influenced every decision except the low dose 20mg daily T3 prescribed by the Endo at first hospital who refused the IV T3 treatment, so within 48 hours I fell into crisis again
With hypothyroidism, you cannot go by symptoms to diagnose it. You need the tests that Slowdragon has advised. Hypothyroid symptoms can be very similar to many other conditions. It sounds like your health is complex so it might take time and patience to unravel.
With certain genetic issues and types of Hypothyroidism it is necessary to go by signs and symptoms, not by blood test results which can be misleading. NICE guidance recognises this as it gives clinicians the opportunity to try other options based on signs and symptoms even if blood work looks OK.
NICE Guidelines for diagnosis of hypothyroidism.
nice.org.uk/guidance/ng145/...
Not sure what 'other things' you mean, sorry.
I am familiar with the guidance.
Sorry no time to go through it at the moment to find examples, but if you don't feel well despite a TSH in range, your dr can do further tests.
If you have Central Hypothyroidism, your TSH won't necessarily rise as for Primary Hypothyroidism. This can mislead doctors.
If you have DIO2 gene, your T3 results can be meaningless because the blood can look good, but because of conversion problems, there is insufficient T3 in the cells.
Thank you
Hallmark of central hypothyroidism this link says low FT4 but best to read.
quote from healthline,com 6 7 2017 article title Myxedema Coma Symptoms Pictures Treatments and More
myxrdema crisis occurs when your body can no longer tolerate the changes caused by severe hypthyoidism si it decompensates, this is a life threatening condition. quote from myxedema coma a new look into an old crisis
ncbi.nim.nih.gov
"Studies have shown that replacement of thyroid hormone through ryles tube with a loading dose and maintenance therapy is as efficacious as intravenous therapy."
In many countries T3 is not used and is not thought necessary, but needs an endocrinologist to prescribe it. A coma is not the same as a crisis but the crisis is serious. As there are not many cases known about then you are dependant on expert help at your local hospital. Steroids may be used, as well as
thyroid hormones, but the danger of organ failure due to sepsis, is akin to that of
diabetes. The tests for iron ferritin vitamin D B12 and folates are essential as if there is iron deficiency, a low vitamin d will alter the iron and ferritin levels and leave you more prone to sepsis. Iron is carried in the blood by oxygen, so drinking water can help oxygen levels. foods to be avoided are raw brassica vegetables cabbage and other greens which accelerate an enzyme which accelerates hydrolysis of glucosinolates. These are sulphur containing vegetables -brussel sprouts- kale - choy - cabbage -cauliflower- rutabaga- collard greens- mustard greens and horseradish. Avoid unless cooked, Keeping warm is important, and may be exercise with an electronic foot massager or a pedal cycle you can use in your arm chair to increase circulation in your legs. As you have a family history of this condition, this is not being noticed by your health care team. If you can get a print out of blood tests to see if you are iron and vitamin deficient this may highlight your need for prescription supplements. If you have anaemia then you are more susceptible to other infections and your heart is affected. I would ask for heart and ecg tests from your nurse, to find out if your heart is being affected by your thyroid and adrenal function. be persistent. Just tell them if you have difficulty with breathing or exercise to check heat function with a 24 hournwrist device A diabetes check is advisable too.
Thank you, my appt for Monday has been changed to telephone call due to Coronavirus and my being immunosuppressed. I am saturated in fluid retention, put 30kg on since transplant, prior on fluid restriction as dialysis patient. Everyone acknowledges the fluid yet dismisses it
Preventing water retention after a transplant is a medical problem as it may be due to factors to do with swelling near to the transplant op site. It might be helped by diuretics, and by a low salt diet from dietitian. You could ask what the cause of the swelling is. The fluid can be removed and other patients may have this done, which helps their well being. It is so difficult for you to ask but do you have a health visitor who can come to the home?
Kidney function was phenomenal before last two Myxedema Crisis episodes. Water retention nothing to do with transplant, my sodium levels were dangerously low so put on Na tablets 3, 3x daily - a huge dose. My hypothyroidism started in 2014 due to the stress and trauma my body went through due to ultiple gross NHS negligence. I have rare diseases and therefore I don't receive vital treatment, don't fit into the blinkered neat tick box the NHS has become. I press for treatment & bullied, vilified and told I need psychiatric help! Told this be Endo in Shrewsbury, I explained my doctorate is in Psychology
Then as you have not had clear input from your team, the effects of the fluid retention may have nothing to do with the transplant, but its presence can affect your health and especially your heart and lungs.
We have exactly the same attitude in our area, but wanting to know the effects of so much excess fluid and having it removed, cannot be waved away by mentioning the corona virus. It is part of the after care after the transplant whether or not the oedema stems from your thyroid or from
another reason. If you can liase with your health visitor, or district nurse to find out how you can be made more comfortable with your extra weight which is due to fluid retention. To have no support at home with the management of your health, with dialysis and fluid retention must be
depressing and make you angry.
gosh.nhs.uk/.../drainage-or aspiration-fluid-radiology
Lipoedema- NHS = nhs.uk/condtions/lipoedema
healthyhearty.com/fluid-ret...
My daughter has gained a lot of weight with hypothyroid but
she has not watched her diet. Everyone is different so if you have weighed yourself recently and can work out how much time it has taken to gain this weight, it might be useful. Fluid retention in women can be due to ovarian cysts and problems, so suppose an ultra scan might help of stomach and abdomen. You have the right to know. Hope you can ask the right person to find the treatment you need - it may not be the endo.
Thank you and I do have fluid in lungs and around heart, well documented and still ignored. Professor Chris Farmer at lead Nephrologist at East Kent and Canterbury told me it was all in my head and he refused to discuss it any further and instructed no-one should as they are fed up wasting their time discussing me!
As you live in Kent you have the right to another opinion from the Kent and Sussex hospital. This may be an endocrine problem to do with gynaecology. It is the route of referral you can find out about. My daughter had suspected kidney stones, and has gynaecology conditions which are being treated by gynaecology. I cannot imagine a specialist taking this line with any patient. You have to have another referral route as you have had a personality clash and this has upset you. This is the best hospital for diagnosis and treatment but if you can ask for an ultrasound and a referral to another specialist it might help.
Been under a Gynaecologist and everything fine, referred back to Renal. No-one listening or caring, so ill currently, exhausted, warn out from battling NHS for treatment x
Well you have some more asking to do. I would ask about heart and lung function
as all that fluid must be making you worse. You should ask to see a cardiologist as you are so tired you can't walk. You can make an appointment with a nurse rather than a doctor, if your surgery is open, and ask about your breathing and swelling.
Then ask if you can have the fluid drained. They usually do this in the surgery with an experienced person who knows how to take the fluid off. A relative had lungs aspirated in her eighties. She lived on for several years into her nineties. She lived in Kent. If you have an early appointment there may be only a few people in the surgery.
It is truly shocking that a nephrologist should ignore fluid retention in a transplant patient. Do you know what his reasons were for doing so?
Yes, until these three recent horrendous Myxedema Crisis episodes my kidney eGFR was 90 and all my bloods kidney related excellent
I cannot believe the lack of support for the patient.
Cannot open either link 😕
Sorry its my server..its hopeless.
Where we live, we can contact an out of hours service to a district nurse who you can contact or ask for help with the 120 pounds of excess fluid. There should be specialist services at your clinic to remove the fluid every few weeks. This will make you feel so much better.
The title should be Patients rather than pictures..apologies typing error.
Another member who comes from your area has the option to have treatment at Birmingham which is a specialist teaching hospital. You could ask for a second opinion at Birmingham as the condition runs in your family. I apologise for typing errors as I have poor sight.
That is so kind of you and we were only in the Shrewsbury area to empty MIL's house as she had she move to a care home, I live in East Sussex, wasn't expecting further episodes. I got permission to travel from Endo and hindsight is a wonderful thing
Look at the Brighton and Hove CCG Formulary. It ALLOWS prescribing of Liothyronine for Myxoedema Coma!!
gp.brightonandhoveccg.nhs.u...
I suggest you contact Healthwatch East Sussex as a matter of urgency, or consider advising your Endo that you are considering making a complaint to the GMC! This is serious!
If you have faulty DIO2, especially if it is homozygous (i.e. passed on by both parents) Levothyroxine is not effectively converted to T3 and that is what you need in the cells. Your blood tests results can only be used as a guide, they can be misleading and your signs and symptoms give a better idea of how Hypothyroid you are.
Too much Levo may be creating rT3.
You need some help from the medical profession, otherwise they will harm you.
Good luck 🤞
Thank you! They have harmed me already, very severe nerve damage as MC damages the Central Nervous System, legs, feet, hands and arms damaged. They believe MC doesn't exist and it's one coma & fatality follows without intervention. Not true, smaller crisis episodes happen which should be warning signs however constantly ignored & I've been left with no medical care. I doubled my 20mg daily T3 myself as I know I required IV T3. I had two crisis in 48 hours still ignored & discharged told it's not MC and no T3 in Shrewsbury Hospital (not my home).
I shall check out the link x
Will you be able to go home, or are you stuck until your MIL is settled in the home? This must be so stressful for you ,when you cannot get the help you need. My dad was treated in the Kent and Sussex new hospital. It has very good diagnostics. It is the best hospital in the the UK. Hope you are able to get an ambulance ride home, and can get the right help in your area. No need to reply.
It is a life-threatening condition requiring urgent intervention. You need assurances that, should you face this situation again, that you will be treated appropriately. In addition to contacting Healthwatch, also get in touch with PALS and Lorraine Williams of The Thyroid Trust. You may need urgent support from a Thyroid Support group. I am scared for you and don't want you to become a statistic. I apologise if that sounds alarmist, but sometimes we don't do enough to fight for our needs to be met.
My husband and I have fought for years to be prescribed thyroid meds & begged for IV T4/T3 and not one person cared. We are warn out from having to constantly battle for life saving care.
I am so sorry to hear this @Rosedaisy. I hope you get some support from the organisations I have mentioned.
Can you buy Natural Dessicated Thyroid as your T3 is not converting. There might be a private consultant who will prescribe T3 but NHS patients will not be given it as it is the new theory that T4 is all that is required.? Many other folk use this and find it helps.
My husband went into myxedema crisis after heart surgery last month, he was on IV T3 for a week, intubated, tracheostomy, renal filtration and all the rest but still died on Monday.
My condolences @bantam12.I am so sorry to hear of your loss.
Oh my goodness, I am so very sorry to hear this and please accept my deepest condolences
Thanks
Reading the weblinks, it sounds like the gene affects response to thyroid hormone treatment, in particular poor response to LT4. How does the gene relate to initial diagnosis for someone with normal thyroid hormone levels? Is it possible for someone to have 'hidden' hypothyroidism due to the gene even if they have normal thyroid results and are not on thyroid hormone?
I think that seems very possible.
If we knew what our levels were when healthy and (reasonably) young, we'd probably have a much better idea. We could compare current levels with our personal historic levels. (I believe that in healthy people, these are pretty stable over many, many years.)
In that case, everyone with normal thyroid results, Including no thyroid antibodies, who have hypothyroid-like symptoms will need DIO2 testing in future to rule out hypothyroidism as a possible cause of their symptoms. Best to gather the evidence. Is the NHS testing this now do you know?
No! Not interested I have to pay and go privately, the Endo in Shrewsbury Hospital told us that
OK, that's what I thought. Personally, in terms finding what's causing symptoms, if it were me I wouldn't go down that route either because it doesn't sound like your symptoms are typically hypothyroid symptoms and you're not taking thyroid hormone. It sounds like the gene test is more useful for people already diagnosed with a thyroid condition but who are not responding to thyroid hormone. Just going on what I've read. I think your nephrologist is your best bet.
It is most definitely hypothyroidism, nothing at all to do with kidney transplant
In that case, if your thyroid tests are normal, I guess you'll have to fund the DIO2 test to get the evidence. Your profile says you've got the DIO2 gene but above you've said you haven't had the test done?
It is in the family and I have already paid for private genetic testing, waiting for results. An Endocrinologist strongly believes I have inherited this gene mutation and is arranging genetic tests for me
Good, then you should soon have the evidence. 'Strongly believes' is not the same as evidence and you do need the evidence.
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