I did a post earlier called "Follow on from my sisters results" Well the devastating upshot was tonight, she had a major seizure and is now in intensive care. The Consultant thinks it may have been caused by her thyroid condition, we won't know until all the new blood results have come back. When I updated him with what had been going on and the lack of concern by the GP, he just raised his eyebrows. He said that his first reaction when he saw her was "Thyroid and that she was so cold" - Jenny also has Down Syndrome. Her ferritin levels and B12 levels are considered normal by the GP, but if you read my previous post, they are not in my opinion. She is also on the "Dementia pathway"
As a family we have thyroid conditions, B12 deficiency, pernicious anaemia and dementia. So the fact that my poor Jen has gone through this, is unbearable. I just pray she pulls through. But because her heart stopped for 27 minutes, there is likely to be long term damage going forward. Why oh why are GP's so cavalier with our conditions? I am absolutely heartbroken.
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JOLLYDOLLY
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I am terribly sorry to hear about Jenny and about how you have been treated by the Medical profession. This disease is dreadful and not made any easier to bear with lack of support. I have always felt like a burden to my GP and on seeing a consultant more recently who did actually see outside the box I was beginning to have hope. However, although he believed he also had his hands tied behind his back when it came to offering help. This postcode lottery is a stumbling block. I managed to get through it with persistence and I would recommend that when Jenny pulls through this crisis you and her contact a good Consultant, one that sees outside the box as it were. If you would like the name of the Consultant I see then I would be happy to share details via private message. I pray for Jenny, and for you as her sister. X
JOLLYDOLLY sending love and a big (((hug))) to you, Jenny, and your family. I can only imagine what you're going through. Take good care of yourself too in this stressful time xxx
Too many doctors out there who are clueless to thyroid problems, but pretend to be so knowledgeable, and now poor Jenny is the result of one of these GPs. Where are the dedicated doctors who are totally committed to the Hippocratic Oath? You are indeed blessed if you have one!
So many hearts and prayers go out to you dear Jenny. We hope you make a complete and speedy recovery.
I'm so sorry to hear about your sister. My 7yr old grandson has a syndrome which is being tested as Prader Willi Syndrome. He has all the traits and now has started talking about killing people and death so I guess there are some psychotic tendencies too but help just isn't out there. The world is moving too fast to notice the vulnerable which includes their families.
I should be giving you hope but I can only say 'deal with the moment for now' and try to keep yourself healthy as you will need your strength.
I hope they'll be able to help now she's in good hands! xx
Really sorry to hear of your awful NHS experience - we all know that its hard enough for ourselves to be a sufferer at the hands of the medical profession - but when your children are involved???? there are probably no words that will be sufficient for your current situation. I do hope things get righted soonest.-
Sending love and hugs JOLLYDOLLY to you, Jen and all your family. Flamming gp needs stringing up. They make me sick how they play with our lives with such disregard. I do hope you get your Jen back 🙏🙏 xx
My thoughts are with you and your family ,hope she's ok. This makes me so angry the sad thing is the GPS haven't really got a clue about the thyroid everyone with a thyroid problem should be under an endo even then there is guarantee but most GPS are clueless I know in my surgery they are .
I'm so sorry that Jenny has been so badly let down by the system. I am thinking of her and you and your wider family and sending all positive thoughts for a recovery. Please let us know what happens and please look after yourself - never easy when a loved one is in intensive care but it's vital to stay well yourself. Accept any help offered and share the load - so you are all strong when Jenny leaves hospital. All the best.
So sorry you're all going through such tough times. My heart goes out to you and your family and I hope she can now get what she needs xx
So sorry to hear such heart aching and sad news. Hoping and wishing things turn for the better. I can only imagine the pain you and family are going through. Stay strong 🙏.
I'm sorry to read about your sister. I hope she makes a speedy recovery. I read your last post and I just wanted to say, you sound like a wonderful supportive sister. Jenny is very lucky to have you ♥️♥️♥️
So sorry to hear of this. Hoping and praying that she is able to recover from this awful experience. Stay strong and look after yourself too she will need your continued support. Please don't neglect yourself whilst going through this awful time. Prayers are with you and your family. xxx
I'm so sorry to read this. You are a wonderful sister. I'm certain Jenny feels your strength, love and support. I hope she gets the care she desperately needs to heal her body and mind.
Your sister's experience is just dreadful. I'm so sorry she and your family are going through this.
Do you have access to any news outlets? Her story could serve as a 'wake up call' for her GP and others like him who do not take thyroid conditions seriously. Only through education can change occur.
They say there is power in prayer and many have answered your call, JOLLYDOLLY. I'm not sure what or whom I pray to but you have my entreaties too, my hand over yours across the ether and a reminder to also look after you, so that you might help look after Jenny xx
More doctors are using T3 as therapy for hypothyroidism in those with Downs Syndrome. Downs and hypothyroidism are related. Your sister needs the active thyroid hormone T3. What she does not need is T4. The most common problem is not being able to convert T4 into T3. Therefore, T3 gets blocked from being used by the body. This leaves your sister without adequate active thyroid hormone (T3).
"The real driving force behind the conversion of T4 to active T3 versus reverse T3 is based on D2 and D3 enzyme activity. The physiological process that either up-regulate D3, producing more reverse T3, or down-regulate D2, producing less active T3 are:
Low iron
High or low cortisol
Inflammation
Oxidative stress
Low active T3 production can be a vicious cycle, especially when genes for T3 receptors are inhibited. As well, hypothyroidism leads to a further decrease in iron absorption, increased inflammation and oxidative stress as well as stress on the body that leads to high or low cortisol levels.
All of these processes that contribute to elevated rT3 levels and/or reduced T3 receptors on cell membranes are experienced by children and adults with Down syndrome. Many, if not all, of the symptoms of Down syndrome mirror those of congenital hypothyroidism, including low muscle tone, delayed development, delayed tooth eruption, dry skin, pulmonary hypertension, delayed cognition, poor circulation, constipation, reflux, low body temperature, tongue protrusion, umbilical hernia, slow growth and many others."
There are many hyperlinks at the article above that will illustrate to the doctor the correlations of hypothyroidism and Downs Syndrome and exactly what to do about it. Pull up the article and print it in its entirety. Give it to the doctor along with the URL.
Be calm and firm when talking with her doctors. You have every right to try whatever it takes to heal your sister. A reasonable doctor will be willing to investigate this as well as figuring out that the levels considered as "normal" for certain vitamins and minerals are not adequate for your sister's care.
T3 is a sore subject in the UK because of the price. I need to talk to her Dr's about the results as today they were still giving her the original dose and other tests.
Just so you understand, T3 is a sore subject within conventional medicine -- meaning it doesn't matter where you live. It is the same here in the U.S. Why? Because conventional medicine doesn't teach about the basic need of vitamin, minerals, and hormones and how the endocrine system cannot function properly without those nutrients being adequate and in balance.
Also, the testing in place for proper diagnoses of such problems is inadequate. Such tests often make it appear that T3 is adequate when in actuality T3 is not reaching the cellular level at all. The patient seems fine when looking at blood work, but in reality the patient is overtly hypothyroid.
That's because TSH is being used as an indicator of thyroid function. It is useless for such.
But even conventional doctors can be taught if the right information from a good source makes its way to them.
Conventional doctors are taught that Levothyroxine (T4) is the end-all cure for hypothyroidism. In truth, Levothyroxine is fine as long as the body is healthy enough on all fronts to accept it and convert it into the active thyroid hormone T3 which every single cell in the body cannot live without. That conversion needs nutrients in order to carry out the task.
Without adequate T3 comes a domino effect of increasing symptoms, syndromes, and organ failures (the gallbladder is usually the first to indicate low thyroid function as it slows down to a crawl and creates gallstones). There are those physicians smart enough to initiate thyroid hormone at that point and have found the gallstones diminished following administering thyroid hormone. Other ignorant doctors immediately think the gallbladder is diseased and must be removed.
Such is the way conventional medicine operates. It ignores what the body needs in order to function properly. It turns it back on good nutrition and the simple mechanics of proper functioning of the entire body. All functioning of the body is dependent on thyroid hormone.
The bottom line is that adequate active thyroid hormone (T3) must be allowed to reach the cellular level of the body. This is why T3 that has been depleted in the body's cells and tissues must be replenished or the systems of the body begins to fail.
The body will respond to T3 and continue to improve as optimal levels serve to rejuvenate every cell in the body.
Even Dementia and Alzheimer's have been associated with Hypothyroidism. Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, etc. -- you name it and there is probably a root cause associated with a lack of T3 in the body that is feeding those maladies.
Please read the following article. This is the information most conventional doctors need to be made aware of. It includes references which doctors will recognize and take notice of, even if they don't want to be taught by integrative medicine. Please print it out in its entirety and present it to the doctors who are in charge of your sister's care:
(Excerpt) Conclusion (from the National Academy of Hypothyroidism):
" The most important determinant of thyroid activity is the intra-cellular level of T3, and the most important determinant of the intracellular T3 level is the activity of the cellular thyroid transporters (1-67). Reduced thyroid transport into the cell is seen with a wide range of common conditions, including insulin resistance, diabetes, depression, bipolar disorder, hyperlipidemia (high cholesterol and triglycerides), chronic fatigue syndrome, fibromyalgia, neurodegenerative diseases (Alzheimer’s, Parkinson’s and multiple sclerosis), migraines, stress, anxiety, chronic dieting and aging (1-43,46,49,51,52,53,58,60,66,68,69,72-118).
This high incidence of reduced cellular thyroid transport seen with these conditions makes standard thyroid tests a poor indicator of cellular thyroid levels in the presence of such conditions. The pituitary has different transporters than every other tissue in the body; the thyroid transporters in the body are very energy dependent and affected by numerous conditions while the pituitary is minimally affected. Because the pituitary remains unaffected, there is no elevation in TSH despite wide-spread tissue hypothyroidism, making the TSH an inaccurate marker for tissue T3 levels under the numerous conditions listed above (1,3,4,17,22,43,50,52,55,59,60,61).
The reduced thyroid transport seen with these conditions results in an artificial elevation in serum thyroid levels (especially T4), making this a poor marker for tissue thyroid levels as well (5,40,41,49,52,53,62,66,67). An elevated or high-normal reverse T3 is shown to currently be the best marker for reduced transport of thyroid hormones and an indication that a person has low cellular thyroid levels despite the fact that standard thyroid tests such as TSH, free T4, and free T3 are normal (6,32,41,45,62,66,67,125-172) (see Diagnosis of low thyroid due to stress & illness Graph).
The intracellular T3 deficiency seen with these conditions often results in a vicious cycle of worsening symptoms that usually goes untreated because standard thyroid tests look normal. Additionally, it is not surprising that T4 preparations are generally ineffective in the presence of such conditions, while T3 replacement is shown to be beneficial, with potentially dramatic results (71,74,75,76,80,81,82,86,97,98,99,100,101,102,103,104,105,173-198). In the presence of such conditions, it should be understood that significant intracellular hypothyroidism may exist that remains undiagnosed by standard blood tests (the freeT3/reverse T3 ratio may aid in the diagnosis). Thus, more appropriated testing beyond standard thyroid function tests should be considered and supplementation with T3 should be considered with such patients."
Hopefully, this will give the doctors a reason to look into T3 Therapy for your sister.
Oh, JOLLYDOLLY, this is a terribly frightful situation. Many years ago there was a woman on an investigative show on TV who had a Downs Syndrome baby who attempted to cure her baby with sort of combo of fats and she did make strides. The idea is that these children do not absorb certain fats which the brain MUST have. It's been so long ago and I don't know if it became the basis for some sort of treatment but we do know that brain need fats, fatty acids, etc. avocados and coconut oil would be very good for her no matter what the cause of the seizures. Heartfelt hopes for her recovery.
I am so angry when something like this happens to someone who cannot help themselves when it comes to their health. My son is also learning disabled and I have to fight for any supplements he has to take even though I am buying them. I wish Jenny well and thank goodness she has a sister like you to care for her welfare. Perhaps Mencap would like to know about this. It is bad that NHS do not care adequately for our weakest of society. (((Hugs))) to you both.
Praying for Jenny. God bless her. How many others of us will be sidelined by doctors who dismiss our symptoms. Action needs to be taken by those that can. Keep your pecker up JollyDolly x
Oh my goodness JOLLYDOLLY So sorry to have missed this post earlier.
I'm so sorry to hear this, and after your post yesterday about how her GP seems to be letting her down this really does show how poorly she has been treated.
You are both in my thoughts, and Jen's twin too, and I'm sending healing vibes to Jen and hope there is at least a flicker of good news soon.
At the moment, she is being sedated. She is having little seizures and they do not know if it is epilepsy or that her poor little brain took the bashing for the lack of oxygen. She is due to have a special scan on Monday. Also, she remains completely unresponsive to anything including touch and light. I have yet to have out her results of the blood tests but they were still giving her the original dose of levothyroxine today in liquid form.
Needless to say, my heart is breaking as they have prepared us for the possible outcome xx
I can only echo all that has been said here JOLLYDOLLY.Stay strong and know that we are all thinking of your sister and hoping that there will soon be better news for you and your family and she will be on the way to recovery.
My thoughts go out to you and your family and very positive thoughts are sent to your sister. Take good care of yourself. This negligence from so called medical professionals is an absolute disgrace....
Thank you all for your kind words. At the moment my heart is breaking. She remains unresponsive to anything. They are keeping her sedated as she is having little seizures and they are not sure what is causing them. Her heart stopped for 27 minutes. I will keep you posted when I know more. Jen is due to have a special scan on Monday, I can't remember what they call it but it is neurological.
I am so terribly sorry to hear and yes oh course prayers heading your way.
I've had similar problems with GP's and specialists and so has my sister. She was on the verge of giving up her dreams because of their ignorant and arrogant attitudes. So I told her to keep searching until she found one who treated her seriously and also with empathy and respect. Please keep searching on your sister's behalf because there are good medic's out there and don't take No' for an answer.
I don't agree with the ideology that Dr's are only human and make mistakes. To me, there is NO room for error in that profession. Not when a person's health, wellbeing, life is at stake 😠 Sure some might be uncertain and that's okay ... that's when they should be double-checking with colleagues.
My prayer's are with your lovely sister and also your family.
So sorry to read this sad update on your sisters journey. Let's hope she receives the best of care from now on. My thoughts are with you and your family. Xx
Despite years of reading some dreadful reports here, I am truly shocked at this. As are so many others.
She is so very lucky to have you as her sister.
As an admin, I often delay responding on threads where there is a huge outpouring already under way but I have been following the thread since it started. Every supportive response will be appreciated. Don't stop just because there are already many responses.
Thank you helvella, I am overwhelmed by the response the family have had. On FB alone we have had over 500 messages and prayers from around the world. It brings comfort to know that Jenny Wren is so loved <3 So with the support here to, it is absolutely incredible. Thanks to everyone here <3 x
So So sorry to hear this . It is sad that we have to police the Doctors that we place our very lives with. This should not be this way at all AND they should be held accountable -I have done this with a record problem by going to Patient Relations Department , if anything it could prevent this happening to another. My thoughts and prayers go out to your Jen and all of yours.
I pressed the like button not because I like what happened to your sister but like the many others who did likewise, I wanted to demonstrate my support.
It is bad enough for more able bodied people with thyroid disease to fight for their rights but it is outrageous that Jenny, one of societies vulnerable people , someone who needs extra care and attention, has been treated so badly.
Please give Jenny a kiss and hug from us and tell her that my family and no doubt many other families related to this forum, hold her in our thoughts and prayers. Whatever the outcome, please know that you and your family are not alone.
Thank you all for the love and support here, it has been overwhelming but so appreciated.
We have been told today that our Jenny Wren has gone as we know her and that the Jenny Wren we see, is not coming home. Our little piece of "Twinkle" and the bestest sister in the world is not with us anymore. Absolutely and completely heartbroken. The reason for the seizure, is not because of her thyroid condition (thankfully) it is to do with something else. We will know more tomorrow hopefully, if not Tuesday when they get the report back from the scan.
I did ask about the results, but the T3 and T4 results have not come back yet. Everything else was ok!! So I have to believe what I am now being told. I am too devastated to say or think about anything else for obvious reasons.
Oh JOLLYDOLLY so sorry to hear your sad news. You and your family must be devastated. I hope you get some answers soon. Thinking of you all at this really difficult time. Love and hugs to you and your family. xxx
I hope that you find what little comfort there is in this sad situation, knowing that your Jenny hasn't a clue how devastated you're feeling. Later you will remember her as she was and the manner of her leaving will fade. Know that she took her memories of you as the wonderful loving sister you clearly are and didn't get to see you perturbed by her condition.
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Help for my sister please?
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