Hasn't the time come for the overlooked and at risk thyroid community to shout loudest for appropriate treatment.
Hyperthyroid holidaymaker dies in Bali due to C... - Thyroid UK
Hyperthyroid holidaymaker dies in Bali due to Coronavirus
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sy28
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The person in question had diabetes, hypertension, hyperthyroidism and and lung disease. Wasn’t just hyperthyroidism.
There doesn’t seem to be a lot of evidence that people with thyroid conditions are being more adversely affected than others.
And even if there was, then people with cancer, diabetes, COPD—I could go on—surely have just as much right to shout loudly?
Dear Jazzw, all of those conditions can be associated with Thyroid disease
Well yes, but correlation does not equal causation. And that wasn’t what your original post said—you said thyroid patients should shout loudest.
I don’t think we have any more right than anyone else with a chronic condition.
With respect, with NHS access to T3 denied for optimal health, perhaps I wouldn't suggest shouting.
I’m sorry, what do you mean? I’m genuinely confused. The subject line of your original post referenced Coronavirus and the body of your post seemed to imply that people with thyroid disorders should shout loudly so as to be protected from infection.
If that isn’t what you meant, then your post had a very misleading title.
And the NHS doesn’t always deny T3. It’s a postcode lottery, sure, but my husband was prescribed it for years. I’m not saying that thyroid patients are particular well-served mind. The medical profession’s obsession with TSH drives me insane...
In being driven mad by a sudden policy that only urgent requests will be tested only t4allowed. So far they rejected the endocrinologist and because I had chest pain it appears they rejected the request from a&e. I definitely feel shortchanged it was even suggested it was anxiety. Heard of adrenal gland malfunction? If the endo and casualty are denied just who do they think they are. We are not getting an equitable service a
Dear Jazzw, forgive me, my thoughts relate to the many Thyroid patients reporting lack of appropriate treatment and care - T3 trials denied, being told the NHS cannot help them solely due to cost - those who have gone on to develop additional, avoidable, secondary chronic conditions, including respiratory, cardiac, high blood pressure, diabetes and who are now at further risk and vulnerable during a viral pandemic.
RedAppleAdministrator
sy28, Can you provide a link to this info please so that people can read the full story?
SeasideSusieRemembering
I think it's more likely the lung disease that was the problem rather than hyperthyroidism. Lung disease puts one in the at risk group.
The Chair of Bali’s COVID-19 task force, Dewa Made Indra, announced the death late on Wednesday, saying the woman had other underlying medical conditions, including diabetes, hypertension and lung disease.
Dear Seaside Susie, I know hypothyroidism can affect/weaken lung muscles, is it the same with hyperthyroidism? Personally, I seem to have developed asthma prior to discovering Hashimoto's diagnosis
is it the same with hyperthyroidism?
I have no idea.
I know that my lung disease is not connected to hypothyroidism. A very common cause of mine (bronchiectasis) is due to childhood illness that we kids in the 50s and 60s used to get. Our mothers used to ensure that we got measles, whooping cough, etc, from other children to "get it out of the way". Also pneumonia or bronchitis as a child is another cause.
Totally agree we should be shouting out loud for appropriate treatment sy28.
Totally agree we should be shouting out loud for appropriate treatment sy28.
Treatment for what?
If you contract the virus I'm sure you will get appropriate treatment.
I meant appropriate treatment for Hypothyroidism, not the virus 😏
I thought that was what sy meant in a roundabout way?
I agree smilingjane. That's exactly what I was referring to.
T3
Dear Seaside Susie, to clarify I was referring to inequalities of care in regard to Thyroid disease, which puts patients at risk.
For thyroid diseases.
Are you doing so?
Have you contacted, for example, the BTF to explain why you believe their covid-19 statement is inadequate?
Have you contacted the MHRA on dozens of occasions to get issues resolved?
The only reasons I ever say anything about doing such things here are
a) To let people know about a response;
b) To encourage others to make their feelings known.
I don't say it in general because there is nothing to be gained from so doing.
I agree that people should be making contact as approrpiate.
Latest response from BTF:
Thank you for your email. There is understandably a lot of concern among our members and we are monitoring the situation very closely.
Having spoken with leading UK endocrinologists, who have been keeping an eye on the situation, their view is there is no current evidence to suggest people with thyroid conditions are more at risk or more likely to develop severe symptoms. We state to that effect on our website.
Some people with thyroid conditions will be living with other health conditions, such as diabetes, heart disease and asthma so we felt it would be helpful to include this information.
Should there by any new evidence to emerge that is relevant to people with thyroid conditions, we will update our website accordingly.
I am being misunderstood here 😐
I am concerned, like a lot of people on this site about the unfairness of Thyroid treatment in the UK. Eg the T4/T3 issue.
I am not relating my response to the c. virus.
Only my most recent email was about corona virus.
I am agreeing people need to shout.
But on occasions where I have tried to encourage others to do their bit of shouting, I have rarely seen any evidence of others doing their bit. Of course, they might have shouted and not let us know. And certainly some have shouted! 
Even talking to non thyroid sufferers about the inadequate dosing etc. is raising awareness.
That's about all I can do currently.
However I am so greatfull to those that do a lot more. 😊
Let me know who to about to and I will. This is making my life impossible and short of going private I'm stuck. NHS England got involved over the poor service for brain injury ( shunted out of city offhand) my husband was one. Everything is a fight but this is against nice and affects a huge patient population.
A short time ago, I complained to the MHRA that a Patient Information Leaflet was unclear. They agreed and have passed on my comments to the licence holder to be considered. Hopefully, they will make the very small change (more or less typography rather than information) next time it is updated for any other reason.
Many levothyroxine PILs say the medicine should be taken before breakfast - with no justification. We should be requesting MHRA get them updated to accept bed-time or other dosing regimes are feasible.
Many here are still stuck with 28-day prescribing - and this is a bone of contention. I struggle with the justification for people, like me, on a long-term stable dose and with no other medicines required. Need to complain to local prescribing bodies, ask every time at your GP surgery, etc.
Always send in a Yellow Card report if you have a problem with a medicine.
Keep reading! I have often said that there is something which needs people to get involved with.
Levo increases blood sugar and may lead to diabetes. But cannot see how hypos shouting loud will help in the current situation.
Dear Helvella, thank you for your previous replies, 'shouting' can be interpreted as raising Thyroid awareness, which hopefully this dialogue is doing. I try and do my bit by signing petitions, completing surveys and reporting prescribing inequalities. To date, this has included feeding back to MHRA, NHS England, local CCG, PALS, Thyroid UK, Thyroid Trust, The Guardian. Inequality of care and prescribing appear to be a real burden for large numbers of thyroid patients and that should not be the case.
that is justifiable activity and I merely meant that it is no good seeking special attention in the context of this awful virus.
in reply to Treepie
I agree, this is the worst not the best time to seek attention. I agree people should be treated with what suits them best, but now, all doctors are mobilised, work 24/7, are busy rescuing patients on ICUs so I don't think is the right moment at all. But yes to t3 for all who need it.
Also, I thought this post was originally about coronavirus as the subject suggests. Let's not behave like The Sun or Daily Mail and post such subjects on a forum where people try to find answers and in some cases, comfort. This is not the right moment now. And as I see, this woman had numerous conditions including lung problems. If you have hyperthyroidism, but no lung issues, no asthma, no cardiac issues that can cause shortness of breath - you are not at risk. If you do, be careful, stay home, ask someone to get your groceries. My parents are locked in right now, no visits, no shopping.
Good luck with that but until the NHS changes it's blood test ranges for thyroid function and stops using the only the TSH as a guide anything we do will be ignored. I got my local MP to ask Matt Hancock about the treatment of thyroid patients and the use of NDT and you can see the answer I got on my profile page.
WOW all this apply to me !!!
I’ve shortness of breath, heart disease, and hypertension with my thyroid?
I’d best say goodbye now.
Best try to keep clear of everyone as much as practicable for the time being. I did this last year whilst being given chemotherapy and for months after .Now doing same again. Worse of it is that I cancelled three holidays last year and was looking forward to going away but have cancelled again.
I have had “thyroid problems “ for 25 yrs but have never been one to catch colds , virus etc. I am at the moment on immune suppressants which is worrying but other than that I Don’t think I’m a special case. I think your post is a bit ott to be fair and nothing to do with your comments after. We know our care is far from the best , most of us fight for good care every time we go to gp but it has nothing to do with the Coronavirus
If replying to me.... I have never had bad treatment from my GP. I’m really happy the the service I receive and thankful
No not you. The original poster. Glad your happy with your treatment
Great to hear, you're so fortunate
Well good for you. But this is not the case for many, many others. Far too many are left to seek the attention of Secondary care providers and pay the most astronomical amount of money for Life saving meds.
....and how is that my fault ?
I’m just pointing out that having paid all my dues into the system for 40 years. I’m fortunate to receive a good service.
That may change further down the line as it’s only 2 years since my illness struck out. But what ever help I receive, I’ll still be happy.
I’m well aware how fortunate I am after reading so cases and the simplified and sheer dreadful treatment from some in here but I wasn’t aware that only people whose miss diagnosed or ill treat are only allowed to post.
Here’s hoping the great help in here will stop or at least help others to get the sort of help I’m currently receiving.
Hello DeeD123, my experience might differ slightly from yours, in that 'thyroid problems' were unreported to me from between 2000 -2017 (that's as far back patient records allow me to go) - elevated TSH test results being the repeat culprit. Accompanying symptoms during that period included testing positive for H-pylori, experiencing a frozen shoulder, developing asthma, hypertension, anxiety, depression, panic attacks, unexplained fatigue, low vitamins. I now know these varying symptoms coincided with above-range TSH, yet over the years GPs failed to make the connection. Fast forward and I received autoimmune Hashimoto's diagnosis in 2018, coupled with suspected poor T4-T3 conversion due to a genetic cause. Sadly my experience of NHS primary and secondary care reflects lack of empathy, continuing failure in making connections, with prescribing access denied due to cost. Preventative measures are never discussed. When I read the youngest UK patient, a mother of 4 in her early fifties, had sadly passed away in Bali of Coronavirus, contributory chronic conditions being hyperthyroidism, diabetes, hypertension, lung disease, I thought of her family, their collective personal journey and desperately hoped her UK thyroid care had been optimal, as best as it could possibly be. That's the 'shout' and I agree, it should apply in equal part to all chronic disease patients whose NHS treatment plan has stalled due to cost, leaving them physically vulnerable and isolated. Thank you for replying and I take on board your comments.
My treatment over the years has been to say the least incompetent and in the main negligence so I can indeed relate to what your saying, it still has no bearing on you opening post though. My thoughts as well as those of all of us goes to all families who have and will lose loved ones to this newest virus . Take precautions and I hope you stay as well as you can
I am of the understanding that a side effect of carbimazole can reduce the white cell count and therefore can make a person neutropenic and at risk of sepsis from bacterial or viral infections. Be vigilant!
I simply cannot believe such a serious condition has been so very neglected. Like a great many others it has effected my life and caused additional blood disorders. The terrible news regarding the lady in Bali to die, from Novel Coronavirus, and that she suffered from Hyperthyroidism, simply serves to highlight that the Government needs to be absolutely specific about how it sets out its public health information, regarding at risk groups. Hyperthyroidism or Hyperthyroidism both cause immune deficiency , due to both being Autoimmune diseases.
in reply to delahay
This person had several serious conditions, hyperthyroidism being amongst them. If you read reports and a recent study, you'll see that it's the patients with lung and cardiac issues, cancer patients that may suffer the most. Let's not spread more panic and disinformation. Autoimmune thyroid diseases are specifically overactive immune systems, attacking their own gland, that doesn't mean everybody is weak, has a low white cell count. I have antibodies for thyroid nearing a thousand, but white cells are perfect. I have Hashimotos, but at this moment in time a serious health condition to me is a person in ICU fighting for its life. And not because they had any thyroid disease (unless it's a thyroid storm of myxedema coma). Please take care and use appropriate measures to avoid the virus, but let's not spread disinformation and cause panic.
Billyboy2u in reply to
I’ve put myself in quarantine Lol. Seriously I’m in the highest group that appears to be going to die if I catch it. Even though I think I’ve a good immune system I’m not willing to take the risk.
in reply to Billyboy2u
Absolutely, the risk is not worth taking! One of us leaves the house if we really need to go to the shop and it's a very quick trip. My dad is in the highest group too, they also stay home, I can't even go home to see them, but it's a good thing, it's better to isolate. Take care billyboy2u, you're doing your best! There is a story of a man with diabetes, he recovered. Another story of his friend with cardiac issues, who was hospitalised, also recovered. Stay positive x
Your not going to like this .....
Why is it always someone else’s fault. You seem knowledgeable about your auto immune system. Would you go on holiday knowing what may happen to you at such an infectious time ?
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