Very interesting Tweet from Chris Kamara about his thyroid struggles (couldn't find it on the forum so thought it may be of interest).
I found it very comforting to read about someone familiar going through similar thyroid issues. It really helped me justify my own struggles knowing that someone as admirable as Kammy was going through the same. Hundreds of lovely comments too.
Glad it helped... but worth considering the many similar stories of struggle and courage on here from people who have little support and suffer away from media highlight.
Your struggles and those of all with thyroid conditions are just as real as someone famous...you should not feel you have to justify your struggle to feel well.
The important message comes in his wise advice to let people know that you are feeling unwell and his words, "...don't be a mug like me"
For years I also paid the price of being that "mug", until I learned to take control....don't be afraid to make your health a priority.
Take care.
The problem is that everyone on the forum is anonymous so that's pretty difficult to relate to. I'm a huge advocate of this forum and the wonderful people in it, but I know nothing about them beyond their symptoms.
I'm not a celeb watcher, but I think it's really important to have people relatable in the public eye that people can look up to. Unfortunately the reality is many of us do have to justify our struggle every day, but if you can say to your friends "look I'm going through the same issues as that person" then they can understand that, it's powerful. If you try and show them a post from a stranger on a forum they're much less likely to be sympathetic.
I don't think having someone admirable in the public eye belittles anyone's journey here, quite the opposite. Just thought it might help people.
It wasn't a criticism, just an observation. I certainly didn't think you were "belittling" the journeys of members here. I'm very sorry if you felt that I was and of course you are correct...it might help some people.
I did refer to "his wise advice" and I wish him well.
No apology needed, you had some great points, sorry if I didn't phrase it well!
Rant alert!!
Hypothyroidism is an emotive subject for those of us who travel the long, hard, bumpy and often lonely road in search of recovery.
I have been lucky to have a very supportive husband and sons and that has been all I needed.....they have shared decades of my failing thyroid health and associated problems. I have accepted that it's difficult for others to understand and realise they often have problems of their own....maybe, at 76, I'm just old and look at things differently!
After much research it now seems that my problem is congenital. The "little white pill" ( levothyroxine) I was told many years ago would make me well again never did...my health continued to decline. It was thanks to the real experts here that I managed to eventually join up the pieces of the puzzle....and function again. These people were my inspiration.
We know of at least one woman who has committed suicide because of the disease and of others who have come close to doing so....I understand why.
It's not just friends and family we need to convince that this can be a hugely challenging and often complex condition, but the medical profession who are leaving so many people struggling because the establishment choose to sideline the science in favour out inadequate treatment.
If Chris Kamara can give anyone hope then that is wonderful, he sounds like a lovely man....the problem is that patients need more than hope they also need effective help.
Having read posts on this forum almost daily for several years it is clear that effective treatment, for the cohort who do not respond to basic LT4 therapy, is in short supply... as many of us have discovered.
I hope Chris Kamara gets the help he needs, and makes a speedy recovery.
And I wish the same for all thyroid patients.
It would be interesting to hear from him in a couple of years time to see how he has progressed on medication.
I remember being told by my GP that Levo is fantastic and that i'd feel so much better soon - and would also loose my midriff tyre that seemed at odds with what I was eating!
6 years on and although it has certainly helped the horrible migraines I used to suffer (which is of huge benefit) I still have lots of brain fog and the same tyre 🙂. But I guess I don't know how I'd feel now if I hadn't had the medication either.
For me it was reassuring to read a plight from another male - there seems to be such a disparity for me in hearing the effects or personal stories from other men. There still seems to be a stigma in revealing how we feel or how we're coping, and can fully relate to Chris' story . I wonder how many members here are male?
There are some men here but the majority seem to be female. It would be interesting to see if that accurately reflects the incidence. I’ve heard 1:10 and 1:8 given as the ratio of men to women with thyroid disorder so even that isn’t agreed upon.
"It would be interesting to hear from him in a couple of years time to see how he has progressed on medication." I couldn't agree more, but the difference is,,,,,,,,,,,,,,,,,,,he won't have to be reliant on monotherapy on the NHS...........or struggle to get an NHS Endo referral.
All 'celebrities' seem to go quiet on the subject of medication.
@TSH110 posted an interview with Michael Rosen & The Thyroid Trust a few months back.
Shaun Ryder (of the Happy Mondays) also has hypothyroidism, diagnosed quite some time ago, he was already on Levo when he went into the jungle (I'm a Celebrity) back in 2010. He actually seems heavier now than he was back then.
I didn't know he has hypothyroidism. Did a bit of googling and found this about him possibly having long covid. independent.co.uk/arts-ente...
His opening words in the video clip are 'Every now and then I'll wake up with no energy and I'll spend that day falling asleep'.
Sounds familiar doesn't it!
Did you see the Daily Mail article, it's an older article than any others I've found (2010) but I can't find out when he was originally diagnosed hypothyroid.
dailymail.co.uk/health/arti...
His current appearance suggests he might be undermedicated but, of course, with his previous rock and roll lifestyle and other recent health problems who knows.
Simon Marsh, a surgeon at The London Thyroid Clinic: "Symptoms are non-specific, so the fact they stem from a problem with the thyroid may not be obvious, even to a doctor. Consequently, people may suffer for a long time.’'
Why oh why, when we are also being told that this is such a common disease, are doctors consistently missing this potential diagnosis and leaving people to suffer for years and years.
I know that was ten years ago, but really, nothing has changed has it! 😡😡😡
I know that was ten years ago, but really, nothing has changed has it!
I have a feeling it never will. I can't understand why, as it's so common, doctors seem to know so little about it nor are they willing to look deeper to try and understand it. Goodness knows, there are many patients seeing both GPs and endos who don't get well you'd think a light bulb moment would occur occasionally with some of these medical professionals!
Maybe the problem is that they sideline the science in favour of the outdated views of their peers. Or, fear questioning the views held by the lot at the top of the heap who might do well to come down off their high horses and listen to lesser mortals!!!
Man has brilliantly managed to get the James Webb telescope into deep space yet we still don't have medics who understand the complexities of thyroid disease.
It's not rocket science!
Ah....but they are medics, not scientists!!
I totally agree...you'd think a light bulb moment would occur occasionally with some of these medical professionals!
Gŕrrrrrrrr!
Very good point about the male/female ratio, I hadn't thought about it from that perspective.
Out of interest is the male/female disparity because women are more likely to suffer from thyroid issues or because men are less likely to go to the doctor about their symptoms?
This answer is rather vague, sorry.
The most common type of hypothyroidism is primary hypothyroidism i.e. it is the thyroid itself which doesn't work well, rather than the pituitary or the hypothalamus..
Primary hypothyroidism is most commonly caused by autoimmune disease in the western world (as far as I know). in other parts of the world iodine deficiency is the commonest cause.
All autoimmune diseases (as far as I know) are more common in women than men.
This is interesting, it's especially interesting that he found people were kind and sympathetic towards him after his diagnosis. I am truly pleased for him that he got that support but my experience was completely different! My family and friends didn't say much about it at all when I told them and I've virtually had no sympathy from anyone. Most people just look blankly at me when I mention it or say something along the lines that they think they may have a problem too and talk about themselves after that. I actually think that some people don't think I am hypothyroid because I haven't put on weight. In fact before being diagnosed I lost weight and looked a bit gaunt. I've put weight on since taking levo and I look better for it. The only empathy I've received is from my neice who also suffers with thyroid problems and has other severe health problems. She calls me once a week and I try to educate her about what I've learned from the good people on here. If it wasn't for this forum I don't know how I'd coped over the last two years. Knowing that others are experiencing what I've been experiencing and reading the excellent advice from the adminstrators and not forgetting Greygoose on here has helped me stay sane and plough on patiently. Hopefully I haven't bored my family and friends with it all too much but sometimes I just can't hide how tired and unwell I'm feeling. I try not to say too much because I think most people think I'm making too much of a fuss about it.
So sorry to hear about your experience!
Yes I found it took several years and an eventual diagnosis to persuade my friends that I wasn't just being a hypochondriac and I was genuinely struggling - I've found that with hypo even when I'm rock bottom exhausted I don't yawn like I would with normal tiredness, my brain/body just crashes. Maybe people just assumed I was exaggerating, but I have been excruciatingly aware that people just don't 'get it' and don't really want to be bored by the details. I agree this forum and the people in it have been an absolute godsend!
I hope the likes of Chris Kamara might help raise awareness of the issue amongst the wider public, both to help people get diagnosed and also to spread a little compassion.
I agree, thyroid problems don't get a lot of public attention so when someone famous talks about it, it helps to get a bit of discussion and awareness out there. I think people's perception of it is that its easily treatable and not life threatening so they don't really want to know about it. Until that is if they're unfortunate enough to be diagnosed themselves. If I do get to talk about it with someone I find it so hard to describe how it feels. One friend just said to me the other day, "oh we're just getting old". I just shut up after that, no understanding whatsoever! Lol
I have added Chris Kamara to the list of famous people suffering from thyroid issues, which is now in my Vade Mecum document.
If anyone has further suggestions for inclusion, please let me know.
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
Not everything is in this one document - my major medicines document is still separate!
From Dropbox:
dropbox.com/s/vp5ct1cwc03bl...
From Google Drive:
drive.google.com/file/d/1ZW...
Thanks for this Helvella some surprising names on there. What an amazing document! You certainly know your stuff 👍
I'm speechless!
What an amazing volume of work....plus another!
Do you ever sleep!!
Thank you helvella
Thyroid S - still struggling
Struggling with Underactive Thyroid
Struggling with Thyroid Eye Disease
Under active Thyroid and struggling with Lack of T4 and low TSH
