I see that lady gaga has fibro. I wonder if she has checked all her thyroid panel properly. I suppose with her money that she can afford to do that. My cousin had fibro and died of diabetes and heart failure. I always wonder if the fibro was the cause of it.
lady gaga has fibro: I see that lady gaga has... - Thyroid UK
lady gaga has fibro
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selftreatendo
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Even with her money she could still be told by ignorant doctors that there's nothing wrong with her thyroid!
Yes true. However I guess she must have had the whole lot of thyroid tests and they might be in the range. They prob tested her antibodies too I would imagine. Noone seems to have figured out what fibro is yet. My cousin had pains in all sorts of places I think come and go.
I don't think it's a given that she's had her thyroid tested. Doctors seem very reluctant to do that. Fibro is so often a dustbin diagnosis, just to get the patient off the doctor's hands when he has no idea what's really wrong with her.
I remember Kirsty Young was also diagnosed with that. I loved her on desert island discs and she had to give it up because of her illness. Bet it was meno/thyroid. Fibro is a cop out used by doctors who know nothing of women’s hormones. Anyone who diagnosed me with that would be sacked immediately.
Well my cousin who had Fibro was a man so it could not have been meno for him. But I read somewhere that having diabetes is a risk factor to get Fibro.
news-medical.net/health/Fib...
I had Post Viral Fatigue Syndrome (ME.CFS) but I recovered after many years of symptoms. My tests were always normal. The GP could not find anything wrong on testing so I got this diagnosis PVFS. Some people think it is a real illness and some people don't. The people who think it is real usually have it and all standard tests are usually normal I think.
I’ve no doubt the symptoms for some are very real, however, there’s a disproportionate number of menopausal women who are labelled with this diagnosis from medics who know little of the endocrine system, and these women live a life of misery when, with accurate testing, they’d find the root cause of their symptoms.
Normal means the result was in range - but it is where the result lies in the range that is key ... hence the importance of obtaining results with ranges to check.
My naturopath used to say fibromyalgia and chronic fatigue are symptoms of chronic infections like Lyme disease and viruses like EBV & CMV.
I think she could have been right - chronic infections cause all sorts of serious health issues as a result of chronic inflammation.
Worth getting tested if you can afford it but go to a lab that tests for these pathogens. Not many do in the UK.
All the best in your return to good health. We all deserve that.
SlowDragonAdministrator
Fibromyalgia patients often have low Ft3
Few links about fibromyalgia
healthrising.org/blog/2019/...
thyroiduk.org/tuk/research/...
stopthethyroidmadness.com/f...
prohealth.com/library/new-t...
chriskresser.com/low-t3-syn...
holtorfmed.com/download/chr...
SlowDragon If they were low in T3 then they could get treated surely? They said the same for ME/CFS ie that certain people are low in circulating T3. However mine has always been completely normal yet I had ME/CFS. I think what you describe is a secondary problem in some people with Fibro not a primary cause. But I don't know. It would have been worked out by now if it was the primary cause as low T3 would be easy to find and treat I guess.
Some (limited) research suggests treatment with T3 can bring improvements
Hi selftreatendo. This might explain why fibromyalgia patients improve on T3:
thyroiduk.org/getting-a-dia...
"The DIO2 gene activates triiodothyronine (T3) and the researchers found that a tiny change in this gene could mean that although the body gets enough T3, the brain doesn’t."
"Because this gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal."
You can have loads of circulating T3 but if it can't get into the cells it's useless. You need glucose to let T3 into the cell. CFS,ME and Fibromyalgia are due to low cortisol causing low glucose. That's what causes the pain and lack of energy. That's why stress of any kind makes it worse. When under stress someone with low cortisol cannot produce enough cortisol to compensate.
magsyh Well magsyh you might well be right about T3 and ME/CFS/FM but if it is true, how come the world's medical professions don't know this then? Are they missing something? I don;t think I have or had low cortisol. But I never had a cortisol test anyway so I don't know.
The trouble with doctors is they don't look at the big picture and they have no intention of trying to cure anything. They always look for a solution with a prescription attached to it. I'm sure many functional docs have worked it out and have cured many patients but they are looked upon as quacks. Sadly it's all about money and as I have discovered even good docs are out to make money so them that can cure you will charge a fortune for tests and sell you costly supplements. It's taken me years of research to discover this much so now I intend to do all I can to fix myself. I would recommend you check your adrenals with a saliva test.
magsyh What does cortisol do then to cause ME CFS FM? A GP would easily spot an adrenal problem I would have thought when he first tests you? My sypmtoms after a slight relapse are mostly PEM (blood flow goes for an hour or two in the brain after walking to the shops and shopping and walking back) and Aerobic exercise function. (FYI I have never had an exercise Aerobic function test ever and my GP never suggests it becuase he probably thinks I am a nutcase.) LOL. I just wish I knew why my PEM slipped after this slight relapse. Before, I was mostly alright.
Traditionally trained medics only recognise Addison’s or Cushing’s disease....nothing in between
NHS still doesn’t offer saliva cortisol and DHEA testing
regeneruslabs.com/products/...
cdn.shopify.com/s/files/1/0...
Why gluten intolerance can upset cortisol levels
kalishinstitute.com/blog/gl...
Dr Rangan Chatterjee has lots of tips on improving stress response
getthegloss.com/article/how...
getthegloss.com/video/our-t...
when I click on these links - which I would love to read - I'm getting a message telling me the page no longer exists - can you help?
Looks like temporary IT issues...
No links working
I will flag it to IT support
Thanks - I have tried to click on links in other posts and am finding the same problem - was beginning to think it was something wrong at my end
Redlester, this seems to be happening with many or all links going out from this forum at the moment. It's clearly a technical issue on the HU platform. Hopefully the HU tech team will fix it soon 
I am at the moment experiencing more pain and muscle/joint weakness than usual. I am on 75mcg t3 only i have very low cortisol and have 10mg hydrocortisone to take when stressed. I have a rheumatology appt in July, been having physio twice a week for months and no improvement in my left thigh. I am taking pain killers every day and have been bed bound for few months (so lock down was a convenient time for me) I have been on 150mcg t3 at one point but no improvement in symptoms to 75mcg, my t3 tests are over range 2-6 hours after my t3 dose but no way of telling what is be used rather than sloshing around in my blood. Im interested in t3/cortisol & glucose connection to see if this helps, any pointers would be appreciated. x
Your not on enough hydrocortisone for a start. Like I said earlier if your cortisol is too low you can throw all the T3 at it you like and it won't enter your cells due to lack of glucose. You should be on 10mg hydrocortisone first thing in morning then 5mg at lunch, 2.5mg at teatime and 2.5 mg before bed. As long as you don't use more than 10mg at a time you won't shut down your ACTH. You have to be careful as with so much T3 lying in your blood from high dosing if the hydrocortisone kicks in you may have serious adrenaline rush. As all of a sudden the T3 will hit your cells.
Ok thats food for thought, I can happily reduce my t3 if the steroids will improve that, any suggestion how much by. It took me 5 years to get some balance by taking t3, i was cortisol tested 2016 105 (150-550)
2018 95 (150-550) hence why endo gave my hydrocortisone tablets but he is worried i will stop my adrenal gland working completely, i have been unable to find a dr who has any idea and now moved to france, no problem being prescribed t3 and hydrocortisone here but no real guidance. Dr will only go as high as 10mg a day, i have some from greece 20mg tablets so i have room to experiment. I sometimes wonder if i will ever get to grips with all this stuff!
At least my dr here understands that i take a huge dose to feel vaguely alive but still have pain and fatigue. I didnt feel any better on 150mcg t3 and i do feel its all sloshing about, i am so much better than i was on levo, endo saw right away i dont convert but i am still living a diminished life (i do have some great days each month) i have rather settled at 'is this as good as it gets' my uk endo always tested my SHBG for saturation 58 (70-90) so i was even low on that. Its such a bloomin minefield i have to let it go as i drive myself mad but maybe this is the last bit of the puzzle. x
Do you have problems with adrenaline? That's my biggest problem. I can't get the doc to listen. When I mentioned Adrenal insufficiency she laughed! Yes docs are afraid of hydrocortisone that's the problem. You need to keep to your daily rythm and keep individual doses 10mg or below. Stop thyroid madness has an excellent chapter in book all about treatment of low cortisol
Yes the adrenaline surges were awful, thankfully rare now. It was explained to me that lack of cortisol causes adrenaline surge, too little cortisol kicks in adrenaline production as a reaction to stress, the adrenaline causes internal tremor and anxiety, thyroid illness is the gift that keeps giving, always something, bit like putting out fires!
you have my sympathy - I am in a similar situation, but I'd be scared to use steroids as I'd be worried about completely wiping out my gland - is there nothing 'natural/alternative' you can use which would boost the low cortisol without being a steroid?
Yes i have tried all the herbs and supplements, my cortisol is very low 95 (150-550) so it needs more ooomph than supplements, slightly low cortisol responds well and can also push it over if not tested regularly. I also fear the switching off what is left of my active adrenal gland but even Paul Robinsons CT3M (circadian t3 method) didnt budge mine up and he said mine is too low to 'tweak'
Dr Peatfield said years of under & no treatment pushed mine to the limit and they havent recovered.
I have been mulling over doing a trial of the CT3M but might just stick with my current mode of T3 dosing [all in one dose] in light of what you say. What did you mean when you said "slightly low cortisol responds well and can also push it over if not tested regularly. " ? - I am afraid I didn't understand that part.
If you take cortisol boosting herbs and don't check every 6 months you can easily end up with high cortisol which is as bad as too low. Search cortisol on here there have a few really good in depth threads.
CT3M is more about taking t3 at correct time in your circadian cycle to boost your cortisol at it's peak, we are all diff but it means tiny changes over months, I don't have that sort of patience, plus I can't see the point of setting my alarm for 4am and 7am to take 5mcg t3 as I think solid sleep is more important for me.
My cortisol isn't low, it is way under range.
Thanks endomad - I understand now what you mean re the cortisol and its response. Was thinking of trying holy basil but will test first and search the site for the threads you refer to. I agree re the CT3M - I too would find that tremendously difficult to do as I struggle with sleep as is and don't want to make it worse.
Some people do really well with Holy basil but it made me really sick lol typical. Also for me splitting my t3 doses didnt work, it just seemed to eek out feeling tired. It was explained by a thyroid dr (Dr Lowe i think) if you drip water on a sponge it stays dry, it needs to be soaked, all the water at once. I take all mine at bedtime then i can forget about it but we are all different. x
That's a shame about the holy basil - if I try it I hope it won't do that to me - I have more than enough sickness going on without adding to it!! My other herb I was thinking about was gymnema sylvestre - did you ever try that? I agree with you about the T3 - I take mine all at once when I wake up in the early hours for a bathroom break - the split doing might suit some people but then maybe they have different needs.
No I didn't try GS there came a time for me that I just got fed up. A few years of trying everything in isolation, all the trial and error just got frustrating, not to mention very expensive. I get steroids on prescription and use them when stressed or in pain but taking them daily makes my weight problem even worse. I have sort of accepted that this is as good as it gets but still get hopeful.
That sounds difficult and frustrating. I know what you mean - I have a kitchen drawer [and now an overflow box] full of stuff - a lot of which was expensive and well researched but which I cannot use, or cannot use for the time being. But you have to try things and you can never give up.
Since I have gotten optimal (Armour+cytomel) treatment, my Fibro and CFS have disappeared.
shawsAdministrator
I hope she has a good doctor who will be knowledgeable that her T3 may be low. Her FT4 and FT3 should be checked.
One of Thyroiuk's Advisers was an expert in Fibromyalgia and stated the cause was low T3.
I saw Dr Hyams once here in the UK when he used to treat ME/CFS
He put this on his website. DOn't know if it helps.
After a few years of borderline thyroid issues, unexplained illnesses, iron malabsorption, hair loss, anxiety, heavy periods, epilepsy and CFS, a functional professor Diagnosed me with FND - functional neurological disorder due to trauma. Since then I have started to address everything, though at first I felt it a cop out to say these very real and sometimes measurable symptoms could in a sense be ‘mental/emotionally’ induced. But there be the problem with modern medicine, separating mind and body. Stress, an emotional state, has been proven to cause disease. I feel strongly that the suffering of largely women with this very specific group of illnesses along with thyroid may do well to look at somatic roots? Xx
Maevie100 Sorry to say but a FND is no diagnosis at all I think. It means "I do not know what is wrong" just like CFS is also not really a diagnosis of what is wrong. I would go back and ask for a proper neurological assessment if that is the area where you think your problems lie.
For me, it was the correct and welcome diagnosis. And it has enabled me to resolve years of debilitating symptoms and thyroid imbalance. He was a surprisingly holistic consultant for the NHS!
Some things have reared up again over Covid (stress based) and the low ferritin has been a tougher nut to crack. But a mixture of lifestyle changes, job change to less stress, trauma therapy, body awareness and lower carb diet has literally solved it for me. My message above was to share my experience, I am not seeking advice. FND is little understood but I can attest that it certainly can be a diagnosis and a route to healing It also explained my childhood epilepsy.
What does FND mean? What causes it?
Functional neurological disorder x
Unfortunately it’s left to the individual as you all have no doubt experienced from awful doctors, to do the digging for it xx wishing you all healing x
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