Hypothyroidism & statins: My GP is pressurising... - Thyroid UK

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Hypothyroidism & statins

waveylines profile image
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My GP is pressurising me to take a statin. My cholesterol levels are all within range. I do have P-Afib treated with Verapamil & take a blood pressure tablet. I notice that Hypothyroidism and statins on the NHS website are not advised. Appreciate any comments, research etc. Thank you! Here is the link to the NHS website:-

nhs.uk/conditions/statins/c....

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waveylines profile image
waveylines
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radd profile image
radd

waveylines,

Statins have an awfully bad rep and aren't encouraged on this forum because high cholesterol is a symptom of hypothyroidism that reverses once thyroid hormones are optimised. But more to the point why is your GP suggesting statins if your cholesterol isn't even high?

waveylines profile image
waveylines in reply to radd

Apparrantly GPs have a computer programme in which they input info about your health. My score was 18% , max is 10% She didnt explain how they arrived at this figure.....Ive a feeling being if a certain age & female will figure in it From that programme they deduce whether you at a higher risk of a heart attack or stroke.

So because I have P- Afib well managed and have to take a blood pressure tablet - both a consequence of cardiotoxicity from successful but aggressive BC treatment, plus an anti coagulant to reduce risk of stroke from the Afib the argument is that taking statins will stop arteries & veins becoming rigid in old age thereby lowering strokes and heart attacks. Dont ask my by how much they dont seem to know!! My GP tried to argue.that if I didnt I would die in 20yrs from a heart attack! I said I will be 86 by then!! She really tried to pressurise me but with no real concrete facts to substantiate her claim. Though frankly being a cancer survivor to live till I'm 86yrs old would be amazing....so more than happy with that!! In addition the heart drug I take for my P-Afib, Verapamil is contrary indicated for statins! A little fact that my GP never noticed....The British Heart Foundation are arguing that you can't have too low cholesterol so if you are in range you should still take it. Argument is it stops plaque dropping of your arterial walls & prevents it forming...

Lastly on the NHS site it says statins cause added complications when you have Hypothyroidism.

Altogether it seems a dynamite mix to me!

And based on this programme I've a sneaky feeling you're likely to told you need to go on statins at some point in your life!! Big pharma at work??

userotc profile image
userotc in reply to waveylines

Much to cover in your comments but briefly:1. The 18% figure will probably be the cardiovascular Qrisk2 factor which is an algorithm based on several factors incl age, gender, family history, BP, cholesterol..... So basically most will exceed the now 10% threshold which was 20% until a few yrs ago (cynically, when statin sales had reduced!). Note: My dad is stable around 16%, no statins. He is ~10% via other such algorithms from reputable organisations, there's several but strangely NHS prefer Qrisk2!!!.

2. You say BHF state cholesterol can't be too low but I'd strongly challenge that. There's plenty scientific evidence that low cholesterol is bad for mortality eg google Malcolm Kendrick.

3. The above indicates I disagree with docs which I generally do, as they generally just sell drugs! However, the renowned cardiologist Dr Aseem Malhotra believes high-risk (only) should consider statins. In a video I linked on HU a few days ago, he stated that and seemed to imply he meant only those >20%. However, you've indicated cardio issues so maybe he/other experts would consider you high risk. Ideally contact Dr Malhotra or maybe another cardio expert but I suggest only after optimising thyroid?

Much to consider. Let me know if you want links re any key points above or Google. Best of luck.

radd profile image
radd in reply to waveylines

waveylines,

I was told to take statins after my stroke but ignored it because my cholesterol levels are fine and my blood clotting factor normal. There was no evidence of a bleed or clot and I suspect it the result of a certain vacs.

Thank goodness you have the knowledge and tenacity to be able to advocate for own self during this recent ghastly GP experience

Sparklingsunshine profile image
Sparklingsunshine in reply to waveylines

It seems doctors dont consider that some of us aren't bothered about reaching a ripe old age. My mum recently passed away aged 93, at the end she was both blind, deaf, immobile, in contant pain with arthritis with no quality of life.

For her death was a huge relief. Personally I'd rather die a few years earlier in reasonably good health than linger on in a twilight of poor health, with nothing to look forward to. As someone once said "I'm here for a good time, not a long time"

shaws profile image
shawsAdministrator in reply to Sparklingsunshine

I have had more than one stupid statement from GP and told him he was wrong.

waveylines profile image
waveylines in reply to shaws

Good for you Shaws. I dread those rare GP consults- it always seems to lead to me having to explain as politely as possible my health conditions to correct assumptions....or lack of awareness of my case file. ....or their lack of knowledge over meds prescribed. So I dread the phone calls.....can't even pick a GP these days. Its like Russion roulette.....except I feel shot everytime. 🤣

shaws profile image
shawsAdministrator in reply to waveylines

We used to rely upon our GPs.

I believe Dr Peatfield and Dr Skinner were the 'last of the knowledgeable doctors who didn't rely upon blood tests to diagnose what was wrong with their patients.

The worst thing in my family was my Mother's advice from her GP who told her that her blood test was fine and needed no more B12 injections. The fact was that she had Pernicious Anaemia

Having no internet connection at the time I thought that was 'good advice. Unfortunately it was awful as my Mother developed stomach cancer and I put it down to GPs advice.

I also developed Pernicious Anaemia but GP told me I can have as many B12 injections that I felt I needed.

waveylines profile image
waveylines in reply to shaws

I am so sorry about your Mum. Absolutely awful that she was told to stop injecting. So sorry for your loss Shaws.

I am glad your GP lets you inject as often as you need. That's good & as it should be. Long may it continue. Progress would be if the NHS & GPs stopped pretending that they can manage patients with conditions they know nothing about!! They can't do it. They unintentionally cause soooo much suffering and harm.....a computer screen to guide them cannot replace a knowledgeable & skilled doctor. I saw both Dr Skinner & Dr Peatfield. Dr Skinner treated me for several years. I still miss him & yes they both were the last of the old school doctors trained to observe, examine & listen to make diagnosi.......a lost critical skill which has set the health of the country way back. I do not know why GPs persist with phone calls to make a diagnosis. Its ridiculous and tragic......as the appalling case of the young man who died because he never had a face to face consultation tragically shows.... Post op...I had a UTI recently and no chance of a GP app so booked free private GP call on my health care plan. He was honest and said it does sound like a UTI but said, I can't prescribe over the phone as I need to see you to analyse your urine to see what antibiotic to prescribe. I appreciated his honesty. I went back to the hospital where I was seen & they sorted it for me.

A GP phoned me the next day & said what can we do for you.....he wasn't even aware of what I'd told the receptionist. I feel if they can't manage the simple thing like reading their email messages or case notes what chance have they of managing chronic conditions! None!

Titaniumfox profile image
Titaniumfox in reply to waveylines

I'm incredibly impressed your GP is psychic! Can she tell you the winning numbers of the National Lottery? 😂

waveylines profile image
waveylines in reply to Titaniumfox

Haha!!! If only.....

SlowDragon profile image
SlowDragonAdministrator

What are your most recent thyroid and vitamin results?

HashiFedUp profile image
HashiFedUp

my uncle - who has hashimotos / UAT - was given statins, and he has experienced muscle wastage in his legs to the point he can now barely walk. He is 80 but I believe the deterioration is down to the statins. I would consult an endocrinologist before taking the statins as they are much more knowledgeable. Especially as your cholesterol is within range ie what is the GPs justification? Often we can’t get the medication we actual need from doctors nowadays so this made me smile 😊 x

buddy99 profile image
buddy99 in reply to HashiFedUp

I took statins and had excruciating pain in muscles I previously didn't even know I had. My TSH at the time was 12 (0.4-4). I'd rather give birth to 10 more kids than take statins ever again. :D

Marymary7 profile image
Marymary7

I agree HashiFedUp . My friend is now in a wheelchair due to Statins. He used to be a strapping man. Now all his muscles are seemingly melting away. A known side effect. Disgusting.

shaws profile image
shawsAdministrator in reply to Marymary7

It is a pity that tablets we are prescribed and what we thought would resolve the condition backfires and we may develop another condition.

Your friend has had an awful experience and will be very wary if he is given any other prescriptions.

Marymary7 profile image
Marymary7 in reply to shaws

So very sad for my friends. She is his carer now, getting weaker every day. I tried to get him to at least take CoQ10 to try something but after the specialist gave them they were abandoned after a few weeks. He won’t take anything now and is in pain. Big pharma make money and the NHS will bear the cost of the side effects

Makes me very angry that they are pushing Statins like mad on innocent folk. Some people have a genetic predisposition to have a problem with them.

waveylines profile image
waveylines in reply to Marymary7

Marymary7 that is such sad news. Poor man - dreadful. Why isn't the neurologist following him through? He shouldn't be abandoned like this.

Marymary7 profile image
Marymary7 in reply to waveylines

It is terrible. He does see his specialist regularly. He’s going to this month. They offer him nothing. He had a physio offer exercises but he cant do anything now. It’s just a case of what adapters he needs next. Already got a hospital bed that moves and a chair that raises him. Incredibly sad for my pals.

waveylines profile image
waveylines in reply to Marymary7

Marymary I am so so sorry. Must be so hard to watch your friend deteriorate like that.

nettecologne profile image
nettecologne in reply to Marymary7

Is he still on them?

Marymary7 profile image
Marymary7 in reply to nettecologne

No he came off them many years ago.

nettecologne profile image
nettecologne in reply to Marymary7

ncbi.nlm.nih.gov/pmc/articl...

Just found this, I will follow it up as my DH also has muscle wasting and I could swear it started when on statins, only did not stop when off.

Marymary7 profile image
Marymary7 in reply to nettecologne

Thanks, that’s an interesting article. I note that rituximab 1,000 mg  was the only thing that helped the lady but on further reading there is a possibility of heart problems on that drug infusion. My youngest brother has MS and he has that infusion every six months, he can’t walk , so its hasn’t helped him. I think my friends would be worried about heart attacks with the drug but I will forward this paper.

I’m convinced the thyroid is implicated in my friends case, he has the loss of outer eyebrow and there is this connection with his condition but he says they tested for that…. We know that thyroid is rarely treated properly. Maybe I could persuade them to do a private blood test with medichecks.

snow22 profile image
snow22

watch statin nation film on YouTube is all due to medical corruption. Also cardiologist Dr Malhotra talks on statins. The link was in a post on here a few days ago about the drs being told to hand out more statins 15m article in the Guardian. You should defiantly read the post. By Witchinghour 7 days ago.

waveylines profile image
waveylines in reply to snow22

Thank you

Tena01 profile image
Tena01

I would not take a statin if you paid me. I noticed I read something a few days ago your country is encouraging everyone over 50 to get on them . That I find strange. They cause more problems then help . You will end up taking a shoe box of different meds.Big pharma works like that.

arTistapple profile image
arTistapple

Lots of people are going through this type of pressure from their GPs at the moment. It’s definitely a push. No individualising of patients cases. GPs totally ‘believe’ in statins and think everyone should be on them. According to a recent article on tv, newspapers etc even more people will be ‘allowed’ statins. Whilst I admit my trust in doctors has never been lower; my GPs, even when quietly challenged look like rabbits in the headlights. There is no expectation that the patient will refuse! I have had at least one heart attack twenty years ago and only briefly was on statins until I read a book by a someone totally undermining the underpinning of the research results - professor Campbell if I recall but maybe it was McKendrick or Kendrick - a Scottish name anyway. It was all about statistics and how they had been interpreted. Sounds similar to how a lot of thyroid research has been done. Do we want to be tangled up in both? Not me. I know I need thyroid hormones quite clearly and I know I do not need statins. Since starting levo my levels have dropped 3.1 alone after being at the top of the range for about twenty years.

humanbean profile image
humanbean

I have read that once people reach a certain age - and I'm not sure what that age is - the QRISK calculators recommend statins for everyone. It makes no difference what your cholesterol or blood pressure or other factors are. Once you get to this particular age you are advised to take statins.

The latest version of the QRISK calculator is the third one :

qrisk.org/three/

According to Dr Malcolm Kendrick the QRISK calculators multiply the real risks by 5 or 6 times.

Nothing would persuade me to take statins.

I like these links :

drmalcolmkendrick.org/2012/...

spacedoc.com/articles/50-fa...

For more info I also like these posts from a diabetes forum :

diabetes.co.uk/forum/thread...

diabetes.co.uk/forum/thread...

...

I had problems with recurring severe chest pain and tachycardia about 10 or 12 years ago and was referred to cardiology. I ended up being recommended to take statins, and it was my GP who broke the news to me. I refused. After I refused my GP said "He [the cardiologist] recommended a very high dose too". I wonder if my GP would have told me that if I hadn't refused.

When I was seen by cardiology they couldn't come up with a reason for my chest pain and tachycardia. But I found out the cause for myself. It was thanks to my extremely low iron and my chronic bleed caused by a bleeding polyp. After the polyp was eventually found and removed (it took three hospitals to find it despite it being huge), and I started treating my own iron levels the incidents of chest pain gradually went away.

My cholesterol is still extremely high, but I refuse to go on any treatment that could cause pain doctors won't care about, won't believe, won't address, and will dismiss. I'm also not convinced that statins will prolong my life, so why bother?

Sparklingsunshine profile image
Sparklingsunshine in reply to humanbean

And whilst they may prolong your life, what sort of life would it be? Its one thing prolonging life if its of good quality to the patient and of course that is very subjective and varies enormously, quite another if you're merely existing.

I find the medical profession some of the biggest hypocrites around, on the one hand preserve life no matter what, no matter even if the patient is asking you not to. On the other deny people the medications and treatments that could have a huge impact on their quality of life.

I 'm thinking of thyroid in particular, but of course there are many other poorly treated conditions.

humanbean profile image
humanbean in reply to Sparklingsunshine

And whilst they may prolong your life, what sort of life would it be? Its one thing prolonging life if its of good quality to the patient and of course that is very subjective and varies enormously, quite another if you're merely existing.

100% agree!

waveylines profile image
waveylines in reply to Sparklingsunshine

Absolutely! The problem is that research is often telescopic. It looks at a specific aspect of a drug they want to use but don't consider the other effects that might happen. Eg Estrogen blockers for post BC treatment are prescribed to reduce reoccurance, first five years can be a massive reduction in reoccurance....but now have people on it 10yrs as it still help s to prevent reoccurance (5% improvement) but now after years of women complaining about side effects they've just discovered it has a deleterious effect on the brain functioning & causes prolapses & incontinence in 30% of patients. Blanket treatments inevitably have their drawbacks as they're not designed for the individual. We are all different. My thinking is the body produces cholesterol for a reason....nuking it will bring other consequences that years later they may eventually find out.

Sparklingsunshine profile image
Sparklingsunshine in reply to waveylines

I found it very interesting that many drug trials often didnt include women, older people or those from ethnic minorities, so the data was skewed and only really showed the effect on white males. We may all be human beings but we are most definitely not the same.

humanbean profile image
humanbean in reply to waveylines

There are many side effects already known.

Increased risks of ...

1) Developing dementia

2) Developing type 2 diabetes

3) Muscle pain

4) Rhabdomyolysis (muscle destruction which also leads to severe kidney damage)

5) Stimulates atherosclerosis (hardening of the arteries)

6) And an interesting link : thennt.com/nnt/statins-for-...

waveylines profile image
waveylines in reply to humanbean

Thanks Humanbean. That's really helpful. It is truly scary this idea of blanket treating. Statins have their uses but for me it's a big fat no no. My only worry is that as Afib is regarded as a progressive condition I wanted to check if I was missing an opportunity to offset any progression. No evidence for that that I can find. NDT seems to be one of the few treatments that doesn't have long term negative consequences....only positives, if taken appropriately & optimally. Medical treatment at its best!! I'm still laughing over the GP threat that if I dont start taking statins I'll have a heart attack in 20yrs.....I will be 86 by then!! 🤣

Marymary7 profile image
Marymary7 in reply to humanbean

Yes, a money making scam. I read somewhere they give you an extra day….

waveylines profile image
waveylines in reply to humanbean

Indeed! Why bother......I don't think I've ever felt so pressured by a GP than over statins. Couldn't the money be far better spent elsewhere.....like clearing knnee/hip replacement backlog or reducing the wait time for cancer treatment. Scandalous waste of money. The video link above says - extends life by a day! Wow! I'd rather die a day younger!

waveylines profile image
waveylines in reply to humanbean

Thanks Humanbean. I did the risk assessment.....& it's the tick box for the Afib that pushes my score up. Nothing I can do about cardiotoxicity damage from cancer treatment....& I very much doubt statins would fix it!! 🤣 It's a ridiculously simple generic assessment.....am shocked GPs are basing recommendations for statins based on this. Wow! Tick box medicine!

And there's nothing about contrary indications for taking stayin in the risk assessment. Dangerous.

mrskiki profile image
mrskiki

My cholesterol is out of range but actually starting to lower gradually with increased levo doses, but they suddenly offer me statins for Christmas. Then all the headlines appeared about dishing more out. They were clueless about the hypothyroidism link when I mentioned that's why I wouldn't be taking them. I have lowish LDL and triglycerides and high HDL, they were clueless when I asked about this and what statins would do, too.

waveylines profile image
waveylines in reply to mrskiki

Indeed they are ignorant. They just peddle what they are told with no application for the individual. The senior GP who raised it with me last summer was far more aware. His comment when I declined was he completely understood and respected my perspective. I appreciated that. He said he'd put a note on my file.....didn't stop this GP using a hammer & axe approach 6 months later!

And yes my cholesterol levels were a bit high when I was undertreated for my hypothyroidism. All returned back to normal once optimally treated. For me that meant a ndt. I need some T3 in the mix. Hope your levels settle soon....

humanbean profile image
humanbean in reply to waveylines

One thing to be aware of is that high triglycerides is a warning sign of possible problems to come that shouldn't be ignored.

Cholesterol Info
waveylines profile image
waveylines in reply to humanbean

Am not sure I've had that result. Will need to check.

Marymary7 profile image
Marymary7 in reply to humanbean

Do you have any info on Triglycerides please?

humanbean profile image
humanbean in reply to Marymary7

This is a good link - it even has references (click on the little numbers within the text).

dietdoctor.com/cholesterol/...

None of the information is surprising. It is pretty much what you would expect for modern advice on healthy eating.

waveylines profile image
waveylines in reply to humanbean

Thanks Humanbean......interesting article. I don't think I was tested for this but am picking up a print out of my results. Its good to know that a low carb diet is the way to address it. Dr P was a big fan of that eating habit. I was too but now I'm eating gluten free Ihave reintroduced cereals back into my diet. Actually I was advised to do so by a bowel specialist. (Long story) and frankly his advice worked. Interesting to meet a nhs specialist who is interested in alternate ways rather than heading for big Pharma products. He also uses acupuncture to strengthen the sphincter nuscle.....with sucess. I like him.

With low carbs I found I needed some higher carbs included or I would feel tired and sluggish. So for me a lower carb diet works better. Though I'm not following it currently!!

humanbean profile image
humanbean in reply to waveylines

I found a keto/low carb diet to be tiring too. Now I just aim for what I consider "moderation". I don't ban anything.

waveylines profile image
waveylines in reply to humanbean

Totally agree. I'm a big fan of moderation!! 😊

Marymary7 profile image
Marymary7 in reply to humanbean

Thank you, most informative.

waveylines profile image
waveylines in reply to humanbean

Nope just checked they didn't test that! Lol....

Mollyfan profile image
Mollyfan in reply to humanbean

my triglycerides have dropped from 7.2 to 2.02 on T3.

No statins for me but woe betide anyone who tries to take my T3 away!

Total Cholesterol down from 6.8 to 4.7 too.

serenfach profile image
serenfach

GP - the scan shows you have a fibroid, so we will take you off HRT and do a hysterectomy.

Me - No

GP - you are also diabetic

Me - No, the blood pressure pills dropped my potassium so lessened my insulin. (blood tests 3 weeks later showed blood sugar fine)

GP - your cholesterol levels are at the high end, so we will start you on statins.

Me - statins are not recommended for people with hypothyroidism and kidney problems, and I wont take them.

GP - you are being difficult! What are you here for?

Me - to change my blood pressure tablets.

GP - OK. (Gives me a prescription for pills not recommended for those with kidney problems.)

The cost to the NHS alone would have been huge, let alone my health!

Sparklingsunshine profile image
Sparklingsunshine in reply to serenfach

I was offered Propranolol to prevent migraines, not recommended for asthmatics or hypothyroid patients. Doh! Needless to say my 5 minutes of Google beats several years of medical school.

Marymary7 profile image
Marymary7 in reply to Sparklingsunshine

I can’t take some strong painkillers like Co-codamol they completely wipe me out, don’t know why, I can’t even stay standing up I’d be weak as anything. When I had a severe mashed up broken wrist requiring a metal plate, what ever painkiller they gave me in hospital didn’t seem to work…morphine I presume. My daughter was the same when she needed morphine after birth complications…they didn’t work on her. Is it the thyroid problem I wonder?

waveylines profile image
waveylines in reply to Marymary7

I've not heard if that Mary. I've had morphine for major surgery....sent me loopy. Not a nice experience but I didn't have any pain. Lol...

Titaniumfox profile image
Titaniumfox in reply to Marymary7

No, it's not due to hypothyroidism, it's genetic. Some folk are resistant to the effects of morphine due to genes they have.

Marymary7 profile image
Marymary7 in reply to Titaniumfox

I’ve never heard of that, don’t suppose you have a link. I’d be very interested to learn why this is a no no for my daughter and myself.

buddy99 profile image
buddy99 in reply to Sparklingsunshine

In my experience doctors know very little about pharmaceuticals; they just prescribe them. Hence they also can not give the patient an awful lot of information should they be asked to do so. Different doctors have different approaches to dealing with their ignorance of the matter; some wing it, some just give you "the look" (and no answer), some try gaslighting, some get hopping mad. I found that a good pharmacist (who is willing to go against a doctor) can be a fountain of knowledge. I'm in the lucky position to have a pharmacist in the family, but have also asked other pharmacists (preferably ones who have nothing to do with the prescription). My approach, then, is to "be confused" about advice from two different doctors and not knowing which advice to take. Some pharmacists have proven to be much better listeners than doctors. And, above all, pharmaceuticals are their field of expertise. ;)

waveylines profile image
waveylines in reply to buddy99

That's useful info Buddy. I do remember it was a pharmacist who told me I needed antibiotics for bites on my legs (GP had dismissed them & the walk in centre!) couldn't get another app for a week so ended up in a&e. Long wait but well worth it.....Gave me 2 antibiotics to take at the same time. Pharmacist spot on. Same GP was shocked when he saw me a week later. OMG its spread he said.....hmmm. I needed another round of antibiotics. Wouldve been far cheaper & quicker if he'd prescribed in the first place....lol. Tbh I have very little faith in GPs these days after years of having to self diagnose & then lead them to it I no longer trust them. I check everything!

buddy99 profile image
buddy99 in reply to waveylines

I'm so with you on that, waveylines. I trusted doctors for decades despite several medical mishaps that, luckily, turned out more benign than they should have. And I had for a long time always excused those mishaps with doctors being human and thus "sh!t happens". But in the meantime I have encountered too much arrogance, deception and sheer meanness on doctors' part, that I have lost all trust. It was almost traumatic for me to come to this paradigm shift, but I live better and better with it. I check everything and will continue to do so (unless in an emergency situation where I have no say). I think many here have had bad experiences with doctors. It is good to have company in this. :)

waveylines profile image
waveylines in reply to buddy99

Indeed it is comforting to know others have had to do the same....at the same time scary that we have to. Dr Google is my best friend!! Dr Google must be the envy of many a doctor!! I know they hate Dr Google.

I've been thinking this situation has got worse.....maybe it has or maybe Ive had need of more medical input as I've aged....& find myself falling flat on my face as its just not there. In fairness I've met some great consultants who have been Brill, and a some who were truly duff & are best avoided!

nettecologne profile image
nettecologne in reply to buddy99

I discovered my breast cancer(s) myself. Thrice. Thrice I was told by several different doctors that it was a) nothing b) harmless c) a sebaceous gland d) scar tissue, take your choice. If I wasn't so lucky as to have slow growing tumors everytime, I would be dead now as thanks to docs they had lots of time to spread. This is only the tip of the iceberg. What I saw with me and my family fills a book, which I am not going to write. Mistake piled on mistake. I trust no one. I have to trust my doctors when they operate. Even then I get the operating protocol afterwards. Doctors hate me. At least I think so. But my health and that of my family is more important to me than their self importance. But every visit to a GP or specialist is stressful, extremely so.

waveylines profile image
waveylines in reply to nettecologne

It's shocking they didn't investigate. So so sorry to hear that. A healthy scheptism of medics is wise I think. I doubt they hate you because they know they'd do the same in your shoes. I no longer care if I'm liked or not, it's business -, am here to get it sorted. Am always very polite but firm. I've had specialists shout at me but I sit quietly unmoved smiling sweetly & let them rant. When they're done I speak in a slow low tone of voice clearly precisely & essentially ignore their outbursts. With one the nurse behind him was laughing till tears rolled down her face. She smiled a big grin at me.... she clearly enjoyed me quietly standing up to him. And he couldn't say I was rude or shouted or was aggressive because I wasn't. Others I've met are truly amazing & special doctors.....& I have felt blessed. It's just finding them.

serenfach profile image
serenfach

Most anaethetics dont work if you have ehlers danlos syndrome. The first sign of this is that you are flexible. There are no tests. Morphine does work for me, but sends me loopy too. As does codeine. Unfortunately most doctors do not know this and think I am being a drama queen. I have trained my dentist...

waveylines profile image
waveylines in reply to serenfach

Crikey that's scary for you serenfach. Glad the dentist was up for training....doesn't bare thinking about otherwise!

mrskiki profile image
mrskiki in reply to serenfach

Dentists have always had problems with anaesthetic, almost given up and said they can't give anymore. He put sensitive teeth/anaesthetic issue in my records. Morphine at hospital did eventually knock me out for op. I just looked up Ehlers danlos, interesting my fingers/thumb have always bent backwards to wrist much to everyone's horror, knees don't do the same thank goodness so I don't get overall high score but it makes you wonder how all these things fit together.

serenfach profile image
serenfach

I asked my vet and she immediately said "calcium channels" but I did not ask further as we were in the middle of fishing a calf out the side door of a cow that decided she was too posh to push!

I can not only touch my toes, but can put my hands flat on the floor, well, I could if the arthritis had not bent my fingers! My dentist has found one that works for me, with no adrenaline as I only have one adrenal gland and that is wonky. I will ask its name next time I see him.

Locky1971 profile image
Locky1971

I used to work in a health shop and did a lot of training. There are natural alternatives to statins like Red yeast complex and garlic capsules. There are also plant sterols. All help lower bad cholesterol and I had customers came back and tell me their cholesterol had gone down after taking them. I wouldn't take statins I would try these first. Ironically I'm 51 and never had my cholesterol tested. I'm keeping quiet about that.

I can't get T3 medication in tablets as more expensive than the capsules I can't tolerate but they'll push statins on everyone over 50. It beggars belief. I'm still arguing with my practice to get the T3.

Co enzyme Q10 can lessen the negative effects of statins.

waveylines profile image
waveylines in reply to Locky1971

Thanks Locky. My cholesterol levels are in range......but they still want me to take statins! Having done a bit of reading and thanks to useful links on here & others comments am totally unconvinced. Am shocked the NHS are spending all that money on a blanket approach to treatment for millions of patients. Never mind the fact that it is contrary indicated for hypothyroidism & one of the meds that I DO need to take.

Am sorry you are struggling to get T3. You have to see a NHS Endo in the UK- many of those won't prescribr T3 either......its all nuts! Took me 3 years to get my ndt on the NHS.....that was a while ago & I believe its even harder now to obtain. Hope you manage to breakthrough the barriers.

Locky1971 profile image
Locky1971 in reply to waveylines

Definitely stick to your guns and don't take it if you don't need it.It's mad they push statins but medication we really need we struggle due to cost. If they stopped wasting money on statins there would be money for t3.

The irony is I have been prescribed t3 by my endo and she's actually put on my notes not to dose by tsh as well as mine stays at 0.01 constantly no matter what levels of medication I'm on.

But somewhere somebody changed the tablets to capsules and no one will change it back even though only one company makes the capsules and I had a reaction to them. But if the prescription states capsules it can't be substituted for tablets as they cost more. So I'm still waiting and unless I retry and give myself a worse rash that still hasn't gone I can't get anything else and I've been told to go on t4 only what I struggle to convert. But if it was statins I'd have them in bulk 🙄

waveylines profile image
waveylines in reply to Locky1971

Oh nooo! Have you trued ringing the Endo secretary & explaining. Asking if you could go onto tablets?

Locky1971 profile image
Locky1971 in reply to waveylines

Yes. She asked the surgery to give me tablets in the interim but the ICB won't allow the surgery to change them. So last night I sent an epic email to the ICB explaining why I need the tablets. 😢Fingers crossed they see sense 🤞

waveylines profile image
waveylines in reply to Locky1971

Oh nooo. That ridiculous. Poor you. Sorry but who is the ICB?

Locky1971 profile image
Locky1971 in reply to waveylines

Independent Care Board renamed from CCG who deal with all things medical like doctors and medications. Also responsible for trying to get decent Thyroid practitioners banned from actually helping patient's because they don't agree with normal thyroid guidelines. 😢

helvella profile image
helvellaAdministratorThyroid UK in reply to Locky1971

I think it is actually Integrated Care Board. :-)

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!

Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information, an Appendix of links to many useful websites.

And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again. (You must download - not just view in a browser- for the Table of Contents to work.)

In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.

Links here:

helvella.blogspot.com/p/hel...

helvella profile image
helvellaAdministratorThyroid UK in reply to Locky1971

Red yeast isn't so much an alternative medicine as an alternative source for the self-same active ingredient as one commercial statin.

And there are questions about the doses that are received being appropriate and consistent.

ADDING:

This is a detailed account of red yeast and why it might be inappropriate to take. The active constituent is the same as lovastatin.

health.harvard.edu/choleste...

FancyPants54 profile image
FancyPants54

it was all over the news last week in the U.K., how doctors are being told we should all be taking statins now regardless of our cholesterol levels. It’s bonkers! Of course cholesterol levels can be too low. It’s a major component in our brains and vital for Vitamin D synthesis from the sun. It protects our blood vessels from damage. No way will I ever take them.

I read about cholesterol extensively years ago around the time of the last big push. It’s a massive con. There is very little difference to all cause mortality for people taking them and they can cause problems of their own. The medical experts are often paid or bribed by drug companies. This is not about our health.

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