Cant seem to win!: Fed up. My doctor... - Pernicious Anaemi...

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Cant seem to win!

Nackapan profile image
26 Replies

Fed up.

My doctor rang last night (a first when not a booked consult)

My blood results back. Iron and ferritin levels have improved. Vitamin D dropped again ? Main reason she rang was my cholesterol is the highest it's ever been .

Ratio just within norm . So something I feel I cant win. By eating g differently to raises iron I now have something elses to deal with. Shes told me to walk 2 miles daily. ....I'd love to do that !!. I've been trying so hard to build up my walking . The fatigue and mainly head pain is what stops me now. She told me the absolute opposite in previous advice. Now to push through head pain. Well I could've cried. I've tried this and I end up in bed with a vestibular/ or whatever headache. It grounds me . Then a few days of the hungover effect post headache then getting off painkillers. Then re-addressing balance issues .

I told her what id eaten that day. Porridge fruit ground nuts (every day) a banana. Brown rice ,chard, peas ,fresh tomatoes half a skinless chicken breast, plain yoghurt and 2 poppodoms as spice in the dish. 2 rich tes biscuits homemade carrot coriander soup made with red lentils . 1 slice of buttered wholemeal bread. Not buying anymore cholesterol reducing little priobitoc pots as hate them and obviously not helped me and expensive.

So in one of thises vicious circles. Have reduced liver in the hope of absorbing some b12 from it as I have red lean meat. Only have meat three to four days a week in small portions padded out with grated carrot or soya.

now as worried this would happen. Also no point if I cant absorb what I need from it but absorb the trans fats .

I do eat biscuits usually it gets me along more but part of a meal not as an empty carb. snack. Not overweight . She said on last consult not to lose any after regaining stone i lost at the start. So BMI fine.

Pre diabetes score very good .

Anyone else's had this problem with the balancing act of nutrition . B12 levels pain v exercise. I asked her to chase my referral as I've read the vestibular disturbance can causes fatigue as 3 x as much energy needed to get your body working to keep balance and headaches are caused by this. I do have better walking with a headache . Meaning a straighter line and more steady. I walk at speed as have worked on this.

How do you get across that I'm doing alot . In pain daily. Make myself walk. Love being out. Coping with day ending at 4pm as lights set off all symptoms. Tried more exposure to lights but just look like a drunk and shooting pains uo the back of head starts.

Tried low wattage and so on. I'm at a loss of what to do. Spoilt my christmas . No chocolate for me!

Some of it must be hereditary as I dont eat out or have any take outs. I do have half a single ready meal at times with loads of fresh veg. When I'm simply too ill to cook .or save the energy for a walk.

B12 injections . Is it possible your liver so busy processing the unwanted stuff thats its unable to process cholesterol as efficiently??

Clutching at straws.

Any help appreciated. It is all b12 deficiency related . Only diagnosis up to now.

.

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Nackapan
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26 Replies

I would treat this as if because your vit d has lowered your cholesterol has increased not fill my body with their toxic statins when it’s already struggling,isn’t it amazing how they can find time to call you if it’s to stick you on money making statins or some other crap but can’t address the problems that are obviously causing you such distress day in and day out.Why don’t you try the oral spray from better you d3/k2 one.you can buy reasonably from amazon.

I’ve been monitoring my husbands levels via private bloods and got him the supplements he needed and radically altered/ improved his diet ,he’s a bugger with sugar and eating rubbish,there has been a really dramatic difference in his readings.his vit d was lower than it should be at the last reading it’s gone up very nicely by using the oral spray his new readings are 111 and his cholesterol has dropped ,his b12 again by using the oral spray supplements has shot up and is a much healthier level,his prediabetis blood sugar levels have now normalised and his testosterone has increased.The doctors report congratulated him I’m so pleased.good luck Nackapan and dont lose heart your doing your best x

Nackapan profile image
Nackapan in reply to

That is good news for your husband. I'm taking k2mark7 and and oil based vit D. I will certainly get that spray when I can.

I've been on the dose of d 25ug for years. Just added the k2 since I read about it on here.

I eat very little rubbish. Loads of veg from the allotment ect ect.No alcohol. Infact everything she said to stop I have already off my own back apart from biscuits!!

It must be a mix of genetics as I was monitoring cholesteral before getting ill and actually eating less meat !! Only upped by meat hoping to absorb b12. But stopped a while back when I knew I was reliant on b12 In jections and not absorbing .well obviously every bit of bad fat I was lol.

I can only assume its lack of exercise. Difficult.

Give my Gp her due she didnt mention statins.

But checking it in 6 months time. She will then of no change for sure.

It was upsetting as she was talking as though I sit in bed all day eating biscuits. She should know me a little by now? I didnt know her before all this. As I didnt go. And then the practice was taken over.

Hope your new practice still good.

I've told her I'm trying g to walk more but it's the head pain. She actually said to push through the pain.

As if i havent tried that. !! She last said to pace and the opposite.

But yes jump on another number and not taking on board the head pains/ fragility still. She simply just dorsnt get the light sensitivity and problems with pattern glare ect

Of course today banging head tinnitus gone mad and can hardly move.

Shoukd be on my walk now but will probably have to doze on pain killers.

Another day

Hope you are doing better

Thanks for your kind reply.

in reply to Nackapan

Dont let them knock your confidence Nackapan trust in your own abilities.I’m still battling away this new lot of gps are worse than the last he couldn’t get me out of there quick enough said let your professor refer you to neuro and let me know how it goes,refused to discuss anything else said one thing only and just looked like a rabbit in the headlights.I’ve had such yuk neuro symptoms that really scared me this last week and of course I tried to reduce my frequency again with disastrous results I do need a good talking to sometimes don't I lol.My lovely professor had a consult with a neuro colleague about me and they agreed I do need to discuss these symptoms with a competent neuro so he emailed me this morning to tell me he’s doing a letter to a neuro in oxford so not to worry.I am just so grateful to my professor he does so much of the stuff that I ask him but doesent chase the fees I know he could charge me a fortune but he doesent he tries his best to work within the system but if gps choose not to play ball his hands are tied too,he said to me on the phone on day your gps are bloody useless,I replied now you know why I rely on you lol.anyway it’s just a long plod for me as usual but I’ll get there xx

Nackapan profile image
Nackapan in reply to

Oh what a shame youve gor another useless lot. It started with some hope .

I canr write what my husband called my G.p. .

You are right I will have to gain momentum again.

Sounds like 'your' prof. A good un .

T c

JanD236 profile image
JanD236

Genetics, age and menopause can all lead to an increase cholesterol levels. Maybe menopause is what has tipped the balance rather than B12 issues?

Nackapan profile image
Nackapan in reply to JanD236

That was over 5 years ago . I think like everything it's a combination. Of things.

deniseinmilden profile image
deniseinmilden

Oh, Sweetheart, I am so sorry you feel like this!

First things first - you are doing the right things so don't dispair. If you naturally have high cholesterol your body will cope better than if you have the wrong lifestyle.

A few chocolates at Christmas will not kill you so make sure you look forward to those and whatever you do, don't feel guilty about them. It's not like you're the sort to binge hundreds of grams of them! Just make sure you give yourself double points for those you don't have so you can doubly enjoy those that you do!

As you are doing the lifestyle things, it is unlikely that is the problem and there is more likely something wrong with the processing at cellular level. If you need to improve things immediately then now might be the time to investigate artificial treatments.

I'm sure this is another case of GPs knowing very little nutrition and biochemistry and, as very few people do the right thing, the standard advice is to improve lifestyle as for 99% of people that is what is required. You are completely right and she's totally missed who YOU are!

Right, first things first....

You are great at your research (another thing to appreciate yourself for) and so find out for yourself more about cholesterol. I'm really sorry that I can't help you more but I realise I have a big hole in my knowledge and am so up against it myself at the moment I can't spare any time for research to help you.

However I do know that your body makes cholesterol - all animal cells do - in the processes that make vitamin D.

It sounds like the process in your body that makes vit D from cholesterol is broken - maybe because you HAVE to cover up so much to avoid the light in your eyes.

OK - so can you find a way round this? Question? Do sunbeds give enough UV light to convert cholesterol to vit D?? If so book yourself tanning sessions and wrap your head up to exclude the light.

If you can somehow reawaken the process, it will use up your cholesterol - and give you vit D!

I don't know much about stations and plant stanols but it would be worth you doing a bit of research into them as they may help you in this case, particularly in the short term.

There are more ways of doing things so focus your energy on thinking positively and tackling this as a new challenge that you know you can do.

Also, if you are inevitably short of vit D, are there better ways of getting your vit D3 and K2 perhaps? I was using the spray as it works and is nice to use but have found Your Supplements do some tablets that are higher dose and cheaper.

To find the right information, you will need to look up cholesterol from a scientific and bio chemistry direction, not from a medical perspective! Bonkers I know - and scary too - but it's because most people's problems are because they abuse their bodies and not because there's anything actually wrong with them. We we present with problems due to broken pathways it is beyond the remit usually required by GPs. Mine freely admits this and you can understand where they are coming from.

That's why it's so galling when people are "do goodery" about your problems and you just want to shout "No! Something is actually WRONG with my body, not my actions!"

I don't think this applies to you as I do think you have to be careful to limit your output to what nutrients you can get into yourself but... know walking is the best exercise but if exercise is the key, could you use an exercise bike in a completely dark room instead, at least in part - I know you'll WANT to get out for your walks anyway.

Think of your body as a collection of all sorts of different cells that each need the right balance of nutrients to work properly, to make and under the direction of hormones, enzymes and other complex bio-chemicals and compounds.

I must run (creep slowly - migraine, again!) now but I hope something here has helped a bit!

Head up (eyes covered) and go for it! XX

deniseinmilden profile image
deniseinmilden in reply to deniseinmilden

As you know, red meat is a vital part of our diet and provides disproportionately good nutrition so make sure you do get as much as you can (even if it's not much) of lean cuts. If you can get hold of partridge it is also very nutrient dense but lean.

I rarely eat chicken these days, despite it being my favourite, because it is relatively low nutrient density.

I think your problem is more likely to be due to your body's own manufacture vs breakdown balance than your diet so don't mess up other things for the sake of cholesterol, as important as it is.

Nackapan profile image
Nackapan in reply to deniseinmilden

Thank you. Lots to think about. I wad wondering about the vit D connection. Thinking that it might be clogging the arteries??

Very interesting what touvr said.

Brains need cholesterol and I think some if it is genetic.

My dad died suddenly of a stroke .

Hr was always talking about cholesterol and eating lots of roughage ect. He was fit until he dropped. Hed cycled round the night before. He dropped something and his hand slipped. Mustve moved a clot. He was on no medication and repairing a garage roof thd week before!

I'm certainly going to treat this as yet another challenge

More positive today

Thank you for your response.

Slow to reply as yesterday wiped out with a nasty headache.

Been for a walk today

Sorting out ways to eat.

Vicious circles at times. I can walk fast but not far or for long. I had been building this up. The raised ferritin has helped this

You are right at the Gps lack of regard to who i am and how hard I'm trying to get functioning.

She didnt even mention statins but giving me 6 months to another blood test.

I requested this one !!

Have been keeping an eye on cholesterol by yearly blood tests for years.

I wi still eat red meat but less of it . I dud at one point eat alot of lover in thd hope I would absorb some b12

Thank you.

Take care

.

deniseinmilden profile image
deniseinmilden in reply to Nackapan

Thank you taking the time to reply to me so fully.

Try looking up cholesterol on Wikipedia and then following the links from there as a start if you can bear to read the screens.

Good luck with everything! X

Nackapan profile image
Nackapan in reply to deniseinmilden

Thank you. Hope you getting on okay too .

Frogit profile image
Frogit

Hi Nackapan, Nothing new to add to the advice and support already written, I wanted to say to you, refuse to be judged by someone who does not know you and has no concept of your symptoms. It is the medical system that is broken not you. When a GP has no time to go through your note an see the effects of what they have done already, they cannot chart any sane way forward. My GI doc talks about hearing hoof beats but not jumping to the conclusion that zebras are coming over the hill. He looks for the horses first. Iknow they have to rule out all the horses before they get to the zebras but it would help if they actually believed in zebras. perhaps we B12 problem people are even more rare than Zebras, maybe we are the quaggas, Why are there no B12 deficiency/ PA specialists who can rewrite the stupid rules and make space for quaggas and zebras instead of insisting everyone is a horse (or in my case a Shetland pony)

And in cold, dark, winter weather is there anything better than being in bed with a cup of tea and a biscuit?

Nackapan profile image
Nackapan in reply to Frogit

How right you are.I enjoyed reading that .

Thank you

deniseinmilden profile image
deniseinmilden in reply to Frogit

Superbly put!

(And it extra appeals to me with a love of euines! I had a Shetland pony for 33 years and she was my life as well as the love of my life!)

Showgem profile image
Showgem

I am having a similar experience to you Nackapan. I was given a cholesterol test a couple of months ago, the first for a few years now and the first that has ever been high. I was offered statins which I refused and that was it.

I had also increased the red meat in my diet as my ferritin levels had been low for a long time. I have also been taking vit d 3 together with k2 and magnesium supplements as my vit d was deficient.

At the moment I am unable to exercise more as I care for my parents who haven't been well and I just don't have the time and energy.

I'm unsure what to do but for now I shall just have to put it to one side and think about it later, I can't worry about anything else.

I have written the letter to my GP asking him not to reduce my b12 to 3 monthly and am going to drop it off at the surgery later. Thank you all you lovely people who advised me where to find the relevant information to include in my letter xx

Nackapan profile image
Nackapan in reply to Showgem

It's so difficult isnt it. Yoh sorry one thing and causes another!! I requested a blood test . Just as well.

Just made cottage pie half the lean beef mince 100g padded out with grated carrot . No milk or fat in the homegrown potato mash. For two.

I'm doing this and cutting out biscuits .....boring

I also have a 91 yr mum who I struggle to help. Difficult. Gkad tih posted ad feeling totally fed up with it all.

Look at the ratio as that's the important part even I'd the blood figure is high.

Take care

Showgem profile image
Showgem in reply to Nackapan

Only the total was done, I eat sensibly so not too worried, just spreading the butter a little more thinly and trying to cut down on cheese as this is my weakness! I took my letter requesting more frequent injections to the surgery to find my GP is on annual leave. I have my own supplies though.

Nackapan profile image
Nackapan in reply to Showgem

Definitely get the 'lipid'i think called ratio of the 2 sorts . The ratio number is important.

Yes I like cheese. I uses it as protein on veggie meals .

I havent had cheese and biscuits for some time .

Portion size.

I think we all eat a bit more in winter and also if ill also if too fatigued or restricted to get out more.

Food should be enjoyed

Just need to have food to match activity I suppose. Yawn.....

Bellabab profile image
Bellabab

If your cholesterol is within the normal range then I suspect you have no need to worry. I cannot understand why your GP would be concerned if your BMI is normal.

Nackapan profile image
Nackapan in reply to Bellabab

It's not within the normal range. The ratio is though?

Marz profile image
Marz in reply to Nackapan

Hi - I know we have chatted before and I have read through this thread and felt it worth mentioning a few points. Cholesterol is often raised with low thyroid - especially the T3. The NHS website mentions having the Thyroid correctly treated before taking a statin.

drmalcolmkendrick.org

The above Dr wrote - The Great Cholesterol Con - a great read. I have heard him speak at two conferences in the UK. Statin Nation - a video by him on You Tube could be helpful.

Zoe Harcombe has a website and covers the topic well.

People with raised cholesterol live longer. There was research on people dying in hospital - their cholesterol was low ...

Raised cholesterol has very little to do with food - so enjoy. How were your Tri-glycerides ?

in reply to Marz

Great post Marz I fully agree and really admire dr Kendrick definately worth looking him up on YouTube .I’m going to checkout Zoe Harcombe now.I’m also getting my ear chewed about high cholesterol but when they first said years ago my cholesterol was too high at 6 I had a scan done of my arteries in a london clinic and I had zero plaque.That’s something I may consider doing again to shut them up but not right now it’s not a priority for me plenty other stuff going on lol.

Nackapan profile image
Nackapan in reply to Marz

Thank you. I'm awaiting my results to be posted. I will look at the triglycerides. Know nothing about them. I will study the links in chunks.

I've read your brain really needs cholesterol so I'm not doing anything hasty at present. I'm hoping its s blip as have been eating differently to raise iron and was hoping to digest more b12 .

Cholesterol.

Another area to research. Its always been on the higher side when well hence yearly blood test I requested.

My diet has always been good. I dont omit anything.

I used to drink red wine . Now havent had a drop for over 2 years . Been too poorly to risk it.

Perhaps that helped !?? I do have pomegranate juice.

I think that's why it got me down as I've never concentrated so hard on my health to still trying to function better and reduce pain. Exercises I do regularly but calculated not random as I would like . I'm aiming to get further and ride my bike further than uo and down the road. My weight as never been a problem if anything was always slim. Put on weight after the menopause which stayed and okay. Then lost nearly a stone when bedbound and first started b12 treatment. Thats back on. The biggest swing in years

I've said to one of my daughters to get a full thyroid test done privately . Perhaps I should too.

I'm on no medication .Not taking statins and indeed they were not mentioned yet!

Decided against the serc. trial. I've had a shift in symptoms and dont want to cloud anything.

There are foods I can have less of easily. I've a strong will but I love my food. Comforting.

I dont want to lose the tiny bit more of strength I've got to walk and cook more!!

I think raising my ferritin over a year has helped me.

Again thank you for your input.

I hope you are as well as you can be.

Take care.

Marz profile image
Marz in reply to Nackapan

Good idea for you both to have full thyroid testing done. Special Offers with Medichecks on Thursdays with Thyroid UK. The NHS test does not give you enough information. Low thyroid and raised cholesterol is discussed on the TUK Forum on a regular basis. Your TSH and T4 could well be fine but it is the T3 that is the most important hormone and yet very rarely tested in the NHS. Low T3 = lowered metabolism affecting every cell in your body.

Raised tri-glycerides are often linked to sugars and not fat. Good fats are good for us and do not make us fat. As you know sugars can come from fruit and veg in a healthy diet ....

Nackapan profile image
Nackapan in reply to Marz

Okay thanks. Yes I'm well up on food and nutrition thats why I'm shocked.

Unless I'm just not able to do enough exercise.??

Sugar I'm okay on as my husband is diabetic so weigh carbs anyhow and used to alot less sugar. Thars why even in 'normal ' times we dont eat out as thers always hidden sugars as well as fats!! Fortunately we have an allotment with fruit trees as well.

I like sugar and always thrived on it eaten in the right way. but as juice has a high content have it like that.

I've never been overweight if anything I've been under or low side BMI . Used to work with thises awful centile charts.

That was part of my last job. Working with children and teenagers in school health. Healthy NHS campaigns. Working with families and good ways to cook ect .

Will have to find our where to get bloods done in these difficult times .

My Gp checks thyroid every blood test but like you say never T3 .

It's been on my mind for sometime it's getting the bloods taken. Same for daughter who lives in a different part of the country.

Interesting you say about discussions on the TUK forum about the possible links.

Thanks again for your input.

You take care

Marz profile image
Marz in reply to Nackapan

Have read many of your posts so know you eat well ! - your allotment sounds amazing !

Raised cholesterol has very little to do with food. It is made in the liver for a reason and is transported in and out - needed in all cells and is the pre-cursor to many hormones. When you read about good and bad cholesterol - HDL/LDL - I am afraid it was something made up by the Pharma media for the masses ! Cholesterol is a chemical so cannot be both good and bad ! One of the myths around cholesterol - so do look at some of the videos by Dr Dr Malcolm Kendrick if you don't have time to read his book or Blogs.

There is a connection between raised homocysteine and cholesterol - I have read. Lowering Homocysteine can also help lower cholesterol - it happened to me. Homocysteine can be raised with B12 issues. Just a thought !

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