advice please : Hi everyone, not sure if you... - PMRGCAuk

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advice please

Numptybrain profile image
21 Replies

Hi everyone, not sure if you remember but I’m still getting terrible one sided temporal migraines and blurred vision but now I’ve been diagnosed with hypercholesterolemia not sure if I’ve spelt that correctly. I’ve always eaten healthy and been careful, especially with my mobility issues however I do exercise as often as possible with walking. I’m assuming this could be prednisone related or am I just guessing? Any help please as I know my respiratory was concerned about type 2 diabetes that’s why he did the tests.

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Numptybrain profile image
Numptybrain
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PMRpro profile image
PMRproAmbassador

Is that just high cholesterol or is it familial hypercholesterolaemia that hadn't been identified before because your cholesterol levels hadn't been checked?

Pred can increase your cholesterol levels - depends on the patient. So can other medications.

Not sure what help you think we are able to offer?

Numptybrain profile image
Numptybrain in reply to PMRpro

test results

This is the results
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Numptybrain

What about LDL reading? Overall level high, although ratio looks okay .

PS - you need to tap + to read all ranges - have copied from excel

Ranges
Numptybrain profile image
Numptybrain in reply to PMRpro

Do I need to worry about type 2 diabetes?

Please any advice I’m be so thankful as I am worried

Thank you

Wendy x

PMRpro profile image
PMRproAmbassador in reply to Numptybrain

It is the combination of diabetes and high cholesterol that increases risks of cardiovascular disease. It is something to be discussed with your GP since they will have a treatment plan drawn up to deal with it. It happens to most of us, with treatment - statins and diabetes control by diet or medication - the risks are reduced considerably. Cardiologists tend to want much lower levels than other doctors so it is difficult for us to comment on it, particularly since it isn't GCA or PMR which is what WE know about.

I appreciate what you didn't know didn't bother you and now you know they are concerned you will worry but there is no point and their knowing means something will be done. Worry when there is something to worry about.

Churg profile image
Churg

Others shoot me down, if what I say is incorrect. Your HDL cholesterol is raised which is the good cholesterol. Contrast that with the LDL cholesterol and you have a very good ratio. This is the figure upon which the risk is based. That is my understanding of it. This would mean you are not at increased risk. Discuss with an expert!

PMRpro profile image
PMRproAmbassador in reply to Churg

Think they are less reliant on the "good ratio" aspect now - and cardiologists seem to want a minus level of "bad" cholesterol!!!!

Raewynne profile image
Raewynne in reply to Churg

That's what I was told about mine.

Numptybrain profile image
Numptybrain

It’s so confusing, I’m not getting a call until 2 nd week in June so can’t be too important. Just more concerned about type 2 diabetes

Thanks anyway

Wendy xx

PMRpro profile image
PMRproAmbassador in reply to Numptybrain

You are unlikely to collapse in a heap all of a sudden - this is likely to be a longer term strategy which will also involve lifestyle changes in diet and exercise, especially diet. Koalajane knows all about that.

Raewynne profile image
Raewynne in reply to Numptybrain

Type 2 diabetes can be caused by prednisolone. Mine went up.I was even put on those stomach injections.It has stabilised now but I do watch my diet too as much as I am able.

Koalajane profile image
Koalajane

have you been tested for type 2 diabetes? You need a hba1c test for this. I have type 2 (most probably steroid induced) but by cutting carbs drastically I have kept it in remission for the last 6 years.

Numptybrain profile image
Numptybrain in reply to Koalajane

I am on a restricted diet due to having my gallbladder removed and having issues, I have diet milk shakes and chai and fruit for breakfast, the odd salad no potatoes but boiled egg and tuna or mackerel, I don’t eat bread I have no fat yogurt for a dessert occasionally with frozen fruit and a little sweetener or honey. I’ve always eaten carefully as I have flares of diverticulitis.

Thanks

Wendy xx

Koalajane profile image
Koalajane

okay, but as you seem concerned about type 2 diabetes I wondered if you had actually had the blood test to check for it.

Numptybrain profile image
Numptybrain in reply to Koalajane

I’m not sure what tests they did at the hospital to be fair

Koalajane profile image
Koalajane

if they had tested your bloods for diabetes I would hope they would tell you. It might be worth asking for a blood test at your surgery to check

cranberryt profile image
cranberryt

For diabetes, you need to have your fasting glucose and a1c checked. Your cholesterol numbers don’t tell you anything about your sugar levels.

Blearyeyed profile image
Blearyeyed

So have they definitely ruled out GCA and have you had your MRI yet? Looking at your questions I'll run through them.

Cholesterol

HyperCholesteroleimia, ( I have Familial HyperCholesteroleimia) Cholesterol does not appear that high, but you have a gallbladder problem ( I had that removed 10 years ago) that can be effected by higher cholesterol levels so they like you to keep LDL as low as possible to reduce the chance of a flare up in pain and eat virtually no fat , even the healthier ones whilst waiting for removal. At the moment you might want to cut out the oily fish but return to it after the op.

Gall bladder issues can cause a temporarily raised cholesterol and triglycerides level which returns to normal after surgery , although you do still need to remain on a low fat diet afterwards , even being sure to control the amount of good fats you eat as well.

Doctors prefer to keep peoples cholesterol lower than normal range if you have gall bladder issues or removal because FHC can be part of the cause. They also prefer you to have lower cholesterol with respiratory or Migraine issues to stop narrowing blood vessels making your blood oxygen level low and symptoms worse.

Type2 Diabetes

You need to check if you've had a HbA1c blood test recently as Koala Jane mentioned.

Ring your surgery and ask them to check and tell you.

If you haven't had one you should ask to have it done.

At the moment you could have symptoms of Prediabetes and keeping to a diet low in processed sugars , fat and no artificial sweetener will help with your combination of health issues .

They may need to check your figure now then again three months after gall bladder surgery , because the gallbladder issue can cause temporary issues with blood sugar and B vitamins , Folate or iron deficiency which can clear up normally after the operation when bile flow is more normal.

A high fat , extremely low carb diet, keto or paleo is NOT appropriate with your health issues .

Even after gall bladder surgery, you will still need to be careful about how much fat you eat of any sort. You can be helped by a low fat , Mediterranean style Diet with moderate intake of low G.I , fibre rich carbohydrates , no processed foods or artificial sweetener, and keeping food with processed sugar to the occasional treat , Portion size is also important.

With you combination of health issues also check if your GP or the hospital has tested your Vitamin B12 , Folate , Iron and Vitamin D levels.

These can be affected by taking steroids or PPIs , but they can also be affected by your gall bladder problem because bile secretion can change the recycling process of your B vitamins.

Very low , borderline or deficient levels of B 12 and Folates can cause many different symptoms including Migraine, and worsening cardiac or respiratory symptoms ,they can also cause low Vitamin D and Anaemia even if you have a good diet, yet the tests are often overlooked .

These tests even if they are normal before gall bladder surgery need to be retested after your op , as well as checking your liver function because the tests can be affected by the gall bladder and appear higher or lower than normal.

Headaches

I have a full spectrum of Migraine Types as part of Chronic Migraine Syndrome, Hemicrania Continua and Cluster Headaches.

If they've ruled out GCA you are a perfect candidate with your current health history especially the respiratory problems, plus taking steroids for :

Migraine with Aura ( vision disturbance) this can feel very similar to GCA pain , I'd get them confused early on when I had GCA. Low oxygen levels , Physical Stress , Too much screen use and various medications, including steroids can make it worse.

If you head pain is constant and one sided it could be Hemicrania Continua. It usually doesn't go entirely when it begins until it is properly treated.

This is a headache type that often only responds to taking Indomethacin. Much like PMR responds to steroids. Low Oxygen levels can make it worse.

If the pain is low throughout the day but then hits you really hard a few times a day for about 15 mins to 2 hours with other symptoms like blurred vision , tinnitus , and sometimes odd ones like a runny nose and eye , jaw numbness , confusion you could have Cluster Headaches.

This can be helped with supplemental oxygen especially if your blood oxygen is low , although sometimes people with constant oxygen use can get them because of constant O2 use and the dehydration it causes. These usually come and go in flares over a few weeks or months and can be temporary as part of another illness or because of low B12 or B12 Deficiency.

Your MRI and a check with a Migraine Specialist or Neurology Consultant should help you work out which range of severe headaches you get and begin to trial you on medications that will help , there may be some options now that your GP could prescribe. It would be worth asking them about cluster headaches or chronic migraine relief.

Hopefully things will settle down more after your gall bladder op and you get your respiratory issue under control. Unfortunately severe migraine and breathing issues seem to get served up together like peas and carrots because oxygen levels play a big role in headaches. The steroids can sometimes improve them but sometimes make them worse,

Hope that helps , you must feel awful at the moment , I can remember it , take care and get as much eye rest as you can , try a warm damp compress on the affected side and try to keep to your breathing exercises, use your oxygen if you are on it and drink plenty of fluids to stop dehydration triggering more head pain , take care , Bee

Numptybrain profile image
Numptybrain in reply to Blearyeyed

Hi I had my gallbladder removed a few years ago and now have sphincter of oddi type 2 I’m currently suffering with left upper quadrant pain very similar to pancreatitis. I do take B12 folate and vitamin D supplements, doctors put me on them years ago. I have to be very careful what I eat before and after gallbladder removal.

Thanks for advice

Wendy

Blearyeyed profile image
Blearyeyed in reply to Numptybrain

Oh I thought you were still waiting for removal , but as you know the restricted diet and the pain or issues don't always go after removal , and you can still get the odd gall stone blocking your bile system , even if you don't have a gallbladder ......even though half the specialists or GPs don't realise this.I was checked for SO but I have chronic pancreatitis instead, probably because I have Familial HyperCholesteroleimia and higher blood cholesterol can bring it on even though I'm on a good diet and take statins and Ezetimibe.

You could try some plant sterols if you are post surgery each day to help with the cholesterol if you don't need statins.

I also have Pancreatic Enzyme Insufficiency, which has caused Functional Vitamin B12 Deficiency, recurring B12Anaemia and Folate Insufficiency. So I have to have B12 injections and Folate as an infusion.

I did find that low B12 was part of the cause for more frequent bouts of pancreatic pain , partly because it affects how well the bile system works , causes blood sugar spikes and reduces how well we remove cholesterol from the liver.

So, check if you've had the HbA1c blood test , but also get the B 12 , Folate and Liver Function tests done if you haven't had them in the last 3-6 months . They should be checked regularly for people on steroids , especially for people who've had a gall bladder removal or have liver or pancreas conditions.

Numptybrain profile image
Numptybrain in reply to Blearyeyed

Thank you, yes I have not had my LFT’s checked for a while but my gastroenterologist is ringing me on 29/5 so I’ll ask her.

Thanks

Wendy xx

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