Irregular platelets in PD

[arty-fact]

I have just enrolled Laurie Mischley's online Parkinson's School, and to say I'm finding it enlightening is an understatement. Importantly, it's prompted me to have my B12 (and various other) blood levels tested again for the first time since 2017.

The bloods results show various low and high results that my GP was entirely unconcerned by, but a little research myself online today has fired me up with lots of concerns and a number of questions. I'm off to see a new naturopath in a couple of weeks, but I'd like to know if you guys have thoughts on any of the questions below (Please excuse me if I have missed seeing these on previous threads)

Here are just a few of my new questions...

- this sounds so simplistic, but given the inflammatory nature of PD and the anti-inflammatory effect of Aspirin and Ibuprofen, does anyone take these regularly/daily?

- Given high platelet count and variation in platelet size (both of which were indicated on my tests) are higher in PWP - any suggestions/ therapies for helping normalise these?

My current calcium is high - 2.72, and a few years ago I decided not to go on thyroid meds (I couldn't deal with the idea of yet more meds) after being diagnosed with slightly high TSH. Was I an idiot? Has anyone here with PD also been diagnosed with hyperparathyroidism? It has a whole series of symptoms that line up with Parkinson's symptoms to my (uneducated) eye...

- Has anyone heard about drinking bicarbonate of soda being good for Parkinson's? Once again, please excuse my complete ignorance, but is that the idea behind imbibing Methyl Blue?

Thanks in advance. It's just so incredible to me how little research there has been in some pretty simple things that could affect a lot of PWP. Of course I could just be missing a whole lot in my high blood results panic- if so, please forgive me!

[LindaP50]

My hubby has a high platelet count and was diagnosed years ago with essential thrombocythemia - which is a blood cancer disorder - and at risk for blood clots. Takes baby aspirin daily along with an RX for the thrombocythemia. Diagnosed with PD 17 years later. Maybe your results weren't high enough for a prescription but should be watched and tested again in a few months? verywellhealth.com/when-to-...

Ibuprofen can cause kidney issues. Years ago hubby took Ibuprofen for his osteoarthritis in his knees as prescribed by doctor. However, seems he was on too long and caused kidney issues.

[arty-fact in reply to LindaP50]

Thanks for sharing your husband’s experience. I hope you are both doing well. I’m going to start on the baby aspirin and medically investigate the results asap

[Kbowdoin in reply to LindaP50]

I also have been diagnosed with Essential Thrombocythemia (high platelets) and take a baby aspirin daily for it. I was diagnosed with PD 10 years later at age 45. And I have Hashimotos as well.

[arty-fact in reply to Kbowdoin]

There’s a strong correlation with Parkinson’s it seems. Interesting that both yourself and LindaP50’s husband had it diagnosed so long before the Parkinson’s. I hope you are doing well. Thanks for reaching out x

[LindaP50 in reply to Kbowdoin]

What RX are you taking? Hubby takes a chemo drug called Hydroxyurea and he gets blood work done every 3-4 months.

[arty-fact in reply to LindaP50]

I’m not taking anything at the moment - I just got the blood results back yesterday and my GP suggested I could have a bone density test if I really wanted to - that’s all.

I’m booked in to see a good naturopath next week and I feel like I’m ok to wait and to talk it through there. I’ll take the aspirin until then.

Hope I’m not being too Pollyanna about this!

[LindaP50 in reply to arty-fact]

Good plan. Talk to a naturopath. Hubby had a bone marrow test for the essential thrombocythemia.

[park_bear]

> I decided not to go on thyroid meds after being diagnosed with slightly high TSH. Was I an idiot?

No, you were smart. Basing thyroid therapy on TSH is wrong because it is quite variable. reference: pubmed.ncbi.nlm.nih.gov/266...

"the use of TSH, valuable though it is in many situations, should be scaled back to a supporting role that is more representative of its conditional interplay with peripheral thyroid hormones."

T3 and T4 are the relevant measures.

Hyperparathyroidism and calcium levels are an entirely different matter.

[arty-fact in reply to park_bear]

thanks park bear for taking the time to reply.

I’ve got thru the last 13 years since diagnosis with a few supplements, exercise and - yes - more drugs. This has shown me that I need to be much more proactive.

Back to have my T3 and T4 checked and a conversation with my GP.

Hope you are having a great day

[LAJ12345]

my cat was very sickly 10 years ago. He had been on science diet pet food. His bloods were always abnormal. Precancerous they said. I changed him to raw meat diet and over time his bloods came right and he is now 17 and hasn’t been sick since. The vet thought he would die.

I think diet might play a big part in this. Go through what you eat and switch to whole real food, no additives, lots of fruit, vege and nuts and seeds and see if over time the bloods improve.

[arty-fact in reply to LAJ12345]

I changed to the MIND diet last week- so I am right on your wavelength.

Thanks for your advice and all the best to both you and your fab cat!

[LAJ12345 in reply to arty-fact]

great, I think it certainly can’t hurt.

Lennie

[LindaP50 in reply to LAJ12345]

Your cute cat - "owning" the stairs!

[LAJ12345 in reply to LindaP50]

Yeah, best place to hijack anyone on the way past for a cuddle😊

[kaypeeoh in reply to LAJ12345]

I'm a veterinarian. Kidney disease and failure is common in cats. I'd always believed the carbs in cat food was involved. Other vets do as well. There are cat foods that don't have carbs but they're hard to find. So feeding a raw meat diet could help. But they tend to be high in phosphorous which can lead to bone disorders. Also raw diet could spread parasites. An old joke; In nature cats live on mice so mice are the best food for cats.

[LAJ12345 in reply to kaypeeoh]

The one I get is minced whole animals like wallaby, rabbit,salmon, chicken, plus some tripe and organ meat and lamb. He is doing really well on it given the first 7 years of his life on the science diet he was back and forth to the vet, always sick. Had to have treatment for thyroid, vomiting, straw like coat with bald patches. His brother got ataxia and went blind and died. Last straw was he was at the vet for 3 weeks on a drip and I got them to feed only raw meat and he slowly came right and improved over time. His coat now thick and soft. Kidney failure reversed. After a few months on the raw diet I thought it wouldn't hurt to add a bit of the pack of dried I still had to use it up and he started vomiting again so never again! I just watched the latest Laurie mischley utube clip and she confirmed how crucial diet is.

[Bolt_Upright in reply to LAJ12345]

Can you recommend a source for a raw meat diet for a cat? We had our cat eating mostly raw liver for years and then discovered that was a mistake as they get vitamin A toxicity (our cat had a seizure). He is on high quality balanced diet cat food but would still like to try something raw. Thanks.

[kaypeeoh in reply to Bolt_Upright]

Processed wild meats for predatory animals might work. I would use raw meat but add calcium because the cal/phos imbalance could lead to bone loss. Maybe research wild meat for zoo animals.

[LAJ12345 in reply to Bolt_Upright]

rawessentials.co.nz/?gclid=...

It is a New Zealand brand so I don’t know if they export. They have their own vets and recommend a diet plan.

He also has about a TB of this dried food as a treat and to clean his teeth just in case he is missing anything.

countdown.co.nz/shop/produc...

Our dog also eats the raw essentials too, plus he has 1 cup of this grain free dry food per day just in case he is missing anything. naturesgoodnesspetfood.co.nz/

He also has 1/2 c bone broth that I make with any bones from our food. (I freeze any bone from our food then every now and then I put all the bones and chicken frame into slow cooker with 1Tbs vinegar and boil for 24 hours.)

[LAJ12345 in reply to Bolt_Upright]

if the balanced food is science diet I would take him off it entirely. See above for brands I use.

[MBAnderson in reply to LAJ12345]

What do you think of The Farmers Dog? This is what Margaret eats. ($4.50/day)

thefarmersdog.com/howitwork...

[LAJ12345 in reply to MBAnderson]

that looks good. Real food at least. It’s cooked? Raw essentials is raw and doesn’t have veges. I’m not sure what is best. I guess dogs weren’t designed to eat cooked food, but then maybe humans weren’t either but we cook our food.

I’m sure either is better than science designed dried food.

[MBAnderson in reply to LAJ12345]

I think we should begin mixing in some raw food.

[LAJ12345 in reply to MBAnderson]

I think if you can find something that has minced bones and tripe eg whole small animal including stomach content it gives digestive enzymes and vitamins from plant material in gut

and occasional minced fish with bone in for omega3 or animal like opposum has omega 3 but our dog doesn't like it so he has wallaby.

[Bolt_Upright in reply to LAJ12345]

Thanks. He is not on Science Diet. For dry food he is getting "RACHAEL RAY® NUTRISH® REAL SALMON & BROWN RICE RECIPE"

Ingedients: Salmon, Ground Rice, Corn Gluten Meal, Fish Meal, Brown Rice, Poultry Fat (Preserved with Mixed Tocopherols), Brewers Dried Yeast, Dried Ground Peas, Pea Protein, Natural Flavor, Salmon Meal, Dried Plain Beet Pulp, Calcium Carbonate, Choline Chloride, Iron Oxide (color), Dried Carrots, Olive Oil, Taurine, Salt, Vitamin E Supplement, Zinc Sulfate, Ferrous Sulfate, Niacin, l-Ascorbyl-2-Polyphosphate (Source of Vitamin C), Manganese Sulfate, Copper Sulfate, Vitamin A Supplement, Thiamine Mononitrate, d-Calcium Pantothenate, Sodium Selenite, Riboflavin Supplement, Pyridoxine Hydrochloride (Source of Vitamin B6), Biotin, Menadione Sodium Bisulfite Complex (Source of Vitamin K Activity), Vitamin B12 Supplement, Folic Acid, Vitamin D3 Supplement, Cobalt Sulfate, Potassium Iodide.

Canned is "Merrick Grain Free Limited Ingredient Diet Real Duck Pate"

Ingredients: Deboned Duck, Water for Processing, Pea Protein, Natural Flavor, Calcium Carbonate, Organic Dried Alfalfa Meal, Sodium Phosphate, Guar Gum, Taurine, Potassium Chloride, Choline Chloride, Salt, Flaxseed Oil, Minerals (Zinc Amino Acid Complex, Iron Amino Acid Complex, Manganese Amino Acid Complex, Copper Amino Acid Complex, Potassium Iodide, Cobalt Glucoheptonate, Sodium Selenite), Yucca Schidigera Extract, Vitamins (Vitamin E Supplement, Vitamin B12 Supplement, d-Calcium Pantothenate, Vitamin A Supplement, Niacin, Vitamin D3 Supplement, Riboflavin Supplement, Pyridoxine Hydrochloride, Folic Acid, Biotin, Thiamine Mononitrate).

I just noticed that Corn Gluten Meal in the dry. May need to upgrade that.

This does not sound good: The Corn Gluten Meal Cover-Up truthaboutpetfood.com/the-c...

Or this: Corn Gluten Meal – More than a corn derivative foodregulationfacts.com/201...

Thanks for the info on the brands. I see they are NZ so I will look around and see what we have in the states. Thanks!

[Bolt_Upright in reply to Bolt_Upright]

Is Cat Food That Contains Corn Gluten Healthy for Cats? pets.thenest.com/gluten-int...

In a word, not really

[LAJ12345 in reply to Bolt_Upright]

I worry about US GMO grains. What if Laurie Mischleys App once filled in by people around the world finds living in US is a leading factor. Eg GM food, highly sweet foods etc. will be interesting.

NZ there aren’t any GM crops. Except imports.

[Bolt_Upright in reply to LAJ12345]

Yes, I just saw Mexico and Russia will not import American Corn or Soybeans. Monsanto is going to be the death of the planet.

[LAJ12345 in reply to Bolt_Upright]

also the cows are fed that grain so I wonder if milk from nz cows that eat grass is as bad as from gm eating cows. And the chicken and pork if they are fed the gm grains might be worse than organic chickens here that eat organic corn.

[rebtar in reply to LAJ12345]

Where do you get the minced cat food? Brand?

[LAJ12345 in reply to rebtar]

see above

[kaypeeoh in reply to rebtar]

"Where do you get the minced cat food..." Prolly not the answer you want but years ago my veterinary clinic treated injured birds of prey like owls and eagles. It was always a chore to find food for the birds. The best source was children in a car scanning for road-kill. As long at it wasn't too smelly Mom was wiling to put it in a garbage sack and deliver it to my clinic. Now and then I'd find a sack she'd left in the barn. One day I walked into the barn and a golden eagle was grasping something dead with one leg as she tore chunks of flesh off with her beak. .

The dead thing was a cat. So...minced cat food.

[MBAnderson in reply to kaypeeoh]

Our dog, Margaret, whose health is as important as our own has what we believe is arthritis in one of her back legs and/or hip.

The half 75 mg tablet of carprofen is not helping. What should we try?

Margaret

[LAJ12345 in reply to MBAnderson]

oh Margaret looks adorable.

Our dog Albie we were feeding with dried food as recommended by the vet when he was a puppy (stupidly after our experience with the cat) and he developed a limp that wouldn’t go away when he was about 3.

He went to a vet specialist and they were talking operations so I changed his diet to the raw essentials too plus I give him 1/2 c bone broth every day which I make in a slow cooker every month with Tb of vinegar and chicken carcass and any bones from our meals that I collect and freeze. I boil bones for 24 hours until they are crumbly then strain and freeze in portions. He has his bone broth when we have our morning coffee and loves it! He has one cup of this grain free dry food per day too just in case he is missing something in the raw food.

naturesgoodnesspetfood.co.nz/

Good news is his limp has gone. It took a few months to disappear. So no operation! Diet is critical. Maybe too many processed carbs for dogs causes them inflammation too.

Albie

[MBAnderson in reply to LAJ12345]

Thank you.

[kaypeeoh in reply to MBAnderson]

Perhaps 3/4 to a whole carprofen. Diet can help by reducing stress to the joints. I never had the time to learn about homemade diets but that couldn't hurt. When the carprofen quits working I would switch to adequan injections. It's basically chemical joint fluid and works well in many cases. You'd have to see a vet for anything more involved such as PRP injections. Or ozone suppositories. If the problem is in the stifle--knee--it often means a torn ACL. For medium to small dogs minor surgery called TightRope works well. Especially when coupled with adequan or ozone injection into the joint. When all else fails I'd inject long-acting steroids. It shortened the lives certainly but stopped pain better than anything else. I've retired and am not up on any recent changes in the vet world. There is a vet website called VIN: Veterinary Information Network. I used it often for 30 years. It's a paid professional service but I remember they had a secondary website for lay people with questions about animals. If the problem is hip dysplasia all of the above can be tried as well as acupuncture. Unfortunately you may have to spend some money having the vet take radiographs. I understand large cities often have MRI for animals.

Good luck,

kevin

[MBAnderson in reply to kaypeeoh]

Kevin,

Thank you, thank you.

Marc

[Edge999]

im also enrolled in the Parkinson’s school and truly believe Laurie is on to something. I switched to a plant based diet+ fish 3 weeks ago and the improvement is remarkable…

[arty-fact in reply to Edge999]

That is fantastic to hear. Can you please explain a little more about the type of improvement you are noticing?

[Edge999]

My 2 biggest problems have been tremor on left side and sleep disturbance. I measure both with my Apple Watch. My tremor has decreased from 8hrs per dsy to 4.1 hours according to strivepd app. My sleep disturbance has decreased from 1.5 hrs per night to 10 minutes according to apple watch. It feels that way too. I had other symptoms like fatigue, heavy sweating under stress, toilet issues. All gone or negligible….

I should mention i also am taking 0.5g curcumin tablets per day. Im praying this continues but it’s been great since i started 3 weeks ago.

[Fed1000 in reply to Edge999]

What kind of curcumin are you using?

[Edge999 in reply to Fed1000]

This one

Box package

[Fed1000 in reply to Edge999]

Thank you. Is this the product Dr. Mischley recommended?

[JCRO in reply to Fed1000]

I’ve been a patient of LKM for three years and I’ve been instructed to take this:

nutriessential.com/products...

[Fed1000 in reply to JCRO]

Thank you very much.

[Edge999 in reply to Fed1000]

this is what is recommended in a recent research document and was shown by her. She didn’t agree or disagree to it

Graphic

[Fed1000 in reply to Edge999]

Thank you very much.

[arty-fact]

I must get back on the Curcumin then also. Thanks again for your advice and I hope you just keep improving.

[GrandmaBug]

How do you measure tremors and sleep disturbances with your Apple Watch?

[Edge999 in reply to GrandmaBug]

apple watch has a built in sleep monitor. If you wear it while sleeping it tells you when you fall asleep/wake up, how much core, deep sleep anx rem sleep you get claiming to be 85% accurate and it looks to be pretty good to me. Strivepd is a new free app that measures tremor on the watch from sensors built in the watch. I wear the watch on my left hand where my tremor is.

[JayPwP]

Love your screen name.

[GrandmaBug]

Thank you so much. I do monitor my sleep with an Oura ring, HRV, too. I’ll sign up for the tremor monitor.

[chartist]

To answer your questions in order :

1. The use of ibuprofen and aspirin on a regular basis can cause gastrointestinal issues, even at low dose. So I would avoid it if possible.

2. Vitamin D can lower a high platelet count as discussed here and the majority of people have insufficient vitamin D levels :

pubmed.ncbi.nlm.nih.gov/345....

A relevant quote :

' Vitamin D treatment lowered platelet counts. This may be beneficial in medical conditions such as essential thrombocythemia in which platelet counts are higher than normal, and may help decrease platelet counts. '

3. Your calcium level is just above the reference range and things that may help move it back in range are boron, vitamin K2, Menaquinone 7, silica and magnesium glycinate or magnesium citrate.

4. I am not aware of baking soda being beneficial for PwP.

Art

[arty-fact in reply to chartist]

Thanks for replying Art, and for your insight and clarity. I checked the Vitamin D result (after being told it was fine) and it’s also right at the lower end of the range (52). So, after not needing it for years, that’s on the shopping list as well.

Any thoughts about the bloods also showing a low Anion Gap (6)?

[chartist in reply to arty-fact]

That is beyond my understanding because the anion gap(AG) being low is indicative of the blood pH being less acidic than normal and my understanding is that the blood pH is very tightly controlled by the body. So taking in a lot of high alkaline substances such as borax and sodium bicarbonate could potentially cause low AG, but possibly low albumin which would indicate kidney or liver issues. A low AG is also seen in multiple myeloma. Your doctor should have discussed the low result with you . He should have reordered the test to rule out an error in the original test. In any case it is not a good indication and should be dealt with as soon as possible.

The anion gap is actually measuring the difference between positively and negatively charged electrolytes in your blood.

Art

[arty-fact in reply to chartist]

I did read somewhere that a low Anion Gap result is often due to a lab error, but there are quite a few less than optimal results that I was told were okay

Yep I need to go back and talk to my GP about more testing. Thanks for making me realize I I shouldn’t put it off.

Maybe we should all start eating some raw meat like Albie, Margaret and the cool cats!

[chartist in reply to arty-fact]

A high calcium and or magnesium intake can also cause a low anion gap level.

Art

[Darty3]

I've had hyperparathyroidism and thought all the muscle pains and weakness was due to that. After the operation stooping and pain levels got a lot better.But was also hypothyroid which also caused weakness and loss of smell. All greatly improved by liothyronine.

Finally had occasional right-hand tremor joined by left leg after parathyroid op. Now diagnosed with PD.