Severe joint pain: blood work

Lemminkäinen

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Hi all,

Here's a blood test of mine in attached file. Could you interpret it in terms of what might be causing severe whole body chronic joint pain? Doc thinks it might be Ehlers-Danlos and therefore not very visible on blood tests. Sorry for French units. Other information I have:

Perfect right knee MRI
Bad (heavy chondropathy) left knee MRI
Diet: mostly Peat but some sourdough wheat and red wine
Male Caucasian 32 yo
184 cm 75 kg
Waist size 75 cm
TSH: 0.923 mUI/L (range: 0.350 - 4.940)
Free T4: 11.6 pmol/L (range: 10.1 - 17.9)
Calcium: 9.4 mg/dL (range 8.4 - 10.5)
Phosphorus: 2.4 mg/dL (range 2.4 - 4.4)
Uric acid: 6.7 mg/dL (range 2.5 - 7.5)
Normal GFR, urea, creatinine
25 OHD: 23.5 ng/mL (range 30-100)
Negative ANCA
Negative borrelia
Negative rheumatoid factor

Can you also appreciate how low I've crushed that linoleic acid on erythrocyte fatty acids tests? :D

Thank you everyone. :)
 

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youngsinatra

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Whenever I hear joint pain I think of iron overload.

Your ferritin is really really high, so I‘d start blood donation ASAP if I would be you.

I would also measure copper status and ceruloplasmin to see if your iron-management systems are running well.

Do you eat copper-rich foods like beef liver, oysters, shiitake mushrooms?
 
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Lemminkäinen

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Thanks. :) I do eat copper rich foods a lot. I have beef liver twice a week. You can see my blood copper (in French "cuivre") is whithin range although I don't have ceruloplasmin. Is iron that much of a concern? All my liver tests are great, I have basically zero symptom of iron overload besides joint pain, ferritin is more likely to be elevated because of wine intake, and transferrin saturation is <45%. Conventional medicine considers iron not a problem if transferrin saturation is below 45. But yeah they may be wrong. :D I'll probably start some blood donation anyway to optimize. However, I don't think my iron is that important for my symptoms.
 

youngsinatra

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Well, maybe I've become too iron-phobic :D

Do you consume any n-3 fatty acids? (how dare I to ask this on this forum) I personally feel a lot better with small amounts of them in my diet, in terms of having less joint pains.
 
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Lemminkäinen

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I consume a tiny bit, since I do mussels, oysters, whelks, shrimps, tuna, cod and pollock from time to time. You can see all my erythrocyte fatty acids details in the .pdf blood work.
 
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Lemminkäinen

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How are you doing Lemmin?
Sorry for late answer. Thanks for asking. Symptoms are sloooowly improving, but many of my health questions are still mysteries. I feel like strength training is the thing that is helping me most. I'm still not sure about that Ehlers-Danlos diagnosis since the local Ehlers-Danlos specialist is overbooked until 2023. I would love to hear more ideas from Peatarian people about my blood works. Some things are still intriguing me, like glutathione peroxidase and superoxide dismutase too high... Don't be shy about throwing random ideas guys!
 

vetiver

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Sorry for late answer. Thanks for asking. Symptoms are sloooowly improving, but many of my health questions are still mysteries. I feel like strength training is the thing that is helping me most. I'm still not sure about that Ehlers-Danlos diagnosis since the local Ehlers-Danlos specialist is overbooked until 2023. I would love to hear more ideas from Peatarian people about my blood works. Some things are still intriguing me, like glutathione peroxidase and superoxide dismutase too high... Don't be shy about throwing random ideas guys!
Hey, I’m curious how you’re doing now? The high superoxide dismutase is v interesting to me, I took a SOD supplement and now I’m having horrible joint pain and other symptoms that won’t go away.
 
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Lemminkäinen

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Hi guys!

Here's an update. Docs are now very sure that it's a hypermobile type Ehlers-Danlos syndrome. The range of motion in knees keeps improving, and the knees MRI have been improving a lot too, which is rare, but the problem is that the pain remains ridiculously high to the point of not being able to move in the afternoon. That's kind of a typical Ehlers-Danlos thing. About SOD, I didn't investigate more, but I assume it remains high, but that doesn't have much clinical implication. I've been eating large amounts of collagen and have been doing moderate daily exercises for years now, maybe that explains the current MRIs looking good, but it sucks to still feel severe pain. Possibly complex regional pain syndrome.

Have a nice day all. :)
 
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Hi guys!

Here's an update. Docs are now very sure that it's a hypermobile type Ehlers-Danlos syndrome. The range of motion in knees keeps improving, and the knees MRI have been improving a lot too, which is rare, but the problem is that the pain remains ridiculously high to the point of not being able to move in the afternoon. That's kind of a typical Ehlers-Danlos thing. About SOD, I didn't investigate more, but I assume it remains high, but that doesn't have much clinical implication. I've been eating large amounts of collagen and have been doing moderate daily exercises for years now, maybe that explains the current MRIs looking good, but it sucks to still feel severe pain. Possibly complex regional pain syndrome.

Have a nice day all. :)
Thanks for the update Lemmin. Good to hear you are doing somewhat better. I think you should take things a step further and eliminate grains, especially wheat, and see what happens. They are well “tolerated” for some people, but they are infamous for exacerbating pain issues…

“Gluten can cause inflammation in the body which can cause pain or other complications when you have EDS.”


“Most recently, in 2021, a case control report looked at people with all types of EDS, and found that Celiac disease was one of the most common GI conditions associated with EDS, and the association was much stronger than in controls–with a 5.47 odds ratio. The study did not break out EDS subtypes, however. [3]”

 
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