Misdiagnosed

[Hashi-too]

Hello fellow LSN members I just wanted to share my experience hoping to help others in a similar situation. I have swelling in both ankles and lower legs (left nore than right ) Much worse in the summer ! After having a doppler-no vein probs etc- lymphoscintigraphy blood tests etc I was diagnosed ( or written off possibly ?) as having lymphedema stage 2 (no cancer or heridatary factors -yes I know that doesn't necessarily mean anything when it comes to lymphedema ) I accepted my diagnosis for some time before having a private lymphography which showed normal lymph function.

I still don't know why I have this swelling it may be to do with my thyroid problem ? Minor heart defect? Menopause? Who knows.

Don't give up on getting the correct diagnosis!

To be continued!

[Lynora]

When you were diagnosed with Hashimoto’s did they tell you that lower limb swelling can be a symptom?

[Hashi-too in reply to Lynora]

Yes hey did Lynora but even before diagnosis when I was at my worst I never had any swelling. My consultant used to check my ankles and legs at every follow up. I was diagnosed with hypothyroidism 20 years ago now the swelling started about 2 years ago.

[SmallBlueThing]

As I understand it, a low free T3 level increases capillary permeability and hence oedema. There's then a risk of stasis dermatitis and infections due to breaks in the skin.

This article doesn't state that ("normal" total -- not free -- T3 was measured) but mentions daytime weight gains in excess of 1.4kg (3lbs): ncbi.nlm.nih.gov/pubmed/668...

Free T3 is only rarely tested by NHS labs, despite GPs requesting it. There's also a near impossibility of now getting a prescription for T3 (liothyronine). So, it's doubly important to keep your legs elevated when possible (preferably with ankles above the level of your heart) and keep the skin in good condition. Compression garments can protect against physical trauma and insect bites, as well as controlling the oedema, of course.

[Hashi-too]

Interesting perhaps I need to see an endocrinologist for a review . The problem is finding a good one who actually listens to you and who is open minded with Erfa and Armour treatment!