Anyone with Raynauds?

[Zelda5]

On Tues. a new Endocrinologist that I saw for the first time said that I have Raynauds, but I don't think I do. I saw her to get my thyroid meds lined out. I told her the tips of my fingers and toes on occasion go numb ( not necessarily from the cold) and my feet is often cold and if my feet are cold then the rest of me gets cold, which is common for a lot of people, I think. Anyway, she looked at my hands and feet and felt for what I assume was my pulse in my feet. I've had a negative ANA in the past, with a normal ESR and a high C-RP. I do have an antibody associated with liver disease (AMA-M2) but was neg on liver bx for the disease that its associated with PBC and I have Hashimoto's thyroid. That's it as far as autoimmunity goes except for the Endometriosis, if that is indeed an autoimmune condition. However, my hands that I can ever recall have they ever turned blue or white like the pics I saw on the net when cold. She mentioned the capillaries in my hand or something but except for the severe dryness to me looks normal.

[Clutter]

Jean43, If your fingers aren't changing colour I'd check out B12 as numbness and tingling in fingers and toes can be due to low B12. Ask for a B12 and folate test.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Zelda5 in reply to Clutter]

Hi Clutter,

My B12 was at 471 pg and I took your advice, ever since that previous post and started taking the lozenges and my folate was 11, and you thought that was good. I also still need an iron test. and I didn't know that low b12 would cause the numbness in the tips of my toes & fingers, but that doesn't surprise me. She did put me on the brand name Synthroid to lesson any sensitivities to fillers. I have been very on edge and felt like I was wound tightly. I had hoped she would cut the dosage, but she didn't and instead put me on Metoprolol to control pulse rate and BP and I'm to wean off the Amlodipene. My pulse was 105 when they took it during my appointment, but I'm pretty sure it was the Levothyroxine, but she said it shouldn't work that fast. I've been taking it since late Nov. and I told her that I felt the affects of taking the 100 mcg that first day, before the other Dr. cut it down to 50 mcg. She didn't think that could be from the Levo, although she said she believes that I was having those symptoms. The fact that she preferred the brand name, I liked and I hope the Metoprolol controls the heart rate. Interestingly, (and I hope I got this right) she said that I'm sensitive to something with the glands above the kidneys is doing and I'm in constant fight or flight and when the heart speeds up my brain perceives it as anxiety, which to some extent is true I get anxious when my pulse is already up and not the other way around. She also said that she wanted to test for hyperinsulinemia which is part of the metablic syndrome, I think. That made sense to me to check that, but the other diagnosis she gave me that affects the pulse rate was "Catecholaminergic Polymorphic Ventricular Tachycardia" in one office visit without any other testing. I don't know what to think about this Dr. and for some of that I'm skeptical. Have you heard of this condition? Any advice?

[Clutter in reply to Zelda5]

Jean43, I'd been off Levothyroxine for 3 months and had palpitations and shortness of breath within 24 hours of resuming it. You can reduce your dose yourself to see whether symptoms improve.

bhf.org.uk/heart-health/con...

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Zelda5 in reply to Clutter]

That's true, so far with the change of med's, I'm doing much better. Thanks for the link, and from reading that article and the one I read yesterday, Im even more convinced that I don't have it and she pulled that out of no where. I did read up on this Dr. on vitals.com where patients can leave commentary, and there were some that really loved her and 2-3 that said she wrongly diagnosed them with growth hormone deficiency and she had given them injections for it and they were still suffering from the effects it had on their bones. She also seemed to move around a lot, which also makes me wonder as to why. I probably shouldn't read so much into it and be always second guessing my Dr.s, but maybe it's just my suspicious mind..lol

[SlowDragon Administrator]

Before I was diagnosed as having Hashimoto's my fingers and toes often went white and lost circulation due to poor circulation/cold. It was often very difficult to get blood flowing back again.

I never get this now. 😃

Was also always very difficult to get blood drawn for blood tests - this is also no longer a problem

[Zelda5 in reply to SlowDragon]

Hi SlowDragon,

That's very interesting! I'm so hard to get blood from, they (phlebotomist's) always tell me that my veins roll or that they're deep and sometimes they blow. The less experienced ones usually have to go find their best phlebotomist to get my blood. Sometimes, I look like a pin cushion by the time their done and bruise easier than used too, also. So, I'm guessing the fact that your Hashi's is under control is when those symptoms subsided?

[hose1975]

I've got terrible Raynaud's, to the extent that even walking under a shady tree in the middle of summer can produce a vasoconstriction and leave my fingers (and, increasingly, palms) white for a good 15 minutes. It seems to be getting worse with age. The only time there's ever blueness is when I'm exercising.

But then I also have connective tissue disease and it may be related to that.

[bobsmydog]

Yes I have Raynauds but it's heaps better now I'm on optimal thyroid meds.: it happens rarely now.

Finger tips turned white and numb with even the slightest chill in the air - it used to happen indoors with the heating on if the weather was a bit nippy! Sometimes turned bluish then when they began to come back to normal.

Tested positive to ANA but nothing else. I also have small round white pigment-loss patches on arms and legs.

[Hidden]

I have Raynauds and have had it for some years. I didn't know there was a connection to Thyroid, but reading these comments makes me wonder. I don't think I am adequately medicated but as we know our doctors say we are in range. I have to wear sheepskin mittens as they work better than ordinary gloves, I can even get it whilst in my home which is very warm. I sympathise with anyone suffering as it is very painful as well as disabling ( can't feel things when they are numb). There is medication which I hear works but it can cause side effects so I have opted not to take it.

[Zelda5]

Thanks everyone for your responses! I learned something new and it's better coming from people who already have it, than trying to figure it all out by what I read on the net!

[Raggedyann]

I have raynauds phenomenon. In the beginning it started out slow for me cold fingers, cold feet and cold nose. Now when I get near the refrigerator section in the grocery store my fingers go white all the way down to the palm. I have worn leather clothes and they still don't get warm. I am planning on ordering special gloves so my body doesn't feel the need to attack itself. I have to see a specialist later in the month to make sure I don't have scluderma. Not everyone who has raynauds gets it but it's possible. Have proactively changed my diet to paleo. It's helped some.