Anyone out there developed Raynaud's? - Thyroid UK

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Anyone out there developed Raynaud's?

pffft2017 profile image
25 Replies

Finally found a half-decent GP who's sending me for an assessment for Raynaud's after suffering blue/purple hands for the past two winters. Not sure if it's down to hypothyroidism or my previous smoking habits.

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pffft2017 profile image
pffft2017
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25 Replies
Marz profile image
Marz

Low T3 ? - possibly ....

pffft2017 profile image
pffft2017 in reply to Marz

I'm taking liothyronine exclusively, the levels are out of the upper range and last TSH was 0.84. Thanks for the suggestion.

Mamapea1 profile image
Mamapea1

Yes ~ one of many labels I acquired on my journey with thyroxine! I have indeed suffered with all the symptoms of Raynauds ~ I think possibly for my whole life! I can always remember my dad saying "cold hands warm heart" whenever he took my hand as a child, so I wasn't surprised when I was diagnosed with it in addition to FM/CFS/ME etc.,😕

HOWEVER, last Saturday I swallowed 1/4 of a T3 tablet (for the first time in my life), and the first thing I noticed was an internal warmth that spread upwards from my middle, down my arms and directly into my HANDS! They have not had that horrible coldness since ~ hopefully the first of many T3 'miracles' to come my way🙏.

This is just my experience, and I have'nt read your profile, but just wanted to share as I'm still buzzing about having hands that feel 'normal'😊 Hope it helps👍. x

okaykay profile image
okaykay

I have Hashimoto’s thyroiditis with nodules and was diagnosed with Raynaud’s last August. My toes were blue black in the summer time. My fingers also turn that shade and it affects the tip of my nose. My Doc ordered an arterial blood flow study on my feet and I have absolutely no blood circulation in my toes. It’s miserable! Im sorry you are experiencing this. I buy stick on foot warmers that are activated by air. My heating blanket is my best friend! Hopefully, you get some answers. God Bless you!

pffft2017 profile image
pffft2017 in reply to okaykay

Thanks for your reply and sympathy. Pleased to hear you've discovered the hypothyroid Holy Grail and it's warmed the cockles of your heart. The mystery is I'm taking T3 exclusively and have done for at least 10 years, it may be related to other circulation problems in my legs for eg; I have an assessment for peripheral vascular disease too. Fingers crossed it's thyroid related. Thank you, may your God bless you too.

pffft2017 profile image
pffft2017 in reply to okaykay

Just read an interesting article a friend gave me that was published in the Daily Mail 11th July 2017 about endovascular revascularisation, like an angioplasty for the leg arteries where they use a balloon to open up the problematic artery and insert a stent. The guy had it under a local and went home the next day. Might be useful in getting your little piggies back to market instead of staying home, and mine too one day.

okaykay profile image
okaykay in reply to pffft2017

Thank you! Definitely worth looking into. Take care of you!

SlowDragon profile image
SlowDragonAdministrator

Under medicated for hypothyroidism can be cause. Especially if you Hashimoto's

Getting vitamins optimal. Vitamin D, folate, ferritin and B12

Cutting out absolutely ALL soya including soya lecithin

Look at gluten too if Hashimoto's

DIO2 gene test perhaps

Test for Low FT3

pffft2017 profile image
pffft2017 in reply to SlowDragon

Thanks for the advice. Last TSH was 0.84 in November, the T3 wasn't tested but it's usually out of the upper range, maximum dose of lio @ 60 mcg per day. Hoping the circulation problems are thyroid and not smoking related. Wish I'd given up sooner. One thing I noted is BP was low for my age 117/70 usually a sign of underactive thyroid and cholesterol slightly high @ 5.3 despite a healthy diet and reasonable amount of exercise, both thyroid influenced. I shall ask them to investigate your other suggestions but it's a bit like banging my head against a wall, as you'll probably know. Keep up the good work!

My nails turn white and numb. Normally starts off with one finger then they all go. Takes s while to return to normal and blooming sore burning sensation with it. Just awful. Stress & cold weather can set it off. Poor circulation I'm told that's what causes it.

ShootingStars profile image
ShootingStars in reply to

Have you been tested for Hashimoto's?

pffft2017 profile image
pffft2017 in reply to ShootingStars

Thanks for the reply. Not that I'm aware of, they wouldn't tell me if they had. It's a battle to even get my Vit D done.

in reply to ShootingStars

Nope

pffft2017 profile image
pffft2017 in reply to

Thanks for your reply. Funny thing is that my fingers aren't affected as much as my hands which immediately turn blue/purple if I wash them in cold water . I don't have the white fingers associated with Raynaud's but the back of my hands are always red and mottled.

Sounds like you definitely have Raynaud's, sorry to hear that.

in reply to pffft2017

Thanks, hope you get yours sorted

ShootingStars profile image
ShootingStars

Raynaud's is associated with autoimmune diseases. Do you have Hashimoto's or some other autoimmune disease that you are aware of? What are your levels of thyroid antibodies, TPOab and TGab?

pffft2017 profile image
pffft2017 in reply to ShootingStars

Thanks for the reply. I shall have to try and find out if my antibodies were checked. I do suffer from psorasis which is an auto immune disorder and which the hypothyroidism originally exacerbated.

Gcart profile image
Gcart

I had it badly , now almost disappeared with thyroid meds .

Never put 2and2 together before

pffft2017 profile image
pffft2017 in reply to Gcart

Pleased to hear it. I never realised how many underactive thyroid related conditions there are. When my GP first gave me the diagnosis he said " Good news, you'll get free presciptions! " Pffft!

Gcart profile image
Gcart in reply to pffft2017

Little do they know 🤣 😡

penny profile image
penny

I think that there is a link with low Vit D too.

pffft2017 profile image
pffft2017

Thanks, I'll have to get a test and some sunshine.

SlowDragon profile image
SlowDragonAdministrator in reply to pffft2017

If you are not on strictly gluten free diet then you need to try it, at least 3-6 months. If it helps stick on it

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Going strictly gluten free may help gut repair and you may be able to reduce dose

You are on very high T3. It doesn't necessarily give hyper type symptoms when over treated. I felt more tired and hypo when on too high a level of T3

Have you considered reintroducing some T4?

pffft2017 profile image
pffft2017 in reply to SlowDragon

Many thanks for your detailed reply and links. I wish I did have low stomach acid, I suffer from GORD and developed Barrett's too. I did ask for a coeliac test about 10 years ago and the doc laughed at me, but I doubt I'd have the resolve to go gluten free for that length of time. The FT4 was tested and the thyroid has packed up altogether. I've often accidentally overdosed myself on T3 and always get palpitations and the shakes as a warning. I couldn't bring myself to go back on synthetic T4, I have nothing good to say about the stuff, I'd still be running my business now if I hadn't been forced to take Levothyroxine for 2 years but thanks for the suggestion.

okaykay profile image
okaykay

Thank you! Definitely worth looking into. Take care of you!

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