Hello everybody. This is my 3rd forum.My other ... - Thyroid UK

Thyroid UK

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Hello everybody. This is my 3rd forum.My other two are Atril fibrillation ans Restless Leg syndrome.

7 Replies

Recently I've noticed more info re the connection between thyroid probs and rls. I have been on Thyroid meds since 1984 after my thyroid function was negatively affected by radiation for larynx cancer. I am fine but want to know more about new thinking re how thyroid probs affect other med conditions (a-fib and restless legs). I was diagnosed with atrial fibrillation in 2011 and it was agreed that incorrect thyroid dosages over time contributed to my a-fib. In the last several years my PCP/GP (Primary Care Physiclan in the US) has been managing my hypothyroidism. While I trust her with most aspects of my care, I feel she is cavalier re lab values-just thinks normal-wherever the number is in the normal range is fine and is sjow to note trends re values drifting high or low and is very slow to make changes- sort of a 'let's wait and see' approach. I'm a retired nurse and am very much involved in my care. I consider I am 50% of my treatment team. Would like to have a good source of up to date info and other poster's resources to be more on top of my care. So here I am. I'm especially interested right now in how tightening up my thyroid care may help my rls pain. Thanks in advance for input. I also have my settings to allow all my posts (on all 3 forums) to be seen by all. I really believe there are important connections between these 3 conditions. Glad to be here. irina1975

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7 Replies
Marz profile image
Marz

Hi - there is a connection between thyroid and AF - I have read. How are your FT3 levels ? Do you have results to share ?

RLS can be linked to Low iron. Have you had the following tested - B12 - Folate - Ferritin - VitD. AF can also be affected by low Iron. Do you take Magnesium ? - it seems we are all low.

What dose are you on ?

Have you found the Search Box here - there will be loads of posts about RLS & AF. 😊

in reply to Marz

Hi, I am so 'proactive' which seems to be appreciated by all my docs except my prinary (PCP) . I think she dreads seeing me arrive with my 'index cards.' A short(?) hx. Was diagnosed with afib in 2011. Had sleep study/got cpap and the opinion was that thyroid dose was too high and contributed to afib.After receiving the radiation in 1984, the endocrinologist put me in 300mcg (yes 300) saying that a high dose of thyroid would prevent thyroid cancer down the road. This seemed to be 1984 thinking. Well, I never got thyroid cancer but being on this dose for years has created many (I believe) thyroid-related probs not the least of which is afib (now well -managed). I had to 'beg for a ferritin level after recent rls dx and in 3 months went from 62 to 48. My primary as I said in my post believes if a lab value is in the normal window it isn't a problem I've also tried to get B 12/ Folate/ Vit D etc tested and met with resistance. I also asked for a RX to give myself B 12 shots as I was vegan for several years which helped me lose weight and get off quite a few meds-incl insulin. Her comment on that was if your level is normal the shots won't help. You get the drift. So I'm taking the ball in my own hands, I have an appt in April with a new neurology group which a member of my rls forum has already seen.His opinion is that this is a group that 'gets rls'. So looking forward to getting some real help. My cardiac team are wonderful and my main Electrophysiologist is brilliant, has an open mind, and thinks outside the box. I'm losing confidence in my PCP. I inherited her about 3 years ago when my old doc retired. Didn;t mean to ramble but feel I'm on the right track, I'm an old O.R nurse who is not intimidated and have no problem going to bat for myself LOL. Will stop and give your eyes a rest. Take care irina1975

in reply to

Me again.I do take magnesium and use homemade magnesium 'oil'. My afib is very well-controlled. Had an AV node ablation and pacemaker insertion in 2016. Went off all meds and actuallyAF is my least problematic condition now. In Jan I had (my choice) a Watchman Procedure whtch has enabled me to me slowly be taken off anticoagulants.I was on coumadin and self tested and self managed. I am happy to be almost off as I believe the coumadin has lowered my ferritin and possibly added to my rls pain. I only have about 2 more weeks of coumadin. Some docs buy this theory-somedon't. My EP believes coumadin is a harsh drug and tho many need it more info is becoming available re long term side effects. I am happy to leave it behind.

Marz profile image
Marz in reply to

Check out the book on Amazon - Thyroid and Heart Failure. You can look inside on-line. I have a copy and it is full of research papers from around the world. T3/Liothyronine is the star of the show 😊

Off to take a yoga class now ....

fibrolinda profile image
fibrolinda

Have you got copies of your 'normal' blood tests... Including ranges 🙂 Lots of info on our 'parent' website, certainly worth a read. Any chance you can change your Pcp. thyroiduk.org/tuk/about_the...

in reply to fibrolinda

Yes. I have access to all my med records online and cal pull up anytime. As all my docs are in the same hospital online system they also can check what's going on with me regardless of specialty. One thing I do is keep track of lab results over time as I think it's important to know when even normal values are drifting up or down. For me, it helps catch problems early-hopefully for early intervention- instead of missing problems til they're more serious. Good idea re PCP chage. I am keeping my eyes peeled but as she has value in many ways I'm considering changing my thyroid care to an endocrinologist. Also she will 'do what I suggest' if I push enough' .I often do and bring my documentation, but it is tiring and creates for unecessary medical skirmishes. But it is an option.

mourneadventurer profile image
mourneadventurer

Have you checked for underlying stealth infections? The gold standard test is the GI map which picks up on the RNA of pathogens. Three previous 3 day. Stool tests over the past year missed crucial key players. I am completely asymptomatic other then an extremely challenging time with bradycardia, AF, restless legs twitching, eyes moving under eyelids, jaw clamped together after sleeping., ridged nails.

It goes without saying that freeT3 and free T4 have to be in range.

Reverse T3 identifies an inadequate T4/3; conversion that could possibly be blocked by an underlying stealth infection and or vitamin and mineral deficiencies caused by those infections. Electrolyte replacement as well as magnesium is crucial.

Thankfully I am reversing this.. A journey in progress as mentioned in my profile.

Best Wishes.

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