Just wondering if I could ask some advice. Zero +pos RA about 3yrs also hypothyroidism started mxth 3 monthes ago in first few wks I was ecstatic no miracle just felt it was going to be ok eventually when it kicked in but anaemia came back big time this first started Jan and Ive being given nothing it does slowly creep up (107) ferritan ratio 2.92. My joints are getting worse but I've had loads of flares last couple months My stomach is killing me l have blocked bile ducts so eating is hard. Folic acid kills my stomach I have appointment 2nd Jan and not sure how to explain how tired lethargic ill I feel. I have these constant burns that drain me I boil up palpitations and its crippling. Should I ask for different drugs? Im also taking Sulph + Hydro and 250 thyroxine I don't think I can go on like this its sucking the life out of me
I've hit a huge wall: Just wondering if I could ask... - NRAS
I've hit a huge wall
Well you have explained to us how your feeling so why don't you show your dr your post so he has a good idea how you are feeling darling. Writing down everything will help when you see him. Happy new year darling.xxxx
You do sound miserable, poor thing. Have you had a good talk to your GP, as it could be complicated to work out what is causing each symptom. Anaemia can cause extreme tiredness and palpitations, as well as drug reactions causing similar symptoms. Perhaps worth booking a double appointment so you have time to discuss, and ask to be tested for vitamin levels too, especially vit D and B12 and folate. Some people also can't process the normal folic acid and need to be prescribed folate instead.
It would be better to try to push to get the underlying causes identified, work out the best drugs as just changing drugs might not be the answer.
In the near time, do eat well with lots of iron fish foods, and try to o get proper sleep.
Thank you Sylvi and helixhelix I will try to explain my problems on Tuesday I usually feel Ive only got one chance then review is usually 6-12 monthes My gp is a lovely gentle man but he stares at his screen then huffs and puffe saying Im not sure Christine I think your Rheumatologist will know more than me. Thank
Wishing everyone a good New Year.
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Don’t know if AARA ’s experience ( healthunlocked.com/nras/pos... ) might interest you, Mintychristine? 🤔
May be a fresh look at the huge wall 🧗♀️ so many of us hit again & again & again . . . 🤦♀️ 🤷♂️
Hoping 2018 is a far better New Year for you. 😌 🙏 🍀 🌺 🌞
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🎄 🔖 🎁 🎅 ❄️ ☃️ 🌨 2️⃣0️⃣1️⃣8️⃣ 🎉 🥂 🍾 😘 💋
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I’m sorry you are feeling so bad. I’ve been hypothyroid for over 20 years and have had many ups & downs. If you aren’t seeing an endocrinologist then start there. Most primary care physicians don’t check the T3 and T4 just the overall TSH. Also, synthroid is used by most doctors to treat while there are a lot of women who have gotten better on armour thyroid. There are other alternatives as well. Saying all that your thyroid can affect many things so I would start there.
You mentioned getting sick on folic acid. After I began taking it I was very tired, lethargic. I had to stop it and after a few days felt better.
Just my opinion but you should start a journal of what you eat, when you take meds & any changes. Be sure you are also keeping up with all your lab work. Drs. can be lifesavers but we also have to stay on top of things to know what to ask them about. It’s frustrating but when you spend 10 min w/your doc neither of you are looking at the full picture. If you don’t know the name Mary Shomon then google her. Great info there.
I too had palpitations but because I began the mxte & folic acid at the same time I assumed it was mxte was the culprit because of its many well documented side effects, but I had an interaction with folic acid and my blood pressure water pill. There is so much to watch out for.
Hope you are feeling better soon!
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Roxana ( healthunlocked.com/thyroidu... ) may be an additional useful resource too, brcdeer & Mintychristine? 🤔 🙏 🍀 🌺 🌞
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Thank you Kai Im going to read it every word Couple of monthes ago I bought the paelo diet book and followed the diet for a couple of weeks and now I recall I didn't burn up as much but fell of the wagon and mentioned to gp who told me it was too rigid snd said I wasn't eating well because the anaemia was the priority. I do burn more when I indulge in anything sweet, bread, red meat doesn't suit me I avoid white bread Yes I'm going try Thank you
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Yes, former Paleo-ers 🍖 ( healthunlocked.com/nras/pos... ) migrated to plant-based 🌿 & have better results, Mintychristine. 😳
[Gawd knows I can’t explain the ‘mechanics/ biochemistry of it’ ⚙️🛠 👩🔬 ⚗️ . . . . 🤯 🤷♀️🤦♂️ ]
Whatever works is ‘whatever works’. 😌
We just do what works best for us as individuals. ☺️
Yes, need to overcome ‘anaemia of chronic disease’ 😓 ( healthunlocked.com/cure-art... ). 👍👍
The ‘burning’ may be the internal ‘inflammation’ 🔥🔥 that your body is wrestling with 🤼♀️ any time you ingesting something ( 🍬 🍞 🍖 ) that triggers inflammatory 🔥 process/ cascade. 😧 😫
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Im over the moon with your replies I genuinely think there's some link with "leaky gut" I already tried the paelo diet and there was improvement Im busy reading the information and Im definitely going to try the journal etc I am getting worse and dont want to end up disabled and thats where its going I started with spine problems at 35 then thyroid at 40 menopause brought RA Ive the leaky gut anaemia Thanks I've got my reading!
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With remarkable determination & effort, andyswarbs got out of wheelchair ♿️ ( healthunlocked.com/nras/pos... )! 😯
Plenty of ‘realistic’ hope for us, Mintychristine. 🙏 🍀 🌺 🌞
Plenty.
We’ve a whole New Year ahead to improve even further! 🤗
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🎈2️⃣0️⃣1️⃣8️⃣ 🎉 🥂 🍾 😘 💋 🎆
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Thanks Kai Day 1🏇 Rheumatologist today enquired about my diet. No advice about anaemia Increased Mxt had ECG gp hasn't checked my thyroid in over yr despite me going frequently for bloods. I have to do this and dont think it will be too hard My stomach is always in knots tend to graze dont anjoy food anymore. Thanks for all the links You're great!
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If you or your rheum. are interested in exploring plant-based dietary/ lifestyle (d/l) options further, there’s sensible, reputable free 🆓 resources, Mintychristine. Keep researching & continuing to work hand-in-hand 🤝 with your medics.
If your medics are interested in exploring d/l with you, these shared references ( healthunlocked.com/nras/pos... , healthunlocked.com/cure-art.... ) might help.
There’s abundant freely available information from reputable physicians/ sources ( healthunlocked.com/nras/pos... ) for you 🙎♀️ & your medics 👩⚕️👨⚕️ to scrutinise 🕵️♀️ 🔎 .
Please keep those lovely spirits 👻👻 up, Mintychristine. 🙏 🍀 🌺 🌞
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Hi Kai Ive heard the links etc and read his stuff He's very good ambassador as I said Ive already got paelo books The porridge Ive already started eating it. Plant based bit unsure about where to start done well today fish + veg Do you think I should follow his detox? Ive already given my e-mail 1. Give up milk he said Im already on lacto+ cocunut milk. Im totally comitted ( only burnt up 3+. Thats good!! What would you do if you where me?
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I listened 👂 & learned 🤔 from podcasts 🎙 & websites 💻, Mintychristine. (If interested, consider taking notes 📝 if you think it’ll help.) Came to understand that it’s a "process" 1️⃣ ♻️ 2️⃣ ♻️ 3️⃣ ♻️ . . . And, came to understand the experience that each speaker 🗣 🗣 🗣 conveyed. (Listened to podcasts *multiple* times so information could ‘soak in 🧠 ’.) Continued working hand-in-hand 🤝 with rheum. 👩⚕️ & medics 👨⚕️ all along the way.
If this helps at all, it’s a loooong process, months/ years & you’re continually monitored 💉 🔬 📊 by your medics/ rheum.. Listening 👂 , learning 🤔 , reading 📖 , & tracking monitoring 📈📉 of dietary & lifestyle habits may serve you well. Paying attention to HOW your body responds to what you’re ingesting, your moving 💃🕺/ exercising 🏊♀️ , & thoughts 🙇♀️ / mindfulness 🧘♀️. Please be patient 🙏 , kind 😌 , & loving 💓 toward yourself. Surround yourself with caring, supportive loved ones 👨👩👧👦👨👩👦👦. Set realistic expectations 💁♀️ & don’t expect ‘overnight miracles’ 🌈 🧚♀️ 🧞♂️ ✨ .
You & your rheum. can assess if the early phase (cleanse) is acceptable/ suitable for you depending upon your current condition. (For example, folks who are underweight or feeling unwell may assess it’s best to by-pass the ‘cleanse’. Folks who are more hearty/ robust, the cleanse can be perfectly ‘safe’ & much appreciated.) [Oh, journalist Sumit Bose ( healthunlocked.com/cure-art... ) shows *actual*/ accurate early phase of process, if you’re trying to get a better understanding 😌 of it, Mintychristine.]
Before you dive into the ‘cleanse’, though, you might want to consider doing the very first phase (blood tests 💉 , measuring joint motion 📐📏 , rheum. consult, etc.). That is, if you wish to start from the *very* beginning of the process. If you want, listen to the sequence of podcasts 🔢 from the beginning where the phases are explained. That way you’ll learn & understand the sequence of phases & *why* you do certain things in a certain order 1️⃣ ➡️ 2️⃣ ➡️ 3️⃣ ➡️ . . . It’s all very logical 🧐 , sensible 🤔 , & well thought out 🤓 . Following the roadmap 🗺 laid out before us increases our probability of success 👍👍. As we listen & learn, things will begin to make more sense over time. 🤔💭 👍
It’s ‘experiential’ learning. It’s not something we master overnight 🌃🌇. It’s something we learn over time ⏳⌛️ through ‘trial & error’ experience — “doing". We make mistakes ❌ & have lapses — we ALL do. Just forgive yourself 😌 🙏 & move forward ➡️➡️ (not ‘dwelling’ in past errors). The more you do it, the better you get at it. 👍👌 Just keep learning 👩🏫 📚 as you go along. The many, many podcast guests — both patients 🤕 😷 & physicians 👩⚕️ 👨⚕️ have much wisdom 🦉😌 amongst them. Have found them to be the best educators 👨🏫 because they speak from experience. 👍👍 Each one may touch on a topic or specific example that directly relates to what you’re currently experiencing (or had experienced in the past), all of which helps us along the way. We just keep learning 👩🎓, listening 👂, reading 📚 , doing 🛠 & we gain a deeper understanding 😌 of what works well for us.
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It’s not something someone can ‘tell’ us 🗣 💬💬 .
It’s something we ‘discover’ 🕵️♀️ 🔎 from our own personal experience by DOING.
It ‘unfolds’ over time. ⏳⌛️
It’s work. 🛠
HARD work 😖🔨 at times.
But it’s doable. 🤗
And for those of us for whom the process works, we are fall-to-our-knees 🛐 grateful for every bit of improvement. 🙏 🍀 🌺 🌞
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Oh, if PP isn’t your ‘cup of tea’ ☕️ there’s plenty of other dietary/ lifestyle approaches to research 🕵️♀️ 🔎. Many share much in common; they overlap with each other. Podcast guests refer to those approaches (as well), so you’ll learn about them too. 👍👍
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Aside: Oh. . . improvements can be ‘cumulative’ over time.
If this is something you assess as being worthwhile/ doable for you during your research, this is merely something I’ve learned/ experienced recently.
As you’re steadily ‘chugging along’ 🚂🚂 in the process on track 🛤 for quite some time & think you’ve hit a plateau 🏜 (where little or no further progress is being made), you can find unexpected breakthroughs. 💥 😳
I’m guessing they’re the result of ‘cumulative’ 📶 , incremental 📶 , internal healing that quietly 🤫 goes on without our awareness? 🤔 🤷♂️ 🤷♀️
(I certainly can’t explain the medical 👩⚕️/ sciencey 👨🔬 bits. 🤦♀️ 🤦♂️ )
But, have merely found through persistent, boring, tedious effort 🛠 ⚒ ⚔️ — OVER TIME — more improvements start creeping in when not anticipating it. 😳 (It’s ‘weird’ 🤪 . I can’t explain it. 🤭 ) After doing this for quite some time, when you think your just at a nice, steady even keel, you can start feeling even better & noticing more improvements over time. Only when you look back in hindsight do you *realise* how truly/ deeply unwell you were (far, far worse than you realise when you’re ‘in the thick of it’ 😲 ) & how far you’ve come. And, even when you ‘think’ you’re better — much, much better — you don’t realise how much ‘further’ better you’re going to feel months/ years down the road. 😳 It’s a nice surprise. 😯 (I wasn’t expecting it after such a long time), & I couldn’t believe it. 😳 (Blew my mind. 🤯 ) [Now, forget I mentioned it, so if/when it happens to you, you can enjoy 😊 the surprise 🎉 .]
It sounds unbelievable 🤥 . And, if you try to explain any of it to someone it sounds even more "unbelievable" 🤥 to them. (You may receive looks of incredulity.) No matter! Your loved ones 👨👩👧👦👨👩👦👦 , your medics 👩⚕️👨⚕️, your co-workers . . . . WITNESS your improvements/ ‘progress’ & YOU experience it!! 🤗 So, it matters not what *anyone* else ‘thinks’, because you are *living* the truth — 1st hand. 😌 🙏
Just try to keep focus 👓/ energy ⚡️⚡️ on *healing* as much as your body 🕴, mind 🧠 , spirit 👻 allow & enjoy every blessed improvement 😊 along the way & every loving moment 💕 with the people who love 💗 & appreciate you. *Enjoy* your life! LIVE your life ( healthunlocked.com/nras/pos.... ), Mintychristine!! 🙏 🍀 🌺 🌞
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If you're interested in exploring 🕵️♀️ 🔎 further, consider skimming Resources I'd found helpful, which are in my profile: healthunlocked.com/user/kai-- (Merely click on the blue "Read more" text.) The list of References will appear. They were accumulated (over time) like a 'Table of Contents' of a book 📕 & are merely listed for easy skimming. 😌 🙏 ]
You're welcome to leisurely peruse 👓 👀 anything that sparks 💥 your interest. Or, happily, voraciously devour 🍖 🐕 anything that has you hungrily seeking more. 😁 ☺️
Or, If it's simply 'not your cup of tea' ☕️ , readily by-pass/ ignore. 🙏 😑
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Im on his waiting list.
Ive got so much now to read Cant thank you enough. Like I said I've already started a tiny process but haven't led to the "plant based" there's a lot to learn hey two days of semi and it's a tiny bit better. The gluten-free from shops recently got bad wrap for mis-leading sugar content. He's good so impressed by the explaining the spillage from gut to bloodstream Did I tell you when the anaemia came they did endoscopy -normal. Took all the laxatives for Colonoscopy and they didnt clean me out 2nd attempt doubled laxatives..couldn't work the scope the dr said tons of leaky gut that knotted up and wudnt uncoil thats when I had MMR then it was blocked ducts. Didnt think it was relevant that either cudnt go to the loo or massive clean that helped but I groaned in bed when I cudnt go. When the guy said he was ill with cherries it was exactly like me cos when I'd starved for 2 days I said to husband I felt hungry but better. I kinda thought if I stayed away from bread,meat sweet stuff I cud muddle thru But I've lapsed so much I think I need the right track to clean+ heal my bowel. I have app with gastrointestinal dr few wks. If they help my ducts it will help the rest is like you say progress stay on right path stop reaching for " just anything" to eat more planning. It's like he says again if small progress is made that's a miracle compared to inflamed stomach, joints etc.Thank you Kai I will post when it settles in and I know it will take time but you've given me hope and Id lost hope when Mxt didn't help xxxxxx
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[Very welcome, Mintychristine. 😌 🙏 ]
Wow!! 😳 Don’t know what to say! 😯 If you’re seeing results/ improvements this early on (by merely ‘semi’ implementation) then it looks like things bode well for you as you "clean out" the gut/ bowel even further [ healthunlocked.com/nras/pos... ]!! 🤗 👍👍
[Don’t know if fibre/ prunes will help ‘move things along’? Or, could possibly ‘backfire’ & exacerbate things? 🤔 🤷♂️ 🤷♀️ (Merely ‘thinking aloud’.)]
Very, very exciting. 🤗 Thrilled to bits for you!! Hope 🙏 improvements happen in leaps & bounds & you return to ‘normalcy’ 💁♀️ in good time — whatever the ‘new normal’ 🙎♀️ evolves into.
Fingers crossed🤞🤞.
Yes, yes, very much look forward to future progress as things settle in. And, maybe, down the line, you’ll be one of those podcast guest 🎙 🙋♀️ that explains how you did it can share realistic hope with people who are also interested! 😃 😄 😁
[Got a big kick out of seeing fellow forum members andyswarbs & Shaun94 tell their stories. 😃 It’s one thing to read their experience written 📝 in a forum, & it’s a whole other thing to hear them speak their experience in the flesh & blood 💁♂️💬 🙋♂️💬 (of video 📹 ). Both Andy & Shaun are huge inspirations to me ☺️ as well as many, many others. ☺️ 👨👩👧👦👨👩👦👦 ]
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🙏 🍀 🌺 🌞
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Hit a liitle wall this week.....
swelling fingers
Can you change meds ?? Is this a valid reason ??
Rituxan and side effects 
Tough time on methotrexate
