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Original poster

Anyone made a lifestyle overhaul to deal with AI issues?

74 replies

MrsJonesAndMe · 05/09/2018 13:40

I have a wonky thyroid - tired Hmm losing hair, anxious, depression, bloated...did I mention tired?

Conventional medicine says there's something wrong with you but we won't treat you (yet) sub clinical hypothyroidism

Everything I read about more 'natural' and integrative methods says you need to cut out a lot of different foods, get a decent night's sleep, reduce stress and do yoga Wink + supplements and probiotics etc.

So, in a long winded way to go about it...has anyone done this before? Anyone who would like to support each other to do this?

TIA

OP posts:
IsJustMe · 06/09/2018 14:41

Yes, it is totally what I have done, and generally very successfully, but it continues to be a work in progress and I do get fed-up with it sometimes. I have Hashimoto's (the wonky thyroid disease), and other AI diseases, and other health issues.

GreyandGrumpy48 · 06/09/2018 16:29

In the same situation and really need to get my act together and make the lifestyle changes I know would help. I would love to support each other in feeling better. Have you got any ideas as to how you want to start?

WerewolfNumber1 · 06/09/2018 16:36

I’m just starting on this - I have pernicious anaemia and lupus (both auto immune) and omg the tiredness.

Long term risks with lupus are also quite scary.

I’ve just ordered a book called “the immune system recovery plan” all about lifestyle changes and written by a doctor, so will see if it’s helpful.

Original poster
MrsJonesAndMe · 06/09/2018 19:57

I've started with avoiding gluten, taking a supplement for thyroid and probiotics and doing yoga when I can.

That book sounds good and yes would love some support!

OP posts:
Kintan · 06/09/2018 20:08

First thing I'd suggest is cut out gluten - which I see you have done. I have Hashimoto's and this makes a massive difference. Have you been tested for thyroid antibodies? This will tell you if you have Hashimoto's or a regular under-active thyroid. Do you know what your TSH reading was? I also take a fish oil supplement which has really helped with stiff joints :)

GreyandGrumpy48 · 07/09/2018 07:57

Can I ask those who have given up gluten- do you see any benefits if you reduce it short term? I am away in a couple of weeks and know being gluten free will be nearly impossible there. I was wondering if I cut out obvious gluten in the meantime- bread pasta etc whether I would feel any difference and then I could go gluten free when I got back.

WerewolfNumber1 · 07/09/2018 12:40

I’m not sureb(from what I’ve read) that just cutting gluten for 2 weeks would help, think you’re looking more at a few months and then maybe being able to reintroduce it?

hungryhippie · 07/09/2018 12:46

I haven't made any significant changes but I really need to.
I have Hashimotos which is really badly controlled, so I flip from hypo to hyper and get my medication changed all the time. I also have absorption issues with vitamin D and am waiting on coeliac disease tests.

I just feel like a big ball of tired pain at the moment :(

AuntieO · 07/09/2018 13:28

Hi, sorry you are suffering, it's really crap to feel like that with no relief.
I've been researching different diets recently as my health is just so awful at the moment that I am struggling with daily life.
I have hashimoto's hypothyroidism and ulcerative colitis. My thyroid levels are up and down like a yoyo, I am piling on weight nd I have pain in my hips and lower back everyday.
I washed "sick, fat and nearly dead" by joe cross recently and it struck a chord with me. It's an extreme way but it seems to help a lot of people. He has chronic urticaria and managed to come off steroids, lose weight and greatly improve his quality of life by juicing.
I'm building myself up to try it, starting within the next week, I am desperate to feel better.
I'll let you know how it goes if you like?

AuntieO · 07/09/2018 13:29

Should say *I watched

EachandEveryone · 07/09/2018 13:34

How are your joints? My are terrible I can’t wear shoes anymore. It’s been a year now and I’m sick of feeling so tired. I’m starting hrt today I don’t know if it will male a difference. My go said my thyroid is fine with the meds I’m on but I don’t think she gets it. I’m being checked for celiac next week as well.

hungryhippie · 07/09/2018 13:38

My joints are awful too. My hips are so painful and my fingers, toes and knees throb.

hungryhippie · 07/09/2018 13:56

@AuntieO Do you get your medication changed every time your levels change? I seem to spike hyper and then a few days later I crash back down. My consultant tested me on a spike last time and reduced my levo from 150 to 100 and now im a mess. Its so hard to manage isnt it :(

EachandEveryone · 07/09/2018 14:11

Does anyone go on the American groups? They seem to be offered more natural thyroxine if they want it. What specialist are we supposed to ask to see? Rheumatologist? Endocrinologist? Sometimes on a morning I can’t face the thought of putting my feet on the ground. It’s not planter it’s all over my foot and in every single toe.

Original poster
MrsJonesAndMe · 07/09/2018 14:28

Hi, thank you thank you all for posting. Not really got time to answer properly now, but will come back over the weekend.

Take care all of you!

OP posts:
hungryhippie · 07/09/2018 14:55

I see an endocrinologist. They dont really do much either.
They run a few more tests than the GP do and thats it.
@EachandEveryone The Americans get access to NDT which is made from pig thyroids. It seems to work very well.

AuntieO · 07/09/2018 15:27

@hungryhippie,
My tsh initially was 92 when I was diagnosed and took about a year to get down to acceptable levels.
It was between 0.5-1 when endo discharged me back to GP. Since then, I've had to remind them to test me regularly as they seem to forget.
Had tsh done a few months back and told was normal, GP said it wasn't when I was seeing her 2 weeks back. Apologised as I should have had my meds adjusted. It's gone up to 7 and I've been really struggling with tiredness etc. No bloody wonder!
I've been in doses ranging from 100mcg-200mcg, I think it's difficult to get the right balance 😕

My GP thinks my pain is to do with my thyroid, have no vitamin deficiencies or anything. Sorry you're in pain too, it really sucks! Flowers
@eachandeveryone
It would be an endocrinologist for thyroid issues.
I've been on some of the USA groups but it frustrates me that a lot of stuff isn't available to us! We are so behind in terms of thyroid disease treatment, it is so misunderstood.
I have some joint pain but mine feels more like bone pain. Some of my pain is due to the ulcerative colitis too so it is difficult to tell.
Hope you get some answers soon, take care Smile

EachandEveryone · 07/09/2018 15:39

I’m thinking go might be right testing me for celiac then.

epicclusterfuck · 07/09/2018 19:11

Hashimoto's here too and been in a lot of pain recently, joint and muscle it feels like. I have a referral for fibromyalgia clinic that I need to follow up. I am also coeliac and on B12 injections. I take vitamin D when I remember. Often feel tired and have poor sleep.

It would be great to have a 'prescription' for lifestyle changes! Can't do much exercise but do walk, good diet apart from some gf stuff which is full of sugar... I think sleeping better would help a lot if anyone has any tips for that?

hungryhippie · 08/09/2018 08:59

@epicclusterfuck Have you tried magnesium supplements for for the muscle pain and to help sleep? I tried it a while back and it did help. I stopped taking them stupidly though.

epicclusterfuck · 08/09/2018 09:02

Thank you yes I do take magnesium too and I think it does help a bit. Still get a lot of tingling and pins and needles type sensations though.

starbrightlight · 08/09/2018 09:14

Can I join in? I take thyroxine for underactive thyroid and agree it's a roller coaster trying to keep in balance. I take Magnesium citrate supplements, and pre and probiotics, linseeds, and have reduced gluten down to almost none which I think helps.

Some doctors seem to understand better than others, I've found. As long as the TSH is within what the lab says is normal (approx. 0.1 - 5.00), they think we're fine, but some realise that we need to be nearer to 1 than five to feel well. Certainly there is a huge difference in how I feel if my TSH is at the higher end or lower end of normal. I always have to arrange for annual blood tests myself - I never get a reminder.

Years ago, after being fine on 200mcg for many years as my oestrogen depleted naturally 200 mcg turned out to be far too high and for a brief period (before I sussed out what was wrong) I was diagnosed as bi-polar.

I'm currently taking 125 and due for a blood test to check my TSH.

Original poster
MrsJonesAndMe · 08/09/2018 14:46

Hi all

just finding time to sit down and come back to this. Sorry to hear there are so many of us struggling with similar things.

I'm lucky that I am not in pain, but there are niggles and the tiredness. Mostly and vainly, the hair worries me!

I'm not on any meds. Will see if I can get a printout of my last bloods to see what my levels were/what was tested.

I've done a meal plan for the week and some cooking today to help ease the load of the week a bit.

OP posts:
WerewolfNumber1 · 09/09/2018 02:25

@epicclusterfuck- you might already know this, but if you’re on b12 injections it helps to take folic acid supplements as well - I have pernicious anaemia sobeen on b12 for years and the absorption is better if you also take folic acid.

Interested to see people taking magnesium, I’ll add that to my roster of supplements!

@starbrightlight - what’s the linseed for?