Body pain: Hi, Is anyone experiencing severe body... - Thyroid UK

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Body pain

Amazon07 profile image
29 Replies

Hi,

Is anyone experiencing severe body pain? I get really painful back, hips, and legs. My legs feel heavy too, and my feet are very painful. I just turned 40. I'm still breastfeeding my 28 month old daughter so for this reason and the bad things I read about painkillers, I try to stay off them, but sometimes I have to take some paracetamol...

I'm on a mix of NDT and T3 - just switched to NDT and T3 from T3 only in March (gradually). I'm taking 25 mcg of T3 at 3am, 1grain of Thiroyd at 11am, and 1grain of Thiroyd at 5pm.

I'm taking kelp for iodine, Se, Mg, B complex, D3, K2, and started taking iron replacement too (Floradix), this seems to help with dizziness. I'm also taking CoQ10 and Nutri a Thyroid. I've been gluten-free for nearly 20 years, and lactose-free too (very rarely I eat dairy and take lactase enzyme but I don't feel well on it, so most of the time I avoid it). I eat Paleo 95% of the time (I'm only human and fall off the wagon sometimes, but never eat gluten!), cook everything from scratch.

My stress levels are medium (low really but I'm a sensitive person), sleep is not the best (stay up too late to fluff around but I'd need at least 8-9 hrs, instead I get usually around 7...)

I don't have Hashimotos, just plain hypothyroid. Temperatures are optimal, my two main symptoms are body / muscle ache and brain fog.

Can anyone offer any insight on what to do to get rid of it? I need to be fit for my baby! Exercising does help a lot, just sometimes life takes over...

Is there something g else I could be doing to feel better? Some days the pain is 7-8/10! :-(

Thanks!

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Amazon07 profile image
Amazon07
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29 Replies
HEA72 profile image
HEA72

Hi Amazon07

I too get body pain. Intense body aches and pains in any part of my body, this is in sync with my low energy, when my energy's better my body pains and aches lessen too. I put this down to poor mitochondrial function and therefore a build up of excess lactic acid. I find when my thyroid hormones are optimised and I take optimal nutritional support for mitochondrial function, this helps with pain reduction.

You haven't mentioned any B12 supplementation? I know having adequate B12 can help alleviate aches and pains too. Making sure we have a good supply of omega 3 oils in the diet can act as an anti-inflammatory. Some people find supplementing with turmeric acts as an anti-inflammatory too. Thus reducing symptoms of pain.

Taking epsom salt baths helps my pain too. I, like you, avoid pain killers, which can be hard going but preferable for keeping a healthy gut if you can stick out the discomfort of the pain. Have you tried eliminating nightshade foods? I discovered I was intolerant of these and my joints are far less stiff since staying off these foods.

Hope some of this helps. :-)

Amazon07 profile image
Amazon07 in reply toHEA72

Hi, thank you so much for your reply! I do take 1500mcg of B12 most days in Methylcobalamine form. I usually forget the Omegas but eat plenty of good fat in my diet (like nuts, etc).

Turmeric is great, I usually take a big teaspoonful (with a bit of black pepper) but not allowed supplements of it as it is too potent for breastfeeding apparently... Never tried Epsom salt baths, I do Mg bath and that does help a bit.

Oh, no, I didn't think about nightshades. That's tomatoes, peppers and aubergines, right? I will do that! Anything to get rid of this awful pain! I also notice that when I'm so achy, I am more podgy too :-( Sigh!

It's so frustrating that some people totally abuse their body and live without pain, in comfort, and we have to suffer like this. So unfair! (sorry for sounding like a whiney teenager LOL)

Thanks for your help! :-)

HEA72 profile image
HEA72 in reply toAmazon07

I know, I feel the same. I walk the talk yet I'm more unhealthy than most I know who have terrible diets and lifestyles in comparison. Have you had your gut checked? I found out I had 'increased gut permeability'aka 'leaky gut syndrome. This caused an autoimmune response in my body, increasing inflammation. It sounds like you're doing loads to help yourself, well done for that.

As far as I'm aware I too don't have Hashimotos just a thyroid issue. I'm in the process of trying to find out what the cause is. I'm waiting back for the results of the DIO2 gene test, because I have a history of difficulty in converting T4 to T3. Do you think this maybe something you have?

It's also good to get checked for toxic metals and chemical toxicity - these can affect thyroid function, as well as nutritional deficiencies. Also physical trauma to the thyroid area can affect the glands function e.g. whiplash or birth trauma. I have had whiplashes and I had a difficult birth - I was breech forceps delivery, which a chiropractor felt had affected my glands function. There can be so many causes. And it does mean being a super-sleuth to it all. Which is challenging when we feel so damn awful at times. Unfortunately GPs aren't trained in such diverse investigation. Hence some of us still remaining ill and then seeking to find healthcare practitioners that can help us. :-(

humanbean profile image
humanbean

I reduced my body aches and pains enormously by getting my vitamin D levels up to optimal. I wasn't even desperately low in vit D but improving my levels made a huge improvement.

Have you had any of your vitamins and minerals measured recently? If so, post the results and the reference ranges for us to comment on. The most important ones are vitamin D, vitamin B12, folate and ferritin/iron. Any other levels you know about would be a helpful bonus.

I used to get excruciatingly bad pain in my feet. It disappeared when I got my thyroid levels up and my nutrient levels improved. I would say it is likely something of yours is not optimal.

By the way, iodine isn't recommended by many people. All the thyroid meds you are taking - the T3 and the Thiroyd already contain iodine. The body recycles it if possible, so taking supplements is not a good idea unless you know for certain (because you've been tested) that you are treating a deficiency.

Amazon07 profile image
Amazon07 in reply tohumanbean

Thanks humanbean! Ive been supplementing 2000iu of D3 / day for 2-3 years, but no, never had levels tested as far as I can remember...

I had iron tested and it wasn't in the top 1/3 of the ref range, but friar to that my ferritin was above the range (which I know can indicate inflammation - this was during my pregnancy and afterwards) so I stopped taking my iron supplements (I started to take it originally because my ferritin was very low).

Kelp always made me feel better, I just take organic sea kelp, one moderate pinch / day. I think I had B12 tested a while back and it was in the top 1/3, so was folate.

I guess I need to have these tests done again, please could you advise what should I get tested?

I'm not sure if I'm taking optimal amount of T3 / NDT. My temps are good but my body ache hasn't improved much, if at all...

I used to take 62.5mcg of T3 in 3 doses (25-25-12.5) and moved (gradually over 2 months) to my current protocol of 25mcg of T3 at 3am, 1 grain of Thiroyd at 11:00am and 1 grain of Thiroyd at 5pm. I still feel sluggish, very achey and muzzy-headed :-(

Lindzvan profile image
Lindzvan in reply toAmazon07

New on here but what is thiroyd is this obtained privately.. I take levenothyroxine hot my dose over a year to 100 feel OK just wondered what it was please

faith63 profile image
faith63

you need to find out why your thyroid went out.. it is NOT normal to have a gland malfunction. You are so lucky to not have autoimmune disease. What you have is reversible through functional medicine.

Amazon07 profile image
Amazon07 in reply tofaith63

Thanks faith63, how do I even begin to do what you said?

Auntyp62 profile image
Auntyp62 in reply toAmazon07

For me functional medicine was dangerous and did not work

faith63 profile image
faith63 in reply toAuntyp62

would you be more specific, please? i am struggling with the functional medicine approach for 4 months, now again for 9 with no improvements, but unable to follow the grain free rule due to my medication containing corn and lactose too..so upset by this.

faith63 profile image
faith63 in reply toAmazon07

watch this video.. start here

youtube.com/watch?v=4xXjv8_...

then..try this article

drhyman.com/blog/2015/06/10...

Autoimmune disease can be reversed, you can make the thyroid work, with time and patience...

Amazon07 profile image
Amazon07 in reply tofaith63

Mine isn't autoimmune though, I do t have Hashimotos. Can this still help me? If so, then do you know a good functional medicine doctor you'd be able to recommend?

Thanks x

faith63 profile image
faith63 in reply toAmazon07

i did not watch the video again..i don't believe it is just about hashimotos at all. Yes functional medicine could help you get back on track..which is better than being on thyroid meds, while your own thyroid atrophy's. You will be on them forever then, totally dependant. If i were you, i would do anything to not be on those meds, with all there problems.

I am in the US. I think the functional medicine websites have a doctor locator..

try here

drhyman.com/blog/2010/08/08...

i wish i could do more searching for you, but i am having an off kind of day..google everything you need and you will find help. this is what i do everyday.

Amazon07 profile image
Amazon07 in reply tofaith63

I'd do anything not to have to take thyroid meds and be well! That's for the info, I'll look into it soon (we're just off on holiday for 2 wks).

Thanks for your help!

faith63 profile image
faith63 in reply toAmazon07

please let me know if i can direct you any more..maybe my head will clear. You are very lucky to not have autoimmune, i believe it creates more symptoms and as you know, thyroid meds create a whole new set of problems..

How do you feel? How is your weight etc..?

Amazon07 profile image
Amazon07 in reply tofaith63

Thank you!

I feel in so much pain. My legs are heavy and achy, my calves burn, my feet are very painful. My back in painful, my hips and the area between my shoulder blades hurts. I get sciatica. My hands are clumsy and weak. I find it hard to think at times, and feel muzzy-headed. I forget words mid-sentence and I forget my line of thought, I get confused. A LOT of times I can't say what I want to say, I can't find the words (Might be due to speaking 2 languages simultaneously pretty much; I speak Hungarian to my daughter and to others, but speak English with my husband as he is English and doesn't speak Hungarian. We also watch English TV and I read books in English and read English websites).

Re: weight, I didn't put on any weight with my pregnancy (I was sick pretty much all the way through and couldn't eat much...) but now I could do with losing at least a stone. I feel very heavy for me. I have flab on my thighs and my stomach. People say I'm slim but I'm not! :-( I'm tall, 180cm and weigh around 72kg. I feel good at around 65-67kg. I feel lethargic when I think about all this. I find it hard to go to bed in the evening, I feel agitated after my sleepy period passes around 9:30. If I go to bed then, then it's good, but 99% of the time I find something to do and go to bed late and I'm shattered. Like now. It's 00:42 here. And we are travelling whole day tomorrow as we're going on holiday. I'm so sensitive (always have been) and the only thing that keeps me going and makes me feel truly happy is my daughter whom I adore, and helping other people. I love helping others.

When I exercise just 20-30 mins every day, that definitely helps.

Thank you for asking and thank you for helping me!

Auntyp62 profile image
Auntyp62 in reply tofaith63

There are a lot of people who have idiopathic hypothyroid, I am one of them and have been medicated for 45 years and have in the past been told by a young hospital doctor that there is no reason to take thyroxine and I was weaned off only to be admitted to hospital 3 months later in a myxoedema coma. A reason for it not working has never been found and I have tried functional medicine amongst other things to no avail. We are not lucky not to have autoimmune reasons as the symptoms and life effects are the same. It is not reversible it just IS.

faith63 profile image
faith63 in reply toAuntyp62

please see info in above reply..video and website..

that is because you did not heal your body and possible nutrient deficiencies before hand. That is one idiot doctor, who needs to loose his license. I can see why you would want to stay on meds no matter what, after that! I for one, will be working on putting my hashimotos into remission and getting off of meds. I Have felt terrible since i developed this disease and thyroid replacements don't help me at all.

Auntyp62 profile image
Auntyp62 in reply tofaith63

Functional medicine or nutritional therapy as it was previously called has only been available for about 20years in the uk. I have been consulting with a practitioner for the last 15 not just for thyroid symptoms. most of the nutrients in the video i have been supplementing at one time with no improvement. 6 months ago I started b12 injections and assumed I would need less thyroid hormone but I was wrong as symptoms became worse and I find myself taking more thyroid than before. Only with the right dose of thyroxine do I feel well but I don't have hashimotos and from what I know of it, it is harder to control.

Amazon07 profile image
Amazon07 in reply toAuntyp62

I'm not sure if functional medicine is the same as nutritional therapy?

I think my hypothyroidism is idiopathic too, or possibly inherited, I'm pretty sure my late grandmother had hypothyroidism as well!

I haven't watched the video yet but the amount of different supplements and vitamins and minerals I've taken over the last 20 years, and the thousands of pounds spent, you won't believe it!!

I was well to start off with on Levo only for about 15 years but then I had a huge amount of stress and started to get symptoms. I wasn't responding to increased Levo dosage and my FT3 was below ref. range. My GP refused to prescribe T3 because he 'didn't know how to dose it'. After seeing Dr P and following his protocol and feeling better adrenal-wise, I decided to switch to T3 only and felt wonderful thyroid-wise for 3 years. Started to feel bad about 5 months post-partum, and that was 22 months ago... :-(

faith63 profile image
faith63 in reply toAmazon07

are you sure that you have not developed hashi's..it is common with pregnancy issues, menopause etc..maybe get a retest?

It is not about heredity, in the sense that it just means that the issues are expressed as hypothyroid, in your family. Hereditary is only part of the equation, with most reversible by us through things we can control.. Gluten, grains, and chemicals is a huge one.

read here

thyroidpharmacist.com/artic...

i don't know if she talks about heredity here or not, but most can be turned around.

Amazon07 profile image
Amazon07 in reply tofaith63

Just wrote to you further up :-)

I had the test done for Hashi's last year, when my daughter was 1 year old, in a private hospital in Thailand, and it was negative. They checked TPO and TpAb (I think that's what they called, crap brain...) too, and the end was lovely and had no reason to lie to me, I do gave the results somewhere but it was definitely negative, I posted on 2 other firums the results and I was told on both that I definitely don't have Hashi's.

I have been gluten-free for 19 years, Paleo for about 4 (but not during pregnancy - I was only gluten-free in pregnancy as I couldn't stomach meat most of the time and there were very few things I was able to eat due to feeling and being sick, one of them was gluten-free Apple and cinnamon pancakes so I ate those...)

I went back to Paleo after I gave birth. I'm 95% of the time strict Paleo but occasionally fall off the waggon, mainly sugar (chocolate or lactose-free ice cream as I'm lactose intolerant too...). After eating stuff with sugar, I feel a marked difference - I feel AWFUL for days!

faith63 profile image
faith63 in reply toAmazon07

i will get back to you so, i am having some especially bad/stressful days recently. you must feel pretty down..you try very hard and should be ok, really!

Amazon07 profile image
Amazon07 in reply tofaith63

Thank you very much!! I hope you feel better soon too! Stress is horrible :-(

We are on holiday from today, we just travelled whole day. I'll do my best to respond asap but we have quite a full schedule.

Thank you so much for helping me!

fibrolinda profile image
fibrolinda

Have you got your blood results? How long have you been in so much pain? Pain sucks I know😩

Linda

Amazon07 profile image
Amazon07 in reply tofibrolinda

Hi Linda, thanks. It's been nearly 2 years. I had some bloods done recently, iron was 16.6 (8.8-27), transferrin was 2.7 (2.00-3.80), TSH 0.01 (0.55-4.78), Free T4 0.08 (0.89-1.76), FT3 3.39 (2.30-4.20).

Since this blood test (in March) I switched from T3 only to T3 and NDT mix. I was hoping that this will help but I'm still in a lot of pain. :-(

fibrolinda profile image
fibrolinda in reply toAmazon07

Hi Amazon07 well I am no expert but learnt so much the past 9 months from this forum and you certainly had room for a raise in NDT or T3. T4 was bound to be low when on T 3 only and not a problem but T3 imho would be better a bit higher. But then its how you feel that's most important. Okay, the pain😩 I suffer with Fibromyalgia as well as hypothyroidism and to me it sounds like so do you..... Of course I could be wrong and SO HOPE I am. B12 is best around 1000 so top of the range that says 'consider reducing if over 750?' Yes well ignore. Pain can be because B12 is low I believe.Your iron could be higher, maybe like me you need to take a lower maintenance dose once optimum.

I did Blue horizon Thyroid 10 blood test via Thyroid UK website to find out where I was (as my gp said all was in range) which gives the ones most important in thyroid issues. Their Thyroid 11 does Vitamin D as well. Sorry foggy brain is being its usual helpful self so struggling to think. But ask and read and learn... I am ☺

X linda

Ruthi profile image
Ruthi

You are most certainly undermedicated IMHO.

And being hypothyroid is enough to cause the kind of pain you describe - that is exactly how I felt when, according to my GP, I was not in the least hypo. I was, of course, and probably just ran 'high' in my healthy days. I always need my free T3 at the top of the range or even slightly above to feel at my best.

Amazon07 profile image
Amazon07

Thank you Linda and Ruthi!

I do take 1500mcg of B12 in form of Methylcobalamine, have been for a few month, no improvement :-(

I must add that when I had the text done, I didn't take my T3 for over 12 hours and any supplements at all for 2 weeks (I was advised to do this before tests on TPA UK).

I thought I was taking enough meds because my temps were OK and I'm no longer cold, actually I'm quite warm (although were we are - in Hungary - it's been very hot this summer...)

My other symptoms include dizziness (this improved a bit since on NDT) and I forget words mid-sentence, or what I'm talking about. Very annoying!! :-( It almost feels like I had a stroke (but I didn't thankfully) my hands are so clumsy and weak, very frustrating! I just don't know what to do, I so want to get better!

I'm not sure if I an get the bloods done through that website here Linda, but I'll have a look at what tests the Thyroid 11 includes and will try to get them done here privately.

Thank you x

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