Chronic pain: Please can anyone tell me if they... - Thyroid UK

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Chronic pain

Hj1976 profile image
23 Replies

Please can anyone tell me if they have found improvement in joint pain as a result of going dairy and/or gluten free. I have been taking 50mg of levothyroxine since the birth of my son four years ago and have suffered joint pain ever since which keeps me awake every single night.

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Hj1976
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23 Replies
Snoddyoddbod profile image
Snoddyoddbod

Know it's not any help but I'm glad I'm not the only one with joint pain. Sometimes it's tolerable but other nights my knee joints are on fire!!

I went Paleo three years ago and the knee pain I used to suffer from disappeared. Grains really aren't good for us!

Ellie-Louise profile image
Ellie-Louise in reply to

Looking up Paleo just now because I'd never heard anything other than the name before, I see you have to avoid dairy.

My question is this, "How do we protect our bones etc. without taking in the calcium we would absorb by eating dairy foods?"

I for one, could never contemplate life without cheese!

Shecallsitabuggy profile image
Shecallsitabuggy in reply to Ellie-Louise

Strength training, and you only need very moderate amounts, helps with osteoporosis.

Hj1976 profile image
Hj1976 in reply to

Thanks for you info. I am currently giving up grains to see if my IBS improves too. I know a lot of people with IBS and hashimotos, seems too coincidental for the two not to be connected,

Thanks again

Helen

Fidan profile image
Fidan

Hi. My endocrinologist told me taking any T4 medication destroys calcium in the bones, which in return can give a person a pain in joints and bones, so one should also take calcium tablets when on T4 containing medication.

Patriciamt profile image
Patriciamt

Hello Hj1976

I would recommend giving those up for me they were a great help.

Have you considered sugar being the culprit?

Something I have found on my journey to better health is if I stop eating sugar my knee and shoulder pains improves and is no longer noticeable.

I am a sweet addict I think, so I give it up most of the time which isn't easy because it is in 80% of food in supermarkets like sauces.

I believe sugar is the culprit because when I 'fall off the wagon' and have some - Easter being the last excuse - my knuckles and knees are really painful. It's always my knuckles I feel it first though for some reason. Once I stop eating the sweets my knuckles return to normal within 3-4 days.

If you need help with giving it up (and you may be one of the lucky ones who doesn't have a sweet tooth) I cannot recommend the film 'That Sugar film' enough which shows what happened to a very fit man when he spent over a month eating the average persons consumption of sugar in 'normal' food and NO chocolates or sweets just food. The damage to his Body that occurred and (the good news) how after returning to his usual sugar free diet that his fatty liver etc returned to normal. Watch it.

Hj1976 profile image
Hj1976 in reply to Patriciamt

Thank you so much for your advice. I've been overwhelmed by the amount of people that have offered their help. I am a sugar addict too. I will make a big effort to cut back on sugar as well as going gluten and dairy free. I have to try, because the pains I feel are affecting my health (can't sleep every night, becoming very forgetful etc) and making me feel really down.

I will watch the sugar film, sounds very interesting. Many thanks once again, Helen

Patriciamt profile image
Patriciamt in reply to Hj1976

Hello Helen

Glad if it helped.

Let me know what you think about the Sugar film. I think you will find it very interesting.

Pat

startagaingirl profile image
startagaingirl

Hi - joint pains can be caused either by undermedicated hypo or by low vit d. As 50 mcg is only a starter dose you are very likely to need more. Have you any recent test results you can share? If you give us these then members will be able to give specific advice. Ask your gps receptionist for a copy, you are entitled to this. The other main potential cause is low vit d level which is very common in hypo in UK as we simply don't get enough strong sunshine, especially in northern parts.

To fully assess your condition you really need tests for the following

TSH

Ft4

Ft3

Vit d

Vit b12

Folate

Ferritin

TpoAb

TgAb

If your GP won't do these (unlikely to), then private testing is easily available from Blue Horizons or Medichecks.

It is possible to feel an awful lot better when on a proper level of meds and supplements to improve (extremely common) deficiencies.

Gillianxx

Hj1976 profile image
Hj1976 in reply to startagaingirl

Thank you for the advice. I have had all the blood tests available on NHS but everything has come back normal. I know there's something definitely not normal because of the level of pain I'm in. I really worry if I can keep working if I get any worse. I've tried meds for pain anti inflammatories and nerve pain meds but they only take the edge off and I want to get to the bottom of what's causing me to feel so poorly.

I think I will have to bite the bullet and go private to get more extensive tests done. I'm 41 but feel over 80 at the moment! I will follow your advice. Thanks once again Gillian, Helen xx

startagaingirl profile image
startagaingirl in reply to Hj1976

Hi - as many people on this forum will tell you, "normal" as called by a doctor is not necessarily good enough. For instance a gp would call a vit d level of 50 "normal" as it is in range, but optimum is actually 100-120 ish. A ferritin of 20 with range of 20-200 would be classed as in range and hence "normal" but so would be 190 - optimum is 100-130ish btw. So if you can get copies of results post them - with the ranges (in brackets usually) - and we can give more specific advice.

I had suddenly very stiff and sore joints at 46 after surgery and vit D definitely helped, even before hypothyroid diagnosis.

Gillian

Shecallsitabuggy profile image
Shecallsitabuggy in reply to startagaingirl

This point is very relevant. My doctors repeatedly want me in the “normal” range and my body does not. I’m a big proponent of self advocacy. It’s difficult because doctors can be jerks and finding one who can think outside the box is key.

Redditch profile image
Redditch

I had dreadful joint pain but it did go. I am gluten and dairy free but it wasn't that.

Yoga and enough medication

It's a thyroid symptom, it's also a vitamin D or B12 deficiency

So get some tests done and supplement accordingly.

My D is now 170 and my B12 was never low if the join pain returns it's time to take a bit more thyroxine for me and yoga because being cold and tired stiffens you up so stretching is very therapeutic

shaws profile image
shawsAdministrator

Welcome to our forum,

Widespread pain is a clinical symptom of hypothyroidism and if undertreated it will continue. Your dose of 50mcg is extremely low and you will have to read/learn/ask questions and be your own doctor.

Many women become hypothyroid after the birth of a child.

If you can afford a private test, I suggest using one of our labs which will do a full thyroid function test., TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

These tests (you can also ask GP but some may not do all of them but the lab can do ones you didn't get) give a bigger picture.

Your dose is very low, and might even make you feel worse.

The test has to be the very earliest possible, fasting, (you can drink water) and allow a gap of approx 24 hours between your last dose and the test and take afterwards.

Ask GP for B12, Vit D, iron, ferritin and folate as deficiencies can also cause problems.

Always get a print-out of your results with the ranges and post if you have a query.

thyroiduk.org.uk/tuk/testin...

Look on the following for FT4/FT3 to see why these are important:

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

Shecallsitabuggy profile image
Shecallsitabuggy in reply to shaws

There is a strong correlation between increased vitD and vitB12 in assisting with depression relief. My doc prescribed me vitD 50,000IU a week, and previously I took vitD 10,000 daily but my levels were not high enough. Chronic pain sucks. I’ve had it for so long that at times I just want to crawl into my bed and stay there. Unfortunately, my docs never listened when I said something was wrong. I’m 42 and I currently need a joint replacement in my right knee. This is a direct result of an autoimmune disease I’ve been begging for anyone to evaluate since my 20’s. I was finally diagnosed at the end of last year. I have Undetermined Spondyloarthritis, resulting in arthritis in my neck, lower back and large joints. Advocate, advocate, advocate for yourself. No one else will do it for you, and as an RN, I can tell you most docs are trying to get patients in and out. Find someone with an excellent NP. They treat holistically and spend more time with their patients. And diet certainly has an impact on our health. Just steer clear of most processed foods. Cutting out gluten, dairy and soy is often very beneficial to most people.

shaws profile image
shawsAdministrator in reply to Shecallsitabuggy

Pain that is unrelenting gets people down especially when no solution comes through the medical profession who are very quick to 'name' a condition but don't join up the dots or get to the root cause and some patients are constantly on pain-killers or any other meds instead of what their body really needs..

Shecallsitabuggy profile image
Shecallsitabuggy in reply to shaws

Agreed

Marz profile image
Marz

How are your VitD levels ? - also B12 ? Thyroid results too. 50mcg is a dose that should have been increased as I assume that is the dose you started with 4 years ago. Your GP has been somewhat neglectful :-(

owleymac profile image
owleymac

Hello Hj1976 I too have felt much better after going gluten and dairy free, no bloating, indigestion, heartburn etc. and my joint pains have decreased. I have been on levothyroxine for many years with no problem but recently the pharmacy are supplying new makes of tablet, Activas were fine for years now they are made by Teva and have an added ingredient Mannitol E241 which caused me a fast heart rate of 200 and admission to hospital. If there are no other tablets available where do I go from here? Mannitol is a synthetic sugar used as a bulking agent and I already avoid all sugar substitutes and additives in my diet, am I to now take a tablet that could kill?

My joint pains were terrible, I couldn't open doors, or even the tube tops to many things.

Getting my low vitamin D levels up did it for me

judburke profile image
judburke

Low D3 gives me joint aches and low ferritin makes my muscles ache. As others have mentioned above - make sure these are at good levels not just at the bottom of the range :)

Clarrisa profile image
Clarrisa

If the above measures don't cut it you might then try looking at a table of high oxalate foods (many online) to see if they are over represented in your meal plans. When I've experienced pain preventing sleep I've had good luck with gluten free & cutting back on high oxalate foods like spinach. I wonder if this is somehow related to the "leaky gut"?

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