Constant all over body aches : How does everyone... - Thyroid UK

Thyroid UK

124,838 members146,107 posts

Constant all over body aches

Luci20 profile image

How does everyone manage constant all over body aches? I have had this permanently for over a year now. I know some people try going gluten free but I just don’t know how I can do this. I have tried a few brands now of gluten free bread and I just couldn’t eat it as it does not taste nice at all. How had anyone managed with going gluten free? Or has anything else helped the body aches for anyone? Has anyone had the body aches stop once their results have been stabilised for a while? My results were normal for a few months at one point but I still had the body aches during this time. My TSH is still currently under active.

24 Replies

Hi Luci20

Do you have any recent bloods?

Briefly my main symptom is muscle and joint pain. This is much improved by thyroid medication. I am going take a punt and say you’re undermedicated. I notice your last bloods showed high ft4 but you didn’t have a result for ft3? You can’t tell if your optimally treated until you know what both are.

Luci20 profile image
Luci20 in reply to Yeswithasmile

Yes my thyroid is still under active. Last test for TSH was 6.0 and this was in April. I have had a dosage increase since. My GP won’t do any additional tests.

Yeswithasmile profile image
Yeswithasmile in reply to Luci20

Then I can only recommend monitormyhealth for the cheapest way to get tsh, ft4 and ft3. You’re not alone. Doctors only seem to excel at providing insufficient testing. You really do need these. It maybe that you are low in ft3 or high but you’ll never know without testing.

I won’t bore you with the details but suffice to say for decades I suffered with this joint pain. It’s always been thyroid related I just didn’t realise.

FancyPants54 profile image
FancyPants54 in reply to Luci20

Then you must do them yourself or you will never know what's going on. Cheapest place for TSH, FT3 and FT4 is Monitor My Health. There's a discount code on Thyroid UK's web site.

As for commercial gluten free foods - yuck! I was gluten free for around 18 months for a different reason. The best way is to just accept that baked goods are off the menu and lean to cook and eat differently. There's no such thing as a decent gluten free sandwich unless you find a recipe you like and make the bread yourself. But the list of ingredients that are required is huge compared to bread which needs just flour, water and yeast. So if you want to try it, concentrate on a low carb diet and higher protein and veg/fruit. That should help you to see if it benefits you.

Whats yr b12, vitamin d and ferritin level NUMBER?

Luci20 profile image
Luci20 in reply to Seaspray1998

Hi these were last tested a while ago and my vitamin d was previously too low and so I am now on vitamin d tablets.

Seaspray1998 profile image
Seaspray1998 in reply to Luci20

By too low, how low, what is the NUMBER? And NHS GP wont give you the correct strength of dosage which is min 10,000iu a day, and MUST be taken as a gel oil capsule as vitamin d is a fat soluble vitamin, and its crucial to take cofactors of K2MK7 and magnesium glycinate and magnesium malate

This to ensure absorption and to prevent hypercalcemia

Luci20 profile image
Luci20 in reply to Seaspray1998

My vitamin d level was actually over the recommended range on my follow up test after I started taking vitamin d tablets so it’s all good now and I know this isn’t an issue at the moment.

SlowDragon profile image
SlowDragonAdministrator

ESSENTIAL to also test vitamin D, folate, ferritin and B12

Request GP tests these vitamins when you get thyroid levels retested 6-8 weeks after last dose increase in levothyroxine

What vitamin supplements are you currently taking

How much levothyroxine are you now taking

Which brand of levothyroxine is it

Luci20 profile image
Luci20 in reply to SlowDragon

I am taking vitamin d tablets and omega 3. I am now taking 62.5mg daily and this is Teva brand.

SlowDragon profile image
SlowDragonAdministrator in reply to Luci20

How much was your dose levothyroxine increased by when TSH was 6?

Are you lactose intolerant that you are on Teva

Teva upsets many people.

Have you tried other brands levothyroxine

SlowDragon profile image
SlowDragonAdministrator in reply to Luci20

How low was vitamin D

How much vitamin D are you currently taking

You need to retest 2-3 months after starting vitamin D supplements

Then retest twice year

Suggest you get FULL Thyroid and vitamin testing done privately via Medichecks or Blue horizon after 6-8 weeks on increased dose levothyroxine

Highly likely to need further increase in levothyroxine after next test

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/files/docs/...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

healthunlocked.com/thyroidu...

jamanetwork.com/journals/ja...

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

Often on offer on Thursdays

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Gluten free breads - generally better toasted

(in separate dedicated GF toaster)

Waitrose sliced brown seeded is excellent, even as sandwiches

M&S brown ok

Warburtons is pretty good

Some are able to eat sourdough bread and I’m talking commercial sourdough bread here in the US. And I have heard of people here on this forum who were able to reduce pain even fibromyalgia like pain with T3. I like to tell the story of my sister-in-law whose dog went to the vet with similar symptoms like she had and the dog was treated with T3 / thyroid replacement hormones. That was over five years ago. The dog was relieved of the pain but she still has the symptoms and has now become handicapped because of the pain and receives government benefits. She refuses to try T3 or anyway to try it long enough to see any changes. I saw a great article here from Dr. Lowe and the experiments he published (I Think the work was actually done by another doctor but he republished it ) with fibromyalgia patients and the success of T3.

Yes forget gluten-free bread. In fact my advice would be to forget commercial bread altogether. What you might try is lowering iodine in your diet. It is neither possible nor desirable to remove iodine but you can eat foods that are less rich in iodine. Try a 30 day experiment you will have to do the research on what foods are high in iodine - then take a look at your own diet and decide if you’re consuming them on a regular basis. As Dr. Lowe has said, “How does the patient feel?” If you feel better after 30 days well then you’ll know. Dr. Alan Christianson has reported that 85% of his patients that reduce iodine feel better. Most of his patients are hypothyroid, but some of them aren’t.

You could also try making your own bread there’s no iodine and flour to speak of. Homemade sourdough bread is especially tasty in my opinion, and I have tried it and I do not experience any of the symptoms as with other commercial breads.

30 years plus on thyroid replacement hormone for Hashimotos ended when I reduced iodine. I am now completely free of the need to replace thyroid hormone. 18 months plus without thyroid replacement.

I don’t know if it’s related, but a bunion that I’ve had for over 5 years is healing / straightening up! Honestly, I feel so good - it seems miraculous. It wasn’t the gluten (which I also tried removing ing for over 10 years). It was the iodine.

Jokaah profile image
Jokaah in reply to dtate2016

Wow, that’s crazy. I have no idea what does or doesn’t contain iodine, but now I’ll have to check it out. I can’t wait 30 years for my miracle, been waiting 5 years already and that’s enough. Any additional information or pointers you could provide would be most helpful.

dtate2016 profile image
dtate2016 in reply to Jokaah

Jokaah

Here is a link from The American Thyroid Association: thyroid.org/low-iodine-diet/

This is the diet advised before undergoing certain thyroid treatments (other than Hashimotos). Nevertheless it does offer a list of foods and whether they are lower in iodine.

Dr. Allan Christianson (here in the US) reports that 85% of people who try a lower iodine diet for 30 days feel better. It worked in a great way for me…so worth the 30 day experiment - cost nothing! Actually spent a little less on food.

Here wishing you well, and that you find yourself included in the 85%. If it works for you? Spread the word. 😅

Jokaah profile image
Jokaah in reply to dtate2016

Thank you, will try anything at this point!

I have no option 😏 but then I prefer to eat naturally gf items only buy the higher fibre pastas, so I stay clear of the free from aisle as much as possible. I rarely eat bread and I make what I need if I eat any.

If your only worry is the bread eliminate it and come up with alternatives.

Unless you know gluten is your problem don’t bother going gf, it’s a known inflammatory trigger, but not for everyone and usually there’s other things going off stress and lifestyle habits and other hormones maybe contributing factors too.

I have Coeliac disease, pernicious anaemia and hypothyroidism/Hashimoto’s

Going gf had no impact on my muscular problems at all, getting blood tests in all areas to a good level, adding hrt and Liothyronine to my routine, keeping to same brand of levothyroxine and getting my TSH under 1 have all helped.

I think it might be helpful to see your blood test results with ranges for others to comment on, but as for gf unless you have autoimmune conditions it may not be necessary to eliminate gluten, if you do need to go gf … I’m afraid like myself there’s no option but eliminate all gluten (and cross contamination) or be heading for serious problems, unfortunately there’s no part time coeliacs.

I also have suffered joint pain and stiffness though I discovered that it was various foods that brought it on. The main culprits were milk proteins so I cut out everything except butter, hard cheeses and heavy cream (I react to some double creams so its trial and error) and chilli which is of the solanaceae family of plants which are all also suspect and I try to avoid in large quantities. Spinach and other vegetables can be high in lectins which is the protein that is the issue.

Until you cut the main culprits out the effects overlap and you do not notice the response of what you are eating. Unfortunately milk and chilli are everywhere!

Everyone keeps talking thyroid and this might be half of your issues have you seen a rheumatologist for the wide spread body pains? If you haven’t you should and definitely get a complete thyroid panel not just TSH.

Luci20 profile image
Luci20 in reply to Batty1

Hi no I haven’t seen one but I think I might need to. I continued to have all over body aches when my thyroid results were normal for a few months so I don’t know for sure if it still all down to the thyroid.

Batty1 profile image
Batty1 in reply to Luci20

This has also been my issue lost my thyroid and almost immediately my body pains swallowed me up to the point walking has been a problem and horrible exhaustion that comes in waves .. and my thyroid test have always been in range which as your finding out doesn’t mean a thing.

I was finally diagnosed with psoriatic arthritis in 2018 but even with treatment the damage is done and the pain still present but at least I can walk now.

Hi Luci. I think the starting point for you has got to be getting the TSH down from 6 to under 2. I don't think GF will help your muscle pains or certainly not as much as getting an increase in levo. I went GF last year but it was to help gut symptoms really as I'd developed some very debilitating stomach issues before being diagnosed. It has helped me with that. Yes, commercial GF bread is mostly rubbish and very expensive, and I'd only eat it toasted out of desperation. I have found Genius crumpets very good though. I never ate crumpets before going GF but these are a good fluffy texture. I got a copy of Becky Excell's ' Make anything gf' from the library and it has some really good recipes which don't use loads of ingredients, mainly just GF flour, and xantham gum and other regular baking items for bread, and there's pizza bases and all sorts. We'll worth trying if you feel the need, but really it's medication you need. I had very severe muscle pain that took several months to improve to any great extent after starting levo, so you need to give it time on a proper dose until your body recovers.

Everything has been pretty well said. You need to have a full thyroid panel to know where you stand and take it from there. Here is some research you might be interested in:

tandfonline.com/doi/abs/10....

I found this sentence very interesting: "Despite low TSH and free and total T4 levels, and high free T3 levels, there was no evidence of thyrotoxicosis."

You may also like...