All over body aches

[Luci20]

I have had permanent all over body aches for over a year and a half. I had a few weeks when this went away after I last had a levothyroxine dosage increase but then the aches returned. My doctors are now saying that I could have fibromyalgia as my TSH levels have been normal/not far from normal for some time. TSH for last test in August was 2.0 (0.2-4) and in June it was 1.4. In April it was 6.0 which is when I last had a increase in levothyroxine. In February it was 6.4 which is the highest it has been for over a year. My legs are the worst and I struggle to stand for long periods due to the aches. Could the all over body aches still be down to my thyroid or could it be fibromyalgia?

[SeasideSusie Remembering]

Luci20

Looking at your profile, you asked about this in May and had quite a few replies:

healthunlocked.com/thyroidu...

Have you managed to go completely gluten free?

Have you tested TSH, FT4 and FT3 all at the same time as was recommended?

You were asked what your Vit D level was and how much D3 you were taking but you never responded. This is very important. So what is your current Vit D level and what dose of D3 are you supplementing with, and are you taking D3's important cofactors - magnesium and Vit K2-MK7.

[Luci20 in reply to SeasideSusie]

Unless someone can recommend some bread products which are gluten free and not full of rubbish and that is edible, it is not possible for me to currently go gluten free. I do not think it is a good idea to go completely gluten free without medical advice as this could leave people being nutrient deficient. Also for some people it makes no difference anyway.

As I have said previously doctors won’t do additional tests and I cannot afford to regular do my own tests at the moment. When I have had the other tests done it hasn’t made any different as they have always been in range.

I am sure I said before that my vitamin D level was actually over the recommended limit last time it was tested so I don’t feel it is necessary to have to state the specific level and dosage that I take when I am clearly not vitamin d deficient anymore. I am also taking a multi vitamin tablet and I am not deficient in anything.

[Jaydee1507 Administrator in reply to Luci20]

So you've come here because you are having issues which could (and probably are) related to your thyroid treatment and yet you aren't taking on board what advice has been given.

I'm gluten (and dairy and soy) free, don't eat the bread because as ou say it really is disgusting. You do need to be a bit inventive with swapping out bread for say jacket potatoes, rice, finding alternative snacks. There are lots of reviews online for bread if you really feel the need for bread. Some GF sourdoughs are supposed to be OK. many people lead successful and much healthier lives without nutrient deficiencies because they are gluten free.

Multivitamins arent recommended here as they often contain cheap ingredients in insufficient quantities to make a difference. They may be the incorrect type of vitamin that you need and you ay be taking things that you don't even require. Unless you get your levels checked you will never know if you are deficient in the key vitamins. Just being in range is not good enough. Blood levels need to be at least 50% of the range and ideally higher.

[Luci20 in reply to Jaydee1507]

Life circumstances can also make it extremely difficult to just suddenly go gluten free. I only have half an hour break at work so don’t have to time to make lunch and rely on sandwiches as something quick to make. Going gluten free is something that could help but also something that could make no difference at all as lots of people have also said this. Also eating at friends and families houses would be impossible as I normally only get offered gluten meals to eat. I haven’t ruled out doing a gluten free trial but just at the moment it is something I cant do as I need to find alternative foods first. Also for breakfast I rely on cereal as something quick to have before work and again there isn’t much gluten free alternatives. Most gluten free alternatives are meant to be full of rubbish and not have any nutrients in them.

[Jaydee1507 Administrator in reply to Luci20]

Agreed that suddenly changing diet isn't easy. It takes a lot of thought and planning as to alternatives and how life will look without it. Thing is, just how bad are the symptoms that brought you here? If you were really that desperate then you would be willing to try almost anything. Unfortunately for some medical conditions we need to make lifestyle changes. There is no pill that any doctor can prescribe that will make it better. That's a fact. It's your choice, but you have been given ideas of things to try that may well help.

[DippyDame in reply to Luci20]

It strikes me that you have two choices....

Consider the advice you have been given and improve

OR

Ignore the advice you asked for and suffer.

And...

Think "positive" ....not "negative"!!

We've all had to cope with " life circumstances" .....many very challenging.

Nobody said recovery was going to be quick, easy or convenient

Over to you....

[SeasideSusie Remembering in reply to Luci20]

Luci20

I am also taking a multi vitamin tablet and I am not deficient in anything.

Multivitamins aren't recommended here for a variety of reasons including the fact that they generally don't contain enough of anything to raise low levels, they tend to use the cheapest, wrong form and least absorbable of active ingredients, certain vitamins shouldn't be taken together as one affects the absorption of the other (eg B12 and Vit C), they often contain things we need to test first and only supplement if found to be deficient (eg calcium, iron, iodine) and if it contains iron then this affects the absorption of everything else as iron must be taken 2 hours away from any other supplements. So don't assume that your multivitamin is helping at all let alone that it means that you're not deficient in anything.

I am sure I said before that my vitamin D level was actually over the recommended limit last time it was tested so I don’t feel it is necessary to have to state the specific level and dosage that I take when I am clearly not vitamin d deficient anymore.

Vit D doesn't have a specific range. It has categories and each category has a range, typically within the NHS something like

Deficient = <30

Insufficient = 30-50

Sufficient/Adequate = >50 or sometimes >75

The Vit D Society, Vit D Council and Grassroots Health all recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health recommending at least 125nmol/L.

As doctors are taught very little, if anything, about nutrition one generally assumes their knowledge of optimal nutrient levels are non existent.

So you can see why you were asked what your Vit D Level was, if you were out of the deficient category you could have been in the insufficient category or very low in the sufficient category and still need to improve your level.

But, hey ho, you don't seem to be interested in letting our experienced members help you and that's your choice. I will bow out now and wont waste any more of my time, I'll spend it helping people that want to be helped.

[Luci20 in reply to SeasideSusie]

Wow, I want to be helped not lectured.

I would also like to hear from people who are going through the same thing but it seems you just always get lectured on here by people who think they know everything and like to criticise everything people write like ‘that’s not the correct terminology’. Does it matter, if you know what I am writing then why correct it!!

[DippyDame]

Until you have a full thyroid test to include the following it is almost impossible to answer your question.

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies Tg and TPO

From my own experience and diagnoses of both Fibromyalgia and ME over 20 years ago I might add the optimal thyroid treatment either eased or resolved many of my symptoms. That may not be the case for everyone diagnosed with FM however.

TSH is a pituitary, not a thyroid, hormone and only indicates the overall level of thyroid hormone in the blood it does not show the level of each Free hormone....and that is vital to reaching an accurate diagnosis. Anything else is basically guesswork!

The fact that more levo relieved symptoms briefly is an indication that you are possibly undermedicated!

Ten months ago you wrote

Also my TSH was still slightly under active until I started my current dosage plan which finally resulted in normal TSH levels - alternative 50mg and 62.5mg dosage.

We don't describe TSH as being underactive....it is the thyroid gland that can be under or over active.

50mcg is just a starter dose with 62.5mcg still being a low dose. The chances are that you need further increases because you are undermedicated!

"Normal" as a diagnosis means nothing other than your result is within the lab range....instead, you need to find the actual point within the range where you feel well. Has your GP ever asked how you feel as part of a clinical evaluation....or instead of looking carefully at you does he just look at his computer screen?

Suggest you start with the full test, post the results then we can look at what is going on and suggest a way forward.

Your nutrient levels ( above) may also be low which adds to the problem

However, you most likely need an increase to 75mcg levo, hold that steady dose for 6/8 weeks then retest and further adjust as required.

Sadly there is no quick fix, the body needs time to adjust to change so patience is vital

One step at a time....testing first.

Meantime, this may in turn help you, to help your doctors help you!!

thyroidpatients.ca/2021/07/...

Good luck!

[SlowDragon Administrator]

There’s loads of great gluten free options these days

Thousands of members find it absolutely essential to be strictly gluten free

Many need to be dairy free too

Best bread in my opinion …..Waitrose brown seeded …especially toasted

Warburtons are good too

Nairn do loads different of GF crackers

[Marymary7 in reply to SlowDragon]

I will add to reply that the Gluten Free porridge sachets taste better than the regular, worth a try and a quick healthy breakfast.

[SlowDragon Administrator]

if toasting GF bread you need a separate toaster

Can get one for under £10 on Amazon

[serenfach]

I was getting muscle aches all over. Blood tests showed low potassium - turned out my new blood pressure pills flushed potassium from the body. So the GP told me to stop taking the blood pressure pills, but did not suggest taking potassium. Sometimes it feels like hitting your head against a brick wall...

You can check your potassium levels with a private blood test if the GP refuses. It just may be your answer. Hug.