Severe joint pains.

[tjkj69]

I’m at my wits end. All my joints are aching. They are so very painful. Even struggling to squeeze toothpaste out of the tube it hurts so much. I have hashis ( 20 years now ) and on 200 mcg thyroxine. I’ve been tested for RA but negative. What can I do ? All suggesting very welcome. It’s getting me down.

[SlowDragon Administrator]

Low vitamin levels are extremely common with Hashimoto's

What vitamin supplements do you currently take?

First thing is, do you have any actual recent blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels if not been done

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Are you on strictly gluten free diet?

Or tried it?

[shaws Administrator]

I'm sorry you are struggling. I looked on your Profile for a background of your condition but there's only your name.

Do you have details of your most recent blood test results you could post.

If GP didn't check your Free T4 and Free T3 at your last test, ask for these to be done. Also your vitamins minerals have to be optimal, i.e. B12, Vit D, iron, ferritin and folate.

The following is a list of symptoms:-

thyroiduk.org.uk/tuk/about_...

If your FT3 is low, that could be a reason. I will also state I'm not medically qualified. I also think that many who take levo may not be converting it to sufficient T3. T4 is inactive and has to convert to T3 and it is T3 which is needed in our millions of T3 receptor cells. I think that could be the reason you're suffering.

Research has shown that many improve with a combination of T3/T4 which is impossible if you're in the UK, although if an endocrinologist does we can get prescribed.

If GP refuses to do the necessary checks. Do you always get the earliest appointment and allow a gap of 24 hours between last dose of levo and test and take it afterwards? If not your results wont be true. It is also a fasting test.

[Caroline888]

This probably doesn't apply at all, but just in case it does: have you recently changed your brand of levothyroxine? I developed severe joint pains when my levothyroxine was changed from Wockhardt to Actavis.

Sometimes the different fillers and excipients in the tablets can cause problems but this is a very individual thing.

Hope you find the answer soon.

All the best

Caroline

[tjkj69 in reply to Caroline888]

Yes Caroline I have. Lloyd’s have stopped doing mercury pharma and now on a new brand !!! I’ll speak to doctor about this. Thank you.

[Caroline888 in reply to tjkj69]

When you get your new prescription from your GP, I would phone round all local pharmacies to find out which ones stock your preferred brand. Your GP should write "Mercury Pharma only" on your prescription. It's still wise to check before you leave the chemist's that they have actually given you the right ones as they will not take them back afterwards. Twice I have been given Teva in error but realized in time to hand them back to the pharmacist.

Hope you get this sorted soon.

Best wishes

Caroline

[SlowDragon Administrator in reply to tjkj69]

Many people find Levothyroxine brands are not interchangeable.

Get new prescription from GP

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

Ask GP to retest thyroid levels and vitamins 6-8 weeks after being back on Mercury Pharma

Make sure to get "Mercury Pharma brand only" added to your prescription.

Picking up paper prescription from GP reception enables you to take prescription to different pharmacies until you can get brand you need. Small independent pharmacies are often more helpful