arthritis and bone spurs

[sandy471]

Since starting to take levothyroxine over 2 years ago I flared up with arthritis and now have to have a new knee! Bone spurs in knee joint plus one in my heel. Has anyone else had a flare up of this following medicating with levothyroxine?

[SlowDragon Administrator]

See from your profile you have fibromyalgia

This can be due to being under treated on too low dose of Levothyroxine

Do you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies?

Arthritis can be exacerbated by gluten intolerance

everydayhealth.com/rheumato...

arthritis.org/living-with-a...

Gluten intolerance extremely common with Hashimoto's

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 if Thyroid antibodies are raised or if under medicated

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)

nhs.uk/medicines/levothyrox...

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Suggest you come back with new post once you get results and ranges on Thyroid and vitamins

[sandy471 in reply to SlowDragon]

Thank you Slow Dragon for all the info.

I'm on 150 mg thyroxine which my GP was rather unwilling to give me saying his TSH was probably the same as mine! (2.6) In the past I've had private tests but GP wasn't too pleased as he said they are not quality controlled etc! I wonder if he would be content with just using nhs tests? At the moment what with so many other problems I am loathe to stir things up as having a new knee might help my feet. One thing at a time. Most times I'm just so fed up and tired with it all!

Re gluten I am on a low carb diet and have been feeling so much better with my tummy and generally all over apart from the pain. I am avoiding carbs mainly and eating less meat, lots of veg and fruit and fish and losing very slowly. I don't tend to feel hungry on it. I had a piece of birthday cake the other day and felt really weird and dizzy with the sugar so won't be doing that again for a while!!

I've had fibromyalgia for almost 30 years after a hysterectomy and my thyroid was fine then.

[Murphysmum]

I have issues with bone spurs.

I got two on my knees many years ago - before I think I knew I had a thyroid problem.

Recently I’ve got one on my foot and one of my finger joints.

Fortunately mine are all on the outside edges so are unsightly but don’t cause many issues. Apart from certain shoes rubbing my foot 😕

I’d love to know how to stop them though. I have a grinding in my neck now and I really hope it’s not something similar...

[sandy471 in reply to Murphysmum]

Yes shoes are difficult to find. The foot with the bone spur has an enlarged heel so really need a larger shoe for that foot! In the summer it's easier with sandals and wear slip - ons with a heel from Fitflop which are so bouncy!

Walking has gone downhill since the knee problem and I really have to pace myself. My fingers are totally deforming. I do exercises everyday for my back, hips, knees etc and feel so much better afterwards although it's hard to get motivated to do them sometimes when you're not feeling well.

I see an osteopath every few weeks and she's been very helpful. Alas I don't think there is any way of stopping the decline but it might be worthwhile trying a gluten free diet. I'm trying low carb and avoiding sugar and have felt a lot better and losing some pounds too! Deputy leader of the Labour was on the radio talking about his massive 4 stone weight loss from such a diet and it seems to make sense.

Whatever you do you have to try it for a few months and not start anything else when you're doing it!