Joint pain since starting Levothyroxine

[rustysmum]

Hi. I am about to have my first review with my GP since starting Levothyroxine two months ago. In that time I have developed awful joint pain. I honestly feel like a rough 90 year old most days. It is extremely limiting. I did a private Thriva test off vitamins, including Vitamin D and all came back in the upper ranges, so don’t think it is that, plus has only been since on this medication. Are there any questions I should be asking my GP? Are there any other supplements anyone in a suimilar situation has found has helped. My GP is wanting to talk to me about my latest blood tes ( taken first thing in morning with 24 hours since last Levo dose) so assume she is going to want to raise dosage and am dreading what a higher dose will do to me when I feel like this on 25mg. I also have been waking with numb hands and arms no matter what position I sleep in so assume this must be soemth8ng to do with the meds too. Any advice would be very gratefully received!

[SeasideSusie Remembering]

rustymum

What brand of Levo are you taking? If 25mcg there's a chance it may be Teva or Northstar (which is Teva rebranded) and many members have problems with side effects with Teva brand.

If your Vit D level is good (recommended is 100-150nmol/L or 40-60ng/ml) then I'd be looking at the Levo itself, try another brand as it could well be the excipients which differ from brand to brand.

[rustysmum in reply to SeasideSusie]

Hi Seaside Susie,Thank you for your reply. It is Mercury which usually is fine for most people, isn’t it?

[SeasideSusie Remembering in reply to rustysmum]

Mercury Pharma and Wockhardt both make 25mcg tablets, I can't remember which one has least excipients.

[SlowDragon Administrator]

Standard starter dose of levothyroxine is 50mcg

Starting on too low a dose frequently causes more symptoms

Levothyroxine doesn’t top up failing thyroid, it replaces it. So important to be taking high enough dose

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/Latest-Upda...

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

bestpractice.bmj.com/topics...

[rustysmum in reply to SlowDragon]

That certainly sounds like what the problem probably is .

[jsy_girl]

Sounds like hypo symptoms and you just need more levo. I get numb hands and pins and needles all the time! Do you have the latest results or just the GP appt?

[rustysmum in reply to jsy_girl]

No, don’t have the results yet. They will only give me those at the appointment.

[SlowDragon Administrator in reply to rustysmum]

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

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Link re access

healthunlocked.com/thyroidu...

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.

[Catlover3]

Hi. A long time ago (19yrs) when I was first diagnosed and treated with levothyroxine I had the most terrible bone pain in my hips. Getting out of bed in the morning was horrendous, I too felt like a 90 yr old! The doctor said I was getting arthritis and wanted to give me more pills. I stopped taking thyroxine and went onto ndt and have never experienced that pain since. I also used to get an icy feeling running down inside my chest, again not had it since changing meds. I used to faint often, migraines, legs felt like I was walking through wet sand and palpitations galore. All the time the gp said my levels were fine. I hope you find a change of brand helps and you are optimally treated for all the other vitamins etc and recover your health soon.x

[rustysmum in reply to Catlover3]

Thank you Catlover3 that is very interesting. Sorry you had to go through that. I get the icy feeling too, like some one is rubbing an ice block down my arm. Your experience does sound very like mine.