Feeling worse?

[rachie881]

Hi everyone

I started on Levo 50mg 2 weeks ago, and tbh I feel pants! I ache all over, elbows,shoulders, wrists, knees, ankles, back and even my fingers are stopping me knit.

Is this a common reaction? Does it last long?

Thanks, Rach.

[Marz]

Do you have Hashimotos ? Are you supplementing B12 ? - your result in your earlier post was low. VitD - result ?

[rachie881 in reply to Marz]

Hi the b12 is at the bottom of in range so Dr said no supplement, I have started vit D colecalciferol 3000u.

[Marz in reply to rachie881]

So are you happy to remain on a LOW B12 or would you like to to be OPTIMAL. Have you read up on B12 and the problems when low. Not least brain shrinkage and other neurological issues. Scroll down in the link below ...

b12deficiency.info/signs-an...

If you have been following and reading the posts here since you joined then you will know Docs rarely understand B12 and the seriousness of it when low.

[rachie881 in reply to Marz]

Of course I want it to be optimal, but the last few months been awful. I had to fly to France for the last moments of my mum's life, sorting funeral and helping my dad with the aftermath. Now I'm back and forth helping him sell up and move to the UK. I'm still trying to get my leg ulcer to heal.

My health took a backseat for a while, but now the initial shock of losing mum is less I'm trying to get back on track.

[Marz in reply to rachie881]

Your reply to me sounded as if you were not going to do anything about your B12 -as your GP said no supplement .... It is suggested to take Magnesium and VitK2-MK7 with VitD supplementation. B12 injections could well help with the ulcer pain too ... or under the tongue B12 lozenges.

Sorry to read of your loss ...

[rachie881 in reply to Marz]

Thank you.

Sorry if my reply came across that way, I had to fight for the Levo and vit D. The Dr wanted to "wait and see" for another 8 weeks. I'm trying to build up for another fight. .

Both the hypothyroidism and vit D are recorded as NOS when it's more than likely to be hashimotos.

[Marz in reply to rachie881]

Hashimotos is diagnosed by having raised TPO anti-bodies. NHS do not test Anti -Tg it seems. Any chance of having a Home Testing Kit through Thyroid UK ?

Not sure what NOS is ? I live in Crete so .... 😎

[rachie881 in reply to Marz]

Not otherwise specified.

I will look at the kits, thanks.

[Marz in reply to rachie881]

thyroiduk.org

Click onto the above link and then About Testing - to view the companies offering Private Testing ...

[SeasideSusie Remembering]

Rachie881

It's possible to feel worse before you start to feel better. But what brand of Levo have you been given? If it's Teva many patients have had adverse effects from it. If it is Teva you could tell your GP about the side effects and ask for a new prescription and make sure you get a different brand.

[rachie881 in reply to SeasideSusie]

Hi yes it's teva so I will ask for a brand change, thanks for that info.

[SeasideSusie Remembering in reply to rachie881]

rachie

If your prescription just says "levothyroxine" and doesn't stipulate a brand (many surgeries wont name a brand) then you may have to ring around a few pharmacies and ask which brand they are dispensing. Check your pharmacy bag before leaving the pharmacy just to make sure you haven't been given Teva again. Once you've gone through the door you can't have it changed.

I hope you find a change of brand helps.

[FancyPants54 in reply to SeasideSusie]

As SeasideSusie said. I was given Teva last year and felt like I'd died! I went to the local pharmacy and talked to them and they agreed to keep a supply of Wockhardt in stock for me and to only dispense that brand for me. They put it into their computer. I must say I am very impressed with them. Only a small pharmacy. They always have my brand ready for instant dispensing and then restock ready for next time. So even if you can't get your doctor to specify brand (although my surgery will, and because they can't hold it for me themselves in their in-house dispensary, they send my prescription straight to the pharmacy I've been talking about), find a small local pharmacy and ask them to help you. Boots won't do this. You need a small one, with a human face.

[rachie881 in reply to FancyPants54]

I will ask mine, they usually do what they can to help.

[miserablecat in reply to SeasideSusie]

I was goingvtobsuggest same thing . Had awful problems with teva need to try other makes until find one you compatible with

[Lotika]

hi Rachie,

Yes, I felt worse once I started taking levo. It did eventually settle down once I got to the right dose and once I was able to supplement the levo with a little T3, in my case.

Unfortunately it can be a very slow process to get to the right dose. I would say it took me around 9 months to start feeling OK. In addition to that, I need to make sure I eat well and look after my vitamin levels, particularly D, B12, Iron etc.

Lotika.

[SlowDragon Administrator]

Definitely ditch the Teva. Then stick on 50mcg dose for 6-8 weeks before retesting

Dose should be increased in 25mcg steps, retesting each time, until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Essential to have good levels of vitamin D, folate, ferritin and B12 too

[Djb20]

I've had this for a year now. GP has out me through so many tests, (lungs, scans, x-rays, eyes, sleep) which are still going on - everything but the T3 blood test that I have requested time and again. It's so frustrating not to be listened to.

The aches are so bad I can hardly walk or get up from a horizontal position. With me it's shoulders, knees thighs, back and yes fingers too, like they have froze painfully at each knuckle joint.

Btw, I am on 125mg Levo and take a daily B12 supplement but no change.

[jamesal0 in reply to Djb20]

Djb20 did you ever get to the bottom of the issues

[Djb20 in reply to jamesal0]

Still nothing to report, James. Had so many test including endocrinology test for cortisol. They say everything is fine, but I still ache all over like I've taken a beating every day. Never knew my body could feel so old and bruised. Only 52. Still pushing my GP who is at least very understanding and always willing to push me toward new consultants and tests.

I was great on Levothyroxine for just one month, felt amazing, then my body just went pain crazy and it's been like that since, for a good two years now. But I'm still keeping on.