Carbimozole

[Noniekin]

I am three weeks into my treatment for Graves and feel like I have been hit by a bus. Anyone else with crippling fatigue?

[Hidden]

Hello,

I'm a relative newcomer, having only been diagnosed with Graves at the beginning of November, and I felt exactly like you do for about 9 weeks. In the last few days I have begun to feel a little better, finding myself doing some of the small, non-essential things around the house that I had to let slide early on. Although my levels on diagnosis were pretty high, and my TSH 'undetectable' I've been on low doses of carbimazole, 5mg to start with and then 15mg for the last 6 weeks, so perhaps if you're on a higher dose you may feel an improvement sooner. Let's hope so.

[greygoose]

How was your Grave's diagnosed? Were antibodies tested - TRAB or TSI?

[Noniekin in reply to greygoose]

I am new to this and have no clue what the results mean. Free T4 - 38.6, TSH - .03, T3 - 15.9. Any insights??

[greygoose in reply to Noniekin]

To me, that means you have Hashi's, not Grave's.

Hashi's is an autoimmune disease, like Grave's, but it swings from hypo to false 'hyper'. Sorry, can't go into more detail at the moment, because I've got to go out. But, with Grave's, your FT4 and FT3 would be much higher than that. Those results look like Hashi's. And the only fool-proof way to tell which one it is is to test the antibodies: TPOab or TRAB or TSI. If your doctor hasn't tested the antibodies, he's only guessing, and you could be on the wrong treatment. And that could be why you are now so fatigued.

[Noniekin in reply to greygoose]

Thankyou that is so interesting as las five years I’ve had weight gain and low mood not opposite. Seeing Endo next week will ask.

[greygoose in reply to Noniekin]

Don't let him fob you off with something like, 'oh, antibodies aren't important, it's the TSH that counts'!

[Valarian in reply to Noniekin]

I agree with Greygoose's point re antibodies.

Do you know what the reference ranges were for FT3 and FT4 (typically in brackets after the results) ?

It's not uncommon for thyroid levels when first diagnsed with Graves' to be around double the reference range. TSH, however, is usually undetectable.

These guidelines aren't mandatory, but they do suggest that Graves' should be confirmed by antibodies once you are seeing a specialist - are you seeing an endo yet, or still under your GP ?

cks.nice.org.uk/hyperthyroi...

Also, what has actually been prescribed ?

[Noniekin in reply to Valarian]

T4 reference range is (10-19) mine - 38, T3 (3.5-6.5) mine - 15.9. I am on Neo- Mercazole 30mg daily and Noten beta-blocker. Muscle aches, chest pain, swollen ankles. Thanks so much for reply I am only week three into diagnosis and haven’t seen the specialist yet because it’s holiday season. Uggh.

[helvella Administrator in reply to Noniekin]

Trying to make sure I am understanding properly.

Are those results from three weeks ago? That is how I read things. In which case, after three weeks on Neo-Mercazole, the Free T4 and Free T3 values could have dropped significantly. If so, you could have catapulted from being hyper to being hypo.

[Noniekin in reply to helvella]

Yes been on them for three weeks and due for next test in a week. I understand it takes time - so must be patient, but my exhaustion was so intense it seemed odd. I had a stress cardio too that showed nothing, so will just sit it out 😀 Thanks for the tips on how this might swing bw hyper and hypo.

[helvella Administrator in reply to Noniekin]

Can you bring forward that test?

You really, really do not want to wait while getting more and more hypothyroid - if what I have suggested is the case.

[Noniekin in reply to helvella]

Thanks yes getting it done tomorrow

[Valarian in reply to Noniekin]

Sounds like you aren’t in the U.K. ?

The beta blockers should help with the chest pain fairly quickly - if not, go back to your doctor. Did you have the swollen ankles before you started on the medication ?

Muscle aches unfortunately may take a bit longer. Assuming you have Graves’ (really still need antibody tests), the Neo-Mercazole will reduce production of new hormone, but you won’t begin to feel much better until you’ve exhausted existing stores within your body - the medication can’t do anything about those.

Once your thyroid levels are in range (maybe a couple of months), you will begin to feel better, but unfortunately it could be quite a while before you feel completely better.

This leaflet explains anti thyroid (ie Neo-Mercazole) treatment. It’s aimed at a U.K. audience, su the approach may be slightly different where you are, but the main points should be very similar.

btf-thyroid.org/information...

Neo-Mercazole is a brand name for carbimazole.

[Noniekin in reply to Valarian]

Thankyou so much. Yes I am in Australia as I couldn’t find anything online here. I gather you are saying muscle aches and chest tightness could be part of this - Thought I was having a heart attack but the stress echo test didn’t show anything.

[Valarian in reply to Noniekin]

Pretty common with Graves’ - also racing pulse and breathlessness, and weak muscles eg in the legs.