Graves or not?

[Kriticat]

Is 2.6 U/L (Range <2.00) a borderline TSI result or is it definitely Graves? Am I trying to find the right dose for Hashimoto's when I should be blocking and replacing?

I was under medicated with levo and a week after a dose increase I started to feel better but it only lasted a few days and now I am struggling again. I don't think I should test again yet as it's only been 4 weeks but I'm feeling really desperate, especially as anti-CCP test came back high and looks like the excruciating pain in my wrists might be RA.

[PurpleNails Administrator]

Above 2 is positive range for Thyroid-Stimulating Immunoglobulin.  & that’s usually sufficient to confirm Graves but what are your levels doing?

The TSH is unreliable, you have antibodies & likely fluctuating thyroid levels so you need to look at FT4 & FT3 and treat those to keep them In range. 

You can have both hashis & Graves as  Elevated - TPOab (Thyroid Peroxidase antibodies), & TGab (Thyroglobulin antibodies) isn’t unusual with Graves so difficult to know for sure.

Then theres TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies). So if you have very high blocking antibodies you’ll be hypo

TPO antibodies which signify “clearing up debris from - immune attacks” If you’ve been hypo previously & needed replacement then it’s likely you have both condition and you may be susceptible to great, unpredictable fluctuations.  In which case block & replace is the more stabilising option.  

[Kriticat in reply to PurpleNails]

Thanks, that's certainly true, my levels have been up and down in the last year, but only TSH has gone out of range... both T3 and T4 have ranged from suboptimal up to almost 98%, in the case of T3.I haven't had TRab test, so will add that to the list next time...

If block and replace is likely to be the more stable option I wish my endo had suggested it... I have an appointment with another one in the new year, hopefully they will be a bit more clued up!

[pennyannie]

Hey there again ;

As mentioned previously Graves is considered life threatening if not treated and takes precedence over Hashimoto's :

Are you an Anti Thyroid drug for Graves such as Carbimazole or Propylthiouracil ( PTU ) ?

The AT drug simply puts you into a holding position by blocking any new thyroid hormone replacement being produced and slowly your T3 and T4 fall back down into range and your symptoms hopefully relieved.

Too high a dose of AT drug and you feel hypothyroid and then the dose needs titrating down - too low a dose of the AT drug and you may experience symptoms hyper type symptoms and maybe the AT dose needs increasing.

Both Graves and Hashimoto's are auto immune diseases for which there is no cure and something has happened to trigger your immune system to turn around and start attacking your body - Graves is said to be stress and anxiety driven - and I can attest to that.

When Graves eventually attacks the thyroid and eyes the symptoms are such that you need medical intervention :

Hashimoto's tends to just attack the thyroid and systematically disables the thyroid gland rendering the patient hypothyroid and prescribed T4 - Levothyroxine and given time thyroid function is all but gone and the patient requires full spectrum thyroid hormone replacement and this Auto Immune disease dies with the gland.

[Kriticat in reply to pennyannie]

Thanks @pennyannie, Im not on any anti thyroid drug, just T4. I asked my endo and she said that as the TSH wasn't that high it was most important to get the hashimoto's under control... but the more I read on here the more I doubt she knows what she's doing! On the plus side, although my TSH dropped to 0.01 neither T3 or T4 have gone over range and all of my symptoms seem more hypo than hyper.

I know many are common to both, but I have gained weight, and haven't had any palpitations or anxiety (except about all these bloody autoimmune things! ) and I take my temperature as soon as I wake up every morning... I am consistently below average, ranging from 34.8 to 36 at the absolute highest, usually around 38.5. I've found another endo and will see her in the new year, so fingers crossed I will be OK until then.

[pennyannie in reply to Kriticat]

Is that a typo 38.50 ?

[Kriticat in reply to pennyannie]

Oops, yes, 35.8 is my normal waking temperature!