Hashi's, primary hypothyroidism and thyroid antibodies

I'm working on a theory that the endo who failed to diagnose my pHPT may also have messed up my thyroid diagnosis.

When I first saw her I asked her for Armour thyroid (old-fashioned natural dessicated thyroid) but had to accept thyroxine from her instead. She let my TSH get to 10 before prescribing thyroxine and I could swear that she originally diagnosed me with Hashimoto's thyroiditis. I was making some thyroid antibodies back then, but not off the scale.

Over the two years I've been seeing her she has started now to write Primary Hypothyroidism on her letters back to my GP. She did agree to add in some T3 to the thyroxine, and as the latter made me feel so grim I eventually came off the thyroxine and take only T3 now.

I didn't realise that a thyroid antibody test had been done at the last blood draw for her clinic, but she mentioned in her last letter to my GP an anti-TPO level of over 400, and the range given was 0-40. She didn't make any comment about this high level and I've only just noticed it.

Could I ask Nelly or Edwin (or anyone else with low thyroid knowledge/experience) if such a high anti-TPO level should be ringing bells with someone?

If you have "just" Primary Hypothyroidism, would you be likely to make such a high level of thyroid antibodies?

Or do you only make thyroid antibodies with Hashi's thyroiditis?

Any help to clarify this would be gratefully received!

Love from Tigerlily xxxx

I'm with you on this one tigerlily, 
I also think I could potentially have hashis.  With my fluctuations in tsh. 
I've heard that anti bodies can be normal sometimes in the hypo phase and raised in the hyper phase. Sometimes in both. However I have very little knowledge on thyroid activity as maybe Nelly can enlighten me too 
rachel xxx

OK here goes ladies,

Raised antibodies indicate Hashimotos and the antibody level will go up and down as they attack the thyroid, there isn't any point in keep measuring them. The treatment is the same for both Primary and Hashi so antibodies make no odds in the end, its just useful to know and be able to recognise when they may be in attack mode.

Tigerlilly, 400 is high but nothing to worry about, just means you have them and they happen to be in active mode when you were tested. People can have levels in the 1000's.

I originally had Graves with high antibodies, now 40+ years later I no longer have a thyroid, I still have Graves antibodies but no thyroid for them to attack. 

TSH levels fluctuate for everyone, no matter if you have Hashi or Primary , if TSH is high the amount of thyroid hormone is reduced so you are underactive, if TSH is low thyroid hormone output increases so you are potentially hyperactive. 

TSH is not a good measurement when on treatment but useful for initial diagnosis if the doctor is aware that the range as it stands is pretty useless, any TSH above 2 is likely to a cause hypothyroid symptoms.

No idea if that has helped at all, if not ask me another 

Nelly

Thats so helpful Nelly, 

I hope you don't mind me Asking questions too Tigerlily. 
I've had my antibodies tested and they were normal but this was in the hypo phase.
Nelly can I ask how hashis is medicated?  
I'm guessing thyroxine for hypo phase but what happens in the hyper phase. 
Rachel x

Thanks for your replies, Rachel and Nelly - I'll chew on this for a bit and return tomorrow!

Night Night - Tigerlily xxxx

Rachel if no antibodies were detected you probably don't have hashi, they don't come and go, they would be detected at some level and may increase/decrease or not. The treatment would be the same, thyoxine, it doesn't change if antibodies flare up, not necessary and impossible as meds don't work that quickly.

Hasimoto is just a name, makes no difference to treatment.

Nelly

Thanks for clearing that up Nelly, 
greatly appreciated !

Rachel x