My daughter is battling to get a diagnosis of her auto immune problems. They cant decide between Behcets or lupus but she has considerable problems with r arthritis as well as part of her condition. She also has the thyroid condition which runs in the family where our TSH are too low causing hypo problems with a hyper Tsh which confuses the Endos completely. She was going for her normal yearly thyroid tests and I suggested that she should have her thyroid anti bodies tested as it's never been done. She is on 100 mcg T4. Her dr has refused to test the anti bodies because of her auto immune problems "overbearing" any thyroid anti body test. This seems odd to me, what does any one else think?
Heather
Written by
heathermr
To view profiles and participate in discussions please or .
Obviously she needs FULL Thyroid and vitamin testing
Has she never had thyroid antibodies tested in past?
Full testing - TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3 or NDT make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Her dr has refused to test the anti bodies because of her auto immune problems "overbearing" any thyroid anti body test.
What does that even mean? I don't think it means anything at all except that her GP doesn't want to spend the money on an antibody test.
Autoimmune antibodies are very specific. So, if she has high TPO antibodies, she has Hashi's, not matter what other autoimmune conditions she has. If they're there, they're there. If they're not, they're not. Simple as that. There is no excuse for not testing - except money.
She also has the thyroid condition which runs in the family where our TSH are too low causing hypo problems with a hyper Tsh which confuses the Endos completely.
Well, let's face it, it's not difficult to confuse an endo! But, you've confused me a little, there.
Firstly, there's no such things as a 'hyper' TSH. It's just a low TSH. But a low TSH can be low for all sorts of reasons, it doesn't automatically indicated hyperthyroidism.
And, I take it her FT4 and FT3 are also low, causing hypo symptoms. Yes? So, what you're talking about is Central Hypo, yes? Where there's a problem with the pituitary or the hypothalamus? I didn't know Central Hypo ran in families. It's not autoimmune. Or are you talking about something else? It would help if you put some of her blood test results, with ranges, on your post, so we can see what's going on.
I have similar issues Psoriatic Arthritis and Hypothyroidism and Normal anti-bodies and all labs show me over medicated Which couldn’t be any further from the truth.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Straight thyroid issues or auto immune disease?
Link between asymptomatic root canals and auto immune diseases
Not hashimotos but auto immune thyrioditis.. 
Could there be a link to a thyroid problem?
