antibodies high but no review apparently necessary for a year

[Iwilldoit123]

I am 66. Put on 50 mcg levo oct 22 as was feeling terrible with joint pain, weight gain and hair loss.antibodies 1300 although all other results normal. My antibodies are now 1004 (normal range 0-60). Hair loss even worse. Weight going up almost daily and joints and legs so bad I can just about bend over. Tsh 2.70 (0.45-5.5),free t4 17.3 (10.5-21). Ferritin 343.8 (10-291). Told I have a goitre so presume hashimotos. Should my Levi be increased? Help please!!

[PurpleNails Administrator]

Monitoring antibodies isn’t something routinely done & used for diagnosis. Antibodies signify the condition, but not cause it.  

Your thyroid function is what doctors monitor & once at appropriate replacement level monitoring is offered annually. 

50mcg is starter dose - Most feel well when TSH is around 1 in lower part of range & FT4 is in top third of range.Increases are by 25mcg per day & retest after 6-8 weeks. 

Your FT4 is: 17.3 pmol/l (Range 10.5 - 21) which is 64.76% of range.  So room for a increase.  Your doctors has looked at numbers & as in range left treatment at current level.  Are there other GPs at practice you are registered with? See one more willing to help you be well. 

For levo to work well your T4 needs to be converted to the active T3.  & this usually needs to be in top half of range.  Because the NHS do not test FT3 If TSH & FT4 are in range, we don’t know if yours is adequate.  

Also important to test Folate, ferritin, B12 & vitamin D.  Have any of these been tested?

Many test privately as not everything is always tested.  

Recommend for consistency blood draws for thyroid tests should be booked for early morning, fast overnight.  Delay replacement until after draw.    Cease any biotin containing supplements 3 days before draw.  Biotin can skew results.  

[Iwilldoit123 in reply to PurpleNails]

thanks for the reply. My b12, folate, vit d are all mid range ferritin is high at 343 (10-291).

[Jaydee1507 Administrator]

PurpleNails has pretty much said it all but one thing thats important for you to be aware of is that doctors go by numbers and conveniently ignore our symptoms. You will need to be self advocating a lot to get well, and questioning what they tell you. There's usually at least one more helpful ,flexible GP at any practice so approach them at an appointment. Be clear about what you want, a dose increase and stand your ground. Your TSH needs to get to 1 or just under. Also get the vitamin levels checked. Good luck.

[Iwilldoit123 in reply to Jaydee1507]

thanks. My vitamin levels all come in as mid range. I can’t even get a phone consult with the dr until 10 March, but I will certainly push for an increased dose of levo.

[Jaydee1507 Administrator in reply to Iwilldoit123]

You would be quite unusual if your vitamin levels were all OK with no supplementing. What were the results with ranges?

[radd]

Iwilldoit123,

Welcome to our forum,

A goitre usually indicates your thyroid has been working hard to produce enough hormones, and Hashimotos is the most common cause of hypothyroidism. 

For a full thyroid hormone evaluation you will need also need FT3 testing. Your FT4 is presently at 65% through range and given you are so symptomatic I would say you have room for a dose raise. 

With antibodies that high you will no doubt have low grade inflammation going on, and this may be evidenced by your joints and legs hurting and elevated ferritin. This unwanted inflammation can also impair how our thyroid meds work and should be encouraged to reduce with a gluten free and clean diet, and natural anti-inflammatories such as fish oils and Vit D. Selenium is also known to help reduce TPOAb. 

'My b12, folate, vit d are all mid range ferritin is high at 343 (10-291)'.

Elevated ferritin is not a guarantee of adequate serum iron levels and if you feel there could be an iron issue you should ask your GP for an iron panel. Regarding your vits, mid range sometimes isn't enough and if you post results complete with ranges (numbers in brackets) members will comment.

[Iwilldoit123 in reply to radd]

thank you so much. Will try harder with the gluten and dairy free diet.

[radd in reply to Iwilldoit123]

Iwilldoit123,

If we have intolerances that bring about or exacerbate our hypo symptoms, then removing them long term is obviously the answer but it is difficult at first because we feel so ill. I found short term goals are easier to manage, say a week or two at a time. And then if symptoms improve this postive sign gives impetus to extend those goals.

I also don't buy processed gluten free foods that are full of junk but use clean fresh veg, meats, dairy all naturally gluten free and offering nutrients to help thyroid hormone function.

If you find it really difficult just try gluten free first before going dairy free, because not everybody needs to go both. Good luck

[StanleyThyroid in reply to radd]

That's an excellent point - going gf doesn't mean going out and buying lots of engineered food rather adapting your diet. Food you make yourself will be more nutritious and free of preservatives and addives.

[SlowDragon Administrator]

was this test done early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

50mcg is only the standard STARTER dose

Have you had coeliac blood test done on diagnosis of autoimmune thyroid disease - also called Hashimoto’s

If not, request GP test now

Please add vitamin D, folate and B12 results and ranges

Request full iron panel test to check if iron is high….or if it’s only ferritin that’s high due to inflammation from having Hashimoto’s

Are you pre or post menopause?

[NIKEGIRL]

hi. I agree with slow dragon about high ferritin being connected to inflammation. This happened to me. High ferritin connected to inflammation.