Help with results

[Lulu24]

Hi there. It's been suggested to me this forum is super helpful. I was diagnosed with UAT about 3.5 years ago and am treated with Levothyroxine. The last year or so I have been really struggling getting the dose right. At 125mg a day I felt sympomatic, at 150 I was overmedicated (confirmed by blood test). I tried alternating the dose but felt overmedicated again so dropped back to 125. Now I'm symptomatic again so had obtained some T3 to see if that might help. I ordered a private medical test which has thrown some new things such as low B12. Please could anyone help me understand these results as my feeling is that it's not as simple as I thought! Thank you in advance

[shaws Administrator]

First you have to see your GP about your very low B12 - he should test the intrinsic factor to establish whether or not your have pernicious anaemia. Usually if we have one autoimmune condition we can have more. It is recommended to have B12 around 1,000. If it is below 500 changes can occur - excerpt:

The definition of deficiency in the UK is below 200pg/ml — but harm to the brain can begin at anything below 500.’

healthunlocked.com/thyroidu....

If you look down this post and look at SeasideSusie's response re ferritin,folate etc. as yours are very low and GP is failing you.

healthunlocked.com/user/sea...

[shaws Administrator]

Your TSH is over range at 5.55 and if we lived elsewhere other than UK we'd be diagnosed if TSH was 3+ but for some unfathomable reason the BTA say it has to reach 10 before being diagnosed. They don't take clinical symptoms (know none either) into consideration. Whereas before blood tests and levothyroxine we were diagnosed upon our clinical symptoms alone and given a trial of natural dessicated thyroid hormones (NDT)

[greygoose]

Hi lulu24, welcome to the forum.

So, those results are from being on 125 mcg levo, right? Looking at those, it's difficult to imagine that increasing to 150 mcg, would make you over-medicated. So, when you say 'confirmed by blood test', what exactly were the results of that test?

The reason I ask is that I see you have high antibodies, which means you have autoimmune thyroiditis - aka Hashi's. Did your doctor mention that to you? Now, when you have Hashi's, if means that your immune system is attacking your thyroid, out of the mistaken belief that it is the enemy. It wants to destroy your gland. And it does that by repeated attacks, destroying it little by little. After each attack, the dying cells dump their store of hormone into the blood stream, causing levels in the blood to rise temporarily. People think that this means they've 'gone hyper', or that their dose is too high. But neither is right. What you've had is a Hashi's 'hyper' swing, which is nothing to do with your dose of thyroid hormone replacement, and the levels will go down naturally, by themselves. And, I'm wondering whether that is what has happened to you.

After each attack, you find yourself progressively more hypo, and people worry that they cannot stabilise their dose. Well, no, you can't, and that is perfectly normal. And, there's not much you can do about it. The best thing you can do is to take enough thyroid hormone replacement to suppress your TSH, and keep it suppressed, without - of course - going over-range on your FT4. And, taking T3 can be very helpful for that - among other things.

Of course, before starting your T3, it would be best to optimise your nutrients, because they are pretty bad. Your doctor needs to know about your very low B12 and ferritin, and he should do more tests, as shaws mentioned. So, when you've got yourself started on a plan to increase your nutrient levels, then come back and ask more about starting T3, and people will be able to help you with that. But, you're right! It really is not as simple as your thought!

[Lulu24 in reply to greygoose]

Hi Greygoose, thank you for this, super helpful! This test is the first indication I might have hashis and your note goes a long way to explain the last year!

Yes in February of this year my T3 was 6.8 where top of range was 6.5, my T4 was 26.8 vs top level of 24 with a TSH of 0.03 plus I felt symptomatic. I dropped to 125 and progressively started feeling really rubbish again. Blood test at that point May time was around 2.5 for the TSH and T4 had gone right down. I tried at this point alternating daily between 125/150 and matters improved slightly. Then the palpitations and forgetfullfness returned so I assumed without blood test it was too much. Now I feel pretty awful with the aches and pains and depression, dry skin etc, similar to when first diagnosed. I plan to up to 150 again, GP appointment on 12th. He will support my decision I'm certain and I will request the B12 is investigated.

Thanks again!

[greygoose in reply to Lulu24]

And the ferritin! Don't forget the ferritin! That is vitally important, too.

Palpitations and forgetfulness sound more like hypo symptoms, to me. It is very difficult to judge by symptoms, because so many of them cross over. Which is why we need blood tests as a guide.