Ultra High TSH (150+) Trying Natural Thyroid medication after years of instability on Levothyroxine.

[Hannah_Bluenose]

Diagnosed when I was 9, now 22 and had years of stability on around 200mcg thyroxine, give or take a couple of blips.

The last few years have had quite significantly high TSH levels (90-150+) which seemed to follow a pattern, now seeing a private endocrinologist as NHS endocrinologist was pretty unhelpful.

Any experiences with the natural thyroid hormone? It has been suggested that I don't respond well to synthetic thyroxine so we're trying this. Or anyone experienced similar instances of high TSH?

[helvella Administrator Thyroid UK]

There are two possible reasons for TSH being unusually high:

TSH-oma - a pituitary tumour that pumps out TSH regardless. (Might vary a bit depending on thyroid hormone levels, but usually far too high.)

Interference with the TSH test. For example, antibodies to TSH itself. These antibodies latch onto TSH and form a huge molecule known as macro-TSH. When tested, some testing processes see this as a very high TSH reading. A standard approach is to get a sample tested at another lab which is known to use a technique that is immune to interference of this sort.

A third possibility is pituitary resistance to thyroid hormone.

[Hannah_Bluenose in reply to helvella]

Thanks, they've tried testing for antibodies but nothing of significance came up with that. TSH isn't high every time only in spikes but I'll mention the first one and see what they say. The third option is interesting - they're wondering if I just don't suit the synthetic thyroxine and that's why I react badly sometimes. So maybe I'm slightly resistant..thanks for your thoughts

[greygoose]

Does your doctor only test TSH? If so, then he should try testing the FT4 and FT3 to see if you really are that hypo, or if there is one of the problems mentioned by helvella, above.

[Hannah_Bluenose in reply to greygoose]

Both T4 and T3 get tested regularly, on this test my T4 was quite low (8). I've had these sort of TSH spikes before. Usually around times of high stress

[greygoose in reply to Hannah_Bluenose]

So, the question is, is the high stress causing the high TSH, or are the low thyroid hormones (and therefore high TSH) meaning that you cannot cope as well as you might, with stressful situations. If you know what I mean.

It really does sound like Hashi's. But low antibodies don't always rule out Hashi's, because some people never develop high antibodies, and are diagnosed by ultrasound. Have you had an ultrasound scan?

[Hannah_Bluenose in reply to greygoose]

That's the key thing really, I'm wondering if it is the latter and hashimotos as I've been doing some reading on Hashimoto's and autoimmune thyroiditis and the similarities in symptoms and co-morbid conditions makes me wonder...as I have a few other autoimmune and other related conditions as well.

[greygoose in reply to Hannah_Bluenose]

Well, why not assume it is Hashi's, and try a gluten-free diet, and take selenium. See if that helps anything. There isn't a cure for it, but people do manage to feel better with just those two measures. You also need to get your TSH down to zero, to stop these swings. Are you on thyroid hormone replacement? How much?

[Hannah_Bluenose in reply to greygoose]

They tested me for Gluten intolerance and I was careful for a while but it doesn't seem to have much of an impact. I've done an Autoimmune Paleo Diet but didn't notice many changes as it's not much different from what I eat anyway. I'll discuss it with my doctor as i don't want to take anything that could impact all my other meds but thanks I'm also going to try and get a thyroid scan done (haven't been able to have one yet as my area doesn't do them on the NHS).

[greygoose in reply to Hannah_Bluenose]

What other meds are you taking? If it's just the NDT, then selenium won't affect it if you take it about four hours away.

[Hannah_Bluenose in reply to greygoose]

Levothyroxine, folic acid, naproxen, vitamin D, liothyronine and loestrin - paced out as some can't be taken together.

[greygoose in reply to Hannah_Bluenose]

OK, well, you can't take anything with the levo, but you could take folic acid, vit D and selenium together, four hours away from levo. The loestrin should also be at least four hours away from levo, but I don't know if you can take it with the vit D, etc.