Switching between hypo and hyperthyroidism

[Tishtosh02]

Hello,

I have suspected Hashimotos but, as I have swapped from hyper to hypo, they are taking a number more blood tests before they actually know what is happening. I just wondered if anyone could tell me how long/how many times your thyroid can switch between hypo and hyper before it settles down?

Thanks, Natasha

[greygoose]

Well, it won't settle down. You will continue to swing to 'hyper' every time you have an immune system attack on your thyroid, until the thyroid is completely destroyed. Then it will go back to hypo. The swings will become less and less severe as the thyroid gets smaller, but they won't stop until there's no more thyroid left. And, how long that will take is anybody's guess. It varies from person to person, I'm afraid.

[Tishtosh02 in reply to greygoose]

Oh ok, thanks so much for your response. My specialist hasn’t really explained a great deal yet as she isn’t exactly positive whether it is Hashimoto’s or it could be Graves if it swings back to hyper and stays there. We are just playing the waiting game whilst we monitor my bloods and see what happens. Can I ask how do they treat you if it keeps swinging back and forth?

[greygoose in reply to Tishtosh02]

Oh dear. Another doctor that doesn't know the difference between Hashi's and Grave's.

Hashi's swings between false hyper and hypo - usually starting with a hyper swing. But, you aren't hyper in the true sense of the word, because the thyroid itself is not over-producing. It is just the dying cells dumping their hormone into the blood, cause FT4 and FT3 levels to rise sharply, from time to time. And, because they rise, the TSH drops.

Grave's becomes hyper and stays hyper. It might go back to euthyroid (normal) levels sometimes, when it's in remission, but it does not go hypo (unless you are taking antithyroid drugs).

But, if she thinks it might be Grave's, she could always test the Grave's antibodies: TRAB and TSI. Has she at least tested your Hashi's antibodies: TPOab?

[Tishtosh02 in reply to greygoose]

I think they are a little confused as when I was hyper they tested my blood and things were normalising except my TSH was still 0.02 so they put me on a 5mg dose of carbimazole but I had my bloods tested again about two weeks later and I had gone in hypo by quite a lot. The registrar thought the medicine had done that but the consultant felt I hadn’t been taking the medication long enough or at a high enough dosage to have that effect which is why they aren’t too sure I think.

They tested my antibodies and I don’t have TPO but I do have thyroglobulin I think but she also said I don’t have the common antibody for Grave’s but that not all people will have the antibody.

Hope that makes sense.

[greygoose in reply to Tishtosh02]

Makes sense to me, but they obviously don't know what the hell they're doing!

I think they are a little confused as when I was hyper they tested my blood and things were normalising except my TSH was still 0.02 so they put me on a 5mg dose of carbimazole

They should know that the TSH does not move as fast as the thyroid hormones themselves - FT4 and FT3. The TSH will always lag behind. TSH is a pituitary hormone. But, you don't put people on carbimazole to bring their TSH up!

You put them on carbimazole to bring the thyroid hormones down. And the TSH follows in its own good time.

Carbimazole has an effect on the thyroid gland. It doesn't affect the pituitary. Sounds like they've got this all inside-out and upside-down! Like most doctors, they do not understand cause and effect.

I had my bloods tested again about two weeks later and I had gone in hypo by quite a lot.

Well, you would have! What with the Free levels coming down by themselves after the 'hyper' swing, plus the carbimazole stopping production of your thyroid gland. Given that your thyroid wasn't over-producing, just a little carbimazole would have had a devastating effect on it.

They tested my antibodies and I don’t have TPO but I do have thyroglobulin

Me too. And that makes me Hashi's. But, just because the TPO wasn't high on the day of the blood draw, doesn't mean it never is. Hashi's antibodies fluctuate.

she also said I don’t have the common antibody for Grave’s but that not all people will have the antibody.

I don't think that's true. If you don't have the Grave's antibodies then you don't have Grave's. Unlike Hashi's, where you can have it without high Hashi's antibodies. I think what happens is they see a suppressed TSH and 'diagnose' with Grave's whether there's antibodies or not because they just don't know how it works.

[Tishtosh02 in reply to greygoose]

Yeah, I think to be honest they don’t really have a clue which is pretty annoying for me as I’m just waiting around feeling rubbish having no treatment because they aren’t sure what is going on! I think they gave me a small dose because I was feeling worse and worse so I think he felt sorry for me! But I was probably feeling worse as I’d gone hypo! I just received some blood test results from last week which I think mean things are normalising again but I wondered if you would look at them and explain if what I think is right. So my TSH is now 4.4, my T4 is 10.4 and my T3 is 4.4. I’ve been told I have to have another blood test in three weeks and we’ll go from there.

[greygoose in reply to Tishtosh02]

Well, you haven't given me any ranges - ranges are essential for understanding results - but that TSH is anything but normal. It's hypo. It's hypo at 3. And your FT4/3 look low, but can't really say without the ranges.

But, what treatment do you think they should be giving you? Carbi is absolutely the wrong treatment, as you've found out. And, there is no treatment for Hashi's. And you won't get thyroid hormone replacement for hypo until your TSH gets at least over-range - probably not til it gets to ten! - or your FT4/3 are under-range. They don't like treating what they call 'border-line' hypo, but that's down to their ignorance again.