I'm not a mystery anymore LOL (updated 27/11/08)

[Sequoia]

I'm actually underactive ATM.

My T4 was 32 three weeks ago and is now 28 so it's getting into the acceptable range.

Hope you appt goes well, I'd be interested to see how you go if you don't mind updating?

GL.

SG

[{sarah}]

Aaaah ok, that makes sense.

I'll definitely update if I ever manage to get this appointment done. Worst thing is it's so far out from the antibodies BT that she's likely to want to do another one

[Sequoia]

Worst thing is it's so far out from the antibodies BT that she's likely to want to do another one

Sorry, what does this mean?

Have you had an iodine scan yet? I had one on Tuesday and couldn't BF for 24 hours.

SG

[Junglemum]

Hi Sarah, just wanted to give you a little info.....

The RAI uptake test is generally done if they are planning on treating you with RAI. The uptake test involves ingesting a tiny amount of RAI to see where it is distributed within the thyroid and in the case of Thyroid ca, the rest of the body too. Although it is a tiny amount for this test, it is generally not recommended to BF mothers, as your endocrinologist suggested.

To look at the general physiology of the thyroid, the most common radioactive agent used is technetium, it behaves like iodine in the thyroid, but unlike iodine it has a short half and does not emit any beta rays. Beta rays are what iodine emits to destroy tissue. So, it is excreted rapidly from the body without causing any tissue damage. For this test it is generally recommended that you either express prior to the test and use that for the next 24 hrs, or use formula.

From the sounds of it, your friend had radioactive iodine for treatment. Treatment follows the uptake test if indicated. The dose of iodine used for treatment in much higher and that is when all the special precautions come in. Separate cutlery, separate beds, limiting close contact with children and pregnant women, etc.

I hope i am making it clearer for you and not more confusing! Please pm me if i can answer any questions about the RAI at all.

[{sarah}]

Thanks Falguni, that has helped My friend had thyroid cancer a few years ago & had her thyroid removed, the test she had was to check there was no tissue left or someting like that & she had the separate beds etc for about 10 days after. My endocrinologist has said that she won't do any iodine treatment while I'm breastfeeding unless absolutely necessary.

The antibodies test is to see if there if my body is attacking the thyroid & why.

[Junglemum]

Makes total sense. When you have thyroid Ca they want to get rid of ALL the thyroid tissue. So after her surgery, they would have given her a large-ish dose of RAI to kill off any remaining cells as the thyroid can quite readily grow back. If you have RAI to treat hyperthyroidism, the dose is generally not as high as that. Precautions are still taken of course but not as extreme.

Can i also add........... ticker pic of your little girl is very cute.

[{sarah}]

Okay well we finally have a diagnosis.....

Hashimoto's Disease

My T4 is something like 49 at the moment which is really really bad. I've gone from mildly underactive, to normal when medicated, to highly overactive to now extremely underactive..... So we've now come to the conclusion that I have Hashimotos, plus added to that I had Post-Partum Thyroiditis. How crazy to have a condition cause hypo & hyper thyroidism at the same time!!!

I'm now back on Oroxine, double the original dose i was on last year. I'll have another BT in six weeks then an appointment with the endocrinologist after that. Essentially we're going to have to keep testing every 4-6 weeks until everything stabilises, but she's not sure how long that will take considering in two months I have swung so wildly from one end of the spectrum to the other. But at least we're on the right track now......

[MantaRay]

That's great that you have an answer Sarah. I hope it behaves for you now.

[BellyBelly]

What a relief for you Sarah... being a mystery sucks so much!!! Fingers crossed it's all up from here and you get some results really soon x

[Schmickers]

What a relief it must be to finally put a name to your health problems.

Sounds like you'll be pretty busy managing it, but at least now you'll know what you're managing and be able to put a plan in place.

[Antheia]

So glad they finally have a diagnosis for you.

[Janie]

What a relief Sarah! You know, I have feeling that Hashimoto's is what Bec has? She might be able to give you some advice. (Sorry if I'm wrong Bec!).

Good luck with managing your condition. It sounds as though you ahve a great specialist though

[Rouge]

I got your sms when I was at the clinic today and freaked, told the Dr who I was with and she said to tell you its all good and totally managable (its just finding the right treatment etc). Completely put my mind at ease as I was freaking out *just a tad* SO that is GOOD news

[~shazz~]

my husband has this sarah... totally managable ( lol when you remember to take your meds which he forget to do all the time )

[paradise lost]

YAAAAY a diagnosis!!! And BOOOOO it's Hashi's....

I have Hashi's, was dx in December 2006. I too had a post-partum bit of hyper (4-6months post-partum) then massive hypo (7-9 months p[ost-partum). It only happened once, so you might be equally lucky and have no more swings. The 6-weekly testing is a pain in the AZZ (arm actually...) but i settled by about March 2007 (when DD was nearly 1) and have been on the same doseage since then. My TSH is a tiny bit high (high end of normal) for ttc, so i'll need to see if my doctor wants to do anything about it before we ttc, but other than that i am now onto annual testing unless i get specific symptoms.

It sucks that my body is eating itself, but i know it could be WAY worse.

You can ask me anything and if i know, you will.

Bx

[Jennifer13]

Good news that you have a diagnosis and it's something manageable. Hope things improve for you now!

How do the meds go with bfing?

[{sarah}]

Meds are fine with BF, essentially what I'm taking is just a synthetic version of the hormone my body isn't making enough of. I double checked that

[paradise lost]

Jennifer Oroxine is synthetic thyroxine (i take levothyroxine - same thing but generic brand due to NHSness) and it replaces what Sarah's body isn't making, so it is completely safe for bfing and might even improve her supply (i had undersupply of which my hypothyroidism was certainly a factor). Really, though the diagnosis is crappy (having to take meds forever) Hashi's is far more easily treated than Graves disease (which is the autoimmune disease with the opposite effect - makes your thyroid OVERactive) and has far fewer complications.

Sorry for butting in Sarah

Bx

ETA - LOL Sarah - JINX!!!!