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

My doctor has decided this morning that I am a medical mystery for him LOL!! A year ago I was diagnosed with hypothyroidism & was put on medication to control it. The next two blood tests came up as normal whilst on the medication. Then a few weeks ago my blood tests said my thyroid was extremely overactive. I went off the meds to see if they were causing it but now this morning I have been diagnosed with hyperthyroidism. My doctor hs never seen it happen before & is baffled so now I have to go see an endocrinoogist to figure out what on earth is going on.

Has anyone else had this happen?? I know it's common to go from overactive to underactive but I can't find anything to explain why I would go the other way. The medication wasn't helping the situation, but it wasn't causing it either....

Can't help you with this one Sarah - but we always knew you were special ;)

LOL thanks SS :D

Wow... I haven't heard of this before at all. I have known it to happen in a cat once at work. We've also had diabetics go the other way around before...

:hug: I hope they find some rhyme and reason to this. It must be frustrating! I know with all my medical issues this year its been frustrating trying to find answers. My body has really taken a tumble since having Jovie, nothing wants to work the right way anymore!!

Not sure if it's any help, but good ol' Wiki says:

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Hypothyroidism can result from postpartum thyroiditis, a condition that affects about 5% of all women within a year after giving birth. The first phase is typically hyperthyroidism. Then, the thyroid either returns to normal or a woman develops hypothyroidism. Of those women who experience hypothyroidism associated with postpartum thyroiditis, one in five will develop permanent hypothyroidism requiring life-long treatment.

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So apparently after giving birth you might have hyperthyroidism that turns into hypothyroidism, which you already know you have. Does that help? (Doesn't mean you're not still special though!)

Hmmm very interesting Jen. I googled & couldn't come up with anything, so thanks for that :D

Since your google is not cooperating I tried postpartum hypothyroidism and got the Thyroid Assoc in Australia - they have an article on this: Post Partum Thyroiditis.

Yay thank you :D

ETA: Just looking at it, the timing is all wrong. If it was post partum thyroiditis I should either be over it or onto the hypothyroid part of it by now (being 4 months post partum). I will keep this in mind though for my specialist appointment in two weeks. My biggest concern i if they want to do the radioactive iodine test. My friend had thyroid cancer a few years ago & had to the the RAI test a few weeks ago, she wasn't allowed near anybody (incl not sleeping in the same bed as her fiance) for a week & then gradually built up contact with people over the next week. How would I be able to do that????? No BF Juliette & I wouldn't be allowed near either kids for at least 10 days minimum. Let's just hope it doesn't get to that.

Bugger about it getting worse and not better for you hun :hug:

Maybe even though you're out of the typical 'window' for it, that they may not be hard and fast rules for having it kwim? Definately something there for you to ask about in the very least. I am crossing fingers that you wont have to do the test either - I couldn't imagine how hard it would be for you to not be able to feed miss J.

I had Thyroiditis a few years ago and would go from over-active to under-active.
Thyroiditis is caused by a virus in the thyroid. This was dx as my thyroid levels were not in the norm.
I had to have a radioactive test to check out my thyroid and all came clear so that it why it was dx as thyroiditis rather than hyper or hypo. I didnt have to stay away from my kids etc afterwards, but could see why b/f could be an issue. The dye test told be that it was a virus that caused the issues. It was either going to be a virus, graves disease or a goitter that was the culprit! As no sign of the last two- it was seen to be a virus.

Thyroiditis is a virus that attacks the thyoid. I was under a endochronoloigst for 18 months whilst i was suffering with it. Regular monitoring of levels, which fortuately didnt get bad enough to go on meds, but my levels did swing from one end of the scale, to the other.

Is it possible that your thyroid condidtion has been caused by a virus as well??
The dye test is the only way of knowing why your thyroid goes hyper or hypo unfortunately, so maybe is maintenance time until you stop b/f.

Good luck and stay well!!

odette

Thank so much Odette, I'm glad to know I'm not really such a mystery after all if someone else has had the same thing ;) I have no idea if it would have been caused by a virus, I don't recall being sick in August last year, being poked & prodded for IVF, but not any viruses that I can recall. I'm glad to hear you were allowed to be near the kids after the RAI test, that was my biggest worry, though maybe they did a stronger version for my friend because they were checking if she was still in remission from thyroid cancer.

Sarah, This happened to my mum. She was on meds for years for Hypothyroidism and then we noticed she had a goitor. So she was rechecked and had developed Hyperthyroidism. She had to have the goitor removed and most of her thyroid. So she's on meds again. But the Dr said it was very unusual. But it does happen very occasionally. Her mum had the same thing many years ago. So can't be THAT uncommon. U r very special hon.....and I hope things improve for u....*hugs*

Just had my endocrinologist appointment this morning & I remain a mystery *sigh*

She thought it was highly unikely to be post partum thyroiditis because of the time frame, but didn't rule it out entirely. She said it may be Graves Disease, so we're checking that at the moment. She said she had seen in literature some people can just fluctuate for no apparent reason, but she had never seen a case of it over 20 years. That'd be right, I'll be her first case LOL! The bonus was that she flat out refuses to do the RAI test while I'm breastfeeding, she said the other diagnostic tests will give a pretty good picture of what's happening without messing with breastfeeding, so yay for that!

So now I've had a million vials of blood drawn today & I get some of the results on Tuesday. Then in five weeks I have to have another lots of bloods taken & another appointment in six weeks. Until we can figure out what's happening I'll be having blood tests every four weeks, which I am just so thrilled about as you can imagine.

Oh you poor thing with all the blood tests. But that is fantastic news about the bfing. Sounds like you have a reallly good specialist there.

I hope she is able to find some answers for you so you don't totally turn into a pin cushion.

Yuck at all the blood tests! But hopfully they figure out what's happening.

See Sarah, you are so unique there's been no one like you in 20 years!

Hope the tests come back with something definitive... Not that you shouldn't remain a woman of mystery if you so want to!

How did your resutls go Sarah?

I've just been diagnosed with postpartum thyroiditis and I'm waiting for AF to return, very odd since I haven't done a night feed in months and we are down to 1 BF a day.

Has AF returned for you?

I'm not in a hurry TTC#2 but I'd like to know what is happening with my cycle! Unfortunately I just have to wait it out and have repeat bloods in a months time.

SG

Still no firm diagnosis at this stage because my appointment last week had to be rescheduled due to an emergency. What emergency goes on for two weeks I don't know, but anyway my appointment is now next week.

It's strange to be diagnosed with Postpartum Thyroiditis at 7 months post birth Shoegal, it's usually gone or starting to go within three months. Have they said you're over or under active?

No AF here as yet either, but I am fully breastfeeding with generally one feed overnight & sometimes up to three.

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

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 :rolleyes:

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

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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

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. ;)

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.

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. :D

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......

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

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

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.

So glad they finally have a diagnosis for you. :hug:

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 :)

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* :p SO that is GOOD news :D :hug:

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

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.

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

Bx

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?

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 ;)

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!!!!

ohhhh on the Hashi's diagnosis!!! I hope getting on top of it helps. :hug:

I was told Matilda had Hashimoto's a year ago & when we did the repeat bloods she was within normal limits. So we are going yearly for blood tests just to keep an eye on those levels jic. It must have been thyroiditis for her... I don't know.

That's great you have a diagnosis Sarah, hope it is all going okay.

SG
xo

Yay at nolonger being mystery woman. Very good to hear that they are finally sorting it all out for you.

Hi Sarah

Wow i am glad that they figured out what was wrong in the end. I do know how you feel not knowing and fearing the worse i was diagnosed with Hashimoto's Disease about 2 months ago.
We should start up our own little club!!!!!!!!!!!!!!

Hope you feel better soon
Nikki