The steroid junkies' perfectly unscientific medical trial

[Amos2009]

Thanks Hopeful....I was pretty psyched for a few days with my symptoms, but after today's BFN, I'm not holding out a lot of hope.

 

[petitpas]

Me, too
Hoping you can try the effectiveness of the steroids very soon!

 

[lexi374]

Hi ladies im still stalking you just waiting for that damn bfp so i can officially join you all on the steroids! Had a big temp drop today so looks like im out this cycle... on to the next

Do you think that the nk cells make it harder for me to get bfp/ implantation? Does anyone know of anything i can take in the meantime to lower them? (Apart from steroids, as im not supposed to take them til bfp)

Fili sorry to read about your latest pregnancy

Pip and hopeful glad you are doing well gives us hope

to all the other ladies

 

[leylak]

I had used that conversion page Doc put me on 0.5 mg dex

Wow leylak, that does sound pretty low. Have you spoken to your doc about it?
I only know two prednisolone treatment protocols. One prescribes 20mg from bfp, the other prescribes 25mg from ovulation. Maybe you could take that info to your doctor and ask why your dose is so much lower? Maybe dexamethasone has a different treatment dose?

Idk much about dex. I haven't talked about the dose yet. I didn't get my NK levels checked, I asked the doc but he said it is a costly test and treatment (I think he meant the intralipid treatment). So he is focusing on lowering my thyroid antibodies. I am on a break from monthly visits to the doc. I want to take some time until IUI. I will wait until I get a normal (<2) TSH. I will increase my dex dose again after ovulation. My aunt (ob&gyn) advised me to start baby asprin then. This will be sth new this cycle.

 

[Amber3]

Hi there
I have a question for you guys. I am interesting in trying out steroids because nothing else has seemed to work for me;/
I hope you will share with me what exactly what medicine you took (and did you have succes?) and were you tested for immunological issues before you started your treatment or did you just try it out (which is what I am considering)?
I hope you will advise me guys,
Best wishes,
Amber

 

[Hope39]

I had used that conversion page Doc put me on 0.5 mg dex

Wow leylak, that does sound pretty low. Have you spoken to your doc about it?
I only know two prednisolone treatment protocols. One prescribes 20mg from bfp, the other prescribes 25mg from ovulation. Maybe you could take that info to your doctor and ask why your dose is so much lower? Maybe dexamethasone has a different treatment dose?

Idk much about dex. I haven't talked about the dose yet. I didn't get my NK levels checked, I asked the doc but he said it is a costly test and treatment (I think he meant the intralipid treatment). So he is focusing on lowering my thyroid antibodies. I am on a break from monthly visits to the doc. I want to take some time until IUI. I will wait until I get a normal (<2) TSH. I will increase my dex dose again after ovulation. My aunt (ob&gyn) advised me to start baby asprin then. This will be sth new this cycle.

Leylak, how is your doc getting your antibodies down and what was your antibody level, my thyroid antibodies are 417! Apparently normal is 30


My recurrent miscarriage consultant told me of a patient of hers that had thyroid antibodies and they were treating her with just thyroxine. She managed to make it to 8.5 weeks which was the furthest she had ever got, i'll get an update on her when i go back in feb

Wouldn't it be great if it was my thyroid that has caused all the miscarriages that i have had and being on thyroxine cures it all

 

[petitpas]

Thyroid issues really are a cause of recurrent miscarriages so it is important to get that under control. It is totally feasible that sorting that out might fix your problem.

Amber, I was tested before having treatment. I understand that the tests are not available everywhere but do you have a doctor on board to supervise your treatment when you are in it?

 

[Hope39]

My thyroid tsh was 1.3 at beginning of december so all sorted for me now, didn't take long to get it to that

I will have another blood test this week to check it is still ok

 

[filipenko32]

That's great hope, what a difference!

pip, can you update my angel status on the front page? Let's hope it changes in a few months time! X

 

[petitpas]

Oh fili, I wish I didn't have to
I have everything crossed that you will be back in preggo/hope-land soon.

Did I get that right that you will be trying your next pregnancy off steroids? I'll update the front page for now but let me know if I'm wrong. In the meantime, please don't stop cold turkey and wean yourself off slowly. Cold turkey gives Ouchy Ouchy headaches!

 

[filipenko32]

I weaned down to 10mg so stopped now as they interfere with the mc pills. And feel fine. All in all I had an easy time with the steroids aside from the hunger! Not sure whether I will try them again, probably going to talk to dr s about it at least.

 

[Amber3]

I have a fertility doctor but we are in two different countris which makes everything complicated (recently I have not heard back from him about his thoughts on me trying out steroids)
I contacted an immunological specialist in NY Dr. Braverman and shortly told him about my story. He thinks I have immunological issues and would have me as a patient it seems and do a lot of tests and then treatment. However I am afraid that all that stuff is going to be very very expensive, so if my good old doctor would support that I just try out steroids on my own first, then I think I would do that.
Amber

 

[beachlover1]

hi all

Filli im really sorry to hear your news!!

AMOS.....Hello AGAIN!!!! im soooooooo hoping its your turn soon...its been a long journey.

Im feeling fine on the "roids" wouldnt know i was on them TBH. i guess after my last high dosage this 20mg feels like a dream! feel sick a bit, really tired, but thats it really. i am eating ALOT!! Look about 4 months preggers already.....BLOATED!!!! Im meant to be scanned in a few days but as im in NZ thats not gonna happen, so im just hoping and praying all is well, I hate this stage sooooo much. Lots of the usual stretchy cramps, so we shall see. I was told the steroids would/may mask symptoms of pregs.....any one else hear this??

I really hope everyone is ok....and has good news soon xxx

 

[Amos2009]

BEACH!!! What's going on girly??? You preggers again? TTC? Where are you in your journey? How's the little one?

 

[beachlover1]

hey Amos, yep im perggers again. Diagnosed with high NKs after another MC back in July. Now 6 weeks and have about 2 weeks to go til my "dreaded" stage!!! on the steroids so we shall see. really nervous!!

LO is keeping me v busy though....18 months old now!

How are you?? great to see you back.....its been a rough old time for you xx

 

[leylak]

Idk much about dex. I haven't talked about the dose yet. I didn't get my NK levels checked, I asked the doc but he said it is a costly test and treatment (I think he meant the intralipid treatment). So he is focusing on lowering my thyroid antibodies. I am on a break from monthly visits to the doc. I want to take some time until IUI. I will wait until I get a normal (<2) TSH. I will increase my dex dose again after ovulation. My aunt (ob&gyn) advised me to start baby asprin then. This will be sth new this cycle.

Leylak, how is your doc getting your antibodies down and what was your antibody level, my thyroid antibodies are 417! Apparently normal is 30


My recurrent miscarriage consultant told me of a patient of hers that had thyroid antibodies and they were treating her with just thyroxine. She managed to make it to 8.5 weeks which was the furthest she had ever got, i'll get an update on her when i go back in feb

Wouldn't it be great if it was my thyroid that has caused all the miscarriages that i have had and being on thyroxine cures it all

When I started dex in september, my anti TPO was 297 and anti Tg was 475. I started gluten free diet then. In november, anti TPO was 262 and anti Tg was 233. Normal for the lab is 57 and 64 respectively. Dexamethasone and/or gluten free diet decreased the levels, I think. My TSH levels increased from 2.7 to 3.5 in the mean time in spite of thyroxine. Doc upped my thy. dose after the last results and I don't know how it is now. TSH level is important for pregnancy and conception but I don't know what my problem is. When I conceived, my TSH was below 2. on the day of MC (D&C), it was still below 2, so I don't think my MC was caused by low thyroid. But now I have trouble conceiving. Maybe it is because of TSH levels
I know that many patients with hashi don't get steroids and they have no problems about conceiving and carrying once their TSH levels are under control. How is your TSH running? I hope thyroxine cures it all for you!

 

[Hope39]

Hi Leylak

Thanks for replying. Apparently i haven't got hashimoto's yet, doctor told me wrong, but i do have auto immune thyroid disease (my T4 was ok so its not hashimoto's). It all confuses me to be honest

I was reading about dex yesterday actually, i had not heard of it before until a lady from b&b sent me a link about thyroid antibodies

Mine were 417 when i got tested (think i said that already) and my tsh is now 1.3 so tsh is fine

I might look into the gluten free diet, i started a diet last week and have lost 5lb so far, i have only had one slice of bread all week too so i can cope without bread. Smoothies with hemp milk are going down a treat in the mornings and hemp products are really good for you (tastes rank on its own, i have never tasted anything so disgusting in all my life but stick some frozen fruit, banana, ground almonds and pumpkin seeds in and its lush)

I might mention the dex to my consultant when i see her in feb

Thanks

 

[leylak]

Hope,
As far as I know, hashimoto's is a throid auto immune disease where anti TPO and anti TG (thyroid antibodies) are above upper limit. The level of the TSH and T4 are irrelevant. Once your body eats up your thyroid gland, TSH increases and t4 decreases. But before then, you already have Hashimoto's. My T4 level is fine too, and my TSH has increased only this year. But apparently, I have had thyroid antibodies for a long time.

If you have any link regarding the use of Dex for Hashimoto's, I would like to see it. Because my internet search showed that steroids are used for Hashimoto's encephalopathy, but I couldn't find anything about steroid for ladies TTC

 

[busybeaver]

Hi Hope, Leylak,

Hope you don't mind, just wanted to add my own 2 cents as a fellow hashi.

Leylak, you ares right; if your free values (FT4 and FT3) are still within the reference range, but you have a detectable level of anti-bodies, you have so called "subclinical thyroiditis". Can still affect you during pregnancy, so needs to be looked at - which your docs thankfully do.

I guess you know about the studies that indicate a larger risk of miscarriage if you have thyroid anti-bodies. It could also be that the anti-bodies are not related, just a sign that something else in your immune system is out of synch. There is quite a lot of info on the miscarriage research website Cant post the link as I dont have enough posts, yet.
Someone on the recurrent miscarriage thread posted it a while back and I found it incredibly useful.

Steroids are used to treat autoimmune diseases, which usually means getting rid of the anti-bodies, they are just not prescribed for Thyroiditis, as ANti Tg and TPO don't hurt. I think it is definitely worth a try!

Oh, and my GP recommended taking Selenium to bring them down- available in Hollands and Barretts. I am not sure it works, since I have not had my levels checked since I started.
Eating gluten free could help; I read that people with Autoimmune diseases can also develop an over-reaction to gluten.

Hope you find the right doses soon!!

 

[Amos2009]

hey Amos, yep im perggers again. Diagnosed with high NKs after another MC back in July. Now 6 weeks and have about 2 weeks to go til my "dreaded" stage!!! on the steroids so we shall see. really nervous!!

LO is keeping me v busy though....18 months old now!

How are you?? great to see you back.....its been a rough old time for you xx

Wow....already 18 months???? God, I've been here forever LOL

Congrats on your new pregnancy. I hope everything goes well.

And yes- rough journey for me. Giving it one more try this year before I turn 40 then I think it's time to quit.