Levels battle and trying to conceive

Hi Lfaye90 

I can't comment on trying for a baby, but I wanted to maybe add some advice for dosage.  I am very sensitive to T4 (thyroxine) too, that is never easy.  What dose are you on and now much of a reduction have you made before?  When I have reduced, I have done it in very small amounts, 25mcgs.  Not sure if you have done this, it might be an idea to try.  

I am sure someone with pregnancy advice will come along, as there have been a few people in this situation before. 

All the best

Lolabean :) 

Hi L.

I was having trouble to conceive and had to increase my TSH to "normal levels" temporarily (2 years due to other issues). During this time I had bloods every 3 months. Once I fell pregnant my dose was increased again and tsh dropped to 0.1. Here in Australia we see an endocrinologist  not an oncologist. Suppressed TSH can cause fertility issues. I suggest you get a referral to an endocrinologist and get some advice. 

Good luck on your journey. 

TL

Hi Lolabean and TL, 

LB thanks for the advice on making really minor changes to my thyroxine. That’s what we’ve been trying for nearly 6 months now, a change of just 25mcg seems to send me one way or the other quite drastically. I’ve just had to drop 25mcg to see if that brings my t4 down but keeps me suppressed. 

TL thanks for sharing your story with me. That’s exactly my worry is that we’re spending all this time trying to suppress me, when actually we should be doing to opposite to help us to conceive. My consultant didn’t seem to think any of this would be a problem for us. Next stop is a trip to the Drs to try and get some help. 

At a loss! 

Thanks

Lauren

Lauren the difference is in UK I was under an oncologist and here in OZ I'm under an endocrinologist. The endo will be more clued in to the hormonal side and fertility. I suggest trying to find an endocrinologist that understands both fertility and thyroid cancer. I had bloods and was seen every 3 months during the time my TSH was increased. Always consult your oncologist before making any changes.

TL

Hi everyone, 

I'm hoping you can help me. I've been battling for 18 months, since my thyroidectomy, to get the balance between suppression and t4 right. My dosage has been changed every 8 weeks since Jan18. Results 6 weeks ago were TSH 0.06 and T4 27.6 when my dose was 125, 5 days a week and 150, 2 days a week.  When these results came through, my dose was dropped  by my consultant to 125mcg 6 days a week and 150 1 day a week. I have another blood test in 2 weeks time.  My consultant says I am just very sensitive to thyroxine.

Earlier this year, my dose was dropped to 125 every day, but this resulted in a tsh of 1.34. 

I am at the point of desperation. I have just been sent home from work as i was shaking uncontrollably, sweating, racing heart and nearly passed out in the office. Very embarrassing! Please tell me there is hope. Is there alternative medication I could explore? My consultant is hoping that the latest drop will keep me suppressed, but also lower my t4 enough to stop the symptoms. But i'm now 6 weeks into the new dose and still having severe symptoms. 

Could they risk me not being quite to suppressed? I imagine they won't let me do this because i'm 28 and have already had cancer twice, so am considered high risk, but I just want to feel well. The default position from my gp and consultant is to see what the results show in 2 weeks. 

Any help or advice much appreciated

L 

xx

Heya, 

Well, your previous breast cancer won't come into the treatment of your thyroid cancer. So I doubt that will be a consideration when they are trying to keep you suppressed as there's no link regarding how the two grow and act.

Your suppression level, and the length of time they want you suppressed to the max, is determined by the size, encapsulation, type, spread, etc of the thyroid cancer. 

How has your TG been over the last 18 months? Has it been stable? If it has, then you could ask about lifting the suppression level to around 1. The other thing you could ask about is a low dose beta blocker to help you deal with the side effects of the high T4 levels you've got. 

Good luck with it all, and do keep in touch! 

Lass

Xx