Desperate and Need Advice

Goose00 · 07-23-2008, 08:50 PM

Please help, I am at the end of my rope and could use any advice anyone has.
I am 30 and last Nov. I went off the pill after 10 years in hopes of getting PG. In January of this year I was diagnosed with hypothryodism, with my primary symptom being tingling in my hands and feet. My period was also irregular (got one in Dec. but then nothing in Jan.) and I wasn't pg. TSH was 15.9 at that time.
Anyway, I started on 50MCG of synthroid, which brought me to 6.77, then 75MCG, which brought me to .15, then alternating 50 and 75MCG, which brought me down further to .005 with that test being done 6 weeks ago. For the last 6 weeks I've been taking 50MCG again, and now my TSH is all the way up to 19.4! This has all been treatment through my primary care dr.
Meanwhile, I have not been getting my period on my own (using provera to start every 2 months) and ob/gyn diagnosed PCOS by process of elimination since weight, FSH and Prolactin are normal. My cycles were 37-38 days before the pill so this makes sense. Dr. says I will need to start clomid to conceive but I'm waiting for TSH to be regulated first but that doesn't seem like its going to happen since I'm all over the place.
I'm at the end of my rope. Please tell me what I should do next. I think its time to see a specialist. Do I see a regular endocrinologist or a reproductive endocrinologist? Has anyone else been through this? I am going crazy.

Ramblinjeep · 07-24-2008, 12:22 AM

I tried taking Synthroid, but it did nothing for me... I had the same problems with my TSH going up and down. I switched to Armour Thyroid, but I realize that it may not be for everyone. I would definitely ask for a full thyroid panel, including T3 and T4... if your body is having difficulty converting T3 to T4 (which is what you actually use), you might need to be on T4 as well. Good luck!!

Victoria070505 · 07-25-2008, 02:23 PM

have you been checked for hashimotos thyroiditis? It can cause fluctuations in your TSH level.

BeautifulMess · 08-02-2008, 04:56 PM

Personally, I found the RE to be more thorough than the regular endo. I wasn't a big fan of that particular endo, though, so maybe that doesn't apply to you. But after years of being told that my thyroid was normal, my RE was the first doctore to even test my TSH in addition to the T3 and T4.

Especially if you are TTC, the RE can help explore any and all avenues that might be right for your specific situation. Just my opinion!

Black Lilly · 08-02-2008, 06:23 PM

I am so very sorry to hear about all your troubles. And, it does sounds to me like you need to get yourself to a specialist - pronto. The Synthroid medication is a replacement for your T4 hormone. I do not understand why they would lower your medication, change your medication around so casually. It's not a medication that you mess around with.

The doctors should not be changing your thyroid medication levels or testing levels more than every 6 weeks. That must be causing you to spin on your head. I would be surprised if you have any energy at all. The medication should not be shifted around like you wrote about. It can make YOU very ill.

I don't have a lot of hope to offer you as I am on my own bitter journey with PCO and hypothyroidism/Hashimoto's. Please go to this web site (http://www.realthyroidhelp.com) and read as much as you can in order to find out what might be happening to you. You are going to find out very quickly that you need to be your own advocate. Please please please go to the web site. You will be glad you did.

Also, I read that the doc diagnosed PCOS, but it didn't sound for certain to me. Be very careful about accepting this diagnosis. There could be plenty of other things going on with you instead. Consider slowing things down and really getting a handle on what is going on. Your health is worth it.

Good luck to you! and best wishes.

Black Lilly · 08-02-2008, 06:30 PM

Forgot to mention a very important piece - there are specialties within endocrinology. Each endocrinologist will treat you based on their frame of reference. I would not go to a reproductive endo yet, but start by researching endos who specialize in thyroid. There are many who also specialize in diabetes and that might not be what you need, either.

Please go to the web site I listed. You can get lots of support there and meet folks who have been in your situation. I know how awful you feel and how crazy you feel. You are not alone!

Roxielady · 08-07-2008, 08:11 PM

I was dx by my primary doctor with Hoshimoto's when we first began ttc #1. I had no other symptoms except a long cycle. Later I was also DX with PCOS and Insulin Resistance. I was DX in early October and began seeing a RE by June, however I didn't get pregnant until the following July. I think what is most important is making sure your levels are stable before pushing forward with a pregnancy. As soon as you do become pregnant they should immediately increase your thyroid meds. This is now a standard practice as your levels go up due to the hormones as it can be harmful to the baby (at least that's what my RE told me at the beginning of my second pregnancy). It can take time to get your levels stable. Best of luck to you.