Thyroid help please!

[treeoflife3]

I've been diagnosed with hypothyroidism after talking to my doctor about having minor symptoms as well as a STRONG family history of hypothyroidism. My mom also specifically has hashimoto's.

He refused to test more than than just TSH saying that even if I had hashi's, the treatment would still be synthroid. I tested at above 7 first time around and he started me on .025mg. I'm actually on the generic as my insurance pays for that first. A month later, I was testing at 3.5 and he said he wanted to keep me on the same dosage for another two months as I'm now in the normal range (although I thought the new normal was lower?) to see if there is any other change. This after I told him my mom's normal is at 1. any slight difference and she can feel it immediately. I'm not her, but I usually follow her pretty closely health wise.

At the same time for being tested for hypothyroidism, I also had my hormone levels checked. I literally have NO sex drive at all (to the point where I am grossed out by sex and don't even have a desire to joke about it. This is a HUGE change from 2-3 years ago where I was EXTREMELY sexual.) I started losing my sex drive a few months before being pregnant but after birth is when it disappeared completely. He said my regular hormone levels were 'just fine/normal' (but didn't share what they were or anything) and didn't feel the need to pursue it further because of the hypothyroidism thing.

I have a month to go til my next visit and I still feel no different than I did before starting medication. I've recently been told by a therapist that I am a poster child for adult ADD and should talk to a doctor about treatment (beyond therapy) so I made an appointment for tomorrow. I also want to talk to the doctor about how I feel NO different (not just sex wise, but also my other minor symptoms) and think I should get a FULL panel testing like I wanted in the first place.

My problem is, I'm not sure where to go after getting a full panel or how to insist that I should get one. I know TSH isn't a very accurate measure but I don't really understand. I'm getting overwhelmed and confused trying to find answers about what exactly I should do. I've also been reading about different types of medication as well as supplements and even foods to avoid and I just feel completely over my head.

I'm not sure if I should just ask for a referral to an endo because he doesn't seem to know much about thyroid stuff or if I should just basically tell him what I want? I don't know what I want! haha

basically... could anyone help me out and give a super dumbed down version of what I need to do/ask for and what it all means? I KNOW I'm not healthy, and honestly, if the sex thing is just the thyroid, it is affecting my marriage. I can't continue doing what I am doing simply because 'well I'm in normal range now.' It just isn't the answer.

[eireann]

i would go to stopthethyroidmadness.com. there is so much info and it may set your mind at ease or help get some perspective.
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[treeoflife3]

I've looked at that site, but it just put me in circles unsure of what to do. It gave such a HUGE list of things to test and also seemed to emphasize home tests for some things (which, I can't afford) but it didn't really leave me feeling like I understand why I should test those things in relation to what the levels should be and what to do once I do know what my levels are. It definitely didn't help me figure out how to insist to my doctor that I need all that testing when he won't even test for hashi's.

I felt like the whole site was just pushing using armour which I sincerely doubt my doctor knows much about. He is an internalist and a pediatrician and very old school but I don't have very many options unless I get a referral and possibly drive pretty far for an endo which from what I hear isn't necessarily better. I'd rather just have a bigger hand in deciding what happens and understanding results than dealing with driving around and possibly to someone who isn't any better.

I guess I don't know what I'm looking for here as I know that is one of the main go to sites for hypothyroidism but I just feel more confused. I know there are a bunch of things to test and I know supplementing some things like selenium is a good idea but I don't know WHY or what that would tell me or how to explain any of that to a doctor who is happy to just test TSH and be okay with levels at 3.5 despite symptoms.

[simcon]

I see an endocrinologist, and am on Synthroid for Hashimoto's--I'm not sure that you'd get a lot more with an endocrinologist, except perhaps for an updated sense of what the "normal" range is--here on an NIH site, that would be under 3 for a TSH level: http://www.nlm.nih.gov/medlineplus/e...cle/003684.htm

But maybe you could just print out some research for your doctor?

My endocrinologist does test for T4 and T3 initially, and also tested for antibodies, which I had, and which were increasing--so his diagnosis was Hashimoto's, but that didn't affect the treatment in any way (just let me know that I should expect the dosage to increase until it was pretty much full replacement of the thyroid hormone).

I had high TSH levels that were diagnosed as part of a fertility workup, and never had any symptoms--the Synthroid is working fine for me to keep my levels "normal" (the generic did not). Since this all worked for me, and since I didn't actually have any symptoms in any case (at a TSH level of 12+ or so), I didn't explore many alternate healing practices--I found the sites confusing too. And much of the information seems to be geared as much or more for people who have symptoms but not the blood levels associated with thyroid problems, and that was never my situation.

If you are still having symptoms, it seems that your current treatment is not working for you, and hopefully you can convince your doctor to revisit your treatment plan (and if not, find another health care professional--endocrinologist or not, you need someone who will listen to you and be up to date on current research--either mainstream or alternative!)

Good luck!

[mom61508]

I kind of skimmed thru the thread b so I'm not sure If this was already mentioned but have you considered seeing another HCP? Perhaps a naturopath? I know a ND is more expensive but depending on the insurance you could reimbursed 80%. WE get reimbursed 80% for out appts which is awesome!.Worth a shot!

[leafwood]

i have hashi's (been treated since I was 18). please see an endo. they, IME, are great. more supportive, more savvy. you will get more bloods and even an U/S if necessary. my level feels good between .08-2. even 2.2 brings on symptoms. sex drive is a huge issue when my TSH is too high so there is hope there (promise!).

[beanma]

I also wanted to mention that nursing can lower libido. There are many threads here about that.

I am on Levothyroxine (generic synthroid) and it has worked as well or better for me than Synthroid. I think that he probably just wants to make sure that your TSH is not going down over time. The levels can fluctuate a lot and he probably just wants to make sure you have enough in your system for long enough for it to have stopped fluctuating. On your next visit I'm sure he'll retest. I'd tell him that you don't feel like your fatigue and libido have changed much and reiterate that you'd like to aim for 1.

Low thyroid can also cause high blood pressure and high cholesterol so it's a good thing to get as close to optimal as possible.

I have never seen an endo and my PCPs have always been great with my hypo. It's really very common and unless you've got something funky going on a PCP can often do a fine job of testing and treating. My new doctor (left the birth ctr midwives, 5 yrs after my last baby was born) didn't bat an eye when I suggested trying to aim for a TSH of 1. She just said, "sure".

If he's not responsive on your next visit, though, asking for a referral to an endo might be the way to go.

[treeoflife3]

Thanks for all the replies everyone I appreciate that.

When I went in today he seemed very reluctant to test further yet but agreed to do so and see me again wednesday. He really didn't want to do a full panel saying he can only treat based on TSH but at least he is on board now with at minimum lowering my TSH even more. I figure baby steps so I'm going to go ahead and go with that this one last time and see where I am again wednesday with most likely a raise on my dosage and we can reevaluate after a while on that.

As for nursing lowering libido, that started happening a couple months after marriage and a few before conception. I was actually going to get tested then for something but never got to it. Nursing may very well be making this worse but it definitely isn't the cause. Honestly though for now I'd rather nurse than have sex haha. Not sure my husband would like to hear that.... I'm aiming for best of both worlds!

[kiwiva]

Thyroid is such a pain! If your doc is only testing TSH he doesn't know enough about thyroid problems to treat you properly. Whether it's an endo you need or another internist, it depends. I've seen a couple endos, a couple family docs/internists and a gyn who specialized in thyroid. It was a pain to get it sorted out. It depends on the doc. A good endo finally sorted me out and then last year I also saw a holistic doc who had a few recommendations, including adding B vitamins, selenium and another thyroid supplement (bovine derived). I also do acupuncture now, which helps.

Normal TSH, I believe is considered under 3. But in a healthy population the average will be around 1.5, so relative to that 3 is high. TSH really doesn't tell the story though, it is a screening tool. It doesn't actually measure any actual thryroid hormone. It is less helpful when you are on meds, and for me, for example my TSH is way down under 1 if my T4 is in range. So not so helpful on an ongoing basis. If I were treated on TSH alone, I would be considered hyper at this point and I'm not. He needs to test the thyroid hormones.

It can be slow to get to the right dosage. You do have to give it time to restest. But he should, at least be looking at your T4 level, since that is what you are taking (synthroid or whatever). You are right he will probably have no interest in Armour. The first doc I saw prescribed that (bc she was on it, I think) and an endo took me off it. I've been on synthroid for several years now and it works okay.

I'd add selenium probably, that helps with conversion of T3 to T4 (I think).

There are several foods you should avoid (at least in excess). Google "goitrogenic food" for a list, but soy is a big one, also walnuts, cruciferous veggies (raw), um I forget what else off the top of my head. I cannot eat soy at all, it gives me a "hangover" but the other foods in moderation aren't an issue for me, so it depends.

I know it can be very overwhelming, especially if you have brain fog from the low thryoid! You should give it some time, but if you really are not feeling any improvement, you probably need a higher dose (25 mcg is low). There is often not an instant fix but you should be noticing improvement. So trust yourself and if you don't feel confident in your doc, insist on a referral from him or see if you can find a recommendation in your area. Thyroid.about.com, I think they have a recommendation list by area. I saw a couple docs from there and was happy with one, unhappy with the other. At least it's somewhere to start and it's not just a list, you can see the comment of the person recommending. Also check out the tribe area and ask if anyone in your area can refer you.

[mom61508]

Originally Posted by treeoflife3

Thanks for all the replies everyone I appreciate that.

When I went in today he seemed very reluctant to test further yet but agreed to do so and see me again wednesday. He really didn't want to do a full panel saying he can only treat based on TSH but at least he is on board now with at minimum lowering my TSH even more. I figure baby steps so I'm going to go ahead and go with that this one last time and see where I am again wednesday with most likely a raise on my dosage and we can reevaluate after a while on that.

As for nursing lowering libido, that started happening a couple months after marriage and a few before conception. I was actually going to get tested then for something but never got to it. Nursing may very well be making this worse but it definitely isn't the cause. Honestly though for now I'd rather nurse than have sex haha. Not sure my husband would like to hear that.... I'm aiming for best of both worlds!

since your having thyroid issues it fair to say you can assume you have adrenal issues. That will also cause a low libido especially since you were feeling that way pre-baby. have you looked into adrenal fatigue at all? I think for your sake If you can I would look for a ND as they recognize adrenal fatigue as a serious issue and will automatically get the labs you need done without you having to repeatedly ask. As far as an Endo goes I'm not sure how they see adrenal fatigue. I also have hashis but my thyroid has been stable for quite sometime but the adrenals are little bit more tricky I find. I started out with a MD so I know how frustrating that can be. I hope you can get the treatment you deserve. And I remember wanting to nurse instead of have sex too

[beanma]

I also wanted to mention that you might want to think about supplementing with vitamin D. Your doc can check your levels, too. It can make a big difference in how I feel.

[quelindo]

If you are in the Milwaukee area I have a FABULOUS endo I would love to recommend. My sister, mother and I all see and love her. Just PM me.

[beanma]

tree, just wanted to point out this thread on low libido while breastfeeding:
http://www.mothering.com/discussions....php?t=1234529 . So you're not alone in that department and if breastfeeding isn't the cause of your troubles on that front your nursing hormones may be playing into it at least.