RE Appt tomorrow ~ input appreciated

SharonO · 02-05-2003, 04:54 PM

Hi Ladies:

My last two TSH's were 4.19 and 4.96 (June and October.) My RE and I disagree about what to do about this.....he says a TSH of 4.96 is "Nothing to worry about" while I believe it is at least worthy of some additional investigation. In the months since my last visit we've really batted this around via email, and he has grudgingly agreed to a 6 week trial of synthroid, .075 mg per day. (to be extended only if the antibodies test comes back +.)

I have an appointment tomorrow and in addition to the antibodies test, I'm also telling him to run the T3 and T4. Are these tests suffient to detect a problem? I've also heard of "Free" T3/T4 and "Uptake", but I'm not sure what they do or if I really need them.

Also, is the dosage he suggests appropriate?

I've been worried about my initial TSH from way back in June, and want so much to reach a resolution one way or the other.

Any thoughts or suggestions welcome! Thanks.

JessicaE · 02-05-2003, 05:30 PM

Sharon,

Good for you for pressing your RE on this issue. A TSH that high is not at all good for TTC, and I don't know how he can say that it's nothing to worry about without also knowing your T3 and T4. At the very least, that kind of TSH merits further testing.

Your antibody, T3 and T4 levels should tell you a lot. Thyroid uptake is where they give you radioactive iodine and then take an x-ray to see how much iodine your thyroid is taking up. Obviously, it cannot be done while TTC. I don't think you need thyroid uptake anyhow, at least not until you know your T3, T4 and antibody results. The only times I've had uptake tests were when they suspected a nodule and when they suspected Grave's disease, neither of which sounds likely in your case.

As for the dosage of Synthroid, .075 actually sounds pretty high for a starting dose. Make sure they test you again in a month, and then again a month after that to be sure you don't go hyperthyroid.

Good luck tomorrow! It sounds like you've got a great handle on the situation.

Aubreyyyy · 02-05-2003, 06:08 PM

Sharon,
Your TSH is in the normal range of approx .35 to 5.5 (depending on the lab) but the normal/average person is between 1 to 2.
The T3 and T4 are not as important as the indictions of the TSH. The T3 and T4 can be normal and you caould still have a problem. My Dr told me that the acceptable range of the T4 is like 4.5 to 12 but a normal person is between 8 to 10. The T4 works opposite as the TSH in that as the TSH becomes High the T4 should be dropping.
My TSH was at 8.9 and my T4 was 5.8 and I just started cynthroid 4 days ago and have noticed an immediate improvement. I'm totally full of energy. I am on .150 mg per day. The dosage is based on weight so I wouldn't be concerned about the amount. I agree with Jessica E in that you should really press your Dr. My Gyno wanted me to wait 6 mo to a yr to be retested...I went back to my family Dr and he said start meds now so keep pressing. It can't hurt.
I hope I helped,
Ashley

bananasmom · 02-05-2003, 06:38 PM

Quote:

he has grudgingly agreed to a 6 week trial of synthroid, .075 mg per day. (to be extended only if the antibodies test comes back +.)

That's an odd statement to make, and I would question how much experience (or empathy) your doctor has for thyroid treatement. Having the antibodies is treated similarly, but not the same as hypothyroid. I'm sure you know all that, but I'm just saying that his statement is sort of a red flag. I guess he's just feeling that your TSH isn't worth treatment and that antibodies would be the only way he would.

Honestly, I would go for another doctor who is more open to treating and/or discussing your treatment.

Quote:

Also, is the dosage he suggests appropriate?

As Ashley mentioned, it's based on weight, as well as TSH. My aunt has a non-functioning thyroid and is very slim. She takes 75 mcg. I'm pretty heavy with Hashimoto's and an initial TSH of 112. I started off at 100mcg for a week and now take 150 mcg. My TSH is 2.64 now.

Quote:

I've been worried about my initial TSH from way back in June, and want so much to reach a resolution one way or the other.

Are you experiencing symptoms as well?

Quote:

4.5 to 12 but a normal person is between 8 to 10.

Ashley's talking about Total T4, as you mentioned, there are other tests... see if this helps you:

http://thyroid.about.com/library/how...yroid-test.htm

HTH!

SharonO · 02-05-2003, 08:23 PM

Thanks guys, for the support and super quick responses.

Jessica - Doh! Once you described the uptake test, I remembered it, as I had it done 6-7 yrs back. I have a "Thyroid Glossal Duct Cyst" and had to drink a liquid and then lay still while they scanned my neck to see if it was hot or cold (am I thinking of the right test?)...all that followed up by a couple of fine needle biopsies. After the FNA the cyst got small, so they didn't think it was worth taking out (it was non-cancerous, of course.) So, it is still there. The way it was explained to me, the glossal duct can contain a remnant of the thyroid, and can develop a cyst just like the regular thyroid can. Thanks for jogging my memory on this. My Dr. is aware of it, but it may be worth revisiting.

Ashley - How wonderful that you are feeling better, and so quickly! If you don't mind sharing, it would be interesting to know what sort of symptoms you had prior to starting meds.

BananasMom - TSH of 112! OMG! That really sounds sky-high. You must feel so much better now with treatment. I agree with you, a new doc, or at the least a second opinion.

My weight is up there (190's) so if the dose seems high, that's why. As for symptoms, I have plenty (hair loss, irregular cycles, memory problems, freezing cold - even to the touch and BBT's in the 96's) but always brushed them off or attributed them to stress or PCOS. For example, in 1999 I was dx with major depression and still have a lot of mood problems today. Who can say if that is related to thyroid? Tired all the time but have terrible insomnia... I can't fall asleep at night, yet frequently wake up at 3 or 4 am. All of a sudden, my hair became extremely dry and tangled, and every morning I have to get out all the knots. I even asked my stylist about it, and cut it my hair shorter thinking the tangles came from it being too long. It didn't help. I told myself it was just cause I was getting older. Then this summer I began experiencing dizzy spells. Mostly, it was nothing more than just a little dizzy or "woozieness", although there were a couple scary episodes. (My Dr. says this is stress since my mom passed in May and I am still sad about it.) It does not seem to have gotten any worse though.

Anyway, again thank everyone for the help. I'll post back and let you know how it goes.

hold72 · 02-06-2003, 01:23 AM

actually, your levels are within normal range. It is extremely helpful to get a full thyroid panel taken. This serves two purposes. The first, obviously will detect any problem. The second sets a baseline. A TSH can be within normal limits, but that doesn't mean your body is utiliziing it. I am 31, and have had hypothyroid since I was diagnosed at 15. At several points in my life I have gone into remission. though never for any longer than a couple of years at a time. I am currently down to synthroid .2, from a huge jump to .3 from .125. my TSH has fluctuated from less than .10 to 187. I was dx with PCOS in spring of '99, after 13 years of having between 1 and 10 menstrual cycles a year. Naturally I have been and heard every diagnoses available from being fat to premature menopause. I can say that I went on a life altering diet-lots of fresh stuff, no soda, no fast food, and counted calories, fat grams, carbs, and sodium, and used GNC ripped fuel without Mah Huang, and lost about 45 lbs and felt great, all test results came back normal, and conceived a child, so there is much truth to the weight control. Unfortunately after the birth of my son, my TSH was wacked out, and my PCP told me to come off my synthroid. I did this against my better judgement, and my TSH went from <.1 to 40.4 in 3 weeks, and within 5 weeks, I had gained 25 lbs. It was like hiting a brick wall. Long story short, take what your doctor says to heart, but you know your body and what feels 'right' and 'normal'. Be sure to get a full thyroid panel, and moniter your TSH monthly while you are on replacement therapy. The symptoms of hyperthyroid brought on by therapy can mimick or compound the existing symptoms. The exhaustion on both sides of that fencec is devastating. Best of Luck and let me know how your dr visit went.

DianeJ · 02-06-2003, 02:16 AM

You might want to check out an article that Kat posted: Article: New Guidelines Place More at Thyroid Risk

It talks about new guidelines: "Physicians use a simple blood test, the thyroid stimulating hormone (TSH) test, to determine if the thyroid is working properly. Previously, normal was between 0.5 and 5.0 micro units per milliliter of blood. The new guidelines, however, stipulate normal to be within a much narrower range: between 0.3 and 3.0." <---only part of the article. I have read, though, that TSH between 1 and 2 are the best. Still learning re: T4 and T3 so I can't comment on that.

Maybe print it out and take it with you?

bananasmom and Ashley - med dose is based on weight??? I never heard of that - for synthroid anyway. Also - I'm quite a bit overweight and I'm only on .05 mg (second lowest dose). And my levels are fine after about 6 weeks since I started taking it. TSH is 1.6 down from 7.89 (don't remember lab's range, about .4 - 4.64). Just wondering where that info came from?? Thanks.

Good luck Sharon. Hope all works out for you and you're feeling better soon. Sorry to hear about your Mom. Some of what your feeling can be from last May, but since your thyroid is acting up, that doesn't help. {{{hugs}}}

Aubreyyyy · 02-07-2003, 11:28 AM

Diane,
I say that meds are based on weight based on an assumption. I had a phone consult with my Dr when it came time to get on medication. He only knew 2 main things. He knew my TSH, T3, and T4 levels and He asked me my weight, and based on those 2 pieces of info he gave me a perscription.

Sharon,
My symptoms before starting meds was mainly being overweight. Beisdes that I have dark patches of skin (theighs/stomach). And irregular periods ever since the beginning of puberty when i was 12. From 12 to 17 I had about 7 a yr., 18 to 19 I had probably a total of 3 in that 2 year period. 20-21 I was at one every 4 months. I had never been able to get them regulated because I am allergic to artificial estrogen and artificial progestrone. I just started on real progesterone a couple months ago and It seems to be working to regulate that. Other than those three symptoms i don't think i've had much else.

DianeJ · 02-07-2003, 09:17 PM

Thanks for the reply Ashley! I'm still learning all about this (just dx end of November) so I was wondering where you had heard/read this. At first, my doc (not my regular one) was going to start me on .075 mg but then decided on the .05. But the way she was talking, she was basing it on how high my TSH was; but when she checked my T4, it was in normal range (high end of normal), so she decided to be cautious and start me out lower, didn't want me becoming hyper-. I wonder if she was taking weight into consideration too? Interesting.

Anyway, thanks for the response!

bananasmom · 02-08-2003, 07:14 AM

Diane - mine was also based on an assumption. My doctor said several things when we discussed starting me on a (in her words) "fairly high dose." I recall my weight, my good overall health and my young age (I'm 31).