Need Advice

PattiL · 09-10-2003, 01:20 PM

For years I unsuccessfully pursued a Hypothyroid DX, was told I was depressed, needed to go on a diet, quit complaining, etc. Finally about 2 years ago my PCP sent me to an Endocrinologist ( just to shut me up, really) ran all sorts of tests and said I had Hashimotos Thyroiditis, that someday , given my family history, it was bound to turn into full blown Hypo but for now no meds needed. After trying for years to prove I wasn't crazy that was enough for me, my insurance had approved 3 visits so I have not been back since. Haven't been to see my PCP in 2 years except to try to quit smoking . In March of 2003 I went to my GYN for my annual exam and within 2 weeks she is telling me I have PCOS, mild I guess, has me on 1000 mg of Met a day. I'm not trying to concieve, has my babies 17 and 19 years ago. I have to admit I do "feel better" in some ways but still have all the symptoms I have always had, fatigue, insomnia, weight gain, brittle hair, "brain fog", etc, etc. The biggest problem has always been that my TSH was waaaaayy low, like <.03 the last time I had it tested, I don't know enough about the other numbers to have ever really paid attention to them.

So anyways, what should I do? DO I call my PCP and put up with his attitude again to beg for another referral back to the Endo? Shouldn't the Endo have called me sometime in the last 18 months to schedule a followup of some sort anyways?

You've probably figured out that I am not a real confrontational person but at this point I am fed up, I take care of a business and a family and my personal health seems to take a back seat.

any advice is greatly appreciated.

shenacat · 09-10-2003, 03:37 PM

Once a diagnosis of hashimoto's is given, you need at least yearly checkups.

Go find someone to do a full thyroid panel on you and bring home a copy of the test results (lab sheets). You need a TSH, T3, and T4.

There are people who believe that if you have antibodies you need to be on replacement drugs ASAP so the antibodies go down (the drugs take the pressure off the thyroid, so the antibodies stop attacking it) so that you can halt the progression of the disease and make you feel better right away.

The longer you have untreated antibodies floating around in your system, the sicker you feel, and the greater risk you have of developing additional autoimmune diseases like Lupus, Rheumatoid Arthritis, etc.

Hashimoto's is typified by swinging between hypo and hyper states, until it finally settles into hypo. At a TSH of 0.03, you were in a hyper state.

PattiL · 09-10-2003, 08:06 PM

Thats what I was afraid of.... its my own darn fault for not doing something sooner but i am sure you can imagine how sick I got of going to drs that told me it was all my imagination or that losing 50 lbs would "cure" all my complaints.

I think what I will do is try to avoid my PCP, maybe I can call the Endos office and get an appt without a referral or Just call my PCPs office and get the referral without having to see him!! I know I know, I obviously just need to find a new PCP but I'll try this first and see what happens. I need to make up my mind to take control of my own health.

Thanks for the good info and advice, I really appreciate it.

SInce you seem so informed let me ask another question......

since I am not TTC and didn't even know anything about PCOS until my GYN brought it up do I need to be seeing her more than once a year unless there is a problem since she put me on the Metformin? I haven't had any dramatic weight loss, still have lots of hair on my face, etc, so how would I know if its working if I don't have another ultrasound ?

Thanks again

Juliekaboolie · 09-10-2003, 09:28 PM

Hi Patti... I'm going to jump in on the Met question. The Met isn't just for TTC although it can/should help you ovulate regularly. A lot of drs think that the root problem of PCOS is the body's inability to utilize insulin properly. Metformin (or Glucophage) seems to fix this problem and works by sensitizing the cells so that your body doesn't need to pump out so much insulin. Insulin and fat go hand in hand , it seems. Women with PCOS are at high risk of developing diabetes and heart disease and the use of Metformin seems to decrease this risk by making it so your pancreas doesn't have to work so hard, etc. So. Keep using the Metformin... your dr is definitely informed and on the right path with you. Also, it takes time for the Metformin to regulate your hormones.

PattiL · 09-10-2003, 10:22 PM

Julie, thanks for the info, mind if I ask more about your situation, as in the PCOS and Thyroid disease? do you see one Dr for Both?

As in will the PCOS dx be of interest to the endocrinologist when I get back to see him one way or the other? I had not been dx with the PCOS the last time I saw him. I thought this Endo was my savior when he told me about the Hashis but like I said earlier, he never said anything about following up. I already know my PCP could care less, his exact words were

" I will send you to see an endocrinologist but I don't know what good it will do, I don't know why you have these symptoms and can't lose weight but I guarentee its NOT your thyroid"

Thats why I say I am going to try and bypass a visit to my PCP all together.

flashing · 09-13-2003, 11:40 PM

Have you been to the about.com thyroid forum it has lots of really great information. It helped me so much.

www.about.com and then click on medicine and diseases and then go the thyroid . My tsh stays about .01. if it were at .03, I would not feel well. maybe you are not converting correctly. I do not know alot about that, but when they added cytomel to my synthroid, I began to feel better. There are alot of people with hasi on the forum boards there.

PattiL · 09-14-2003, 12:09 PM

actually I've been going to the message boards at About.com for a few years now and don't seem to get much of a reply from them on anything. I think the really low TSH thing must stump them or something.

I found out theat I can't go back to the Endo that dx my Hashimotos anyways because of a change in my insurance so I am waiting on a call back from my PCP office with a referral to a new one, maybe I will get lucky with a new one? ANyone I have ever seen about the Thyroid issue either tells me its NOT an issue or that its not ENOUGH of an issue to warrent medication.

Its very frustrating to think that I may have to just wait until I feel worse than I do already to get some help!

nobimbo · 09-14-2003, 12:41 PM

Patti,

I think you are supposed to have bloodwork after the first 6-8 weeks on Met (I've seen Christy say that over on the Met forum, which you may want to go to).

You may find these low thyroid threads on a low carb board helpful...I learned so much after reading through all the posts:

http://www.low-carb-friends.com/bbs/...ghlight=anemia

http://www.low-carb-friends.com/bbs/...e&pagenumber=1[/url]

One of the woman on that board ("nonstickpam") also is active on a yahoo thyroid board. She has Hashimoto's and she has been studying thyroid info for 13 years (and has some medical background) and is also a patient advocate. She seems very willing to answer questions:

http://groups.yahoo.com/group/ThyroidFitness/

Linda

PattiL · 09-14-2003, 04:21 PM

linda

thanks for the info, my gyn did not really say anything about follow up in a few weeks or anything. I'll get copies of the bloodwork she did before I go to this new endo so they will have something to compare to besides the bloodwork the orginal guy did over a year ago.

I'm gonna check out those links you sent to! THanks again

Patti L

shenacat · 09-17-2003, 09:37 PM

Before I was treated for thyroid, I couldn't lose a pound even on a strict atkins diet. As a matter of fact I gained 6 lbs during the 6 weeks I was on it.

Once I got on meds, I stopped gaining weight. When I added in the glucophage, I lost a total of 25 lbs before I leveled out (still overweight, but at least not gaining). I started having cycles every month, 30-40 day.

I also found out I had low iron (ferritin) and have been on supplements since. My iron stubbornly refuses to improve despite the supplements. I think it's because I take chromium GTF, and my body sucks it all up like crazy (iron helps it work) so that I do not get sick any more with IR.

See, after I went on glucophage I thought I could quit the chromium GTF. I did and started getting sick again with a little IR, not as bad as before but still having reactions after meals. So I went on a lower dose - only 200mcg every day instead of 3x a day like I'd taken it before the glucophage - and it seemed to do the same job as before. No sickness after meals now. But I read that chromium can deplete iron, and I think that's what's happening. I have to weigh the risks though and keep using it, because IR is a worse devil than low ferritin ... my hematocrit has always been very good despite the low iron stores.

Anyway enough blabbing - I hope you get some good treatment!