I've just begun looking into thyroid issues in the last few days since getting a high TSH on my blood test. And frankly most of what I've been reading has me majorly bummed and depressed.

I mean, from the reading I've been doing, it sound virtually *impossible* to find a doctor willing to work with you to find the correct meds, virtually impossible to get the doses correct, virtually impossible to continue to keep the meds at a proper level. The more reading I do the more it seems like real useful thryoid help exists for almost no one. I have an appointment to see an endocrinologist on Monday and already I'm dreading it rather than feeling like I'm seeing a light at the end of a tunnel. More like the light of an oncoming locomotive.

In fact this seems like about the most hopeless medical condition of any I've ever had. At least as far as getting the treatment "right". Do any of you feel that you have gotten the right treatment and are feeling better? And how difficult was it to get that right treatment?

Hi Merpig,
I am also a middle aged female---and in my family women seem to develop thyroid issues after 45-50. That's where I'm at. Common hypothyroidism.

It can be really hard to find a good doctor---who is experienced with proper thyroid treatment.
Have you visited the "Stop the Thyroid Madness" website? Incredible info, there, and there is lots of support---and links to finding good thyroid docs.

There is also an excellent thyroid forum on Yahoo---full of thyroid patients who share info and experiences with various doctors and thyroid meds. It is
"Natural Thyroid Hormones" on Yahoo Groups.

I have had no luck finding a good thyroid doc in a city of over 1 million population. You kind of have to keep trying until you find the right one---although some people have good luck with Mary Shomon's Top Docs list. She also has a great thyroid site on about.com.

For me, I have had to self-treat using Rx meds called "Naturethroid" or "Armour" (depending on availability). I have had to very slowly raise the dosage--- with gradually improving symptoms.

With a super high TSH---you really need an endocrinologist. The folks on Mary shomon's forum and top docs list might be able to help you find one---also check with the nice folks at Natural Thyroid Hormones Yahoo group---as they share info about their experiences with docs all over the country.

Best of luck! I hope you find great medical help and feel better soon!

FroheFrau

I would suggest seeing a D.O. rather than an M.D. or an endocrinologist. they are more open to using natural hormones but I agree - educate yourself, don't depend on a doctor

I have seen a D.O. who is *also* an endocrinologist. I was indeed hoping she might be more open, but she is utterly opposed to natural hormones in every way, in fact was quite contemptuous of even calling them "natural" though I did see her point in that regard.

I think you have that impression because people who are happy with their meds don't post about it and don't really even spend any time thinking about it.

My doctor has proven to be receptive to letting me titrate my dose a bit. When my TSH started to creep up I asked for a stronger dose and he complied. Even then it was still over 2 so I asked for another bump. I suggested that even though I was within the official range, I was still feeling rather hypothyroid and said I didn't think the dose was optimal for me. So he wrote me a prescription for the next higher dose. I tried that and found it was just too strong.

So I'm back on the 137mg ones and raising my carbs a tad to see how that works. And for some reason with this dose I felt was less than optimal a year ago, it feels much stronger now. In fact, the other day I cut a pill in half because I was feeling a little too amped. I'm walking around in 68' house without much on because I'm so warm.

One thing to keep in mind if you hit a wall with your doctor and you feel under-medicated is that very small increase can have big consequences many weeks later because of the delay in raising the blood levels. I have done things like cut pills into quarters or halves and taken that fraction maybe once every 2 weeks or so. You do have to go cautiously because it takes 4-6 weeks to feel the effects and over-shooting is darned unpleasant.

Also, you want to not do that 4-6 weeks before they test your blood.

I've heard that endo's are the worst for working with their patients. They go by what they learned in medical school and that's that.

I answered your other thread too. I know it is discouraging. Part of the problem is that when you look something like this up on the internet, you won't see post after post of people saying, "I'm on Synthroid and I feel great and that's the end of the story!" It's human nature to post to look for answers to questions, or to post problems...it's less likely that someone will just happen to keep posting that things are on an even keel.

That's just how we humans are.

That said, hypo is a learning curve. (Hyper too, probably, but I sure don't have that!) I'm struggling myself. However, my FIL was DXd as hypo more than 20 years ago; he was put on a starter dose of Synthroid, felt 100% better and has never had to change his dosage since. He gets an annual blood test to check his TSH...no other lab tests at all. So it's not always gloom and doom for every person.

Hang in there and keep posting--I'll be interested to see your progress since I'm still going through this too.

Ha ha...it looks like Nancy and I were posting at the same time and had the same idea (first paragraph)! Nancy, I agree.

I have been on synthroid for about 12-13 years and I really am doing very well on it. I've had to have it adjusted once and other than that, it's doing it's job and I feel good. I get it tested every few months and everything is holding steady where it should be.

My general doctor listened to my symptoms, ran a blood test and it was very clear I was hypothyroid. He gave me synthroid and it did the trick. I didn't have to go thru a lot of adjustments, just the one and it was about 4 or 5 years ago. I didn't feel any differently but the blood test showed a need for adjustment.

I've been quite happy with it.

sounds like my brother-in-law's attitude too. He works at a medical group and sees tons of patients with thyroid conditions all the time. He says that virtually all of them get put on synthroid, get their doses adjusted properly, and then are perfectly fine from then on, which is the case with my dad, just like your FIL (and my mom too, before her death). He could not understand why I was having such angst about the issue. He says (and as Nancy put it so well too) "you don't see the people who are happy about their meds posting a lot on the internet".

I have been on Cytomel for just a bit over a year. From that I started having periods for the first time in 23 years...however I had to go through 3 years of endo "trying" all sorts of other hormonal treatments as he was convinced it was not my thyroid but rather a hormone problem.
At any rate he finally agreed to the cytomel and it has helped me tremendously..wish we would have started at that point though. My labs do not really demonstrate hypothyroid, but symptoms did (hair loss, inability to lose weight, low body temp, fatigie, cloudy thinking.)
Kristen

Kristen, I'm so glad you're getting Cytomel, and that it's making you feel better. However, T3 in and by itself won't completely clear your RT3 problems (and you have all the symptoms) in and by itself. It's how you take it (dose amounts, time of dosing, cycling up and down) that can either just make you feel better -- or end all the hypo symptoms once and for all.

First, you cannot take T3 (Cytomel) without first making sure your ferritin levels (a bit different than iron level because F measures how much iron you have in storage) and adrenals can use it properly. This means you need to have both a ferritin level AND a Cortisol Saliva (not serum) test. Assuming your ferritin is between 70 and 90, and your cortisol levels all four times of the day are neither too high or low, you can move on to the next step. If not, you need to address both issues and get them corrected first.

Second, while you're having those tests run, get a FREE T3 and REVERSE T3 as well. You divide FT3 by RT3 (ft3/rt3) -- and the results should be 20 or more. If not, and I suspect not, despite taking T3, your T4 is still converting to RT3 and blocking that Cytomel from reaching your cells. So even if your Free T3 is high due to the medication, it's not doing what it needs to do at the cellular, metabolic level. Hence the hypo symptoms.

Third, assuming all is well with Ferritin and Cortisol, you should take a look at all the information on http:www.wilsonssyndrome.com to see what dosing cycle might work best for you. This will depend on your current 3-hour after waking, 3 hours after that and 3 hours after that temps. They should all be between 98.4 and 98.6 on average.

If they're not (and I suspect that they are not), and you have a RT3 problem, you need to actually not just drain the rT3 reservoir, but 'clear' the cell receptors. This takes dosing in a certain way, for a certain time, and maybe even for a cycle or two. The idea is to not just get your day time temps to 98.4 - 98.6 -- but to have them be completely stable for at least three solid months! That's how long it takes (minimum) for the reservoir to drain and the cell receptors to clear. All this is explained very well on the site.

If you have any questions about this, or other thyroid hormone issues, just holler.

Lisa

Right now the whole thing might seem impossible because thats how everything seems your thyroid is low.

You will sure learn about dealing with drs and medications with this disorder. OTH its so great when you get it all figured out. Be prepared that you'll probably be messing around for the next year to get the right medication and levels for you. Always get a copy of all the tests that are done, don't take your medication on the day of the test, write your thyroid dosage and type of medication on the results.

As a thyroid patient you have to be very proactive about finding the right dr for you.

Scarlet, on this site found mine. Which is amazing to me since shes on the other side of the world.

about.thyroid.com lists drs and the comments usually say if they prescribe natural thyroid.

Welcome to the club!