TSH 117.6

[sanlee]

This is a new high for me -- TSH was 104 when first dx'd. After years of trial and error I do best with 50 mcg Cytomel (T3) divided into 4 doses of 12.5 each during the day, and about 25 Levoxyl or equivalent (T4).

The high T3 amount is because I don't convert T4 to T3 very well -- high results on Reverse T3 tests.

With these amounts my free T3 and free T4 stay smack-dab in the middle of their proper ranges, but my TSH is suppressed -- something my new doc doesn't like.

However, when not suppressed, TSH bounces all over the place -- anywhere from .5 to 117.6!

My questions:

1. Are there any studies I can point to that would show him that suppression isn't bad?

2. I believe in the case of thyroid cancer, suppression is advised. I've never been tested for nodules (cancerous or otherwise), nor for antibodies (Hashimoto's) -- should I be?

3. And what damage is this doing to my health? My cholesterol is way up, near 300, despite strict McD'ing for past 3-4 months. I've read that uncontrolled hypothyroidism can lead to hear failure -- is this true???

Mainly I need to stop all this bouncing around -- it's wreaking havoc with me. I've been on Mary's Mini for nearly 4 weeks and have gained 6 pounds. Other intense symptoms are flaring up again, especially muscle cramps, weakness, slow thinking, scaly patches of skin, hair falling out, etc.

[Mrs. Doodlepunk]

I think I have read that symptoms like yours can be from antibody attacks on the thyroid.

I found that for me, synthetic hormones just won't do the trick. I was never feeling well on Cytomel, and when I was on levothyroxine I was getting weaker and would stop breathing when I was asleep. I now take dessicated thyroid and life is good. My TSH is very suppressed, I have Hashimoto's and my doctor says it's OK that it's less than 1. I think my last TSH was .001 so my dosage was decreased a bit. My free's were a tad elevated too.

If your doctor isn't listening to you tell him you feel bad, then you need to find one that does!

[sanlee]

Thanks, Mrs. D.

Are you still able to get dessicated thyroid -- I've heard production has either stopped or slowed down?

I did try it and did pretty well to a point. I found I needed additional T3. If I upped the Armour I had too much T4 which then converted to RT3. So I switched to the bio-identical synthetic with good result.

As for switching docs, two points. It's unbelievably hard to find a doctor in CT still taking patients. The second is that this guy is willing to prescribe what others consider a high amount of Cytomel -- that's pretty rare. So I want to work with him -- I just need to convince him that a low TSH -- like the .001 is not a bad thing.

If your doc thinks suppression is OK with Hashi's, maybe I should insist on a test for that.

[Mrs. Doodlepunk]

Definitely check the antibodies. Some people with autoimmune thyroiditis have have autoimmune-other stuff. Some with Hashi's are sensitive to gluten, which I think I am. Avoiding it is a real job!

You can still get dessicated, the shortage was because the FDA told the generic supplier to stop production. Westhroid and Naturethroid are made by the same manufacturer and that is what I'm taking. It's OK but not the same as the old Armour formulation. I wish they would go back to the old Armour, but they don't make a ton of money on it so they don't really care if they alienate their customers by changing it. Long story.

Anyway, there is a Canadian manufacturer that has a good formulation that they say is the same as the old Armour. I might try that.

You can take Armour AND Cytomel, it would be far better than all synthetic!

[somnolent]

Other intense symptoms are flaring up again, especially muscle cramps, weakness, slow thinking, scaly patches of skin, hair falling out, etc.

Seems to me that that's the most important part. You are obviously not doing well on the current regimen and could he please adjust it.

[Mrs. Doodlepunk]

I believe that the problem is that synthetic hormones are not quite the same as the hormone made by your body. It tricks most of the cells into thinking it's real thyroid hormone but people on synthetics still have symptoms, it varies but I know people with a TSH below 3 who are on Synthroid and also have high cholesterol, are obese, thinned hair.

It's controversial among some, and Dr. McDougall of course does not recommend dessicated, but I was dying on Synthroid, and I've had problems with other synthetic hormone replacement. I won't touch the stuff.

[serenity]

Mrs. D -
I'm with you about sometimes not doing well on some types of meds even though my TSH shows as suppressed. Right now I'm doing OK on a generic since Armour stopped supplying. I'm not sure if I will be for the long term. But I'm even on the last available of that. Thanks to you and others on this board, I learned about Naturethroid. Unfortunately, they are out of stock too. Aargh! This has been so frustrating. What is the name of the Canadian product you found? Thanks.

[Mrs. Doodlepunk]

Have you checked other pharmacies in your area? I found that for two dollars more than I was paying through our insurance from Medco, I could get the same thing from a local pharmacy. They tell me they have plenty in stock for me. Ordered it direct from the manufacturer and I'm the only one of their customers taking it!

The Canadian company is Erfa. I emailed to check on getting it the other day and heard back right away. Here is a link: http://erfa-sa.erfa.net/thyroid_usa.htm

[serenity]

Have you checked other pharmacies in your area? I found that for two dollars more than I was paying through our insurance from Medco, I could get the same thing from a local pharmacy. They tell me they have plenty in stock for me. Ordered it direct from the manufacturer and I'm the only one of their customers taking it!

The Canadian company is Erfa. I emailed to check on getting it the other day and heard back right away. Here is a link: http://erfa-sa.erfa.net/thyroid_usa.htm

Thanks! Yes, I emailed RLC labs when the pharmacy told me that Naturethroid was out of stock, because I didn't believe them. =( The mfg confirmed that they are out of stock until January, and they didn't know of any pharmacies in my area that had any. =( =(

I'm almost ready to throw in the towel and try the synthetic, but maybe now I don't have to. Thanks again.

[Clary]

geoffrey, have you had experience with or do you know of any one working successfully with natural licorice root and potassium rich (low sodium) foods to support the adrenals?

Huge, underdiagnosed issue w/ hypothyroid of any sort is adrenal fatigue. Low thyr. is a big stress on body and can easily burn out adrenals. Most of symptoms are identical or very similar. Simple saliva test can tell adrenal function. You want at least 4 points in time tested throughout the day. I have seen Hashi patients have endless trouble getting balanced and terrible symptoms until finding out about and addressing adrenals and then they find that really that was the biggest problem and they were very over medicated on thyroid hormone trying to compensate. Once the adrenals were supported (not even healed, just starting w/ support) much less thyr hormone balanced everything out and all symptoms resolved.

Search around this linked site for more adrenal info but here is a start http://www.stopthethyroidmadness.com/adrenal-info/faq/

[Mrs. Doodlepunk]

I had adrenal fatigue, diagnosed by the doctor I went to after my original doc refused to order further testing. I had been deteriorating rapidly after being started on levothyroxine, to the point of not being able to walk more than 20 feet without trembling and becoming so weak I had to sit down. Then I could barely get back up after a rest. I was having periods of apnea during sleep. My husband had to wake me up to remind me to breathe.

My saliva testing showed moderate adrenal fatigue. I never took hydrocortisone or licorice root, tried one supplement my doctor recommended but it disagreed with my stomach. During this period, my doctor advised I use olive oil liberally and I did. That didn't go well either! Back with McDougalling and with lots of rest (two naps per day) I recovered over the course of a half year and now am back up in fighting form. I can now exercise without feeling bad.

When Gramma used to say "you have to take care of yourself" she knew what she was talking about. When you are tired, rest. Eat regular meals and don't burn the candle at both ends. I did not follow this advice for many years, all the while probably had hypothyroid symptoms and just drank MORE COFFEE to cover them up. I'm sure that didn't help my adrenals or anything else - a pot of coffee per day and more at work.

[sanlee]

I'm posting to bump this up. Finally had the antibody tests, very high, DX is Hashimoto's, but doc still won't accept suppressed TSH, and passed me off to an endo.

The endo doesn't believe in Rt3, Armour or equivalents, or suppressed TSH as treatment. So basically I'm on my own.

DH was laid off, health insurance expired, my only options are ordering thyroid replacement overseas. I did very well with NatureThroid and McD'ing for almost a year -- weight went from 178 to 118 -- then hypo symptoms came back and weight started creeping up, now at 130.

I tried titrating up from 2 grains to 3, but the hypo symptoms got worse. Probably low adrenal function.

It's beyond frustrating. I was reading about a young father in the Midwest who died of a toothache because he had no health insurance and couldn't afford the antibiotics. If I go untreated, what's next, a myxedema coma?

I just don't know what to do.

[somnolent]

Would you qualify for Medicaid? Are there any free clinics that you could visit? Those would be ways of getting some basic medical care. But even when you had insurance, you and the doctors did not see eye to eye on how to replace your thyroid hormone. I guess you would also need to find a doctor who shares your philosophy. Maybe if you find one in your area you could ask his/her office about discounted fees or a payment plan.

[sanlee]

Thanks, Somnolent. I'm looking into what assistance we might qualify for. I'm not sure what happened to all the free clinics that I remember being around in the '70's and '80s -- can't seem to find one in my state, at least not within driving distance. But I'm not going to give up, there has to be help somewhere.