Are there any other ulteranatives to Levo?

[Amywiglet]

My other half has been on levo for a few years, but they keep upping and downing his dose like a yoyo. when they put it up he's tired all the time and got no appetite but when they lower it he's better but they dont like it.

[PinkNinja]

That's interesting. Most people have the opposite problem where the GP reduces the dose and people feel tired but they feel better when the dose is increased again.

In your other half's case, it could be that he is not tolerating it very well. There can be various reasons for this. Iron and vitamin B12 can be two of the causes for not tolerating the dose he needs. There are 5 blood tests that we tend to recommend when people don't feel right on thyroxine; serum iron, ferritin (stored iron), vitamin B12, folate and vitamin D. With the exception of vitamin D, the normal ranges are very wide and range from very low. If he manages to get these tests done, his ferritin should be above 120 (70 for women) and B12 above 500 (not the measly 200 that the NHS states!). He may be fine a little below this but most people find that they need to have their results at least at these values.

Once his ferritin in particular is at a good level, he may find that he does much better on thyroxine.

There is always the possibility that levothyroxine doesn't suit him, although it is fine for around 85% of patients. If everything else has been checked and he still isn't feeling well on it, it may be time to look at alternatives.

It is best to see what else could be causing the problems first though as they will likely cause similar issues with the alternatives too.

I hope that helps.

Carolyn x

[helvella Administrator Thyroid UK in reply to PinkNinja]

Another classic reason is that someone is taking their levothyroxine with food one day, without the next. Or something like that.

To achieve stability, levothyroxine is best taken well away from food, drink (other than water), supplements and other medicines. By a couple of hours either side if possible.

Rod

[shaws Administrator]

Unfortunately, treatment of thyroid gland problems appear to be difficult for GP's to understand. Do they know that thyroid hormones run our metabolism? I doubt it.

It is the worst thing doctors can do is adjust your medication according to your TSH level. If you were over-medicated you would soon know about it and then an adjustment can be made and even missing a day's dose can alleviate your symptoms.

If you can get a copy of your husband's latest thyroid gland blood test results and post again together with the ranges (figures in brackets) someone will comment upon them. Many people are either undertreated or treated according to the TSH but ignoring the clinical symptoms. The purpose of treatment should be alleviating them. If he hasn't had a Vit B12, Vit D, ferritin, folate and iron, ask the GP to do these. Also a current thyroid function if he hasn't had one for a long time. TSH, T4, T3.

This is a link and there are other topics on the page. It is like most of us on this site, we had to find out own way to better heatlh (maybe not 100'% but definitely higher than the almost zero you feel like when the meds don't suit.)

This is an excerpt and cursor to the question dated January 25, 2002. There are also other topics at the top of the page but some links within may not work.

Dr Lowe: Your observations don’t suggest to me that your pituitary gland isn’t functioning properly. In fact, your observations are consistent with what science tells us about a patient's T4 dose, her TSH level, and her metabolic health or lack of it. If the goal of a doctor is metabolic health for his patient, he has no scientific basis for adjusting her thyroid hormone dose by her TSH level. If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.

The TSH level is not well synchronized with the tissue metabolic rate. (Probably most doctors falsely assume that studies have shown that the TSH and metabolic rate are synchronized. But despite my diligently searching for years for such studies, I’ve yet to find them.) Adjusting the T4 dose by the TSH level is like adjusting the speed of your car by a speedometer that's out of synchrony with the actual speed of the car. Adjusting the speed of a car by an out-of-sync speedometer, of course, will get the driver into trouble—either with other drivers who'll object to the car traveling too slowly, or with a police officer who'll object to the car going too fast. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.

web.archive.org/web/2010103...

[PinkNinja in reply to shaws]

Have a look at Rod's blog from February. He quotes a paper where they show that TSH doesn't respond how it should to serum T4 levels in hypothyroid patients and that hypothyroidism should be treated as a different entity to euthyroidism or hyperthyroidism. Hopefully that helps start your search for such papers showing that TSH is not a good way to treat hypothyroidism

thyroiduk.healthunlocked.co...

[Hidden in reply to PinkNinja]

Hi just wanted to say im like that mines up and do all the time alwas having blood test done was on 25mg for over a year felt better on that but june last year put on 2stone and puffed right out thought it was water retention but wasn't seem to have alot of inflammation, now on 100mg / 50mg got blood test in june forgot to say at one time was on 25mg every other day because I was getting so hot.