What is the general feeling on here about thyroxine?

[sidneymark70]

I've just joined this site. I've had Hashimotos Thyroiditis for many years and my GP put me on Thyroxine which I only take every other day because it makes me feel hyper otherwise. What is the general feeling about Thyroxine? I dont feel it is making any difference at all but if I take more it has the described bad effect on me. Tried Armour (think thats what it was!) with a naturopath many years ago and it had a similar effect on me to thyroxine, it made my heart race so badly I nearly passed out on the train. It put me off, hence going back to GP and being prescribed thyroxine after that time. Just read about this site on Facebook and so am looking into it all again. From what I read yesterday thought I'd try an iodine supplement but was told by a dietician today I cant take this with thyroxine. In such a muddle but really want to help myself and make the most of my latter years feeling a lot healthier than I do now.

[PinkNinja]

Hi and welcome

If you have Hashimoto's you may find that iodine actually does more harm than good unless you know you have a deficiency. Your dietician is also correct, to a degree, about taking iodine and thyroxine. Iodine is used by your body to make thyroxine but, as you are getting some ready-made thyroxine in the form of your tablets, you don't really need to take extra iodine as well.

Thyroxine works well for many people, but for a few it causes nothing but trouble. Those are the people you are likely to hear from on here more often than not. Most people take thyroxine and get well so they don't need sites such as this.

For those of us for whom thyroxine doesn't work well, there are certain things worth looking into before abandoning thyroxine completely. If your adrenals aren't functioning as well as they should be (very common in people with thyroid disorders) your cortisol levels may be too low or too high. This can result in your thyroxine being converted into more of the inactive thyroid and less of the active one that your body uses. It can also result in rather strange over-reactions to very small increases in dosage of thyroxine.

Other things to look at are serum iron, ferritin (stored iron), vitamin B12, folate and vitamin D. Deficiencies, or even just suboptimal levels, of any of these can mean that the thyroid hormones are unable to get into your cells to be used as well as they should be. This can result in them building up in your blood and making you feel quite unwell in various ways, including feeling hyper on a low dose. Deficiencies (or suboptimal levels) also have symptoms very similar to those of hypothyroidism and, while your thyroid treatment may be adequate, leave you with lingering symptoms that you may attribute to your thyroid.

I really would advise getting blood tests for the above mentioned vitamins and minerals. You may be surprised. Don't settle for "normal" as an answer; get the actual numbers. You want them all to be well within the range and most definitely not anywhere near the lower end.

I hope that helps clarify things for you a little bit. You may also find the main Thyroid UK website helpful for information thyroiduk.org.uk/tuk/index....

Carolyn x

[greygoose]

Hi, SidneyMark, well, to begin with, it made me feel worse than ever. After starting it I developed hypo symptoms that I hadn't had before. But I have to say that once I got up to 200 thyroxine plus... can't remember how much T3, I was doing very well, losing weight and feeling good - except that I was still losing my hair! I went to a new doctor and he insisted I change to Armour...

Well, the hair started to grow again, but I put on sooooo much weight and felt mostly dreadful. Since then I've tried all sorts of things, but have never felt as good as I did on the thyroxine. But I have been reluctant to go back to synthetic because I really don't want to go bald...

Not much help, I guess, but just to say we're all different and whilst thyroxine is good for some, it's bad for others, and the side effects vary from person to person.

Grey x

[sidneymark70]

Thanks for that Grey, its so complicated isnt it? Think I need to up my dose of levothyroxine as am only taking 25 mg as I'm scared that over that I get hyper! But I have all the symptoms majorly apart from not losing my hair although I dont have bodily anymore e.g. eyebrows and underarms dont grow. So some doctors prescribe Armour - thought they were against it? I'm always too wary to say too much to my GP as I want her on my side. So what else, do you think, is bad, symptom wise with levothyroxine. Wish I'd known about this forum before yesterday, its such a depressing and all consuming illness to have isnt it? SidneyMark

[shaws Administrator]

SydneyMark

If we were doing well on thyroxine, I doubt many of us would be on the internet looking for advice/help. We would be getting on with our life and although I feel well now, many are still struggling and are usually told that their complaint is nothing to do with the thyroid hormone as the TSH is normal.

The fact that we have now got about 7,000 members now, it just shows you how many are not doing well on levothyroxine, or are not being diagnosed due to the TSH blood test being used instead of with the clinical symptoms. Many have clinical symptoms before the TSH rises enough and they have spent many years in ill-health or are though hypochondriacs.

There is a hypoallergenic dessicated thyroid hormone called Naturethroid - maybe your GP

would consider prescribing it for you on a 'named patient' basis and this is some info.

thyroiduk.org.uk/tuk/treatm...

nature-throid.com/

Regards

[sidneymark70]

Thank you for that, what does it mean by a "named patient"? I do agree with you about being thought of as a hypochondriac, thats exactly what I feel like but all I want to do is make the most of the last part of my life feeling well.

[helvella Administrator Thyroid UK in reply to sidneymark70]

Follow the link in shaws' post - it explains all about named patient basis.

Also, it is entirely possible to have been diagnosed with Hashimoto's but not actually be hypothyroid (at least for quite a long time). I feel the best advice at this moment is to make sure you know what your tests have been showing. So ask at your surgery. Here are details of your rights:

thyroiduk.org.uk/tuk/NHS_In...

Get details of tests done, results and reference ranges.

Also consider the other things we so often see alongside thyroid disorders:

vitamin D

iron/ferritin

vitamon B12

folates

Have you been tested for any of these? Could you ask you GP to do so?

[Dannia]

I believe that Thyroxine (T4) can work, and even for those who believe it is working eventually it causes more harm than good if they don't realise what can go wrong with the body from not having adequate treatment.

When we're given T4, we're never told (I don't know if Dr's know generally) that we're more likely to have gut issues resulting in low vitamins and minerals from absorption issues.

We're never told that our bodies may not actually convert the T4 well.

We're never told that our adrenals can be affected (again most Dr's aren't aware or don't agree with this)

If we were made aware of this from the start and it was monitored and we supplemented/ate more carefully, rested and changed stressed lifestyles, and healed the gut/took apple cider vinegar or something to help then I think T4 would work much better.

And for some people they just don't get on with it.