Levothyroxine... on off depression for 2 years!!!
Posted , 5 users are following.
Hi, I would really appreciate some advice. I had a total thyroidectomy 2 years ago, after being diagnosed with follicular cancer, I had radio active iodine treatment and everything went well, I was on 100mcgrs thyroxine until my first follow up, when it was increased to 150, since then it has been decreased and increased at every 3 month check, I went back to 100 a year ago, then 125 after that, then 150, now I take 125 one day and 100 the next. I understand it needs to be kept high to supress TSH, but I can't cope, I've had depression on and off for 2 years, something that I have never felt before I started the medication, my consultant doesn't listen to me, he just say's "we need to stop it coming back, we may give you beta blockers next time" or "it must be something other than the medication" I know it isn't!! Why would my levels fluctuate so much? Why can't I have balance? I don't put on weight ever, I get hand tremours and my legs ache, but still "it's not too high" I'd just like to feel normal again, seems that won't happen. Do we all feel this bad??
0 likes, 7 replies
Neldog Hilds1213
Posted
It is probably something other than the medication.... Its most likely lack of correct medication......
when you are on thyroid hormones, you would expect to see your tsh below 1, particularly if you have had thyroid cancer, you would expect to see your free t4 at the top of, or just over range and, most importantly to feel well, you want your free t3 at the top of, but not over range.
you need to find out what your doctor is actually testing and what the figures are. You are entitled to know the results of tests as the doctor has to give you access to data which he holds about you under the 1998 data protection act.
it sounds like he may be out of his depth and merely trying to treat you by testing your tsh and attempting to keep it in range, not supressed where it needs to be.
its assumed that you will miraculously manage to convert enough of the t4 into the useable t3, But now with no thyroid, you have lost 20% of your daily t3 output so in order to convert sufficient t4 into t3 tyou need good levels of, b12, d3, iron and ferritin. Has he tested any of these?
Depression which is not relieved with antidepressants is often found to be due to a lack of t3. ( liothyronine). This is well documented if you do a search.
First thing you need to do is get a full set of thyroid tests... You can get these done privately by dealing direct with the labs and its about £100 if your doctor wont help.
remember that thyroid tests should be done as early as possible in the morning, dont eat before the test and dont take your medication for at least 12 hours before a test.... It spikes in the blood a few hours after taking it and gives a false reading according to prof A Wheetman who confirmed this under oath when he was giving evidence at the trial of the late Dr Skinner.
much of what you have descibed in your post could be down to being allergic to the medication you are taking. Have you been using the same brand all the time? It makes a difference.
hope i have given you some ideas to investigate.....
x
Hilds1213 Neldog
Posted
Hi, thankyou for your reply. My TSH has always been below 1, except for one time when the medication had to be increased to 150, T4 is in range but T3 is never mentioned, he just say's "everything is as it should be" The brand of thyroxine changes between 2 on every prescription, the 25 mcgrm one has now changed to "a new formulation" I've read alot on people that say different brands effect them. I'm seeing my consultant on Friday and will get a print out of the blood results and see what's what. He tests thyroid function and haemoglobin. I shall post the outcome on Friday, thanks again.
Neldog Hilds1213
Posted
Oh, are you on the reformulated Teva? Its come back after about a 3 year ansense and is now, as far as i know, lactose free.
its not good enough to just have t4 in range, it will most likely need to be at the top end of the range. Or even just over.
heart palpitations are a symptom of insufficient meds as well as being overactive. The docs are terrified of people being overactive, but. You are only overactive if your free t3 is over range. Doctors frequently try to frighten us with stories of osteoporosis, ( Not true with levothyroxine only..... There are papers which show this...) and heart problems.
if thyroid patients are given a free hand with their meds and allowed to self medicate, the point at which thyey all feel better, is when, according the the tests, they are slightly hyperactive. It rather suggests the tests are wrong. No one would voluntarily opt to be hyperactive.
have you had a read of the doctor Antony toft book. Its available on amazon and kindle for less than £10 and it gives really easy advice about how ou should be treated. dr toft is a semi retired endocrinologist who used to be head of the brithish thyroud association. Your doctor would probably feel comfortable following dr tofts advice. Its called something like understanding thyroid problems...
MtViewCatherine Hilds1213
Posted
Hi Hilds, I have severe thyroid disease and tried for 5 years to get the meds right. Now, this might be totally useless for you, but no matter what I did, I couldn't get the dose right... It was just too sporadic for some reason.
I was drinking diet soda for the caffeine to keep my energy levels up and realized that coffee was no the same as the diet soda. I suspected that the variation was due to the intake of phenylalanine in the diet soda as a sweetener. So as my thyroxin dose increased, my energy levels went up and my soda consumption went down, but then by the next blood test, everything would go wonky because I'd cut back on my soda intake. Also, because of the lag in bloodwork, I was on this never ending roller coaster, not realiIng that phenylalanine is a precurser to tyrosine, which is a precurser to thyroxin.
I realized that the variation in phenylalanine intake was the key and the root of my problem. I still have my thyroid so I dumped the meds and replaced with amino acid therapy.
So if you aren't drinking soda, or some other form of artificial sweetener made from phenylalanine, this is mostly irrelevant. However, still a good lesson, in that it shows how important the essential amino acids are in thyroid disease. And in fact low amino acids may well contribute to thyroid disease, or may be a partial cure. My mother's had her thyroid removed, so in addition to natural thyroxin, I give her amino acids and they seem to help her health.
Neldog MtViewCatherine
Posted
I've been hypo for almost 30 years and have tried all sorts of med combinations. I've felt really well for the past 7 years but have been unable to lose weight. I started looking at amino acids a few weeks ago and currently take proline, which has helped my knees, i'm tempted to try methionine, inisitol and leucine, all supposed to be good for fat burning..... Do you know much about them? I'm still researching....... But am very encouraged by the knee joints..... Diet is clean, low carb.
xx
MtViewCatherine Neldog
Posted
Hi Nelsmydog, I pretty much shotgunned it and got lucky. I tried an essential amino acid combo, plus extra phenylalanine.
I did huge doses initially because I went cold turkey on the meds. I took at every meal, Three each of the combo capsules plus one phenylalanine. Then, tapered off to once a day (when I remember). I'm still adjusting, as I still have hypo symptoms, though free of the side effects for meds, so better overall. Haven't dropped any noticeable weight yet. I've been so sick I haven't even been able to exercise. So it'll be a bit of an uphill battle to lose the 40 pounds I gained while on the meds.
A word of caution though, if you tend towards sluggish kidneys, you'll want to be careful with the aminos. While they improve everything, I suspect that there's some sort of detox or other issue that can slow the kidneys if you aren't careful.
L-carnitine is known to help with stubborn hard fat. You could try adding some of that in.
Let me know how you do.
claire30897 Hilds1213
Posted
Hi, it does take some time for things to get back to anything like "feeling normal". For me it took over a year., if not longer and I had my total thyroidectomy 2012/13, with radio active iodine treatment. I I had aches, pains, and depression as well. Remember we are dealing with hormones here, and they have a massive effect on the body. If you are of an age when menopause can happen (anywhere from 30 to late 40 years old (possibly earlier in some cases), this too can have an effect on how you are feeling. If you try to have a healthy diet, and keep up with some exercise, you can only do yourself good. 2 years isn't really a long time in terms of healing and getting a blance on your meds. I still suffer from various things that I didn't before the cancer, and I'm sorry you are having such a hard time with it. I can't really asay anything else but to try to make other areas of your life ok, like diet and some gentle exercise if possible. I hope you feel better soon.