Just started trial of levothyroxine, now I'm worried

Hi LAHs, thank you. I have been eating the prunes, plus apricots for the iron. Lots of spinach and leafy greens and red meat. Been eating lots of sardines too and experimented with liver, something that I wouldn't normally eat. Btw, it was horrible so haven't had it since.

My iron levels have risen nicely over the last 4 months and haemoglobin at 10.6 so now on 6mth blood tests instead of 8 wks. My menstrual cycle continues to be unmanageable, very heavy for a few days which makes life very difficult and it's very irregular and unpredictable, has lasted for 5 weeks once, which probably gave me the anaemia in the first place. If all my problems were due to the menopause then probably only another few years to suffer!! Lol 

Hi jenny, thoughts that occurred to me are: 'if your periods are still heavy are you on too low dose of thyroxine?' and 'have you tried having a Mirena Coil fitted?' It's usually used as a contraceptive but my GP suggested it as a way of managing heavy painful periods. It's brilliant. It lasts 5 years. I've now had 2. With the first I still had periods, though they were light and painfree. With the second my periods have stopped altogether.

Hi Jenny- The double periods, and long periods, excessive bleeding happens with low thyroid. That all goes away when the thyroid gets regulates as long as there aren't anyother issues. Keep in mind, your thyroid regulates metabolism, if it is low, your body ages rapidly and all sorts of health problems result. With the menstrual cycle, once the system is thrown off, it can take up to two years to get your cycle regular again. To help this, I highly recommend acupuncture. The acupuncture will get your body on track a lot faster than it could on its own- I'm talking 2 months instead of 2 years. They used to use birth control pills to regulate the cycle, but that only makes things worse in the long run, because you're further messing with the endocrine system.

The acupuncture has saved me through all this, keeping me on my feet, when I would have otherwise been down, and helping me recover much more quickly when I have a bout with low thyroid, as I do periodically. It seems for some reason, my thyroid changes faster than it can be monitored, which is the major problem with the whole system. The thyroid goes down or up but doesn't show in the blood accurately until about three months later. In the meanwhile, the whole system's gone awry! Anyone else run into this?

Yes, low thyroxin results in the heavy  and frequent periods. But stopping periods isn't healthy either. Barbara, your Gyno doesn't think there's anything wrong with that? I know some of the birth control mechanisms can make it heavier or lighter. I have a friend who has some sort of copper insert and it caused her periods to be very heavy, but still regular.

I find that to figure anything else out, I always have to get the thyroid on track first. Once the thyroid gets back on track, I can get everything else back in order with herbs, acupuncture, diet, etc. But if the thyroid is out- forget it! If the thyroid is out and you start messing with everything else, you're on a dangerous path to frustration and never ending illness and surgery. At least, that's how its been for me. The doctiors only treat one part of the body and foget that everything's related, so they're happy to cut one part out and believe its ok. I certainly wouldn't drive a car with missing parts, I'm not sure why doctors think its OK to remove rather than repair human parts.

You really need a team of natural practitioners to manage this disease if you're ever to recover. Counseling helps too, since the whole thing is enormously frustrating and can take a drastic toll on life in general. I've had a heck of a time trying to maintain any sort of stability in my life with the repeated cycles of being down for months at a time.

Hi catherine,

I've found that a good way to measure thyroid levels is my pulse whilst I'm lying down, after I have been lying down for 1/2 hour. My pulse very quickly reflects my thyroid levels. The way to do this is:

(1) when you feel that your thyroid levels are about right, after you have been lying down at night for 1/2 hour, measure your pulse (number of beats per minute). This is your baseline pulse and what you are aiming for.

(2) when you feel your thyroid levels are wrong, measure your pulse as in (1).

If there are more beats per minute, reduce your dose slightly (I do 12.5 mcg at a time). Leave it a couple of days, check your pulse again and repeat from (2).

If there are fewer beats per minute increase your dose slightly. Again, leave it a couple of days then check your pulse again.

It seems to be important to take your pulse around the same time every night.

The other thing to do, is to go and get a blood test before increasing your dose (and before taking that day's dose).

The other thing I've found is I need 25mcg thyroxine more between the months of September and March inclusive (UK winter).

Yes!!! I don't have a very cold winter here inthe San Francisco area, but I still do feel l ike I really need more October through march. What does your doctor say about this?

Hi Barbara,

What would be a normal pulse range. I am told anything between 60 to 100, below 60 is hypo and over 100 is hyper, but that range is wide. What do you think?

I like your idea about monitoring pulse. That gives a number to work with. The blood test isn't good for adjusting dosage short term because it takes three months to stablize, and following increase, you get a spike for some time period, which if you did a blood test, you'd get a falsely high number, because the spike will eventuallt level out, If you try to use the blood tests for anything less than three months, they aren't reliable, unless you have an amazing practitioner that works with them so much that they can eyeball them based on the dates you increased your dose and make a ballpark educated guess. So better off with the pulse.

Between 60 to 100 bpm is what is quoted everywhere but the most important rate is the RESTING rate which one should take first thing in the morning before you do anything. I am not sure if a resting rate between 60 and 100 is too good, it should be close to 60 - 70 resting. But I haven't researched that deeply enough yet.

I think if you adjust your dose then find you have a resting pulse of 100 bpm then you have a BIG problem, you are Hyper,  which is going to take some time to correct - unless you have serious medical intervention (like an injection of Glucoglob...... something......(sp?)) - it's a serious business to bring hyper down quickly. 

This is not a sensitive enough indicator and I would say this practise is dangerous, don't mess with your heart. Find a resonbly priced lab , do your own research and keep looking for a GP or Endo who will work with you. I have not yet found the latter.

I've got a really good GP who goes by symptoms snd listening to his patient. Back in 1998 he and I had already worked out that the blood tests didn't reflect the sctual levels for about 3 months.

Sorry, I was using my phone to reply and it jumped then sent the message! I've now switched to my computer.

NOTE: I play safe, I ALWAYS go and get a blood test the next morning before I increase/decrease the dose and I don't take my thyroxine tablets that day until after the blood test. I also only increase or decrease the dose by 6.25-12.5mcg thyroxine at a time every couple of days. It only takes 2 days to get the results of the blood test back (and that is on the NHS!) - it takes longer to get to see my doctor, but in the meantime, I go to my doctor's surgery and get a printout of the blood test results to validate the action I have taken as a result of my pulse rate. It has yet to be wrong (17 years and counting..). Mind you, we work on the basis of 'the direction of travel' to determine whether I am going under- or over- active. So, he looks to see whether my levels have decreased since my last blood test (irrespective of whether they are in range or not). 

[LAHs does this narrow pulse range and the follow up blood test and the fact that I am only increasing/decreasing the dose by a small amount, allay your concerns?]

My doctor has also validated for himself that my pulse is a good way of measuring my thyroid.

There must be a particular combination of key strokes that sends a message...I again sent that message too early.

To continue...Later blood tests always validate that I was right. You have also got to take into account that I have low blood pressure, a normal ECG test, and low cholestrol. So this way of managing a thyroid condition isn't for everyone.

I use 60-70 beats per minute. I do use a resting pulse as I take it after I've been in bed, lying quietly, for about an hour.

Sounds as if you know what you are doing barbara, there is a saying by a knowleagable Endo, "Start low and go slow". And you are doing just that.

Hi Barbara

Hi MtViewCatherine

My comment was editted by the moderator because a link which I had enclosed would not open, fair enough. (It opened for me, but nevermind).

What I was trying to communicate was that a very enlightening article is:

Peripheral Metabolism of Thyroid Hormones:

Review by Greg Kelly M.D.

Peripheral means the liver in this instance. Lots of stuff goes on in the liver pertaining to thyroid hormone conversions (thier metabolism). Its a very interesting and vital organ - Liver, it's not just for processing alcohol any more!

 

Hi Barbara! That's great! I have been doing live/galbladder cleanses regularly  and have found them to be extremely helpful. Nice to see some reasoning for this!!!

The "...glob...." work I was trying to remember is glucocorticoids. This substance will inhibit the conversion of T4 to T3 in an emergency, useful if you ever go seriously or suddenly HyPERthyridic.

Miscellaneous fact. Watch out for medications with "..cort.." in thier name. Cort means Heart, research thier side effects before taking.

Hi LAHs, have been looking into liver function too lately. My sister has been diagnosed with the MTHFR gene mutation - she has a rare disorder called amyloidosis and they are looking at her genes. She has two copies (one from each parent) of the C677T which causes folate deficiency.  From what I understand, the liver struggles to methylate and a direct side effect is you end up with a lot of toxins...this in turn is maybe causing my hives. Apparently it's a fairly common affliction that most people are unaware of. Suggested this idea to my GP but he threw out the idea immediately and thought the hives were just a random affliction I'll have for a couple of years.

I had never heard of this gene mutation but here is a link to an interesting article that my sister sent to me..

http://stopthethyroidmadness.com/mthfr/

Hope this makes sense, was a mystery to me at first and I'm still searching for clues as to why I feel so rubbish everyday.

 

I think I know what you're taling about. My sister tested positive for the inability to properly convert B6. The inability to convert B12 is more common. I buy a coblimated B complex. The thorn line all is coblimated Bs. I've found this to be a huge factor in my health, as when the thyroid drops, the adrenals go downhill, liver isn't functioning and stomach hurts, so I stop taking the supplements bc the stomach can't tolerate them, which it turns out, makes my downward spiral worse, I suspect bc of the B vitamin issue. Once I'm back onthe coblimate Bs, I improve quickly.

I also do frequent and regular liver/gallbladder cleanses, because they tend to get jammed up withthe low thyroid. The liver cleanses have been a life-saver!

Hope that helps.