Thryoid medication intolerance?

[Jeanscrystal]

After 20 years on thryoid replacement hormone my body seems to be rebelling against it. After over a year of heart rhythm abnormalities, shortness of breath, terrible stomach bloating, overwhelming fatigue, and more; after numerous medication adjustments and brand changes there was no relief. Heart and lung studies were pretty normal with the exception of PVC's, probably med induced.

When labs showed I should reduce dosage I was completely off med for a week before getting new prescription and was startingng to feel better as one would expect. After reading about RT3 I went on a low dose of just T3 for a month. I felt better in most areas except heart rhythm. Even my joint swelling from the RA was decreased.

Went back on a half dose of levothyroxine and within two days was short of breath and having digestive problems. My labs showed my TSH to be around 20, with low levels of the T4 and T3 so I wasn't hyper. Have not been able to tolerate even a half doce of medication in many months. I know I must take the medication but I get so sick after it starts to build up in my system. My TSH is 85 and t4 T3 are barely registering although I don't feel bad until I bring the medication back on board, even Triosint, which is least likely to cause allergic reaction.

Any ideas why the medication is not agreeing with me? I have Hashimoto,s and RA, also cardiac neuropathy and perpherial neuropathy, and gastroparesis. To rule out other contributing medications, I am off all other medications except an occasional aspirin. I have confounded our local Endocrinologist, she suggests I seek out a more advanced endocrine clinic. Thanks in advance for any ideas.

[gimel]

To access the PM just click on your name and then from your personal page, click on messages.

Was the iron test you mention recent?  If so, what was the result and reference range?  I am still suspicious of low ferritin.  I would test for that.  Also wouldn't hurt to test for magnesium.  

[Jeanscrystal]

Hi, at this moment the test results aren't accessible but they were done a year after off Predisone. In two of the tests the first hour was a little higher than normal by a few points then the rest fell in the middle of normal, none were low or close to the low range. At this point none of the doctors involved believe there is any problem to pursue. I have some suspicion that the endocrine axis is malfunctioning beyond just the thyroid problems. I figure I'll just wait until it rears its ugly head since the specialists can't seem to believe there is a problem beyond noncompliance to medication.

I don't see the link you're suggesting. I am very conscious of healthy lifestyle habits and don't smoke or drink alcohol and I eat a fairly plain diet due to gastroparesis. I do read up on natural ways to deal with health issues and will look at articles relating to those issues.

With my many other health issues I am a confusing patient and it is apparently too hard for them to look at how one affects another and they pass the buck. I've been staying away from them until something is obviously broke. I do believe I can get my GP to order tests if there any any suggestions beyond what I have already done.

Thanks again

[gimel]

Was the urine cortisol test done when you were on Prednisone?  If so, the test result would have been skewed to the high side.  Also, like with many other ranges, just being barely within the range limit is not adequate for many people.  I am sending you a PM with links I cannot post on the Forum.  The links are about cortisol and low iron/ferritin.  From your reactions to the thyroid med, it seems there is definitely something out of kilter in the cortisol/iron areas.  What was the actual test result and reference range for the iron test you mention?

[Jeanscrystal]

Thanks for your info. I've had three different tests for cortisol levels, one a 24 hour urine test, although within normal range I still think an issue there. Was on Predisone for 18 months.

I am very familiar with all aspects of thryoid testing, etc. I have some medical background and understand most of the medical articles I read. I know TSH is ambigious for making judgements. My last tests were  very high 85 down from 101. T4 and T3 were barely registering, below .01, as expected not taking medication. Iron levels were well within normal, B12 is in the low normal and the D is very low. I have asked to resume b12 shots but Dr so stubborn at this point. Didn't know about vit D shots.

Because I react to the thryoid med about 5-6 hours after taking makes me think that should be a clue. I actually feel pretty good not taking it but I know it can lead to more trouble but it truly makes me so sick. I get all the symptoms of being hyper thryoid even after half a dose, as it builds over a few days I can't function through the symptoms and have to stop the med, a week later and I feel fine again, although each week I start over and try. I went off Famotidine and that at least helped with stomach issues but I still bloat terribly after taking the thryoid med. but my hair is growing back after being off Famotidine for a month. Thought it was falling out due to thryoid but surprised it is growing back despite thyroid.
Thanks again for answering my questions.

[gimel]

The TSH test is basically useless when already taking thyroid med.  That is because the TSH frequently becomes suppressed when taking adequate doses of thyroid med.  That does not mean that you are automatically hyper, unless you do have hyper symptoms due to excessive levels of Free T4 and Free T3, which was not the case.  There are scientific studies that have shown this to be the case.  I and several members have a TSH of .05 of less for many years with no hyper symptoms.  

Many members say that relief from hypo symptoms such as those you mentioned required Free T4 at the middle of the range, at minimum and Free T3 in the upper third of its range as needed to relieve symptoms.  A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve hypo symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not TSH results.  

In addition, hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin.  D should be 55-60, B12 in the upper end of its range, and ferritin should be 70 minimum.  If not tested for B12, then you should do so and supplement to optimize.  If you cannot get your D level adequate, then injections should be considered in order to optimize.  If ferritin levels are low, there are a number of symptoms that can occur.  In addition, if ferritin or cortisol are low the raising thyroid meds can sometimes result in unwanted reactions.  So I suggest that you should make sure of your cortisol levels with a 4 test diurnal saliva cortisol panel and also a serum ferritin test.  Please post your iron test results.  Even if within range, that does not mean that ferritin level is adequate.  Note the following info.

Iron Deficiency Anemia

Low iron, or more specifically, low ferritin, is one of the most overlooked causes of low thyroid function. Ferritin is the stored form of iron that is used by the cells and a better measure of available iron levels than serum iron.  Iron is a component of multiple enzymes involved with cellular metabolism, so low iron means poorly functioning enzymes, and less than optimal metabolism.  Those with low iron also have low T4 and even lower T3 levels. Iron deficiency also lowers thyroid peroxidase (TPO) activity.  TPO is an iron-containing enzyme that initiates the first two steps in thyroid hormone synthesis.

Low ferritin can cause negative reactions like palpitations, nervousness, and anxiety in someone starting thyroid hormone replacement.  Someone described it like being shot out of a cannon.  It is therefore imperative that ferritin not be at the bottom of the range before starting thyroid hormone medication."

So if it were me I would address the issues with Vitamin D, B12, and ferritin first.  If optimizing those does not clear things up for you to get your thyroid med dosage back to optimal, then the next thing I would do is get the diurnal saliva cortisol tests done.  If cortisol is consistently low I have read that increases must be done slowly–weekly thyroid increases are too much too soon and do not give the body time to adjust.  Some people are so sensitive that they can only raise 1/4 grain of desiccated thyroid or 12.5 mcg of T4 every 12 weeks.

[Jeanscrystal]

Over the 20 years my dose has gone up and down, tried all available brands. Last summer my TSH was 0.01 when I needed to reduce dose. Since then I've had all the various thryoid tests and several tests for adrenal function, parathyroid tests, all fell within normal levels. I have seen eight different specialists over this year from cardiology, endocrie, neuro, ENT, Rheumatolgists, etc. I do have numerous health issues mostly from having autoimmune problems for those 20 years as well, all contribute. Iron levels okay, very deficient in vitamin D and cannot get it up to normal over two years. I feel so much better off the medication and so sick when I start it up, even taking small dose and working up. Can't get near a normal dose before feeling intolerably ill. Quite a dilemma.

[gimel]

What were the lab results that showed you should reduce dosage?  Was the med and dosage the same for the 20 years?  Have you tested for diurnal cortisol levels?  Have you tested for ferritin level?