Thyroid disease – Hypothyroidism (low thyroid) – Part 3 of 5 – Do you need medicine?

thyroxine (T 4 )

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Do you recognize the chemical structure to the left?  If you are hypothyroid, that’s what you’re probably taking:  levothyroxine, the primary thyroid hormone in humans. 

No doubt your doctor prescribed this medication, but the question is why?  Were you overtly hypothyroid, with typical symptoms of fatigue, dry skin, constipation, decreased heart rate?  Was your TSH significantly elevated with depressed T3 and T4 levels, or was your TSH just a little elevated with normal T3 and T4? 

The most common reasons doctors prescribe Synthroid (Levothroid, levothyroxine) are:  1) mildly elevated TSH levels (with normal, compensated, T3 and T4); and 2) very high TSH levels (with normal T3 and T4, or depressed T3 and T4, with or without symptoms.) 

In humans, when the production of thyroid hormones (T3 and T4) begins to wane, the pituitary increases the amount of TSH (thyroid stimulating hormone) in order to stimulate the thyroid gland to produce more hormone.  Often this normalizes the level of circulating thyroid hormone in your blood.  Sometimes the thyroid cannot keep up, and the TSH rises higher and higher and symptoms begin to develop.  Occasionally a goiter (swollen thyroid) grows at the base of the neck.

Those with mildly elevated TSH levels (resulting in compensatory normalized T3 and T4 hormones) may not need medication.  Those with very high TSH levels, especially with decreased thyroid hormone production and symptoms of hypothyroidism, require thyroid replacement therapy to lead a normal life.

The question is, which are you?  If thyroid hormone therapy is unavailable, what will happen?  Will you die? 

If you’re one of the  patients who has experienced symptoms of hypothyroidism and whose TSH was extremely high at the time of diagnosis, you already have your answer:  you require medication.  Likewise, if you had 100% of your thyroid surgically removed, you’re in the same boat.  Without the medicine, symptoms will gradually develop, possibly leading to coma (and death, though I’ve never seen this happen). 

But most patients that I see actually have subclinical hypothyroidism, that is, their TSH runs a bit high (say 2 to 10 mIU/L above normal), but they have no symptoms.  Some of these patients I’ve observed over time without medication and have found that their TSH levels vary.  If one thinks of the underlying problem as an autoimmune condition (which it often is), this makes sense.  Other autoimmune diseases, such as arthritis, vary regarding severity of symptoms.  If the thyroid is inflamed to varying degrees with time, just as acne flares on occasion, then the T3 and T4 output would vary.  In response to this, the pituitary compensates by adjusting the output of thyroid stimulating hormone.  All this is to say that many of these patients do not require medication.  Compare this to another endocrine disease, that is, the patient with mild diabetes who requires little or no medication, and likely will never need insulin. 

You may not know which class you fall in.  Your doctor may not know either, if you were started on Synthroid long ago or with another doctor.  It is, however, possible to find out.

To know if you are this type of patient you need to discuss the following experiment with your doctor.  A patient’s dose of levothyroxine may be tapered or discontinued and the TSH monitored closely, perhaps once every month or two for a period of time.  If lowering or decreasing the dose is going to be a problem, generally an elevated TSH would show up before a patient experiences symptoms, thus allowing treatment to be promptly reinitiated. 

This depends, of course, on the patient.  For a patient in whom I suspect a total lack of thyroid production, I would taper the dose more slowly and/or monitor the TSH every few weeks early on.  An example of such a patient is one whose thyroid was irradiated for Grave’s disease.  Such a patient may have residual functioning tissue.  To determine if that is the case, the patient must be off medication (or on a reduced dose) to allow the TSH to rise, if it’s going to.

For a patient whom I diagnosed myself (or have documentation of a minimally elevated TSH level prior to therapy), simply stopping therapy and monitoring the result closely is an option. 

Of course, patients do this all the time – they just don’t monitor their blood tests.  They run out of medicine for a week or a month or longer and perhaps don’t feel any different.  Rarely do they actually become symptomatic.  It is possible to monitor your TSH level yourself, by collecting your blood and sending it to an accredited lab.  (Check online for available services.)

If you find your TSH is elevated by a few points, even 10 or 20, but your thyroid hormone output remains normal, then discuss with your doctor whether taking medication is mandatory – it may not be. 

I am not, however, suggesting you perform this experiment on yourself without physician supervision.  If your doctor already has evidence for which type of hypothyroidism you have, there’s no need to experiment.  But if not, please discuss the situation with him or her.  Better to know now, when testing is readily available, than to guess later. 

Although there are other rare forms of hypothyroid disorders, the above is applicable to the vast majority of patients. 

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About Cynthia J. Koelker, MD

CYNTHIA J KOELKER , MD is a board-certified family physician with over twenty years of clinical experience. A member of American Mensa, Dr. Koelker holds degrees in biology, humanities, medicine, and music from M.I.T., Case Western Reserve University School of Medicine, and the University of Akron. She served in the National Health Service Corps to finance her medical education.
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12 Responses to Thyroid disease – Hypothyroidism (low thyroid) – Part 3 of 5 – Do you need medicine?

  1. somugroup1 says:

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  2. Sid says:

    I have been taking the levothyroxine for about 7-8 months now. As I don’t have any prescription left, but am unable to meet the doctor, will doctors allow for prescription extensions without meeting them?

    {When a patient has recently been started on levothyroxine it is standard treatment to see the patient fairly often and measure serial TSH levels to make sure the dose is correct. If you’ve run out, your doctor will not be able to get a meaningful TSH result. I imagine if you called your physician and explained the situation he would give you a few months worth of medicine and ask you to see him in 2-3 months to reassess the situation. If, perhaps, this has already been done, then he may extend your prescription longer. If you can’t meet with your doctor, he will at least want to know why in order to schedule around your difficulties. Most doctors would offer you at least a month of medicine until you could get in to see the doctor. – Doc Cindy}

  3. Debbie says:

    I am extremely hypothyroid and hashimotos. Along with anxiety that I blame on the hypo,. I was diagnosed in 2001. I have tried a couple thyroid meds but find I am very sensitive to them and they make my symptoms worse and so I have not taken any meds in about 7 years. I do still have bloodwork done from time to time and thyroid cannot even be measured on scale! I was told it was off the board.

    I don’t want to die and I know that you can go into a coma but that is rare. I just want an honest answer as to can we survive this disease if we can never seem to get over our hatred of thyroid meds, and keep going untreated with severe labs? What about the million’s of people who are undiagnosed? This is driving me crazy. I do not want to die but I am petrified of medications and cannot seem to push myself to try the meds again. Is there a natural way to do this?

    • Doc Cindy says:

      Anxiety is not that common with hypothyroidism, though depression is. It’s possible that treating the anxiety might allow you to treat the thyroid problem. I don’t know in what way the medications made you worse, but in a case where a person is very sensitive to a needed medication, I would suggest starting at a very low dose, one unlikely to actually correct the situation, but one that may allow your body to gradually tolerate the medication, which can then be slowly tapered up to a therapeutic dose.

      If your thyroid is off the scale (and it would be useful to know if you mean TSH or T4 or T3) and you’re not slowly worsening, then it would seem unlikely that you’re going to die of hypothyroidism. Sounds to me like you need more information. Perhaps you could schedule an extended visit with your physician to understand all your options, or possibly see an endocrinologist. There are occasional patients who need special treatment.

      The closest thing to “natural” would be Armour thyroid replacement. Coleus forskolhii may have a stimulatory effect on the thyroid, but the effect is not well understood and certainly not standard therapy. Hope this helps, don’t give up. There’s usually an answer if you keep looking.

  4. Christine L says:

    Thanks for this article, Dr. Koelker. Are you suggesting in this article that a person with Hashimoto’s disease (autoimmune) could actually see their thyroid regenerate?? I was diagnosed with this about 10 years ago–no one else in my family has it. Also, after 15 years of deteriorating health (started in 1990) I was diagnosed in 2005 with 3 INTRACELLULAR diseases (Lyme, Bartonellosis and Babesiosis) for which I am still being treated. (I am seeing a tremendous amount of improvement in these lately–finally.) Because these are INTRACELLULAR, I believe that my immune system has been attacking my thyroid in order to access them, thereby destroying the thyroid cells. Therefore, if I can eradicate these microbes would my immune system stop attacking my thyroid? My endocrinologist says that he has never seen anyone’s thyroid come back from Hashimoto’s. What do you think?


    • Doc Cindy says:

      I’m hoping you are seeing an infectious disease doctor as well, since this is a very unusual constellation of infections. I have not seen a person with Hashimoto’s thyroiditis have their thyroid “regenerate,” but I have seen people with variable degrees of the problem. People with mild disease may require no medication. I’m sure many are not even diagnosed. Like other autoimmune diseases (such as rheumatoid arthritis), there’s always the chance the disease will remit, that is, enter an inactive stage. Most of the time we don’t know whether this happens, because we leave people on medication, which would mask the underlying problem.

  5. Richard from AZ says:

    I am wondering also, will there be a Part IV which will tell us (the people that require Synthroid ) ?? Alternatives to Synthroid/Levothyroxine and other meds for Hypo/Hyperthyroidism would be invaluable. Understanding the legal aspects of saying something on a blog today is almost like turning the key on your own jail cell. BUT, I would hope that their is some way a person would be able to get the message across to those of US that NEED this information.
    Thank you for the article, it was Very Informative and please continue to share this information as you can.

    • Doc Cindy says:

      Please see this site’s Disclaimer page.

      I see you’ve read Part III of hypothyroidism. Part II mentions neutraceutical grade thyroid medication. Anyone taking Synthroid could take the older prescription animal preparation instead (Armour thyroid). I have had no experience with the neutraceutical medicine, nor do I know any doctor who has. Nevertheless, you could purchase the OTC product and take it to your physician, who could estimate a dose for you, then check your TSH level for effectiveness. If you choose to do so, an update a few months from now would be appreciated.

  6. Kay D. says:

    I need to prepare for alternative med to replace Synthroid due to radiation treatment due to hyperthyroidism due to Graves. Thanks

  7. Robert says:

    Thanks Cynthia. In Part 4 will you be providing the alternatives to replacement Synthroid Pills after they are no longer available? Waiting for that part of your report in order to better prepare. As many people including myself may have had the radiation treatment and therefore already know we should be checking our conditions with our doctors for regular blood tests, Parts 1 and 2 seemed to lead towards a hopefully natural way of treating ourselves when Synthroid etc.. are no longer available. Thanks!

    • Doc Cindy says:

      This is obviously a popular question. See my reply to Richard above.

      Also, as soon as I have time (when people stop getting sick?) I hope to visit a butcher and see how they handle cow or pig thyroid. Assuming cows and pigs will be more readily available at TEOTWAWKI than Synthroid, the bovine or porcine thyroid tissue could be harvested, dried, and consumed in microgram quantities as replacement therapy. Amrour thyroid is porcine thyroid tissue. The neutraceutical brands are pork or cow thyroid. I am also looking into herbal remedies, but doubt they will be more effective than animal replacement therapy.

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