Still losing eyebrows over a year later

[Amee_B]

I have been on 25mcg of levothyroxine for over a year now and my eyebrows are still falling out. I had high TPOab and high TSH. I currently have general thinning of hair all over my body (nose hairs, eyelashes, head, arms etc). I was told that starting levo would take these symptoms away, what could be the problem? Going to my GP is very pointless, and I am yet to find a decent doctor/endo yet. Help! Thank you.

[gimel]

A very effective explanation you can give your doctor would be to relate the ranges for FT3 and FT4 to the range for TSH.  The range for TSH was established many years ago by statistically analyzing the data base of TSH test results.  The decision was made to establish the range limits so that about 2.5 % of people would exceed the top limit and would thus be considered as hypothyroid, and 2.5 % would be below the low limit and thus hyperthyroid.  Notice that this arbitrary decision was just an assumption about the incidence of Hypo and hyper people.

Over 8 years ago, the AACE finally decided that clearly a lot more than  2.5 % of people are hypo.  So they went back and purged from the data base for TSH tests, all those patients that were suspected as possibly being hypothyroid.  After again statistically analyzing the purged data base of TSH results, they recommended changing the range to .3 - 3.0, which was a huge change from the old range of .5 - 5.0.  

Now, realize that the reference ranges for Free T3 and Free T4 were established the same way as done originally for TSH.  The ranges for Free T3 and Free T4 have never been revised like done for TSH.  If the data bases of Free T3 and Free T4 test results were purged as was done for TSH, the new ranges would be approximately the upper half of the current ranges.  Having a background in statistical analysis, I previously estimated that the range for Free T3 would change from 2.3 - 4.2 P g/ml to about 3.2 - 4.3, and FT4 would change from .60 - 1.50 ng/dl to about 1.0 - 1.55.  Is it hard to understand why so many people with FT3 and FT4 test results in the lower half of the range have hypo symptoms?  I think not.

Anyway, I thought you might be able to use this information with your doctor.  By the way, for your Free T3 level and reference range, for you to be just at the average of what I think the corrected range should be, your Free T3 level would have to be about 6.1.   Any wonder why you have hypo symptoms?

By the way, there is plenty of evidence to support the importance of adding T3.  It is just that past practice is so strong that changes move glacially.  For example, most labs and doctors in the U.S. still are using the old uncorrected range for TSH, 8 years after the AACE recommended changing it.  With your National Health System, I expect there is lots of pressure to do things consistently throughout the system, as dictated by NHS.  Doctors that try to question that approach are pressured to comply.  Have you ever heard of Dr. Barry Durant-Peatfield that practices in the UK?  He published a book called, I think, called "The Great Thyroid Scandal, and How to Survive It."   Ultimately his license was pulled and he had to go to court to regain it.  

Definitely there are some doctors in the U. S. that understand the problems and are willing to treat their patients clinically.  I may have given you this link before.  It is a letter written by a good thyroid doctor for patients that he sometimes consults with from a distance.  The letter is sent to the Primary Doctor of the patient to help guide treatment.  Compare clinical treatment to what you are getting.

http://hormonerestoration.com/files/ThyroidPMD.pdf

[Amee_B]

When I chose to see an endo, I tried to find one that prescribed T3, and maybe understood a bit more about it, but he just said that I only had enough leeway to alternate between 25 and 50 mcg.

It was Free T3 that got tested which came to be 4.4, the range was 4.0-6.8. I thought that was quite low n explained to my doctor the importance of T3, but she still wouldn't believe me and just forwarded me to an endo as I could see she was getting frustrated.

I will definitely read the articles and then show them to my doctor.

Could I ask, how is it that getting prescribed T3, or a combination is easier in the US, than in the UK? I know that it's because there isn't enough evidence to support the importance of adding T3, but why is it easier in the US, and why can't the UK be the same?

[gimel]

Going to an Endo won't assure you of a good thyroid doctor.  Many of them specialize in diabetes, not thyroid.  Also, many of them have the "Immaculate TSH Belief", by which they only pay attention to TSH test results. That is very wrong.   Others that do go beyond TSH often only use "Reference Range Endocrinology", by which they will tell you that any test result that falls in the so-called "normal" range is adequate for you.  That is also wrong.  The ranges are far too broad.  Many of our members report that symptm relief or them required that Free T3 was adjusted into the upper part of its range and free t4 adjusted to around the midpoint of its range.  So your best bet may be to work on your current doctor to get him to understand the value of clinical treatment, including T3 meds when necessary.

So your doctor would not consider T3 because you are on such a low dose of T4.  And you are on a low dose of T4 probably because they are dosing you based on your TSH.  Sounds like a dead end street.  

When you say that you got your T3 checked, was that Total T3 or Free T3.  Free T3 is the active part of Total T3.  Free T3 is the most important to know.  

I would again suggest that you read the articles in that link I sent by PM, and pick the ones most pertinent, such as the ones about TSH being inadequate, and about the importance of Free T3, and the one about the ranges being too broad.  Then I would give your doctor a copy of each and tell him that you know that hypo patients taking T4 meds frequently have levels of free T3 that are too low in the range, resulting in hypo symptoms and that you want a med with T3 in it to increase your level to relieve symptoms.

[Amee_B]

I have done lots of research and did get my T3 levels checked. I personally thought they were a bit low, and even asked my local pharmacy if they stock T3, which they do, but when I explained to my doctor the importance of T3, she didn't listen and just said the levothyroxine should be ok.

I then went to a private endo who has put me on mon-thurs 25, fri-sun 59, and I have been on this for nearly two months, but I feel no different. He also said that he would not prescribe T3 to someone on such a low dose as it is very potent.

My dermatologist doesn't think my thyroid is responsible for my hair loss if my levels are ok and thought it was solely due to my low iron. But my iron levels are up now and she has decided to put me on minoxidil.

I understand that doctors aren't Gods, but it's not een funny how little local GP's know about treating it. I don't even know where to start looking for a good endo. I have no problem telling my doctor what I want, I could provide her with all the research possible, but er most likely solution is to just send me to an endo

[gimel]

Are you being tested beyond TSH?  If not, I want to reiterate that TSH is totally inadequate to diagnose and treat a hypo patient.  Also, being on that small dosage of T4 for over a year does not sound like your doctor is taking proper care of you.

You need to be tested for the biologically active thyroid hormones, Free T3 and Free T4.  FT3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that FT3 correlated with having hypo symptoms, while FT4 and TSH did not correlate.  TSH doesn't even correlate with FT3 and FT4 adequately to be used as a diagnostic, much less correlate with hypo symptoms.  Somehow you need to get your doctor to understand this and treat you clinically, or you will continue to suffer.  

As an alternative, I suggest that you consider this advice from a fellow UK member under similar circumstances.  "What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

So I will supply you by PM a link to great info on thyroid issues.  Then you can prepare yourself for your next appointment with the doctor, and follow the advice to TELL THEM WHAT YOU WANT.  And what you want is to be tested for Free T3 and Free T4, and then to be treated clinically to relieve symptoms.