Potential Thyroid Issues-Need Some Direction/Information

[Machelle2016]

Several years ago I had some blood work done and the doctor said my thyroid levels were slightly off and requested follow up work. I honestly don't recall the details, just that the results must not have been serious enough for her to be concerned. Earlier this year I had some bloodwork done after months of feeling generally exhausted, sick often (lots of colds, sinus infections, etc), and like something was "off". The bloodwork indicated thyroid levels that were not normal and I saw an endocrinologist. She explained the results away by saying the fact that I take birth control pills caused the abnormal results. Several months later (now) I feel even worse...I am exhausted no matter how much sleep I get, I gained 40 pounds over the past two years and I can't lose it no matter how much I exercise or how well I eat, I'm very sensitive to heat and often wake up at night burning up (not night sweats, just actually feeling like I am a human heater), I sweat absolute buckets when I do sweat, I have some dizziness at times, I have had digestive issues...I pretty much can go down the list of thyroid related symptoms and I have a majority of them. I called the endocrinologist and requested a follow-up appointment sooner than scheduled. I went in for another blood test and the results are simply TSH 4.71 H and T4, Free 1.0

I honestly am not really sure what to do at this point. Most acquaintances warn me away from medication because they say it's a lifelong commitment if I start that. I'm following up with another doctor this week and plan to show her the results but I just don't know what to do. I don't know enough about thyroid imbalances to understand my results or what direction I should be headed in regards to treatment/no treatment. I'm hoping I can get some insight from others.

[Barb135]

Fortunately, I am familiar with reading test results, so I understand yours very well.  You're correct that we don't have to be outside the range to have symptoms.  Symptoms can occur at various points within the range, particularly, if results are too high or too low.  

We find that most people feel best if Free T4 is about mid range... your Free T4 is only at 20% of its range, so it's easy to understand why you have symptoms.

Unfortunately, there are those doctors that look only at TSH and who feel that it's not necessary to treat hypothyroidism until TSH gets above 10.  These are doctors that we recommend staying away from, because they invariably keep their patients ill. There are those of who feel that doctors should not be allowed to treat hypothyroidism unless they've been hypo, themselves, and have been treated by a doctor who shares their erroneous philosophy, so they understand what their patients feel like.

I wish you much better luck with the endo you're seeing later.

[Barb135]

I'm sorry you had such a horrible experience.  That doctor sounds a lot like many doctors we hear about.   We have had members who have had to see several different doctors before they found one that would listen to them.  In fact, I'm having similar issues, myself, at the moment and I've been on replacement hormones since 2009.  Hopefully, the endo won't be so rude and dismissive next week...

You said you had a Free T4 test done with a result of 1.0... what was the reference range for that?

[Machelle2016]

I'm not familiar with reading test results but I think the reference range is 0.8-1.8 ng/Dl. Yes, it was a really horrible experience. I couldn't believe all she did was tell me to eat a low carb diet and harped on how terrible birth control pills are to her. I know at different ranges different people can have various symptoms, I am getting frustrated at being dismissed simply because mine isn't abnormal enough (the doctor I saw told me it is a concern only if the patient has a TSH of like 10.00).

[Barb135]

Hi... I'm sorry you're having so much trouble; we'll do what we can to help work through your issues.  The first thing we need to know is what the reference range is for the Free T4.  Reference ranges vary from lab to lab, so they need to be posted with results for the best comparison.

Secondly, your friends may be right that thyroid medication is often a life-long thing, but wouldn't you rather take medication and feel well than not take anything and feel ill all the time?  It's no different from having to take a daily medication for blood pressure or if you were diabetic or had any other condition that required daily medication or even taking a daily vitamin/mineral supplement for that matter.  Please don't be put off by the thought of having to take a tiny pill once or twice/day - trust me, it's worth it...

That said, when you see the endocrinologist, I'm guessing they might tell you that you still don't need treatment, in spite of all the symptoms you have - not because you really don't, just because your numbers happen to be "in range..." and that's what they learn in med school.  

You should ask the endo to test Free T3, along with the TSH and Free T4, since Free T3 is the actual usable thyroid hormone, while TSH is, actually a pituitary hormone and Free T4 is considered a storage hormone that's not used directly.  It has to be converted to Free T3, which is used by nearly every cell in your body.

You should also ask to get thyroid antibodies tested to determine if you have Hashimoto's, which is an autoimmune condition in which the sees the thyroid as foreign and produces antibodies to destroy it.  Some people have Hashimoto's for years before actual thyroid hormone levels go out of range and doctors are willing to prescribe thyroid hormones, yet they have all the symptoms of hypothyroidism.   The antibody tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  

If you have Hashimoto's, some doctors will go ahead and start treatment before labs get too far out of range.  It would be nice to think your doctor might be one of those.

[Machelle2016]

Thank you so much for the reply. I just went to see a GP (I have severe anxiety with doctors due to an incident from the past) and it was a horrible experience. She basically told me my symptoms could be related to a lot of things, not necessarily thyroid issues, and I should just stop eating carbs and should stop my birth control pills. I left feeling completely unheard and overwhelmed so we'll see what the endocronologist says later this week. My test results say
Reference Range Lab
TSH 4.71 H mIU/L TP
Reference Range

> or = 20 Years 0.40-4.50