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High Tsh normal T4- help!

Jan 2021 TSH 3.95 and T4 1.14
June 2021 TSH 7.53 and T4 1.16
My doctor will not treat me until my TSH hits 10. I do not feel well. Tired, anxiety, irregular periods, dry skin, hoarse voice, etc. This month my period has lasted 3 weeks! His response is most women my age have those same symptoms. I’m 48. I plan to get a referral to an Endocrinologist for a second opinion but am unsure of how long that will take. I’m looking for your opinions and advice. Is there a magic number before treating a patient?  Thanks in advance.
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Avatar universal
You have lots of good feedback from Sarahjogs already.  I would just add that the only time TSh is useful as a diagnostic is when it is at extreme levels, confirming overt primary hypothyroidism.  All other forms of hypothyroidism need to be diagnosed and treated based on symptoms, along with levels of the actual thyroid hormones, Free T4 and Free T3.   Free T3 is the  biologically active thyroid hormone that essentially creates the metabolism of your body.  Free T3 is that important, yet most doctors don't bother testing and largely ignore it.  

You don't necessarily need an Endo.  they are typically rigidly depend on TSH for diagnosis and treatment, which does not work for most hypothyroid patients.   To understand what is needed, I suggest reading my paper, linked in the first message on this site.  

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Avatar universal
I'm not going to comment about the thyroid hormone levels because there are people on here that know a lot more than me about that  (although your TSH is high and would indicate hypothyroidism, especially if your free T4 is in the bottom half of what your lab considers "normal range").

I just wanted to share what happened with me since you mentioned irregular menstrual symptoms that might be related to hypothyroidism.  I had very heavy, and prolonged periods (lasting 18-20 days, they were only very heavy for a small portion of that time), which got much, much worse after my thyroid was removed in 2018.  It took about 6 months for me to get back up to a "normal" thyroid hormone level after my thyroidectomy completion surgery.  My endocrinologist told me the heavy periods were a hypothyroidism symptom and should go away when I got to a better thyroid hormone level, but they did not go away (they also made it impossible for me to get to a stable thyroid hormone level because I was losing so much blood every month, and, despite me telling all my doctors about my heavy periods my PCP, ENT, and endocrinologist did not bother testing me for anemia, I would not find out I was anemic until after 2 thyroid surgeries and a full 20 months later).

I finally (after having an extreme anxiety spiral that I'm pretty sure was due to dysregulated estrogen levels) went to the gynecologist, terrified that my very heavy bleeding (which unbelievably got worse towards the end of 2019) was caused by something like uterine cancer since I was "no longer hypo" -- please do not think your irregular bleeding is caused by cancer - a lot of things can cause heavy/irregular bleeding, but in my anxiety spiral my brain jumps to the worst case scenario, and that just fuels the spiral.  

It turns out that I a.) was anemic, and b.) had a very large fibroid.  I don't know what caused the fibroid growth, but I do know hypothyroidism can cause very heavy and prolonged periods (which I had for years leading up to my eventual thyroid diagnosis), that the heavy periods are thought to be related to estrogen dominance (higher estrogen to progesterone ratios than what is normal), and that higher estrogen levels are also thought to fuel fibroid growth.  After an exploratory surgery in Jan 2020 (where I learned I had a huge fibroid and was told I would probably need a hysterectomy) and months on estrogen suppressing drugs (so they could safely remove the fibroid and not do a hysterectomy), the fibroid was removed, my thyroid hormone levels stabilized, and my periods have returned to completely normal, and a lot of my hypothyroidism symptoms went away (I still get afternoon fatigue almost everyday, but it is a lot less than it used to be).  I'm also experiencing much less anxiety in general -- I do not know if this is because a.) my estrogen levels are less erratic or b.) I'm finally healthy after several years of major health issues.  It is incredible how much my hypothyroidism over the past several years probably fueled my anxiety - I have a very different perspective now in hindsight - physical health and mental health are tied together in so many ways, and I think in my case, my anxiety was hormone related, and now when people talk about a "mental health" problem as if it is a less legitimate health problem  or a character flaw, I get frustrated.  Mental health is health.

Anemia plus hypothyroidism can exacerbate many, many hypo symptoms, and I think this is what made my life a living hell for about 1.5 years after my thyroid surgery.  (It also made it much harder to get to a stable thyroid hormone level.)

Why am I sharing all of this?  If you suspect your prolonged bleeding is related to your thyroid hormone levels, I recommend getting it checked out sooner rather than later, just to make sure that hypothyroidism is the cause and rule out other potential causes like fibroids or polyps, or something else that can cause irregular bleeding.  (I had three periods - one in December 2019, two in January 2020, where I thought I might pass out because there were 36-48 hours of extremely heavy bleeding each period.  The volume of blood coming out of me was horrific, and unbelievable to think about now, in hindsight.  It is amazing I did not need to go to the ER.)  This was a fixable problem for me, but I wished I had gone to the gynecologist much, much earlier, I just thought (and was told by doctors) that my menstrual problems would resolve themselves when my thyroid levels stabilized.  (I did have a gynecological exam by my PCP in March 2018, when I was experiencing these problems, and shared just how heavy and prolonged they were, but in hindsight really wish I had followed up by going to a gynecologist after my June and August 2018 thyroid surgeries - I was so hypo and so focused on fixing the hypothyroidism and just getting through each day at that time, and convinced if I fixed my hypothyroidism my periods would go back to normal.  I was also not thinking clearly for a very long time).  

I'm not saying that you have a fibroid, I just thought I'd share what happened with me and recommend you at least get the menstrual issue checked out, even if you can't get your hypothyroidism treated in the meantime.  I don't want someone else to have to go through what I went through if it is preventable.

A period lasting 3 weeks is not normal.

I'm sorry you are going through this - when I first went to the doctor for lumps on my neck (which ended up being a multinodular goiter) and with my heavy/prolonged periods being one of many hypo symptoms, my TSH was 3.14 and I was told this is "normal" and that I didn't have hypothyroidism.  It turns out my thyroid was extremely inflamed and being destroyed by my immune system (so much so, that to determine if one of my suspicious nodules was cancerous after removing half my thyroid, they had to send pathology out to a different hospital for a second opinion because too many immune cells were making it hard to determine what was going on in the nodule, and my ENT/thyroid surgeon, who does hundreds of thyroid surgeries a year, commented about how inflamed the whole thing was).  Doctors, for whatever reason, often don't believe patients when they talk about their hypothyroidism symptoms, and it is extremely frustrating.  I walked out of my endocrinologist's appointment in August 2019, a full year after my second thyroid surgery, in tears because my endocrinologist and the resident did not believe I was hypo based on my tests, despite telling them about the extreme afternoon fatigue I was still experiencing, and all the cognitive and menstrual symptoms.  I'm 90% sure my gynecologist did not believe me when I told her about my very heavy and prolonged periods (did not believe they were "that heavy" or lasted that long) until the exploratory surgery in Jan 2020, where she discovered a huge fibroid (which they removed part of but had to stop during that first surgery because it was bleeding so much).  

I don't know how much of my anxiety was fueled by doctors constantly telling me that I was fine, that I wasn't experiencing the symptoms I was experiencing, and family members not understanding what I was going through and constantly telling me I should "try harder" to not be extremely fatigued in the afternoon, but it certainly wasn't helping.
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Wow! Thank you so much for your response. I appreciate it hearing your story. I do plan to call my pcp tomorrow and ask for an ultrasound as I have a history of ovarian cysts and just want to make sure there is nothing else that could be causing the irregular bleeding. My brain always jumps to worse case scenario and he knows that. If he says no then I will ask for a referral to a gynecologist. I plan to ask for a referral to see and endocrinologist as well.
I’m so glad you are feeling better. Do you know why your immune system was attacking your thyroid?
Again thank you so much for your reply!
Yes, I should have mentioned this in my post it was already really long.

I have Hashimoto's, which is an autoimmune disease that attacks the thyroid.  Hashimoto's is the most common cause for hypothyroidism for people who live in countries that iodize salt, including the US (where I live), so I suspected as soon as I realized all my random symptoms (fatigue, weight gain, feeling cold all the time, menstrual symptoms) were hypothyroidism, that I probably had Hashimoto's.

I asked for the test for Hashimoto's at two appointments at my PCP in March 2018, and at my first ENT appointment in April 2018.  At this point I knew something was very wrong with my thyroid.  It's an antibody test for two thyroid antibodies: anti-thyroglobulin and anti-thyroid peroxidase, and my PCP doesn't do the test in their office because it is a "frozen sample" (of blood).  By my first ENT appointment, I knew I had a seriously screwed up thyroid because I had done the thyroid ultrasound and knew I had a multinodular goiter - which was later described by my fine needle biopsy doctor/pathologist as bunch of nodules growing into eachother.  The only things that cause multinodular goiter (that I'm aware of) are the autoimmune diseases Hashimoto's (which most often causes hypothyroidism but early on can cause hyperthyroidism), Graves disease (which causes hyperthyroidism, which I did not have), and iodine deficiency.  So... I asked the ENT for the test for Hashimoto's and the resident who was in the room with me said that "she gets cold too" and that "lots of people get thyroid nodules" (which is true.  It turns out, lots of people do not get multinodular goiters though.)  So after practically begging the ENT to test me for Hashimoto's, and once again being convinced that my hypothyroidism symptoms did not exist and were all in my head, I was reluctantly given an order for a blood test for Hashimoto's (on a piece of paper, that I take to the blood test center).  I also had to go for a fine needle biopsy for my suspicious nodule (this was a tough time and there was a lot of thyroid diagnosis going on), and I think I waited for a few weeks to get the Hashimoto's test because my ENT and her resident convinced me I did not have Hashimoto's!  (My antibody levels were very high, it turns out that I did have Hashimoto's, and probably had it for a very, very long time.  And that's what my ENT said after removing half of my very inflamed thyroid.)

So during the time in between being told repeatedly that I didn't have Hashimoto's and finding out that I did (probably about 1-1.5 months), I convinced myself that my love of running had destroyed my thyroid, because if it wasn't lack of iodine and it wasn't autoimmune, there had to be some reason, and possibly constantly doing long runs (2-2.5 hours, at least once a week) and then running the next day without fully recovering -- maybe that was what was pushing my body to extremes and destroying my thyroid.  (There is plenty of info on the internet suggesting endurance sports can have an effect on the thyroid.)  I stopped running as far (keeping it under 10 miles), and stopped running as often because I was worried I was doing harm to my thyroid.  (I was very anxious during this time period, and there was a lot I did not understand.)

In hindsight, I think running had helped cover up  many hypothyroidism symptoms for years because I feel so good when I'm running often.  Running helps prevent my afternoon fatigue (in my post thyroid world - I don't know how it works for people with thyroids, but if I run in the morning I feel much better than if I don't).  If my PCP had done the Hashimoto's test at that first appointment, I would have at least saved myself a lot of worry about whether I had "caused" my own thyroid destruction.  What causes Hashimoto's?  I'm sure some job related stress I was under in 2014 was a contributing factor, but, autoimmune diseases often run in families, and a ton of people are under constant stress and don't have their immune system attack their thyroids, so technically, it "is" my fault, but not necessarily from something I did to myself (and I no longer blame running).  Running helps my mood and helps give me energy, so sacrificing it because I thought I did damage to my thyroid from running probably did not help my anxiety.)

If possible, you could ask your doctor for the Hashimoto's test.  It seems like from my experience and others on this site, doctors are extremely reluctant to order the test, and I don't know why.  It is possible to have subclinical hypothyroidism, where you have a ton of hypothyroidism symptoms but your TSH is in the "normal" range.  I wasn't started on thyroid hormone until after my first thyroid surgery, when my TSH went from 3.14 to above 7... so it is surprising that your doctor won't treat until it gets over 10 (although I think that might be what they do in the UK).
I just wanted to add that Hashimoto's doesn't always lead to a multinodular goiter, and I believe my multinodular goiter occurred because I had mild, undiagnosed hypothyroidism symptoms for a very long time.  (And, I think having Hashimoto's slightly increases the risk for thyroid cancer, but most people with Hashimoto's do not get thyroid cancer - it was just a combination of things in my case and there is probably a genetic component for me since my grandmother also had a thyroidectomy.)
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