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20361495 tn?1496079143

Thyroid Cancer history and My first major setback

This will be long but I really hope someone can help me with this. It includes thyroid cancer history, overmedicated, to heart medication, now hypothyroid and still heart problems. And Im only 22 (I know this can happen to anyone any age but this is tolling).

So a little background. I found out i had thyroid cancer at the beginning on 2011, got surgery for a total thyroidectomy and 1 parathyroid to be taken out because it was cancerous. I was going to the 11th grade that year and we had found out luckily during a normal check up at he doctors. I had been sleeping a lot and suffered from anxiety attacks and shortness of breath. So got the surgery, went great, beautiful scar. Did radioactive iodine treatment. Started meds pretty soon after. First endocrinologist i got started my synthroid off too high. Literally got high heart rate 15 minutes after taking it. After convincing my mom this was happening we saw her and she wanted to start anti depressants. We left her.. Found another that I stayed with until about 6 months ago. From that point out, I was perfect. They cleared me of being cancer free. I started seeing endo every 6 months felt great. Went off to college, not one problem. I gained weight was stressed but no problems at all. Got back home around June 2015 from college. Was doing good in the winter my weight was up to 164, they upped my synthroid dose. This is where I think my body started losing it. I begin taking it. After realizing i had gained so much weight i lost about 10 lbs by the summer of 2016. I began having heart palpitations. They were bothersome so i did set up an appointment with my endo (still pediatric endo) in Aug. She told me if anything my levels were near hyper but we wanted my tsh suppressed and she told me maybe i was becoming allergic to the fillers and we'd switch brands. OK. We hadn't looked at my weight change or anything. I finished off the last of my synthroid and started Levoxyl 112. Palpitations ceased for a little then would come back. I was referred to a cardiologist. Did EKG, echogram, perfect heart. Then in January i went to a episode of tachycardia. By time i got to the hospital it slowed down. They told me nothing was wrong. A month later it happens again. Got to the hospital, it slowed, nothing. They gave me a heart monitor for 24 hr. Ok, Soon as i took the monitor off the next morning, tachycardia. We speeded to the hospital, luckily they caught it this time. They took my blood levels for tsh. TSH 0.001 @ the ER. This was 2 months ago, they prescribed a beta blocker, metoprolol. In the middle of this, i truly can't remember but I did have a appointment with my new endo. He just wanted to take my levels first then figure some things out. My tachycardia episodes were happening before he could even get back to me. Over the month while i was on the beta blocker i was told to stop the thyroid meds for about a week and a half cause i was obviously being overmedicated earn i started them back up i'd have breakthroughs of tachycardia. I told him to take me off of the levoxyl, put me back on synthroid. It was like pulling teeth. We wanted to get off this heart med because i felt horrible. Finally he listened after i requested they take bloodwork to see where my TSH was. It was at 20. I told the heart doctors and they told me wean off the heart meds. And i started Synthroid 50mcg. This was a month ago. So the withdrawal from the heart meds was hell. And I know they say its nothing to come off of but uhm, they lied. Well coming up to a week ago I've been feeling off. Short of breath, spacey, tired, insomnia, lost of appetite (caused by heart meds, i was barely eating for almost 3 weeks), low blood sugar (I'm pretty sure from other symptoms), low blood pressure when i take a shower (could be from heart meds also), Acid reflux (could be from heart meds). I went to the er for short of breath to make sure the heart meds didn't damage anything. They said i was all clear. Well, two days ago, in the middle of the day, i had a severe anxiety attack along with tachycardia and heart palpitations. Went to the ER. Nothing again. They did check my TSH. 57 and T4 was "in range". Ive been in bed these last two days because I'm scared. This morning i had a short episode of tachycardia. I do have blood work on Tuesday but its almost pointless as i will be going to a new Endo because this one only looks at antibodies, TSH  & T4.

Im lost and i feel like I'm where i was b4 they found out i had cancer. Im hopeless and scared. I don't want to die. The heart is nothing to mess with. When they put me on beta blockers they were going to give me medicine to stop and restart my heart because it was up at 180.The heart doctors did say it was only sinus tachycardia but I know if my heart is "healthy" which I've been told since this situation, then i do not have a heart problem. So what in the heavens is going on?

I know i need to be looking at T3, my appointment with the new doctor isn't until June 22... i don't feel like Im going to make it.
Any words of encouragement will help. Anything suggestions, similar experiences. Anything. Thank you.
Sorry for any typos.
4 Responses
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Avatar universal
From your symptoms and your test results I'd say that you basically have two problems.  One is that after having a thyroidectomy, it is most likely that your med dosage has never been adequate.  Obviously you need a full daily replacement amount.  Even the 112 mg of Levoxyl is unlikely to be adequate, and at other times you have been on much lower doses than that.   This has most likely been due to the doctors adjusting your med dosage based on TSH, which doesn't work for most people.  The second problem is that your body was likely not adequately converting the T4 med to T3.  Doctors have been taught and like to think that T4 is always converted to T3 as needed; however, there is extensive scientific evidence to the contrary.  

From a very long list of symptoms that may be related to hypothyroidism, following is a listing of heart related symptoms.  



    High blood pressure
    Low blood pressure
    Slow/weak pulse (under 60 bpm)
    Fast pulse (over 90 bpm at rest)
    Arrhythmia (irregular heartbeat)
    Skipped beats
    Heart flutters
    Heart palpitations
    Chest pain
    High cholesterol
    High triglycerides
    High LDL (“bad”) cholesterol
    Mitral Valve Prolapse
    Atherosclerosis
    Coronary Artery Disease
    Elevated C-Reactive Protein
    Fibrillations
    Plaque buildup
    Fluid retention
    Poor circulation
    Enlarged heart
    Congestive Heart Failure
    Stroke
    Heart Attack


So I think you need to call the doctor and talk about the low Free T4 and Total T3 result along with the high TSH and request a med dosage increase.  In view of your low Total T3, and the need for some immediate improvement I would even ask to switch to 90 mg of  Armour Thyroid or NatureThroid, which contains 59 mcg of T4 and 13.5  mcg of T3.   The 90 mg of those is equivalent to about 100 mcg of T4 only, which is less than you have been on in the past.  You will need more to adequately raise your Free T4 and Free T3 levels, but that would be a start.  If the doctor is reluctant to prescribe T3 type med then I would point out that your heart issues have most likely been due to inadequate thyroid med in the past, causing you to have low Free T4 and Free T3, and thus hypothyroidism.  

If the doctor resists changing and increasing your thyroid med, and you end up having to go the ER again, I would make sure to bring up your low Free T4 and low Total T3 causing you to be hypothyroid and have the cardiac issues, and maybe they will help get you an increase in med dosage, until you can find a good thyroid doctor that will treat clinically instead of just based on TSH.    
Helpful - 1
Avatar universal
There is no need to freak out over the TSH level.  TSH goes up logarithmically compared to changes in Free T4.  The problem I see is that your FT4 is much too low, compared to any ranges I see for Free T4.  Please clarify the T3 result.  I assume that is Total T3 and the ranges are usually like 87 - 190 ng/dL.  Can you confirm if that is .72 or 72, and the measurement units?
Helpful - 0
1 Comments
The range is 0.97 - 1.69 ng/mL, Im .72
Avatar universal
In the future you should always make sure they test for both Free T4 and Free T3.  You need to know both.  Doctors frequently assume that T4 med is always converted to T3 as needed, but that is not the case.  In addition you should make sure you always get a copy of your lab reports, and write on there how you were feeling and what meds/supplements you were taking.  Those become very useful for future reference.  Since you have never been tested for Reverse T3, you should request that along with the FT4 and FT3. If the doctor resists, be persistent in requesting at least Free T4 and Free T3.

Since hypo patients are so frequently deficient in Vitamin D, B12 and ferritin, those should be tested and then supplemented as needed to optimize.  D should be at least 50, B12 in the upper end of its range, and ferritin should be at least 100.

As you said you have very little test results in hand.  Those you listed above show a FT4 that I assume is very near the bottom of the range, which is inadequate for many people.  In addition you don't even know your FT3 level, so you don't know if your body is adequately converting T4 to T3.  I suspect that your FT4 and FT3 levels have never been adequate since your thyroidectomy and hypothyroidism is well known to cause symptoms like you have mentioned.  So you absolutely need to know your FT4 and FT3, and I would push for a Reverse T3 also.

A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms.  Symptom relief should be all important, not just test results.  So when you see the new doctor it would be a good idea to not only request the above tests, but also ask if the doctor is willing to treat clinically, rather than just based on lab results.  I would also ask if the doctor is willing to prescribe T3 type meds like Armour Thyroid and Cytomel.  If either answer is not then you will either have to persuade the doctor to get what you need, or find a good thyroid doctor that will do it.  In prep for your appointment I highly recommend reading at least the first two pages of the following link, and more if you want to get into the discussion and scientific evidence supporting all that is recommended.  

http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

Please let us know results from your doctor appointment, and test results as well .  

Helpful - 0
2 Comments
I will. Thank you so much. I sadly went to the Er again last night, they caught PACs on the monitor so of course they said they were benign but ... ah so frustrated.
oh boy. Im over here freaking out.

TSH 3rd Gen = 96
Free T4 = .8
T3 .72

My TSH has literally went from 57 to 96 in less than 4 days.
Avatar universal
Wow, you have really been through it.  Sorry you are continuing to have problems.  There are a number of experienced and knowledgeable members here so I am sure we can help.  We have lots to discuss, so let's start with the following.

First please tell us your initial starting dose of Synthroid, which I assume you started in 2011 or shortly after.  Then tell us about your dose changes and when they occurred.  Also, please list all your TSH and FT4 results (and reference ranges shown on the lab report), and show dates for those so we can compare to dose changes.

How did you choose the new doctor you will be seeing on June 22?  Is he supposed to be a good thyroid doctor?
Helpful - 0
1 Comments
Hello. I believe it was 75mcg. I was 132 lbs. I would LOVE to tell you my results but I never have received them. Im just now learning to record what I can. The most recent was my ER visit two days ago.
TSH 57
and T4 .8


I chose her from RateMD. Apparently she's good and treats a lot including heart problems (Im sure related to endocrine problems).
Sorry I don't have much info :(
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