Do you ever feel good again after thyroid surgery?

I had the right side of my thyroid removed in July of 2010.  I had a benign tumor.  Three days after surgery, I experienced stroke like syptoms (symptoms).   They did a MRI when I first started having these symptoms and discovered gray matter on my brain. The blood tests showed my liver enzymes and ammonia level were elevated.  (They were normal before surgery.)  They told me my slurred speech and trouble walking and remembering things was caused by anxiety.

My slurred speech continued on and off until I was off of the pain medication for surgery.  I was referred to a nuerologist who wanted to do a lumbar puncture to rule out MS and other things because of what the MRI found.  This was in September.  I ended up with a spinal headache and put back on pain meds.  I ended up with slurred speech and trouble walking and remembering again.  And was put back in the hospital for another 5 days.  The lumbar puncture was normal.   And as soon as I stopped taking the pain meds from the lumbar puncture, my speech and walking went back to normal.  

This time I was referred to a ruematologist for an autoimmune disorder.  He did multiple blood tests to test for lupus, sjogrens and other autoimmune disorders.  Everything came back normal. But he still thought I could have some sort of mild lupus or mild sjogrens.  

I have not had any more speech or walking problems since my lumbar puncture in September of 2010.  Although, when I miss my dose of fish oil my brain feels like it 'stops' for a second every now and then.  I have had to start taking calcium and vitamin D supplements since surgery.  

My dr. is finally happy with my thyroid levels.  I am on Levoxyl and Cytomel.  But I still don't feel right.  I don't have hardly any energy.  I am tired all the time.  I get frequent headaches. I have gained  30 pounds, even with exercise.  My liver enzymes were down to normal for about a year and now they are back up again.  When they did a CT scan on my abdomen for my liver, they found that my uterus and my left ovary is enlarged.  Since my surgery in 2010, I have felt good for problably about a month.  Has anyone ever experienced these stroke like syptoms (symptoms) after a thyroid surgery?  Does anyone have any ideas how to feel good again and to lose weight?

[gimel]

The way to feel good again and have normal metabolism is to get your Free T3 and Free T4 levels (not the same as Total T3 and Total T4) high enough in their ranges to relieve hypo symptoms.  

Please post your thyroid related test results and their reference ranges shown on the lab report so that members can assess the adequacy of your testing and treatment.  Also, please have a look at the 26 typical hypo symptoms shown in this link and tell us which ones you have.  

You mentioned taking both Levoxyl and Cytomel.  What is your daily dosage of each?

[familymom800]

My TSH was 2.590 with the reference ranges 0.450-4.500.  I take 5MCG of Cytomel and .1MG of Levoxyl.

Which link did you want me to look at?  I can't find it.

[gimel]

Sorry, I forgot the link.

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html

TSH is totally inadequate as a diagnostic with which to dose a thyroid patient.  TSH is a pituitary hormone that is affected by so many variables that at best it is an indicator to be considered along with more important indicators such as symptoms and also the levels of the biologically active thyroid hormones, which are Free T3 and free T4 (not the same as Total T3 and Total T4).  Free T3 is the mos timportant because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.

So you need to raise the level of your Free T3 as necessary to relieve symptoms.  The first step would be to request testing for Free T3 and Free T4, so that you know your current level.  If the doctor resists then you should insist on it and don't take no for an answer.  I would also suggest that if you haven't been tested for Vitamin D, B12, ferritin, and a full iron test panel, then that should also be done.   If you will get those tests done then post results and reference ranges here, members will be glad to help interpret and advise further.  

[danie17075rm]

I have not had stroke like symptoms, but since I have had my thyroid removed in August I have became more hypo (even though my meds are increasing), anemic, I have low calcium, low vitamin D, and my blood sugar is low.  I also have recently developed this pins and needles feeling on the left side of my head by my eyebrow along with a headache.  It will NOT go away.  My docs think I have anxiety and will not test me for anything.  I am severely hypo still so I am hoping once I normalize these feelings will go away some.  I understand what you are going through.  Sometimes it feels like an endless nightmare.  

[familymom800]

Thank you, gimel, for all your suggestions.  I will get more blood work and ask the doctor to run these specific tests.  I will post the results when I  get them back.  

Here are the symptoms I found on the website you gave me to look at:
Feeling tired  
Weight gain
Slow movement and speech
Constipation
Increased sensitivity to cold
Joint and muscle pain, aches, and stiffness
Pale, dry, rough,  skin
A horse voice
Heavy and irregular menstrual periods
Depression
Slowed heart rate
Swollen ankles
Difficulty catching your breath
Decreased ability to exercise

[familymom800]

Thank you for your post danie17075rm.  I'm sorry you are struggling with this thing as well.  It's too bad that with all the advanced technology these days, they can't figure out thyroid problems.  My doctor has told me I need to be on antidepressants.  I have told him that I don't need antidepressants, I just need to feel better.  

I started to use liquid vitamin B this weekend and actually had a little bit more energy.  You might want to try that.  

[gimel]

During your next discussion with your doctor keep in mind that a good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  I say that about TSH because when taking thyroid meds, TSH an even worse indicator than before meds.  Symptom relief should be the ultimate goal, not just test results.  Test results are valuable mainly during diagnosis and afterward to track Free T3 and free T4 as meds are revised toward symptom relief.

You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance.  The letter is then sent to the PCP of the patient to help guide treatment.  A copy to your doctor might be a good idea as well.

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

[familymom800]

Thank you so much for your information.  This gives me some things to discuss with my doctor on my next visit. You have definately made me more informed.

[danie17075rm]

Thanks for the suggestion on the B.  I am finally getting my b12 tested.  My docs have also told me to be on antidepressants.  I have a thyroid problem, NOT a mental illness.  I am working on my master's degree in mental health, I KNOW how to tell the difference between the two.  At one bad point before my thyroid removal, I just started crying in the doctors office because they were not listening to me.  I told them I was not able to live my life.  They went crazy saying I had depression and asked if I was suicidal lol.  I MEANT, I was not able to live my life because I am SOOOO sick and they wouldn't help me.  I was so frustrated I just yelled that to him.  I was reading my records from this doctor and now he has anxiety listed in my chart.  I was having panic attacks from being hyperthyroid.  It's frustrating!!!  I hope you feel better soon.

[snigdha1109]

Hi,
your information is really good. For me the only problem is elevated TSH. Everything else (T4, T3, FT4, FT3, antibodies count, Vit D, B12) is fine . TSH is around 5. Though I have  hypothyroid symptoms couple of things confuse me whether i am really hypo or not, as my body temperatures are good (it goes upto 99.5 in the second half of my cycle), weight is under control, periods are very regular etc etc without thyroid medication. They had put me on levoxyl which messed up my life. Never felt good rather i had terrible side effects. Thing is I was diagnosed with this elevated TSH 8 yrs back. I have been suffering from then. I was on and off thyroid meds with a low dosage. Last year i took levoxyl and many times felt that death is at my door step. Anyway my point is am I really hypothyroid or what could have elevated my tsh? I had very very stressful life from past 12 yrs. so is the stress the cause to elevate tsh? if it is hypo why don't i feel any good with medication? started with yoga, giving me some relief. Please share your knowledge on this. really appreciate it.

[gimel]

I would be very interested in seeing your test results and their related reference ranges shown on the lab report.  Would you please post those?

TSH causes no symptoms.  It is just a pituitary hormone that is supposed to reflect the levels of the actual thyroid hormones.  In actuality it is affected by so many variables that it cannot be shown to correlate adequately with either Free T3 or Free T4, much less with symptoms, which are even more important to a patient.  If you want to get an idea of the variability of TSH in people without known thyroid problems, have a look at the graphical data in fig. 2 of this link.  Note the huge spread of results and ask how can the so called "normal" range for TSH mean anything much.  It is only a rough indicator.  

https://docs.google.com/viewer?a=v&q=cache:kDnC-i5mP6kJ:optics.merck.de/servlet/PB/show/1809250/Thyroid-Inter-3-2008.pdf+thyroid+international+3/2008&hl=en&gl=us&pid=bl&srcid=ADGEESjqsbKxCT_KDAL3bFlBB9lU7UmLQF9yFeAbfmFzX3fxJzEhlH2aw-1onMq1UZvDLI89xXcNwkV8io1Rj93xSUK-BPQBsxsLPK5Lr67vILaM9WB4sHN3z9tgPo8Nyenk-565rpkV&sig=AHIEtbQ-RMH6W-koUfLI2RE7TLcS4RVjGw

Symptoms should be all important, not just test results.  I do want to have a look at your test results, but my initial reaction is that if you are feeling find, with no apparent hypo symptoms, and test results are fine by you, why are they medicating you?

[snigdha1109]

Hi Gimel,
I really appreciate your response. These are the values.
FT4: 1.12  (lab range: 0.89 -1.76)
FT3:  3.24 (lab range: 2.3 to 4.2)
TGAB: <20 (lab range <40)
TPO: 20.3 (< 35)
TSH : 16:20 ( lab range: 0.34 to 4).

Another thing I just noticed. After using levoxyl 75 mcg for 6 weeks where i started to have hyper symptoms,

my TSH was 1.009 and FT4 was 1. 2 and now with TSH 16 my FT4 is 1.11 . So the difference of my hypo FT4 and Hyper/ healthy FT4 is .1. Very confusing for me.

the very funny thing is, I was not on medicines for almost 3 years and my TSH was around 5. We got to consider that i was diagnosed with out of range TSH around 8 yrs back. Again recently when I was on levoxyl 75 mcg, I went to hyper pretty soon and though i reduced my dosage to 50mcg i was having symptoms like test chest tightness, insomnia, heart palpitations and other symptoms. So I used to stop them for a while and see my TSH and it used to be within the same range around 5 whenever i stop the meds. My first doctor always insisted me on higher doses. As I was feeling fatigued, I thought probably she is right and again went back to 50 mg for around 5 months and started noticing that my situation is getting worse. Other than fatigue, I had lot of other symptoms like terrible depression, memory loss, hair loss, highly irritated, insomnia, unable to breath, joint pains, psychotic thoughts and highly messed up periods where i never ever had a problem with my period. Other than all these, i started getting heavy pains in the left side of my stomach, ribs, breast (also had breast burning) and brain where i used to feel i am in a no oxygen chamber or i am getting a stroke. I was losing vision in my left eye where things were blurry. So when i saw all this I got damn scared to use levoxyl. My original symptoms were fatigue, poor concentration, some weight gain, depression and insomnia. At times i felt I am awake all the time as I never had deep sleep. It was very unrefreshing sleep and this happened for many years as I worked as a software consultant in different shifts. Now after almost 5 months of stopping medicines, the left side pains are slowly vanishing one by one. I almost lost them. Still my period is messed up to an extent but a bit better now. There was some connection between my messed up period and all those left side pains. I used to have spotting in my period and that's when i was experiencing all these symptoms. I have been practicing yoga and from past few days there is an increase in my energy levels where i can exercise for a while and i notice some other changes. I want to continue with my yoga and see how it works.The results i posted here were taken on 04/30/2012. Huh, I guess I have written a big message. I am really sorry to bore you with all my stuff..I guess it's the frustration piled up..lol..any way thanks once again for your response.

[gimel]

So please clarify if this is correct.  You have been off thyroid meds since approx. the first of this year, and your lab tests from 4/22/12 represent your levels with no medication, correct?

Are you having any hypo or hyper symptoms now?

[snigdha1109]

sorry for the late reply. I did not get this message to my email box.

Yes, those results are without medication. I stopped medicines from Dec 2011.

The main symptoms I have are Fatigue, poor concentration, poor other mental functions, mood swings and breathing issues some times. I used to feel cold before but my vitamin D was very low that time. Now it is fine and I still  take 2000 IU per day as I don't go under sun much. i am fine with a room temperature between 65 to 75 F.

I started my yoga breathing (It is just breathing, no postures) from Dec 2011 (after stopping medicines) and I lost 9 lbs with out any exercise or physical activity as my fatigue levels were high. My weight stabilized at 134 lbs and I don't gain any weight despite eating 1500 calories. Usually i have a healthy diet. I am 5 lbs over weight according to my BMI. My cholesterol has never been elevated and it's a bit low may be as I am a vegan.

I hope I clarified everything. Thanks again for your response.

[gimel]

From you lab reports, your Free T4 is a bit on the low side, and your Free T3 is just at the middle of its range.  Many members report that symptom relief for them required that Free T3 was adjusted into the upper third of its range and Free F4 adjusted to around the middle of its range.  So with your symptoms, trial of a low dose of thyroid meds would be worthwhile.  I suggest that you discuss with your doctor a starting dose of 25 mcg.  Then you can increase very gradually, as necessary, dependent on how  you feel.  TSH should not be used to medicate a thyroid patient.  TSH is too variable and undependable.

You mentioned having been tested for Vitamin D and B12.  Please post those test results and their reference ranges shown on the lab report.   Also, if you have never been tested for ferritin and a full iron test panel, that would be a good idea.  

Even though both TPO ab and TG ab were below their limit now, I would suggest that you have those tested again sometime in the next 6 months to a year.  It could be that you are in the very early stages of Hashimoto's Thyroiditis, which is the most common cause of diagnosed hypothyroidism.  I say this because of the above antibodies tests, plus the TSH results.

[snigdha1109]

yes, I too observed it. The FT4 is a bit on lower range. But some how levoxyl does not help me as I tried the doses of 25, 37.5, 50 and 75 mcg. I tried Thyroxine too. How does Armour work?

Here are other results. I was quite irregular with vitamin D. So it went a bit low from 47 (earlier result)

Vitamin D: 29 (range: 33 -100)
B12: 698 (range: 211 - 911)
ferritin: 20 (range: 11 -  307).

WBC: 7.5 (range : 4.5 to 11.5)
RBC: 5.3 (range: 4.2 to 5.4)
hemoglobin: 12.5 (range: 12 - 16)

Last year's TPO (04/19/2011) :  26
Current TPO: 20.3 (range: < 35)

The breathing exercise I am doing is supposed to make my immune system stronger. So I don't know if that has reduced TPO count from last year's.

the only thing i am really curious is that my TSH became abnormal 8 years back and for more than 6 yrs I was either on 25 mcg dosage (according to doctors this is almost negligible)  or off medicines and my diet was also bad f but can the antibodies count be still within the limit? my TSH went high when i had more stress levels which was 4 years back.  Always only TSH.

[gimel]

Although your thyroid levels could be tweaked a bit to enhance their effect, from your test results with Vitamin D and ferritin make me think that you really need to address those before pursuing any further change in your thyroid levels.  Note below the symptoms of low Vitamin D, and also low ferritin.

"There are a lot of other health issues that have been associated with low Vitamin D levels, including: muscle weakness, obesity, fatigue, chronic pain, cognitive impairment in older adults, increased risk of bone fractures, diabetes, and many more. Correcting Vitamin D levels alone is probably not going to completely fix the above symptoms, but they sure might help."


"Signs of low iron include extreme fatigue, weakness, shortness of breath, dizziness, irritability and headache. Your may experience problems with maintaining body temperature, causing your hands and feet to feel cold. Pale skin, brittle nails, an inflamed or sore tongue and rapid heartbeat are other signs of low iron. Restless legs syndrome, a condition that causes an uncontrollable urge to move the legs, occurs in some people with low iron."


Also, "Low ferritin can cause negative reaction like palpitations, nervousness, and anxiety in someone starting thyroid hormone replacement.  Someone described it like being shot out of a cannon.  It is therefore imperative that ferritin not be at the bottom of the range before starting thyroid hormone medication."

So it appears that for now your best approach would be to supplement with  enough D3 to get your Vitamin D level well above the middle of its range and also get your doctor to run additional tests ( serum iron, iron binding capacity, and % saturation) to better understand your iron issues before addressing your low ferritin.  

[snigdha1109]

wow, that was great. I did not really pay much attention to ferritin though I realized that it is in the lower level. I thought I am within the range. Yes, I do feel dizzie and feel nervous. My mom suffers from anemia. I rather mentioned this to doctor that could I have those related issues. They just don't take it seriously. They say every symptom is because of hypothyroidism. But what you say is absolutely right. Probably I gained the extra pounds as my vitamin D was low. I guess I lost it once my vitamin D was around 50. I also get gum swelling, bleeding and tooth pain immediately if my vitamin D level goes below 30.  I realized this over a period. But the earlier lab range was 25 i guess. My husband had terrible headaches and doctor told it is all because of his smoking. Part of routine he checked his vit d levels which were very low. Once his levels were up, boom...all the head aches were gone.

I thought if the hemoglobin is fine, then iron levels must be fine. Did not know that it does not work that way. I do eat iron fortified cereal and see that i get required 100%. May be i don't absorb it well or i don't know.

It is so very difficult to convince these doctors. They make you feel as if you are a nut case. When I asked one of my endos about T3 conversion, he said it is BS.

Thanks so much for all the info and for your patient replies. I am taking care of vitamin D. I will see what I have to do with ferritin. I guess u have given me all possible information. I will get in touch with you with the updates after some time. take care.

[Brucergoldberg]

how does this person treat the low ferritin?  

[danie17075rm]

Yikes.  My ferritin is only 6 after my TT.  I am seeing a hematologist now, and might have to get iron infusions.  

[payton382]

Low Ferritin is treated with Iron supplements; depending on the lab results.  If you are in range but low you would just need Iron to raise Ferritin.  If you are under the range it depends on the Dr but sometimes requires infusions.  

Iron levels are not flagged low until the number is under around 10-15 usually.  However, most Hematologists and Dermatologists (for the hair loss) will say it needs to get up around 70 to stop hair loss and other symptoms.  A good target range is 70-100.  

Not all iron is created equally.  You want to look at the amount of "Elemental" iron in each tablet.  I take an amino-iron pill manufactured by Douglas Laboratories.  The difference in iron pills is normally just the mgs of Elemental Iron and the binder; sulfate, gluconate, amino's, etc.

Also, Iron is fat-soluble so your body does not rid the excess iron that your body does not absorb.  If I remember right we only absorb approximately 5-10% of each dose.  Iron can become toxic so most Dr's will pull labs around every 2-4 months to monitor levels.  Do not take without Dr supervision.  

Do not take Iron within 4 hours of your thyroid dose or calcium.  Anything acidic will help with absorption.  Most recommend Apple Cider Vinegar, Vitamin C, or to drink Orange Juice with it.  However, almost all Orange Juice has Calcium so watch the labels if you prefer to do it that way.  

Ferritin takes a very, very long time to raise.  Most people with low levels will not be able to raise them by eating iron rich foods only.  In most cases it does require supplementation for a year or two or sometimes longer.