I am a 34 yr old male. I had a thyroid lobectomy just under 5 months ago. It was performed because I had a hot nodule and was hyperthyroid. During the hyperthyroid phase I was getting all the usual symptoms, anxiety, palpitations, tremors, extreme muscle weakness and also strange parasthesias in my arms and legs that moved around.
After the thryoid surgery my thyroid levels were being tested. I had tested positive for Graves antibodies and Anti thyroglobin antibodies before my surgery. My biopsy report showed a 3cm nodule and the report said chronic thyroiditis.
My TSH 6 weeks after surgery was 2.6. Free T4 was .9 with a range of .7 -1.2. I was getting dry skin, hair falling out, tired, and extreme muscle aches and pains. My Dr wanted to wait to see if the other half of my thyroid picked up. 10 weeks after surgery my TSH tested at 2.0.
I am to be retested next week. The problem is I am still suffering from muscle aches and tightness. Mostly in my legs, back, and arms. My jaw aches (probably from stress of this whole thing). I went to a Neuro and had a complete workup including spinal and brain MRI. Neurologist said that nothing showed anything indicative of neurological illness.
My question is..is it possible for me to be feeling this way with a TSH in the ranges I stated above? I also had a cold and sinus infection. The sinus infection was treated with Antibiotics but my ear fullness has continued. Some days are better than others with my ears but they feel like they have fluid in them.
I have also been suffering from panic attacks that strike at random. I have never really had anxiety disorder but I am sure that the stress of all of this hasn't helped. My fatigue is not that bad but my appetite and bowel movements are very irregular
The one thing about my symptoms is they seem to worsen in the afternoon. Almost like clockwork. Right around 12 until around 6pm is when I feel my worst. Advil can help a bit but I really have not felt the same since my thyroid blew up. My endo thinks that since the biopsy showed chronic thyroiditis that I have Hashimotos even though my TPO antibodies have not tested positive.
Has anyone experienced this type of thing after a thyroid lobectomy? The neurologist I saw said it can sometimes take year to shake off all of the symptoms after thyroid levels normalize.
If my TSH and FreeT4 are within range could it be that my thyroid is not the problem? I do remember when I was going through my hyper phase that at one point I tested a TSH of .4 and I felt FINE. Would it make sense that perhaps I need my TSH in the absolute hyper end of the normal range to feel good?
on other thing. I have always had high blood pressure. usually 140/90's. I am not overweight and have always been in pretty good shape. in addition to the muscle and joint pain I tend to get leg cramps. this doesn't happen often but i NEVER had them EVER in my life even when I was working out 7 days a week for 2 hours per day.
the past 4 to 5 weeks my BP has now gone up to 150's/100's. sometimes its even as high as 160'2/110's. could this also be related to thyroid levels? I have read where high BP can be associated with thyroid disorders.
also could it be possible that I am having adrenal function problems now since my thyroid levels have been crazy?
Even though your FT4 is in range, it's very low. You need to have a Free T3 (FT3) test done, as well. FT4 can not be used directly, it must be converted to T3; this is mostly done in the liver, but also in other organs. Some of the T3 (and T4) in your body is bound by proteins, and is unusable, which is why we tell you to test for the Free's, as this is what's actually available for use. Most of us find that FT3 levels correlate best with symptoms.
You said: "I had tested positive for Graves antibodies and Anti thyroglobin antibodies before my surgery."
What was the result of the TGab (Thyroglobulin antibodies)? Just because you tested negative for TPOab, doesn't mean you don't have Hashimoto's. Both TPOab and TGab are indicators of Hashimoto's. Some people have TPOab, some have TGab, still others have both. Since you tested positive for TGab, that would indicate Hashi's. Which tests were done to diagnose Graves?
I went to my Dr in the midst of what I think was a hyperthyroid period. My neck was swollen and my symptoms were off the charts. I had the goiter for a year and had it biopsied twice. It kept growing and every time it would swell up I would get symptoms. My Dr I think tested my TSI because I asked him to test me for graves. Not sure what the level was but it came back positive. He then tested me for TGAB and it was positive. I don't think the numbers were sky high but they were positve for the antibodies. The endo that guided me through the surgery figured I had a 20% chance of needing meds after the surgery and never really said I had Hashi or Graves. I went to a new endo because the one I was seeing dismissed my post surgery symptoms due to the tsh being 2.6. New endo took one look at the biopsy report from the lobectomy and it read "Chronic Thyroiditis". He said that means Hashimoto's. He did say you dont need to test positive for all the antibodies or even any at all. He has seen patients with Hashi who never test positive but if they have thyroid surgery the biopsy finds it. The other side of my thyroid has 2 extremely small nodules in it.
I go back to him this week. The logical part of me says I never had a problem until my thyroid blew up on me. I mean NO health problems. The muscle aches and sinus/ear pressure, anxiety, and high bp just seems all to much of a coincidence. But then again I look on these boards and see people whose TSH is WAAAY off the charts and think how could I feel this off with what seems to be a minor move in thryoid levels.
I also got diagnosed with carpal tunnel 3 weeks ago when my neuro did a nerve test on me. Never had that problem before either.
I appreciate your response. These boards have helped me immensely understand what I may be dealing with.
If you tested positive for both TSI and TGab, in my opinion, you should be diagnosed with both Graves and Hashimoto's. Both of these diseases, attack and eventually, destroy your thyroid. It's not unusual to swing back and forth between hypo and hyper, with either of them.
It's very possible that your symptoms are caused from being hypo. The new level for TSH is 0.3-3.0 and you aren't very far from the top; in addition, since your FT4 is very low in its range, that would indicate that your thyroid is not producing like it should.
You really do need to get a Free T3 test to see where you're at there; but it sounds like you might well benefit from a low dose of replacement hormones.
That said -- that afternoon crash could very well be an adrenal issue. It's advised to get adrenal issues taken care of before treating thyroid issues. Ask your doctor to test you.
Barb, what tests are necessary to diagnose an adrenal problem ? Is only a 24 hour cortisol test accurate? A saliva test, which health plans don't cover ? My doctor sent me for a one time blood test, which came back at 20 with a top range of 19. I was fasting and the test was taken at 7:30 am. I was told that being slightly out of range didn't matter. Then another doctor took blood in the afternoon and cortisol came back at 7.5 with a range of 2.3-11.9 and not fasting. Yet another endo has requested another cortisol test but gave no instructions as to fasting, time, etc. So confused, and can't seem to stabilize on meds. i also have a multi-nodular thyroid, but the overall size and nodules have shrunk since I was put on meds. , even though every endo says I shouldn't be on them at all because my TSH is always low, .08 on last lab. It was 1.2 before I was medicated, yet I had every hypo symptom, and still have many. Thanks.
grgmals, my normally low blood pressure...around 116/120 over 70/72...shot up to 196/98 before I was medicated and my normally low cholesterol went through the roof too. Both have gone back to normal with medication. I get muscle pain and cramps and foot spasms when my medication is lowered. I pass out on the couch in the evening lately almost as soon as I sit down, without feeling like I'm going to sleep. It's a shock to wake up at 3 am on the couch. Is that what happens to you ? I wish you good health.
i was getting severe fatigue but its not that bad anymore. I think I will myself through the day. The afternoon issues are really a worsening of my muscle aches and just an overall foggy feeling. The panic attacks are also completely random and mostly occur in the afternoon as well. My shoulders and thighs seem to be most affected. My hair has been falling out and my hands are really dry and they have calluses on them. I used to get calluses from working out but I havent been to the gym in a while and there is no other reason why I would have them. I also have to use eye drops for dry eyes which I have never had to do. Sometimes my vision will get a bit blurry, nothing major but just seems a bit off. The drops help with that.
When the shoulders get tight so does my neck and my arms feel like the nerves are pinched.
Over the past 4 weeks my BP has gone from what normally was 140/90 to a diastolic of sometimes over 120. I have always had high bp untreated but now its way high so my GP put me on medication which I am going to be starting this weekend.
I am surprised that your endo put you on thyroid meds with your levels within range. I would consider yourself lucky. The endo I worked with through the surgery really was dismissive of the hypo symptoms as being thyroid related. My new endo has been very good in terms of acknowledging that regardless of the range you can still have symptoms. He also said that with the chronic thyroiditis it makes me much more likely to need replacement hormone at some point.
The first endo made me really worry that something else was going on. That is why I went to the neurologist. The neuro did a complete workup including the MRI's. Nothing was found except a couple of tiny nonspecific changes that he had an MS specialist look at and they both said that it is not MS. The changes are in my small vessels most likely due to my untreated high BP for the past 15 years. They both said that thyroid disease can cause a ton or muscle and nerve issues and there was nothing in their exams that would make them think otherwise.
Reason for no treatment for my bp was always that I was in great shape. Worked out 6 days a week and my dr assumed the high bp he would get was because the only time I saw him was when I was sick (which was almost never). The neuro said I need to get it under control because of this.
I said to all the dr's I have seen that I am not a hypochondriac and I never go to drs. I also said that everything happened when my thyroid blew up. So either it is a massive unfortunate coincidence that I had two things go wrong at once or this is all related. But like I said, I also feel a little strange that I would have this many symptoms and feel so poorly with numbers that are not out of range.
one other thing is appetite. or should i say lack there of. some days ill eat and other days I will have to remind myself to eat at all. i used to eat breakfast lunch and dinner like clockwork. I needed to eat or I would feel terrible. Now I sometimes have to force myself to eat because I have zero appetite.
I'm not an expert, by any means, on adrenal issues, but I do know that cortisol levels vary throughout the day, usually highest in the morning, and going lower at night. I've read, both here, from other patients, and on other websites that the 24 hr saliva test is the most accurate; and you're right -- it's not covered by most insurance. I also know that many doctors do not recognize this test.
There are others on this forum who are much more informed on adrenal issues - I'll try to contact some of them for comment.
For both artfemme and grgmals --- thyroid issues can wreak havoc with blood pressure levels, and I believe adrenal issues can too.........
Grgmals, a lot of the symptoms you describe are associated with thyroid disorder. I've done an awful lot of research, reading medical journals and clinical trials, because I'm constantly battling w/ the doctors and feel I need to be able to hold my own and cite science, not opinion. Some of them have suggested hypochondriac or psychological sources for my distress, but it just ain't so ! At least, not according to the shrinks I went to or to my PCP, who all saw me blow up like a balloon and then deflate, and then balloon again and my hair grow in and fall out again. They are so angry on my behalf. I forced my PCP to give me T3 when the Synthroid did absolutely nothing. I told her if I was right, all my wonky labs and blood pressure would start to go back to normal, and I was right.
Some of the things you've mentioned are commonly associated w/ hypothyroid, and I have or had most of them:
dry eyes, carpal tunnel, fibromyalgia-like symptoms of aches and pains and spasms, brain fog, visual distortion, very dry skin, calluses around the fingernails, high blood pressure, high cholesterol, hair loss, depression. There are others as well. When the endos say things like "well, those symptoms could be from other things, and you are getting older", I say "Really, like what could they be from, for instance?" and they never have an answer. And really, what are the odds that somebody might have a whole slew of symptoms that all relate to thyroid, and instead have them be caused by several different ailments they never had before....AND have nodules growing on the thyroid. Sheesh. I get so frustrated.
I'll be interested to know what those knowledgeable about adrenals have to say. Did you know that if you have adrenal fatigue that it skews your blood test results ? Yes, and the meds won't work properly until the adrenals come back on line.
thanks artfemme. sounds like you have had a rough road of it and I hope you are feeling better. your statement is so true though. my first endo who was highly respected blew off my fatigue and dry skin and aches after my surgery. i said flat out..i just had half my thyroid removed and have lost all hyper symptoms and im now having symptoms that all scream hypo. he didnt really have an answer. my new endo seems much more in tune with symptoms. he was even surprised they never told me i had Hashi's based on the biopsy. his statement to me was "all your symptoms are hypo so lets see what the blood work says". it came back at tsh 2.0 and freet4 of .9. he said lets wait and see if the other half continues to pick up the slack, if you continue to hang around the higher end of normal we can try medication.
one other thing i have found through research and the new endo confirmed it was if you have hashimoto's you are 5 times more likely to eventually need thyroid replacement than if the nodule removed was just a plain old nodule.
amazing what you can learn by doing some research and advocating for yourself.
one other interesting point. when i was hyper I went to my GP in full fledged hyper symptoms, he took blood work, showed the graves antibodies but my tsh was "in range".
if it werent for the golfball in my neck and the fact that I had had a biopsy on my thyroid before did I connect the dots. I am sure it would have taken a lot longer to figure out the problem if my thyroid wasnt twice its normal size.
Hello! Your health situation is very similar to mine!!
I had a thyroid lobectomy 4 1/2 years ago for growing benign noducles. Surgery and recovery was a breeze.... but within 3 months post op I started having "BAD" health issues, even though I have never had any problems what so ever prior to this ( I was 46). They included heart racing , sudden anxiety, chest pain,extreme fatigue, sudden weight gain of 25 lb in 4 month post surgery. hair loss,extreme muscle pain,ect....
Endo # 1,2, 3 said TSH was in normal range... no meds necessary. I had neurological workup, cardiac workup (found PSVT),GI workup... found only H pylori and was treated in which I lost 40 lbs.. could not eat, on and on..... my life was a nightmare!! I was told it nerves, menopause ,put on antidepressants (which did not help).
So I searched and found with my Dr's blessing non tradtional medicine practioner and a 4th endo who checked Free T3, T4 which were borderlline low. She put me on low dose of synthroid, when my remaining thyroid lobe ultrasound showed inflammation even though antibodies/graves were normal.
All this combined with a restricted diet and accupuncture has helped IMMENSELY!!! I feel human again. It is a long,slow road, but I know I am on the road to recovery now and my last labs and thryoid ultrasound proved it.
I pray you all find a road to recovery too. It is wonderful to feel good again- I am working on being GREAT!!
Good luck and god bless.
You said: "one other thing i have found through research and the new endo confirmed it was if you have hashimoto's you are 5 times more likely to eventually need thyroid replacement than if the nodule removed was just a plain old nodule."
Hashimoto's is an autoimmune disease in which antibodies destroy the thyroid. As the destruction progresses, the thyroid produces less and less hormones; this is what makes us hypo. Most of us end up needing complete thyroid replacement hormones in order to survive.
yup thats what he told me too. the thing was the endo who worked with me through surgery never told me that. he said i would have 20% chance of needing replacement because most people who have a lobectomy have the other half pick up the slack just fine.
my new endo said throw that out the window because chronic thyroiditis on a biopsy is hashimoto's and it almost never affects just one side.
its amazing what one little gland can do to when it malfunctions
TSH 1.4 Range .3-4.5
Free T4 - .8 Range .6 - 1.2
Anti TG - Positive - 11.2 abnormal
Creatine Kinase - 133 Range 30 to 194
C Reactive Protein - Normal
Potassium Plasma - 4.1 Range 3.4 - 5.2
Vitamin B-12 - 821 Range 200 - 1200
Dr says that the Anti TG indicates Hashimotos. with labs in range wants to recheck in 6 months.
A lot of the symptoms have subsided EXCEPT for the muscle aches and lack of exercise tolerance. Those along with ear fullness and hoarse voice are still here.
I am going to call the Dr and ask him if he would be willing to try a low dose therapy with me but I am not certain that with these labs that this could even be the issue. Anyone out there have similar numbers and still having muscle and joint aches?
I also have 2 very small nodules on the remaining half of my thyroid.
Has he tested you for FREE T3 ? As Barb has told you TWICE and as gimel always tells people, FREE T3 is the test that, when low, seems to coordinate best with persistent hypo symptoms. Most seem to feel best when FREE T3 is near the top of the range and FREE T4 near in the top 2/3 of the range. Your FREE T4 could probably be a little lower without causing a problem, and many feel best when TSH is around 1 or even lower. You really need the FREE T3 test to assess your labs properly. If you go to have more blood drawn, be sure NOT to take T3 before the test, as it will give you a false high level. It is ok to take T4 before the test. My muscle aches didn't subside until I was on T3 and my labs were in the high part of the normal range. As soon as they reduced the dose of T3 (because the labs for T3 were falsely high, see above) the muscle aches as well as spastic cramps in my feet came right back.
Has he tested you for FREE T3 ? As Barb has told you and as gimel always tells people, FREE T3 is the test that, when low, seems to coordinate best with persistent hypo symptoms. Most seem to feel best when FREE T3 is near the top of the range and FREE T4 near in the top 2/3 of the range. Your FREE T4 could probably be a little higher without causing a problem, and many feel best when TSH is around 1 or even lower. You really need the FREE T3 test to assess your labs properly. If you go to have more blood drawn, be sure NOT to take T3 before the test, as it will give you a false high level. It is ok to take T4 before the test. My muscle aches didn't subside until I was on T3 and my labs were in the high part of the normal range. As soon as they reduced the dose of T3 (because the labs for T3 were falsely high, see above) the muscle aches as well as spastic cramps in my feet came right back.
Also, the newest norms for TSH have been changed to .3 - 3.00 by whatever medical society has say about such things. This seems to better reflect patient symptoms as well.
thanks. I am going to call and speak with him Monday and see if he is willing to give me a low dose trial. its surprising that with positive antibodies and two small nodules that they wouldnt want to put me on a low dose anyway. hopefully he will agree with me,
Too many doctors believe that if thyroid hormone levels are anywhere within their range, you should be well. As many of us know, this is not the case.
I would guess that your doctor is not concerned about the nodules, since most don't cause issues; however, considering that you have positive TGab, I'd say you have Hashimoto's, which definitely qualifies you for a low dose. Since your FT4 is so low and you have symptoms, I do hope your doctor will let you start on med. Good luck
thanks barb. funny that when my thyroid blew up i started reading these boards and saw so many people with the issue of "symptoms but normal labs" and I thought for sure that wouldnt happen to me.
the nodules on the other lobe are tiny I think under 8mm
I guess it is. this dr seems to be reasonable so my question is going to be "if you won't try a low dose with me then what other tests do I need to go have done to convince you that this is probably the problem".
the other one will be...if my thyroid is still normalizing are muscle aches and weakness the last symptoms to go away
hashimoto's was confirmed for me with the biopsy of the lobe they removed. i had also tested positive for graves antibodies before surgery as well.
thanks for all your feedback. its much appreciated.
One thing you have in your favor, right now, is that this doctor seems to be willing to work with you; so many of our doctors "cop an attitude" as soon as they realize that their patients are reading and researching, because we no longer believe them when they tell us how smart they are. I had one who got down right rude with me, and we recently had a member whose doctor almost ridiculed her because he "is an academic scholar and she's not"........
We know that with Hashimoto's, things get worse as the thyroid "dies", so if you can catch it at the beginning, it seems you'd be much more able to sidestep a lot of what many of us have gone through.
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