I've been around MH, too for a while, mostly here on the thyroid forum... I'm confused as to what you might be seeing as a cancerous nodule. Are you talking about the dominant one, mid pole, left lobe? Are you thinking it's cancerous because it's dominant and they recommended biopsy?
Just to put your mind at ease... less than 5% of thyroid nodules are actually cancer and thyroid cancer is one of the easiest to cure, with removal of the thyroid, since thyroid cancer rarely metastasizes. Of course thyroid removal leaves you with hypothyroidism, but then I'd have to say "welcome to the club"... I've been there for 7 years without thyroid removal... lol (sorry, my little attempt at humor)
When you copied, you missed the impression, which is the most important part. From what I'm seeing, I'm thinking maybe inflammation/Hashimoto's, but I'd really like to see that impression.
Is TSH the only Thyroid blood test that's ever been done? You should also have been having Free T3 and Free T4 tests, along with thyroid antibodies. I have quite a few friends from the Hep C forum, but I'm not really familiar with what all you have to through to get a clean bill of health. You'll have to help us with that part, because the drugs could affect thyroid function.
Hyperechoic nodules without internal blood flow (it has peripheral blood flow only) is not tumor and likely benign.
It is hard to say about autoimmune thyroiditis due to the lack of blood test results (only TSH is given and it is normal)
some medication and medical conditions are causing thyroid enlargement by blocking the transfer of iodine form food to blood and from blood to thyroid.
If doctors will rule out side effects of drugs, peripheral thyroid hormone resistance, low T3 due to the liver problems and autoimmune thyroid disorders, the iodine transfer test may be administered.
Sorry to be confusing!
I started with the IMPRESSION... lol... knowing that it was so important.
Enlarged thyroid lobes bilaterally right greater than left increasing in size from the prior study.
Dominant nodule in the midpole of the left thyroid lobe. Consider follow-up ultrasound-guided thyroid biopsy of this nodule."
And Yes, that was what I was thinking that it must be the C since they want to do a biopsy!!! I was also somewhat aware that it is probably pretty rare.
Good news to learn that it is easily taken care of! but! Fingers crossed NOT! lol.
My GP did the request and we were just doing test in general since it had been a while (years and years) so I knew that it was not a full thyroid workup. but In the past my numbers were all in the normal range for all those other thyroid test you mentioned *after Hep C treatment ended* - that was many years ago around 2005!
Currently my medical list is: Vyvanse (for chronic fatigue), Omeprazole, Topiramate, Baclofen (both pain meds), Lorazepam (Ativan - anti-anxiety), Ambien.
Interferon (a form of chemo) is the main med for Hep C that I treated with. New patients are lucky as they are trying to do away with it as it is so damaging! Back when I treated the usual was, at the longest, 42 weeks but due to a lab error I was on treatment for 72 weeks! Ribavirin is the other main med. It is a booster med to the interferon. Again, I ended treatment around 2005 and cleared the Hep C. but things never got better and at the Uni of Pittsburgh Liver Center one of the top nurses actually apologized for destroying my life! It was not said lightly and best describes my ongoing daily life struggles! I am not the only one, unfortunately.
This is why I have a bit of a fear of doctors and want to be overly prepared - UGH.
Again, thanks for the reply,f
Very comforting to read your reply and all the mumbo jumbo defined!
I do wish I had more blood work but we were not thinking about thyroid when the doc ordered them... then I got the call that he wanted a scan.
During HepC treatment and more some time after I gained about 70 lbs while maintaining a very strict diet (I lived in Japan so understand portion control) and exercising daily! I never had a drivers license so I am a cyclist and runner and walker. BUT I was gaining weight as if I was living life like a couch potato! and at that time all my numbers were perfect! a real crazy medical mystery. For the first time, this year, in many years, I was actually losing weight without doing anything different. It is just a few pounds a month but everyone is really noticing and FINALLY! but again why?
I have read about blockage of iodine and was thinking it could be that. I only add/use sea salt to my food but am sure that I get enough iodine salt in my regular diet???
I will certainly bring your recommendations to my meeting with the endo.
You'll need to have the Free T3 and Free T4 tested, along with the TSH. FT3 and FT4 are the actual thyroid hormones and are much more telling than TSH alone, which is a pituitary hormone.
To be honest, I haven't researched all the drugs you've been on (interferon, etc,), but I know from family/friend who have had various forms of chemo that they can have an effect on healthy tissue, as well as invading cells.
The meds you are currently on, should not have an effect on your thyroid; in fact, I've been on the Omeprazole myself and am currently on Topiramate. We've had quite a few members on the others.
The good news is that often Chronic Fatigue, GERD (acid reflux), anxiety, and sleep disorders often go away when one has adequate thyroid hormones and some of the drugs can be dropped, or at least, reduced.
Do you take the Topiramate for seizures or for neuropathy or for some other condition? I'm not prying, just trying to figure out a full plan of attack. I take it for neuropathy caused from years of untreated Pernicious Anemia (vitamin B-12 deficiency). Topiramate has been studied, and shown to work, as a weight loss drug, so could be considered as a possible cause for your weight loss - just thought I'd throw that out there.
So -- you need to go ahead with the biopsy, as recommended. Even though thyroid cancer is rare, one must never take chances or ignore a possibility. The result will come back either negative, inconclusive or positive. Positive would result in recommendation for thyroid removal, which would then leave you hypothyroid, which is where some of us are - not necessarily from removal, but from destruction from Hashimoto's. Inconclusive could result in the same recommendation or it could result in a "wait and see" - if given the option, I'd go for removal just for peace of mind.
You need the Free T3 and Free T4 tests and thyroid antibody tests. Those are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb). Make sure you get them both, because they are both markers for Hashimoto's; some of us have only one or the other, some have both.
There are some vitamins/minerals that some hypothyroid people are often deficient in. I don't, typically, recommend them, across the board, but because of your history, symptoms and the meds you're on, I'm going to suggest that you get them
Those are: Vitamin B-12, which can cause the most horrendous fatigue you've ever imagined, plus if the deficiency is left untreated, it can cause tingling, numbness, burning in hands, feet and legs, ultimately causing permanent nerve damage, which is what I have and I wouldn't wish on my worst enemy.
Vitamin D is necessary for the proper synthesis of thyroid hormones.
Ferritin is an iron storage hormone and is also necessary for the synthesis of thyroid hormones. Low ferritin levels indicate low iron stores. High ferritin levels indicate high iron levels or high inflammation levels.
In a nuts shell: Ultrasound, FT3, FT4, TPOab, TgAb, Vitamin B-12, Vitamin D, Ferritin.
"An ultrasound guided thyroid biopsy is a painless, minimally invasive method that uses a much smaller incision and does not require general anesthesia."
That may be so for a lot of people. My mother tells me her thyroid biopsy was "grit you teeth is it over yet" pain. She was pale and had to lay down as she didn't feel well after the first 10 attempts. Her nodule was solid so they did 20 attempts! to obtain enough cells.
My mother was also on Nexium, which is stronger than Prilosec (Omeprazole), but this was the wrong treatment as her GERD and LPR as both conditions were due to low stomach acid. She was told she had too much stomach acid and a simple home baking soda test showed how wrong that diagnosis was! Hypothyroidism is one of the many causes of low stomach acid just to add.
Today she takes betaine HCL with pepsin supplements to increase stomach acid and digestive enzyme supplements to help with digestion (low stomach acid means you are most likely to also have low digestive enzymes).
A normal thyroid gland is homogeneous (smooth and uniform texture). A heterogeneous thyroid gland is not uniform in structure or composition. Recommended to test for thyroid antibodies.
"Hepatitis C infection is a well-recognized precipitator of autoimmune thyroid disease when treated with interferon therapy." - Hindawi - Autoimmune Thyroid Disorders.''
Will be short for now... more later...
Topiramate - I guess the docs prescribed it for a number of reasons. The main was due to sever pain after surgery. I had deep nerve damage after the surgery... I also had migraine, and the issue with weight (after all my thyroid numbers as well as testosterone etc were normal) so the Pain Doc went with Topiramate and it has worked great with me.
I will probably ask about those supplements. I was on a supplements with a very great doctor run vitamin shop. He really knew his stuff and even gave me some bottles for free just to help out and test stuff. I never felt better and decided that my system, maybe, just couldn't process all the stuff. I was also always eating very healthy, got lost of sun, etc. I stopped all the supplements and OMG!!! I felt sooooo amazing! As it is well known the liver must process everything. But I will see what the endo thinks as well as my GP. Thanks for the advice.
OK, got all those labs written down as well.
Again, thanks for the info, Red_Star.
I was told by my great friend/nurse to always ask a biopsy doc (after they tell you it is totally painless) how many they have gone through themselves?!?!
Sorry to hear about your mothers experience!
I most def have too much stomach acid! UGH! HepC treatment burned a hole thru my stomach lining and I will be on some sort of acid reflux forever! If I mix a dose I will have stomach acid coming up which is very horrific. But thanks for checking!
Again, thanks for clearing up some of those definitions and what the labs mean. Really great info. f
No problem. :) So you had a stomach acid pH test to know your pH was too acidic? Proteases (enzymes that digest protein) heal the stomach lining. I didn't know this when I had my mother take these supplements but found out sometime later what ingredient got rid of my mother's severe gastritis pain she had suffered with for almost 6 years.
Just to add, ulcers can eat a hole in the stomach lining too and you can repair an ulcer so you may also be able to repair damage done from chemo? Can't hurt to try.
A good article from Digestive Disorders and Enzymes and this sentence gave me the answer to the magic ingredient that was healing the damage - proteases!
"However, there are lots of clinical studies which clearly show that taking proteases significantly speeds up healing of ulcers, gastritis, and wounded tissue."
At the risk of sounding like we're ganging up, I have to agree with Red_Star about the stomach acid. I was on Aciphex, which is one of the strongest prescription acid reducers on the market, for quite a few years, and sometimes, it wouldn't touch my acid reflux. I'd often wake up in the night, literally, choking, trying to catch my breach, from the acid.
My ENT ordered tests to see how much damage was done to my esophagus over the years from the acid... fortunately, no holes, but damage, nevertheless. About the time, I started on thyroid medication, my insurance company decided they would no longer pay for my Aciphex and the standard dosage of omeprazole didn't touch it, so he doubled it. Also, about that time, a member of this forum, now no longer active, mentioned that she drank dill pickle juice to calm her acid reflux; though I thought she was crazy, I tried it and it worked. So does olive juice, peppermint oil and peppermint tea. But thyroid medication helped it more than anything; I very rarely have it anymore and I, too, thought I'd be on an acid blocker for the rest of my life.
I strongly recommend that you get the vitamin/minerals that I mentioned, tested, prior to starting supplements in order to determine adequate dosages. In the case of vitamin B-12 levels need to be quite high in the range to be adequate.
Would you mind telling me what dosage of topiramate you're taking? It's not doing a whole lot to control my neuropathy pain, but from what I've ready, I'm on a really small dose, so I'm wondering if that's the issue.
"but from what I've ready" - sorry, that should be "from what I've read".
Thanks for more clear explanation. That is why I love MedHelp so much! I will certainly request a stomach acid pH test.
Unfortunately I am really exhausted and have a lot to do before sleeping and want to go over your post and Barbs... so more later.
Barb, as above, will re-read your post but to answer about my dose of topiramate I am on 200mg 2x a day. Oh, I forgot... other than the surgery across the chest pain I also had a frozen shoulder that still gives me pain - so the 200mg x 2 is very successful for me. I was on 100mg x 3/day but was upped a number of years ago and it is still effective.
OK, off to the laundry to dryer... therapist tomorrow. night all.
Just tried the baking soda test. The first morn gave an indication of "adequate" stomach acid. With exactly one burp at exactly the 2 min mark. The next morn I did not burp at all.
TBH, I am reminded that I am here for my thyroid issue. I can look into stomach acid pH later. Another problem interferon leaves many with is brain fog. I have so many problems with daily life and memory, my current medical issues and now the thyroid and all this new stuff you all have been so great to provide. I just can't add another thing that I am fortunate to have omeprazole take care of wonderfully. *reading thru many of the complaints on the test site don't fit any of mine so... Again, once the thyroid issue is taken care of, and maybe, as with Barb, the stomach acid will resolve itself if any thyroid meds are necessary.
btw, this all may very be helpful to my mother. She is always complaining about her stomach and nothing they give her seems to help.
p.s. July 2nd is going to be one hell of a very long day! Just realized that it is the first day of the fitting of my partials. Interferon also helped me to lose about ¼ of my teeth... I start with the Endo at 8:15 and have to wait for the Dental at 2pm. Fortunately the hospital cafeteria is just next door to both.
Unfortunately, thyroid issues and B-12 deficiency also leave us with brain fog, so we never know which is the contributing factor. LOL
Yes, please do pass along any information you think might be helpful to your mother.
Good luck on July 2 and please get a copy of your lab results and let us know what they are. We often disagree with doctors - because they tend to adhere to standards that often leave patients undiagnosed and ill.
Yeppers, I try to always get labs before my next doc meeting so I can post and get input then the doc always says "You're a genius"! but I usually admit that it isn't me but my colleague who know much more than me!
I learned my lesson about HepC treatment. I don't think I would have treated if I had MedHelp to chew it over with... so I will be getting a second opinion on everything/anything.
Yes, I totally agree with you about Endos. They look it up in the books instead of looking up at the patient! UGH!
Will do with mom, that is another thing that is keeping me stressed. Both Ma&Pa have been in a nursing home (the same room) and getting the best care would mean that I should be up there 24/7 but it is impossible to get there even monthly so...
Not to repeat myself... but all my numbers were 100% normal. Thyroid, Bs,D, etc - and still had this horrific brain fog. Since it has been so long to test will get all done again, of course... I don't agree with the HepC community but I am usually held up as the PIS Poster Boy - UGH! I know there are others with much worse who can't even be on the forum any more due to inability to type or worse…
Anyways, how does your topiramate dosage compare to mine? What do you think you should be on?
Oh, sorry to hear about Ma & Pa in the nursing home; they tend to put too many things down to "old age" and let them go without treatment, which of course, to me is unfathomable, unless they have a terminal illness.
The problem I have with "100% normal" levels of thyroid, B, or D is that even though results may fall within the normal range, they still aren't adequate, if in the low end of the ranges. For instance, for years my vitamin B-12 levels were in the low 200's with a range of 200-1100 and my doctors kept saying they were fine, in spite of the fact that there's a note right on the lab sheet that says anything under 500 can present symptoms, all of which I had, but they kept telling me I was fine because I was in range ... Of course, I didn't know all this back then, and I carry their bad judgement with me every day of my life... Thyroid, vitamin D and ferritin ranges are the same way... the entire bottom halves could be cut off.
As for my topiramate -- my doctor only prescribed me 25 mg X 2/day. I'd been on gabapentin for a little over a year at 100 mg X 9 and while it wasn't getting rid of the pain, it was tolerable and my neuro had chosen to keep me at that dosage. It was my pcp who decided to take me off the gaba since weight gain is a known side effect of gaba. I've been struggling with my weight since becoming hypo in 2007, then put on an additional almost 10 lbs when I started the gaba. Unfortunately, my pcp does have a tendency to hold back when it comes to prescribing therapeutic dosages. I'm thinking, at least 100 mg/day of topiramate, would get better control of the neuropathy.
Even at the small dose I'm on, it does affect my appetite, and I have dropped some weight, but I'm not sure if I can credit it all to the topiramate. I'd guess that some credit has to go to getting off the gaba and also some has to go to the fact that I increased my own thyroid med dosage, by 75 mcg/week.
Had my appt with Dr. Karslioglu (try saying that even once!) and it went kind of like it has gone with any other endo.
I came in with lots of info, questions PLUS a huge questionnaire to fill out from them. They also had near decade old scans and other data.
I am pretty sure DrK had made her mind up before I even walked in. Biopsy. Which was the final Impression/Consideration... So why even go to the Endo?
She explained that because it was of over a certain size that a biopsy is standard. I asked about more blood work but she said at this time only the TSH was necessary?!?
The best thing is that I will be able to go to the University of Pittsburgh instead of the little hospital in town...
We went over the options, as discussed in this thread... She said 90% were not cancerous but I suggested it was more like 95%... I also told her that I only used sea salt but that my intake of regular food probably had included enough iodine for which she said I was well informed and she was going to go over that.
She asked me why my doc had done a thyroid scan and I tried to explain a bit of my medical history and how messed up it was but she just wanted me to get to that day he ordered the tests!
Oh, I asked her if I could record our conversation/her jargon (first her English had a decent accent and I am not that familiar with the lingo)... SHE REFUSED!!! I was really surprised.
I am glad that they are handing out "Visit Summary"... as it says "BMI: Discussed lifestyle modifications" - then lists the code. NO such discussion was had!
Also, this was all taken from very old medical records and I had crossed out some mistakes but they did not correct them. I does look like I can go online and correct it all myself!
Well, I did expect that the biopsy was going to be done but also wanted to get some of the blood work done as well. Will have to get my GP to order them...
I rescheduled the biopsy myself to Aug 12th which will give me enough time to talk to my GP and get the other blood work... Unfortunately, there are not many endos to choose from in this town - and I don't think I will have much of a different outcome anyways.
Sooooooo, what do ya all think?
thanks in advance,f
It's late in my world and I've had a loong hard day, but looks to me like you struck out... something like wasted your time.. I'm getting ready to go to bed and I'll look over this again in the morning, but it really looks to me like you got the "brush off".. Don't put too much faith in University of Pittsburgh, either; we often find that the bigger, fancier, the facility, the more outdated they are..
I don't think it will really matter with this endo tbh. I believe it is getting very difficult to find honest docs who believe in doing their job and not just collecting a pay check.
I have a great GP. I can get the report of the biopsy at the same time this endo will. In the off chance it is cancer then there are few choices and this endo really won't be doing the surgery if that is what I decide.
The only reason I mentioned the University of Pittsburgh is that I will have the biopsy done there instead of the biopsy done at the local hospital in my rural town. btw UPMC (The University of Pittsburgh Medical Center) is one of the worlds major teaching universities. Even the local hospital I would go to would be part of the UPMC world... plus I can have a friend at Pittsburgh come visit me! *Not that you & others couldn't be correct about the University of Pittsburgh too... who ever does the biopsy better get enough material - that is all I care about!
Now I have to get some rest too. Hope you are well. f
Don't forget -- the teaching hospitals are the ones who are sending the endos and other doctors out into the world to keep practicing the same old stuff that we patients, already know doesn't work.... good luck!!
I totally agree Barb. It isn't just the teaching hospitals but anywhere a doc comes out. If a doc wants to be a paper pusher that is what they will be.
IMHO it takes so much compassion and energy by a medical professional to work against the system to CARE for their patients...
... if we all had great docs we wouldn't be driven to sights like MedHelp...
I have been having a hell of a fight getting LDN (low dose naltrexone) prescribed. My GP wants to test to see if it helps me but can't write a script. My pain doc can and at first was all in then changed her mind after going back and forth for 6 months! WTF! I could have easily ordered it from another doc out of state while waiting for this pain doc... but - anyway... end of rant. Yes. I understand and don't trust docs and have fired a few...
Thanks for the good luck wishes. f.
"... if we all had great docs we wouldn't be driven to sights like MedHelp..."
Truer words were never spoken!!