Hypothroidism

Good write up. Just wondering if you have had your TPO abs tested recently? Curious to see if they have dropped down to "normal" levels. Not replenshing T4 T3.has its downsides.

Being young has nothing to do with being stupid You did the best you could at that moment Thought you might want to know My daughter had her thyroid surgery at UCLA and she ended up with some damage including part of her neck Dr thought he was pullng on a lymph node but it was her neck Plus some vocal damage She had no choice with the surgery Thyroid was nothing but cancer got all into her lymph nodes and traveled to her chest 

I am so sorry to hear that alley! What type of thyroid cancer was it? I had papillary carcinoma. They said it had taken an aggressive form so it covered my thyroid plus had some tumors and it also spread to a lymphnode. And I didn't mean any offense about saying young and stupid but the surgeon I picked I only picked him because he was in my home town. I was not educated enough about finding an experienced surgeon or asking any questions and it could have made a difference or maybe it wouldn't but I think the risk is still less. The surgeon I had did not remove any of my parathyroid from the biopsy they had said they were still there but all the endos think he cut off the blood supply so my parathyroid died. Then when I was having severe tetany and n the hospital the next day I just had a nurse tell me to calm down I was making it worse and they did no treatment at all. My mom was trying to unravel my hands and massage them out. I know that has changed for the most part now that they will have calcium on standby. It is very sad to me when children or anyone for that matter has to go through something like this. I hope your daughter is doing alright.

My daughter Breanna had pretty much the exact same thing For about 5 or 6 yr he had this lump on the side of her neck She just thought it was a swollen lymph node no biggie I knew something was wrong But she didn't believe in *Depression* Yet she laid on her bed for 5 years She would not listen to me or her sister Ashley who at the time was a medical student It drove us bonkers (Ashley became a Medical Examiner) Then it got huge Then she was scared Showed her me and her sister Ashley said Doctor Tomorrow I'm dragging you GP new right away and sent her to an endo and he got the diagnosis which sent her to oncologist He wanted surgery ASAP and sent her to UCLA We were not sure why I mean its only an hour and half away But why not local ????? Never knew why She had her first radiation 6 weeks late the because the PET scan showed not much was helped they did it 2 months later and hen gain a few weeks ago Shes not doing very well she does not like to talk to much about it But her left cheek is swollen She looks paler the usual and she just feels yucky So thats where we are Thank you so much for responding It means the world to me I don' have really anyone to talk to about it I worry I don't know whats normal and whats not I hope to keep in touch Cause I think she might have to have another surgery to get more nodes It's nice to have someone that understands

Dr. Gofnung at UCLA is fabulous! But its tough to get an appointment with him. He’s anazing at getting the mefication dose right! He’s also amazing for biopsies. I didn't have surgery, but I feel he is extremely good based on the way he did my needle biopsy.

Boy, it seems so insane what you, Alley (with your daughter) and Melissa have been through!

I’ve been doing acupuncture, herbs and anything else I can. For a while the cysts were growing very rapidly  and I felt like they were at least precancerous. The right side had a very large cyst that basically canibalized almost all of the right lobe.

The synthetic meds made it worse and only caused more problems. 

I don't think I would have been able to survive the harsh treatments you've mentioned. I’ve  been so tired and weak for so long!

I’m doing better now. Not anywhere close to myself. I don't think I’ll ever be back to normal. But at least it feels like I’m finally getting slowly better instead of worse.

Sorry for late response! It really is nice to have someone to talk to that understands. I say that all the time but it makes a world of difference. I was 16 when I was diagnosed with hypothyroid, hashimotos with goiter and nodulitis. Very long terms lol. My mom knew my neck look big but I also lifted weights and was very fit so she had no idea. I was never sent for a biopsy on the nodules just scans. I ended up having the surgery when I turned 21 to remove my thyroid. My thyroid instead of growing outward it grew in every crevice in my neck so it was a bit difficult for my dr to remove and the surgery took longer. I felt miserable for at least a year after that surgery. But since I was used to being hypothyroid so I tend to do better closer to the hypothyroid range. I did have to be in suppression therapy for years after due to the cancer.

Your poor daughter! It is pretty miserable but she will build up strength she just cant give in! She needs to push through and she needs to talk about it even if she sees a counselor. She will feel better this is temporary. Did they say what type of cancer it was? I didn't have to have radiation I had the total thyroidectomy then had the radioactive iodine done. My cancer did spread to a lymphnode but the doctor removed it at the time of the surgery.

Oh also she needs to make sure she keeps her nutrients up even though it's hard when you feel so unwell. If she is not eating much have her drink ensure. It will help! I couldn't eat very much after the surgery. My cancer didn't go to my chest so I can only imagine how weak that would make her. Important thing is to eat as healthy as possible. Dont eat any meat or eggs or chicken that are packed full of hormones and do some juicing as that will fill her full of good cancer fighting agents. I did a ton of research about that. I do hope she starts feeling better soon!

Sorry, now I know what you mean by saying you have advanced thyroid disease with TSH 2.5. You werent talking about advanced hypothyroidism you meant advanced thyroid gland disease w multiple growths etc.

but with a TSH 2.5. I never had to deal with growths TG I'd rather have advanced hypothyroidism. I would be hesitant to undergo.any thyrpid surgery knowing how delicate.that area is. Ok now I understand what you meant. Ok. Apologies. You.and your.mom have been through a lot.

You gave lots of good advice except for the Ensure which is GMO soy and can increase inflammation. It should be taken off the market.

You still misunderstand, Mar, I am talking about the whole thing. Advanced hypothyroid disease. Everything, the whole bananana. The whole enchilada. Everything!!!!!

I have fought with every cell of my body to deal with this absolutely dibilitating disease. I’ve been in a knock-down-drag-out-fight with this disease and it hasn't  been pretty for sure.

TSH only tells us how our pituitary gland is responding to the body’s functions. It says NOTHING about the amount of thyroxin in our blood, nothing about the functionality of the thyroid gland, except in certain situations. That makes the TSH  test only mildly useful at best.

Really, how helpful is a test that show results that are only useful within a certain range? Well, if its above 5, we’re pretty sure you’re hypothyroid, but you could be hyperthyroid. But if its below 5 and above 2, we’re pretty sure you’re hypothyroid, but you probably aren't enough to treat, so we’ll do nothing, even though we REALLY don’t know for sure if you have a serious problem. So we’ll do a needle biopsy to check, but we don't know if our sample is reliable, so that’s only really valid if its positive for cancer. But if its positive for cancer, we really don't know  for sure until we do this other test... surgery.... That’s ridiculous. Nothing they test is truly reliable!

 In the early stages of disease, the putuitary gland is going to try and solve the hypothyroid problem by increasing thyroxin production by increasing TSH levels. Think about it. If your pituitary keeps pumping out TSH and gets no response from your thyroid gland, the brain isn't going to continue wasting energy producing TSH. Instead, its going to start shutting down “unnecessary” body functions (starting with the over production of TSH) to try to preserve energy.

I chose to find options other than surgery because I refused to be frightened by the threat if the “C” word. Cancer is JUST, SIMPLY a cluster of confused cells. 

PLEASE  don’t think that what I’ve endured is minimal, just because I’ve chosen a different treatment route.

While I’m at it, chuck the “it’s genetic”  in the trash. There are so many environmental factors,  habitual factors and dietary factors within families,  that blaming genetics because someone else in your family has the same illness is harmful, fatalistic,  and just wrong. Families eat the same diets, tend towards the same habits. These habits are what determines the disease in our bodies. Genetics are only a possibility. There are literally a million reasons my mother has thyroid disease and  a million more reasons to explain mine.  I happen to have had some very specific environmental factors that line up like a recipe for hypothyroid disease.  I choose to believe the statistics that 95% of health is non genetic factors. I should also explain that my education is as a scientist, the area of science- molecular biology and genetics. I prescribe to nurture vs nature- the idea that environmental factors are stronger determinants of survival than genetics. I put little weight  on genetic testing, as it is simply a data point and nothing more. ANYBODY can design and market  a test. Just because a test is available, does not mean it holds validity. Again, millions of “proven” scientific  theories have been disproven. Our beliefs aren't necessarily any more valid than any other beliefs, past or present. 

When you look at thyroid disease by questioning the given assumptions, you have a very different perspective. We are all told certain things by our doctors, based on a business model. When I threw out every assumption and re-examined each one,  is when I started to see what worked and what didn't. This was when I was  able to start healing myself.”

Thanks mar! Yeah I was unaware that ensure had gmo in it. Just needs a way for her to get nutrition down when she is not feeling much into anything. Do you have any other options that would be better for her? Definitely let her know! This poor girl needs all our support to help her feel better and build up her physical and emotional strength.

Thyroid disease is found to be more genetic then they ever believed. Especially the different types of thyroid cancers which are.so genetically linked that it can't be denied. Just read about all the newer research. It's an eye opener. Too tired to search for the research paper it's somewhere on this forum. Maybe administrators can help with this. Of course the environment, food supply. etc can influence the gene expression but there are still so many genetic components involved. Maybe people can ask for the tests when dxd and then family members-if they want- can be tested.to see if they

carry these genes. Or maybe they are already testing people who are dxd to learn more and help with treatment and prognosis like they are doing with other cancers.

Orgain protein shakes or Orgain nutritional shakes are better option than Ensure which is GMO soy protein...Which unfortunately in the USA most hospitals and nursing homes love to give to their patients/residents. Ensure should be taken off the market once and for all in my opinion.

When my mother waa having problems, I made smoothies for her. I used protein powder with a little fruit and almond milk.  I use organic whey protein powder. I’m not a fan of dairy but its REALLY difficult to find good quality organic  protein powder.