My thyroid is also high but right around 150. I’ve tried countless times to get help from drs but they misdiagnose me telling me that I’m only a “drug-seeker” trying to find an easy way to lose weight. My test results were skewed and there was a mixup in the lab because my original report was missing pages and was not included in the full report posted to electronic record, so I knew it was wrong. They reported it at 1.56, which is wrong because I had high levels of tpo and thyroid peroxidase. I can’t understand how this happens, so I ended up testing myself with a rapid test that came out at 156 TSH level. My drs were complicit in misdiagnosing me so that I couldn’t get the help I needed and they just thought I wanted to use it to lose weight, but all I wanted was to feel better. I have a huge goiter on my neck and can’t swallow very well, and it’s interferting with my daily life as I have high blood pressure, cholesterol, and have been experiencing heart attack symptoms which I know is a direct result of untreated hypothyroidism. I’m angry and hurt that I can’t receive the right care. I’m on the verge of giving up and allowing myself to just have a heart attack. I can’t take it anymore but hopefully I’ll be able to find someone to help me finally. It will probably be at the last moment when my goiter is so large I will not be able to breathe. I need advice on how to advocate for myself.
Not getting it. How could your daughter be that sick and you never raised a question, and NOW you want to understand her health?!! I don't think so.
I’m so sorry you lost your daughter. I hope you are able to find answers. It never occurred to me, until reading about your daughter that now that we have the Internet, people who can’t afford medications should try to post it on Facebook and other venues, maybe even start Go Fund Me’s for this. God bless you parents.
It is not the TSH (thyroid stimulating hormone) that is the key here -- that's just a red flag which tells you that you need further lab tests. The TSH is a red flag that thyroid hormone is not getting into the cells. When TSH is high, you need to measure thyroid hormone: FT4 and Ft3 to see where the deficiency is.
But if the Ft4 and Ft3 are high or normal - then she could have a TSH-secreting tumor on the pituitary that then causes too much TSH and in turn, too much FT4 and FT3.
Either scenario can eventually lead to death.
FT4 and FT3 need to be balanced toward the middle of the reference range and kept there.
If you ever know of anyone in this situation again, here is what I would tell them. Generic is real cheap at Wal-Mart. That said, generic only has to have 80% of the medication, so is not reliable. The name brand Synthroid is expensive, but you can currently get a coupon for it, if you have insurance, for $25 a month, online. There are other programs for those without insurance. Please tell anyone like this that it is like a diabetic not taking their insulin shot - or taking their shot and not eating.
I am so sorry for your loss.
I'm so sorry for your loss.
So very sorry to read your story. I can't imagine the loss and grief. I have a daughter who is Hashimoto's as well as Addisons. The Addisons is what send her to the ER. A crisis is when an Addisons person is lacking sodium and cortisol and as result can lapse into coma and then cardiac arrest very quickly. Did they medical team ever determine if she had Addisons? My heart goes out to you and your family.
I am so sorry to hear about your daughter. I was recently hospitalized because of my thyroid levels reaching 225. I was losing sight, cognitive function, speech and mobility. I had no idea I had thyroid issues until the doctor ran my blood. He said I was on the verge of seizure and coma and that I most likely would have died without going into the ER. My experience is that thyroid can certainly be a cause of death. I had no idea.
No doubt it was. That is dangerously high, and it’s strange they were not more certain about it. I’m wondering if they are afraid of lawsuits so they go for the simple reason in case it’s wrong. I am not a doctor , but I remember when I first was diagnosed hypothyroid, I was over 200, and the Doctor said I was close to a Coma. ( but I was also having severe symptoms , falling asleep sitting up, leg swelling, bloating, mood swings, this is why I was tested) How long was your daughter off meds?
Hashimoto's Hypo-Thyroid Encephalopathy. My 11 year old daughter was misdiagnosed and ten months later wound up in a coma with extreme high TSH caused by this autoimmune disorder "Hashimoto;s Encephalopathy" or HE. Back in 1998 people had never heard of this and there was little information. Today much more information is available but most victims have to insist their doctors consider this diagnose.....get TESTED is all I can say. My daughter wound up in a coma for 9 days and suffered a TBI as a result of this misdiagnosis.
I am so terribly sorry for the loss of your daughter. By what you described, it sounds as if she may have had a “thyroid storm”. Again, I’m so very sorry for your loss.
I am so terribly sorry for the loss of your daughter. By what you described, it sounds as if she may have had a “thyroid storm”. Again, I’m so very sorry for your loss.
I realize that the original post was about a deceased daughter. This thread is over 4 years old and mkswconcernedmother has not been active on the forum since she posted it.
My question was for Nikkicalzaretta1, who stated in her post from 11 hours ago that her TSH is approaching 400. My question is why it has been allowed to get that high and whether she's on thyroid replacement medication.
@Barb- This is about a deceased daughter who stopped taking her thyroid meds because of the cost.
@mkwsconcerned mother. My sincere condolences for your loss. I pray for your peace and healing. The loss of a child is unfathomable to me and though the search for the reason why is understandable there may never be a good answer at this point. An otherwise healthy heart can still be affected by hormonal imbalances that influence the hearts actions, so thyroid related issues can still not be ruled out. But it is also possible something else contributed to her death, perhaps the severe anemia you mentioned (or it's underlying cause) which could certainly cause brain hypoxia.
Again, my sincere hope that you will find eventual peace in your grieving.
Why has your TSH been allowed to get so high? Are you not taking a replacement thyroid hormone? If you've had a thyroidectomy, you must have thyroid hormones to replace what your thyroid would have produced.
Are you getting tested for Free T3 and Free T4, as well?
My deepest condolences go out to you!!!! My TSH is currently approaching 400 and I have days I can't even really walk or move. My blood pressure is very high, I'm fatigue all the time, can't sleep from body aches, memory loss, weight gain, hair loss, etc
I went to the ER the other night because I was vomiting and have had diarrhea for 2 weeks and my temperature goes crazy the dr looked at me crazy when I told him my concern with my TSH and brushed it off. My dr recently put me out of work and does not want me driving either. Levels like this can cause you to go into a coma. I also had a full thyroidectomy.
Google "Myexodemic Coma" and check it with her symptoms. Lack of thyroid hormone can cause this type of coma and even death.
Sorry to hear about your daughter, my deapest condolences go out to yourself and your family.
There are people who are walking around with a TSH of 300 with symptoms of being severely hypo....
It is very dangerous to discontinue thyroid hormone med's because they are actually replacing the function of the thyroid gland that is either not working correctly due to a thyroid condition or surgically removed due to a thyroid condition. Being hypo can and will cause other health issues that makes it very hard to function normally. The thyroid gland is a very important gland that controls more than the metabolism in the body and when it is not working correctly, other organs in the body can be compromised.
I am on Synthroid due to removal of my thyroid gland and because my tsh level is above normal, i am having issues with other areas...such as my heart. I faithfully take my med, knowing that if i don't....i will suffer consequences.