Avatar universal

TSH of over 300

Our daughter recently passed away for no obvious reason.  She passed out and never regained consciousness. Testing in the ER indicated she was extremely anemic and her TSH level was right at 300.  Cardiac testing showed no deficiencies in her heart rhythm and CT scans ruled out an embolism.  The doctors had no real diagnosis and charted the cause of death as lack of oxygen to the brain.  A neurologist suggested the TSH level could have caused a heart attack, yet the cardiologist said her heart was healthy.  She hahad taken synthroid medication over the years, she had Hashimoto's thyroid disease, and had recently quit taking her meds because she was in between full time jobs and had no health insurance.  We had no idea she had discontinued her meds.  Do you think the TSH level was responsible for her death?
20 Responses
929504 tn?1332585934
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.

I don't understand why people take Synthroid when all you need to do is take iodine. Medical doctors aren't educated about iodine so they scare you by telling you it's dangerous and yet iodine is one of the essential elements for the human body. People who eat a lot of fresh seafood rarely develop thyroid problems because seafood contains higher amounts of iodine than land based foods.
Hi mrhealtheman,

You are commenting on a very old thread and most of the people on this post are no longer active on this site.  If you have a question, please start a new thread by clicking "ask a question".

As for should people just take more iodine if they have hypothyroidism:

In many westernized countries, including the US, iodine is added to salt and thyroid problems are not usually caused by an iodine deficiency.  Iodine is present in many foods, and people on a low-iodine diet are advised to avoid: iodized salt, grains and cereals, some breads, fish from the sea, shellfish, beef, poultry, pudding mixes, milk and milk products.  

In most cases in the US as well as many other countries, hypothyroidism is caused by an autoimmune disease called Hashimoto's, where the body develops antibodies against the thyroid itself, ultimately leading to thyroid tissue destruction and hypothyroidism.  No amount of iodine will reverse this damage, and therefore many people need to take supplemental thyroid hormone like Synthroid.  In fact, studies done on people with autoimmune thyroid conditions found that even taking a low-dose iodine supplement increased hypothyroidism symptoms by provoking an increased attack on the thyroid.  There is a study that shows that restricting iodine in people with Hashimoto's can actually improve thyroid function in the majority of the people tested (78%).  From what I can find, if you have Hashimoto's, taking more iodine might actually be doing more harm than good, and you should discuss this with your doctor.

In countries where iodine isn't already abundant in food, then yes, taking iodine or "eating fresh seafood" may help prevent thyroid problems, but I feel it is dangerous to tell people with hypothyroidism just to take more iodine when that may not be the cause of their hypothyroidism, and leaving it untreated can be very dangerous.  

I'd also like to point out that too much iodine can be very dangerous, and might have a similar impact as too little.  In countries where seaweed is popular (a rich source of iodine), there is an association of seaweed consumption and an increased risk of thyroid cancer in women.  

Thyroid hormones are complicated, and I'd advise anyone who is planning on treating their hypothyroidism by taking iodine to please, please talk to your doctor first, and find out if the hypothyroidism is due to iodine deficiency or an autoimmune disease before increasing iodine intake because it can sometimes do much more harm than good.
Avatar universal
Google "Myexodemic Coma" and check it with her symptoms.  Lack of thyroid hormone can cause this type of coma and even death.
Avatar universal
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.
649848 tn?1534633700
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?
Avatar universal
@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.

I think that is possible. Oxygen can’t get to cells without thyroid. Also ferritin levels were probably absent which would also cause lack of oxygen. I don’t really understand though. I’ve never had insurance and synthetic was only about $20 a month. Even when on natural thyroid or t3 it was about $80 at the most. Not too expensive to afford if you’re working two jobs.
You've commented on a thread that is 8 years old and none of the previous posters are active on the community at this time.  It's unlikely anyone will respond to your comments.
649848 tn?1534633700
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.
Avatar universal
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.
You've commented on a very old thread and none of the previous posters are active on the forum any longer.  However, for your information, thyroid storm is when one has too much thyroid hormone, which is indicated by low TSH levels.  With a TSH of 300, the indication is severe hypothyroidism or low thyroid hormones. Most likely, the patient had suffered from myxedema coma, caused by lack of thyroid hormones.
Avatar universal
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.
As @Barb135 stated above: "for your information, thyroid storm is when one has too much thyroid hormone, which is indicated by low TSH levels.  With a TSH of 300, the indication is severe hypothyroidism or low thyroid hormones. Most likely, the patient had suffered from myxedema coma, caused by lack of thyroid hormones."
Avatar universal
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.
You've commented on a very old thread and has been noted above, previous posters are no longer active on the forum, so it's unlikely they will respond to your comments.

I'm very sorry to hear about your daughter. Although there is more known about HE now, I think there is still too little known about it.  It's my belief that not enough research goes into thyroid related conditions and/or the adverse and possibly long-lasting effect(s) a malfunctioning thyroid can have on the body.

"The exact cause of Hashimoto's encephalitis (HE) is unknown, but is thought to relate to autoimmune or other autoinflammatory processes. While it is associated with Hashimoto's thyroiditis, the exact nature of the relationship between the two conditions is unclear. It does not appear to be directly related to hypothyroidism or hyperthyroidism.[1]"  
Avatar universal
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?
As noted above, you've commented on a very old thread and none of the previous are active in the community at this time.  

The TSH level doesn't determine how close to coma one may be.  Myxedema coma is caused by severe hypothyroidism.  Although some doctors do use the TSH level to determine whether one is hypothyroid or not, it's the levels of actual thyroid hormones, T4 and T3, that determine the degree of hypothyroidism.  TSH is merely a "messenger" from the pituitary gland.
Avatar universal
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.
Avatar universal
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.
Avatar universal
I'm so sorry for your loss.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
244602 tn?1215975628
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.
Welcome to our Community... This is a very old thread and the original poster is no longer active on the forum so it's unlikely you'll get a response to your question.  If you have other thyroid related questions, please feel free to start a new thread of your own so your questions/comments can get the attention they deserve...

You can start a new thread by clicking the "Ask a Question" button at the top of this page.  
How could you make these parents feel worse than they already do?! I am glad they didn't have to read your comment!
Mrs_C_Hdz... I'm not sure to whom you are referring, but this is a very old thread and the original posters have not been active on the forum for 9 yrs.  

If you have other thyroid-related comments/questions to ask, please feel free to start your own new thread and we will be happy to answer any questions you might have.
Avatar universal
My thyroid lev why
Avatar universal
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.  
Im sorry you seem to be neglectd by incompitant & uncaring health "providers". Goiters are enlarged thyroids trying to compensate for too low thyroid hormone, tyqically. A current "Thyroid Panel" is best, for a 2° opinion, from a knowledgable MD/PA/DO/RNP, that CARES. Call you insurance; ask Q.s, fill a complaint with FACTS; check "HEALTHGRADES". HypOthyroidism can cause many signs (wt. gain, slow HR, dry skin, thinning eyebrows...) & SYMPTOMS ( feeling cold, tired, "brain fog", depressed,..)  HOWEVER, too much thyroid hormone from medication or HYPERthyroidism can really stress the heart & brain !! Get WELL Soon. *info from Merck Manual, profes.
The original poster is unlikely to  respond to your comments as this thread was posted 9 yrs ago they haven't been active since then.

In regards to your own situation, if TSH is the only thing you've had tested, you need to get a complete thyroid panel that includes Free T4 and Free T3.   If you had Free T4 and Free T3 tested, please post the results and their corresponding reference ranges since ranges vary from lab to lab and have to come from your own report.  That will help us determine your actual thyroid status.

TPO is the same as Thyroid Peroxidase.  Thyroid Peroxidase Antibodies (TPOab) is one of the antibodies that attacks the thyroid when one has Hashimoto's.  That's what would have been tested.  

Your  TSH of 156 could have been a matter of the decimal point being in the wrong place or different units being used.  

Rapid tests are, typically, those done by finger stick at home, of which most doctors tend to be skeptical.  You can order tests from online sites that will have you go to an actual lab, such as LabCorp or Quest, that are much less expensive than some  Rapid tests.  Although many doctors don't like patients deciding what  which blood work to order, they will take these tests self-ordered seriously because they're done by national labs.

You seem to have some of the many symptoms of hypothyroidism, so you should follow the advice you gave the original poster and file a complaint if you're receiving poor treatment.  Then check Healthgrades to find a doctor who will do proper testing (or order it yourself without a doctor's order) and get all the proper testing done.  

I'm somewhat baffled by your comment that you're ready to "give up and allow yourself to have a heart attack".  If you're having symptoms of a heart attack, there's little one can do to prevent it, and I strongly urge you to go to the nearest ER to be checked out.

There are symptoms of hypothyroidism that can make us feel like we're having a heart attack even when we aren't.  Those can include, but aren't limited to heart related symptoms or digestive symptoms.  They all need to be investigated to make sure that irreparable damage isn't being done to your body.  

Again, if your current doctors aren't giving you the care you need, please be sure to check around for doctors that will help you.  
Avatar universal
It would be easy to not respond to your post, but on the chance that you have issues that we may be able to help with, please tell us more.
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