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I strongly advise you to purchase the book Stop The Thyroid Madness or study the website of the same name. The book taught me that what most doctor prescribe for thyroid issues (T4-only medicines such Synthroid, Levoxyl, etc) are not the best for many patients. Instead a Natural Desiccated Thyroid medicine (such as Armour, Naturethroid, WP Thyroid, Acella’s NP Thyroid, etc) work much better.
You can control the weight gains, hair loss, exhaustion, coldness, etc, etc better with a Natural Desiccated Thyroid because it contains T4, T3, T2, T1 and calcitonin vs a T4-only medicine.
First, I want to say Merry Christmas. Second, you're not alone. Many of us have had the symptoms of thyroid disorders and were incorrectly diagnosed as being normal.
> it's pretty likely I have hashimotos, and I guess I'm just kind of furious this was all missed
I felt the same way. The women in my mom's side of the family have a history of Hashimoto's and other autoimmune disorders. For years I had all the symptoms of Hashimoto's/hypothyroidism and doctors kept telling me my TSH levels were normal. It wasn't until I finally started seeing a functional/integrative medicine doctor who did a bunch of other tests that the previous doctors had never done, that I was finally told that I have Hashimoto's/hypothyroidism. There are so many tests that people need to be done to diagnose thyroid disorders that are usually never done by regular doctors. I was started on levothyroxine which didn't do a damn thing and was switched to Armour about two years ago and the difference is night and day. I was suddenly able to go through an entire day without napping or needing to drink 5 coffees/energy drinks a day.
Go to your doctor and ask for these tests.
Here are some links about thyroid disorders that I found very helpful at the beginning...
Stop the Thyroid Madness (one of the best resources I've found for people with thyroid disorders)
STTM YouTube Channel
There are also countless amazing groups on Facebook to join to learn and get help for thyroid issues. If you're interested, I can post a few links to them.
Read these two books...
Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment 2nd Edition. by Janie A. Bowthorpe (Amazon link)
Stop the Thyroid Madness II: How Thyroid Experts Are Challenging Ineffective Treatments and Improving the Lives of Patients Paperback – July 31, 2014. by Andrew Heyman (Author), James Yang (Author), Janie a. Bowthorpe (Amazon link)
> My TSH levels were good back in 2015, but I still felt hyper. Is there any way that this could be possible or am I just grasping at straws here?
> Also why do I have heart palpitations now, when I'm hypo?
Did you already start medication for your thyroid? If so, which medication and what dose? You could be on too high of a dose or too low.
Speaking of thyroid medication, do you know about the two types of thyroid medication? There
are synthetics like levothyroxine and NDTs (naturally dissected thyroid) like Armour. NDTs (natural thyroid) is far superior to synthetics like levo, but the problem is that endocrinologists won't prescribe them. You have to go to either your primary care doctor or find a naturopath, functional medicine, or integrative medicine doctor to be prescribed an NDT like Armour.
Here are some links to learn more about the difference between NDTs and synthetics...
Jeffrey Dach MD: Why Natural Thyroid is Better than Synthetic
Stop the Thyroid Madness: Natural Thyroid 101
Amy Myers MD: Which Thyroid Medication is Best?
Hypothyroid Mom: Which is Better, Synthroid or Armour Thyroid Medication
OP-ED News: New Study Shows Natural Thyroid Better than Synthetic
Thyroid.org: Summaries for Patients from Clinical Thyroidology (from recent articles in Clinical Thyroidology): Desiccated thyroid extract vs Levothyroxine in the treatment of hypothyroidism
You also mentioned you have a cortisol problem. What cortisol test did you have done? If you just had a standard blood test, that one doesn't really mean anything and is very inaccurate. The saliva cortisol test is the most accurate and I would urge you to ask your doctor for it. The reason for this is that the saliva test is done at 4 seperate times throughout a day, versus the blood test which is either once or twice a a day at the most. Our cortisol levels change throughout the day so just getting tested once or twice (like with blood) is inaccurate. For the saliva test, you either spit or swab your mouth 4 times throughout the day, usually when you wake up, then 4 hours later you test again, test again 4 hours later, and then the final test is right before you go to sleep (if I remember correctly) and then you send it off to the testing place or return it to your doctor. What are you taking for your cortisol issue? I have very high cortisol and the only thing that I've personally found to help is Cortisol Manager by Integrative Therapeutics (Amazon link).
Do you have any other questions?
You're likely having problems because you're on synthetic thyroid meds which don't work for the vast majority of people. I was on levo for about a year and it didn't do anything. After switching to an NDT (naturally dissected thyroid) called Armour thyroid I saw improvement the same day. There are other NDTs/naturals besides Armour including WP Thyroid, Nature-Throid, and maybe one or two others that I can't remember. I know 6 other people in my town who did the same including my mom and countless people online who have done the same thing. Synthetics like levo only help your T4, while NDTs/natural help both T3 and T4, which is why synthetics don't work for the vast majority of patients. How much do you know about NDTs? Have you ever been on them? Who is prescribing your meds?
EDIT: Here are the links I mentioned...
Links Proving Why NDTs (natural) are Better than Synthetics
Stop the Thyroid Madness: T4-only meds like Synthroid do NOT work, exclaim patients!
Good Sources of Information About Thyroid Disorders
Stop the Thyroid Madness (STTM) (one of the best resources I've found for people with thyroid disorders)
Hypothyroid Mom (HM)
HM: Top Thyroid Resources (this link is amazing because it lists all sorts of websites and resources for thyroid patients)
STTM: Recommended Labwork
STTM: TSH – Why It’s Useless
STTM: Optimal Lab Values–how to interpret your results
STTM: Options for Thyroid Treatment
STTM: How to Find a Good Doctor
Stop the Thyroid Madness (STTM) books
Amazon: Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment 2nd Edition. by Janie A. Bowthorpe
Amazon: Stop the Thyroid Madness II: How Thyroid Experts Are Challenging Ineffective Treatments and Improving the Lives of Patients Paperback – July 31, 2014. by Andrew Heyman (Author), James Yang (Author), Janie A. Bowthorpe
Thyroid Support Groups
I personally have only been in some of these groups so I can't verify how good or active each group is. I just found them by doing a search. If I knew what country you lived in, I could try to find some for your country.
Facebook Group: Thyroid Support Group
Facebook Group: Hypothyroidism
Facebook Group: Hypothyroid Support Group
Facebook Group: Hypothyroid Ladies (for females)
Facebook Group: Underactive thyroid
Facebook Group: Thyroid Family: Hypothyroidism Advice & Support Group
Did you have any questions or anything else you were curious/concerned about?
Have you read the Stop the Thyroid Madness books or checked out their website or YouTube channel? I learned so much when I first got my diagnosis from STTM and Hypothyroid Mom is another great resource (and no, HM isn't just for women or moms, it's for anyone with a thyroid condition.) I got the books for my mom and then she passed them around to my aunts that all have hypothyroidism and Hashimoto's.
Stop the Thyroid Madness
Stop the Thyroid Madness Facebook
Stop the Thyroid Madness: Comparing the Two Books
Amazon: Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment by Janie A. Bowthorpe
Amazon: Stop the Thyroid Madness II: How Thyroid Experts Are Challenging Ineffective Treatments and Improving the Lives of Patients
Hypothyroid Mom Facebook
If you're interested, here are some links discussing the differences between NDTs (naturally dissected thyroid) and synthetics and why NDTs work better for more people...
Please please please get this Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment
What country do you live in? Certain thyroid meds are called different names depending on the country. If I know what country you're from, I could try to find out what NDTs are available in your country.
I have just edited my previous comment and included the links that I previously mentioned.
Also, make sure you read the Stop the Thyroid Madness books (there are two books). You buy them online (first book on Amazon and second book on Amazon) or even get them from your local library. They're very helpful for those with thyroid disorders.
Since my first comment was removed by someone and I wasn't given any info or notice, I'm posting it again for /u/Goblin_Cat ...
Did you have any questions or anything else you were curious/concerned about?
I'm not a doctor, just a patient who has been going through this for 5+ years and has had to learn a lot to help myself.
This stuff gets pretty complicated fast so I dont think I can explain it in a short paragraph. But basically any kind of stress has the potential to wreck havoc on your adrenals. That can be ongoing emotional stress or physical stress such as working 3rd shift or having an illness that includes viral, Lyme disease, cancer, black mold exposure and the list goes on. I had black mold exposure and one of my first symptoms was anxiety. My guess is this is your body on alert. Usually at first you will have high cortisol at night. That is why so many people first experience feeling wired and tired at night and cant sleep with feelings of panic/anxiety. Then because of the high cortisol at night there will be low cortisol in the morning and feeling like it's hard to wake up in the mornings.
Mainstream medicine doesnt recognize adrenal dysfunction, so you may see some websites saying it's bs. This is not true. They are just not taught this stuff in medical school. They only recognize addison's which is low cortisol across the board or cushing's which is very high cortisol frequently caused by a brain tumor.
But much more common is adrenal dysfunction which is just mild to moderate dysfunctional cortisol levels like one high cortisol at night or a mix of highs and lows.
To diagnose this there is a 4x cortisol saliva test. The cortisol should be at the top of the range in the morning and then slope down during the day and be low at night so you can fall asleep.
More info here:
"So how does one reach an adrenal fatigue state?
Basically what happens is an over activation of your sympathetic nervous system (SNS) for a prolonged period of time. The SNS is that which activates your fight-or-flight response in the face of stress, whether the stress is emotional (that which you perceive or anticipate) or biological (illness or injury, for example). This signals activation of the HPA-axis, which in turn leads to higher levels of cortisol and more importantly adrenaline (also known as epinephrine). Adrenaline works in the short term, stimulating your heart muscle and opening up blood vessels and air passages, which in turn increases blood flow to your muscles and oxygen to your lungs. Cortisol is the stronger, longer-acting response which increases cellular blood sugar and helps maintain homeostasis."
There is a fb group that helps people with these issues.
Hope this helps. Stop the thyroid Madness is the only website that I trust on this stuff. She also wrote a book and you can see how many good ratings she has. Her research and info is based on years of collecting patient experience.
I want you to know that there's good and bad news...
Bad news: I've been dealing with almost all the symptoms you described so please don't feel alone or hopeless. I can't tell you how alone and hopeless I have felt at times with how my health issues never seem to get solved, no matter how many doctors I go to, and how I felt like I wasn't getting better or getting any answers besides being put on one medication after another.
Good news: I've been going through this for probably 6-7 years now so I've had more time to learn from experience and after talking to others with the same problems and do research. I have some things that I think you should take into consideration. I'm not perfect but I am MUCH better than I was before I finally got some answers and started on the right medication.
Great Plains Laboratory: Organic Acids Test (OAT), Nutrional & Metabolic Profile This is the company that my test went through and it was completely covered by insurance. They emailed me a copy of the results and another paper explaining the results as soon as they completed the test which I liked.
Ben Greenfield Fitness: The Little-Known Test That Tells You Everything You Need To Know About Your Metabolism
Natural News: The benefits of an organic acid test
Low Tox Life: What is the organic acid test or OAT?
Stop the Thyroid Madness: How the Organic Acids Test might help turn things around!
Planet Naturopath: What is an Organic Acid Test
Beyond MTHFR: Organic Acid Test – An Essential Tool for Gut-Methylation Problems
Dr Jockers: Comprehensive Organic Acid Test
Stop the Thyroid Madness: How to Find a Good Doc
Stop the Thyroid Madness: Doctors Need to Rethink
Stop the Thyroid Madness: Give Me a Break!! aka Doctor’s Hall of Shame
I have a bunch of links to help you catch up on all the thyroid news...
Facebook Group: Thyroid Support Group This is a great FB group to join to talk to others with thyroid disorders and learn the latest news
Also, make sure you read the Stop the Thyroid Madness books (there are two books). You buy them online (first book on Amazon and second book on Amazon) or even get them from your local library. They're very helpful for those with thyroid disorders. I learned a ton from these books and wish I had gotten them sooner.
I think I covered most of it. There's not much else I can recommend until you find a doctor and get those tests done. Any questions or comments?
(I copy and pasted this from another comment I made on someone else's post who asked a similar question...)
There are two types of thyroid meds: synthetics like levo or Synthroid and NDTs like Armour, Nature-Throid, WP Throid, etc. NDT stands for naturally desiccated thyroid. Synthetics are made in a lab while NDTs come from an animal, usually a pig, which is why they're called natural. Synthetics ONLY work on T4 while NDTs work on both T3 and T4, which is why NDTs work better for the majority of patients versus synthetics.
You need to find another doctor that will prescribe an NDT like Armour. Endos can't/won't prescribe NDTs, only synthetics that don't work for the majority of thyroid patients (and studies have already proven this). Many people get their primary care doctor or an integrative/functional medicine doctor to prescribe an NDT.
I wasted about a year on levo (and also include Cytomel) until I found a doctor who would prescribe an NDT. I had to leave my endo and then I found a new doctor at an integrative/functional medicine clinic that would prescribe Armour. A little while later, I discovered my primary care doctor was willing to prescribe Armour so now that's how I get it. I haven't seen an endo in years. My mom had to do the same thing, as have countless people that I know because endos won't prescribe NDTs.
Check out Stop the Thyroid Madness and Hypothyroid Mom if you haven't already. They both also have Facebook (StTM Facebook and HM Facebook) and YouTube pages (StTM YouTube) that you should check out. They're both wonderful sources of information and I believe they will really help you.
If you like to read, definitely read the two STTM books:
Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment by Janie A. Bowthorpe
Stop the Thyroid Madness II: How Thyroid Experts Are Challenging Ineffective Treatments and Improving the Lives of Patients by Andrew Heyman (Author), James Yang (Author), Janie A. Bowthorpe (Editor)
I learned so much from these books and shared them with my mom, other family members, and co-workers who have thyroid issues. Everyone loved them and learned so much.
Here is a clip from a study proving NDTs work better than synthetics...
"Participants were “blinded” during both phases – they did not know the type of pill they received. After each treatment period patients were weighed, had blood tests, underwent psychometric testing and were asked which therapy they preferred. The researchers report that 49% of the patients preferred desiccated thyroid extract, 19% preferred levothyroxine and 23% had no preference. Desiccated thyroid extract use was also associated with more weight loss." - Summaries for Patients from Clinical Thyroidology (from recent articles in Clinical Thyroidology): Desiccated thyroid extract vs Levothyroxine in the treatment of hypothyroidism
Here are a few quick links I found that I believe will help...
Links About NDTs vs Synthetics
STTM: T4-only meds like Synthroid do NOT work, exclaim patients!
STTM: Natural Thyroid 101
STTM: Transitioning from T3-only to natural desiccated thyroid…or vice versa
STTM: History of desiccated thyroid as a grandfathered in, yet “unapproved” drug
Links About Doctors
STTM: Doctors Need to Rethink
Hypothyroid Mom: 5 reasons conventional doctors can’t fix your thyroid
Links About Thyroid-Related Tests
Finding another doctor will not be a problem. Finding a good one might be a challenge.
I am just about to order a book from Amazon. Which one would you say is better – "Stop the Thyroid Madness!" or "Tired Thyroid"?
Levo doesn't work for the majority of thyroid patients. Levo is a synthetic thyroid drug while older NDTs (naturally dissected thyroid) like Armour work better for the majority of patients (source). I was on levo for over a year and it did nothing. Levo didn't work for myself, my mom, all my aunts, and several coworkers and friends but once switched to an NDT, it helped almost overnight.
Do your best to educate yourself about thyroid disorders and the medications used. Here are 2 good sources to check out. Read everything you can and read the two StTM books ASAP.
Stop the Thyroid Madness (StTM)
Two books on Amazon or you can get them from your local library:
Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment
Stop the Thyroid Madness II: How Thyroid Experts Are Challenging Ineffective Treatments and Improving the Lives of Patients