Hashimoto's/Hypothyroidism

[Dan Murphy]

I was diagnosed with hypothyroid almost 40 years ago. My symptom was feeling cold, very cold. Uncontrolled chills at times. A nurse friend of ours told me to get checked for thyroid concerns. I did and have been on Synthroid ever since,

 

[MinnieFan4ever]

I was diagnosed about 3 years ago. First things first, I was told to go gluten free. The gluten will raise the antibodies. It was a little hard at first but now it’s not a dig deal at all. I also found a functional health practitioner. She has helped me like no other. I am fortunate that my GP and her are on the same page.

When this all started with me, I also had NO energy. I felt like all day I was walking through mud. I also had really bad brain fog. I don’t know which was worse. My energy is back but the brain fog has stuck around. I will say it is better, some days are better than others.

Good luck!

 

[ILoveMyDVC]

I have Hashimotos and thyroid cancer. Had my entire thyroid removed in 2012. I was super high energy, thin and fit before thyroid disease - never had a weight problem in my life. . I tried Synthroid and Levo and couldn't make the drive to work without having to pull over to sleep and I gained big weight.
I ended up on Armour Thyroid and my life changed completely. My husband's great aunts had thyroid issues in the 1940s and they took the equivalent of Armour - it's been around forever - big pharma likes Synthyroid and levothyroxene and they work for millions - although I wonder if those millions would feel even better on the original drug that's been around for over 100 years...anyway CVS, Walgreens, they all have Armour Thyroid a.k.a desicated thyroid hormone - you will need a Rx just like any other real thyroid replacement.

Just beware of advice from those hawking "natural" products or diets that claim to get your thyroid under control. People still tell me how they know "someone just like me" that took XYZ and is now cured. I don't have a thyroid and I would die if I stopped taking a replacement. No magic diet will cure me nor would have cured my 6 malignant nodules.

Good luck. Read everything and be willing to go to a different endo, if you have to.

ps. I eat anyhting I want except SOY because that is the enemy of thyroid CANCER. People will claim every other food will cure or kill you. Smile politely and move on. If it were that simple, it would be that simple and millions would not suffer.

 

[smilie]

Thank you everyone for all of the replies, it has helped immensely! Yesterday was one of those horrible days where I felt like everything was too much to handle and had absolutely no energy. Self pity party I guess, lol. But it helps to know that you aren't alone. I'm sorry so many people have to struggle with this. It's not fun. But sharing experiences is great!

 

[Meglen]

I have both, it has been a struggle the last few years. I thought I was just lazy or depressed. Family assumed I was just lazy and just loved to sleep alot. Turns out it was my body. I was stable with lower doses of levo for awhile but get blood work every 6 months and needed it raised almost Everytime. Right now I'm on 125 and it was just not doing it. So they added liothyronine 5mcg to my daily and it has helped alot. I wish you well on your journey it will go up and down and never ends. Just make sure you take your pills the same time everyday 30 min before food or 2 hours after. I changed to taking mine at night and it has also helped me not feel so sleepy during the day.

 

[smilie]

What has everyone done for their hair? Mine is thin and frizzy! I hate it. If this disease is going to make me gain weight, at least let me have nice hair!

 

[snappy]

I take Biotin. I believe it helps.

 

[Southernmiss]

What has everyone done for their hair? Mine is thin and frizzy! I hate it. If this disease is going to make me gain weight, at least let me have nice hair!

Have your nutrients checked for deficiencies. Good Vitamins specific to what you need makes a big difference.

Get a good haircut that works for you.

It takes a long time for hair to grow in.

Our daughter lost her long thick beautiful hair last spring due to another medical issue and it has been so thin and frizzy this year. It has started to grow back, but it isn't happening fast enough for us. She got a hair cut about 2 weeks ago to shape it up. The cut is short (for her-touches her shoulders) and cute and we are hoping that having the frizz and dead ends out will help it to grow faster and thick again. She has taken all the vitamins she needs and extra collagen and biotin, but it's still a very slow process.

 

[Southernmiss]

This post is very timely. I was just diagnosed hypothyroid today.

Thoughs who have been diagnosed what were/are you symptoms? Did you have any ? My thyroid wasn't even on my radar I was thinking liver or gallbladder.

Thyroid issues can cause low digestive enzymes. Izabella Wentz that i mentioned before talks about HCL betaine and Pepsin. Once I started taking those before meals, I stopped having the gall bladder pain. Many people take things that suppress stomach acid, when actually the pain is because of low acid and not too much stomach acid.

https://thyroidpharmacist.com/articles/hashimotos-and-low-stomach-acid/

 

[siren0119]

Diagnosed with Hashimotos Hypothyroid 11 years ago, though after reviewing my medical records we figured out I was probably symptomatic for at least 6 or 7 years before that.

It's such a finicky disease, not everyone presents the same (you'll eventually learn what your "pet" symptoms are - mine are digestive issues, fatigue, and a weird fibromyalgia-like pain in my hips and feet). And not everyone's therapeutic range for TSH is the same, so if you don't know what your "normal" TSH level it's a game of shooting darts in the dark to figure out where your therapeutic range is after your TSH is off the charts.

I will echo others who have suggested getting all your labs and familiarizing yourself with them. It's really the only way you'll be able to know how the disease affects YOU and work on tailoring your medications. Learn about how TSH, Free t4 and free T3 work and the roles they play in telling you about your thyroid health and how your body is reacting.

I do not have an issue converting T4 into T3, so taking Synthroid is *generally* enough for me in terms of keeping my TSH low. But I do get adrenal fatigue and also have an issue absorbing vitamin D so about twice a year I have to go on a super high dose of D for a week. Folks who have T3 issues sometimes do better on natural thyroid replacement, but for me anything that was T3 focused made me feel WORSE.

Hashimotos brand of hypothyroidism is an autoimmune response - so that means your antibodies think your thyroid is a foreign body and they are attacking it. This means your body is basically CONSTANTLY in a state of inflammation. You may find that certain foods don't agree with you anymore, or that you feel better when you eat more of an anti-inflammatory diet. I don't have a gluten intolerance, but I definitely have a lower tolerance level for gluten products and periodically need to do a strict AIP diet for a couple of weeks to "reset" my body and bring the inflammation down. This also means that when I do any kind of hard exercise, it takes me twice as long to recover. And when I tire myself out (like, when we moved and spent two intense days moving between apartments and cleaning the old apartment) I need two or three days of early bed and taking it easy to recover. I hate it because I used to be really active, but I've learned to accept the limitations in my body and try and work WITH them rather than against them.

Sorry for the long post - I'm not an expert on Hashi's by a longshot but I've become pretty in tune with MY experience having it. I'd just encourage you to do the same - learn as much as you can, and become an expert on how it affects you. Also - make sure you have an endocrinologist that doesn't ONLY listen to the lab reports, but also listens to you and your symptoms. I had an endo for a while that was all focused on lab results, even though I was still feeling like crap - he wouldn't change my dose because I was "technically" in the normal range. Come to find out that Hashi's patients should really be on the LOW end of normal TSH because of the inflammatory nature of the disease. I was in normal range but not low enough to really feel anything close to "better".

 

[siren0119]

I was diagnosed with hypothyroid almost 40 years ago. My symptom was feeling cold, very cold. Uncontrolled chills at times. A nurse friend of ours told me to get checked for thyroid concerns. I did and have been on Synthroid ever since,

Oh yeah - this is another big one - I am super sensitive to cold. Some nights I will start shivering and it's because I get cold in my core (like, instead of feeling cold on my skin that sinks inward, I feel like I'm cold on the inside and it's radiating outward, if that makes sense). I'm sure it's related to low metabolic function, which is another lovely symptom of this disease, but I'm not ready to pay the $$ for a metabolic function test.

The hair loss happened for me too, but it wasn't losing hair at the root - my hair was just really brittle and broke off easily. Dietary changes and biotin helped, I also use an unflavored collagen powder in my morning coffee and that has helped with the hair and some of the joint pain issues. Totally anecdotal but so far it seems to work for me!

 

[NMBCFangirl]

What has everyone done for their hair? Mine is thin and frizzy! I hate it. If this disease is going to make me gain weight, at least let me have nice hair!

I learned to love having a flapper bob haircut and this is another instance where making sure I get enough vitamins helps. Also, rather than using a damaging product on already frizzy hair, I started using a leave in oil treatment. Helps a LOT for me.

 

[nancipants]

I was diagnosed as an infant and have been taking medication my entire life, so I honestly can't say what symptoms I have. When my levels need to be adjusted I get tired or conversely, unable to sleep. I've been lucky that I really don't have to do anything other than take a pill every morning, even while pregnant.

 

[Christine]

Diagnosed with Hashimotos Hypothyroid 11 years ago, though after reviewing my medical records we figured out I was probably symptomatic for at least 6 or 7 years before that.



I do not have an issue converting T4 into T3, so taking Synthroid is *generally* enough for me in terms of keeping my TSH low. But I do get adrenal fatigue and also have an issue absorbing vitamin D so about twice a year I have to go on a super high dose of D for a week. Folks who have T3 issues sometimes do better on natural thyroid replacement, but for me anything that was T3 focused made me feel WORSE.

Your post reminded me of my own experience with T3. Back in the old days, part of thyroid cancer treatment was to go completely off meds before a scan. My TSH would get up to about 150 prior to a scan. I was like the walking dead. They'd let me take T3 for a few weeks through that and since it is so short-acting, they'd take me off about 10 days prior to the scan. I felt pretty good on it, but remember, I was at rock bottom.

Over the years, I read all that good stuff about T3 and thought maybe I needed it. I was always dragging, but I worked full time, had two young kids, heavy periods, and so on. So I did a trial with T3, all different doses. OMG, I felt awful. I couldn't believe it. Horrible. I think you're one of the few people who mentioned that same experience.

Additionally, I didn't quote it here, but the cold shivers. I used to get that often (and all my thyroid numbers were great). I ended up figuring it out it was due to my heavy periods. I wasn't clinically anemic but I had extremely low ferritin. Once I hit menopause and my periods stopped, I've never had another cold spell. It's wonderful.

 

[Imzadi]

Thank you everyone for all of the replies, it has helped immensely! Yesterday was one of those horrible days where I felt like everything was too much to handle and had absolutely no energy. Self pity party I guess, lol. But it helps to know that you aren't alone.

The pity party and the depression is one of the thyroid symptoms. Make sure you have your Vit D levels checked as well as iron. Deficiency of all 3 factors contributes to depression.

But be careful not to take Vit D or Calcium or Iron within 3 hours of taking your thyroid meds.

I wish you well on your journey it will go up and down and never ends. Just make sure you take your pills the same time everyday 30 min before food or 2 hours after. I changed to taking mine at night and it has also helped me not feel so sleepy during the day.

Yes, that's when I found taking my pills & supplements spread out really made a difference. Not only did it spread out how much I was taking all at once so that I was getting heart arrhythmia, it meant I was giving myself mini doses of new energy as my body needed it.

 

[Imzadi]

My hair went from stick straight to frizzy. I call it Hermione Granger hair. I now out it in a pony tail after washing, with a second elastic halfway down the tail. I let it naturally dry that way. It keeps the hair straighter so I don't have to try to straighten it and have my now brittle hair break off or more fall out.

The constant hair loss is the worst. I just try not to touch it as much as possible, because every time I do more hair seems to come off. It would probably do that anyway, but I just try to just use a wide tooth comb and only minimally comb when needed. A pony tail really helps. No styles that need constant combing, fussing, straightening, a curling iron, etc.

 

[lovemygoofy]

Ladies, do any of you see reproductive endocrinologist? You all have given me lot to think about and talk about with my gyno and my PCP.
I am having lot of suffering between stage 4 endometriosis (after 5 surgeries and hysterectomy) and just overall feeling awful. I also have hypothyroid but think this can be much deeper and I'd like to see someone that can take care of both sides and not add in another specialist that won't talk with each other.

 

[Imzadi]

Then there's COVID hair!

I started loosing gobs of hair in my hand about 3 weeks ago. Not just a few loose strands. Like 12 hairs came off in my hand at once. Like whenever you've seem movies where a cancer patient started to lose her hair.

At my routine thyroid visit with my doctor, I mentioned it. Other than seeing a dermatologist, he wasn't very helpful.

Then 2 days after, Alyssa Milano did a blurb on how she has COVID hair. She combed her hair and a hand full came out in her brush. She actually had COVID though. And this is one of her ongoing symptoms.

Yet, Dr. Jen Ashton on ABC News and other medical experts, said that just the extreme stress and anxiety of going through the COVID crisis can also make hair fall out like that, only it doesn't start until about 3-4 months after a stressful event.

I never had COVID, but as we were heading toward the apex here and I HAD to keep going to the supermarket every week to stock up, as the supermarkets just didn't have enough supplies to stock up in one trip, each visit did scare and stress me out. This was before the mask mandate, and the numbers here were jumping up at an alarming rate, so each visit to the store meant there was exponentially more and more people who have COVID that I could bump into.

That was 4 months ago. So, it fits the timeline. Now I wonder if any of it will ever grow back. And how much more handfuls will I keep losing?

 

[Imzadi]

Ladies, do any of you see reproductive endocrinologist? You all have given me lot to think about and talk about with my gyno and my PCP.
I am having lot of suffering between stage 4 endometriosis (after 5 surgeries and hysterectomy) and just overall feeling awful. I also have hypothyroid but think this can be much deeper and I'd like to see someone that can take care of both sides and not add in another specialist that won't talk with each other.

Tina, look into seeing a naturopath or an integrative doctor. I have endometriosis and a cyst on one of my ovaries. I had my Aunt Flo visit for 3 weeks at a time, with super heavy flow. I had to had a waterproof sheet on the bed as there would always be an accident, unless I woke up halfway through the night to change the super, extra heavy flow, overnight pads I had on. I would wear two, where the ends overlapped, so any way I turned in the night, I wouldn't get leakage. (Sorry for the TMO, but I'm illustrating it was that bad.) It also caused the extreme anemia I had from all the constant blood loss. That also causes exhaustion & depression. And extreme feeling cold all the time. I also have cystic breasts that kept getting lumpy and would later go away. I knew I was in perio-menopause.

MY GYN recommended I get a fibroid embolization, but I could barely get out of bed, so that was put off on the back burner.

I did some research and found out how the thyroid and the reproductive system is all tied together. Our bodies really are one big machine where one system affects the other.

When I finally found my right thyroid doctor who is a naturopath or an integrative doctor, on my first visit, he asked me if I was still having period symptoms with my huge Aunt Flo. I thought, what a strange question to ask? Of course, I was, I was having a 3 week "period."

Yet, when he put me on the right meds for me, my "period" stopped about 6 weeks later. Completely. Done. Over. Never came back. Suddenly the question my thyroid doctor asked made sense. He was wondering if I was already in menopause, but didn't know it. Several weeks after that, when he kept increasing my meds, the constant cysts in the breasts are gone.

I've been following your journey, Tina. I really, really, hope you get healed.

There is a book called, Stop The Thyroid Madness. The author also has a website. And she used to have an online group. It may have gotten switched to Facebook.

https://www.amazon.com/Stop-Thyroid-Madness-Revolution-Treatment/dp/0615477127/

I was able to attend a seminar with Mary Shomon. That's where my, now doctor, also spoke as he lives here. Mary also has books about how integrative everything in our bodies are:

https://www.mary-shomon.com/mary-shomon

 

[Dan Murphy]

Oh yeah - this is another big one - I am super sensitive to cold. Some nights I will start shivering and it's because I get cold in my core (like, instead of feeling cold on my skin that sinks inward, I feel like I'm cold on the inside and it's radiating outward, if that makes sense).

I used to wake up in the middle of the night, uncontrolled shivering, big time. I would have to go take a shower, as hot as I could take it, middle of the night. Also drinking in the hot water to warm my core inside. No problems after proper medication.