Hashimoto's/Hypothyroidism

[ILoveMyDVC]

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!

It was my hair that led to my final diagnosis. I take Biotin, too. HYPER and you will lose hair, HYPO and it will be dull and frizzy. Strive for balance. But at the cancer level, they will keep one at hyper to keep the cancer at bay - I lost 2/3 of my once voluminous hair that was part of my identity.

 

[mckennarose]

I have Hashi's and had my thyroid removed 10 years ago due to the Hashi's having destroyed it. We don't know how long I had it before it was diagnosed, but due to the fact that my entire left lobe was destroyed, they knew it was for quite a while. My Hashi's was diagnosed by both antibodies and the final pathology report after it was removed.

I am on NatureThroid, which is similar to Armour, and have been on natural desiccated thyroid for more than 10 years. Synthroid was horrible for me and I need the T3 in NatureThroid. Armour was great for me before the reformulation a few years ago, and the price got too high so I switched to NT and have been fine on it for a few years now.

The key for me, and what I would recommend to anyone, is to not only get TSH run as it's a pituitary hormone, not your actual thyroid hormone level. The actual thyroid hormone levels, and what tell you what your thyroid is actually producing, are Free T3 and Free T4. My TSH is always suppressed but my actual hormone levels are within range. They think it's probably due to not having a thyroid and I'm missing party of that HTP feedback loop, and natural desiccated thyroid can suppress your TSH. I split my dose into two during the day so I'm not slammed with the T3 all at once, and it mimics more the natural cycle of thyroid hormone release.

I can lose hair when my thyroid levels fluctuate, not due to being hyper or hypo. I also do have other AI diseases, so that plays a part and it's sometimes hard to figure out which disease is rearing it's head.

Good luck to you! Autoimmune disease is no fun and the beginning of your journey can be difficult, but you will find a way through. It's a process that takes some getting used to. Right now I'm having some issues with my other AI diseases and trying to figure out which one is acting up.

 

[nancipants]

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.

I did, but it was for infertility issues.

 

[LovesTimone]

I have been taking Thyroid med's for just over a year now... I had all the symptoms of my thyroid not working properly, yet when they tested, I was always in range... and the doc. kept telling me it was all in my head, and just menopause... so I got a new Doctor, someone who listened to me... and spends time with me when I go, ask questions and really listen to what I am saying, we have a relationship... My DH see her too... We both love her...

She said, "some of it could be menopause, but I don't really don't think so"...as well with both your parents and brother having Thyroid issues, So she said lets try the lowest dose and see, if you get out of range we will know it's not your thyroid... and start looking in another direction.

So monthly for 3 month I went for blood work and never did it get out of range... She said what I have is like a lazy thyroid, and it works intermittently, she said you definitely have something going on with your thyroid, if is was working properly you would have known it right away, and it would have showed in the labs. ... so I have been on just over a year, and it has worked wonders for me... my hair started thickening up within weeks, and I had baby hairs sticking up everywhere, as well problems I have had my whole life, like with super dry skin, being cold for no reason and constipation just fade away and my energy level has increased sooo much...

She did suggest a vitamin, she said it really did not matter as long as it has good absorption into the body, and to take it at night...and if I miss a night or two... I can tell it right away..

As well see sent me to see a therapeutic massage therapist, and she has gotten the kinks out, stretch out my muscles, and given me stretching exercise as well as I a therapy ball to sit on to help strengthen my core... and now I am moving so much better with out any pain... and when you can move without pain you are more willing to exercise. I was skeptical at first, when my Doc. said this is who I see.. I was okay I will give it a try... I see her monthly, I can not tell you how she has changed my life...

Then we discuss my diet... she put me on an intermittent fasting, and low carb diet... and I lost size right away, and now I am seeing it on the scale in pounds.. and because I am eating this way work great for how my body process everything... I feel even better, more energy all around.

She really listens to what I am saying... and ask lots and lots of questions... she took everything into consideration, what was happening to me, how I was feeling, family history, and my overall health at the time. She said you have to look past what the labs work shows... between my Doc, and the Massage therapist... they have given me my old life back, I feel like myself...

It has been a journey for sure... She said everything in your body is connected in some way, and when something isn't working properly, it cause a chain reaction in the rest of the body... as well you have to want to put in the work, to get where you want to go... We tired different things and now I have the right combination that works for me...

Whatever you do keep trying, if one doctor isn't helping you, its okay to find another doctor... Don't give up...

 

[siren0119]

I have been taking Thyroid med's for just over a year now... I had all the symptoms of my thyroid not working properly, yet when they tested, I was always in range... and the doc. kept telling me it was all in my head, and just menopause... so I got a new Doctor, someone who listened to me... and spends time with me when I go, ask questions and really listen to what I am saying, we have a relationship... My DH see her too... We both love her...

She said, "some of it could be menopause, but I don't really don't think so"...as well with both your parents and brother having Thyroid issues, So she said lets try the lowest dose and see, if you get out of range we will know it's not your thyroid... and start looking in another direction.

So monthly for 3 month I went for blood work and never did it get out of range... She said what I have is like a lazy thyroid, and it works intermittently, she said you definitely have something going on with your thyroid, if is was working properly you would have known it right away, and it would have showed in the labs. ... so I have been on just over a year, and it has worked wonders for me... my hair started thickening up within weeks, and I had baby hairs sticking up everywhere, as well problems I have had my whole life, like with super dry skin, being cold for no reason and constipation just fade away and my energy level has increased sooo much...

She did suggest a vitamin, she said it really did not matter as long as it has good absorption into the body, and to take it at night...and if I miss a night or two... I can tell it right away..

As well see sent me to see a therapeutic massage therapist, and she has gotten the kinks out, stretch out my muscles, and given me stretching exercise as well as I a therapy ball to sit on to help strengthen my core... and now I am moving so much better with out any pain... and when you can move without pain you are more willing to exercise. I was skeptical at first, when my Doc. said this is who I see.. I was okay I will give it a try... I see her monthly, I can not tell you how she has changed my life...

Then we discuss my diet... she put me on an intermittent fasting, and low carb diet... and I lost size right away, and now I am seeing it on the scale in pounds.. and because I am eating this way work great for how my body process everything... I feel even better, more energy all around.

She really listens to what I am saying... and ask lots and lots of questions... she took everything into consideration, what was happening to me, how I was feeling, family history, and my overall health at the time. She said you have to look past what the labs work shows... between my Doc, and the Massage therapist... they have given me my old life back, I feel like myself...

It has been a journey for sure... She said everything in your body is connected in some way, and when something isn't working properly, it cause a chain reaction in the rest of the body... as well you have to want to put in the work, to get where you want to go... We tired different things and now I have the right combination that works for me...

Whatever you do keep trying, if one doctor isn't helping you, its okay to find another doctor... Don't give up...

That's a fantastic doctor! Hold onto her!

 

[disneychrista]

Does anyone have being really thirsty all the time as a symptom? That and change in bowel habits from daily diarrhea to slight constipation are the only new symptoms for me. Both are really new and only started in the past 10 days. I have other symptoms of low thyroid but I’ve had some of them for years and my thyroid numbers were within range last year.

 

[siren0119]

Does anyone have being really thirsty all the time as a symptom? That and change in bowel habits from daily diarrhea to slight constipation are the only new symptoms for me. Both are really new and only started in the past 10 days. I have other symptoms of low thyroid but I’ve had some of them for years and my thyroid numbers were within range last year.

Yep digestive issues are very common and can take many forms. IBS, constipation, stomach pains, irregular BMs, you name it.

As far as the idea of numbers being "within range" - this is where things get tricky and why I was undiagnosed for so long.

The "range" for normal with TSH is really wide. But an individual person's THERAPEUTIC normal is narrow. So imagine that the range of normal is the George Washington bridge, and one person's therapeutic range is a truck parked on the bridge. It's dark, and all the vehicles on the bridge are parked with their lights off. If you don't know where that truck is parked, finding it is going to be tough. Likewise, if you don't know what your range of "normal" TSH is, finding it can be tough - but if you're still symptomatic that likely means that whatever your test result is now, it isn't where you should be.

This is part of why testing other factors (T3 and T4) can help uncover an issue that just the TSH test won't show. It's also why finding a doctor that listens to how you FEEL and not just what the labs say is SO important.

 

[disneychrista]

Yep digestive issues are very common and can take many forms. IBS, constipation, stomach pains, irregular BMs, you name it.

It's also why finding a doctor that listens to how you FEEL and not just what the labs say is SO important.

I went to the doctor this week because of digestive issues. I was diagnosed with functional diarrhea about 6 years ago and wanted to get back on medication. It had gotten progressively worse over the past 6 months. The doctor (NP) listen and wasn’t judgey. I didn’t even mention the other symptoms because they are “normal” for me. I really wasn’t expecting the hypothyroid diagnosis. But I am really hoping that being on the medication will improve things that I’d just learned to live with.

 

[smilie]

What about lymph nodes? The one on the left side of my neck gets swollen and painful. It's like it comes and goes. Some times worse than others. It's the one that got rather large and how I was diagnosed to begin with. I had an ultrasound on it and nothing alarming showed up. I just don't know if this is a side effect from hashis/hypo that I just have to deal with.

 

[Southernmiss]

What about lymph nodes? The one on the left side of my neck gets swollen and painful. It's like it comes and goes. Some times worse than others. It's the one that got rather large and how I was diagnosed to begin with. I had an ultrasound on it and nothing alarming showed up. I just don't know if this is a side effect from hashis/hypo that I just have to deal with.

Sometimes lymph nodes never really go down.

My daughter was diagnosed with systemic lupus last year. One her first symptoms was enlarged lymph nodes behind her ears. They are still enlarged and 2 different doctors have said that they may never fully go down.

I have not had enlarged lymph nodes with thyroid, myself.

 

[ILoveMyDVC]

I have Hashi's and had my thyroid removed 10 years ago due to the Hashi's having destroyed it. We don't know how long I had it before it was diagnosed, but due to the fact that my entire left lobe was destroyed, they knew it was for quite a while. My Hashi's was diagnosed by both antibodies and the final pathology report after it was removed.

I am on NatureThroid, which is similar to Armour, and have been on natural desiccated thyroid for more than 10 years. Synthroid was horrible for me and I need the T3 in NatureThroid. Armour was great for me before the reformulation a few years ago, and the price got too high so I switched to NT and have been fine on it for a few years now.

The key for me, and what I would recommend to anyone, is to not only get TSH run as it's a pituitary hormone, not your actual thyroid hormone level. The actual thyroid hormone levels, and what tell you what your thyroid is actually producing, are Free T3 and Free T4. My TSH is always suppressed but my actual hormone levels are within range. They think it's probably due to not having a thyroid and I'm missing party of that HTP feedback loop, and natural desiccated thyroid can suppress your TSH. I split my dose into two during the day so I'm not slammed with the T3 all at once, and it mimics more the natural cycle of thyroid hormone release.

I can lose hair when my thyroid levels fluctuate, not due to being hyper or hypo. I also do have other AI diseases, so that plays a part and it's sometimes hard to figure out which disease is rearing it's head.

Good luck to you! Autoimmune disease is no fun and the beginning of your journey can be difficult, but you will find a way through. It's a process that takes some getting used to. Right now I'm having some issues with my other AI diseases and trying to figure out which one is acting up.

I had a few rounds of Alopecia under stress - HATED that but responded well to the shots. What other AI diseases have you had to battle?

 

[mckennarose]

What other AI diseases have you had to battle?

I had bouts of Alopecia as a child, which should've been my first clue. Thankfully any hair loss I have now is minimal.

A few in the Mixed Connective Tissue Disease camp. My antibodies and symptoms fluctuate depending on what's flaring.

I think the only things tested on my bloodwork were antibodies (to confirm Hashi's), TSH & T4. I'll have to ask her why she didn't include the T3.

I just went back and read your post. Take this with a grain of salt as I'm not a medical professional nor am I telling you what to do medically. This is my opinion and what I've been told/learned. The Hashi's antibodies are anti-TPO and TgAb. Other important thyroid tests are TSI and TRAB, which are common for Grave's. Free T3 is one of the most important thyroid levels to check because it's the available thyroid hormone for your body to use. Free T4 is more of a "storage" hormone, with the theory that it converts to Free T3, but that some people have found to not be true for them, myself included.

Re: the TSH talk.... my doctors (and my personal opinion) is that TSH should never be used to dose thryoid meds. Because it's a pituitary hormone, it's job is to "yell" at the thyroid to either produce more hormone, or go quiet when there's enough or too much.
High TSH= Pituitary is yelling at your thyroid to make more hormone because it's sluggish or not producing enough.
Normal TSH= No need to yell at the thyroid right now.
Low TSH= Thyroid is producing too much hormone, so pituitary goes really quiet.
It can be useful as part of the whole thyroid panel to help diagnose thyroid issues, but not to dose meds. It's unfortunate that some doctors only run TSH and then use it to dose patients.

The Free T's (Free T3 and Free T4) give a better picture as to what your thyroid is doing, or in my case, how my medication is doing since I don't have a thyroid. They are the actual amount of thyroid hormones your body is producing. And it needs to be the Free's... not total or plain T3 or T4. Free T's are the unbound hormones that your body can use. I don't remember the whole medical definition or reason why, but regular T3 and T4 are definitely not the same as the Free's and don't give an accurate picture. There's also Reverse T3, but I don't have an issue with that so I don't keep up with the latest info. Most people feel well when the Free's are at the mid to higher end of the range, and ranges vary by labs.

Someone mentioned Mary Shomon and Stop The Thyroid Madness and I absolutely second those recommendations. So much useful information there.

Again, JMO and personal experience here and you need to do what you feel is right and what works for you. YMMV.

 

[ILoveMyDVC]

Hey - Has anyone had any experience with what Hashi or Thyroid cancer means for COVID and the vaccine?

 

[princesscinderella]

Hey - Has anyone had any experience with what Hashi or Thyroid cancer means for COVID and the vaccine?

I have hashimotos and had both doses of the Pfizer vaccine with my final dose on Jan 21st. I don’t feel like it has adversely affected my health I feel like it would have been worse to get COVID. I have a severe gluten intolerance and I encourage all of you with hashimotos to try a gluten free diet if you are still feeling fatigued and brain fog, it’s very inflammatory. I also have an issue with nightshades too (tomatoes, potatoes, eggplant, peppers).

 

[bennifer]

I don’t know how I missed this conversation in August, but holy cow. I was diagnosed with hypothyroidism 11 yrs ago, put on Synthroid, and actually my dr and I haven’t discussed it very much since then. About 5 years ago I had ankle surgery, and ever since then I have felt so fatigued, a not quite numbness/not quite pins and needles feeling in my legs, I have long and heavy periods, digestive issues, my chronic migraines have gotten worse, and my hair is the frizziest it’s ever been. I never thought about the thyroid (neither did my dr). Thank you all of you! I’ll be calling my dr tomorrow!

 

[HeatherC]

I have had thyroid disease since I was 24. I am now 55 and have been on Levothyroxine since being diagnosed.

My advice to anyone with this is to see an endocrinologist not your regular doctor for treatment. This makes a huge difference because they look at the bloodwork and lab numbers in a different way than a regular physician who just checks to see if your “aim normal range”. Just because someone is in “normal range” doesn’t mean they all feel great. There is a huge range and an endocrinologist will work to get your numbers where you feel the best. They will also run a complete panel which your regular physician is not as inclined to do. Most rely on TSH levels whereas there is

The other piece of advice I would give is to make sure to take your meds exactly as prescribed. Mine are supposed to be taken same time every day on an empty stomach. That makes a big difference in how they get absorbed.

Hope this helps someone.

 

[slo]

Has anyone been diagnosed with Hashimoto's or hypothyroidism? I was recently diagnosed with both and having a hard time with the symptoms. There are some mornings where just getting out of bed to take a shower is the hardest thing to do. Anyone who has either of these and some tips, I'd gladly welcome what you have to say!

I have no suggestions, but I just wanted to send well wishes your way and I hope you feel better soon.

 

[ILoveMyDVC]

I have hashimotos and had both doses of the Pfizer vaccine with my final dose on Jan 21st. I don’t feel like it has adversely affected my health I feel like it would have been worse to get COVID. I have a severe gluten intolerance and I encourage all of you with hashimotos to try a gluten free diet if you are still feeling fatigued and brain fog, it’s very inflammatory. I also have an issue with nightshades too (tomatoes, potatoes, eggplant, peppers).

I have no hesitation to get the vaccination. I was wondering if we qualify for the earlier list...

My state is rock bottom for getting out the vaccines. We chose to give them to people at end of life first (comatose, non ambulatory, life support, etc) and healthcare (yay) but also wealthy connected Board Members of hospitals. We are projected to finish the over 75s at the end of April...and our new unexpected Governor wants to give them to teachers without guaranteeing they will go back to the classroom in the fall but ensuring votes when he faces an election. No idea when those of us in other age groups will see a vaccination.

Gluten intolerance - was tested - GI bet me I would have one - I had zero indicators under the scope.

 

[ILoveMyDVC]

I don’t know how I missed this conversation in August, but holy cow. I was diagnosed with hypothyroidism 11 yrs ago, put on Synthroid, and actually my dr and I haven’t discussed it very much since then. About 5 years ago I had ankle surgery, and ever since then I have felt so fatigued, a not quite numbness/not quite pins and needles feeling in my legs, I have long and heavy periods, digestive issues, my chronic migraines have gotten worse, and my hair is the frizziest it’s ever been. I never thought about the thyroid (neither did my dr). Thank you all of you! I’ll be calling my dr tomorrow!

Synthroid never worked for me. Cancer patient. No thyroid. Had to go the Armour route. Never looked back.

 

[lisaviolet]

Have you had a thyroid ultrasound to check for nodules?

Does having nodules produce any thyroid symptoms, in your opinion? I was told no by my doctor. I have five, and two are relatively large.
.
All my thyroid numbers are normal, despite feeling so off. My antibodies were high but are back in the normal range now.