I was just diagnosed with Hashimotos disease :'-(

posted 2 years ago in Emotional
Post # 16
Member
680 posts
Busy bee

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appleblossom217 :  I am sorry about your diagnosis. That’s tough. I recently read an article about the woman who is in the Guardians of the Galaxy movies. She was diagnosed with Hashimotos, went to a top thyroid doctor, and he said a lot of thyroid problems can be controlled with a proper diet. It seems like when it comes to autoimmune diseases, diet changes can make a huge difference. Also, speaking from my experience with thyroid issues, I would consider cutting soy out of your diet and see if that helps. Good luck. It’s hard, but you’ll get through it!

Post # 17
Member
220 posts
Helper bee

I was diagnosed 3.5 years ago. It can be a lot scarier at first than it is in reality. It can take a bit to get symptoms wrangled, especially if you don’t have a good Endo. I saw 3 different doctors before I chose one who chooses to treat me based on what he hears me describe for symptoms and not just TSH levels. Most common symptom has been poor circulation to my fingers (Raynauds) which I’ve had for 12 years.

 

Now, my life is totally normal. I take a small pill every morning and that’s that. Thyroid cancer has never come up with my doctor – I don’t think they know enough to say for sure whether hashimotos causes cancer or if it’s the other way around. But thyroid cancer is also super treatable. As with any auto immune patient, you do have an increased risk for developing more than one auto immune disease in your lifetime.

I go to the doctor every 6-12 months unless I feel lousy or have inflammation. For pregnancy, you need to make sure your blood work is level, which may mean changing your dosage of meds. Again, not a big deal. My doctor said I can basically call him 3 weeks before I think I might TTC, he will order labs and then bump my meds immediately if needed to support a healthy pregnancy. I scared myself with tons of research at the beginning, but I’m here to tell you I’ve only had one bad day in 3.5 years and I’m not letting it worry me or define my future!

Post # 20
Member
74 posts
Worker bee
  • Wedding: October 2017

Sorry for your diagnosis, but it is common and treatable! I am a physician and I have it as well. The hardest part for me was before I was diagnosed and before I got started on levothyroxine. Before diagnosis I was having periods where I got super sleepy, sad, gained weight, and lost hair. I would literally have to sleep in between classes. I was intially told to take ibuprofen regularly for about a year, with fluctuating TSH/T4 levels, but then by luck went to a good endrocrinologist. That only happened because my PCP was not comfortable managing and she referred me. I was started on levothyroxine and it helped soooo much. My doctor says that regulating levels can help inflammation.There are arguments in medical community about when to start, some people say only if TSH is high and T4 low. However, I got started on T4 supplemntation (levothyroxine) to make sure I had a consistent level in my body. Changing my diet has also helped. I have never been diagnosed with gluten intolerance/Celiac’s but eating a cleaner diet improved well being. 

Post # 21
Member
5214 posts
Bee Keeper

I don’t have it but they thought my thyroid was out of whack, I had all the classic symptoms. Still a mystery what was wrong. Anyhow. The only advice I can give is don’t let them get away with only testing tsh. You need a full thyroid panel then they can get your meds right. T3, T4, Reverse T3, and Reverse T4. There’s more but that’s off the top my of head. I had it tested four times and each time they added more tests. 

A friend of mine has thyroid issues. It’s a pain but the medication helps her feel better. I hope you are feeling better soon! 

Post # 22
Member
925 posts
Busy bee

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appleblossom217 :  i hope he is supportive. Have to educate them on what it is though the disorder is so common but so hidden. 

Initially I joined an online community for thyroid issues but I got seriously freaked out when I saw them recommending self-medication and they can be unappreciative that it takes a longer time than expected to adjust the meds. Everyone is different. It’s important to find a doctor who understands you and your disorder, and willing to listen to your symptoms.

I like my pasta, bread and cakes a lot.. so I don’t go gluten-free, but I realize my body has preference for rice which is non-gluten starch. Fresh soy products might be not great but fermented soy products are ok. So soy sauce is fine. Tofu.. once a while. Fermented bean paste is ok.

It’ll all be fine.

Post # 23
Member
1430 posts
Bumble bee
  • Wedding: November 2016

I was diagnosed with Hashimotos this year too. I was sad I’d have to take medication for the rest of my life by so relieved I had answers. My hair was falling out, my skin was dry and bleeding, I had such terrible insomnia at the start of this year that I’d considered killing my self. I was utterly miserable. I went to my doctor about the insomnia and got some blood tests which was when they discovered the Hashimotos.

I am still learning so I don’t really have much advice but now I’m on medication I’ve never felt better honestly. My hair is still thin (but I think maybe that’s just me having naturally thin hair too!) I’ve never slept better. My crippling anxiety is also getting better. I didn’t realise how bad I felt till I started getting treated for this.

It does suck but you will start to feel better. There are a couple of FB groups I’m in (for hypothyroidism but I’m sure there’s Hashimotos ones too) which I’ve got a lot of info from.

I noticed you mentioned cancer. It seems so rare. I have an enlarged thyroid and freaked out about it, it has little lumps around it. My doctor sent me for an ultrasound and all was normal, it’s just a bit enlarged which is common with Hashimotos and it has some what I think he called reactive lymphcites (so?) around it. The doctor who did the ultrasound said the chances of getting cancer is low.

Feel free to PM me! Everything will be fine! Hugs!

Post # 24
Member
1430 posts
Bumble bee
  • Wedding: November 2016

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cindyckx :  I noticed the self medication thing too! I’m a doctor’s wife so that doesn’t sit well with me lol. I stick around in the groups because they do have some decent info and advice though you just have to be careful.

Post # 25
Member
925 posts
Busy bee

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KellyB262 :  yeah.. the one im on sometimes gets aggressive if we suggest one should listen to their doctors and not self-medicate. But I’ve to admit that there are many doctors who don’t listen. Those who are doing fine with their meds usually just continue living their lives as it is, just the ones struggling are more likely to complain… That’s what I noticed. We should start a Hashimoto’s/subclinical hypothyroidism group…

Post # 26
Member
642 posts
Busy bee
  • Wedding: November 2017

appleblossom217 : I recently heard a podcast about this illness. I’ve linked it. I don’t know if this will help but it’s good to have well-rounded information from many sources when dealing with a chronic illness. Link got deleted. Look up: Episode 361 – Dr. Izabella Wentz – Hashimoto’s

Post # 27
Member
335 posts
Helper bee
  • Wedding: August 2015

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appleblossom217 :  I’d caution against doing a huge diet shift all at once.  Though things like a gluten free diet help some people with hypothyroid, others are not affected at all – and why commit to something that huge (and expensive!) if it doesn’t really help?

Instead, try an elimination diet (if you lookup FODMAP elimination diet, you can find tons of free resources for how to do it), and then see what you can add back most productively.  That might give you a list of foods to eat/not eat that’s a lot more sustainable in the long term.

I’m subclinical, but on 75mcg of sythroid a day while pregnant.  My endocrinologist was fabulously agressive about testing and adjusting my meds all the way through first trimester, with regular check ins now. If you’ve got a doctor you trust and can work with, that is half the battle.

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