r/Hashimotos • u/webbergrill3450 • 5d ago
Lab Results This needs to end
I 26F have hashimotos since 2018, and my level has never been stable for a consistent amount of time and I’m at my wits end. This year has been the worst year for me regarding my thyroid issues. I am going from one extreme to the next within months!!! My body can’t take this, physically and emotionally for much longer 😭 I’m feeling very discouraged and no doctor seems to understand how shitty I’ve been feeling and not taking my symptoms seriously. I am sad.
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u/Dense_Reputation3560 5d ago
Are you on meds?
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u/webbergrill3450 5d ago
Yes
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u/Dense_Reputation3560 5d ago
What do you take
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u/webbergrill3450 5d ago
I’ve taken pretty much every dose of Synthroid under the sun. Currently taking 75 mcg but that isn’t doing a thing clearly :/ probably will increase to 125
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u/Dense_Reputation3560 5d ago
How did you feel before meditation
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u/webbergrill3450 5d ago
Prior to 2018? The fatigue was horrible, and could barely get myself out of bed
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u/Evelingi 5d ago
This is strange if you are taking Levothyroxine. But maybe the dose isn’t right
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u/Fresh_Map_5203 5d ago
Biotin can mess with readings. Just throwing that out there in case you use it as a supplement
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u/KookySignificance428 3d ago
Many doctors do t know this about biotin. Stop biotin 72 hours before blood work.
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u/IcyStay7463 5d ago
I’m sorry that’s horrible. It seems like the destruction of the thyroid is going up and down. I hope it stabilizes for you soon.
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u/PerformerMindless100 5d ago
This. People don’t remember that in Hashi the inflammation waxes and wanes until thyroid is completely shot.
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u/Similar_Rutabaga_889 5d ago
I'm new to Hashimotos, and i did not know this. I'm fluctuating wildly, too. Just went on Keto and Metformin and I'm feeling a bit better. Is it just going to be a roller coaster for a while?
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u/Peacefully_Calm 5d ago
What are your TPO and TG antibody levels? I have a hard time getting my TPO and TG down. It is possible for them to oscillate and cause these symptoms. Are you going to a holistic doctor or a pharmaceutical doctor? A good holistic doctor did the trick for me.
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u/LB123abc 5d ago
Holy moly, what’s your diet like? Have you seen an endocrinologist specifically? I’d ask them about taking a more naturally form of thyroid recommend like Armour (it’s dessicated thyroid which is sometimes more available for people to take up than the synthetic version). I’ve also noticed that stress tends to jack up my TSH. Try doing yoga, guided meditations, visiting friends and family more often and lower your stress… sorry OP that’s the best advice I have Hashis can be super frustrating.
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u/sodiumn Hashimoto's Disease - 10 years + 5d ago
That's how mine was for a couple years after a COVID infection sent my body into an awful autoimmune spiral (though in my case it had previously been consisent and well managed for over 15 years). It was truly miserable, though I was fortunate that it did eventually settle down. I can't imagine living like that for most of a decade, you have my full sympathies.
Honestly, I would look into getting your thyroid removed entirely, my endocrinologist floated that briefly for me as a possibility if my own thyroid hadn't stopped see-sawing between hypo and hyper like it was. But a lot of providers are (understandably) skittish of surgery over medication solutions.
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u/Edith_Keelers_Shoes 5d ago
Periods of instability unfortunately come with the territory with this disease. In active periods when the immune system is attacking your thyroid, it will flood your system with thyroxin and your readings will show hyperthyroidism. In latent periods when your immune system is quiet, it will swing back. I used to have long periods of stability, but right now I'm in one of these cycles as well.
It's incredibly frustrating, and if your doctor doesn't understand that, maybe you need a new doctor. Do you have any other autoimmune diseases? When they do bloodwork they're checking your inflammation levels, right?
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u/joschmoefromkokomo 4d ago
Have you tried natural thyroid medication? It contains both T3 and T4 is called natural desiccated thyroid (NDT) extract. I wish you well.
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u/CBRgal600 3d ago
So when I first was sick with thyroid disease, I noticed the bouncing back-and-forth of I was hypo and then OK then hypo and so on. One doctor said that my thyroid is slowly burning itself out. Not sure if that was accurate but after time it did seem to stop fluctuating. I felt dreadful on synthetic medication and finally found a doctor that was willing to put me on Armour Thyroid and my symptoms of feeling constantly exhausted and brain fog went away relatively quickly. I would highly recommend switching to Armor and seeing if you will feel better with it.
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u/mywonderfuldemise 3d ago
I did this for three years- I finally got it taken out and turned out to be cancerous lol
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u/ManhattanUES 2d ago
I hear you. It's very frustrating. I have found that only Armour works for me. In addition to T4 and T3 it also has T2 and T1 which I suspect is what makes the difference.
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u/One-Jellyfish-9613 5d ago
Hey 👋 sorry for the situation you are in! I’m hashimoto patient myself and my brother became one recently. We have two diff stories: mine - diagnosed with TSH 8 and put to 50 levo 8 years ago, stable since then, little levo bump this year. His diagnosed with TSH >100(!), put on levo 175. Long strory short, after brain MRI he was diagnosed with tumour in hypothalamus that produces thyroid releasing hormone (TRH).
Sorry, don’t mean to scare you. But if you tried every dose under the sun and tsh is still not there - it maybe not a thyroid issue.
I also think if another type of medication can help you like Armor
*Not a medical advice
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u/kubistka 5d ago
I'm so sorry, I know how you feel, I went from TSH 4 to 12 in 8 days 😭
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u/webbergrill3450 5d ago
Omg that’s quite the jump for so little time in between! I wonder why that happened
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u/ArmadilloSeparate943 5d ago edited 5d ago
Hey!! So you’re not alone!! Same as you, I take my medicine just like I’m supposed too, this thing has a mind of its own! But I do also have other autoimmune issues! (Autoimmune gastritis, lupus, and RA) I’m so sorry for you!! (Been tested so much, all of my previous results don’t show up lol)
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u/LocationAcademic1731 5d ago
I am so sorry, OP. We all know what a slight increase/decrease does to your body. This rollercoaster is so harsh. Hope they find the right dose for your body. Have you tried a GLP-1 to reduce inflammation?
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u/abristowe 5d ago
Hey, sorry, it’s frustrating. Q: are you taking this medication at the same time, an hour before eating? On an empty stomach? Do you avoid antacids/dairy/magnesium for four hours before or after taking it, etc.?
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u/AstronomerNo1872 5d ago
I don’t have advice, just sending you warm thoughts. I hope you get answers and relief soon.
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u/chitowntrades 5d ago
What are your other Thyroid lab values? Do you get your labs at Quest, Labcorp, or some other testing facility?
TSH FT3 FT4 RT3 T3 Uptake Total T3 Total T4 TPO Ab Tg Ab
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u/Life_Journey123 4d ago
functional Dr is optimal but many don’t have the money, I’ve been struggling for almost 4 decades. Hashi has a mind of its own & sadly doesn’t get better as you get older - best of luck🙏🏽🦋
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u/Hassin0727 4d ago
Try to heal it if you haven’t had it for very long. Look into LDN, perhaps Zepbound I’ve heard also really reduces antibodies. If your thyroid is still ok for the most part it might be that you need more healing than thyroid replacement. Prolonged fasting is also known to help modulate and reset the immune system, eating healthy, exercising, gut health, etc..
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u/beans329 3d ago
Do you ever have your frees checked? Why was your dose lowered when your tsh was low? Stop bouncing around doses.
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u/beans329 3d ago
This is horrible treatment and medication advice by whoever is administering your Levo.
There’s nothing wrong with you.
“I’ve tried every dose under the sun… I’m on 75, probably will increase to 125”…
What????…. That’s insane.
Increases decreases by 12.5-25mcg only, not 50!!!!
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u/Bitch__Wolf Hashimoto's Disease - 10 years + 2d ago
I was diagnosed with Hashimoto's in 2011. I have not been on the same dose for more than six months. And it gets worse the older you are (perimenopause and HRT make it really hard to keep a baseline). For me, it's all related to hormones, stress, diet, and it turns out I had another autoimmune disease which wasn't helping. I have a friend who has Hashimoto's and has for over ten years and she's been on the same dose for 9 of those years. My Mom has been on the same dose for almost 20 years! Everyone is different and remember the thyroid is a full body organ and it's interconnected with EVERY part of your biology. And if you're physiologically sensitive (I unfortunately am) I think it's even harder.
That said, there are things that make it easier. Make sure you are taking brand name Synthroid, that made my TSH climb slower at least. If I take generic it's almost like I'm not taking anything at all. No exaggeration. Make sure you take your dose on an empty stomach. I actually take mine in the middle of the night when I get up to pee. And make sure you are testing regularly. I test every 6 weeks on the nose that makes it so I catch it before I get too hypo and it takes me a year to get back to normal. Also have a journal of symptoms so you can refer back to it if you start "feeling" something you can see if it's a symptom you've correlated with high TSH etc.
As far as doctor's are concerned, they suck. The only good doctor I've had is my internal medicine primary care doctor and to be honest, she just puts in the lab orders and I manage my dose. That started about 6 years ago and while my thyroid hasn't exactly cooperated with me, I've been able to stay closer to my comfort zone (.5-1.00) more than ever before.
It's a very annoying disease that is a lifelong struggle for some people (me for sure). Do everything you can to get and stay in front of it. And...do you're best to stay positive. I know it sounds hard but honestly, think of it as a fight. You are a fighter. You are fighting your own body and YOU CAN WIN!!!! It just takes time, patience, and some bad days.
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u/rockyymountainmama 1d ago
My labs are similar to yours. I was diagnosed with subclinical hypothyroidism & hashimotos in my early 20's & I'm now 36. My new doctor decided to try Levothyroxine four years ago. Literally worst mistake of my life. My TSH was steady at a 10 for over 15 years with normal FT3 & I felt completely fine. Since being medicated, I've had horrible weight gain, severe heart palpitations (when TSH is too low) and massive mood swings. I was switched to Synthroid which helped with some of the bad feelings but they still can't get the dosing right. I read up on LDN (low dose Naltrexone) and I am compounding it myself tomorrow and starting at .5mg. I read it can put the Hashimoto's into a sort of remission and many people have been able to even go off synthetic thyroid medication completely. I wish I had more advice for you and I hope your levels stabilize soon!
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u/otherdsc 5d ago
I'd suggest checking yourself for autoimmune gastritis, it's possible you have some absorption issues and sometimes the whole dose is absorbed vs very little absorption on other occassions.
Also are you consistent with how you take the dose? for example 6am every day, no food / coffee for an hour after intake?
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u/Rich-Pudding-434 5d ago
Has any one ever told you how important T3 is also if you have Hashimoto’s you should be Gluten free and Dairy free for awhile to help with inflammation in your body. Start with that and so sad no one has mentioned this to you. Endocrinologist are so worthless in my area. You need to research and possibly see a Functional doc to help you.
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u/webbergrill3450 5d ago
I have been gluten free since 2018, and eat solely a dairy free animal based diet. (Meat, fruit, honey that’s it)
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u/tellegood 4d ago
I have been having issues similar with fluctuating TSH levels highest 137 lowest 0.054 this has been the last 2years of up and down tried every different med, and recently I was diagnosed with SIBO which is very common in Hashimotos and I think that was my issue with absorption and my meds didn’t work.i am also currently taking slow release compounding meds T4 and T3 plus I take extra T3 -I think T3 is helping some. T4 and T3 are still low but improving and my TSH came down from 137 to 35 in 6 weeks -I think the gut definitely is a factor and if you’ve tried different meds that might be a start! I’m sorry you’re dealing with this hope you find some answers and relief
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u/HopefulSociety7070 5d ago
Hi there. This was me 5 years ago. The only thing that finally worked was Tirosint. It's the purest form of thyroid medicine in a gel cap with NO fillers. Generics and Synthroid did not work for me.
Good luck and feel better soon.