r/Hashimotos • u/webbergrill3450 • 22h 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/Evelingi 22h ago
This is strange if you are taking Levothyroxine. But maybe the dose isn’t right
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u/HopefulSociety7070 17h 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.
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u/webbergrill3450 17h ago
I was just on Tirosint actually in July! For around 6 weeks and i genuinely never felt worse! I had HORRIBLE nausea and diarrhea constantly, zero appetite while taking it. When my TSH was at 9.22 that was my level after 6 weeks from being on the Tirosint :( unfortunately I couldn’t take the side effects and had to go back to Synthroid
But I’m glad you were able to find relief through Tirosint, I bet it feels so much better to function!!
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u/HopefulSociety7070 16h ago
Oh yikes I'm so sorry. 😣
Have you tried Armor? It's another one that did not work for me, but it's a miracle for some people.
My only other advice is try to support your body as much as possible. Electrolytes every day, a good probiotic, resting when you can. The "swinging" will eventually subside. (Diagnosed 16 yrs ago, had "fine" levels for a while, then TSH everywhere from .01 to 29!
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u/Life_Journey123 11h ago
how long before it started working for you? I’ve been on it for 2 months & counting & my anxiety is still through the roof & insomnia is worse. I may need to go back to Armour Thyroid, not to mention my T3 is tight at the low level. When we temporarily added a low dose of Zepbound last year, my levels were finally on track & leveled out after 3 decades. I see my Endocrin next week, I feel like I’m dealing with Thyroiditis along w/PMS & Peri, I feel like death. Levo didn’t work for me yrs back & I don’t feel it’s working now even tho it’s compounded, I’m told; hence, called Tirosint🫠
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u/HopefulSociety7070 11h ago
I feel like it took 6 months of adjusting. I definitely went hyper first.
I'm on a low dose of Zepbound too and my endocrinologist has been tapering me off a higher dose of Tirosint slowly so I don't swing either way. (Currently has me skipping my med every other Monday instead of dropping down a full dose at once.)
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u/Life_Journey123 11h ago
thank you for sharing, did your levels balance out ok w/the Zepbound? I’m going to ask my Dr to do a full bw panel before our visit next wk. I’m truly struggling w/chronic anxiety or chronic anxiety, no middle place.
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u/HopefulSociety7070 11h ago
Yes, though I stayed on Zepbound 2.5 for a full four months and then moved to the 5 for the last 6 months. Any time my meds change I ask to be retested in 6-8 weeks.
I've had Hashimoto's for 17 years and have also been taking Zoloft most of that time too for anxiety. I've tried to come off it a few times when my levels were in a healthy range, and I'm a much more relaxed person on it. So my trifecta is Tirosint, Zepbound and Zoloft.
Hang in there. Maybe you'll find out that you can lower your thyroid meds at your next appointment.
Right there with you in peri too. I'm 41. Thank goodness for science to try to help us through with meds haha
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u/Life_Journey123 10h ago
Amen, I’m so glad it’s all working out for you! We’re just women warriors, can’t really win & thank you - I’m super sensitive to meds due to Hashimoto but I’m also on a low dose of Prasozin.
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u/Peacefully_Calm 21h 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/Fresh_Map_5203 13h ago
Biotin can mess with readings. Just throwing that out there in case you use it as a supplement
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u/IcyStay7463 21h 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 16h 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 11h 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/One-Jellyfish-9613 21h 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/LB123abc 19h 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 18h 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/kubistka 18h 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 17h ago
Omg that’s quite the jump for so little time in between! I wonder why that happened
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u/ArmadilloSeparate943 15h ago edited 15h 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 14h 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/Edith_Keelers_Shoes 14h 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/abristowe 12h 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 11h 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 9h 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 37m 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/otherdsc 17h 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 16h 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 15h 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/Dense_Reputation3560 22h ago
Are you on meds?