SIDE EFFECTS FROM HYPO MEDS

[Fairydancer]

Anyone else out there who’s resistant to all the hypothyroid meds they’ve tried?

Over the last year I’ve tried Synthroid, Synthroid with Cytomel, Erfa, Erfa with Synthroid, and compounded NDT - which is pretty much all we have available to us in Canada.

They all increase my hypo symptoms and give me side effects like tingling tongue, burning throat, sore gums, cracked lips, cracked peeling fingertips, blurry eyesight, tremors under my skin, pins and needle hands and feet, insomnia, terrible fatigue, cold spells (Synthroid), cold spells alternating with hot spells (Erfa, NDT, and Synthroid with Cytomel).

I don’t have any of these symptoms when I’m not taking these meds other than fatigue and occasional cold spells as well as constipation. The only thing the meds help with is taking away my muscle ache and joint pain. They also help with constipation.

I’ve tried taking different doasages and experimented with the times day I’m taking them. I’m at my wit’s end because without any meds, though I generally feel much better, I have terrible muscle/joint pain and unfixable constipation - so I can’t be without them.

If there’s anyone else who’s in the same boat, I’d love to hear from you. And please, don’t ask for my bloodwork results or what my vitamin levels are. I only want to hear the experience of someone else who is experiencing the same thing as me. Thanks for understanding.

[Rosebud1955]

Hello Fairy dancer: I’m presently taking Erfa + 12.5 Synthroid and is experiencing similar symptoms. I tried Synthroid + Cytomel but I think the Endo must have messed up the dosing of the Cytomel, so I switched to Erfa. I truly felt better on the Synthroid + Erfa but I think the Cytomel dose was not right so I switched. I regret doing so because I have never felt normal with Erfa. The only thing that improved was the fatigue. I have lost more than half of my head hair since being on Erfa. Have you noticed any hair loss? The hot and cold spells are horrific and I’m now recently experiencing the joint pain, tingling tongue and interrupted sleep. I’m also at my wits end with no help from the Endo. I live in Ontario and wished I have mor options. I want to try Synthroid + cytomel but I’m scared to make the switch over because my Endo is clueless. What an atrocity! It’s disgraceful the way thyroid patients are being treated globally. This is not a self inflicted illness, we deserve better than this. Animals get better care than us. I’m so frustrated and angry.

So what thyroid hormone are you presently taking at the moment? You’re not alone! Good luck on your journey to better health. Sorry I don’t have much more to offer.

[am111]

I think you have B12 deficiency. When we increase our thyroxine, the B12 demand on the body increases. I suggest taking a few weekly shots of B12 followed by a few monthly shots. After a couple of months, your B12 levels may be good enough for you to tolerate the increased thyroid levels that the meds will create. Also, increase very very slowly, may be only 12.5mcg/day till things stabilise and then again.

I am telling this from my experience, as I have faced a very similar situation.

[euonymus]

I was fortunate to be able to use Synthroid for several years before a doctor having a bad day pulled me off of it. I had a few problems with it at the start, feeling a little toxic the first two or three weeks, and adjusting to sweating more was tough! But it was a real life-saver, and it actually chased these heart symptoms I'd had all my life: I was diagnosed with mitral valve prolapse years ago, but after taking Synthroid, the heart symptoms went away. It's too bad that there's this myth circulating that levothyroxine is bad for the heart; fortunately, cardiologists researched the issue, and showed that, for those who keep their TSH in the reference range, it helps heart function.

I'm not a paid apologist for this product. But I believe that patients are often led by skeptical doctors to expect a bad experience from levothyroxine drugs, and I suspect that a lot of patients are deprived of treatment because of these misunderstandings. And, yes, T4 drugs will make you feel different psychologically, and that takes some adjustment. The journey of hypothyroidism patients to health is a difficult one, and don't expect any hand-holding!

[Litatamon]

A few things I can add -

It is beyond important to push through horrific symptoms for a good amount of time. I know, I know, I know that sounds like I have not experienced what you have and just do not understand. But I do. I had one combination where I literally did not go to the washroom more than five times in two plus months. Sounds absurd and a lie. I don't even understand how I didn't end up with a medical issue. I have also had months where I had narcolepsy-like events almost every day. In a conversation on text, phone drops out of my hand and I am asleep. Instantly. And these are not boring conversations. 🤩

I have had many times where symptoms were unbearable and then suddenly they were not. So pushing through is productive. And it also brings critical clarity when nothing changes after consistency for an extended time.

So maybe you are holding steady with one dose, one choice of hormone for two months, but it is important for others to read too.

With NDT (ERFA & Thyroid S) I would have 💯 said I can not do that choice if I judged by two to three weeks of trying it. Once again, I have no idea how quick your switches are, just writing this out for everyone.

And here is another possibility. I was forced off NDT due to budget and border issues (Canadian too - and yes bitter we don't even have one lactose-free choice besides compounding). Devastating for me as Synthroid was nothing but awful.

Guess what I am on and doing *okay*? Synthroid! I asked my endocrinologist to write up a presentation in a combination of 50s. Why? I had read that they do not have dye in them and have less ingredients in general. So I drive the pharmacist batty since I am on 300mcg (actually 275 but my endocrinologist writes it out so I have space to increase slowly & definitely get all 50s). So you might want to give them a try.

(Our other levothyroxine choice Eltroxin was just awful for me)

I have a prescription for Cytomel and sometimes have taken a small amount but it raises my BP a lot. And I only have one kidney so I have to be careful.

A lot of your symptoms do sound like b12 deficiency (I have it and take shots) so I know you asked not to hear that angle but I think the post above has a ton of merit. Constipation was my life before my b12 deficiency was found. The last four years have been a dream in that area (besides that one thyroid hormone amount listed above). Yes I know I do not know your background and could be for a different reason.

Well that was a novel🤣, all the best to you.

(If you would like me to post my thirty plus symptoms that I had for years before my b12 deficiency was found, just let me know)

[Nfeeney]

sorry but I have not had any of your issues with Synthroid. I did have trouble with generic versions as the formulas were not consistent.

I have read that some patients use natural formulas from horses but have not researched it.

[Hidden]

Hiya. I am in the same boat, and at the end of my tether feeling so rubbish a lot of the time. It's also quite a strain on the bank balance trying all this stuff for what seems to no avail. If you work out your issue, it would be helpful to let me know, I'm stumped!