Synthroid stopped helping?: I'm so discouraged. I... - Thyroid UK

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Synthroid stopped helping?

sbern profile image
13 Replies

I'm so discouraged. I have been feeling so bad for so long.. Two weeks ago I started on Synthroid (25 mcg) & overnight I felt better. Morning headaches didn't stick around as long, I felt more motivated, and alive. But since Sunday I'm back to feeling terrible. I've missed two days of school this week. My head hurts constantly during the day. I have no energy or motivation. I'm constantly cold. I wake up with my heart pounding at 4am everyday.. And even if I sleep 10 hours a night I haven't felt well rested in over 3 months.

I'm studying to be a teacher and this is really demoralizing.. I feel like I'll be the worst teacher ever. To be honest, at this point I don't even feel like life is worth it. I'm so bored and yet I can't bring myself to do anything about it. And no one in my life seems to care what I'm going through. They all tell me to try and not think about it so much?? :( :( :(

Here are my test results / range. My results are in brackets. I know synthroid 25 mcg is probably too low, but thats what they gave me and I have to wait 4 more weeks before my next blood test.

TSH 0.40-4.50 (19.97 & two weeks later 14)

Free T4 9.0-26.0 (11.8)

Free T3 2.8-7.1 (4.8)

Thyrog Antibodies: 0.0-115.0 (1828.0)

Thyroglobulin: 3.5-77.0 (<0.1)

TPO antibody: 0.0-35.0 (363.0)

Thank you for taking the time to read this.

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sbern profile image
sbern
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13 Replies
Sususulio profile image
Sususulio

You're still under medicated but you have only been taking medication for a short while and it takes a while to take full effect - looks like it helped initially but it is a low dose and you will probably need an increase at the 6 week mark. Others are more informed and they will comment but getting vitamin and hormone levels helps too - have you had them tested?

You will improve but it's small steps x

sbern profile image
sbern in reply toSususulio

My doc tested my iron and said it was too low, but didn't prescribe supplements yet because she wanted to see how my body reacted to Synthroid.. But now I'm reading that low iron keeps Synthroid from working so it doesnt make much sense to me. I will talk to her about vit. D & B12 when I see her next.

Its just so frustrating cause so much time is being lost. I feel like death & I have to wait 4 weeks and then wait 6 more etc etc. I don't know how people get through this.

greygoose profile image
greygoose in reply tosbern

By learning to be patient. You cannot hurry hormones. You have to allow them to be metabolised before increasing or you're going to stress your body and make things worse.

Of course, it doesn't help that you have a doctor who has no idea what she's doing! What sort of effect does she thing Synthroid is going to have on your body? And how does she think raising your ferritin levels are going to interfere with that? Her reasoning is erroneous, and you are right, Synthroid will not have much effect at all if your ferritin is low. :(

sbern profile image
sbern in reply togreygoose

I know.. I need to be more patient. It's just so hard. I spent all of last year sick with mono and now this :( I can't even muster energy to do dishes but I need to write papers and go on stage and finish university :( sorry, I'm ranting.

She said if she started me on iron supplements and synthroid at the same time then we wouldn't know which one was helping if I started to feel better.

SlowDragon profile image
SlowDragonAdministrator in reply tosbern

You had mono last year

That is probably the cause of now having Hashimoto's.

Mono, is a form of EBV also known as glandular fever

en.m.wikipedia.org/wiki/Inf...

Link between EBV and Hashimoto's

thyroidpharmacist.com/artic...

hypothyroidmom.com/hashimot...

scdlifestyle.com/2017/04/gu...

yourbestthyroidlife.com/eps...

I guess you are in the USA?

Lots more doctors over there that are aware that with Hashimoto's you need to treat the root cause

Your doctor should have been aware of EBV and Hashimoto's

sbern profile image
sbern in reply toSlowDragon

I'm from Canada. I read of this link online. My doc didn't mention it. She did run a mono test though, because I intially thought it had come back because the symptoms were so similar. The test was negative.

greygoose profile image
greygoose in reply tosbern

Well, obviously you wouldn't start them on the same day, you'd leave at least two weeks between starting each one.

But, that's so silly! Because both of them are going to make you feel better. Both levels need raising urgently, and raising your hormone levels to optimal could take years. And, as has been said before, they work together, so neither of them are going to make you feel better without the other one. She just doesn't understand hormones and nutrients. She's probably confusing them with beta blockers, and stuff like that.

ITYFIALMCTT profile image
ITYFIALMCTT

That is a tiny dose and you're probably several tweaks away from establishing yourself at the appropriate dose for you so it's horrible but not surprising that you feel so poorly. Typically, your blood tests will be repeated every 6 weeks and the levo. dosage increased by 25mcg until you feel better and/or the test results are in a suitable range. Is there a particular reasons why your GP had to start out at such a low level of levo. with you?

You have very high thyroid antibody levels - and with your other results it looks like Hashimoto's is underpinning the hypothyroidism. SlowDragon has lots of suggestions about reducing the antibody levels that might help you to feel better.

As SusieAG says, if you have any vitamin and mineral levels, complete with their reference ranges, it would be helpful to see those. It's common for poor absorption to be arm in arm with Hashimoto's and that can be reflected in low levels of vitamins and minerals.

If you've haven't had the tests as yet, it's good to see iron, ferritin, folate, B12, vitamin D etc and your GP should be able to arrange to have them tested for you.

As you know, an appropriately-medicated hypo patient tends to find that the TSH will stabilise at around <1 as that is typical for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. And that is where you tend to have a good conversion of T4 to T3.

sbern profile image
sbern in reply toITYFIALMCTT

I think she started me on such a low dose because she doesn't really think I have hypothyroidism but because I was in such a pitiful state, she felt like she had to give me something.

She called it 'subclinical' & said my symptoms were 'quite the mystery'.. She's also having them check for HIV & pregnancy on my next blood test, so she's looking for other causes.. (Neither of these things worry me though because I'm in a committed relationship and have been for a long time)

All this makes me feel even worst about the whole thing. Invalidated really.. Like I'm making it up.

ITYFIALMCTT profile image
ITYFIALMCTT in reply tosbern

Your blood test results, TSH plus antibodies practically have a flashing neon sign over them, saying, "Overt and Flagrant Hypothyroidism" so I'm a bit baffled that she thinks it's more akin to subclinical hypothyroidism. I'm obviously missing something here and I don't know if shaws or someone similar would know what it is.

Your FT4 is in the lower part of the range as the amount of levo. you're taking isn't enough to improve that as yet. And your FT3 will improve when there's enough T4 to convert.

So, it may well take a while to improve.

I'm pleased your GP is exploring reasons as to why you're feeling so unwell but I have to plead ignorance as to why she thinks results like these point to subclinical rather than overt hypothyroidsm.

SlowDragon profile image
SlowDragonAdministrator

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. When they are too low they stop Thyroid hormones working.

Changing to a strictly gluten free diet may help reduce symptoms.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

shaws profile image
shawsAdministrator

You have to phone and ask for an increase to 50mcg of levothyroxine. If the doctor said you have 'subclinical' she should still prescribe a proper dose. A dose which is too low can backfire. 50mcg is the usual starting dose and after 6 weeks a blood test with an increase until you feel well. The following is from Thyroiduk.org.uk and a Research Paper. Maybe your doctor hasn't read it. Extract (and don't be frightened by the quote) I am not medically qualified but few doctors are knowledgeable.

"Even Mild Thyroid Problems Double Risk Of Heart Condition

According to a new study presented on Thursday, Oct. 4, at the 78th Annual Meeting of the American Thyroid Association (ATA) in New York, individuals with subclinical hypothyroidism—a mildly underactive thyroid only detectable by a blood test—are twice as likely to develop heart failure, compared to those with normal thyroid levels. Heart failure is when the heart can't pump enough blood to the body's other organs, which can cause fatigue, ankle swelling and shortness of breath."

thyroiduk.org.uk/tuk/resear...

You can say you've taken advice from Healthunlocked etc etc and the consensus is that your dose is far too low, using the FT4 and FT3 which are below range.

T3 is the only active thyroid hormone (T4 is inactive and has to convert to T3), so you need more levothyroxine to raise both Frees.

We have to read, learn, and ask questions in order to recover our health. Certainly most on this forum have found that Endocrinologists and doctors seem to know very little about the function of the thyroid gland or how best to treat patients. They seem to treat a blood test result but not the symptoms.

sbern profile image
sbern

Update: I ended up seeing an endocrinologist 6 weeks ago. He increased my dose to 0.112mg & sent me for an ultrasound because he was worried about the goiter. I felt really good for about a month on the new dose, but these last two weeks have been hard. I went for the blood test just now, although he asked that I go in 2 weeks. I just can't stay like this...

Good news from the ultrasound: no nodes! The tech did ask me if I knew what Hashimotos was. She said it looked like Hashimotos.. I didn't know that was visible on ultrasound..

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