I stopped taking Levo.....advise pls. - Thyroid UK

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I stopped taking Levo.....advise pls.

sa1234 profile image
16 Replies

I decided to stop my Levothyroxine because it made me sicker than before.It also made me more tired and I got sick of getting infections every month.My throat was always sore,chest was always congested,frequent UTIs and my WBC were falling so fast.I was also getting more depressed and anxious.I became a horrible horrible person...I was so mean with everyone especially my parents :(

I became over sensitive and started crying over everything.So I decided to stop T4 and see if I feel any different.

The day I didn't take my T4,I felt better and surprisingly had a bowel movement in the morning.My fingers weren't stiff and I was not feeling sad or tired.

Ever since I started taking Levo. I told my doctor that I don't think I should be taking thyroid meds because I had a feeling that something else was effecting my thyroid hormones.But the doctors never listened.I read that high cortisol effects thyroid function and so does extra estrogen levels.High estrogen also converts into cortisol.Other hormones can also effect thyroid.

Estrogen dominance and hypothyroid symptoms are also similar ,like cold hand and feet,gaining weight more on thighs,hips and abdomen,digestive issues,chest congestion,upper respiratory tract infections,UTIs and constant need for throat clearing,hair fall,acne,dry eyes and skin.

I am beginning to think if my thyroid went under active due to other hormonal imbalances and the doctor didn't bother to check that?

I don't want to take T4 anymore because it really makes me feel so sick.I am reducing my dose slowly ....I was taking 300mcg a week.So I reduced this dose to half and took 150mcg the last week.This week,I will take 75mcg and then completely stop t4 .

Pls advise if I am doing it the right way?

I had my periods 10 days ago and had it 8 days early this month (after taking b12 shots).I am starting to get acne again.So maybe I do have estrogen/progesterone imbalance.

I forgot to mention that my throat gets dry and feels sore when I take T4. But doctors won't believe me :(

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sa1234
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16 Replies
Clutter profile image
Clutter

Sa1234, Even if you have oestrogen/progesterone imbalances I find it difficult to believe you can have any natural thyroid function when you are prescribed 300mcg Levothyroxine, which is a substantial dose. I think you'll start feeling hypothyroid within a week or two of reducing dose.

Have you tried different makes of Levothyroxine to see whether one suits better than another? Mercury Pharma, Actavis and Wockardt are the makes available in UK but you can use your prescription to buy European brands which might suit better.

Rather than stopping Levothyroxine and becoming hypothyroid which will take weeks to recover from, why don't you buy T3 or NDT and titrate doses until you are off Levothyroxine? Less painful that way :)

______________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Jazzw profile image
Jazzw in reply toClutter

I read that as 300mcg a week - which isn't a very high dose...

Not ever so sure which it is - do you take one dose a week, sa1234?

sa1234 profile image
sa1234 in reply toJazzw

I was taking 50mcg 5 days and 25mcg 2 days.

My doctor was just trying to bring my TSH within the range and this was the dose that did that.50mcg suppressed my TSH (0.04) and my dr freaked out because she said that I have become hyper now....lol

Clutter profile image
Clutter in reply toJazzw

Thanks, Jazzw. Gorrit now :)

sa1234 profile image
sa1234 in reply toClutter

Hi Clutter,

Thanks for your reply.I will think about T3 but my gut feeling tells me that there is something else happening in my body and I need to address that as well.

I am going to see another doctor next week and I hope he helps me finding out what is really effecting my thyroid.

shaws profile image
shawsAdministrator in reply tosa1234

Your dose is really quite small and that in itself can make you feel quite unwell. Some doctors are more concerned with the TSH that they pay little attention to the clinical symptoms of the patient.

Some people cannot get on with levothyroxine as their body doesn't accept synthetic levo to well and there's not a hypoallergenic one. I too felt worse on levo than before I was diagnosed. I was fortunate to get prescribed T3 only eventually but the doctor you're going to see might at least add some T3 to your T4. I did find a big difference with the addition of T3 but felt much better on T3 only. Some people cannot convert T4 to T3 because they have a gene fault which I doubt most doctors are aware of:-

thyroiduk.org.uk/tuk/testin...

Go to the last question on the page September 6, 2001

web.archive.org/web/2010103...

humanbean profile image
humanbean

Regarding B12 and acne...

I think that taking high doses of B12 can often have acne as a side effect. I take high dose B12 (methylcobalamin) lozenges and I got lots of spots for the first few weeks, but the problem wore off after a while. Now, I actually get fewer spots than I did before I started taking the high dose B12.

Jazzw profile image
Jazzw

OK, let's have a think. So you were taking 300mcg a week - which is less than 50mcg a day? That's actually a very low dose. I'd suggest that if it *is* your thyroid, the problem has been that you've not been on *enough* levothyroxine.

An odd thing often happens when people reduce their dose. i suspect it's the pituitary gland sensing the lack of readily available thyroid hormone sends a big kick to the thyroid to make some. If your thyroid is worse for wear, it might manage to keep up with demand initially (hence you feeling better) but what tends to happen next is that things deteriorate and it can't keep up, and you'll go downhill over the coming weeks and months. If your thyroid is ok, then that won't happen. Hard to say which will happen!

It would be really interesting to see your thyroid blood test results if you have any. If not, it's worth getting them from your doctor, so you can refer to them later.

sa1234 profile image
sa1234 in reply toJazzw

I had my thyroid levels tested last month and my TSH was 3.xx

The dr is happy with the levels because it's within the range...lol

I can't take levo.beacuse as soon as I take it,I get sore throat and allergy symptoms.

Clutter profile image
Clutter in reply tosa1234

SA1234, OK, I understand about the dose now. Still 300mcg per week and TSH 3 indicates undermedication. TSH 0.04 is only hyper if your FT4 &/or FT3 are over range. Bottom line is you need more thyroid hormone replacement than you are currently prescribed. You could take an antihistamine an hour before Levothyroxine to see whether the allergy symptoms improve. If not, and Levothyroxine doesn't suit, and it doesn't suit everyone, options are to self medicate T4+T3, NDT or T3 only.

_________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

sa1234 profile image
sa1234 in reply toClutter

Thanks again for your reply.But I cannot take antihistamine as it makes my allergies worse and I get congestion in my chest and throat which causes repiratory infections.Ever since I started taking t4,I cannot even tolerate eye drops which has antihistamine in it.Thyroxine has doubled all the symptoms I had before and it has made me more sick.

I didnt take thyroxine today and I did so much work this morning without feeling irritated,depressed or tired.I also ate canteloup without getting any dryness in my throat.I cant eat canteloup and so many other fruits when im taking t4 as it causes sore throat and chest congestion which leads to respiratory infections.

Clutter profile image
Clutter in reply tosa1234

SA1234, unless you can persuade your GP to trial T3, I think you might need to self medicate T3 or NDT if you have hypo symptoms when you stop Levothyroxine.

__________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

sa1234 profile image
sa1234 in reply toClutter

Dear Clutter,

Im wondering,what could be the effects of under medication?

I believe the patient would have same symptoms that he had before starting levo....right?

But my problem is that levo worsen my symptoms....it makes me dead tired.It increases my anxiety,depression,constipation,brain fog,allergies,sensitivity to hot n cold weather,hairfall etc.

Im trying to find out why is that happening?

Since I am having trouble with t4,I dont know how would I react to t3 because t3 is an active hormone.So this means that it will triple my symptoms and make me even more sicker.

I hope you got my point.

Im not r3acting well to levo.if i increase my dose,my symptoms increase as well.:(

Clutter profile image
Clutter in reply tosa1234

SA1234, I also reacted badly to Levothyroxine but the addition of T3 calmed the adverse effects Levothyroxine caused. Maybe worth considering.

sa1234 profile image
sa1234 in reply toClutter

I forgot to mention that my temperature also drops when on t4.My basal body temp.when taking levo is 36.2 and when off of it,its 36.5

sa1234 profile image
sa1234

Thanks romulalupine for your reply.

Im 34 but feel five times older than my age.I dont know what im going to do with my life...im so confused and lonely :(

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