Digestive problems caused by Levothyroxine.

[kathro]

I really need your help. I have been going to the Endocrinologist for about 5 years now and in that time I have not felt better. I was taking Levothyroxine for a long time and I felt really ill all the time I felt as though I was being poisoned and I was in a lot of pain all over my body. I managed to convince the Endo that I needed T3. He gave me a prescription for Liothyronine 20mcg a day. with Levo 100mcg I tried this for a while but still felt as if I was being poisoned. I told him I was stopping taking the Levo and he agreed to trial me taking Liothyronine alone 15 mcg. a day. I continued on this for a couple of years but the Endo kept saying the symptoms I had was nothing to do with my Thyroid condition. He tried me on high doses of vit D3 but I didn't feel better. He put me back on Levo 125mcg and not to take T3. Since I went back on it I still feel ill and my stomach is now really bad. Once again I feel as if I am being poisoned. Can you please advise me as to what to do? My stomach is really bad and I am at a loss.

[shaws Administrator]

When we are hypothyroid everything slows down i.e. pulse, temp and stomach acid. Stomach acid is needed to dissolve our food but the symptoms we get sound exactly like we have too much stomach acid and some doctors prescribe antacids which they shouldn't.

Some people have a defective gene DIO2 and I'll give you a link. It would have to be done privately. I felt far worse on levothyroxine than before I was diagnosed so eventually I had to switch to another but it appears to have been withdrawn by the BTA.

If it is proven you have a defective gene the Endo should prescribe T3 only.

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

scdlifestyle.com/2012/06/hy...

We have to take our thyroid health into our own hands and many members have found a benefit.

[kathro in reply to shaws]

Thank you Shaws I have read the links you suggested and I will try what they recommend.

[SeasideSusie Remembering]

kathro Have you always had the same brand? Just wondering, if so maybe you're reacting to one of the fillers and you could try a different brand. Or are you Lactose intolerant?

[kathro in reply to SeasideSusie]

SeasideSusie My GP says there is nothing in the tablets to cause stomach problems and I should try eating something at the same time as taking them. I tried this for the last 2 days but my stomach is really bad now. I tried to get an appointment with the Endo but all I got was his secretary she said she would tell him the problems I was having. I haven't heard back from him. I won't take the levo tomorrow I can't do with this stomach it is painful too. I have had to turn to the HealthUnlocked for help. Thank you for trying to help me.

[SeasideSusie Remembering in reply to kathro]

kathro Have a look at this page on ThyroidUK's main website, click on the first purple bar

"UK - Synthetic Levothyroxine (T4) Tablets"

thyroiduk.org.uk/tuk/treatm...

And have a read through all the fillers and excipients in the different tablets. There are plenty of ingredients that people can react to.

Underneath that there are liquid Levothyroxine that are available which are worth a try.

I imagine if you are Lactose intolerant you'd already know.

Chase up the endo. Make a nuisance of yourself until you get sorted. You can't continue as you are.

[milkwoman in reply to SeasideSusie]

Just wanted to add in my $0.02 here. I had TERRIBLE stomach issues taking Unithroid (a brand of Levo). I have no issues when taking Tirosint brand of Levo (only contains gelatin).

Your GP is wrong as there are LOADS of incipient ingredients in meds that can disagree with you. I do not know what ingredient in the Unithroid that was affecting me. All I know is after a few weeks of stomach pain I HAD to switch back to Tirosint (name brands are more costly here in the US so my endo was having me try a lower cost version). The increased prescription cost for the Tirosint is worth it to me since I no longer have stomach pain to contend with.

I did test this as well to make sure it WAS the Unithroid. Every time I take Unithroid - even just a little bit (I have leftover Unithroid tabs) - I experience stomach pain. I just seem to be sensitive to medications (I also had severe stomach issues on generic hydroxychloroquine for my lupus and now only take name brand).

I've read here that folks who have experienced stomach problems have talked directly to there pharmacist. They are the ones who know which brands cause the least issues and can guide you. When you do find a brand that works, you can have your doc write your script specifically for that brand only.

Good luck.

[kathro in reply to milkwoman]

Thank you for that piece of advice I hadn't thought of asking the pharmacist. I could never try all the different brands without help

[helvella Administrator Thyroid UK in reply to kathro]

As you are in the UK, it is actually quite limited. Just the four formulations:

Mercury Pharma (whether labelled levothyroxine or Eltroxin)

Actavis (also labelled Almus)

Wockhardt

Teva

The way the prescription has been written can make it difficult as not all makes are available in all doses. Other than that, it just requires co-operation from a pharmacist or determination to go round as many pharmacies as needed.

[helvella Administrator Thyroid UK in reply to milkwoman]

Not so - Tirosint also contains glycerin. (And, for completeness, water.)

[milkwoman in reply to helvella]

Yes, I forgot about the glycerin (and the water). My apologies! I suppose some folks might be allergic to glycerin. Thankfully, I am not.

[helvella Administrator Thyroid UK in reply to milkwoman]

Easily done - but as you say, someone might care about the glycerin for some reason.

[kathro]

Reallyfedup123 My latest bloods are tsh 1.8, free t3 4.7 free t4 4.4 vit D3 53.1 Calcium 2.35 PTH 5.2 This is the only tests they do.

[sobajoe]

What you describe is something very similar to my own experience . Now I don't know the exact mechanism , but I found I was not able to tolerate any increases , my TSH would slowly move and get suppressed etc, and when I went onto NDT , my stomach played up worse . It was playing before in a different kind of way. Anyhow , long story short , after a camera down my throat , I had a small hiatus hernia and mild GERD , which while hypo didn't give as much symptoms because of the reduced acid . Start on thyroxine , or something that really works like NDT , then the stomach acid increase and you get the heartburn GERD, headaches , dry mouth , bach pain and spasms etc . Once I started on ant acids I noticed that my dose of NDT could be raised in response to a now increasing TSH. When I got up to about 4 grains , from 2 grains , I started to slowly show recovery from being hypothyroid - hair growing back , mood better etc. I am pretty sure that due to the GERD something strange was going on with the TSH staying low even though I was clinically HYPO. Good luck.

[Hidden]

I'm curious why no one has brought up NDT (natural dessicated thyroid)? It's WAY better tolerated than synthetic thyroid in many, many cases! I've had nothing but agony since starting Levothyroxine, with profound loss of normal gut function and agonizing bloating. I'm currently looking for a progressive GP to switch asap, but in my neck of the woods (rural prairie region in Canada) that's a nil to impossible goal.

[holabola]

I started taking my Levothyroxine, first thing in the morning and since suffered badly with heartburn and gas. I've started again taking it later in the day now and not necessarily on an empty stomach and my heartburn and gas has greatly improved. I did feel better energised whenI took it in the morning first thing, but the indigestion etc was unbearable.