Levothyroxine was making me so ill, need some advice

[haiiroika]

Hi there, i've been on thyroxine(50mcg) since i was 21. When i first started, i was about 15 stone, perhaps bigger. I was eating badly, a lot of bad foods etc.

I ended up feeling better, saw some weight loss and then gained more weight over the years, got up to about 16 and a half stone.

I ended up having a lot of problems with my stomach over this time. Couldn't eat many foods, had severe bloating, fluid retention etc. I ended up getting the weight off a few years ago and im now around 10 stone but i had to eat barely anything and exercise everyday. I was eating half a seed bar and a slice of salmon everyday for a year to actually lose this weight.

I have noticed a lot of fluid around my stomach area, when i asked doctors, they said it was loose skin. Before my period, i'd bloat up severely, after eating anything, i'd bloat and gain fluid on my hands, face, abdomen, legs etc.

My heart was sitting in the 50s and i kept sweating and having palpitations and some anxiety. I also could not lose weight even though i was barely eating and working two jobs and cleaning my house in between the two jobs. The last year, i would say ive actually gained weight which is absolutely mental considering what i do everyday, ive got two physical jobs and i never sit down. Id keep getting so tired at work and my muscles would feel like weights.

So, if i was taking too much levy and going hyper, why was my heart rate low(slow metabolism) and why was i losing no weight?

I came off levythyroxine about a week ago and most of this has gone. Feel cold, have had some achy joints and dry eyes, dry legs, and some fatigue, especially after the first few days but it seems to be getting better now, i feel better..

If i now overeat, i dont wake up bloated, i wake up with a flat stomach. I still have some flatulance and a little pain but nothing like it was before.

I need some help as to what to ask the doctor if anyone knows because im worried they wont switch the brand or will give me a worse one. I never have much luck with the doctors believing what i say, especially about fluid retention. A lot of the times they say things are in my head and im anxious. They said this about my stomach and health before but i was diagnosed with systemic sclerosis shortly afterwards which afffects the gut hugely. The only gut problem im getting right now is diarrhea, which i had before when i was on thyroxine anyway.

Any advice would be appreciated! Looking for what tests to get done, what brand would be better, do i have to ask about testing vitamin levels, cortisol levels etc?

[Clutter]

Haiiroika,

Talk to your pharmacist about trying an alternative make of Levothyroxine when you get your next prescription. There are four makes available in the UK:

Mercury Pharma 25mcg, 50mcg, 100mcg.

Actavis 50mcg, 100mcg.

Wockhardt 25mcg.

Teva 12.5mcg, 25mcg, 50mcg, 75mcg, 100mcg.

[haiiroika in reply to Clutter]

Thank you very much

[Saggyuk]

Hi there

To be honest, I think the levo/brand is the least of your worries. If you barely eat anything, you will be massively nutritionally deficient in everything. You can request Vit B12, Folate, Vit D, and iron (ferritin) plus a full blood count to see how deficient as many hypos are deficient in these even if eat properly. Low iron, low B12 and low protein will all cause heart problems as well as other things. Some of these deficiencies can cause irreversible and permanent damage.

Women require 2500 calories a day for everything to function efficiently- some maybe a little less. You're body needs food and nutrients to function as does all your organs including thyroid. Although you may have lost weight at first due to low calorie intake, the body will work harder and harder to slow metabolism to keep you alive longer, your body basically wants to slow down for survival. You will be putting stress on all your organs and one by one they will start to fail like your thyroid,

Without enough food, your body has to get energy from somewhere and will start to convert more glucose from liver stores. Once it has run out of this, it will then break down muscles and fat to convert to energy (might be why you lost weight also), this will also wreck havoc on your adrenals as body will use adrenaline to keep going once it runs out of all else and your cortisol will be sky high until your adrenals start to fail and you get adrenal fatigue which stops thyroid function and conversion and then you go round and round in one never ending loop.

Kidney/liver function will be need to be tested also as they would have been put under pressure and water retention can be a sign of this as well as unstable glucose levels. Plus both these organs require certain nutrients to work properly and stay healthy.

Being nutritionally deficient if you were eating a bad diet before thyroid failure can actually cause thyroid failure - for example, iodine deficiency is the leading cause of thyroid failure globally. medicating thyroid when nutritionally deficient will also cause meds not to work as body wants to stay that way.

Basically you need a full health screen - all vits, kidney/liver function function tests/ full blood count/electrolytes, calcium (bone profile), diabetes checks and so on to see where you are with it all.

However, there's a couple of things you mentioned that stood out that were very familiar to me, you have repeatedly mentioned stomach issues and having been there before it all started so I'm wondering if this is where it all started. Did you have the fatigue, swelling and water retention first too? And you still mention having diarrhea and so on. It's so hard to say as you will have so many issues from your lack of eating but have you been tested for coeliacs? Problem is blood test for this is notoriously unreliable and you may not have been eating enough of it to test positive anyway and even if you waited for endoscopy, you still have to eat lots of it to test positive. If you had stomach issues first, I would highly suggest a gluten free diet or solving this issue as a priority.

My appetite was always very low and I can see how I could have easily ended up in your position if my head didn't tell me to keep forcing something down my throat and if I had been more unaware of the consequences. However, I never actually wanted to eat and never quite enough. Like you, I instantly bloated and swelled up and crashed. I had stomach issues since I can remember, fatigue and a lot of water retention in my legs from a teen along with other issues and thyroid failed early and I always seemed to feel that little bit better when i didn't eat and could do that little bit more - turned out it was because eating did in fact make me feel worse and gluten was the culprit. Does this ring true with you at all? If you do have something like coeliacs, even though you might not have eaten much, just one tiny bit a week will cause you to stay ill.

Regardless of this, you must must get on top of the other issues, it will not help you so you must start to eat properly and healthily and work out any stomach issues along the way. You can try testing for it but to be honest you have to be eating a lot of it for positive test and will take a long time for diagnosis which I don't think you can really spare so think you should just try it.

I would also suggest you are in no fit state to exercise at the moment as body wont have the things it needs to be able to cope with it!

I'm sorry to be so blunt but sounded like you needed a a very loud wake up call as going to take a lot of work to turn it around. It's going to be hard and you'll have to learn a lot but you have to take control of this before it's too late and get your tests done and work on each issue although will take huge determination to repair and re-balance everything. Hope you don't take it the wrong way.

And of course I might be completely mistaken lol

[haiiroika in reply to Saggyuk]

The reason I never eat is because I feel like crap when I do. When you're severely bloated, holding fluid and going to the toilet loads then yes, you kinda have no choice. I understand what you're saying but this has never been a choice, I like food, I like eating and I've been to the doctor over and over again explaining my worries about the lack of vitamins and they couldn't care less. I have told them I need to eat more, I mean, I eat a banana(half) and I'm doubled over in pain, a little palm fruit oil would give me diarrhea, Id get so ill id be lying on my bed for the next two hours trying to breathe and calm my heart down, so how does one eat nice and healthy when they feel like that and then end up malabsorbing everything anyway?, I was told, after my last blood test that my vitamin levels are fine, however, I will ask again at the doctors to make sure. In terms of the testing..no. I'm not having that done because the solution is to eradicate gluten which I've been doing for ages anyway. The stomach issues cant be worked through either, I'm glad you think it's that simple but before I came off levy, I was near to suicide. Funnily enough, no problems since stopping it and I can actually eat some chicken without bloating up like I'm 9months pregnant. I had some gluten yesterday and no bloating, still no fluid retention either, interestingly.You should come talk to the doctors I've had because none of them have ever bothered about the fact I cant eat fruit or veg, I was, instead told to take some orange juice and a multivitamin. Thanks for the reply, will see what doctor says on Monday

[Saggyuk in reply to haiiroika]

I'm not sure docs will help you, they generally don't but definitely get tests and results as docs often leave people deficient as don't understand results. Also things like iron deficiency and B12/folate deficiency mask each other in the blood count and most docs seem unaware of this too. Multi-vits wont help anything. I really don't think it's that simple, which is why I said it will be difficult.

I know it might have been the stomach in the first place that led to years of not eating, which is why I asked. When it's got to this point, it's really hard to get your stomach working again so you need to look into it - healing your gut. You need to add things slowly and build it up - things like stomach acids will be very low. You need good pro biotics as stomach bacteria won't be great either - the good and the bad ones. Plus organs that help process it all wont be 100% either. Need to look into foods that are easily digested first also.

For example, things like coeliacs will make your stomach bad all the time even if only eat tiny amounts of gluten in cross contamination from your toaster etc or eat a tiny bit every few weeks or even once a month - this is enough to keep you very ill and not process all foods including veggies. Coeliac peeps often wont heal their stomach for 1-5 years although have improvements in in the mean time. If not coeliacs, then you need referral to gastroenterologist for proper investigation and/or working out whether anything you did began this cycle.

I wasn't trying to have a go honestly, just trying to get you to see that you need to put all your energy into fixing it and read up on it all as your body just wont cope with it and there's enough indications that it isn't. You need to work out initial cause of stomach issues and then deal with the other stuff based on what comes back in tests.

You've mentioned continued Diarrhea and having stomach problems before thyroid and thyroid meds so unlikely to be levo causing anything but I'm sure your body might feel happier if allowed to remain in slow metabolic state as this is what it does to relieve the pressure being put onto it.

I do hope you find a way around it soon and feel better