Whoah! only 2 days in and...

[Portia1974]

It's 11 o'clock and I have done NOTHING. In a daze and all I want to do is lay down and go to sleep. Can't focus on anything. Nauseous. I'm only 2 doses in on 50mcg of levo and my rational mind is telling me that it couldn't possibly be having any kind of effect after just two pills! Could it?!!

[Hidden]

Doesn’t sound like it’s helping you Portia. Can you get in touch with the person who prescribed it. Explain how it’s making you feel 😶. I can’t tolerate T4 either x

[Portia1974 in reply to Hidden]

I'm thinking it might be a bit early for that. I expected a period of adjustment....I just didn't expect to feel any different after just two pills. But I do feel noticeably different and not in a good way. I'm just trying to figure out if it's the levo or coincidence. As in....

[Portia1974 in reply to Hidden]

Have changed to a different brand. When you say you can't tolerate t4....do you mean ANY brand? How are you treating if so? T3? NDT? Sorry for all the questions!

[greygoose]

Could be the fillers. Which brand are you taking?

[Portia1974 in reply to greygoose]

Teva greygoose . Defo something off. Fallen asleep 3 times today and extra weak. Very dry mouth/thirsty.

[FancyPants54 in reply to Portia1974]

I could not tolerate Teva brand. It made me feel very ill very fast. I was OK on a different brand when started. It was a few months later when I picked up a refill and found the Teva brand instead of what I had before. I didn't think anything of it. By the time I took the 4th tablet on a Thursday I felt terrible. I went to the pharmacy and begged them to get me the old brand back. They did, and they provided a packet of yet another brand for me to use before the originals came into stock. I took one of the 25mcg new tablets and felt much better within the hour.

So yes, it could be the tablets. Get your GP to give you a new prescription and ask for them to specify not Teva on it. Or go and see the pharmacist and see if they can help you.

[Portia1974 in reply to FancyPants54]

Changed to Mercury pharma with no argument. Mixed reviews from what I read on the threads but seems not to be as universally hated as Teva.

[greygoose in reply to Portia1974]

Lots of people have trouble with the Teva brand. Ask for a different one.

[Portia1974 in reply to greygoose]

Thanks FancyPants54 & greygoose . Have just discovered this thread after you mentioned it may be brand related:

healthunlocked.com/thyroidu...

Seems I'm not imagining it. Not a great start to my Levo "journey". Will be down the pharmacy tomorrow to see if they will change. Seems from the above thread that Actavis would be a better one would you say?

Not that I'll probably be give a list to choose from, lol!

[greygoose in reply to Portia1974]

I have no idea which levo would suit you best. It's a very personal thing, and I've never taken any UK levo.

[Portia1974 in reply to greygoose]

I was just asking if that one seemed to be more widely tolerated within the forum in your experience of talking to others. But only one way to find out I guess. Thank you

[greygoose in reply to Portia1974]

Yes, I know what you were asking, but I just can't answer. If people are doing ok on something, they rarely mention the brand. It's just that so many people do badly on Teva that it has come to my attention.

You're right, the only way to find out is to try it.

[Gambit62]

I totally collapsed when started on 25mcg and actually unilaterally upted to 50mcg because I was so suicidal on 25mcg - 50mcg was a bit better but I still had very little energy - wasn't until I got to 75mcg that I really felt any better - so may just be that you are on far too low a dose - yes it may be stopping your pituitary producing TSH but that doesn't mean that it is supplying the dose of thyroid hormones that your cells actually need.

[Portia1974 in reply to Gambit62]

Gambit62 that's exactly how I feel. Like my body is about to completely give way and collapsed on me. Struggling to get enough breath in my body. My upper arm feels like it is in a vice. Waking nightmare last night that I was being crushed/paralysed as I lay. Tried calling out to my partner but couldn't make a sound. Very tearful this morning. I honestly don't know how I can keep my body moving. I thought I felt bad before but this is a whole new level. Luckily my pharmacy is a 5 minute (slow) walk away. They changed my tabs from Teva to Mercury pharma. So will give those a try but think I will take at night. After how long did you decide to up your dose yourself? She's started me on 50mcg. I get the impression that 50mcg is simply a dose that gets the body acclimatised to a new "substance " rather than having a therapeutic effect and that that kicks in with the first increase. I can handle not seeing an improvement while my body adjusts...but I just can't cope with feeling worse since I'm already at rock bottom. Pfft. 3 weeks before my haematology appt where I hope to get an iron infusion. Iron current at 4. Really struggling. Sorry. That was a bit of an offload/mind dump!

[Zephyrbear in reply to Portia1974]

I think these problems you describe may have more to do with your iron levels than thyroid. My son-in-law's iron levels are similar to yours (he's due for an iron infusion tomorrow) and he's like a dead man walking at the moment. He's completely washed out and his thyroid is perfectly healthy.

Personally, I can only tolerate Wockhardt Levo, but then again, I am only on 25mcg combined with 50mcg T3. I found every other brand would have me breaking out in 24hr itching that couldn't even be controlled by scratching myself raw!

[Portia1974 in reply to Zephyrbear]

Gosh sorry to hear your son is struggling I think you're right. I've expressed concerns about starting this medication while my Iron is so low. I'm baffled by why doctors seem so universally unconcerned by iron levels that low. I feel so weak and can't help but wonder if my body just isn't in a position to cope with the addition of this med right now. I'm going to give this new brand a try for a few days. But if I feel worse again....I think I'll just discontinue and retry once my Iron levels are dealt with. Have an appointment with haematology in 3 weeks and am praying they agree to an infusion.

[Zephyrbear]

He went to the doctor's almost a month ago and was told he'd be given an urgent referral to heamatology for an infusion. The stupid GP (who had previously seriously compromised my granddaughter's health by failing to do his job properly) then promptly failed to send the referral through! In the meantime he continued to go downhill and it was only when my daughter phoned the practice to find out what was happening that they found out... Thankfully he'll get his infusion tomorrow, but he shouldn't have been put in this position in the first place! It's an ongoing problem and they all have it on his notes! Needless to say, some very strongly worded letters from both my daughters about this particular GP are making their way to the practice manager. The man is dangerous!

[Portia1974]

@Zephyrbear My gp took 3 weeks from our discussion to send out the referral for a haematology appt. That was in May. It took another fortnight for the letter from choose and book to come through. When I went online to book, earliest I could have was 20th August. So from time of referall to actually seeing someone (with no guarantee that they'll even agree to an infusion) 3months. (Although feels more like 3 years!) Duration of iron deficiency almost 10 years. I don't get it. I really don't. I'm so sorry your son is in the same boat. Hoping the iron infusion helps. Would love to hear how he gets on!

[FancyPants54]

Now you have said about your iron, I suspect that is your problem. Thyroid hormone will not be taken into the cells with such terrible iron.

Can you afford to go private for help with the iron? Personally I think I wouldn’t take levothyroxine at this stage. That iron is key.

[Portia1974 in reply to FancyPants54]

Thanks FancyPants54 here is my previous post asking exactly this:

healthunlocked.com/thyroidu...

I'm at a loss as to what to do for the best. GP has said no harm in trying. She's started me on 50mcg. I get the impression that 50mcg is simply a dose that gets the body acclimatised to a new "substance " rather than having a therapeutic effect (any uptake) and that that kicks in with the first increase. I can handle not seeing an improvement while my body adjusts...but I just can't cope with feeling worse since I'm already at rock bottom. Going to give this new brand a try for a few days. But if I feel worse again....I think I'll just discontinue and retry once my Iron levels are dealt with. Have an appointment with haematology in 3 weeks and am praying they agree to an infusion.. 3 weeks seems a long way off right now though. Sadly can't afford to get it done privately.

[FancyPants54 in reply to Portia1974]

She said there is no harm in trying because gp’s don’t seem to understand the importance of iron for thyroid hormone uptake. 50mcg is a starter dose. I started on 25mcg. I felt even that so there is no reason to say you won’t feel 50mcg, especially if your body can’t handle it. It should not make you feel awful.

[Portia1974 in reply to FancyPants54]

I agree it shouldn't make me feel awful. Especially after only two pills. Hence what led me to write this post. The question I now have to answer for myself is whether it was the brand (Teva) that was the cause. ie reacting to the fillers/formulation. Or whether it's a problem with Levo in general. I accept that my Iron levels will be impacting take up of the drug. But I'm struggling to understand how that would make me feel worse. If anything I would just feel no difference since my body wasn't making enough T4/T3 to begin with? Surely 2 tabs would not be enough to push my ft4 up so high it would make me feel so bad?

I'm really feeling my way here obviously as this is all new to me. Seems to me if I try this new brand for a couple of days and feel OK on it...then the problem is with Teva. If I feel awful on this brand too...then maybe my system is just too weak right now to handle what I understand to be, even at a starter dose, very powerful hormones; then I simply won't attempt them again until my Iron is up. But if I can take them with no ill effect, by the time my 6-8 weeks of starter dose are up and I'm ready for an increase, my body will be fully used to it, and ready for an increase, and hopefully I'll have had my Iron infusion too. It's all trial and error I guess.

[FancyPants54 in reply to Portia1974]

It is trial and error. By all means try the new brand and see how they make you feel. I don't buy this "getting the body ready for an increase" theory though. 50mcg is a dose. It's considered a starter dose however some take it for years, but you could have started on 25 or 75 depending on your condition. What normally happens is you take some hormone and your body spots this slight increase and counters it with decreasing it's own production. But it often over decreases to the amount added leaving the person feeling more hypo by the end of the 6 weeks because they are effectively getting less hormone than when they started. That all takes time though. That is not what has happened to you in 2 tablets. Then the patient increases to get more hormone but again the body will counter it. This goes on until some balance is achieved.

[Portia1974 in reply to FancyPants54]

Yep. Exactly my understanding. And yep. Can't imagine two tablets could account for what normally takes 6 weeks.

[katmell]

Hello again Portia1974 I had an iron infusion last year, not because i was anaemic but my ferritin levels were super low (got to 2 at one point) and I hadn't improved after taking tablets and then spatone drinks. The infusion took my ferritin to 400!! which apparently is normal. I didn't notice any physical symptom improvement although by the time i had it i was 8 months pregnant so super tired anyway but after a couple of weeks i did notice less brain fog. Which was nice!

[Portia1974 in reply to katmell]

Gosh that is low! Glad it had at least some effect. The brain fog is just as bad as the aches and pains sometimes!

[katmell in reply to Portia1974]

Totally! The brain fog feels much worse to me, i just don't feel like myself anymore. As for the iron infusion I had to really fight for it, kept being told by my GP, midwife and obstetrician that only being anaemic caused those symptoms, low ferritin caused no symptoms at all. It was like being told i was making it up, or over-egging how tired pregnancy makes you feel (despite it being my second baby). Eventually, after printing off academic articles stating low ferritin causes these symptoms my GP gave up and referred me to the hospital. She was clearly annoyed by it though and I haven't been to see her since. I also luckily got to see a second obstetrician who agreed with how it would make me feel. I was so relieved that day that i cried!

Anyway, point of the long story is to say don't be fobbed off by the idea that low ferritin but normal HB levels won't make your feel ropey!

[Portia1974]

"It was like being told i was making it up, or over-egging how tired pregnancy makes you feel "

This! For years! I sit there looking at them sometimes with my jaw hanging open wondering "how can you sit there and say this is fine???!!!"

My hb had always hovered just in the normal until the last few months where I am now an official card carrying anaemic. Cheers nhs for letting it get that far. Now I get..."Yes but you're only mildly anaemic" ffs. My ferritin us flip flopping between 5-9 and my Iron between 4-7. But hey. I'm only mildly anaemic.

"I also luckily got to see a second obstetrician who agreed with how it would make me feel. I was so relieved that day that i cried"

I get this. SO much. I spent the first session with my new GP crying because she vindicated everything I was saying. Then the practice nurse asked me "why on earth haven't they given you an infusion in all these years you poor thing!" Blubbed! Years ago when they first discovered my Iron and b12 deficiency the doctor (who sadly left shortly afterwards) said "how on earth are you even still standing?!" "I don't know!" I Blubbed, lol! It's just such a relief when someone understands isn't it?

[FancyPants54 in reply to Portia1974]

This is really going to be your problem. You might not even need Levothyroxine at all. But you need iron urgently.

[Portia1974 in reply to FancyPants54]

Seems no doctor I've seen has got the "urgent" memo. And yes....the fact that I might not even need Levo is something I've also been saying. In that last link I shared with you and more specifically in this one:

healthunlocked.com/thyroidu...

I'll be having a serious meltdown if in 3 weeks this haematologist tries to fob me off with iron tablets.

[FancyPants54 in reply to Portia1974]

Sorry, I'm at work, I don't have time to read your other threads, I have a lot of stress on today.

[Portia1974 in reply to FancyPants54]

Oh gosh you don't have to read or reply to anything. I appreciate that you have. Hope your day eases up on you!