So following on from my last post. I’ve increased my levothyroxine to 100mcg for 3 weeks tomorrow. I’ve now got a dry but lump in my throat every time I swallow but this is on and off most of the time. My chest is tight which not sure if that’s coinciding with being bloated or to do with my throat feeling tight. I generally feel like rubbish. An I’m so getting fed up with feeling ill non stop. I just don’t feel right at all and the drs aren’t really doing a lot to help with my symptoms I keep trying to get private tests but there isn’t any close to where I live in Plymouth. Has anyone had these symptoms and was in something simple that maybe I’m on too much levo now? I have upped my folate to 800mcg a day as well as this was on the low end of normal.
Increased symptoms on levo increase.: So... - Thyroid UK
Increased symptoms on levo increase.
I have been on 100mcg since February as they had to up from 75mcg because my tsh was high. Just had another test and tsh is below 2 now so have kept me on 100mcg. I now feel great but have the tightness in chest. I've had it since the increase. I just see the nurse now on an evening which at first I thought they were fobbing me off but she's great and is always quick to do a blood test( by the way she takes the blood in a morning as it's best she said). I told nurse about tightness in chest but I've been overall fit and well. She said it can be a symptom of too much levothyroxine but if I'm feeling good with it would keep me as it is. I would demand a full blood test for everything and say about all symptoms. Hope you find your cure
To be honest if this is a symptom of the increase I think I’ll go back down this is horrific. I’ve had enough of the increase in symptoms and not getting anywhere. No one seems to do much and I’m not getting any better. I just seem to be getting worse. I don’t think I feel as exhausted as I was but I’m so fixated on symptoms that I don’t know if I notice to be honest. I just know something has to give soon cause I can’t live like this anymore.
If you look at one of my previous posts I was saying the same when I went from 50mcg to 75mcg. I felt absolutely terrible. I was going to give up levothyroxine completely but stuck with it only because people on this site said to do so. Glad I did. Since been diagnosed with hypothyroidism 2 years ago it's only now that I'm feeling really switched on mentally, digestive problems resolved , exhaustion gone and even my head hair is growing back. I might even be going a bit the other way to hyperthyroidism as I'm eating loads and losing weight but don't want to mention it too much to the nurse in case she drops my levothyroxine as I'm feeling good at the moment. I would say stick with it but maybe mention it to doctor.
it’s extremely common to feed WORSE when initially increasing dose …especially weeks 3-6
Recommend you stick at it and retest 6-8 weeks after increase
Is brand levothyroxine same as before?
Try taking half dose waking up and half dose at bedtime
The anxiety I have is horrendous. I was starting to get this before the increase but now it’s horrendous. Like to the point I feel like I’m either gonna have a panic attack or a heart attack.
I always stick to the same brand. Yeah might be an idea I can’t take much more of this.
Anxiety is extremely common hypothyroid symptom
It will improve as higher dose settles
I use to have crippling anxiety……but improved as dose was increased ……and absolutely strictly gluten free diet dramatically reduced anxiety
To be fair I have eaten a lot of bread the last 2 weeks and I don’t normally eat any so maybe that’s contributed? I really hope this gets better cause it’s awful. How did you get diagnosed with gluten intolerance if you haven’t got coeliac?
Full details on my profile
I had no gut issues whatsoever, but crippling anxiety
I would strongly suspect your anxiety significantly exacerbated by eating gluten
In previous post you said you were on gluten free diet
There’s absolutely no point being almost gluten free
Read all labels, watch for cross contamination. Use separate GF toaster, separate jams, spread etc ….nothing with wheat, rye or barley
The last time I got accidentally gluten (tiny mouthful)….felt depressed and anxious for at least a week
Wow that is crazy, it seems like everyone has a really rubbish journey with hashimotos and hypothyroidism. I do really try to stay away from gluten but sometimes it’s hard when eating with other people and not wanting to be rude however after reading by I will definitely be going gluten free. It’s kinda nuts actually, last year I started going to the gym from March until October and most things I ate 90% was gluten free and I felt the best I ever did but I was eating skinny whip bars. It wasn’t until I had surgery in the September everything went out the window and kind of had a mid life crisis because surgery went wrong. So yeah would make sense. Although I did come off sertraline July last year so I’m not sure if anxiety has come back with vengeance because of that.
However I will definitely try it properly to see if that helps. Thank you 🙏
I thought I’d chip in because I have hashis and I don’t feel I’m having a rubbish journey - well, not so far 🤞🤞 I’m not gluten free, can take any brand of levo and don’t worry about when I take it. I’m aware this can all change in a stroke, but I just wanted to mention that you don’t tend to hear from the well people here.
I do get a tightness in my throat sometimes - related to what I’ve eaten. Also sometimes the sensation of a lump, often after eating apples and nuts, but not all nuts. I also get blood blisters in my mouth, and have occasionally had my lips swell. I don’t think these are related to my hypo condition as they’ve happened since I was a child.
Apples and quite a few fruits often cause stomach ache if eaten on an empty stomach and can cause bloating, for me. So I would have a look and see if you can relate it to diet.
I hope you feel better soon. It is so difficult trying to get to the root of things. I wish you luck .
I hope this is what my issue is. I am anxious, tired, weepy and just miserable right now. I just finished 4 weeks on this dose (100 mcg). I hope this is the last increase. I can't stand myself and I am sure no one else can either. I don't have any signs of being over medicated.
Hey, I hope you get some relief soon. It’s not nice. It’s horrible being anxious. I know how you mean about yourself. I always think I must a nightmare to be around because I’m always worried about something .
Hope you feel better soon.
I hope you get feeling better soon as well. I almost fear that I am over medicated now, but don't know if it would show up after only 4 weeks.
You could check, I’d imagine it would show to some degree. I know they say to test at 6 weeks. I’m almost tempted to see if I am now but I should probably wait.
For me weeks 2 and 3 of any increase are bad and I feel awful. So much so that I sometimes have given up on an increase that I really needed. And of course I've had to then go through the process again to increase, all the time regretting that I didn't stick it out for 6 weeks and then do bloods to see what was what .If increases are hard for you you could try gentler increases and slowly building up to the new dose. Or you could try splitting your daily dose as this is gentler on the body .
I keep trying to get private tests but there isn’t any close to where I live in Plymouth
Lots of us use fingerprick private blood tests, all done by post.
Would that be something to consider?
Lots of choices, most common ones used here are Blue Horizon, Medichecks, Monitor My Health, Thriva.
Will go and find the link to this forum’s parent website so you can also see the discount codes available for ordering them.
Here you go! thyroiduk.org/help-and-supp...
Sorry when I meant private tests I didn’t mean blood tests. I meant imaging tests like ultrasound or MRI but thank you.
I’m getting a similar dry weird horrible feeling in throat but have been thinking it was new bp med although I recently went up to 100 mcg levo too got palpitations initially but I did every other day till got used to it and thought I was ok on it but now wondering which med is causing problem. It’s Terrible when you get out on meds and feel worse than you did before
It’s very hard to know what’s causing the issues. I just wish I knew what was going on. It’s so frustrating. I just wanna feel normal again.
Hi Cade, I am from Plymouth too. When I increased my dose from 75 to 100 I found that I felt worse for a long time. It took 6 weeks before I began to feel better. Stick with it and hopefully things will improve. Good luck!
That gives me hope that this dosecof 100mcg will eventually settle in. I am at 4 weeks.
It seems to make you feel worse as your body gets used to the new dose. It was 6 weeks almost to the day for me.
To be honest at the moment I feel like I’m over medicated. Today I feel so anxious and jittery, when I move around I just feel worse. My throat isn’t as bad but my neck at the front does feel sore and also deep in my throat but not really when I swallow. I don’t understand how I can feel so awful.
I am going up to Derriford tomorrow to get my throat checked out as I am suffering some pain there. (Camera down the nose which is painless) I also had a scan at Derriford over a year ago which should a growth on the front of my thyroid. If you are concerned get your doctor to refer you so they can ensure its nothing suspect.
I had horrific symptoms on levothyroxine, I was constantly at the docs and out of hours surgery. My nausea was off the scale and I lost a stone not being able to eat. I kept putting my dose higher and felt so much worse. Eventually my doctor told me to come off all medication. I have been getting much better and on no medication I have a tsh of 3.2 and am feeling normal again. Docs are keeping a check every 6 weeks but think my initial high tsh was wrong and I didn't need medication.
This is a very unique case but it may be worth checking in with your doctor. Mine luckily have been very supportive.
If I could come off medication and be normal I’d be so happy because I hate taking medication but I doubt it would be ok for me to come off. Last time I tried to drop to 50mcg I felt like my body was glitching and wasn’t functioning. The thing is nothing is easy but also nothing is fast so you can spend months to years figuring stuff out and you can put yourself through so much as well trying to figure it out. I don’t even talk to my drs about thyroid meds anymore I just do what I feel is right for me at the time cause they don’t listen anyway. Trial and error I guess.
Hi Cade i only read through a few of your previous posts but noticed you mentioned tremors, shivers, and you're taking folate but b12 is high. I wonder if you have any symptoms of b12 deficiency and if you've ever been tested for pernicious anemia (PA)? b12deficiency.info/signs-an...
Sometimes the high intrinsic factor (IF) antibodies seen in PA can cause a false high b12.
And taking folate when (functionally) b12 deficient can make nerve problems worse.
I always had 'normal' b12 and they went high with supplements, but i was still functionally deficient. I cannot 'tolerate' thyroid meds when low b12. Starting b12 injections + lots of folate has been the solution and i was finally able to get stable on thyroid meds, not to mention it solved all my other (nerve/mental/fatigue) issues. B12 affects so many things in the body and indeed causes all sorts of 'random' symptoms.
Aw it’s been horrific over the last 3 months. I just can’t work out what the hell went wrong. My B12 on the 20th June was 738 my/L so definitely not low. Range being 190-883 but folate was 7.6 ug/L range 3.1-20 however ferritin was 71 ug/L range 30-400 so that’s on the low end of normal. I have upped my folate double to 800mcg a day.
I don’t get the shivering now and I seem to feel hot a lot of the time as well which isn’t normal for me. Shaking and jittery is new at the moment.
No, that's the problem with "functional" deficiency - serum levels look great but the b12 isn't getting into the cells.
And as I mentioned, IF antibodies can cross-react with the serum b12 testing, making it appear as if B12 is high when in fact it's just a test artifact and levels are actually low.
Then there is macrob12, making levels high, but the b12 is bound to multiple antibodies, making it high on testing but unusable to the body. Unfortunately this test is not available commercially. casereports.bmj.com/content...
B12 is more complicated that most people realize lol.
Anyway food for thought.
No way that’s mental. How is anyone suppose to know that. I’ll definitely look into it as this is bloody awful whatever is going on.
Oh yeah crazy i know. Most doctors have no idea. There are others with functional deficiency on the Pernicious Anemua forum here plus a wealth of info
A good place to start is to get PA testing before taking anything with b12 . The 2 tests MMA & homocysteine can show functional deficiency. And the two antibody tests can help diagnose PA: intrinsic factor and gastric parietal cell antibodies.
However they too are not without pitfalls. IF antibodies will come back negative in about half of people who really do have PA. Can be difficult to diagnose so people just suffer. Many of us self inject for that reason. But get testing first in any case 
It can be done privately as well but very pricey.
And here is a paper on high b12 levels. There can be several causes but one is, paradoxically, functional b12 deficiency. academic.oup.com/qjmed/arti...
Oh I think I looked up those tests before for some reason and yeah really pricey. Worth a go though. I’ve gone from anxious and jittery to now falling asleep. It’s ridiculous. I wanna get back to the gym and some normality.
You might try writing to your doctor to get testing. Letters are sometimes more effective. Here is a template you could use, see point 3 for example b12deficiency.info/writing-...
You can also print off the symptoms lists and mark the ones you have.
pernicious-anaemia-society....
b12deficiency.info/signs-an...
The problem with the private Medichecks one ( medichecks.com/products/com... ) is that they test MMA & IFABs but not homocysteine nor GPC ABs.
Yeah I just looked they do the homocysteine but only in London. It’s ridiculous what we have to go through to get someone to somewhere. I don’t think my Dr’s will do anything they’ll look at my results and say they are normal.
Yup that's the response i also got from my doc.
Got shouted at in fact, "did you go to 7 years of medical school"
No but i can read journal papers & self treat thank you very much.
Shocking isn’t it. It’s scary when you feel so ill and drs don’t do anything. You have to self diagnose and treat yourself these days to get anywhere. I’ve gone from crippling anxiety this morning to now falling asleep. I would seriously do anything to feel normal again.
After my last thyroid blood test I have been put up from 75 to 100. I am already on Mirtazapine for depression but like you my anxiety has gone through the roof.I’ve also lost my appetite completely. Like you I just want to feel normal again. I’ve taken the new dose for 10 days and have been told to repeat my blood test in 8 weeks. It’s a nightmare feeling like this can’t sleep, can’t eat and anxious all the time. I’m beginning to give up hope!
I feel for you I really do it’s really not nice. It just feels like one thing after the other at the moment. I hope it eases for you soon though. 🙏
I would try dropping to 75mcg for one or two days a week maybe and split the dose 50 in morning and 50 at night
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