I was taking 50mcg for 3 weeks but began feeling quite unwell, I didn’t want to get up off the settee I was exhausted. I felt better before I started the levothyroxine. I’m going on holiday in 4 weeks so I thought if I can get back to where I was pre Levo for the holiday then resume when I get back n take whatever symptoms I have to. It’s a 2 week cruise around the Mediterranean with my kids and will involve a lot of walking. I don’t think I’ll be able to cope with it feeling so ill. When I came off it 6 days ago I felt a lot better for 3/4 days but today it’s hit hard. I’m wondering when I felt better I should have carried on but just taking a lower dose. I had s few weird resting heart rate elevations which are maybe just my body getting used to the Levothyroxine? Wil my thyroid recover enough in 4 weeks for the trip or should I just go back onto 50mcg and then when I feel exhausted like I did just pull back a bit? Any info much appreciated.
On Levothyroxine feeling ill now gone cold turk... - Thyroid UK
On Levothyroxine feeling ill now gone cold turkey for a week but was it a mistake?
Looking back at our previous posts you have been on treatment now for a month I think? You might be as well if you felt not too bad on 25mcgs to stay on that and restest in 6 weeks.
Have you had your vitamin levels tested yet? Low ferritin is a frequent culprit for resting heart rate elevations.
Thanks Jaydee yes my ferritin was ok I think it was 22..I’m getting Vit d and b12 injections every month at the moment. I eat a lot of beef aswell so I think that’s ok. I felt crap on the 25 so I moved up to 50 but maybe I should have let the 25 build up first. I didn’t realise at the time just stopping for a day or 2 could make you feel better. Then I could have carried on. I just don’t know what to do for the best whether to ride it out now and see if I’m ok for the holiday or carry on taking the 25. 🤷♀️
A ferritin of 22 is not OK at all. A level of 30 or less is considered deficient by NICE. Whats happening about that? Have you spoken to your GP? That is likely why you are having heart rate issues.
You are just starting out on treatment and things can get a bit worse for a while for many people. You need to be on a stable dose for 6-8 weeks before redoing bloods and moving up a dose. By stopping treatment you are now starting right back at the beginning. If you can tolerate 25mcgs then start back on that and keep going until you can get bloods done again.
Have you started on a B complex? Most people require that.
Thank you I can’t tolerate b vitamins orally unfortunately especially b12 so I’m trying to work out which ones i can take and which ones I can’t.
If you can't tolerate methyl B vitamins then you could try this B complex. evitamins.com/uk/b-complex-...
sorry ferritin was 236 (30-400)
This is such an informative, interesting thread and I'm glad I caught it. I live in Florida so I am not familiar with brands and chemists in the UK. I've been on 50 mcg levothyroxine for about 25 years and never paid attention to manufacturer. I have heard to try not to change manufacturer so I generally get my thyroid meds from the same pharmacy, although I have tried getting a 90-day supply via mail order from my insurance provider. In this case, when medication comes to me in the mail, my concern is that the meds may sit in a hot mail truck or mailbox for the duration of a day in the hot Florida sun, and there may be some degradation of the medicine. But no provider seems much worried about that (go figure!). I wasn't aware there were various "fillers" in these pills. I'm just hoping mine aren't manufactured in India, but I have no idea where the manufacturing facility is because it's not listed on the bottle, only the manufacturer. That said, I haven't noticed any great variation in how I feel, but how would I know? I have other issues - RLS, bipolar, Raynaud's - that complicate how I might assign my feelings. I never thought about B12, iron, Vitamin D because my blood tests are always normal. This is very complicated from all sides of the issue of hypothyroidism! What I do know is that I can't lose weight no matter what, and I'm often cold/hot/cold/hot. But then I'm 70 and postmenopausal. I find the discussions on this forum to be invaluable because it seems to me that the writers in the UK have much more understanding of health issues. The responses here are always comforting and well-informed. I have no advice or comments to add to your situation, but I'm glad you sought out help in this forum. I hope your vacation is fabulous!
My Rest Of The World medicines document does include links to many USA levothyroxine and liothyronine products.
The information (either in the document or linked) often identifies the manufacturer but not necessarily the actually factory. For example, one says:
Manufactured by:
LLOYD, Inc., Shenandoah, IA 51601 USA
While the company Lloyd Inc will officially be located in Shenandoah, they could have factories elsewhere.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Two months ago the labs you posted showed hypothyroidism.
You cannot recover in 3 weeks of 50mcg levo
There is no quick fix for thyroid disease, it can take many months
That's not how it works
50mcg is only a starter dose so whoever prescribed that should have explained you will need to re-test after 6 weeks and review the dose.
it takes about 6 weeks for a new dose to settle in the body
You also need to optimise vit D, vit B12, folate and ferritin to support thyroid function
Your body/ symptoms are telling you it needs levo....and more than 50mcg... as do those labs of 2 months ago
Sorry but recovery in 4 weeks is highly unlikely
Coming off medication is a retrograde step
If the body needs replacement thyroid hormone....it must have it
Suggest you follow protocol...
Maintain a steady dose ie 50mcg for 6 weeks then re-test the results will point the way forward....and I guess a further increase(s)
I suggest you don't over exert yourself on holiday that will give you a better chance of coping ....your metabolism is likely running low
Sorry this isn't the response you'd hoped for
Have the best holiday you can
I agree cut back to 25mcg for the holiday. Then recommence the 50mcg upon return
I lost a lot of time with my children through being undertreated. Enjoy the holiday. You don't get memory making time with your children back.
When I went to a holiday in Florida severaI years ago I cut back my levo to every other day.
The sunshine and different atmosphere was so good and the change of scenery, that I did quite well. I was actually glowing upon return.
I fell back to earth with a big thud two weeks afterwards....
hi Ockerdoc you may need to up your b12 to the Niceguidelines dose which is every day injections until symptoms subside. Look at PAS site on here. 1 dose a month may not be touching the sides. Also take with methyl folate 5mg a day . Good luck ….
Thank you.. my B12 was 767 (180-900) at last test so hopefully one a month should keep it topped up. I eat beef and eggs twice a day and eat a lot of dessicated liver.
Once on b12 jabs there is no need for further testing. The rate of B12 jabs should then be set by the level needed to keep symptoms at bay not by blood tests. I'm still injecting daily. If I don't I get numb feet. I'm over three years in!
wow everyday ! The injections give me vertigo so one a month is all I can handle. Same as the oral b12 gradually makes me feel ill the more I take it. I’m eating as many b12 foods as possible to make up for it. It must be a genetic thing because my mother has recently had a bout of 12 injections in 2 months which completely floored her.. she was bed ridden some days with the most horrendous vertigo.
Oh wow that sounds horrendous. Do you take a B complex? What form of B12, jabs are you having?I developed terrible tremors and weakness, could barely walk. The b12 jabs have made a massive difference.
I have hydroxycobalamin injections. I tried a liquid b complex which had b12 but had to stop then I bought one without b12 but felt rough on that too so I gave up in the end. Glad the injections are helping 😁
Sorry to hear that. I don't find the oral route helps re B12. Hence the jabs. But I do find a basic B complex with folate does help on top of the jabs . The complex B is capsules.
Unfortunately, you were probably at the worse time taking your thyroid. I know that 2-4 weeks can be grueling for many. Your body is adjusting and at the same time doesn't have enough thyroid yet. I am at 2 1/2 weeks on 100mcg and I am physically and emotionally all over the place. I know I have to wait it out for another few weeks.
I am not really sure what to tell you. Personally, I would probably go back to 50mcg. You will be ready to retest when you get back. You have your body very confused now. There is really no right answer. No one can predict how you will feel in 4 weeks if you return to 25mcg or go back to 50mcg. With thyroid, you have to just stay the course.
I hope I don't sound like I am lecturing you or being condescending. We have all been in your shoes and many still are. Probably most of us have played with our dose just trying hard to feel better. But, we have learned the hard way that we just have to stay consistent and give it time. It is VERY difficult and we all get that.
I hope whatever you decide, you have a great time on your trip. It sounds amazing. Give yourself some grace and know you may not feel your usual self, but you are in the process of healing and it will get better. Hopefully your family will be understanding that you are just not yourself right now.
Thank you HeartWoman yes I’ve gone back to the 50mcg and feel a lot better now. I’ve been wondering why I felt so bad those few days that made me stop taking the Levo and then I realised I had changed brands from Wockhardt to TEVA which I think made me feel so off. I’ve gone back to Wockhardt and I feel fine so I’m gonna stay away from TEVA in the future. I don’t think it’s a good idea to stop cold turkey and I’m learning to listen to my body with regards dosage etc. I know it’s gonna be a long road but hopefully I’ll get there. It’s a learning curve ! 😁 Thanks again.
Not sure if this can help too: I've had a difficult journey on Levo and found the following has really helped (all from the lovely women on here)
avoiding or reducing carbs right down has given me much more energy and less fatigue/brainfog
sublingual (under tongue B12) But along with
sublingual methylfolate (Not folic Acid) needed to get B12 working (see you take a form of liver - I also make liver pate)
avoiding Teva products
daily boosting of DOSE hormones for wellbeing and positivity (Dopermine, Oxytocin, Seratonin, Endorphine)
Hope your holiday goes well. Cheers Sarah
Thank you 😁 that’s good to know..I’m actually thinking of going keto at some point once I’m feeling a bit better.
Hi I didn't go keto but the carb reduction has so improved my life, and despite being undermedicated (I have no Thyroid) due to the way my system works and the need to protect heart, I feel better than I have for a long time and am losing weight on a week to week basis - lightest I've been for a long time. I don't know how old you are or if (like me) you were overweight but managing how our digestion works is key - esp if we are hypo or undermedicated. 🍩are no more alas but 🥂still exist but are earned. I wanted to manage rather than give up!
That’s great I’m glad it’s working for you..yes I’m 51 and reasonably healthy BMI about 24 so I could do with losing a bit really but I’m tall so it doesn’t really show..I used to be in the gym a lot but not so much lately ! 🤣 I’m hoping to get back to exercising regularly once I get to my ideal medication level fingers crossed..the b12 and Vit d injections seem to be helping me a lot.. I make my own liver pâté too with beef liver..it’s the only way I can eat fresh liver. But the desiccated is handy to have around. I used to love a glass of red wine but since I’ve been hypo I don’t feel like drinking so much. I’m hoping that’s going to come back when I’m properly medicated ! 😁🤞
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