Good evening. I was diagnosed at thanksgiving along with needing vitamin d. I was a very active person, jogged every day, worked outside, and was never one to sit around. Before the diagnosis I became so tired and had to make myself do the things I normally did no problem. I also gained 9 pounds. After diagnosed I was prescribed levo (25mg) after about three weeks my body reacted very well. I noticed my hair not falling out as bad, I lost 10 pounds and went back to a flat tummy, my energy was back! It was amazing. A week before my blood work I noticed myself becoming tired again and achy. I worried it was the medicine not working, but my levels turned out to be right where they should be. But because I told the doctor how I felt a week before the blood work she felt I should increase the dose to see if that was what was going on... went to 50. After 8 days my body reacted terribly. Sure it was too high a dose because I had the chills consistently, very weak, achy, and diarrhea. My doc said it would be ok to immediately go back to the 25. I did and now on week three of the change... my body acts just like it did before being given any levo at all. I am slowly creeping up in weight(which I watch closely as I have managed to stay the same weight after losing 70pounds after having my son 11 years ago)... I still make myself exercise but it’s the fluid retention that is really bringing me down...
Can any of you relate to this issue? Is it possible my body is just trying to “regulate” itself after the changes with the dosage the last five weeks?... I hope and pray the 25 dose goes back to helping me. I am a pretty happy person- I want to stay active and not lose the person I am. The water retention is a real kicker though... and it makes me feel uncomfortable in my own skin. It’s like a “heavy” feeling... like after eating too much ice cream!(which I haven’t done in forever!, but I remember the heaviness it would put on myself... just feeling weighed down- not by body fat... but like sluggish and sad)
If anyone would like to give any helpful feedback I would appreciate it I have never reached out like this and hope to receive positive feedback
Thanks for reading
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Popeye11
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Your doctor was right to increase your dose to 50 mcg. 25 mcg is a very low dose, and it was great that it helped you in the beginning, but it was never going to be enough. And your body was telling you that by allowing the symptoms to come creeping back in.
Your 'reaction' to the increase doesn't really sound like a reaction at all, to me. It sounds mor like some sort of bug. Chills aren't really a symptom of over-medication, more like under-medication, and 8 days wasn't really giving it time to work, anyway. It takes at least six weeks for the increase to fully make itself felt.
It's very unlikely that going back to 25 mcg is going to help you. It's not just a question of your body getting used to it, or whatever, it's just too low a dose. You could try raising your dose more slowly, if it bothers you, but alternating 50 and 25 for a while. But 50 is actually a normal starter dose, unless you're very old or have a heart condition. So, it really would be a good idea to try and get used to it.
Sometimes when we start taking Levothyroxine your pituitary gland notices there is more thyroxine in your system and stops stimulating your thyroid to produce thyroxine. When I started taking Levothyroxine I actually started to feel worse before I felt better. You need to stay on 50mcg and then have a further blood test after 6 weeks and then continue to increase until your levels are right for you. Most people feel better when their TSH is 1 or lower and their T4 and T3 are in the upper third of the range. Everyone is different and I have been told my T3 is not high enough but I feel very well at the moment.
First thing is, do you have any actual blood test results?
if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Keep your D levels in optimal range will help keep thyroid levels from adjusting all the time but it is kind of common to have to adjust medication. Thyroid is sensitive to things you change good and bad, and stress. Chills etc not a common thyroid thing.
Popeye11, Lots of parts of your story are very familiar to us, and common experiences with starting out on thyroid hormone. It's common to initially feel better, but then to go back to how you were or start feeling worse on these low doses. It is a slow process to start feeling better on thyroid hormone replacement.
Both 25 and 50mcg of Levothyroxine are very low doses, and most people will not feel well on them. A low dose of Levo is enough to disrupt your own hormone system, but not enough to give any meaningful replacement. Often people will start feeling real and stable improvement once their dose rises above 50mcg.
I also find that when I adjust my own dose, all kinds of symptoms can happen in the first few weeks on a new dose. 8 days is just not long enough to get settled on the dose. When adjusting a thyroid dose, be as kind to your body as you would be if you had the flu. Rest in bed if you need to. It can be very disruptive for the body.
It's very possible you would have done fine on that dose if you'd stuck with it for the full 6 weeks. I find after about 4 weeks things start to settle down for me. If you've got an underactive thyroid then the only thing that will really make you feel better is to raise that Levothyroxine dose. The only other thing I'd say is that good vitamin levels can help, it's worth testing ferritin, folate, B12 and vit D and making sure they are optimal.
As others mention, if you've got any thyroid panel blood test results you can share them and members will advise.
Also take into account the different brands, many people don’t seem to tolerate switching brands if you find a brand that works for you try to stick to it. 8 days isn’t a lot of time to get the increase in your system but can be enough time for the fillers in the new brand to not agree with you.
Your post brought back a lot of what I experienced at the beginning of this journey. I remember how frustrated I was so you have my sympathy. Suddenly I couldn't keep up with doing my regular activities and I needed to call in to work I was so exhausted. The most frustrating thing for me was that I felt like I couldn't even think I was so exhausted. Initially levo helped, but then that faded. Initially vit D helped, but then that faded. Increasing my thyroid dose didn't make me feel better although my doctor has kept it pretty high and I feel better so it might have been one component. We added in T3 at my insistence which did make a difference that stuck. I also stopped eating wheat and started taking ashwaghanda, rhodiola and CoQ10. I take other stuff too for supplementation, but those are the three that seemed to moderate my worst symptoms. Every experience is different and I think you are probably, as am I, at the age where hormones are in flux. I don't understand what role that might play, but just getting through that stage is perhaps a part of feeling better for me and perhaps will be for you. Don't lose hope. There are a lot of things to try and a lot of things to read that may help you get back to rights. And it does take time for your body to respond to changes. A week is not long enough. I had stopped eating wheat for three months before I noticed that I didn't feel as bad and I still didn't feel great. It has been a process. I don't usually write on this site, but your post spoke to me and I hope that will be helpful.
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