My journey to hypothyroidism has been long and hard. But at the moment I have taken matters into my own hands and decided to take Levo in the normal way. i.e. starting low and increasing after testing every 6-8 weeks. I'd been on 25mcg of Levo since last June with a doctor who was dosing me very experimentally and it didn't work. I was all over the place. I need stability. So after yet another experiment that failed I've determined I had 2 choices. Either I stop taking thyroid meds altogether or I do it the normal way. I chose the latter.
I am due another blood test in 2 weeks time. I am on 50mcg a day. Most of the time I feel low mood, poor concentration, no motivation, joints hurt, depressed, no energy and poor stamina. I can't even walk very far and I used to walk miles. My legs feel like lead very quickly when I walk. So all of that I understand is fairly typical hypo.
I've tested my iron panel and found low ferritin and transferrin saturation % so I've been supplementing for a few months and need to retest about now. I tested Vitamin D and it was middling so I'm supplementing to get the levels higher. My B12 I tested with an active B12 test and it was middle of the range. I'm supplementing with methalcobalamin anyway. I don't have any meaningful thyroid test results to share until after the next test. Too many variables were going on at the last test point last year. But it's worth noting that so far, though 6 years of testing, there is no sign of Hashimoto's antibodies, although I will test for them again in my impending test.
My biggest struggle is understanding why I feel awful for many days in a row and then, like yesterday, I have a good day. Plenty of focus and feelings of happiness. Energy to work well and get things done. Legs springy and able to move at normal speed. Positive outlook and hope for the future. No brain fog. Then I get up the next day (today) and I'm back to the miserable, fuzzy, unmotivated blob I was before. Why is that happening? Is it a normal progression? Is my thyroid spluttering out more hormones on it's own some days? Has anyone else experienced this?
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FancyPants54
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I think we all get good days and bad days. I'm not sure anybody knows why. And, you are only on a small dose. What dose did you start on?
I'd be very interested to know what your doctor's 'experimental dosing' consisted of, and why it didn't work.
You say you're supplementing vit D3, but are you also taking vit K2 - MK7 and magnesium with it? And are you taking a B complex with your B12? These co-factors are very important to correct working of these supplements.
I started on 25mcg every other day and was kept at that for several months. Then it went to 25 every day, but with Sundays off and I felt worse in some ways. Then after another too long gap it was alternated 25/50 with Sundays off and I started to feel really depressed soon after taking each tablet and it would wear off in the evening. The days off would often feel much better at that point. My TSH went up to 7 from 4.5 during this time but my Free T3/T4 stayed more or less the same around the middle of the range. It was then suggested I try Nature Throid 1/2grain and I ruined Christmas doing that. Such awful anxiety. If I had been clear headed I would have known it was because the T3 was more than I could stand at the time, but I was a mess so I stuck to it for a month to see if it would settle. At which point I spoke to the doctor and she said it should not have been doing that so I must wean off.
By that point I felt so bad on it that there was no way I'd wean off it over a period of weeks so I switched back to 25mcg Levo and felt instantly a bit better. Certainly the anxiety had gone. Once that happened I knew right away that I should have started the Nature Throid at 1/4 grain, but that's a working brain and hindsight for you! I have used T3 on it's own in the past so I should have recognised the signs. Anyway, the 25 Levo settled things but I tried to wean off it as she had suggested, then I went more hypo because I was getting less hormone than I had. My skin dried right out and my fingers split and freyed and I felt a lot slower and unable to concentrate or move! It was at that point that I decided I had 2 options. Wean off altogether even though I had felt ill before I started and I had had moments of success with the Levo, or do it in the more normal way. Because I was seeing a private doctor for HRT and have a private prescription I'm not short of tablets so I can experiment. So I went to 50 a day and as I said, I'm due a blood test in 2 weeks.
I don't get many good days. Most of them are poor with the odd good one. Do you think that ratio might swing around to a more normal kind of life when I get more hormone into my system? I suspect I've been slipping into hypo for many years. Certainly it's been crashingly obvious something was wrong for 6 years but even before that I was slowing down a bit and things required more effort or if I pushed myself I would pour with sweat. My Nan was hypo.
I am not currently taking K2 (I have in the past) and I don't know what MK7 is? I take a thyroid specific B12 complex and supporting nutrients, a T4-T3 conversion supporting supplement and Adrenomax which contains all sorts of things. I use magnesium quite a lot in different forms.
Oh, and I'm 5'10" tall and weigh a terrible 19 stone now (thanks to whatever is going on) so to expect 25/50mcg of Levo to help me when taken just 6 days a week was pretty hopeless I suspect. (4 years ago I appeared tastefully nude in a charity calendar, which goes to show how fast and awful the weight gain has been. No one would have wanted me in the calendar as I am now!). I also run my own business and it involves a lot of quite heavy lifting and being up on my feet. I don't know how I'm still going really.
50mcg of levo is a starting dose and an increase of 25mcg every six weeks is in order until you begin to feel well and symptom free. If pulse/temp goes too high reduce to previous dose.
That's what I'm doing now. I've given up on doing what the doctor wants, as long as I can get the Levo that is. I'll be stuffed if she won't keep giving me my prescriptions because my actual GP ignored a TSH reading of 4.75 a couple of years ago even with the lab flagging it up!
I wanted to know if others experienced the swings of mood like I'm doing. Mostly miserable and slow and then occasionally feeling much brighter and better and more capable.
Hi! Yes I think these feelings are very typical of hypo. You have good days and bad days!
Once you are on the correct dose, you should begin to feel better. This can sometimes take many months, maybe over a year or so to get to get to this point. However, because Hypothyroidism is a lifelong condition and your levels will be constantly fluctuating, you must expect to get good days and bad days. This is normally the sign to get your bloods tested again.
I hope this helps. Ultimately we are all in a similar boat and understand what you are going through.
I think I just feel resentful because I've been messed about so much and treated badly. I started Levo last June and I'm only on 50 a day now because I decided that is what I would do! Before this current round I was put onto Armour by Dr Peatfield. He was lovely but he got really sick himself with some serious requirement for surgery at the point when I became over medicated and because I was new to the whole thyroid thing and I couldn't speak to him I was left floundering. I ended up coming off altogether. Later, after I learned a bit more I tried T3 only, but that made me worse, because I think I was over medicated but my signs and symptoms didn't show that so I kept increasing. When I first saw this private hormone doctor she freaked out over what I was taking and told me I must half it immediately. I did as told and actually then weaned off altogether. For a time my TSH was below 2, but last year it started to creep up which is why she put me on the small dose of Levo.
Talk about a mess! I resent being so dismal all the time. Wednesday I got loads done and felt good. Yesterday and today I could cry in a dark corner and not come out.
I used to always be outside. Come summer I went out when I got up and came in when it got dark, usually really dirty because I'd be doing some restoration project or gardening or something similar. I hardly go outside anymore. I don't feel connected to anything and I do myself in if I try to exercise or do any kind of manual job. All I do is sit inside and paint or colour or read. House is going to pot around me. I long for the time when I have some good days in a row. As it is I daren't go to bed on the rare good days because I know when I wake I'll be crap again.
Oh dear! I am a misery today. Thanks for the encouragement.
I've been swallowing supplements for years. I don't know if they do any good. Just feels like pouring money down the loo.
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