Low dose Levo and now NDT causing depression

[FancyPants54]

Hi

I've been on a low dose of Levo 25/50 alternating, for sluggish thyroid since June last year. Started at 25 every other day, progressed to 25 every day and then the 25/50. Noticeable improvements around August (able to ride my bike again which made me ridiculously happy). But towards the end of autumn it started that within 30 minutes of taking my morning tablet, I would become very tired, lethargic and depressed and that would last for hours. Hard to force myself to dress and get out to work, often not arriving before 1pm (I work for myself). Then around 4-5pm the fog would clear and I'd be moving around with clarity and energy again and have a great evening, laughing and generally feeling like myself.

My doctor (private and treating me with HRT) switched me to NDT at Christmas because I had some symptoms that she felt showed Levo wasn't agreeing with me (rashes, itching at night and major out of the blue nosebleeds). I started Nature Throid at 1/2 grain a day which was probably a bit higher dose than my alternating 25/50 had been. Felt good on the first day but after that progressively more anxious and nervous and unhappy for a few days. Then it settled for a few days and now the depressive pattern has recurred. I thought perhaps my dose was too low, so after 3 weeks on 1/2 grain I increased it yesterday to 3/4 grain. Big mistake. Much worse depression and tiredness and general misery. Hurt all over too. Barely cleared until much later and then it was wobbly.

Today I've not taken any and feel much better. Brain fog much less. Mood vastly improved. Energy not up to a lot but better than yesterday.

Has anyone else experienced this? I'm at a loss to know why I feel worse taking such a small amount. My iron levels were OK apart from ferritin which was a bit on the low side. I've been supplementing for a couple of months now. My active B12 is good. My vitamin D was dropping a little so I'm back to supplementing that. None of these levels was really likely to cause an issue apart from perhaps the ferritin, but I should be getting that level back up again now.

Not sure what to do tomorrow. Perhaps drop to 1/4 grain for a couple of weeks and see how that goes. I really did feel the T3 on that first day. It made me feel a bit jumpy at first but wore off and gave me a great Christmas Eve. Just a shame it ruined the rest of Christmas for me!

[Jazzw]

The thing is, you can’t supplement the action of your thyroid gland. When you start taking synthetic thyroid hormones (or NDT), the hormones you take become a replacement for those you make yourself. So the amount you’re taking isn’t as much as you need - but it’s enough to stop your own thyroid from producing any of its own. You need more NDT.

[SlowDragon Administrator]

You were on tiny dose of Levothyroxine. Not surprised you felt tired.

50mcg is only standard starter dose. Normally bloods retested after 6-8 weeks and dose increased by 25mcgs steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Do you have results and ranges from before starting on Nature Thyroid, if so can you add them

Essential to know if you have high thyroid antibodies, this is due to autoimmune thyroid disease also called Hashimoto's

Also ask for vitamin D, folate, ferritin and B12 to be tested. Often too low, especially if been under medicated.

[FancyPants54 in reply to SlowDragon]

Hi, I know about the test ranges for iron. vit. D, B12 etc. I mention them in my post. I am happy they are not the cause of this, I understand where they should be. I have researched thyroid a lot in the past. The only possible issue is ferritin but I'm working on that and it wasn't a disaster. I have in the past self-medicated with both Armour for a year and T3 only. Neither were a disaster but neither really helped a lot either! That's why, when I saw this doctor for HRT, I decided to let her help me her way. For 2 years my TSH was around 1.5 and not an issue. But it's recently started to rise.

I don't have the test results from June when the doctor said I needed some thyroid help, although I recall a TSH around 4.5. I have results from August after very low dose of Levo for 3 months.

TSH of 4.40 (0.35 - 4.50)

FT4 18.2 (range 11.0 - 26.0)

FT3 4.4 (range 3.9 - 6.8)

Then again at the start of December when my dose was a little higher, but not much (alternating 25/50)

TSH of 7.15

FT4 18.2 (range 11.0 - 26.0)

FT3 4.6 (range 3.9 - 6.8)

In the past my blood tests did show antibodies were not an issue, but these 2 tests didn't show those. I will get those checked again.

What this shows to me is that I'm taking the medication but not seeing any improvement because the dose is too low. But I really don't understand the pattern of depression I had started to get that I originally posted about.

[marsaday]

You need to post your blood results.

You are not on to small a dose. Small doses will compliment your own production.

For me this sounds like a mismatch with thyroid hormone and cortisol,

This happened initially as you moved into autumn and this is the time when cortisol levels drop.

It is very important that you say you felt worse after taking the t4 in the morning. This is important because your body suddenly has more thyroid in the system but it reacts badly to it.

I think this is because you don’t have the correct cortisol level to suck the thyroid into the cells. Later on you feel ok and this is because the thyroid and cortisol are more in balance.

This is a hard to understand problem for many thyroid patients.

Try taking the thyroid meds at bedtime to try and improve the thyroid/ cortisol balance.

[FancyPants54 in reply to marsaday]

Hi

I've put my results in the reply above your comment.

I've not read what you say above anywhere else. But there was something going on there. I have wondered about taking meds at night but am afraid I will doom myself to a night of wakefulness.

Can you point me at any information backing up what you think about cortisol?

[marsaday in reply to FancyPants54]

Your Ft4 is in the top third of the range, so this is good. Ft3 is lower in the range, so not so good. TSH is high at 7, but better to focus on the Free figures.

You should try more T4, but already your Ft4 is getting higher up the range so my worry is you are someone who is just going to consume the T4 and it will sit in the blood and not go into the cells. Your Ft4 will rise and the TSH will still be higher. If this is the case then the issue is cortisol and not having enough to take the T3 into the cells.

If you are unwell for a long time and the doctors are not getting you better, then often the only person who can help is yourself. This will involve experimentation with meds and times and doses. Once you take control of your health problems it is surprising how much progress you can make, but you have to be brave at times. Try taking the T4 at bedtime one time. If you have a bad night, so what. Try it again. After a few times you will understand if this agrees with you or not.

It helped me a lot, but i really noticed this when i had to take my T4 one time in the morning again. That day i was so much more tired. I always take my T4 at bedtime now.

I don't have any links off the top of my head.

[FancyPants54 in reply to marsaday]

I've switched to NDT now (Christmas). 1/2 grain a day. Also taking it in the morning. I will give it a go at night. I had wondered if the T3 in it might help my overnight body production of hormones because I don't sleep restfully and feel there is something wrong there.

For a time I did the CT3M even with high morning cortisol and I slept wonderfully after taking that very early morning T3 dose. If T3 were not so expensive I'd prefer to just take a little of that.

Something else I can't seem to understand is that back in November when on Levo only, I felt so awful one day (morning depression lasting until around 3pm when it lifted and left me feeling fine) I didn't take my dose the next day. And I had the best day I've had in a long, long time. I was buzzing with energy and fun. It was a great day. So I thought I'd just stop taking it. But over the course of the next few days I just felt more tired and miserable and eventually just took another tablet. I can't understand why I felt so good that day.

[LAHs]

You did not say exactly what time of day you were taking your NDT. This may be a little too simplistic but it might be worth thinking about. The T3 (in NDT but not Levo) has a half life of about 7 hours, if you are taking the NDT first thing in the morning (empty stomach) one hour before breakfast and if you are not feeling good until mid afternoon then the T3 is not agreeing with you, i.e. when it is mostly used up you begin to feel well. Most people feel well when they first take the T3 containing meds in the morning and then flake out mid afternoon and fall asleep early evening when the T3 is all used up. If, on the other hand you are taking your T3 in the afternoon, this would explain why you feel good in the afternoon then evening.

There is another factor which might be affecting your outcome and that is your cortisol cycle. You can get a 24 hour saliva test which will tell you when you have high cortisol and when you have low cortisol. Perhaps that rhythm will correlate with your mood and feeling of illness then well being. You will then know that it is not the thyroid system but the adrenal system which is out of whack.

Speaking just for myself I have never really understood why people would take T3 containing meds at bedtime. T3 is supposed to liven you up, it's effects are all used up by dawn. But, what do I know, lots of people say it works for them.

Interesting problem, let us know how you get on. Oh, and post some of your blood test results, it helps a lot.

[marsaday in reply to LAHs]

T3 at bedtime can stimulate you but a smaller amount is a good addition.

T3 and t4 are naturally made when we sleep and replicating this artificially can help stimulate cortisol production

[LAHs in reply to marsaday]

Oh, good point. I never knew about the cortisol production. That's a very important factor for feeling well.

[SlowDragon Administrator in reply to marsaday]

Interesting

I take divided dose T3. So small doses

I find they make me sleepy. I had expected the reverse

Also find taking Levo at bedtime significantly better

[marsaday in reply to SlowDragon]

So a small bit of T3 with the T4 at bed time is likely to really help tune you up.

If the T3 is making you tired it is likely the interaction with cortisol is not working so well. Do you have too much cortisol in balance with the T3 or is there to much T3 in relation to the cortisol ? These questions are critical and for thyroid patients i think this is at the heart of why people can find it hard getting better.

It is tough to fully understand what is happening, but trial and error can help guide you.

Cortisol has its own daily flow and is higher in the morning and lower in the afternoon. I find T3 works better in the afternoon as opposed to the morning.

[FancyPants54 in reply to marsaday]

Do you take your thyroid meds in the afternoon then or at night?

Back last autumn I had a problem with the Levo brand. Cut a long story short the new prescription Teva didn't agree with me and the chemist got me some of the original brand for me but there was a week to wait. I took a 3rd brand (Mercury) for that week, it was OK but not great. On the day I picked up my new prescription I'd not taken any Levo and I felt horrible. I drove to work and took the first tablet of the new prescription, around 1 or 2pm. Almost immediately I felt much better and by the time I got home from work my husband said I was like a new woman. Next morning I took my tablet and didn't feel so good and so on again... Have I missed a big clue here?

[marsaday in reply to FancyPants54]

YES!

This information is so important and all people having issues with thyroid will have some positive experiences at different times of the day during their discovery but I think they miss these clues.

Try the different times. Maybe break up the dosing of t4. 25 t4 in the afternoon works wonders for me and I will change it up sometimes. I am generally well so stick to bedtime dosing but if I have a match I will try an extra bit of t3 or t4. The t4 tends to work better believe it or not.

[FancyPants54 in reply to marsaday]

I'm on 1/2 grain NDT now. I also have a telephone appointment with my hormone doctor tomorrow. You have given me great food for thought and to talk to her about. I know she doesn't want me to take enough thyroid hormone to take over from my own gland. She wanted to add a bit. I think cortisol is my big issue.

I'm finding the NDT hard going to be honest. The T4 was easier on my system but I had a few side effects. They may have been coincidences of course.

The thing that bothers me most about night time or even daytime dosing is having to leave 2 hours before and 1 hour after no eating or drinking. Do you do that? If I took my dose at 1 or 2pm I'd be lost without tea between 11 and 3!

[marsaday in reply to FancyPants54]

I pay zero attention to taking my t4 with food.

It has no effect on me at all. So I can have bedtime food and my meds.

When I dosed at breakfast I would take the tablets with my food.

We are all different. Some people are greatly affected if eating near meds. If you are one then yes you need to think a bit more about it. But do you know if this affects you? Again trial and error will show you the way.

Dr Blanchard in the USA identified a group of patients who put on weight with t4. The solution to stop this was to have them take the meds with the main meal.

[FancyPants54 in reply to marsaday]

I don't know if I would be affected or not. I've just waited an hour before breakfast because that's the "normal" advice. I have a physical job and it's cold in winter. Not having tea and the ability to eat would be difficult, and I love a milky drink at bedtime.

That day I described taking a tablet in the afternoon I didn't think about food or drink. Just took it.

I really appreciate your comments. They may not be right for me, but they give me something else to try and you seem to agree with the doctor that if the dose is low enough, it can be used as a supplement rather than a "take over" hormone.

[marsaday in reply to FancyPants54]

Some info from Dr Myhills site. She has also read Dr Blanchards book. Reading this info tonight has just pushed me to try tomorrow taking my T4 not at bedtime, but at dinner time. We must always try out new things and i haven't tried this time of dosing, but it ties in well with my good experiences of taking 25 T4 in the late afternoon/early evening before a match. Oh, i am excited now as i reckon this will be even better for my overall metabolism.

Timing of dosing

I have learned much more from consultant endocrinologist Dr Kenneth Blanchard's book "The functional approach to treating hypothyroidism". (Amazon.co.uk link to "The Functional Approach to Hypothyroidism". He makes many useful clinical points:

Thyroid hormones should be taken with food - he observes that cravings can be triggered by thyroid hormones on an empty stomach

T4 (thyroxin) is slow acting and "base loads". It is the night hormone - we should split our daily dose into two. The evening dose should be taken with supper which should be at least 4 hours before bed time.

By contrast T3 is the day hormone that wakes us up.

Our requirements change with the seasons - in Nature TSH falls in winter so levels of T4 and T3 fall - this puts us into semi-hibernation and allows energy conservation by causing mild fatigue and depression with greater need for sleep. The reverse is true for the summer. In modern times with food and warmth aplenty the imperative to do this declines. However some people need more thyroid hormones in winter to prevent severe fatigue and depression. In this event Dr Blanchard suggests "jump starting" followed by a different maintenance dose - so for example in the Autumn someone taking 100mcgms of T4 would have a jump start of 150mcgms for 3 days then maintenance dose of 110mcgms. In the Spring one would do the reverse - stop T4 for 3 days then return to the usual 100mcgms per day.

drmyhill.co.uk/wiki/Thyroid...

[FancyPants54 in reply to marsaday]

I've read what she had to say and am looking at the book on Amazon.

Please let me know what happens tomorrow after you change your dose. I'm excited to hear what you find out.

You play sport :-(. I am so sad that I have had to give everything up that I loved. I was a hoop dancer, I loved to walk and ride my bike. I can't do any of it anymore. No energy and no stamina. Yet my thyroid levels might be low, but they aren't terrible so feeling as I do seems disproportionate to me, which is why I think cortisol is playing a huge part.

I'm going to switch to night time dosing and sod the food thing while I try it out. I'll wait for the weekend though.

[FancyPants54 in reply to marsaday]

Hi Marsaday healthunlocked.com/user/mar...

Did you move to taking your medication at tea time? Did it help?

I've been taking my 25 Levo at bedtime for a week now. I feel a lot better during the day for it BUT I can't go to sleep or sleep very well, keep getting up for the loo, which I didn't do before. It's frustrating me because the daytime is much improved. I'm not sure how to overcome the sleep issue. Perhaps I'll get used to it over time. But I'd like to find a better solution because I'm getting tired now.

I think I will start moving it forward in 2 hour chunks to see what happens. I'd love to know how your experiment went.

[marsaday in reply to FancyPants54]

No help and was worse. I was very surprised.

You have to try all these things out though if you want to make improvements.

You will just need to experiment with your timing.

[FancyPants54 in reply to marsaday]

You take the bulk of your T4 at bedtime I think don't you? If so, perhaps you could split it and take some at tea time and some at bedtime?

I'd be jumping up and down with excitement by the change from taking Levo at night if I could only go to sleep!

[marsaday in reply to FancyPants54]

Yes but bedtime dosing works fine for me. I was interested in trying what dr B was recommending, ie dosing with your evening meal

[marsaday in reply to SlowDragon]

Reading your bio, i would have stayed at 125 T4 and introduced T3 in much smaller quantities.

I think it is a big mistake patients introducing T3 and dropping the T4 at the same time. It confuses the body and can cock up what stable metabolic rate you had. It can then confuse as time goes on as to how the T3 is working.

So using 2.5mcg T3 (1/8the tablet size if on the 20's) is the better starting dose. Initially just once per day and then increasing.

We make about this amount per hour and so it fits better with our own production as well. So you get lees chance that the cortisol get sucked up to quickly and the adrenals can react a bit better and supply more cortisol.

[SlowDragon Administrator in reply to marsaday]

I would definitely agree on the "don't drop the Levo dose"

Unless you have high RT3 or over the range FT4

I just followed my Endo's instructions

He wanted 25mcg drop in T4 and 2 x 5mcg T3

Though for first week I did start with just 12.5mcg drop in Levo and 2 x 2.5mcg T3

I am now 8 months later back on original dose T4 plus 20mcg T3 (1x 10mcg, 5mcg x 2)

Initially I was zonked out after each dose T3, but don't really notice now.

The difference is astonishing. From being virtually immobile to daily walking or gym for hour, plus completely normal daily activities

I have severe gluten intolerance, confirmed by endoscopy. Plus Heterozygous DIO2 gene variation. T3 was doubled when that was found out

[FancyPants54 in reply to marsaday]

I was never on 125 T4. My dose was 25 one day and 50 the next. I switched to 1/2 grain Nature Thyroid at Christmas. I've had a lot of anxiety with it.

[FancyPants54 in reply to FancyPants54]

Or perhaps marsaday was replying to slow dragon not me regarding dropping T4 and adding T3?

[SlowDragon Administrator in reply to FancyPants54]

Yes marsaday was replying to me

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Please post you latest blood test results with the ranges.