The damn peaks and troughs

[Jamima]

I wonder if this might resonate with anyone. I'm currently self-medicating for what I think is secondary hypo, 10 mg Hydrocortisone first thing and 50mcg Levo at bedtime. It's very early days with the meds but the hydrocortisone had an almost immediate positive effect. For the past 3/4 years I have had a definitive 'pattern' daily and I'd love to find out what it is, and how I can alleviate it.

On waking I usually feel groggy, almost hungover, slow, brain fogged etc etc. I usually have a coffee in the morning and then theres 2-3 hours of feeling worse, more foggy headed, unable to link thoughts, just rubbish. At 2pm, it's this exact, I start to feel better only to be followed by a 3-5pm slump. My eyesight goes blurry in the mid afternoon. At 5pm everything changes, it's almost exactly 5pm, I start to feel more bushy tailed and continue to feel better until 11pm when there's a big blast of what feels like adrenaline, it leaves me very clear headed, but jumpy and I can't sleep until at least 1pm. I sleep well and then the whole thing repeats the next day.

My question is, is this a thyroid or adrenal malfunction, or both? I have felt slightly evened out since starting the hydrocortisone, less obvious ups/downs. I'd really like to find a way of levelling everything out.

Thanks in advance.

[jrbarnes]

Yes this was my pattern as well and it's a thyroid issue for me and I know this because there were a few times I reached a perfect spot on natural desiccated hormone and it was like night and day. When my thyroid hormone is unbalanced it really affects my adrenals. My usual pattern is to feel sluggish in the morning, slow and crummy feeling until 9pm but more functional closer to 6pm, when magically I start to feel better at 9pm and then feeling my best around 11pm. The worst slump between 3-5pm. All the symptoms you describe sound like what happened to me when my T3 was low. I currently take 1 1/2 grain NDT and 20-25mcg T3. When my thyroid hormone is low it affects all my hormones. I know something is not right with my levels when I'm not getting tired between 11p-1230am.

[Jamima in reply to jrbarnes]

Oh that’s great, well, not great for you obviously, but it sheds light on what might be happening. I’ve only just started levo again after a 7 week trial earlier in the year ended with me feeling really unwell at 7 weeks but I think it was because my adrenal function is low. I’ve added in a small dose of hydrocortisone this time and hope I’ll be able to continue with the levo. There’s no doubt the adrenals are involved with me. I haven’t tried NDT and I do seem to convert well - is there any other benefit/pitfalls over levo?

[jrbarnes in reply to Jamima]

Well I think the benefits of NDT vs Levo will depend on how well you respond to Levo. NDT and T3 is great for people who can't get enough T4/T3 conversion on Levo alone but you could end up doing just fine on Levo, however 50 mcg is very low. If your adrenal glands are able to respond with adequate cortisol I'd see about increasing your Levo.

[Jamima in reply to jrbarnes]

Thank you, I’ll continue with things as they are for a couple of months and see how the ups/downs go. I appreciate your help.

[C70rol in reply to Jamima]

hello Jamima,

I have the same peaks and troughs as you, and I’m sure I need to take some more thyroid (Armour), as a recent blood test has showed

The trouble is my Adrenals are low after using hydrocortisone which sent me up to a very high level, ((after a Saliva test), so I had to come all the way down again (slowly), and it placed my Adrenals into a lower position than when I started taking the hydrocortisone!!!

So I’m now in the middle of raising Adrenal meds again. 😱

But I’m desperate to raise my Armour too. !!!

My strongly recommended advice to you is to take regular Saliva tests, to keep an eye on what the hydrocortisone is doing. Oh , and by the way I only took 8mg hydrocortisone!

[Jamima in reply to C70rol]

Ah, that’s interesting. I’ve reduced my HC by half today as I felt it was too much yesterday and I wonder if it’s because I’ve introduced levo. It’s all so bewildering but I’d rather go slow than end up pushing things to high. I’ve got a regenerus saliva test here, do I take the test while using the HC to get a picture of what it’s doing or do I stop HC for 24hours?

[C70rol in reply to Jamima]

I assume yesterday was your first day for the HC

If you’re introducing the levo at the same time as introducing the HC to your system, it may well be difficult to see which one is doing you good!!!

Yes, every time you take the Saliva test , DON’T stop the HC and make sure you write it on their form!

I also go low and slow with everything, as I’m also quite sensitive.

[Jamima in reply to C70rol]

Thank you C70rol. No, yesterday wasn’t the 1st day, I’ve been trialling HC at 5 mg for about a month but upped it to 10mg about a week or so ago. I introduced the levo around a week ago. Something has definitely changed so I’m going to keep the HC at 5mg and see how it goes. Thank you for the testing info.

[C70rol in reply to Jamima]

dropping the HC to 5mg is better and safer than the 10mg. I was amazed when I saw how quickly my cortisol shot up on the regenerous graph, with just 8mg of HC.

I don’t think I took my first Saliva test until about three months after starting and my adrenal result line was twice as high as our optimal level.

I have done a fair bit of adrenal raising since my last Saliva test which showed the HC now well out of the system, but the adrenals lower than it was before starting on HC…….

what I’d like to ask you is how awful did you feel when you increased your thyroid on a low adrenal figure. As I want to try and add a very small amount of my Armour, as it’s really needed. I’m quite low, but I don’t want to be awful at Christmas, as I’ll have a full house, and that will probably be about 6 weeks time!!!!

[Jamima in reply to C70rol]

Yes, even after halving it yesterday, I can feel the difference. I woke bright eyed today, that’s not happened in years, I mean 3 years of waking with a ‘hangover’. So it’s working and I can feel it. I might not take it today and keep the dose at 5mg if I feel I need it.

I felt really unwell, very lightheaded on standing - a few times I had to grab onto something as I thought I was going to keel over. Very foggy and tired, heavy legs and weak arms. It may well be that my own adrenal output has increased since then as I’ve also introduced a very low HRT dose so things are slightly different. I can feel the difference now and back then I only started to feel unwell when I tried to raise from 50 levo, with no adrenal support. I’m also splitting my dose of levo which I didn’t last time.

It’s interesting how different it feels this time, I’m glad I have the HC as support if needed but also very aware of it going too high.

Please don’t rely on me for guidance, I’m a complete newbie, but these are my findings, and there’s no doubt HC is playing a part. I’m watching it carefully.

[Jamima in reply to C70rol]

One small thing I've also noticed over the past few days - puffiness. Mostly in my face - I had the same with adrenavive but much worse, so I know it's the cortisol causing it. It's not alarming in any way but there's no other explanation unless levo does that?

[jamesal0 in reply to jrbarnes]

yes agree. if i feel exhausted at 3pm-5pm i take an extra 30mg ndt.

[Hedgeree]

Hi Jamima,I was wondering how you were getting on. I also seem to follow a daily pattern though slightly different to you and jrbarnes.

Usually the mornings I feel tired but ok. The afternoon is when I feel nauseous, dizzy and unwell. often starting around 2-3pm then I feel ok by 6 or 7pm but then I start to feel tired through the evening.

When it comes to trying to sleep about 10 or 11pm I then feel very clear headed and wide awake so find it difficult to sleep usually around 1-2am and don't sleep through but am up awake 2 or 3 times a night.

After I had my partial thyroidectomy in August I was prescribed levo at 50mcg by the endo nurse but 25mcg by the endo (two separate clinics!) As I feel I've been hypothyroid since a teenager I was nervous of taking levo so opted to start low and slow. So I split the 25mcg into tiny pieces and started very slowly. When I tried to increase it I started getting chest discomfort and felt unwell so went back to taking a couple of pieces each day.

Even though I was taking such a tiny amount I had two days of clarity at the start which was brilliant. When I started to feel more hypo again I increased the amount. I've tried to split my levo and take some around 4am and also in the afternoon around 12. This seems to help as I'm tolerating it well and much of the afternoon nausea has lessened. Although I've still a long way to go as I'm only on 25mcg.

If you struggle with the levo again it may be worthwhile starting very low. It might not work for you that way but it may be worth a try.

Best wishes.

[Jamima in reply to Hedgeree]

Thank you Hedgeree - that’s really interesting and fits with some reading I found on circadian rhythms of tsh. Like all hormones, we have pulses throughout a 24 hour cycle and I wonder if these ‘dips and troughs’ are somehow related to that? I’m going to try splitting the dose and see how it goes. Thanks again, always great to hear how others manage with a similar problem when you feel it’s only you.

[Hedgeree in reply to Jamima]

I do think it's worth trying splitting your dose. I'm sort of attempting to follow a circadian rhythm for FT4 though very roughly. The endo nurse said no start on 50mcg but I've just done my own thing and I'm glad I did. Good luck.

[Jamima in reply to Hedgeree]

Thank you, I’ll start with tonight’s dose and split it. It seems to make sense to follow the symptoms, and mine are very obvious throughout the day. It’ll be interesting to see if it levels things out a bit.

[waveylines]

I used to be like this and had to split my ndt. I even tried using Paul Robindons technique of timing when I take my first dose of ndt earlier to use the Circadian cycle, with some sucess. Actually what turned out be the problem was low B12 though in range. Moved into regular B12 injections and going g strictly gluten free. I now take my ndt in one dose as I wake and don't ha e to dpmit it anymore.

[Jamima in reply to waveylines]

Thank you waveylines. My B12 was good last time I tested and I’ve supplemented since then so I doubt it’s that. I’m going to try splitting and see how it goes. If I decided to try NDT how do I find a supplier?

[waveylines in reply to Jamima]

PM me. Not allowed to discuss supplier on open threads.

But if you're doing it with a script either private or NHS if u look on Thyroid UK they have a list of suppliers. On the NHS Armour or Erfa is the choice.

[PixieElv]

Hi

I have secondary hypothyroidism and had/have similar problems. Splitting my NDT has really helped with with tiredness during the day, but it hasn’t helped with the not sleeping at night. My cortisol is sky-high (during the day and night) and I am going through some test to work out if it’s Cushings, but I don’t think so as I have none of the other symptoms. Levo didn’t work for me, neither did T3, but NDT was a game changer.

Try splitting your Levo or try NDT and split that. I dose 6am, 11:30am and 5pm and that keeps me going.

Best of luck

[Jamima in reply to PixieElv]

Thank you PixieElv, that’s really helpful. I split last nights dose so I’ll take it from there. I want to give the levo at least a couple of months and if I end up where I did last time, I’ll give NDT a shot.

[PixieElv in reply to Jamima]

I’d recommend givgoing Levo at least a good 6 months. You’ll know then if it works or not.

[Jamima in reply to PixieElv]

Many thanks, I’ll do that.

[Starlet97]

Yes I am the same most days my trough 3.30pm to 4.30. I have hashimotos have you been tested for anything? I would think that it would be dangerous to self medicate as the thyroid affects everything in your body. Please get a test.

[Jamima in reply to Starlet97]

Thank you Starlet, I’ve been thoroughly tested by my endo.

[Starlet97 in reply to Jamima]

That's marvellous. Hope things improve for you soonx

[Poniesrfun]

vox.com/2016/3/18/11255942/...

This article pretty much sums up most of the research I've read. I've been a night owl since I was a child - I don't think I was ever on time for school. I would fall asleep on the commode in the morning.

I think this affected many of m y job choices throughout life, the last two as a paramedic (24 hour shifts) and nurse (night shift). When we had shift rotations where I had to go in early I simply stayed awake for 24 hours before the first day of rotation.

Twenty four hour cortisol testing showed an "upside down" rhythm. And, for the past several years this has been confounded by having no thyroid and balancing my NDT throughout the day. Being retired I am, for the most part, able to stick to my night owl schedule. Living in a desert, I feel pretty free to sleep through the heat of the day and enjoy the night time coolness. Staying up all night to enjoy the early morning before the sun comes up works, also. I do think our health suffers when we try to alter our own body's inherent rhythm. I've always wondered, also, how this affects things like anesthesia and surgeries.

Patti in AZ

[Poniesrfun in reply to Poniesrfun]

This article has even more interesting info and some ideas for dealing with "morning" lows. blog.rescuetime.com/not-a-m...

The main reason I feel these are important is that it's not always about our thyroid.

Patti in AZ

[Jamima in reply to Poniesrfun]

Thank you Patti.

[Jamima in reply to Poniesrfun]

Thank you Patti, that's really interesting. I too have always been an night owl as were most of my family, and indeed my own boys. I don't have an upside down cortisol rhythm, but a slight uptick in late evening which obviously shouldn't happen. Whilst I am a night owl, what's happening now is not the norm for me and these 'high' and 'lows' are quite extreme. I'm tired but wired in the late evening and when I do sleep, I sleep well and prefer to sleep in the night hours. Contrary to your geography, winter where I am gets severely reduced daylight, sunrise at 8am and sunset at 4pm in the winter, and sleeping during the day would be awful for daylight exposure which I find I need .

I agree that falsely altering our body's own inherent rhythm is damaging to our health in all sorts of ways, but my usual pattern was bed at midnight and sleep for around 8 hours then a normal day pattern. I don't know if optimising my thyroid will restore this, it's really just mornings up to lunchtime which are the worst, the dips I can deal with but I'd prefer not to have it.

There's also the possibility that my age (60) is some sort of turning point in terms of sleep an circadian rhythm disruption, I know that age does have that effect. Only time will tell I suppose.

Thank you for this, it's really interesting.