Nothing makes sense to me anymore - help please... - Thyroid UK

Thyroid UK

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Nothing makes sense to me anymore - help please...

Hidden
Hidden

Hi everybody,

I was here on the forum before and disappeared as I was just fed up with everything :(

I haven't been well for a long time now and I wonder if anyone could shed some light...

Quick recap: been on 4 grains of NT, then reduced as all results were either high and over-range (I had occasional palps back then and oily skin with acne) It seems my TSH then was steadily climbing to suppression even though I have been reducing.

Results end of May: TSH = 0.006, FT3 = 5.2 (2.63-5.7), FT4 = 12.8 (9-19). Felt just okay, but had insomnia, racing thought, bits of anxiety and tiredness.

Decided to reduce by 1/4 grain...oh boy. 7 weeks later: TSH = 0.181 (0.35-4.9), FT4 = 10 (9-19), FT3 = 3.11 (2.89-4.88). For the first time in a year - I slept! Depersonalisation disappeared, but I was feeling down, put a bit of weight on (4-5 pounds), became tired in a different way to before...

As there is no dose between 2.25 and 2.5 I have decided to add 25 mcg t4. 2 weeks later insomnia and muscle twitching is back. I stop, immediately can sleep and feel more relaxed. few days later on 2.25 grains I start to feel super-tried and crashing. I started 2.5 grains 6 days ago and 3-4 days in - insomnia, burning skin, a bit wired, energy high, but not feeling right, twitching it back...

I checked my results when I was diagnosed with Hashi in 2013.

TSH = 2.19 (0.27-4.2)

FT3 = 4.7 (3.1-6.8)

FT4 = 16.15 (12-22)

ATPO >600 (<34)

FT3 and FT4 were just below mid-range, over 40% level, but equal and it doesn't seem I ever had issue converting.

Part of me wants to stop meds or reduce to 1 grain and unsuppress thyroid. I honestly wouldn't mind going back to baseline and start again. I never had an adequate dose of Levo (pretty much always was on 25 alternating with 50 mcg).

Should I go back to Levo? Should I stop? Should I go through hell of increasing to 2.5 again?

Super sad and losing hope :( Thank you for reading my long post... x

32 Replies

Difficult to say if you had a conversion problem on levo, because you weren't taking enough. As the dose increased, conversion could have got worse.

Have you considered adding a little T3 to your 2.25 grains of NDT, rather than levo?

Hidden
Hidden in reply to greygoose

Thanks for your response grey x maybe this will help: when I started taking 25 mcg + 50 mcg back in 2013 (5 days a week for 25 mcg, 50 mcg for 2 days...), my labs came back like this: TSH = 0.73 (0.28 - 4.3), FT3 = 3.03 (2 - 4.4), FT4 = 1.59 (0.93 - 1.7), ATPO > 1000 (max 5.61), I was not feeling the worst... And I remember that in 2015 I felt pretty good on 1-1.5 grain of armour, but then doc asked me to go up to 2 grains and was switched to Nature Throid 3 grains (!) straightaway and then 4 (!!) without any labwork, I just trusted the gp...3 months later, palpitations, feeling weird, anxiety, acne and up until now, 1.5 years later I'm still poorly.

Fast forward to now:

Of course, I will consider any scenario, but I am not sure how much I should add (I have a box of Thybon t3 20 mcg, which I have never used).

How dangerous is stopping all or only staying on 1 grain? If my TSH unsuppresses, I should produce some t4 and some t3 maybe? I just sometimes wish I could start from scratch :( sorry for being moany, wanna cry a bit today x

I would also like to get pregnant soon, but can't being this way. I'm 34.

greygoose
greygoose in reply to Hidden

Oh dear. That doctor really knew nothing about thyroid. Increases in NDT should be 1/4 grain every two weeks. He made you increase by too much and too soon. Not surprising it didn't do you any good.

If my TSH unsuppresses, I should produce some t4 and some t3 maybe?

That is doubtful. Certainly not enough to make you well, you would still need to take NDT or something. Your thyroid is being slowly destroyed by your immune system. Trying to raise your TSH by decreasing your dose would only make you ill.

It's not dangerous to stop everything and start again, but you wouldn't enjoy it. You would feel a lot worse before you feel better.

When adding T3 to NDT or T4, always start on a low dose and work up slowly. So, 1/4 tablet to T3, increasing by 1/4 tablet every two weeks until you either feel better, or get to one whole tablet. Then, hold for six weeks and retest.

Hidden
Hidden in reply to greygoose

Thank you grey, that's very helpful x I just so wish I could start again :(

Do you know why I could react so badly to tiny increases of ndt or t4? Also, same when decreasing - insomnia etc. It just doesn't make sense to me :( although I think some people experience the same. My vits are above midrange only with ferritin being lowish, but that was the case all my life and never had issue increasing back then...

greygoose
greygoose in reply to Hidden

A low ferritin would make it difficult to increase your dose. Have you tried to raise it? Which vitamins have you had tested, and what were the results?

High/low cortisol could also be a problem. Have you had any sort of test for that?

Hidden
Hidden in reply to greygoose

I raised it already a good bit (ferritin), I will keep taking it. I had lower ferritin before and was able to increase np...so it puzzles me. Cortisol was high on all 4 readings this January, but not sure why it was high, maybe overmedication? I will need to check tests, but from memory vit D was 85 in a range up to 125, vit b12 was almost 600 in a range up to 850, folate was 12, not sure of range.

I was tested left and right for everything, had gastroscopy, ct scans, other tests for inflammation - super healthy otherwise..

greygoose
greygoose in reply to Hidden

Well, high cortisol could make it difficult to increase dose. Was it very high? What are you doing about the high cortisol?

Hidden
Hidden in reply to greygoose

I will need to check, but was quite high on saliva test, I remember 4 pm reading was double :( I was taking ashwagandha, did yoga , resistance training and to be honest it felt symptoms were better so never tested it again.

greygoose
greygoose in reply to Hidden

Ah, so perhaps you successfully brought it down.

So, are you supplementing with anything at the moment?

Hidden
Hidden in reply to greygoose

Nothing this moment apart from valerian tablets for sleep...today started magnesium chelate.

I have one more question...or two :) I used to split ndt when cortisol was high, but for the last few days I have been taking the whole lot in the morning, which resulted in more energy in the morning, then a crash around 12-2 pm then better again. Headaches in the evenings though...another: I was on 2.5 grains for couple of months beginning of the year, then went up to 2.75, that was hard, went back to 2.5 after 2 weeks and did hold for 6 weeks and somehow felt a bit better then endo decreased by quarter for now 10-12 weeks...should I be holding for at least 6 months to see the full effect?

greygoose
greygoose in reply to Hidden

6 weeks, not six months. You should retest six weeks after a dose change. That gives the T4 time to be fully synthesised by the body. Why did the endo decrease it if you were feeling better?

Hidden
Hidden in reply to greygoose

I meant 6 months if it feels okay, I know before it took me several months to feel the full effect with skin hair sleep etc. He wanted to help , he said if I have insomnia still and I'm tired I should decrease by 1/4 and see if it improves. It improved, after a few weeks I slept and became less spaced out and lile myself, but then down, gaining weight and achy etc

greygoose
greygoose in reply to Hidden

Well, of course, we're all different. And labs are only a guide, at best. It's how we feel that is the most important. :)

Hidden
Hidden in reply to greygoose

Oh grey will I ever get there...on one side I would love to stay on smaller dose because I sleep...sleep deprivation is the worst torture.

greygoose
greygoose in reply to Hidden

Well, try the T3 added to the 2.25 NDT. Or, you could try T3 only. Maybe you don't get on with T4 at the moment. These things happen. It's up to you to decide what you're prepared to go through to find the right dose of the right replacement. Last winter I decided to stop my T3 only, wait for a few weeks and start again. I wanted to make sure I was on the right dose. I'd increased rather too quickly the first time, I felt, and I wanted to do it more slowly. It wasn't fun, but it was bearable - and I have no thyroid. I waited until I felt really hypo and then started on 6.25 mcg T3, and increased by 6.25 mcg every two weeks. And, I came finally to the same dose I'd been on before - 75 mcg T3 only. Then, after a few weeks, I tried slightly reducing my T3 and adding in 25 mcg levo. Before, I hadn't been able to tolerate any amount of levo. Now, after years of T3 only, I'm find on it.

But, it was ok for me to do that, because I'm retired and live alone. No-one expects anything much of me. It didn't matter if I slept all day, or stayed up all night. I realise not everyone can do that. But, it does take a certain amount of experimenting for most people to get it right. There are so many possible variations. Doctors don't give us the freedom to find our own way, which is why I self-treat. It can be difficult. It has been for me. But, once I was sure in my own mind that I had got my hormone replacement to the best it was going to get, then I started experimenting with other things, like turmeric and CBD oil. It's all trial and error, I'm afraid. And, boy, have I made some spectacular errors! But, I'm still here, and still fighting. :)

Hidden
Hidden in reply to greygoose

Wow grey, that is some journey... I am on a notice period in my job, I have 6 weeks left there, but I can work from home and I possibly will go on sick benefit for a month or two to fix myself...so I will have the time, and space, my housemate and bf are very supportive. I just realised that I can't find the box of thybon :( I know a doctor who prescribes it, he wanted me on t3 only last year, but I was too scared.

Thank you grey x

greygoose
greygoose in reply to Hidden

Nothing to be scared of. We're always here if you have questions. :)

Hidden
Hidden in reply to greygoose

Thank you grey x had a tough night, few hours of interrupted sleep, around 4 am nauseous, dizzy, pulse between 50 and 60, thought I was going to pass out, felt hungry, now my stomach hurts like someone punched me in it. Started to split ndt dose, maybe my system is recalibrating...what a nightmare! Lso waking up at 3 am started to happen when I take ndt whole thing in the morning...

greygoose
greygoose in reply to Hidden

Well, that doesn't suit everyone. So, here's hoping that splitting your dose sorts out all your problems. :)

Hidden
Hidden in reply to greygoose

Thank you 😊 Right now I just want to go back to where I was 12 weeks ago, felt the best, even though sleeping was challenging. Then I will decide what's next. Staying at low range t3 is not making me feel well :(

greygoose
greygoose in reply to Hidden

No, it wouldn't. :(

If I were you I would have a thyroid genetic test, that would confirm whether or not you have a conversion problem. Understanding the problem makes it easier to find a solution....right now you appear to be blundering in the dark.

If you manage to have the test then report back here and somebody will advise on how to proceed. You say you have some T3, adding a little of that (a quarter tablet) to your 50mcg levo may be an option/starting point... once you know your conversion status. Just noticed greygoose has already given you good advice...listen to her!

Sadly there is no quick fix (as in paracetamol/headache) and any changes must be made very slowly - after 8 months tweaking first T4/T3 and then T3-only I am now slowly making progress thanks to the wonderful advice from people here.

I'm 73 and I was ill for decades ...so at 34 you can do this!

Hidden
Hidden in reply to DippyDame

Hi DippyDame, thank you for your words...so happy you are making progress! I have already been tweaking for a year :( but I am determined. I might try t3. I am also tempted to go to levo for 6 weeks and see how I'm doing. Right now I'm taking NT. But first is first...need to hold 2.5 grains for another 5 weeks, not rash decisions I guess.

DippyDame
DippyDame in reply to Hidden

"Super sad and losing hope"

It can be tough but hope the replies here help.

Good luck

Hidden
Hidden in reply to DippyDame

They do x thank you x

SlowDragon
SlowDragonAdministrator

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

Can you add your most recent vitamin results and ranges

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

Testing must be only after minimum of 6-8 weeks on constant dose

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If also on T3, or on NDT make sure to take last dose 12 hours prior to test.

If you have Hashimoto's are you on strictly gluten free diet

Hidden
Hidden in reply to SlowDragon

Hi SlowDragon, thanks, I have Hashimotos, results posted above, ATPO in thousands. I have it, my mam has it and half of the family, due to lugols iodine we were given back home during radioactivity from Chernobyl explosion in 80s. Been on gluten free, for several years, but no difference...as above, vitamins are mostly above mid-range, no issues there, worked on cortisol too. My suspicion was that I am a good converter therefore I don't do good on NDT as balance is never right of t4 and t3. The balance was always important for me to feel good.

Hiya, ritatita,

Your feelings of frustration are, not only understandable to me, but I sympathize fully.

In fact, your intuitive inclination to reduce your supplemental dose is one I wholeheartedly support. Some people insist that a suppressed TSH is not simply fine but even desireable. Based on my research and my personal experience, I do not agree, at all.

I was relieved to discover writings by Dr. Alan Christianson, who describes his vast experience treating Hashimoto's successfully and specific cases in which women have come to him, greatly overdosed, who he helped reduce their doses to achieve well-being. His is the only suggestion I have ever read about what he calls "dumping": a phenomenon in which the body, via kidneys and, I think, the liver, excrete excess hormone. The result is hypothyroid symptoms despite higher and higher doses. He even articulates the scenario, many on this site have cited, of experiencing improvement with a dose increase...for a few days, only to feel worse again. He also addresses the question of TSH and the importance of its role (something I've recently discovered in a medical journal article).

I am currently undergoing a major dose reduction and I have slept more soundly and felt more 'normal' than I have since my diagnosis, 1-1/2 years ago. I am very hopeful!

I encourage you to act according to these instincts to moderate your dose of these incredibly powerful hormones. Backing down is no easy process. I would advise a gradual reduction. Yet, it takes sticking through unpleasant symptoms for a few days at a time and fear and the sense that you might be making a mistake.

The thing is, I have never understood how we came to accept certain ideas about Hashimoto's and the treatment protocol for it. But that is a subject for another day...

Needless to say, my new mantra (changed from "How high can I get my dose?") is: How little thyroid hormone replacement does my body need to funtion optimally?

It might seem like a slight shift, but for me, it has been dramatic.

I wish you very well on your path!😊

Dr Alan Christianson was also recently talking about the success of a low iodine diet for Hashis.

Hidden
Hidden in reply to roxanaleah

Thank you roxanaleah x I sent you a PM, I was also reading about Dr Christianson

How's your progesterone? I had sleeplessness when progesterone was too low.

Hidden
Hidden in reply to Angel_of_the_North

my gyno ran tests recently on all and it was fine, my periods are regular also...only when I reduce my thyroid meds I can sleep, but it brings other symptoms

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