Does the tiredness ever go away?

[kittenmittens]

Hello lovely people,

My question is, do others, who feel that they are correctly replaced, still feel a greater level of exhaustion than those without hypothyroidsim?

Do things tire you out more than they would someone who doesn't have hypothyroidism?

Does anyone feel 'normal', as if they don't have hypothyroidsm?

Am I being unrealistic to expect to feel like someone who doesn't have hypothyroidism (or close to it)?

Below is some more information for those who would like it:

I have Hashimoto's Hypothyroidism and I'm being treated with T4 and T3:

Here's the numbers:

TSH: 0.01 (Range 0.3 - 5)

FT4: 9.2 (Range 9 -21)

TT3: 2.3 (Range 0.9 - 2.5)

When I got these results I was taking 75mcg of T4 and 35mcg of T3.

I am now taking 50mcg T4 and 40mcg T3 but don't have the results for this yet.

(All my vitamin levels are fine and I take extra vitamins and have looked into this and have concluded that this is not the problem)

I began taking just Levothyroxine but after doing no better on it for a year I asked for T3 to be added with a view to eventually taking T3 only. However I am very much getting to the point where I'll probably only be able to raise my T3 and drop my T4 once more (if at all) before my T3 goes above range.

The T3 made a huge difference to me, and I stopped being depressed and was less tired. However, I had hoped that once I was on T3 only (which I pretty much am) to be restored to 'normal' and feel more like a person who does not have hypothyroidism. One endo said to me I would probably always feel a little more tired than other people and I thought that would be okay, I could live with that.

However, now, with my blood results in the right places, and taking the maximum amount of T3, I still feel no where near 'normal' in terms of tiredness.

(I have been through the stages also where the T4 was higher and the T3 lower when I was taking more T4 and less T3, so I have tried all the combinations of T3 and T4).

I work 2 days a week and recently the hours I do in a day have become longer and I have more to do in a day, and I'm going to have to leave my job as it utterly exhausts me, everything exhausts me. I feel that the job is something that someone without Hypothyroidism could do, and I see my friends and family able to do much more than me without becoming exhausted.

I'm not really looking for reasons for why I feel so tired, or advice on how to feel less tired as such. I'm more interested in hearing if anyone feels 'normal', as if they don't have hypothyroidism?

Because that is the Drs stance, the general wisdom - if you replace the hormone you will feel normal again as there will be nothing wrong with you as the hormone has been replaced.

But I have a feeling this isn't true, but I'm not sure of the extent of how much it isn't true. I'm wondering if I'm being unrealistic to expect to feel like someone who doesn't have hypothyroidism (or close to it).

Thanks for reading xx

[SeasideSusie Remembering]

kittenmittens I take a Levo and T3 combination and I found that when I lowered my Levo to an amount which made my FT4 very low in range, it also lowered my FT3 (so I do convert some myself) and that made me extremely tired. I reduced Levo only by 25mcg and my FT4 plummeted from 75% through range to 8%, and my FT3 from 94% to 40%. Even though I added the 25mcg Levo back in, 4 months later I'm still not back to where I was.

With the results you've posted, I certainly wouldn't have reduced the Levo as your FT4 was at the very bottom of the range. And why Total T3 and not FT3, the TT3 result really isn't much use, it's FT3 you need.

[kittenmittens in reply to SeasideSusie]

Thanks for the reply SeasideSusie

With me, dropping the Levo has not dropped my T3. And I dropped it so I could add in more Lio because I wanted to try T3 only to see if that was any better or worse.

And I feel no worse now than when my FT4 was at 14.3 (TT3 2). There have been improvements in my energy along the way, but now, when I have tried all the combinations and am at the end of the road with how much T3 or T4 I can take, with my levels as they are , or as they have been on other combinations, I just don't think I'll ever get close to feeling 'normal' exhaustion wise and wondered if this was common.

The labs just do not test for FT3, I have requested it many times and they just don't do it, this is through my GP and my Endo. I simply can't get it done, and private blood tests are beyond my financial reach, having been working only 2 days and soon to be not working at all. I do not know why, perhaps it is different because I'm in Scotland, perhaps the recommendations here are to test for TT3 rather that FT3. And TT3 is what the GPs and Endos go on, it is normal to them, they don't seem to understand why I have requested FT3 previously, but have asked for it to be tested, but it just comes back from the labs with TT3 results.

[SeasideSusie Remembering in reply to kittenmittens]

Medichecks to Thyroid Monitoring (I think that's what it's called) which tests TSH, FT4 and FT3. I think it's normally £39, sometimes it's on offer on Thyroid Thursday at £29. Personally, I don't think you can tweak meds without knowing FT3. Total T3 tells you nothing really, it's the Free T3 you need to know.

As you're Hashi's, are you gluten free? Taking selenium? Some Hashi's patients find they need to be dairy free, also some give up sugar. (I'm so glad I'm not Hashi's )

Any gut issues, low stomach acid scdlifestyle.com/2012/03/3-... , absorption issues, all common with Hashi's.

Vitamins and minerals all at recommended levels?

Vit D - 100-150nmol/L

B12 - very top of range

Folate - at least half way through range

Ferritin - half way through range

I'm trying to think of everything I can.

[kittenmittens in reply to SeasideSusie]

Thanks SeasideSusie,

To be honest I'm not hugely relying on the test results anymore but going by how I feel. I keep a symptoms diary where I note each day how I feel, energy levels, etc, and that allows me to note any changes.

But the Dr's go on the bloods and will only allow me to tweak medication using their preferred results which is TT3 ( I don't know why this is, as I said perhaps it's something to do with being in Scotland).

Vitamin levels are all good and I take extra ones anyway just to be on the safe side. I don't think I have absorption problems as the levels are all good.

Gluten free, dairy free, etc is not really an option for me as I have food issues.

I really appreciate you taking the time to try and find solutions, but what I really would like to know is just if this is common. Do those who feel they are adequately replaced still feel more tired than the average person? Is it just one of those illnesses that does that? Are the Drs wrong when they say replacing thyroxine will allow you to feel 'normal'?

[startagaingirl]

Hi - yes it is certainly possible to feel good despite hypo. I am hashis, gluten and dairy free with reactions confirming intolerance. I am also on t4+t3, thyroid results optimal. Still a bit to go with ferritin and vit d. My energy levels are very good and I am learning how to tweak t3 intake up and down slightly based on activity levels. I do this as I find that any significant extra energy expenditure leaves me feeling very tired and hypo with recovery taking a couple of days.

So it could be that maybe something in your nutrients is not quite as good as you think, you do have food intolerance and may have to find a way to remove these from your diet or it may simply take a while for your body to recover from your thyroid deficient state and accept that it now has enough hormone.

I would suggest that you maybe stop chopping and changing meds for a while and give your body a chance to settle properly.

I hope you find a way to feel better soon.

Btw: it took 7 months of regularly increasing treatment and gluten/dairy free for me to feel a major improvement. It is only now, over a year later, that I really feel on top of it and in control. Though I admit I haven't been good with supplements recently due to travelling and holidays and I am starting to feel the difference - back on the wagon for me!

Gilian

[kittenmittens in reply to startagaingirl]

Thanks for the reply startagaingirl,

I'm glad to hear you're feeling good, and it's interesting to hear that extra energy expenditure can leave you tired and hypo, that's the sort of thing I want to find out - do people with hypothyroidism ever get back to the stage of being exactly like a person who doesn't have a thyroid issue, or will we always struggle, and if so, to what degree?

Now that feel on top of your hypothyroidism do you feel like you have the energy of someone without hypothyroidism, or do you feel you'll always be more tired?

I haven't been chopping and changing my meds as such, I began on 175mcg of Levo and have been slowly reducing that and adding in Lio over the course of a year (a small change every 2 months), under the supervision of an endocrinologist. So for each change I've had a chance to see how I feel. But my aim was to try T3 only as I felt worse on T4 than without it. Which is why I've been changing regularly. But once I'm on T3 only I will leave things as they are for a while (possibly for good if I feel well).

I know what is making me tired, it's the increase in my working hours and what I have to do in a day, I felt much better when I was off for a while. However, I feel someone without hypothyroidism would not feel the same level of tiredness, and am wondering if that's what others experience too.

Thanks for the advice though, I appreciate you taking the time to give me some suggestions on how I might feel less tired x

[startagaingirl in reply to kittenmittens]

Hi again, I have stacks of energy for a normal level of activity, but because of the hypo I just don't have the reserves of energy to cover extra activity without a bit of extra t3 to compensate. I no longer have the dragging, totally physically drained feeling that I had before diagnosis and treatment, in fact I now bounce around the place. To give you an example (I am on 100 t4+25 t3), I recently went on a city break to a very hot, humid place. The first day we walked for about 10 miles and I felt wiped out that night and next day till I figured what was going on. So that night & next I took an extra 6.25 t3 and was a bit better but the next night I took an extra 12.5 and was back to normal. Having learned from that, when I subsequently went on a scuba diving holiday, I took an extra 12.5 t3 each night and was absolutely fine with no energy problems at all. At the end I simply dropped back to 25 t3 per day.

So no, I don't think I am exactly like a person without hypothyroid, but I really don't struggle at all with tiredness or lack of energy. What I do is manage my condition to compensate and enable me to live a very full, active life but to do so needs a bit of experimentation and listening to your body.

It will get better, hang on in there and keep learning.

Gillian

[kittenmittens in reply to startagaingirl]

Thanks Gillian,

That's exactly the sort of information I'm looking for, how it is you feel, and what is different compared to the average, non hypo person.

I'm going to keep your strategy in mind, I don't feel I can do it now when I'm still changing from T4 to T3 and getting blood tests and such, but maybe in future this could help me x

[SilverAvocado]

If you have those results but still feel quite bad, you could consider NDT. I got to the point of having perfect looking blood results, but I didn't feel much better. When switching to NDT it immediately felt a great improvement. Of course not everyone feels the same, but something worth trialing if you get to the end of the path with T4+T3.

[kittenmittens in reply to SilverAvocado]

Thanks for the reply SilverAvocado,

It is something that I will definitely consider, but I just don't know if I'm being unrealistic to expect to feel like someone who doesn't have hypothyroidism (or close to it).

Now that you're on NDT do you feel like someone who doesn't have hypothyroidism? Or do you still struggle with energy levels more than the average person do you think?

[SilverAvocado in reply to kittenmittens]

Yes, I was very interested in your question, too. I know there are people on their forum who've had a lot of improvement, but I wish people were more precise about exactly how well they are.

I am still veryunwell. I've gone from being mostly bedbound to mostly housebound. Which is a huge difference, but nowhere near 100%. I'm chasing more like 10%

[kittenmittens in reply to SilverAvocado]

Yeah, I would just like to know what I can realistically expect, from those who have been dealing with this longer than I have and who have gotten their meds sorted and who feel stable.

I'm sorry to hear you are still so unwell, but I'm glad to hear you've seen a difference which has really helped. Things can only get better from here x

[SlowDragon Administrator]

Personally I don't think Hashimoto's improves until antibodies fall, which for many/most usually means going strictly gluten free.

Have you had your antibodies checked recently?

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

[kittenmittens in reply to SlowDragon]

Thanks for the reply SlowDragon,

I haven't had my antibodies tested in 2 years at at time when I was much more unwell, then the results were:

R Thyroid Perox ABs Value: 724.0 Units U/ml Range (<<6.0 U)

I don't really know what this means, can you shed any light?

The Dr's aren't keen to test antibodies, I had to fight for that test. What would be my reasoning to the GP to convince them to test me again and what would the results tell me? (Private tests are beyond my means as I only work 2 days and am soon to be not working at all).

I had a look at the links you gave me, and it's compelling, but right now I can't even contemplate the huge changes I'd have to make to go gluten free, but perhaps at some point down the line.

Is it Hashimoto's you have yourself (if you don't mind me asking)?

Do you feel as if you have the energy levels of a person without hypothyroidism or do you think they are lower, and if so, to what extent?

Sorry for all the questions.

[SlowDragon Administrator in reply to kittenmittens]

If you read my profile, you will see gluten has been an enormous underlying issue. I had no idea or any gut symptoms.

Basically Hashimoto's affects our guts, or there is even increasing argument that Hashimoto's starts in the gut.

Leading research of all autoimmune diseases is looking increasingly at the gut as the start of the problem.

Your antibodies are very high.

I was absolutely against idea that gluten could be an issue and really couldn't imagine "giving up" so many foods. But it has been such an amazing change I would never consider eating anything with gluten in again.

My antibodies have fallen by 2/3rds in just over 18months.

[kittenmittens in reply to SlowDragon]

I am on board with the idea that gluten could really affect the thyroid, and the articles you linked to make a lot of sense. I'd love to be able to go gluten free just like that, but it's a massive change and, and I just don't have the energy to do it right now (which I know is a bit of a paradox as doing it would help to restore my energy). But I totally take on board what you're saying and at some point I'll hopefully be able to make those changes.

[SlowDragon Administrator in reply to kittenmittens]

I was just the same. It seemed an enormous change. But I spent 2 weeks before switching checking everything I ate and considered other options.

It does have to 100% to be effective, so absolutely no point denying yourself something one day and eating gluten the next. It's all or nothing.

Breakfast can be hardest. I make museli with certified gluten free oats (very cheap) and gluten free bread (M&S) - very good but not cheap. Gluten free cornflakes are pretty good

[DinaV]

I am on 125mg of euthyrox and I feel tired everyday. There are some exceptions when my mind is occupied and I know that I need to do something then I don't know where do I get the strength to do what I need to do, othervice my afternoon position is horizontal reading or watching TV. My e do told me that I will feel better after she increased the dose of euthyroxs, BUT I don't. I even think I feel worse....🙄

[kittenmittens in reply to DinaV]

Thanks for the reply DinaV,

It could be that you need to try something other than Levothyroxine, perhaps Liothyronine instead, you could post your latest blood test results and see what people think. I was really bad on Levothyroxine and it turned out I needed Liothyronine. But tiredness could also be a vitamin thing. You could ask the GP to test your vitamin levels and post them here and see what people think.

I'm just wondering if, when people feel they are in the right place with the thyroid replacement, do they have the same energy levels as those without hypothyroidism.

I think when you're still not sure if the replacements at the right level, or the right type, they will be exhausted.