185mcg Levothyroxine did nothing. I take 125mcg levo now and 75mcg liothyronine.

[eleos]

I had extreme fatigue. I was so ill that my gut stopped working and could not digest anything. But my blood tests were fine(only b12 and iron were low but not below the range). Finally i did some thyroid tests and my tsh was 4.7 and T3 and T4 both extremely low.

Started at 65mcg and then at 185mcg for 1.5 months and nothing. No increase in energy, no better digestion ,nothing. Finally i tried 25mcg liothyronine and for the first time after many years i felt alive. Not great, but alive. I lowered the dose to 125mcg levothyroxine and i take now 75mcg liothyronine.

According to most people that's a lot. That's 350mcg. But still i don't have increased heart rate, or hyper symptoms. Just increased energy , better digestion and libido. Still i am not cured because i can't work out. I will say that i am cured if i work out 2 times per day and still have energy.

[eleos]

Unfortunately in my country we don't have NDT. I have two relatives with hashimoto and after many years they still feel terrible because they take Levothyroxine only. Although there are many diseases worse than ours(cancer etc) still this is a terrible disease. Could not even get out of bed and i am 32 years old.

[silverfox7]

Have you tried to get your B12 and iron higher? The four things that help our thyroid work better are Vit D, B12, folate and ferritin to be optimal. SeasideSusie has the optimum levels for those and suggestions how to achieve them so search for her posts. It may make a difference to your energy levels but also be aware it could alter your bloods as well so keep an eye out for that.

[trelemorele]

I wouldn't worry about that, you're not the only one. That scare tactic with regards to "high" as in MCGs came from doctors and some adopted and repeat it.

Don't worry about that.

[JanD236]

Vitamin B12 deficiency is very likely to be causing your symptoms and needs to be urgently addressed.

Please see the Pernicious Anaemia/B12 deficiency forum for help and advice.

If you have your B12 and iron blood test results that would be useful. Also folate if taken.

[Howard39]

Hi

Glad you are feeling better.

You mentioned that you had stomach- absorbtion issues. If it was me I’d double check by having a stool analysis say thro Genova and make absolutely sure you don’t have low probiotics low stomach acid Candida or other bacteria. You can take all the meds/ vitamins you want but if there are any issues it will save you money and make your feel tons better.

Then I’d address the vitamins.

Have your adrenals ever been checked?

Best wishes

[SilverAvocado]

I also take a very high dose, and was initially in bed the whole time.

On my current dose - 7 grains of NDT - I'm able to wash and dress myself, make simple meals, move around the house, watch most things on TV and read a little. I'm starting to go out for short walks and increase my number of steps per day. I can do several activities in a week (like going to optician today) without several days of rest in between. But I am continuing to increase my dose hoping for more improvement.

My pulse, blood pressure, temp, etc. Are also not high. In fact my pulse is reducing all the time. It only went down to 60-70 when I was on no hormone at all (I have no thyroid), then went up into the 90s, and is now down to the low 80s and sometimes 70s. Although at the moment I'm having the issue that if I stay up late one time it takes a week or more for my pulse to drop again.

Working out twice a day is an awfully big goal! Most well people wouldn't do that. Maybe once or twice a week doing something more gentle than you did before. It's hard to know how many people recover to that 100% point. I think most people get to more like 70-80%, this is able to most things they used to be able to do, but not the absolute most energetic things. And having the odd nap or early night they didn't need before. I may be wrong, though. It's hard to find people talking about these specifics.

[SilverAvocado in reply to SilverAvocado]

If your vitamins are still low, I agree with others. Treat those. The bottom of the ranges are ridiculously low and you'd be half dead on those. Low in the range is bad, as most need to be at least halfway, and some need to be at the top.

[Hidden in reply to SilverAvocado]

When I was on 3 grains of NDT my FT3 was 8.2 that is over the range. With no thyroid either. Perhaps I should have increased to 7 grains per day to feel better.

[SilverAvocado in reply to Hidden]

I increased very slowly, with blood tests, pulse, temp, symptoms diaries, etc. So I'm sure I'm better on this does than any previous one.

Some kind of thyroid hormone resistance/insensitivity. This can be genetic, but I've just found it can be caused by other things to do with sugar metabolism, sex hormones, etc. So I will start investigating those, soon.

I might not have had the courage to take my freeT3 over range of I wasn't very impaired on an in-range dose. Although my freeT3 raises very slowly. It's 9.8 at the moment. It did jump up to 11 at one point and I was more scared to raise at that point.

[eleos]

Thanks all for the replies. My b12 was 231pg/ml and the normal ranges are 191-663. My ferritin was 114.0 mcg/L and the normal ranges are 30-400. My iron(fe) was 84mcg/DL and the normal ranges are 59-158.

I think that all these low levels are caused by my gut not working properly and not absorving foods. Now that i have better digestion with the thyroid medication i believe that i will have better results. Next week i will do again blood tests .

[SilverAvocado in reply to eleos]

That B12 is very low. I don't know enough to comment on the others. The rule of thumb is halfway through the range, but it can be more complicated than that. Ferritin look low.

For B12 the better tablets are sublingual - dissolved under the tongue and it goes straight into the blood supply.

[Chancery in reply to eleos]

Your B12 is too low and the symptoms you describe could equally well be laid at B12's door as your thyroid. The base line figures they use are very old and very inaccurate so although your blood test results put you in the ok zone (just!) the chances are they are not okay for you. You're not a vegan/vegetarian or regular dieter are you? If so, your B12 problem will almost certainly be coming from there, or you may have undiagnosed pernicious anaemia. Haematologists know the B12 figures are inaccurate and many people have problems at the lower end of the scale, but none of them do anything about it. If you haven't read "Could it Be B12?" by Sally Pacholok I recommend you borrow/buy it. You could easily argue for a course in B12 injections from your doctor. They are cheap and safe and might make all the difference. Fortunately if it is a B12 problem you will get good results quickly, providing you have the correct regimen. Best of luck!

[Chancery in reply to eleos]

Sorry, me again, forgot to say, you may also have undiagnosed coeliac disease if you are having stomach problems. That would cause all the symptoms you describe plus it will also cause low B12 and nutritional problems. If you haven't been tested for that you need to ask to have it done post haste. Good luck.

[charliecooper]

Your story is similar to mine - I was taking T4 for yrs but made zero difference to my life. Increased it and it just made me even more tired. Been on T3 for a while now, so much better! The day after I first took it, wow! I hadn't felt that good for a long time so i know this med is the one for me. That feeling has slowly dwindled though.

[ZoBo in reply to charliecooper]

Glad the T3 is working it makes me feel hopeful. I'm about to start taking it. I'm just hoping it agrees with me. I put a post on here to ask people how they felt on it. For some reason admin rejected it. So I doubt I'll put another post on.

[helvella Administrator in reply to ZoBo]

Your post is still there:

healthunlocked.com/thyroidu...

The ONLY issue was your follow up to that post. Because it was posted as a completely new, separate post (ratheer than as a reply on the thread you'd started) it wasn't easy for anyone to understand it.

SeasideSusie did explain in her reply to you and added a link to your original post.