Levothyroxine not working for me

[Anailil10]

Hi All,

I have Hashimoto's . I have been on 100mcg Levothyroxine for about two years now. All this time my TSH levels were up and down. I am not gluten free but I eat healthy. About a month ago my Levo dose was incresed to 125mgc , three days a week. After the first dose I started feeling very unwell, fatigue, weakness, headaches, nausea, heart palpitation, getting overheated , feeling unsteady,anxious to the point were I could not function.

After two weeks I had blood tests done

25 July

TSH-3.66( 0.30-4.20)

FT4-24.4(12-22)

FT3 was not tested. I wad told to go back to 100mcg of Levo. Some of the symptoms are gone but I still feel fatigued , nausea, sore muscles, very weak.

The reason I had my dose incresed is because at the end of May my TSH was a little increased

25 May

TSH-6.43(0.30-4.20)

FT4-19.4(12-22)

FT3-4.8(3.1-6.8)

I am so sick and tired to not have enough energy to function properly.

Now I don't know what to do, I feel so hopeless

Ever since I started Levo I never felt well.

I wonder if it is worth taking it , if it does not help me

My GP does not care about how I feel, neither my endo ,so I am left to suffer

[silverfox7]

You may not be converting very well. Get your doctor to test Vit D, Folate, B12 and ferritin. These help your thyroid to function much better but results need to be optimal, not just in range so post results for further guidance. Most of us need to supplement so it's not unsual.

[Anailil10 in reply to silverfox7]

Thanks for the reply Silverfox7

My Vit D3 is 77nmol/l at the moment(I am taking 2000units/day with Magnesium)

Last year I had iron studies, B12 and folate done:

Iron-17.6 umol/l(11-36)

Ferritin-33ug/l -no range provided

TIBC- 63.0umol/l (53-85)

Transferrin saturation index-27.9%(20-40%)

Vit B12-367ng/l (160-925)

Folate-5.0 ug/l (2.9-50)

Would these be considered optimal?

Thank you

[Angel_of_the_North in reply to Anailil10]

No, not optimal:

Ferritin-33ug/l -no range provided

Needs to be at least 70

Vit B12-367ng/l (160-925)

Needs to be at lest 500, pref at top of range or over

Folate-5.0 ug/l (2.9-50)

Needs to be half way up range

[Anailil10 in reply to Angel_of_the_North]

Thank you for the reply Angel_of_the_north, I guess I will have to start supplementing on these nutrients

[silverfox7 in reply to Anailil10]

Lots of us supplement and usually if we need to supplement its for life but once optimal we may find a maintenance dose to keep it there. Sadly having a thyroid issue means we tend to lose vitamins and minerals more readily but getting and keeping things optimal makes a huge difference to our thyroid health.

[Anailil10 in reply to silverfox7]

Thanks for the advice silverfox7, it is not easy to get everything in line when you have thyroid issues but I guess it is worth fighting to get there , also it is important to have help and support, because sometimes we feel so alone in this battle, and most important never to give up on ourselves

[greygoose]

Your TSH is still 'a little increased'. At 3.66 you're still hypo. It should come down to 1 or under when taking levo.

You say that after the first dose of the increase, you felt unwell. But, that can have nothing to do with the increase because that takes six weeks to have full effect. Did your increase in dose mean you changed brands? Or had two different brands to make up the number? It could be the fillers in the tablets that affected you like that.

You really do need an increase in dose if you're ever going to feel well. It could be that you aren't converting very well, and that's why both your TSH and FT4 are raised. But, whilst the TSH is that high, it's not possible to tell. When the TSH comes down to one, you need your FT3 tested to see how well you convert. Till then, you need the increase in dose. But, do get your nutrients tested because they could be low, and they need to be optimal for your body to use thyroid hormone correctly. And it's not about how healthy you eat, it's about how much you can absorb. Hypos often absorb very little.

[Anailil10 in reply to greygoose]

Thanks for the advise greygoose

I had two different brands to make up the numbers. But everytime I try to increase the dose, same thing happens.

It is like my body cannot tolerate more Levo. It is so frustrating

[greygoose in reply to Anailil10]

OK, so one of the brands is not agreeing with you. Can you try increasing the brand that does agree with you, the one you normally take? Even if you have to cut the pills or alternate the doses or something. Mixing brands is often a bad idea.

Or, could you get your FT4 and FT3 tested privately, to see if conversion is a problem? You might be better off staying on the lower dose of levo and adding in some T3.

[Anailil10 in reply to greygoose]

Thanks again for the advise greygoose

[greygoose in reply to Anailil10]

You're welcome.