New results do not agree with how I am feeling

[maplewood]

Recent bloods TSH 3.9 ref range( 0.35 to 4.7) and T4 9.0 ref range (7.8 to 21.0) so why do I feel like I have one foot in the grave. I have been suffering with head/neck pressure, feeling faint. Tinnitus, pain in neck behind ear. Painful cramps so much so I was limping and generally feeling like I was dying (no joke). So a couple of nights I did not take my medication and started to feel better. So I have been taking meds on alternate nights to give myself chance to think what I need to do. I know you probably wont agree with me but there has to be a link to the medication itself?? I am not sure if my T4 is where it should be? I know it is in range but if the range goes up to 21 should it be higher? I question the medication and my ability to deal with it as when I started on it 2013 I was told i was developing Lupus and then it settled and they now say i do not have it. I have heard of Lupus induced by drugs. Any advice much appreciated on this lovely long weekend. Thanks everyone x

[SlowDragon Administrator]

On levothyroxine TSH should ALWAYS be under 2

You’re under medicated and need dose increase

Obviously essential to be taking levothyroxine everyday

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Presumably you have Hashimoto’s, also called autoimmune thyroid disease

Essential to test vitamin D, folate, ferritin and B12

[maplewood in reply to SlowDragon]

Hiya I do not believe I have hashimoto as I have never had any antibodies.

[SlowDragon Administrator in reply to maplewood]

Have you had BOTH TPO and TG antibodies tested

Lupus and autoimmune thyroid disease (hashimoto’s) often have very similar symptoms...especially rash on face

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[greygoose]

You are still hypo, that's why you feel so bad. A euthyroid TSH is around 1, never more than 2. At 3 you are hypo. And a hypo needs a TSH of 1 or under - usually under.

Your FT4 is much too low, even though it is in range. As you say, the range is very wide, and you cannot possibly feel the same at the bottom of the range as you would at the top. Most hypos need their FT4 somewhere up in the top third of the range. Yours is only 9.09% through the range, so you are extremely under-medicated. How much levo are you taking.

So a couple of nights I did not take my medication and started to feel better.

Now, this is a well-known phenomena, and happens to most people. No-one knows why. But, we do know that it does not indicate that the levo doesn't suit you, nor does it indicate that the levo is causing your symptoms. Your symptoms are caused by under-medication - which, funnily enough, can be worse that not being medicated at all. So, although you may feel better when stopping the levo, that feeling will not last. Sooner or later, the hypo symptoms will come creeping back in again.

I have heard of Lupus induced by drugs.

Levo is not a drug. It is a hormone. I have never heard of a hormone inducing Lupus.

I really think that what you need is an increase in dose. How long have you been on your present dose? Quite frankly, your new results agree exactly with the way you feel.

[maplewood in reply to greygoose]

I had been taking 100mg of liquid for a week. Prior to that i was on 85 as i was trying to increase my dose slowly. I am trying to keep up the supplements of vit d etc too.

[greygoose in reply to maplewood]

OK, so the dose is obviously too low for you. You need an increase.

[maplewood in reply to greygoose]

Gosh I will increase tonight and you are right. I actually feel worse now than I did at the beginning of my journey. It really can be very scary I thought I was leaving planet earth that's for sure. Thank you

[greygoose in reply to maplewood]

You're welcome. Let us know how you get on.

[maplewood in reply to greygoose]

Will do, thank you

[greygoose in reply to maplewood]

You're welcome.

[SlowDragon Administrator in reply to maplewood]

If these recent results are from not taking levothyroxine everyday it’s not a true result

How much do you weigh in kilo approx

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Recommend you take 100mcg everyday without fail and retest after 6-8 weeks

Do you normally take levothyroxine waking or at bedtime?

You can split the dose, if it helps. 50mcg waking and 50mcg at bedtime

Retest thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

[maplewood in reply to SlowDragon]

Thank you. Yes I am taking 100mg every night now at bedtime. I had been taking levo every day I was working up from 75 to 100. I had only been taking the 100 a few days as I thought the cramps maybe indicated I was under medicated when i started feeling faint.

[SlowDragon Administrator in reply to maplewood]

Recommend getting full thyroid and vitamins tested minimum of 6-8 weeks after being on 100mcg levothyroxine everyday

[maplewood in reply to SlowDragon]

Hi I am sorry to keep moaning but on the back of our discussion just wondered what your thought were on the following. Over this last week I have had new symptoms head/neck pressure, balance issues, feeling faint, strange tingling on face, nausea, ears feel full. Is this a common problem when under medicated do you know. It has been very difficult to cope with and i am wondering if it is thyroid related. I am desperate for improvement so hanging on with 100mg but part of me is still worried it is the actual medication causing it. Thanks x

[SlowDragon Administrator in reply to maplewood]

You need to wait minimum 6-8 weeks before retesting

Common to feel worse before you start to feel better

Do you always get same brand of levothyroxine

Which brand

[maplewood in reply to SlowDragon]

Had an argument with the pharmacy on my last delivery I said I only wanted teva liquid as that is what I have been given previously and said I did not want to mix it up. They said it should not make any difference which one you take of course I said I beg to differ.

[SlowDragon Administrator in reply to maplewood]

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently

Have you had coeliac blood test done

Are you on absolutely strictly gluten free diet?

[maplewood in reply to SlowDragon]

Not had vits checked for a while but going to ask GP next Tuesday when she rings. My test for Celiac was negative but I am mostly Gluten free anyway as I also discovered I have a wheat allergy and 100 per cent felt better with gut issues after I removed it. If I ingest gluten it will be because I have removed bread biscuits etc but it may be in something I have missed when not reading labels etc.

[SlowDragon Administrator in reply to maplewood]

So as you have Hashimoto’s and gluten intolerance you are likely to need addition of small doses of T3 prescribed alongside levothyroxine

Obviously first step is to get settled on 100mcg levothyroxine

Always same brand at each prescription

Plus extremely important to maintain optimal vitamin levels

Then get full thyroid testing....likely to show low Ft3

Email for list of recommended thyroid specialist endocrinologist who will prescribe T3

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works