Should I take a higher dose of levothyroxine?

[TinaBW]

I was diagnosed with sub clinical hypothyroidism in September last year, from a routine blood test, doctor called and said she had sent over a prescription to the chemist but did not ask me if I had any symptoms at all. I took the tablets but they were then upped to 50mcg in the new year, both times I felt awful for the first couple of weeks and now she says I should take 75mcg as my levels are 6.06 mlU/L . I am conflicted, as some of the info I have researched says unless you are over 10 mlU/L it is not always necessary to treat with levothyroxine. I asked for a further blood test in 6 weeks so that I could decide whether to go on to the 75mcg or not. I now have the results which are slightly higher than last time, almost 7. I have been trying to do all of the things that are supposed to help my thyroid, this is consuming me daily. I am also seeing the Thyroid specialist in September . My doctor has written on my results that I declined to take the higher dose but that was 6 weeks ago to give me time to think. I explained this to her in my letter but she seems to imply that I have out rightly rejected the new dose. I do not want to fall out with my doctor. I am in the UK and I know the criteria it is diff dependent on where you are in the world. Any thoughts? Should I just take the new dosage or hold off until I see the specialist. I do not want to cause more damage to my body either way.

[helvella Administrator Thyroid UK]

TinaBW,

In my view, TSH alone (and that appears to be what you refer to) is not a good basis for diagnosis - nor for adjusting treatment.

However, put that to one side for a while.

Most people end up needing sufficient thyroid hormone for TSH to be very close to 1, or below.

Yours being around 6 or 7 almost certainly means you need a higher dose.

What have you been doing to help your thyroid? There is an awful lot of poor information available. (And, just to make it clear, you shouldn't believe anything I say without looking further and checking it out.)

The issue about TSH being 10 is a dreadful idea contained in NICE and some other guidelines. My TSH has never been anything like that high - but I definitely had numerous symptoms.

Has anything else been looked at? Like iron (e.g. ferritin) or vitamin B12?

Anyway, I'd be very surprised if you did not need a dose increase, and very likely beyond 75.

[TinaBW in reply to helvella]

Thank you for your reply. The doc has only done blood tests but has never seen me to discuss my treatment or how I am feeling physically. I will see if I can speak to my GP in the coming days.

[helvella Administrator Thyroid UK in reply to TinaBW]

Don't hesitate to post and ask questions.

You have been let down badly in terms of discussing the issues.

Many here would suggest that without doubt you should have several additional tests.

Free T4

Free T3 (ideally - many labs refuse even if doctors agree)

Vitamin B12

Ferritin (and, ideally, other iron-related tests)

Full blood count

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Whichever way you look at it if you are getting TSH results above range, especially when on treatment even then you need a higher dose.

What symptoms do you have?

Its true that one of the criteria for beginning treatment is a TSH over 10 but usually by that time most people are pretty sick and sometimes bedbound.

There is another criteria of having 2 TSH results above range, 3 months apart which should also trigger a diagnosis and treatment.

Levothyroxine is not harming you in any way. Its simply replacing what your own thyroid can no longer produce. If you stopped taking it tomorrow then your thyroid levels would simply drop back to where you started, no permanent effects.

Every cell in the body requires thyroid hormone. If you don't have enough of it then there will be many effects that get worse over time. Hypothyroid people get free prescriptions because its an essential hormone for life.

The aim of treatment is to normalise the TSH and bring it down to around 1 or just under and aleviate symptoms.

Its quite normal when beginning Levo or just after an increase in dose to feel worse. Its just the body adjusting to having more of what it needs and healing taking place.

I'd recommend you do some reading about hypothyroidism to understand it better. Also to accept the increase dose. This website is a good place to start to learn more: thyroidpharmacist.com/

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

[SlowDragon Administrator]

Even if we frequently start on only 50mcg, 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 (typically 1.6mcg levothyroxine per kilo of your weight per day)

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

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

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and if on inadequate dose levothyroxine - as you currently are

What vitamin supplements are you taking

Is your hypothyroidism autoimmune

[TinaBW in reply to SlowDragon]

Looking at my first blood test results back in September last year it looks like the GP tested for autoimmune and from my own research into the results. I presume I am not as we have not had a discussion about any of this. I am taking a thyroid complex that has multivitamins inc selenium and it does have 50% of my daily allowance of Iodine . I only take one capsule if I have not had too much other food with iodine in on that day. I am not sure if other people take iodine at all? I was told by another GP that it was not necessary but I calculate my daily intake of most vitamins and minerals to make sure I am not taking too much.

[SlowDragon Administrator in reply to TinaBW]

I am taking a thyroid complex that has multivitamins inc selenium and it does have 50% of my daily allowance of Iodine

You really do NOT ever want to take anything with iodine in when on replacement thyroid hormones

multivitamins generally never recommended

Test vitamin D, folate, ferritin and B12 and only supplement as necessary

Never take iron unless tested and in need.

Stop any supplements that contain biotin a week before all blood tests

[greygoose]

First of all, you are not doing any damage to your thyroid by taking levo. It is thyroid hormone, not a drug.

Secondly, forget everything you've ever read about TSH (which is not your thyroid, it's a pituitary hormone) having to be over 10. The reason for that codswallop is that the NHS wants to diagnose as few people as hypo as possible because they don't like treating it, and it costs them money. When you consider that the TSH of a person with no thyroid problems - euthyroid - is around 1, over 2 means your thyroid is struggling, and you're hypo when it reaches 3, having a TSH over 7 means you are very hypo. Especially if you're already on thyroid hormone replacement - levo - it almost amounts to negligence! And, by the time your TSH has reached that point it's far to late to try and do anything to help your thyroid - your thyroid has had it (think Monty Python parrot sketch substituting 'thyroid' for 'parrot'). (Sorry, I have a sick sense of humour )

And, at that point, it doesn't matter whether you think you have symptoms or not, harm is being done to your body by lack of thyroid hormone, which is needed by every single cell in your body to function correctly. So, yes, you should take the increase in dose now, and not wait.

Oh, and feeling bad after each increase is pretty common, and nothing to worry about.

[Brightness14 in reply to greygoose]

It just keeps getting better, great.

[TinaBW in reply to greygoose]

Thank you for your reply. I just had enough last night and emailed the doctor to say I would take the higher dose. I concede! I guess I need to accept that I have this condition rather than fighting it. I just did not like the way the doctor handed out pills but had no interest in how I may or may not be feeling prior to and at the time of diagnosis. All seemed to easy. but at the end of the day its my health that is important! Glad to know that it is normal to feel bad after an increase, this just leads me to question whether my body actually needs it, if that makes sense.

[greygoose in reply to TinaBW]

Well, I'm afraid that's just the way doctors are. They know nothing about thyroid so don't get into a discussion about it, and even if you told her your symptoms she wouldn't have a clue about how that related to thyroid. And, if you don't mind me saying so, you're lucky she just gave you an increase in dose without having to fight for it - most people would be happy about that. But, not going to get much sense out of any doctor about it. We've all learnt the hard way that you have to become the specialist in your own disease, because you won't find one in a doctor's surgery.

Yes, you do have to accept that you have the problem and learn to live with it. It's not going to go away. And yes, I do know what you mean by questioning if your body actually needs it, but it doesn't make any sense. That's just wishful thinking. You body does need it - it will die without it. You cannot live without thyroid hormones.

That said, levo might not be the right form for you, but you're not far enough into your treatment yet to come to any decisions like that. It's very hard for a lot of people in the beginning, but they settle into it. If, in a couple of years time, you decide that levo isn't right for you, then we can talk about alternative forms of thyroid hormone. But, levo is the logical first step because it's cheap and easy to use. You have to be patient, I'm afraid. Nothing happens rapidly in the hormone world.

[TinaBW in reply to greygoose]

Thank you.

[greygoose in reply to TinaBW]

you're welcome.

[FallingInReverse]

Hi Tina, just to add on to the above, although TSH is not the end all be all of thyroid management, there have been studies on the distribution of TSH in euthyroid populations (ie, those that do not have any identified thyroid issue that needs treatment).

You can see that by the time someone reaches 4 you’d have to be 1 in 100 to be euthyroid. Exceeding 5 or 6 - statistically - there is - zero chance that all is functioning well.

Now - the “why” and the “what to do about it” requires all the blood tests that others have recommended above. So I’ll defer to everything said above, and look forward to your future results/updates!

Tsh chart

[Wyaatch]

Only slightly more than your last thyroid test then? I would not rush that as you may have a better experience with the expert and you need to talk with a neutral person, who will not be offended by a pause or slight delay or a question. This especially would make sense to delay if you do not feel bad with a slight rise.Try to recheck the info about 10…that seems important as you may not need it at all. I think that what you may be going to ask the expert apart. ( by the way is it easy or hard to switch thyroid docs. Where you are…you might ask around and look for a more open doc.) I face this sometimes too…especially over their need to see me on more pills!