Help! In range but feel terrible : I was really... - Thyroid UK

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Help! In range but feel terrible

Flowerpot108 profile image

I was really expecting TSH to be more elevated because I've been having to nap all the time, terrible muscle aches and joint pain, brain fog - for around 10 weeks before that test was done. USually they would up my meds so if I'm honest i staryed taking 25mcg extra (was on 125 upped to 150) and now I'm starting to feel normal. I know I shouldn't have done it but now what do I do? If I go back down a dose my life will be debilitiative. If they don't prescribe more I will won't be able to keep taking extra on the sly. I'm so sad right now, I thought it would be the ususal. Normally at 2 TSH I wouldn't feel that bad. CLoser to 0.5 is better but how do I get there?

11 Replies

I'm 28 by the way and I'm already not eating gluten or drinking too much alcohol and so on. I just want to be able to go on a bloody run again. Its crazy.

Do you think I should tell GP. Look I was naughty and I went up to 150 before talking to you and now I can live my life and my strength is building back up again. Can't I stay on this and we do another test in 6 weeks time and see how my symptoms go? If I have any weight loss or fast hearteate or anxiety or something I'll let you know. But can'tb we treat the symptoms not the test? And if not, and I have to go back to 125mcg what else are you going to do to help me not feel the way I do? Look at giving me T3?

I had a second opinion by a private doctor and he said if TSH balanced out and I still felt rough to look at giving me T3. Well my last 2 TSH results were around 2 and in range so maybe we need to look at that.

SlowDragon profile image
SlowDragonAdministrator

Results show you are still under medicated

Come clean to GP and say you have increased dose to 150mcg

Once you're on levo you really need TSH to be regularly less than 2 and usually less than 1. Yours is too high at 2.6, so that would suggest you are under-medicated. SeasideSusie or SlowDragon may have the "official" guidance to back this up so am tagging them.

So I think you need to come clean and say that you are taking 150 mcg and can't cope with a decrease, based on previous experience - oh and will they test free T4 and free T3 [which I can't see has been tested] so you can (both) see what your actual thyroid hormones are doing too?

Remember you are ONLY over-medicated if free T3 goes over-range - and if yours isn't even tested no-one will ever know.

Equally you don't know really if you will benefit from T3 meds unless you can see your free T3 and free T4 results - and these show you are a "poor converter"

Good luck x

SlowDragon profile image
SlowDragonAdministrator

How long since you started taking 150mcg

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

Recommend you get full thyroid testing done via Monitor My Health

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

Essential to test vitamin D too

Ferritin is far too low at 44

Are you vegetarian or vegan

No separate B12 result?

SeasideSusie profile image
SeasideSusieAdministrator

Flowerpot108

Here is some information that you can discuss with your GP about where TSH should be:

From GP Notebook

gpnotebook.com/simplepage.c...

Target level for TSH during thyroxine therapy

Fine tuning of the dose could be necessary in some patients

* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary

From GP online

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

The above show that your TSH should be below 2.5 or even 2. Below shows that TSH can be below range or suppressed for you to feel well as long as FT3 is within range

From the British Thyroid Foundation:

btf-thyroid.org/thyroid-fun...

How can blood tests be used to manage thyroid disorders?

.....

Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.

There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.

.....

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

You can obtain a copy of this article from Dionne at ThyroidUK:

tukadmin@thyroiduk.org

print it and highlight Question 6 to show your GP.

Your ferritin is too low at 44 (10-300), we tend to say it should be half way through range although some experts say that the optimal ferritin level for thyroid function is between 90-110 ng/ml. Your FBC doesn't suggest anaemia so it's a case of improving your ferritin level. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

bda.uk.com/resource/iron-ri...

You have a folate result but I can't see one for B12 or Vit D, both of these should also be tested.

This is AMAZING thank you. I will go through all this with them.

Your MCV - Mean Cell Volume - is 28.5% of the way through the range. It would be better if it was closer to mid-range.

MCV is a measure of the size of your red blood cells and yours are a bit on the small side, and this suggests you have rather a low iron level.

Please note that high in range or over range MCV indicates a problem with low vitamin B12 and/or low folate. If people are low in those AND low in iron then MCV might be unremarkable. So an MCV which is roughly mid-range could disguise several deficiencies.

Your haemoglobin 138 (115 - 165) is well in range, so you aren't actually anaemic, which is good news. People can be iron deficient without being anaemic - it isn't that unusual.

onlinelibrary.wiley.com/doi...

cmaj.ca/content/cmaj/184/11...

Your ferritin (iron stores) is only about 8% of the way through the range, and many of us feel best with it being mid-range or a bit over, so about 155 - 230(ish).

It is not a good idea to supplement iron just on the basis of a ferritin result. Some people find that supplementing iron just raises their serum iron quite dramatically and not their ferritin level. It is best if someone has an iron panel done first. You might find this thread of interest on the subject :

healthunlocked.com/thyroidu...

Your first step should be to try and increase your intake of iron from your diet.

This website has some helpful advice : dailyiron.net/ but I would aslso suggest doing some web searches for lists of iron rich foods.

It is possible to get an iron panel done privately with a finger-prick sample :

medichecks.com/iron-tests/i...

For discounts, see this link :

thyroiduk.org/help-and-supp...

Note that Medichecks has one test every Thursday which has a higher discount, and very occasionally they discount the iron deficiency test.

Many of the private blood testing companies in the UK will send you details of their sales and discounts if you register with them. Personally I've registered with Blue Horizon and Medichecks and I do find their money off info useful.

Thank you!

My private only Endocrinologist explained to me that any TSH above 2.5 is hypothyroidism and needs to be around 1.00. Sounds like you are experiencing hypo symptoms and need an increase in T4 or T3 medications. You need to aim to be around 1.00 for your TSH to feel okMostly a healthy persons TSH is around 1.00. The NHS ranges are set too wide. If you lived in Germany they treat you when a TSH gets to 3.00. Here in the U.K. with our poorly funded NHS they make you wait until it gets to 10.00 by which time you are really suffering. I wasn’t treated back in 2008 until my TSH was 36! I was in an awful state trying to keep my full time job.

Flowerpot108 profile image
Flowerpot108 in reply to McPammy

Oh my GOSH knowing TSH at 13 and how bad that was I can't imagine 36. That must have been horrid you poor thing!

Thank you for all your help! They approved the inrease to 150mcg. You guys are my heroes ❤️

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