Struggling with the right levothyroxine dose

Hi there, I still feel very tired, dizzy & sore on the prescribed dose of levothyroxine but my GP won’t listen or refer me to an endocrinologist. Does anyone have any advice please?

[fuchsia-pink]

Welcome to the forum

Sounds like you're not on the right dose of levo yet. Do you have recent blood results to share [along with the related lab range, as these vary from lab to lab]. You are legally entitled to your blood results without giving a reason - though it's usually easiest to say "for my records" or to register for on-line access.

That will also allow you (and us!) to see exactly what has been tested - hopefully not just TSH. For full testing you really need, TSH, free T4, free T3 and thyroid antibodies (unless you know these are high) plus key nutrients - ferritin, folate, vit D and B12. If the GP won't test these (and I've had some success with mine by saying that these are the tests recommended by Thyroid UK) - you will see LOTS of tests here about private testing, Discounts are available on the main Thyroid UK site.

If you post your results (and lab ranges) the lovely people here will help you to understand them, In particular, it's nowhere near good enough being "in range" - you are aiming for "optimal" - and feeling fully well.

TBH it's not really worth seeing an endo (most of whom are really diabetes specialists anyway) unless and until you're on enough meds to bring your free T4 and free T3 nice and high, but you find you're still not feeling properly well x

[Hidden in reply to fuchsia-pink]

Dear fuchsia-pink, I have 2 test results, TSH 0.01 my/L (normal range 0.03 - 4.2) and T4 23.1 pmol (normal range 12 - 22). These results are because during April last year & lockdown, I gained 14lb & struggled to pass water. By the time I couldn’t eat or drink comfortably & unable to talk to a doctor I increased my levothyroxine from 75 mg to 100mg. I felt much better within 24hrs & slowly all my health issues improved. My GP is saying the numbers don’t lie & I must drop back to 75mg. I have & pain, dizziness, brain fog and breathlessness. I understood my well being is the bottom line. Some advice would be most welcome.

[greygoose in reply to Hidden]

Well, your doctor is right, numbers don't lie. Trouble is, you haven't got all the numbers! He hasn't tested FT3. And, I'm guessing that if your FT4 is 23.1 - over-range - and you still have hypo symptoms, then you aren't converting that T4 to T3. It's low T3 that causes symptoms, not the FT4 or the TSH. So, they can be as perfect as you like, but if your FT3 is low, then you're going to be hypo. That's what hypothyroidism is.

And, the only way to know how well you convert is too test the FT4 and the FT3 at the same time and compare them. I think your GP must have been absent they day they gave that class - if they gave it at all!

[Hidden in reply to greygoose]

Grey goose - thank you for the help and the giggle. I agree the doctor can’t have been in class the day they taught endocrine systems - she told me kidney function had nothing to do with the endocrine system but I can name 3 hormones that do influence filtration, flow; thyroid hormones , Adrenalin and ADH. 🤯🤣🤯 Also, the numbers were from when I felt well, in fact better than I had for 15 years but she put them down & I feel absolutely dreadful & back to needing a carer because I am so weak & dizzy I cannot negotiate a curb to cross a road or get the hoover out of the cupboard. Ggggrrrh!! What do I do?

[greygoose in reply to Hidden]

The obvious answer is: change your doctor. But, I know that's easier said than done. And, you might get another just as bad. The other solution is to get private tests done so that your conversion is highlighted. If your doctor thinks that numbers don't lie, let's see how she argues her way out of that one!

Details of private testing here:

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

If that fails, then buy your own levo and give yourself the raise you need.

[fuchsia-pink in reply to Hidden]

greygoose i absolutely correct - at a minimum you also need free T3 testing and it seems very likely that - like me - you don't convert well. It's also worth testing antibodies to see if the cause of your hypothyroidism is Hashi's - far and away the biggest cause - because if it is (a) you may well benefit from going gluten-free - even if not coeliac (and/or dairy-free) and (b) your thyroid blood results are likely to jump about wildly if you have a Hashi's "flare" [and you absolutely mustn't get a permanent reduction in meds if this is happening or you will only get worse]. Greygoose does an excellent summary of how Hashi's works.

And you should get the nutrients I mentioned tested - because you need these to be good and for many of us who are hypo this means supplements. You will see lots of posts here about improving nutrients with diet and/or meds, and the best ones to take [no multi-vitamins which are usually a total waste of money]

If you are a poor converter, it is likely that you will need more than just levo to get properly well - and for T3 meds you must see an endo (and one which is T3-meds friendly] - but that is a conversation for another time, once you have all the blood results you need.

[Hidden in reply to fuchsia-pink]

Dear fuchsia-pink,Thank you for your interesting & helpful message.

I am gluten/yeast intolerant & have a strict lifestyle that includes minimal sugar, starches and alcohol too.

The doctor mentioned additional medicines instead of increasing levothyroxine. But she is insisting my symptoms, especially the reduced kidney & lung functions cannot all be due to hypothyroidism. I live in my body (obvs but she doesn’t) & I know all my symptoms had gone & I was feeling well. This is why I am so annoyed.

I have had hypothyroidism symptoms since 2006 when my eyebrows started falling out & gained masses of weight but multiple doctors accused me of lifestyle issues & age.

It took 13 years and a private osteopath to diagnose the sensitivities & only then did the NHS start taking me seriously & test for hypothyroidism.

To finally get well & have it taken away from me is very distressing.

I wish you well.

Kind regards.

[Hidden in reply to Hidden]

Just out of curiosity: is the range for TSH really correct?! It seems odd for a lab to have 0.03 as the normal lower limit as most doctors would consider that suppressed.

[Hidden in reply to Hidden]

Dear PurpleCat71, this screenshot is from my NHS account on their website & the tests are done at Whittington Hospital London. Thank you for your input. I am delighted to find somewhere I can discuss this without being gaslighted. Kind regards

Screenshot from NHS website

[tattybogle in reply to Hidden]

Ok , that makes sense . its 0.3 not 0.03

[Hidden in reply to tattybogle]

Yes, that is what I suspected!

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate

Do you always get same brand of levothyroxine

Which brand

Many people find different brands are not interchangeable

What vitamin supplements are you currently taking

Have you had thyroid antibodies tested

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

NEVER agree to reduce dose based just on TSH and Ft4

Essential to test all four vitamins and Ft3 (and thyroid antibodies if never been tested )

[tattybogle]

Ask to try a dose between 75mcg and 100mcg for a few months . (by alternating 100/75 or by splitting a 25mcg tablet each day.)Your fT4 was only slightly over range , so maybe you do not need as big a reduction as 25mcg. doctors just do that because it's what size the tablets come in, but the body is more subtle than that. If you can get your fT4 results to scrape back into range you might be able to argue the case to have TSH a little lower than they'd like.

I have found that 12.5mcg increases / reductions are big enough to have a material effect on how i feel and on lab results, so ask GP to be a bit more subtle with dose changes, and ask for it as a 'Trial'. it will frighten them less that way.

There are ? potential issues with having fT4 over range , and if TSH can come up even a little from 0.01 it will help with your conversion of T4 to T3 which is the one that works , (T4 is just a 'travelling store' of T3 )...so slightly lower fT4 and slightly higher TSH is desirable IF you can achieve it and still manage to cross the road with your hoover

Make sure next blood test is done 24 hrs after taking last dose levo, then take that days dose after the test. This gives lowest fT4 result.

Make sure the test is First Thing (ideally 9am or earlier) in the morning, without breakfast just water. This gives Highest TSH result.

Was your latest test done like this ?

It would be interesting to know what your previous results on 75mcg were.

And as already said ...without testing T3/T4/TSH together you don't have all the numbers , so 'numbers don't lie', but they lie by 'ommission' ....... GP will probably disagree and will probably not be able to get T3 tested, but they really should ....if they are saying you are overmedicated , they should be able to prove it by showing you an over range fT3 result.

(i'll bet 50p that your fT3 is NOT over range...i've had fT4 extremely over range and TSH 0.05 and still fT3 is mid range )

[Lotika]

Hello Lala816,

I spent a long time trying to get a doctor to test my fT3 and wrote about it the other day... they kept saying TSH and fT4 all fine, not thyroid. And I kept saying “but it’s hypo symptoms” and they kept saying, “no, must be your age and gender” or “must be another autoimmune disease”, or “....”, and in the end I started to believe them and to doubt myself... as you would if more than one doctor and endocrinologist spun the same story. Anyway:

healthunlocked.com/thyroidu...

Obviously the moral of the tale is definitely find a way to get fT3 tested and try the doctor first as ideally, they should be paying for the test.