I need to get my Levothyroxine dose increased - I think !

[florasmate]

Hello people, what a great forum - I have only now found the confidence to post here, and I really need some advice. I'd had hypothyroid symptoms and high TSH since the end of 2019 but wasn't diagnosed with hashimoto's until May 2023, when my antibody test showed high TPO . I was put on a starter dose of 25ug which was increased to 37.5 ug in June. (I'm in France where average dose is given officially as 1.7 ug per kg which in my case would be 119 ug.)

But then I started to feel a bit better, I'd read a lot of information on this forum and elsewhere and had dropped gluten, started taking supplements and felt in control of myself for the first time for ages. So doctors visits to try and get prescriptions for vitamin and other tests ended in arguments, and I was refused everything I asked for. At my last visit in the middle of August I was told 'if you have FT3 and FT4 analysed we won't be able to interpret the results' ... Though finally she gave in and handwrote those two tests on a prescription for a blood test looking at inflamation and blood count, but not to be used for 3 months.

Since then I've been feeling increasingly tired and as though I'm fighting an infection. So I took the prescription to the local lab where they took the bloods, following the advice on this forum (also for some private tests, for food intolerance and some vitamins) and got the results back yesterday.

It's come up with 'better' looking thyroid results, but with an immune system disorder (hypogammaglobulinemia). I'm wondering if this is the cause, or an effect of the hypothyroid condition. I rang the doctors this morning to ask if I could increase my Levothyroxine dose to which the answer was 'no' because I have a strong sense of being undermedicated.

I have an appointment on Monday with my doctor (in whom I have almost no confidence) and wonder if there's any advice on how - even whether I should ? - to get a higher dose.

Here are some results -

20/6/23 TSH 6.83 (range 0.27 - 4.2)

4/10/23 TSH 2

20/6/23 FT3 2.8 (2 - 4.4)

4/10/23 FT3 2.95

20/6/23 FT4 1.03 (0.93 - 1/7)

4/10/23 FT4 1.09

I have high MCV (100), low leucocytes and neutrophils. Lymphocytes ok as of recent test.

TPO antibodies currently 161 (<34)

Nothing radical so far in vitamins, I take selenium because test showed low levels in August.

I'm so sorry to write such a long post! I'm sure the doc will say I'm in range and that's that. A million thanks in advance for any opinions.

[tattybogle]

list of references recommending GP's keep TSH lower .

may come in useful when discussing dose increase with GP.

healthunlocked.com/thyroidu...

[florasmate in reply to tattybogle]

Thank you so much, I'll pick a couple and translate them into French. Much appreciated.

[greygoose]

Hi florasmate, welcome to the forum.

That's a terrible way to give blood test results! Absolutely meaningless. The results of the three tests - TSH, fT4 and FT3 - should be looked at in conjunction with each other, when tested at the same time. So, we would expect to see something like this:

25/12/22

TSH result (range)

FT4 result (range)

FT3 result (range)

You cannot look at them as three unconnected results or you won't get the full picture.

I live in France, too, and I've never heard that there was an official average dose. Sounds like a bit of a nonsense to me. You need what you need and that's all there is to it.

But it doesn't surprise me that your doctor told you she couldn't interpret FT4 and FT3 - pathetic, isn't it! If a doctor says that to me - and it has happened - I just say, never mind, I can interpret them. 🤣🤣🤣

Joking apart, with a TSH of over 6, you are under-medicated!

[florasmate in reply to greygoose]

Hello Greygoose, thankyou

It's me that's messed up with the layout of the results - I don't know what I was thinking, just that I have so many lab results to pick through and I was trying to show the shift from June to Oct. on just a weeny dose. But very unhelpful I see that now !

Just now my TSH is 2 and I fear that is all the doc will look at. I have to prepare a really good case ... She doesn't speak English so I have the challenge of keeping my cool and explaining the state of things in French, I might have to resort to taking my husband this time (quelle honte!).

Here's a link to the French gov site on dosing for Levothyroxine at 25 ug (I think there's a page for each dose)

base-donnees-publique.medic...

It's nice to come across someone else dealing with the French system, perhaps we should compile a list of ridiculous things we've been told ! Upwards and onwards ...

Thanks again for your welcoming reply

[greygoose in reply to florasmate]

A TSH of 2 is far too high for someone on thyroid hormone replacement. A euthyroid TSH is around 1, and hypos usually need it lower than that because they need their thyroid hormone levels higher than a euthyroid person.

There's no shame in taking your husband with you. Very often you get better treatment if there's a witness - especially if it's a man! Sad, but true.

Thank you for the link, but I really don't think I've got the patience to wade through all that! lol I still say you need what you need no matter what guidelines are produced by people who've never had a thyroid problem!

I don't actually deal with the French system anymore. I gave that up in 2014 and now self-treat. I cannot abide doctors! They're bad for my blood pressure.

[florasmate in reply to greygoose]

That's really interesting, if a bit worrying! If necessary I may have to come back for info on how you get the meds in France... ! Thanks for the pointer

[SlowDragon Administrator]

FT4: 1.03 pmol/l (Range 0.93 - 1.7)

Ft4 is only 12.99% through range

FT3: 2.95 pmol/l (Range 2 - 4.4)

Ft3 low at only 39.58% through range

Most people when adequately treated will have Ft4 at least 60-70% through range and Ft3 at least 50-60% through range

Politely insist on increase to 50mcg daily (which is only the standard STARTER dose levothyroxine)

Retest in 6-8 weeks

Meanwhile get vitamins tested privately …..likely low

[florasmate in reply to SlowDragon]

Those are really useful figures, thanks so much SlowDragon.

Do you by chance have a reference for that information, to help me build my case?

I'm waiting on latest vitamin results.

Thank you !

[SlowDragon Administrator in reply to florasmate]

guidelines on dose levothyroxine by weight

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

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...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

healthunlocked.com/thyroidu...

jamanetwork.com/journals/ja...

See also at approx 16 mins into this YouTube clear info of dose levothyroxine

youtu.be/8Xy5i2pMtNA(Not working as expected?)

Guidelines are just that ....guidelines. Some people need more some a little less

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).

[florasmate in reply to SlowDragon]

Thank-you. Yes the NICE recommendations are similar to the French. I'm really hoping my doc will take account of my symptoms and not just test results. Fingers v much crossed !

[am111]

MCV high means vit B12 deficiency. Do you have any other symptoms of B12 deficiency?

TSH is on the higher side. Since you have symptoms, a Levothyroxine dose would help. Mine was 11 and after 50mcg dose, I have around 4 and feel fine.

[florasmate in reply to am111]

Thanks for your reply, yes I'd read that and am waiting for B12 and B9 test results with a few others. Previously B12 looked lowish but not terrible and I have started taking supplements (Thorne)

[am111 in reply to florasmate]

yes, MCV can be high due to either/both B9 and B12 deficiency. Once you start taking supplements, the B12 test will come high. Do not rely on it and continue supplementation. Don't know about folate if that also comes high once on supplementation.

Also, oral cyanocobalamin seems to have a better effect than oral methylcobalalamin, so if methyl does not work for you, you can try cyanocobalamin.

How much and of what type of B12 does Thorne have?

[florasmate in reply to am111]

Thanks, yes I won't stop I feel I may have low b12 symptoms. Thorne basic b complex has 400mcg of the methyl . Thanks for your tips

[am111 in reply to florasmate]

400mcg is low if you have absorption problems that can accompany thyroid issues and may not make much difference. If you have no other symptoms of B12 deficiency (tight muscles, nerve pain etc.), then you can continue and test MCV again after a couple of months.

If you have any other symptoms of B12 deficiency, particularly neurological symptoms, you should supplement more aggressively, for e.g. 1000mcg/day cyanocobalamin, which is the minimum maintenance dose suggested for those with absorption problems.

[florasmate in reply to am111]

Thanks so much, I'll have a proper think about this when I've got more time later in the day