How long did it take everyone to get stable on the right dose?

[Salphy]

Feeling fed up and just wondering how long it took everyone to find the right dose?

I started levothyroxine as a trial in March 17 due to being borderline subclinical but very symptomatic. I felt much better when my levels were good on 75mcg but it was very short lived now I feel back to square one and my latest increase has done nothing.

I feel like my levels have never really reflected how I'm feeling. I see others with tsh way higher and t3 and t4 out of range and feel like if it was me I'd be dead. But then feel like I must just be being soft and should be grateful for where I am but I'm just not functioning and really starting to struggle in work. Considering it was only supposed to be a trial and I've only ever been boderline I thought it would be much quicker or I'd atleast be feeling a bit better by now. All my vitamins are now optimum from supplements and I'm gluten free. Thanks x

[Nanaedake]

Has your GP run general health checks and blood tests for liver, kidneys etc? It might be something else causing problems.

[Salphy in reply to Nanaedake]

I had fbc and lots of other tests done in March last year. Everything was OK apart from some vitamins which I've been treated for and hormones which lead to my PCOS diagnosis. Nothing else came up but I'm going to repeat it before my endocrinology appointment which I'm on the waiting list for. Thanks x

[ShinyB]

I go a bit cross eyed looking at graphs, my brain doesn't register them very well! But your latest results look like you are converting T4 to T3 less well on the increased Levo dose. I'm wondering if you might be converting the levo to reverse T3. I felt significantly worse for increasing my levo dose and only started to feel a bit better when I reduced my levo and added in T3. (I'm now actually on just T3).

Divide your fT4 by your fT3 result - above 3 I think is the figure that shows you're not converting too well. Hopefully someone will verify this as my memory is still problematic...

[Salphy in reply to ShinyB]

Thanks I hadn't thought about that. It came up 3.8888888...

There's a few that have been over 3 even when the results were good and I felt quite well.

I'm so tempted to start adding t3 and see if it helps me. Just scared of the nhs refusing to continue treating me x

[ShinyB in reply to Salphy]

Oh I hear you! I sometimes come out in a cold sweat at self medicating. Hopefully you will get more replies from others more experienced than I am. Best of luck x

[Salphy in reply to ShinyB]

Thank you

Do you self medicate or nhs? X

[ShinyB in reply to Salphy]

Self medicating now and finding it scary!!

[Salphy in reply to ShinyB]

if it gets you feeling well will be the best thing you've done. Best of luck with it I don't think I'll be too far behind you x

[ShinyB in reply to Salphy]

ah thank you I don't feel tooo bad until I have an appointment with my GP and they make their black and white statements about TSH, and the bit of me that used to implicity trust mainstream medical knowledge starts to quiver and quake lol.

Maths and graphs are not my strong point (understatement!) but have you worked out your conversion rate for each date? That might be worth adding to your chart to help you see what's happening.

[Salphy in reply to ShinyB]

I'd be the same. If we weren't planning pregnancy then I don't think I'd be too bothered (I work for the nhs so I don't feel too bad about fighting my corner when it's my decision and my body. I'd rather live a shorter life than just exist for longer) I just don't fancy being told off and looked down on as selfish for self treating when responsible for another human lol x

[Salphy in reply to Salphy]

I have done it's quite up and down to be honest i think? Maybe gradual increase with the odd outlier?

2.674

2.534

2.859

2.988

3.523

3.512

2.777

3.888

[ShinyB in reply to Salphy]

Kell-E I'm tagging Kell-E as she has helped me previously with this sort of thing. x

[Salphy in reply to ShinyB]

Thank you x

[Kell-E in reply to ShinyB]

The TSH seems too high for the fT3 and fT4 readings. diogenes mentioned that the free T3 and T4 assays can be interfered with in certain situations. I noticed the high antibodies and I wonder if this is one of those situations.

[jgelliss in reply to ShinyB]

ShinyB

LOVE your sense of humor . Laughter is the Best Medicine .

[ShinyB in reply to jgelliss]

Thank you! I worry as most of the time I'm not even trying to be funny lol. I just bimble through life and try to extract some humour along the way.... It's the only thing that keeps me (relatively!) sane...! x

[jgelliss in reply to ShinyB]

ShinyB

Keep smiling and let others smile too . It's great for your and others health too . It's a win win situation .

[Clutter]

Salphy,

You are undermedicated to have TSH 2.52. Ask for dose to be increased and retest thyroid levels 6 weeks later.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

The TSH of women planning conception should be in the low-normal range 0.4 - 2.5. When pregnancy is confirmed dose is usually increased by 25-50mcg to ensure good foetal development. NICE also recommends that hypothyroid women planning pregnancy should be referred to endocrinology. cks.nice.org.uk/hypothyroid...

Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee

13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).

onlinelibrary.wiley.com/doi...

According to the ATA First Trimester TSH levels between 2.5 and 5.0 are associated with in-creased pregnancy loss

thyroid.org/patient-thyroid...

[Salphy in reply to Clutter]

Thanks clutter. They last increased 6 weeks ago but it's not done anything if anything have got slightly worse. I'm going back and expecting them to increase again. Just getting fed up of it taking so long and keep needing to increase.

Interesting that it says combination therapy is not recommended in pregnancy. I wonder why and if that's because there's any additional risk or just because they don't like to recommend it for anyone?

[Clutter in reply to Salphy]

Salphy,

Probably because there is no evidence to show T3 is safe during pregnancy.

[SlowDragon Administrator]

Your under medicated to have TSH so high

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Ask GP to test vitamin D, folate, ferritin and B12 too these are very often too and need supplementing to bring to optimal levels

Add results and ranges if you have them already.

NICE guidelines saying how to initiate and increase Levo. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...