Test results.

[sklitch]

Hi all

Just had my latest blood test results back.

TSH - 0.22 (0.27-4.2)

T4 - 15.7 (9-19)

T3 - 4.1 (2.9-4.9)

RT3 has not been tested.

I'm currently on 125mcg but my Dr now wants to me to drop to 112mcg.

How do these results look to you? I'm still very symptomatic, my hair loss is ramping back up and still so tired.

Any thoughts gratefully recieved.

TIA

[SeasideSusie Remembering]

sklitch

Presumably your GP wants to reduce your dose due to the low TSH. Point out that the actual thyroid hormone levels are

FT4 - 67% through range

FT3 - 60% through range

So you are not overmedicated so there is no need to reduce dose.

In fact, you could go even higher, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well, so there is some room to raise your FT4 and FT3.

You could use the following information:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine 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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

As you are experiencing symptoms I would get nutrient levels checked:

Vit D

B12

Folate

Ferritin

Low Ferritin can cause hair loss and fatigue, low Vit D can cause fatigue.

[sklitch in reply to SeasideSusie]

Thank you for your comments SeasideSusie. What you say makes sense to me.

My Vit D was 36. Am on 1000iu a day (with 100mcg K2 Mk4)

B12 was 213 (187-883) so now supplementing with a B complex inc 1000mcg B12

My Dr said Ferratin not necessary as Iron levels good but she does focus on 'in range' as being 'beautiful' to quote her. Optimal is not on her radar.

I will do as told and drop my levo dose to 112mcg and see what happens. Though I feel I may be back up to 125mcg next month.

Thanks for the info. x

[MissGrace]

I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4, you might find the comments about hashimotos and over-medication useful in your battle to be well.

I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.

Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range.

If you have been severely hypo or hypo for a long time then TSH is no longer reliable in the way it reacts when you take T4. My endo (a thyroid specialist) has said to me ‘Let’s forget about the TSH, it’ll probably never recover.’ Magical words!

What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low. Also if you have been hypo for a long time, the feedback loop doesn’t work properly anymore. We also know that you can be taking lots of T4, but if you don’t convert enough of it to T3, you won’t feel any better.

My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important rather than the TSH.

The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.

There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. If he hasn’t - why hasn’t he? He can’t just reduce your meds on a figure and not actually look at you! You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! He has to check you are over-medicated, not just assume you are.

He should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient. He needs to turn away from his computer and look at you.

Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿‍♀️ 🥛 #fightforyourthyroid

[sklitch in reply to MissGrace]

Thank you MissGrace. Very interesting and definately something I will bring up at my next appt. I certainly don't feel overmedicated. My resting heart rate is currently 70bpm. Down from 88bpm (since I cut out caffeine). And I am diagnosed with Hasimotos.

She did suggest referring me to an endo if i am still symptomatic after the dose reduction. I'm still symptomatic on 125mcg so I imagine I will be getting the referral and taking it from there.

Thank you for your input. x

[SilverAvocado]

I'd say this is undermedication rather than over. Most people will feel well with freeT3 near the top of the range, when taking Levo only that means having freeT4 near the top, too. You've got symptoms to match, as well.