Suppressed TSH again!

[Feelingrubbish]

I have an appointment with my endo tomorrow and I have just got a print out of my NHS test results ( only TSH and T4 tested). I followed all recommended protocol for this test which was at 9am. I currently take Levothyroxine (Teva) of 100mcg. I have Hashimotos (diagnosed about 5 years ago)

TSH: 0.20 (0.35 - 4.94) which is -1.09%

T4: 13.2 (9.0 - 19.1) which is 41.58%

Last time my TSH was suppressed (Sept 23), my Endo reduced my dose to 87.5mcg and scared me with 'heart problems and osteoporosis'. After this decrease, I suffered low mood, weight gain, joint pains... so bad I couldn't exercise and it hurt to stand up when sitting.

In February, I persuaded my Endo to increase my dose back to 100mcg, which she did reluctantly and even wrote to my doctor saying "Previously when on 100mch, TSH was suppressed and T4 was running on the higher end. I have explained to her the side effects of running the TSH on the suppressed side (cardiovascular side effects and bone loss) and I will forward some literature to her email as per her request."

Back in Oct/Nov 22 my TSH was <0.01 and T4 at 84% through range. I wasn't on 100mcg as she states but 75mcg. I was put on 100mcg about a year ago (April 23) and my TSH did become suppressed (approx. -4%) but my T4 never got past 50% through range.

I am at a loss a bit as my Endo is getting her facts wrong and seems to be twisting things around. She never did email the information she promised.

At the end of her letter, she wrote: "I will see her back in 8 weeks' time with up to date blood tests. If, on the higher dose of levothyroxine, TSH again becomes suppressed and she still remains symptomatic, I would suggest possibly a trial of a small dose of T3 to see whether she benefits from that."

As far as symptoms go... I am actually feeling improved. The joint pains have gone. I have more energy and I am able to exercise (cycling and yoga) and can spend all day gardening without feeling effects the next day. I feel like I'm gradually losing some of the weight I gained but still have more to go.

My main questions:

1. Should I insist to stay on 100mcg even though my TSH is suppressed?

2. If offered, should I trial T3? (I am confused about this as in previous HU responses, it was stated this would also suppress my TSH).

[GlowCoach Administrator]

From a previous post with FT3 results it looks like you convert very well and your FT4 is low in range. I doubt that T3 would help you much but just a Levo dose increase would help.

healthunlocked.com/thyroidu...

Taking T3 will lower TSH further and Endo is likely to want you to drop some Levo leaving you no better off in the end.

You really need an active B12 test which is more accurate than a serum B12 which you have had so far.

Your B12 result is still too low so you could think about adding a B12 spray or sublingual to raise your level further such as one of these:

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

Why are you seeing an Endo and could you find a different one that wasn't so fixed on TSH alone?

You should insist on staying on 100mcgs. Point out how low your FT4 is.

Take responsibility for your results and insist that your preference is to stay on this dose but you really also need an increase. Your doctor should be taking into consideration your needs and preferences nd also NICE guidelines are not mandatory.

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “

nice.org.uk/guidance/ng145

It will be essential for you to test at 9am or earlier and with a 24hr gap from last Levo dose.

[Feelingrubbish in reply to GlowCoach]

Thank you for your speedy response.

Yes, regarding T3... when it is tested (either privately or NHS), it is often around 40-60% through range, so I'm not sure why the endo thinks trialing T3 might help.

B12... my last test (from Blue Horizon) was 93.87% through range. I take Vit B complex daily (apart from a week before testing). Is this not good enough?

I see an NHS endo since my doctor couldn't help with my hair loss and considered it might be linked to my thyroid. I am now seeing a dermatologist for this and he diagnosed Female Pattern Hair Loss. I'm not sure how I could change my endo. I can't afford to go private.

[GlowCoach Administrator in reply to Feelingrubbish]

Vit B12 476 (145-569)

These are the results you posted 3 months ago. Its a serum B12 test and optimal is said to be over 500, so no its not good enough.

Which B complex do you take? Some people do need to take more.

If you can't change your endo then you need to do lots of preparation for your appointment and be strong in your conviction to stay at your current dose and even request a trial increase.

Have a good read of this thread about keeping TSH lower and some of the links there.

healthunlocked.com/thyroidu....

[Feelingrubbish in reply to GlowCoach]

I did a private test (Blue Horizon) at end of April and my Vit B12 was 543 (145 - 569) 93.87%.

I take Liposomal Vit B complex daily and was also taking Jarrows Methyl B-12 every other day. I was a bit concerned that my B12 was getting too high so was thinking I should stop the Jarrows tablets.

Thank you for the links and your comments, they are really helpful

[GlowCoach Administrator in reply to Feelingrubbish]

Having B12 over range isn't an issue as the body just expels any excess via urine. It doesnt cause any harm. Better to have too much than not enough.

Again, the result you have from April is a serum B12 and not as accurate as an active b12 test. Perhaps Blue Horizon don't offer that.

I don't think you should drop the separate B12 as your results are too close to being less than optimal.

[Feelingrubbish in reply to GlowCoach]

Okay, thank you. I'll look to see where I can get an active B12 test.

[greygoose]

Yes, regarding T3... when it is tested (either privately or NHS), it is often around 40-60% through range

Considering your low FT4, I would suggest that these FT3 results have more to do with your Hashi's than your dose of levo, because on the face of it, you appear to be converting more T4 to T3 than you actually have T4!

1. Should I insist to stay on 100mcg even though my TSH is suppressed?

Well, your TSH isn't actually suppressed at 0.2. It's low - below-range - but it isn't suppressed. What's more, your endo is just scare-mongering! Low TSH has nothing to do with hearts and bones.

Have a look at this thread:

healthunlocked.com/thyroidu...

But, yes, you are absolutely right, taking T3 does suppress the TSH, and I don't understand why your endo doesn't know this. Also, if she were to actually test your FT3 - the most important number - she would see why your TSH is low: because your FT3 is good. But I doubt if she really even knows what T3 is!

So, in answer to your question: yes. If it were me, and I felt good on 100 mcg levo, I would insist of staying on that dose and to hell with the TSH! It shouldn't be used to dose by, anyway, because it's not that reliable once it gets below 1 (and even before that...)

[Feelingrubbish in reply to greygoose]

Thank you! Your comments make me feel empowered! I do feel better on 100mcg and don't want to go back to how I felt at the beginning of this year.

I will show my endo my recent private tests which include T3. I've always puzzled as to why my T4 can be low but my T3 okay.

My private tests (Blue Horizon) done by finger prick on 29th April (a month before the NHS ones I detailed at the beginning of this post) look a bit different:

TSH: 0.5 (0.27 - 4.2) which is 3.27%

T4: 15.1 (12.0 - 22.0) which is 31%

T3: 4.5 (3.1 - 6.8) which is 58.33%

It does seem the higher my TSH, the lower my T4, but the higher my T3

[greygoose in reply to Feelingrubbish]

TSH: 0.5 (0.27 - 4.2) which is 3.27%

It really doesn't matter what the percentage of the TSH is because it doesn't work the same way as the thyroid hormone levels.

The TSH of someone with no thyroid problems is around 1, never over 2 and when it gets to 3 you are technically hypo. The ranges they attach to TSH are rubbish and meaningless and do not represent the way TSH 'works'. I'll link you to an article about ranges below.

So, TSH is a pituitary hormone. When the pituitary senses that there is not enough thyroid hormone in the blood, it increases out-put of TSH - Thyroid Stimulating Hormone - to stimulate the thyroid to make more hormone. But, it should be noted that the pituitary is a bit of a selfish gland, because it's working on its own needs, not the needs of the rest of your body.

So, the TSH more or less follows the levels of your thyroid hormones: when FT4/3 are low, TSH is high, and vice versa. (That is if your pituitary is working perfectly, that is.)

However, given that the pituitary works around its own needs for thyroid hormone, it can be satisfied, and reduce TSH to next to nothing, but the other cells in the body can be starved of thyroid hormone, and still hypo.

What's more, it doesn't distinguish between the FT4 and the FT3, so it won't tell you if you're a poor converter.

These are just a few of the reasons why TSH should not be used to dose by. But, doctors understand so little about how the system works - they just don't learn about it in med school - that they believe the TSH tells them all they need to know. It most certainly doesn't.

And although a euthyroid TSH is round 1, hypos usually need it lower because they need their Frees that much higher - usually around 75% through the range. But, this is another thing that doctors know nothing about.

The normal range: it is not normal and it is not a range

ncbi.nlm.nih.gov/pmc/articl...

[Feelingrubbish in reply to greygoose]

Thank you so much!

[greygoose in reply to Feelingrubbish]

You're very welcome.

[Xcskier in reply to greygoose]

Hi greygoose, I’m interested in your last point about the need for higher frees in hypothyroidism. Can you recommend any further reading on this?

[greygoose in reply to Xcskier]

Not really, no. Only the link I gave above. But years of observation of other people's blood test results lead to that conclusion: most hypos need their Frees around 75% through the range - or even higher - whereas euthyroid is around 50%.

[Tina_Maria]

Just to give you perhaps some more reassurance, my TSH is suppressed (not low but actually suppressed). I need my T4 at the top of the range and my T3 is about 65% through the range. My TSH has been suppressed right from the start of my therapy (levothyroxine only) and has not come down, even when a GP suggested to reduce my levo to get the TSH up. I tried it (reduced by 12.5 mcg only) and felt absolutely rubbish. Funny enough the TSH never budged. After a while I went back on my normal dose of 100mcg and never looked back. My GPs have given up on asking me to test or to change the dose, as I do the tests myself and send them the results as a curtesy.

The thing is, with this dose, I feel almost normal, I can exercise, and I have plenty of energy. Isn't this how therapy should work? To get the patient to a state where the symptoms have disappeared and we have a decent quality of life? When I reduced my dose, I felt really ill and could not do much. Isn't there a much greater chance of developing osteoporosis, if you are too ill to exercise and can't do anything to strengthen your bones?

[Feelingrubbish in reply to Tina_Maria]

Thank you Tina_Maria. I do find that reassuring and you make so much sense! It's good to hear a happy ending.

I feel much better than I did earlier in the year and will refuse to decrease if it's suggested. I don't want to go back to no energy and joint pain. It made me so miserable. I couldn't even do yoga exercises without feeling pain.

[Tina_Maria in reply to Feelingrubbish]

I think we know best how we feel, not the GP who just follows a silly guideline. And at the end of the day, it is your health that's at stake and not the GP's! Stay strong! 👍😉

[Hidden in reply to Tina_Maria]

I sometimes think this is the only diseases where doctors don’t care about us feeling better, they just want a normal TSH…when we finally start to feel normal, doctors panic because our TSH is low…it is such a vicious circle and the reason I gave up on doctors and decided to self-treat…

[tattybogle]

your TSH is actually 'low but not supressed' which is not the same as 'supressed' .

and when interpreting research about risks this is an important distinction that is often missed by GP's who have only been taught the basics, and by NHS guidelines that are simplistic and miss out the detail , so the truth gets mangled along the way, (there's no excuse for endo's not knowing it, but a lot of em don't seem to).

These papers can be used to inform yourself (and any GP/ Endo's who haven't kept themselves properly informed !) that there is very good evidence that TSH between 0.04 and 0.4 in patients on levo is not actually any more risky than TSH in range is : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

yes ~ insist on staying on 100mcg for the time being

emphasise that fT4 is not at all high.

emphasise that you feel well enough to be consistently active.

i think that as weight / energy etc are going in the right direction on this dose , things may continue to improve steadily if you don't rock the boat by fiddling with dose at this point.

you may need to increase/ decrease dose at some point if you feel worse again, but there's no benefit to fiddling with dose while you feel well.

same with adding T3 ... at the moment there's really no point if you can feel well without it , some people do need it , but it's a lot of hassle one way and another.

(however , it's very good you have found an endo who is prepared to consider prescribing T3 ...many of them won't even consider it)

[Feelingrubbish in reply to tattybogle]

Thank you tattybogle - really useful information and advice. I feel much more prepared for my appointment. It's interesting that my endo said my TSH was suppressed last September and it was only 0.12. I shall see what she says tomorrow about 0.20.