TSH rising after increased Carbi

[Garbbo]

Hello everyone, hope someone had similar experience and could give me some advise.

I’ve been on Carbimazole for 8 months and for some reasons my TSH was low all the time. Going from 0.01 to 0.02.

Endo increased Carbi from 20 to 30 mg.

April results: T4 11.7 (9-23), T3 3.9 (2.5-5.7), TSH 0.02 (0.3-4.2)

June results: T4 7.5 (9-23), TSH 15.13 (0.3-4.2).

At this stage he reduced the dose by 5mg per day, so from 30mg to 25mg.

I think I was feeling better with my previous results, I feel overmedicated and he still keeps me on quite High dose of Carbi.

Please help!

[Cat4health]

Hi Garbbo, unfortunately you have another useless Endo. Your tsh is coming up because you are hypothyroid now as a result of the meds. Endocrinologists do this sometimes cos they think they have to get tsh within range n everything will be okay. Unfortunately they are wrong, very very wrong. If you have Graves then its the antibodies that are suppressing your tsh n they will only reduce once the immune response reduces. Unfortunately pushing you hypo is more likely to increase your antibodies. So i would suggest you go to Elaine Moore.com, she has supporting literature (proper medication research) for everything I've just said. Take those articles to your gp or endo, if u can but that appointment is probably a while away, and tell them this is the best evidence on how to treat Graves. You want to be at the top of the range for ft4 and on the lowest carbimazole dose that achieves that.

[Garbbo in reply to Cat4health]

Thanks for your reply! I’ll definitely go and check elainemoore.com.

My next appointment with Endo will be in the end of August. He’s so ignorant with me he never asks how I feel and just tries to get rid of me ASAP. I have to try and find another one....

[Cat4health in reply to Garbbo]

Yes, I think you're right there. You deserve compassionate care from someone who actually knows what they are talking about. It is a hard search but self education helps identify the frauds faster. Best of luck n I'm here if you wanna discuss =)

[Valarian]

How much carbi are you on at the moment ?

My TSH was suppressed for quite a while, but although it was on the screen when we reviewed my results, my endo and I never discussed TSH at all until the point where he noted that it was back in range.

It isn’t unusual for TSH to remain low for months in hyper patients, the main thing is to get FT4 and FT3 in range, and keep them there. That’s in range, not below, hypo symptoms are truly horrible after months of being hyper. It isn’t unusual for those being treated on a titration basis to dip below range occasionally, and it isn’t usually a problem, but when it happened to me, they reduced my Carbimazole to get my thyroid levels back in range rather than chasing TSH .

If you are continuing to feel awful, I would go and see your GP and ask for your next blood test to be brought forward. Mention your concerns, and hopefully they will do their own research (you could point them at some of the suggestions below) and draw an independent conclusion rather than simply adopting a ‘consultant is always right’ approach .

Some reading, if you are interested !

thyroiduk.org.uk/tuk/resear...

elaine-moore.com/blog/tabid...

academic.oup.com/jcem/artic...

[Garbbo in reply to Valarian]

Thanks for your help! He reduced the dose from 30mg to 25mg. I was thinking to take less cause I don’t feel well. I have appointment with my GP tomorrow evening will see what she says!

[Valarian in reply to Garbbo]

That’s still a pretty high dose for someone whose results are already below range. If you’ve got Graves’, you will need to remain on Carbimazole for twelve to eighteen months. They don’t like to reduce the dose too soon, in case your thyroid takes off again , but you’ve been on carbi for eight months, and within range for around three. Do you know what your March results were , or how long both FT4 and FT3 have been in range ?

As you’ve got an appointment with the GP coming up anyway, I wouldn’t reduce the dose myself, but discuss your concerns with your GP and see if maybe she will talk to the endo.

Every time I see an endo (and it hasn’t always been the same one) their first question is “how have you been feeling?”

[Garbbo in reply to Valarian]

My results:

Dec 2017: T3 4.2 (2.5-5.7) T4 15.2 (9.0-23),TSH 0.01 (0.3-4.2

January: T3 3.9, T4 12.8, TSH 0.02

February: T3 4.00, T4 13.5, TSH 0.01.

April: T3 3.9, T4 11.7, TSH 0.02.

May (after increased Carbi):

T4 7.5 (9.0-23), TSH 15.13.

And he says in his letter: the recent increase in her Carbimazole dose has controlled things well, if not slightly over our target range, and at this stage, she can reduce the dose of this by 5 mg per day, so from 30mg to 25mg initially...

As you can see my T3 and T4 have been in range for around 6months, but not anymore....

[helvella]

Can I get this right? Your increased dose of Carbimazole was due to the April results?

Your FT4 and FT3 results were already low in range. Absolutely NO reason to increase.

As Valarian rightly says, it is common for TSH to remain low, or very low, for months after FT4 and FT3 have become sensible rather than high. It takes patience and understanding to realise that the dose should have remained the same - or even been slightly reduced.

You are driving along the motorway at 120 mph. You suddenly realise that is not nice - you feel unsafe, don't want to lose your licence, whatever. You lift your foot off the accelerator. You gently slow down. When you get to 75, you suddenly decide to put the brakes on. It's not at all surprising that all of a sudden you feel even worse. If you were going to slam the brakes on, it should have been when you really needed to slow down, not when you were already just about to be at your target speed.

[Valarian in reply to helvella]

The only way I can see it might make sense is if the April frees results, while still in range, were up on the previous set. - so an upwards trend, which given the dose of Carbimazole might indicate a bit of a relapse. However, you might then expect to see more frequent blood tests. Seems a bit dubious anyway

[Garbbo in reply to helvella]

Its not my Disease, but the treatment I’m getting upsets me a lot...

[Valarian in reply to Garbbo]

Well, if they aren’t even asking how you feel ...?! To be honest, I would say hypers generally get better treatment than this. Let’s hope your GP can get things sorted - she may not be actively involved in treating hyper patients herself, but she will certainly know all about hypo symptoms.

[Valarian]

So there was a slight increase in Feb, but it was very slight, and down again in the April, which I believe was without any change to your medication at that point.

Interesting comment about ‘target range’ - as I understand it, the top of the target range for hypers is usually a couple of points below the top of the reference range (which gives you some space for normal fluctuations ). The target isn’t usually through the bottom of the range and out the other side !