Normalise the TSH to keep doctors happy? - Thyroid UK

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Normalise the TSH to keep doctors happy?

16 Replies

I have just spent two days in hospital for a suspected autoimmune condition ( autoimmune Encephalitis) after they found anti-glycine antibodies in my blood recently. I have had a spinal fluid tap and the results will take +/10 days.

However, they also had my thyroid tested as they suspect a connection between Hashimoto’s and AE. This morning, I was told that I am hyperthyroid and will be put on Euthyrox (100 mcg daily) until my TSH is between 1-2.

My current labs on Thyroid-S:

TSH <0.01 (0.4-4.5)

FT4 1.2 (0.7-1.5)

FT3 3.2 (1.7-3.7)

I have been on beta blockers (Tenormin, 50 mg daily) to try to get my resting pulse down (it’s usually between 80 and 100 bpm). I was told they will raise it to 100 mg a day until my TSH has normalised and I’m euthyroid.

What I wonder is: does anyone have any idea what could cause a racing heart like that? I’m also on blood pressure medication and my BP seems unaffected by recent weight loss (-25 kilogrammes). In other words: I still need the medication.

I have been considering going back on T4 only long enough for the TSH to normalise, and then repeat this once a year to keep them happy. But, apart from feeling sluggish during that time, does anyone have any idea how it works in practice? I have had a suppressed TSH for years, and I know there is something called the negative feedback loop. So, apart from the practical problems, I guess it’s not so easy to just go off NDT long enough for the TSH to end up where doctors want it, only to go back on NDT after going to the lab...?

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16 Replies
Clutter profile image
Clutter

Anna69,

The doctor thinks you are overmedicated because TSH is suppressed. No other reason because FT4 and FT3 are within range. Is the hospital doctor an endocrinologist and did s/he know you are seeing thyroid specialists?

Why do you care about keeping doctors happy? If you want to follow their protocol that's fine but please don't manipulate your meds and thyroid levels to keep doctors happy or to pass some imaginary TSH test.

TSH set point can become low. My TSH has been suppressed <0.01 since 2013 but 3 dose reductions over 12months didn't budge my TSH although FT4 and FT3 dropped. I suspect I would have to become massively undermedicated or stop thyroid medication before TSH will respond.

in reply toClutter

Yes, it’s an endocrinologist and she said that, normally, the TSH on its own is enough to decide whether someone is hypo, hyper or euthyroid...

I don’t care about keeping doctors happy, but hate it when they interfere with thyroid treatment for unrelated matters...

Clutter profile image
Clutter in reply to

Anna69,

Well if she thinks TSH alone determines thyroid status I'd stick with the Hertoghe doctors.

in reply toClutter

Ps. No, did not mention specialist as doctors don’t like Hertoghe and NDT. I did not even mention the latter, but simply said I take T3 along with T4...

SlowDragon profile image
SlowDragonAdministrator in reply to

You results look perfect.

You have Hashimoto's, so what do you supplement for low vitamins

Have you had vitamin D, folate, ferritin and B12 tested recently

What about gluten free diet

Low vitamin levels and/gluten can affect heart, we need very good vitamin levels to help thyroid hormones to work

in reply toSlowDragon

I am taking a multivitamin supplement called Optiwoman purely for the sake of convenience.

I am not GF, but eat very little gluten (far from every day or even every week).

I can check my latest labs and post them here.

SlowDragon profile image
SlowDragonAdministrator in reply to

Sorry almost gluten free is the same as eating it everyday as far as thyroid is concerned. These links explain why

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

Most multivitamins contain iodine, definitely not a good idea at all with Hashimoto's

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

in reply toSlowDragon

I know, iodine is a real problem...so taking each vitamin/mineral separately would most likely be preferable, right...?

in reply toSlowDragon

Truly scary reading...

greygoose profile image
greygoose in reply to

Optiwoman is dire! Folic acid rather than methylfolate; cyanocobalamin rather than methylcobalamin; magnesium oxide rather than the myriad of good magnésiums; iodine - of course! - and iron and calcium which, together, just about annihilate everything else. You are just throwing you money down the drain.

in reply togreygoose

Thanks! Yes, I realise that now...

humanbean profile image
humanbean

The things that raise my own heart rate :

1) Low iron.

2) Eating too much sugary stuff.

in reply tohumanbean

I’ll try to have my iron levels tested.

Sugary food, sure...! The hospital food is awful...carbs and bad fats, no protein anywhere to be seen...!

SlowDragon profile image
SlowDragonAdministrator in reply to

Get vitamin D, folate, B12 and ferritin/iron tested

Low magnesium can upset heart

Yes once tested, treat the vitamins that are low separately

If you have typical Hashimoto's vitamin deficiencies then a multivitamin with do little or nothing to improve these

Vitamin C, selenium and magnesium can be supplemented without testing

Only ever start one supplement at a time and wait 2 weeks to evaluate before considering adding anything else

I have just been informed that I will be on 100 mcg of T4 daily from now on. When I pointed out that I was on 200 mcg daily before switching to the T3/T4 combo drug (which is what I call NDT), the answer I got was ‘Nobody should take more than 100 mcg daily’...needless to say, I don’t intend to follow their advice...but this ‘one size fits all’ approach is really scary...I was also told I should be happy I don’t have a goiter caused by drug-induced hyperT, and we now need to make sure I don’t develop one in the future...

I find this article interesting; not that I expect any conventional doctor to agree...but it strengthens my resolve not to go back on thyroxine for any reason, including to please any doctor believing that an in range TSH is all that matters in the management of hypothyroidism:

press.endocrine.org/doi/10....

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