Low TSH and feeling awful

[Woochan]

Hi Everyone, I have just got off the phone to my Endocrinologist and I'm feeling pretty hopeless about things right now. I am hoping that sone of you will be able to give me some advice.

I have hypothyroidism and have been taking 2 grains of natural dessicated thyroid for around 8 years and have felt well on it. I also have fibromyalgia which has been well managed and has never effected me too badly.

In the spring last year I suffered from severe fatigue and a big fibromyalgia flare which left me in bed for weeks. My blood tests showed my TSH was suppressed at 0.03 mu/L

(Range:0.32 - 4.94 mu/L). My T4 was 10 pmol/L

(Range:9 - 19 pmol/L). Historically I have always felt better with my T4 at the top of the range. My GP reluctantly agreed that I could try increasing to 3 grains. She did a referral to my Endocrinologist for their opinion.

I quickly started to feel better after the increase and in the 6 months I was waiting to see the Endocrinologist life got back to normal. I started a new job training to be a mental health practitioner for kids and started a post grad uni course as part of my training. At the end of November I saw my Endocrinologist and she said that the amount of T3 in my NDT was far too high and asked me to reduce down again. She said that the higher dose was masking my symptoms but would be doing damage to my heart, bones etc. My blood results were:

TSH 0.02 mu/L

Range:0.27 - 4.2 mu/L

T4 11.5 pmol/L

Range:11.1 - 22 pmol/L

T3 9 pmol/L

Range:3.1 - 6.8 pmol/L

I couldn't argue with the blood results so reduced back to 2 grains. By January I was feeling just as ill as I did back in the spring. Extremely exhausted and having another big fibro flare. I have been in bed for the last month with no improvement. In January my GP retested my bloods and my TSH was now just in range at 0.39 mU/L (Range:0.32 - 4.94 mU/L).

My GP and Endocrinologist now want me to stay where I am with my thyroid meds and don't have anything else to offer me in terms of suggestions to help me feel better. Despite the fact that this has ruined my life. My employer has been very understanding, but I have had to withdraw from my Uni course until next year and will most likely have to be medically redeployed to another role. This is a job that I waited years for the opportunity to do 😔. Does anyone here have any insights or suggestions that might help?

[Jazzw]

2 grains to 3 grains (and back again) is a huge jump. You can adjust by quarters and halves.

Looking at your results, 2 and a half might be nearer your sweet spot?

[greygoose in reply to Jazzw]

Exactly what I was going to say! But they do like to dose with a sledgehammer, don't they! No finesse.

[SlowDragon Administrator]

Try 2 and 1/4 grains ….retest in 8 weeks

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH and most consistent results. (Patient to patient tip)

NDT ….day before test split as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

What vitamin supplements are you taking

When were vitamin D, folate, ferritin and B12 last tested

is your hypothyroidism autoimmune

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Only do private testing early Monday or Tuesday morning.

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Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

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IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:

[SlowDragon Administrator]

also on NDT Ft4 is often very low

Some people are fine with this others find it better to improve Ft4 by adding a little levothyroxine alongside NDT

[pennyannie]

Hello Woochan :

Once taking any form of thyroid hormone replacement the TSH is the least important blood test reading -

When optimally medicated on NDT you will likely have a suppressed low TSH and that does not matter - and the TSH has no bearing on the symptoms being tolerated.

We track on the T3 - the most important of the all the blood test results - and this needs to be measured around 10 - 12 hours after your dose of NDT and be from a fasting blood draw blood test -

Your T3 is likely going to be in the top quadrant of it's range - your T3 result is is just a little over the range and probably with a dose reduction of 1/4 or 1/2 a grain NDT you will be in the range -

and the T4 can be much lower in its range than when on synthetic thyroid hormone replacement options and this does not matter if you feel well.

We also adjust NDT in 1/4 grain increments and decreases

No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal levels -

Do you have any current readings for ferritin, folate, B12 and vitamin D ?

[Woochan]

Thank you all for the advice.

My B12 and folate were fine in my recent test. I have B12 injections and take folate. My ferritin was low in January. My test a week ago showed it is now in range but still at the bottom. I haven't had the result of my vitamin D test yet, but have been taking supplements since September so I expect it to be ok.

I didn't take my NDT on the morning of my tests and I don't eat breakfast so probably hadn't had more than a cup of tea before the tests. I'll make a note of all your suggestions for the next one though.

I don't have another NHS T3 test scheduled until my next Endo appointment in 6 months. I think I'll try going up gradually this time and see how I get on. Then I can test privately if I'm feeling better and see what effect it has had on my bloods.