Preparing for Endo appointment, new blood tests with lower TSH

[ShonaGreen]

Hi,

I've got my first appointment with an endocrinologist this week so I had new blood tests from Blue Horizon (done at 7am before eating, drinking or taking any medication). This shows my lowest TSH level so far and also the first time I've had Total T4 tested so unsure of that result.

They've commented that I should consider reducing my Levothyroxine level to avoid hyperthyroidism. I started taking 50mg in April 2019 for hypothyroidism and increased to 75mg every second day from mid June as I was feeling unwell. My first blood tests in April showed low TSH, low free T4 and low free T3 levels. Since then, my TSH has kept on decreasing whilst my free T4 and free T3 have increased somewhat but not near to optimal levels. I still have fatigue, low energy levels, headaches etc so I felt that I was still undermedicated. I'm also taking Better You sprays for Vit D and Vit B12, along with Igennus Super B Complex.

I'm concerned that the endocrinologist will also suggest lowering my dose. My GP doesn't think I have a thyroid problem and begrudgingly did a private referral when I questioned him about the possibility of central hypothyroidism or pituitary problems, especially as recent cortisol saliva and blood tests showed low levels throughout the day.

I just want to make sure that I am totally prepared for the appointment and ready to make a good case for reviewing medication levels and further tests on adrenal glands etc. Any advise or suggestions would be much appreciated, thanks for your help!

[SlowDragon Administrator]

Total T4 is very low

FT4 only 30% through range ....so also low

FT3 is terribly low

Apart from TSH.....All these results suggest you need dose increase

Possible central hypothyroidism or DIO2 gene variation is possible reason

Vitamin D too low, aiming for at least around 80nmol and around 100nmol may be better.

Has this improved from previous levels?

How much are you taking

B12 is too low.

How much B12 have you been taking?

Were you tested for Pernicious Anaemia before starting on any B vitamins

Folate is ok

Ferritin is good

Do you always get same brand of Levothyroxine?

[ShonaGreen in reply to SlowDragon]

SlowDragon thanks so much for your quick response. In April, my Vit D was 57.9 so its slowly increasing, I've been taking the Better You 1000 Vitamin D spray. But my Vit B12 has decreased from 489 (in April) and I've been taking the Better You B12 spray 3 times a day.

I had some further antibody testing last month and it was negative for Pernacious Anaemia. Also recently tested for D102 and negative too.

I've only had the Teva brand of Levothyroxine since starting it in April. I've had no problems with it but maybe I should ask for another brand?

[SlowDragon Administrator in reply to ShonaGreen]

Yes possibly you might try different brand.....Teva is lactose free and contains mannitol

Mannitol apparently changes gut flora

bmj.com/content/360/bmj.k71...

If B12 is dropping on 3 x spray and Igennus Super B ....perhaps you should be having B12 injections

[SlowDragon Administrator]

This first test also suggests central hypothyroidism

healthunlocked.com/thyroidu...

Plus your very low cortisol results

Have you had cholesterol tested? If cholesterol levels are high, this also suggests hypothyroidism

Also has prolactin been tested?

Ultrasound scan of thyroid might be helpful

Or MRI of pituitary

[ShonaGreen in reply to SlowDragon]

SlowDragon I've not had my cholesterol tested, will look into this. Prolactin done in April, was 298 (range 102 - 496). I had an MRI of my head in October 2018 due to severe headaches. It was all clear and neurologist thought it was chronic migraines and prescribed amitriptyline which helped a lot. The rheumatologist I saw recently is going to have another look at the MRI as she things any pituitary issues would have been picked up then. No ultrasound scan of thyroid so far.

[greygoose in reply to ShonaGreen]

As your FT3 is so low, you are pretty certain to have high cholesterol. Doctors don't know about the connection, so getting your cholesterol tested is risky, they might start nagging about taking statins.

As for Central hypo, what has your highest TSH been? Looking at the MRI may not give her the answer she's looking for, problems don't always show up in an MRI. What she should be doing is testing the other pituitary hormones, to see if there is a problem with the pituitary; and doing a TRH test to see if it's a hypothalamus problem.

[ShonaGreen in reply to greygoose]

greygoose thanks for your message. I'll ask about the cholesterol testing but can do a private test if needed.

The highest TSH I'm aware of was 2.52 in March 2019, done as part of full blood check before thyroid levels were checked in April when it was 1.92. I then started taking 50mg Levothyroxine and TSH reduced to 0.577 in June, 0.30 in July and now 0.17.

The GP did some tests that I think were checking for pituitary issues (oestradial, FSH and LH) and these were normal. No TRH test done as far as I know.

[greygoose in reply to ShonaGreen]

So, I take it that when your TSH was 1.92, your FT4 and FT3 were very low. Despite what doctors think, we cannot just take one number and make a judgement. We need to take all three into consideration.

GPs don't normally do tests for pituitary issues, you need an endo for that.

You can have a TSH specific pituitary problem, where it's just the TSH that is low. The others are ok. Or, you can have a hypothalamus problems where the hypothalamus does not secrete enough TRH to stimulate the pituitary to produce TSH. If you'd had that tested, I think you'd know about it, because I don't think it's a simple blood test. And, only an endo can test it.

[ShonaGreen in reply to greygoose]

Thanks greygoose , when my TSH was 1.92, free T3 was 2.8 (range 3.9 - 6.8) and free T4 was 11.8 (range 11.0 - 26.0). I had a private blood test and brought results to GP as I was feeling very unwell at the time. I was lucky enough to see a new GP who was really helpful and prescribed Levothyroxine which has made me feel better but still not my usual self. Unfortunately I haven't been able to see this GP again and my usual GP doesn't think I have a thyroid problem, I think he only referred me to an endocrinologist to get me to leave him alone for a while! So I'm keeping everything crossed that the endocrinologist will be helpful, she's been seen by another person on the forum but not on the thyroid UK, list, the nearest one is quite far away but I'll travel to see him if I have too!

[greygoose in reply to ShonaGreen]

hen my TSH was 1.92, free T3 was 2.8 (range 3.9 - 6.8) and free T4 was 11.8 (range 11.0 - 26.0)

There's your proof that you have Central Hypo - it can't get much clearer than that. But, I don't suppose your doctor had ever heard of Central hypo.

I was lucky enough to see a new GP who was really helpful and prescribed Levothyroxine which has made me feel better but still not my usual self.

Well, of course you don't feel yourself. Your FT3 is still under-range. It should be nearer the top of the range - or at least around mid-range. You need an increase in dose - it should have been increased six weeks after starting it.

I hope the endo helps.

[ShonaGreen in reply to greygoose]

I'm keeping everything crossed greygoose as I'm about to run out of my prescription for Levothyroxine! The nice GP prescribed 50mg initially and I got an early prescription when going on holiday so had an extra month's supply. When I started to feel unwell again in June, I thought it was the right time to increase up to 75mg. I could only get an appt with the not so nice GP but then he told me that I shouldn't be on Levothyroxine at all. He had contacted a local endo to ask for advise on my situation, who responded that as my results are in normal range then it's likely any improvement is just a placebo affect and it'll do more harm than good to keep me on medication. So I've increased my dose to 75mg every second day with the extra supply I have, but if the endo referral doesn't work out well then I may be self-medicating soon!

[greygoose in reply to ShonaGreen]

Oh, they do talk such rubbish! Your FT3 is under-range. I hope that's not the same endo you're going to see.

[ShonaGreen in reply to greygoose]

Funnily enough the GP initially tried to refer me to that endo but I politely declined saying I would do my own research!

[greygoose in reply to ShonaGreen]

Good for you!