Endo appointment next week Low T4

[Jonnyseven]

Hi

Had low thyroxine for many years now, began self medicating for about a year before stopping on endo's advice earlier this year as they wanted a baseline to work from. I am a 50 year old male who exercises regularly unless I feel particularly fatigued.

I've taken a few tests via medichecks and did all the things advised by this forum, i.e. in the morning before eating and took no supplements for a couple of weeks before testing. I am currently taking no medication.

These are my results, please could some knowledgeable members advise as to what the correct course of action should be so that if the endo says different I can ask why this course of treatment and not another. Thanks for any advice.

28/07/22

Inflammation

CRP HS 3.91 mg/L (Range: 0 - 5)

Iron Status

Ferritin 183.0 ug/L (Range: 30 - 400)

Vitamins

Folate - Serum 6.03 ug/L (Range: > 3.89)

Vitamin B12 - Active X >150 pmol/L (Range: 37.5 - 150)

Vitamin D 71 nmol/L

<25 Deficient

25 - <50 Insufficient

50 - 75 Adequate

>75 - 200 Optimal

(Range: 50 - 200)

Thyroid Hormones

TSH X 4.96 mU/L (Range: 0.27 - 4.2)

Free T3 4.67 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 9.5 pmol/L (Range: 12 - 22)

Autoimmunity

Thyroglobulin Antibodies 13 IU/mL (Range: < 115)

Thyroid Peroxidase Antibodies <9.0 IU/mL (Range: < 34)

16/03/2022

Inflammation

CRP HS 2.83 mg/L (Range: 0 - 5)

Iron Status

Ferritin 190.0 ug/L (Range: 30 - 400)

Vitamins

Folate - Serum 5.85 ug/L (Range: > 3.89)

Vitamin B12 - Active 136.0 pmol/L (Range: 37.5 - 150)

Vitamin D 92 nmol/L

<25 Deficient

25 - <50 Insufficient

50 - 75 Adequate

>75 - 200 Optimal

(Range: 50 - 200)

Thyroid Hormones

TSH X 4.76 mU/L (Range: 0.27 - 4.2)

Free T3 4.47 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 10.9 pmol/L (Range: 12 - 22)

Autoimmunity

Thyroglobulin Antibodies 13 IU/mL (Range: < 115)

Thyroid Peroxidase Antibodies 11 IU/mL (Range: < 34)

[SlowDragon Administrator]

28/07/22

Ferritin 183.0 ug/L (Range: 30 - 400)

Folate - Serum 6.03 ug/L (Range: > 3.89)

Vitamin B12 - Active X >150 pmol/L (Range: 37.5 - 150)

Vitamin D 71 nmol/L

Thyroid Hormones

TSH X 4.96 mU/L (Range: 0.27 - 4.2)

Free T3 4.67 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 9.5 pmol/L (Range: 12 - 22)

Autoimmunity

Thyroglobulin Antibodies 13 IU/mL (Range: < 115)

Thyroid Peroxidase Antibodies <9.0 IU/mL (Range: < 34)

16/03/2022

Ferritin 190.0 ug/L (Range: 30 - 400)

Folate - Serum 5.85 ug/L (Range: > 3.89)

Vitamin B12 - Active 136.0 pmol/L (Range: 37.5 - 150)

Vitamin D 92 nmol/L

Thyroid Hormones

TSH X 4.76 mU/L (Range: 0.27 - 4.2)

Free T3 4.47 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 10.9 pmol/L (Range: 12 - 22)

Differences between two tests

Vitamin D and folate dropping

TSH too high

Ft4 below range and dropping

Ft3 dropping

You clearly need starting back on levothyroxine

How much levothyroxine were you taking before?

Ever had ultrasound scan of thyroid

20% of Hashimoto’s patients never have high thyroid antibodies

[Jonnyseven in reply to SlowDragon]

Thanks for your reply, I was self medicating and went up to 150mcg which I found a little high then settled at 125 which seemed ok for me which was the point I stopped taking after seeing the endo back in January. I've never had a scan of the thyroid.

[SlowDragon Administrator in reply to Jonnyseven]

Private scan £100 approx

If in London

thyroiduk.org/help-and-supp...

[Hedgeree]

Hi Jonnyseven,

Sorry I can't offer any advice as I'm in a similar situation with a low and now below range FT4 and have had so for many years. I'm having lots of blood and other tests done but am currently not going to be prescribed levo. Only recently been told this despite being symptomatic. They are saying a below range FT4 is 'my normal.'

Has your endo made any suggestions for your possible treatment? How do you feel? What are your symptoms? Is it mostly fatigue that's a problem for you?

Are you still seeing the endo that suggested you stop self medicating?

Are you a vegetarian or vegan?

Apologies for all the questions 😊

[greygoose]

Well, the low TSH and very low FT4 would suggest Central Hypo. Central Hypo is when the problem lies with the pituitary (secondary hypo) or the hypothalamus (tertiary hypo), rather than the thyroid itself (primary hypo). For some reason, the pituitary is not making enough TSH to stimulate the thyroid to make enough thyroid hormone to keep you well. Could be that there's something wrong with the pituitary - a benign tumour, or something - or, it's not getting the stimulus it needs from the hypothalamus.

The problem is that the majority of doctors have never even heard of central hypo, let alone diagnosed a case. So, they need a lot of convincing to start investigating. That's why they dismiss is with trite phrases like 'below range FT4 must by your normal'. Which is pretty rediculous, when you think about it.

So, if the endo says you can't be hypo because your TSH is good, ask him about Central Hypo, see what he says.

[Hedgeree in reply to greygoose]

Hi greygoose,

From my own experience I know how difficult it is to get the idea of Central hypo to be considered as a diagnosis.

I have tried to get my ENT surgeon and endo to look at this with my symptoms. They have two patients in the clinic with Central hypo but they say even with a persistently low and below range FT4 and a TSH of between 1-3 (never been above range) they say that Central hypo as a diagnosis doesn't apply to me. I have even shown them copies of current research but it has made no difference.

Hopefully Jonnyseven's endo may be more open with their possible diagnosis?

[greygoose in reply to Hedgeree]

So, why do they say a diagnosis of central hypo doesn't apply to you? What is their logic? Because it doesn't sound logical to me!

Yes, I know it's difficult, but if you don't try you'll never win. I think Jonnyseven should at least mention the idea.

[Hedgeree in reply to greygoose]

They say my TSH is too high despite me showing them research that shows it doesn't have to be particularly low in the range.

I agree it doesn't sound logical but I have another endo appointment soon so will try again. Though I'm suspecting that I may end up being discharged from the clinic, post surgery and back to the 'care' of the gp with half a thyroid and a below range FT4 ('my normal') 😐

[greygoose in reply to Hedgeree]

Sounds like deliberate non-cooperation, to me. They just don't want to give you a diagnosis.

[Hedgeree in reply to greygoose]

I'm starting to wonder?

[Jonnyseven]

Hi Greygoose, just wanted to clarify, you say my TSH was low but it's actually high and over range in both tests, 4.96 on my most recent and 4.76 on the previous test, the range being (0.27-4.2). Although on some older tests from a couple of years ago my TSH was within the "normal" range, albeit a higher normal.

[greygoose in reply to Jonnyseven]

It's low compared to the levels of your Frees. With an under-range FT4 like yours, the TSH should be much, much higher than that.

You can't just take one number and look at that and come to any conclusions. You have to look at the three of them together to see what's going on.