Thyroid UK
87,534 members102,245 posts

What's going on?

Hi new to forum!

I have had secondary hypothyroidism since age 17. After lots of bad endocrinologist experiences (not referred to endo when FT4 38 and FT3 1.6, put on thyroxine, then taken off by ends who didn't care how unwell I felt.... it goes on and on!!) and miss diagnosis it has been a working diagnosis that I have a hypothalamic pituitary axis issue suppressing my TSH response.

I have been treated on Levothyroxine since diagnosis (now 39) and currently taking 225mcg per day. Until recently taking 250mcg and have maintained normal range FT3 and FT4 but October 2017 suddenly FT4 shot up to 32 (T3 not done as moved into new area) reduced dose by 25mcg and restested 6 weeks later, FT4 31 and FT3 4.6.

Feel weird, hypo symptoms. Dizzy, bit disconnected, tired, worried about having the energy to get me though the day, cold, weight gain, abdominal discomfort.....

Haven't had any other tests apart from TSH, FT4 and FT3 for years.

Any suggestions..... have had new referral to endo and seem them in 2 weeks

Many thanks

13 Replies
oldestnewest

Your symptoms sound like low B12. Very common if under medicated or poor converter to FT3

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Obviously you MUST have FT4 and FT3 done as TSH is unreliable.

Do you have high thyroid antibodies? This is Hashimoto's also called autoimmune thyroid disease. If not been tested see if you can get antibodies and vitamin testing from GP.

Private tests are available

thyroiduk.org.uk/tuk/testin...

Vitamindtest.org.uk - £28 postal kit

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many. You may be one of them

rcpe.ac.uk/sites/default/fi...

Essential to get vitamins optimal and TSH low. If you have Hashimoto's then gluten or dairy intolerance is likely

You might consider DIO2 gene test. It has helped some of us to get or keep T3 prescription from NHS

thyroiduk.org.uk/tuk/testin...

Also available now from Blue Horizon

1 like
Reply

We really do need the ranges for your results, as they differ from lab to lab, and the results are meaningless without the ranges. However, just looking at it like that, it would appear that you have a conversion problem and Hashi's. Also, possibly, an absorption problem. Impossible to see if you have Central Hypo without seeing your labs from diagnosis. So, we'd need a lot more information before being able to help you find out what's going on. :)

1 like
Reply

Thanks,

Serum free T3 4.6 (3.1 -6.8)

Serum free T4 31 (12.0 - 22.0)

TSH 0.014 (0.27 - 4.2)

Reply

So, those are your latest labs? Well, that doesn't give any clue to your Central hypo, because on 225 mcg levo, one would expect your TSH to be suppressed! Do you have the results from when you were diagnosed?

What does show up there, pretty clearly is that you're a very poor converter. To have to have your FT4 that high just to get your FT3 to below mid-range, is very poor indeed. And, continuing to increase the levo is not the answer - the higher your FT4 goes, the less you convert to T3. What you absolutely need is a reduction in your levo and some T3 added. You're never going to get rid of your symptoms otherwise. Has no endo ever suggested that? I know they're pretty useless, but even so, this is so obvious!

Have you ever had your antibodies tested?

2 likes
Reply

Hi, I was diagnosed over 20 years ago when I was 17. The GP was negligent and never referred me on.

I do not have the ranges but you get the just.

TSH 0.93

FT4 38

FT3 1.04

I was started on Levo and left until I insisted on having a endo ref after miscarriaging a few years later.

TSH whilst getting on a therapeutic dose has never been responsive even when FT4 was below 9. TSH has only ever been 1.15 and now is completely suppressed.

1 consultant felt I'd had thyroiditis and should of never of been left on Levo and the next one felt that I have hypothalamus-pituitary axis issue.

The second consultant helped me have 2 healthy children (titrated my dose to keep me in upper end of range)......the first one wouldnt put my thyroxine up and let me go hypothyroid whilst pregnant (this child has secondary hypothyroidism too also ADD and ?ASD)

It's been a mess and basically I've been offered no additional tests or investigation unless I agree to come off thyroxine completely so they can work out what's going on without Levo on board!!! With 3 children (one with additional needs and a job to hold down I have always felt scared about ungoing this.

We have moved into a new area and I'm due to see a new consultant on the 15th.

My sons peadiatric endo is happy to work with my consultant too. So I want to get us sorted out properly.

Reply

Those are your results when first diagnosed? It looks like your FT4 was extremely high, so not surprising your TSH was low. That doesn't look like Central hypo to me. I certainly wouldn't have recommended anyone take levo with that FT4.

But what you do seem to have is a conversion problem. Which is nothing to do with Central hypo. So, what you need is T3, not levo.

Reply

Yes! I know!!

1st Consultant said nasty thyroiditis with not enough monitoring to know what happened. ( By the time I was referred to him it was 2002, so was left for years thinking that it was a hypothyroidism that was being managed by my GP) However this consultant wanted me off all meds.... even when TSH was 0.91, FT4 13 and FT3 3.7.

I felt so unwell and didn't trust anyone. I put myself back on Levo 100mcg and buried my head.

Reply

I think we're going round in circles, here. I think the best thing you can do is private testing, as SlowDragon suggests above, so as to get all the necessary information in one go. because, to be honest, I don't really understand what you're saying, here. I don't see where Central hypo comes in to it. And, even if it is Central hypo, the only treatment is thyroid hormone replacement. So, we need to know your exact thyroid status. Sorry.

Reply

Thanks for taking the time to post

Reply

You're welcome.

Reply

Thanks,

Serum free T3 4.6 (3.1 -6.8)

Serum free T4 31 (12.0 - 22.0)

TSH 0.014 (0.27 - 4.2)

On 225mcg levethyroxine

Reply

Get antibodies tested plus vitamins. If antibodies high look at gluten. If vitamins low look at improving with supplements

With FT4 that high next test suggest you get RT3 tested. Not available on NHS though

Then find an endo to trial adding T3 once vitamin levels are good

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

Reply

Not much point in doing an expensive rT3 test with an FT4 that high. We pretty much know that it's going to be high, and all you can do, anyway, is reduce the T4 and add in T3. You don't need another test to tell you that. :)

2 likes
Reply

You may also like...