proving hypothyroidism

[Kitkat1982]

is this enough to prove hypothyroidism to nhs like a GP? My t4 was 16.9 with no treatment a few years ago but I was still having hypothyroid symptoms so started on NDT. It’s got worse in last year and a half and this are my recent results whilst on 160 of NDT- if I wasn’t on it, my t4 would be too low but I don’t want to have to lower it to prove it. I did up to 320mg of NDT to try and raise t4 but then ended op with t4 at 13.4 but t3 was 7. T4 is supposed to be mid range isn’t it to feel optimal?

[Charlie-Farley]

I’m not versed in NDT hopefully one of the other forum members will be able to answer your question.

I really need to ask you a question though, how are you actually feeling at the moment, which symptoms are you experiencing, are there any that have been alleviated, because without that information it’s difficult to discuss.

Is your doctor just treating the blood tests?

Do you have any other health issues that could complicate the situation?

I think ultimately there are so many variables that we have to put symptoms first in terms of management.

I am on monotherapy and my doctor wanted to leave me on 75 µg of levothyroxine because I was in ‘the range’ and NORMAL’..

I was also severely symptomatic.

Turns out I was also in range on 100 µg, 125 µg and 150 µg where I finally reached therapeutic dose. We have to use blood tests and ‘Ranges’ with caution. It doesn’t tell the whole story. Sadly doctors think that blood tests replace having to think about symptoms, we need to remind them that it doesn’t.

[Kitkat1982 in reply to Charlie-Farley]

Thanks. My hair loss has been alleviated and is still that way but I’ve put all the weight back on from when I first started taking NDT and was optional. I’m sometimes getting a hoarse voice, got the anxiety and depression, and massive digestive issues at the moment with diarrhea. I’ve got a lot going on health wise because I have pots and everything that goes with that- low blood pressure, fast heart rate. I also have mcas and hsd (Eds). I’ve having issues with hypoglycemia, my cortisol is borderline low and I’m wondering about hypopituitarism as a potential cause of the hypoglycemia. My doctors are useless so I’m doing my own doctoring as usual- it was me who found the 3 conditions I already have, I’d be completely disabled and stuck in bed still if it wasn’t for my own doctoring.

[Charlie-Farley in reply to Kitkat1982]

totally agree-I was ready to check out before finding this forum. These guys saved me.

[Charlie-Farley]

I just had a look at your bio - I would urge you to fill it in as it really helps others to give informed lived experience advice- Have a look at mine click on my face and you’ll see my bio though sat in my profile. I’ve also made some posts on self advocating and some of the myths around using things like TSH .

[greygoose]

Thyroid hormone levels are supposed to be where they make you feel well. If you don't feel well then something isn't right. But, there's no specific number in a range that they should be. Some people would be fine with your FT4 level, others would need it higher. I would need it much, much lower! We're all different, and blood tests are only a rough guide - especially when taking NDT. And, when taking NDT, the FT4 is usually low.

However, if you do think you need a higher FT4, the best way to do it is to take levo with your NDT. That way, you won't raise the FT3 too much.

But, in answer to your question - is this enough to prove hypothyroidism to nhs like a GP? - I would say no. It would be very, very difficult to prove hypo when already on thyroid hormone replacment because doctors don't know enough about the condition to understand what THR does to levels. They would probably look at your results and tell you you didn't need it! I'm afraid their education is sadly lacking.

[Kitkat1982 in reply to greygoose]

Thank you. I don’t feel well, I know something isn’t right. Some of the symptoms have returned like I’ve put on lots of weight again. My t4 always stayed the same when I first started taking NDT. Now it’s gone lower but it also decreases when I reduce the amount of NDT- a few weeks ago my t4 was 13.4 on NDT but because my t3 was too high at 7, I reduced and my t4 has decreased. So I’m wondering whether I’d I keep decreasing NDT it will get to lower than 12 and then maybe I can give them the results? How else to get Levo?

[greygoose in reply to Kitkat1982]

Buy it yourself on-line. Don't you buy your own NDT?

[Kitkat1982 in reply to greygoose]

yes but didn’t realise you can buy Levo online, I thought you needed a prescription. Where from?

[Jodypody]

As grey goose says your T4 reduces and T3 raises when on NDT. Your results look ok. What symptoms remain?

[Kitkat1982 in reply to Jodypody]

Thank you. My weight has returned to how it was before but now I’ve put on even more than before. I’ve got a hoarse voice at times, depression and anxiety which is physiological, digestive issues, issues with bladder. I don’t feel well, I know something isn’t right. I’m getting hypoglycemia and think the cause might be hypopituitarism. Some of the symptoms have returned like I’ve put on lots of weight again. My t4 always stayed the same when I first started taking NDT. Now it’s gone lower but it also decreases when I reduce the amount of NDT- a few weeks ago my t4 was 13.4 on NDT but because my t3 was too high at 7, I reduced and my t4 has decreased. So I’m wondering whether If I keep decreasing NDT it will get to lower than 12 and then not be in range anymore.

[pennyannie]

Hello Kitkat :

NDT contains a fixed ratio of both T3 and T4 and it does not express in the same way in blood test results as synthetic Big Pharma T3 and T4 for which this blood test range and guideline was introduced.

There are no specific blood tests for NDT and generally speaking you simply dose to the relief of symptoms and monitor on blood pressure, pulse and core body temperature, twice daily, as you build up your dose to relieve, as best you can, symptoms of hypothyroidism.

Taking the conventional thyroid blood test when taking NDT would likely show a suppressed/low TSH - a Free T4 likely low in the range BUT with a Free T3 proportionately higher in the range than the T4.

No thyroid hormone replacement works well until your core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

Getting diagnosed hypothyroid can be challenging as not all people have a functioning TSH -that responds in the ' normal ' way - and further investigation is needed as to pituitary function and prevailing thyroid antibodies.

P.S. Just realised I replied to your first post :

[Kitkat1982 in reply to pennyannie]

thanks, you did. I’m trying to prove potential hypopituitarism but everything is only borderline at the moment so hard to but I need to because it’s causing hypoglycemia. My t4 always stayed the same when I first started taking NDT and for the first year and a half, much higher than my t3. Now it’s gone lower but it also decreases when I reduce the amount of NDT- a few weeks ago my t4 was 13.4 on NDT but because my t3 was too high at 7, I reduced and my t4 has decreased. So I’m wondering whether If I keep decreasing NDT it will get to lower than 12.

[pennyannie in reply to Kitkat1982]

Since NDT contains both T3 and T4 -

if you stop taking it, or reduce your dose both your T3 and T4 will show a lower reading :

You can live without T4 but you can't live without T3 and reducing your dose will lower both T3 and T4 .

Yes, if you keep reducing the dose your T4 may well read 12 or less - but it will be at the expense of your T3 and you will be further compromising your health.

[Kitkat1982 in reply to pennyannie]

why does a NDT test tend to show a lower t4? Why does taking NDT cause lower t4 levels but reducing it also cause lower t4 levels? So it’s more important for health and how you feel that t3 is right rather than t4? Why Is only Levo prescribed then? Sorry for all the questions, I’m still learning about thyroid.

If I did it, it would only be for the minimum amount of time and with regular blood tests every few weeks. Or maybe a private endocrinologist can diagnose based on tests I already have.

[pennyannie in reply to Kitkat1982]

So best to track on T3 when taking NDT :

25 years odd years ago all treatment options - T3- Liothyronine and T4 - Levothyroxine and Natural Desiccated Thyroid / DTE - Desiccated Thyroid Extract - were all available from your doctor to treat you with once diagnosed hypothyroid.

T4 - is the easiest to manage and the cheapest option :

Over the past 20 odd years primary care doctors remit has changed and currently they are only allowed to prescribe T4 - Levothyroxine and you need to be assessed by a NHS endocrinologist if you ' qualify ' for more than the cheapest option.

If you can go private, to the right specialist you will likely be considered for any of these recommended treatment options.

[Kitkat1982 in reply to pennyannie]

thanks.

[SlowDragon Administrator]

Low Ft4 is completely normal and to be expected on NDT

Important to test vitamin D, folate, ferritin and B12

[Kitkat1982]

Thank you. I know something isn’t right but I don’t know whether it’s thyroid or different hormone. Some of the symptoms have returned like I’ve put on lots of weight again. My t4 always stayed the same when I first started taking NDT for the first year and a half. Now it’s gone lower but it also decreases when I reduce the amount of NDT- a few weeks ago my t4 was 13.4 on NDT but because my t3 was too high at 7, I reduced and my t4 has decreased. So I’m wondering whether If I keep decreasing NDT it will get to lower than 12. Or is this normal for being on NDT and doesn’t mean low t4?