My latest blood results

[Kizzygirl]

I posted in July that my GP had reduced my Levo and wanted to reduce again because I had a suppressed TSH. Converting to T3 seems to be my problem and knowing that I’m unlikely to get T3 prescribed, I have taken supplements to aid conversion. I’ve taken Selenium for a few months as well as Vit B’s and tried to be gluten free.

My Free Thyroxine is now 20.7 (12-22)

T3 4.84 (3.10-6.80)

TSH 0.067 (0.27 - 4.20)

In July my T3 was 3.44 and T4 was 17.5

So my T3 has come up as has my T4. TSH remains suppressed so my GP will no doubt insist on further reduction of dose but I’m avoiding going anywhere near them! I still have some hypo symptoms but bloods are encouraging I think. I thought this might help others thinking of trying to improve conversion.

[greygoose]

Your FT3 has risen because your FT4 has risen. But that doesn't mean that you're converting better, I'm afraid. And it's doubtful that gluten-free will have anything to do with conversion.

Did you get your vit B12 and folate tested before supplementing? How about your vit d and ferritin?

[Kizzygirl in reply to greygoose]

Oh that’s a bit disappointing! I wonder why my T4 has risen? Yes, I did a full Blue Horizon test at the beginning of the year and levels of everything else were pretty good. Still have fatigue and awful constipation which I’ve only had since since my Levo reduction at the beginning of the year. I can’t risk going back to GP because he has already said that I need a further Levo reduction because of suppressed TSH and was completely unprepared to even have a conversation about it. Also have psoriasis flare up and vitiligo since taking lower dose of Levo, GP uninterested in that as well! I guess I can’t really be helped, certainly not in the UK

[greygoose in reply to Kizzygirl]

Nor anywhere else, really. Very, very few GPs know anything about thyroid, anywhere in the world. The only solution is to learn as much as we can and self-treat.

Do you know if you have Hashi's? If you do, that could be why your FT4 has risen. But, your FT3 is still under mid-range, so that's why you feel so tired.

For the constipation, you could try taking vit C in high doses - but start low and work up slowly to gut tolerance. And/or magnesium citrate.

[Kizzygirl in reply to greygoose]

Yes Hashi’s for 18 years. A scan of thyroid gland last year showed that most of the gland had been destroyed by autoimmune disease.

Thanks grey goose

[greygoose in reply to Kizzygirl]

You're welcome.

[MissGrace]

I posted this earlier in reply to someone else, but thought some of it might be relevant to your situation - especially as your conversion is worse than mine. I see an endo privately which I know isn’t an option for everyone. Here was my response to an earlier similar post.

I went to see my endo this week - my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase. What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, so they just treat it in the same way. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically it loses the plot. He also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need more of the synthetic stuff than we would of our own - even more than the normal range for some people to get well. The combination of hashimotos and synthetic T4 creates a perfect storm. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges.

[Kizzygirl in reply to MissGrace]

Thank you for replying to my post, I appreciate it! It’s so difficult to know what is correct information. My GP’s are adamant that I will get osteoporosis and atrial fibrillation by continuing to have a suppressed TSH and simply refuse to engage in any discussion on the matter. They insist that I continue to reduce my dose of Levo despite my symptoms all returning. Last Christmas I had really bad ‘flu and I wonder if that infection has caused the Hashimoto’s to go haywire. I have a very slow pulse, little energy and many other hypo symptoms, so I’m pretty certain that I am not hyper as my GP’s tell me! This last year has been a real struggle and it looks like that’s my future now.

Your explanation really makes sense and I’m sure that autoimmune individuals like me will have major fluctuations over time, possibly in response to infections or just because that is the nature of autoimmune diseases.

I can afford to see an endo privately but realise that I need to pick someone very carefully in case they agree with my GP and advise reducing Levo further in which case I’m in deep trouble in terms of my health.

[MissGrace in reply to Kizzygirl]

If you are going to try the private route, put a post on here asking for recommendations of sympathetic endos in your area who will allow a suppressed TSH and who will give a private prescription for T3, in case you decide to go down that route as a possible solution. I’m sure someone will be able to help. It’s a sad fact that it might be the only chance of getting well is paying for advice, or self-medicating.

[SlowDragon Administrator]

Before seeing any thyroid specialist, especially if going privately ALWAYS get full Thyroid and vitamin testing

As you have Hashimoto's vitamin levels are likely low

What supplements do you take?

Are you on strictly gluten free diet?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get results and ranges

[Kizzygirl]

Thank you for the advice which I have been following for a year thanks to everything I have read on this forum. My vits and minerals are ok on my Medicheck tests and I do supplement. Unfortunately my TSH remains very low and my GP has reduced my Levo on that basis. I can only obtain what I am prescribed and so I continue to be very symptomatic and getting worse on my lower dose. I’m hoping that the right endocrinologist might be more open minded and able to persuade my GP.