Symptoms worse due to cold weather, homozygous for DIO2 gene, on best dose for me? Better when slightly increased T3 but T3 was top of range

[Highland49]

I'm sure that a lot of you are the same, symptoms are worse in winter. My consultant advised not to increase T3. (on 75mcg levothyroxine and 10mcg T3). But in meantime, I had increased only slightly by about 2mcg. (Consultant was on leave so couldn't advise). Fatigue was less debilitating with slight increase, didn't feel so cold, sleeping better and didn't need to inject B12 every day, could go back to alternate days.

Blood tests in Dec 18 -

TSH 0.067

FT4 21.3 (12-22)

FT3 6.3 (3.10-6.60)

Vitamin D 74 nmol/L (50-200)

Consultant advised, as I'm top of range for T3, not to increase and thought my increase in symptoms were due to something else. Have been taking vitamin D regularly as legs have been more achy and continued as usual with alternate day B12 injections but since January, need more frequent injections to keep my balance problem under control. (More information in my profile).

I'm back to see consultant next month but in the meantime, I am back to struggling more with daily activities. I tested homozygous for the DIO2 gene recently. With that knowledge (consultant aware of that), would I perhaps feel better on T3 only, or at least reduce my levo and increase the T3?

I liken levo to taking the brakes off and T3 putting me into first gear. The brakes are not quite back on but I feel nearly as bad as when I was on levo only. The breathing remains 80% better for the suffocation feeling so that is brilliant but I just need to get back to working more hours and coping with recent events. Three family members are ill, plus I'm trying to promote a new business and support my husband's new business. Income is a fraction of what we used to bring home so I'm trying not to think of that. But we are moving house hopefully soon to give the businesses a chance to succeed so juggling all that too.

Help!

[greygoose]

Lots of people need an increase in the winter. And your endo is an old fusspot! Being slightly over-range with T3 is not a catastrophe, you're not going to drop down dead on the spot the instant your FT3 hits 6.7, for goodness sakes! Ranges are man-made and arbitary, at best. Your endo obviously doesn't know how they are arrived at. There was a good post about that a while ago, but I can't find it anymore. But, the point of it was, that the ranges are just averages of the population, so there will be lots of people walking around with an FT3 of over 6.6 without any apparent problem. And, you have to remember, a blood test is just that: it measures what's in your blood. We can't measure what gets into the cells, and it only does anything once it gets into the cells. It does nothing in the blood. So, if it means you feel better with a slight increase, I'd go for it. It's your body, your health, your life.

And, for the record, I would imagine my FT3 is way over-range, and has been for a long time - I don't do blood tests, I self-treat by the way I feel. And, I increased my dose slightly at the beginning of the cold weather, because I really felt the need. I'm still alive.

[Highland49 in reply to greygoose]

Hi greygoose,

Thanks so much for your reply. That really puts things into perspective. The endo is good in that he considers the importance of B12, vitamin D and conversion and I feel very lucky to have been prescribed T3 but his profile stating that he treats symptoms, not blood results, only goes so far.

I do feel now that I want to go it alone. I think I'll have a chat with a sensible GP from my surgery and see if they're happy to prescribe T3 via one of the German Pharmacies. Once I secure repeat prescriptions without the need to see the endo, that will put my mind at rest. I then can be independent of them all as hopefully I'll get 6 months supply every 3 months and then can take extra. (Thybon Henning are in 100s with 20mcg each tablet).

But in the meantime, I see my endo next month so will need to do repeat bloods soon. If I continue with my increased dose, I guess even a small increase will show in my blood. But maybe as I need the extra, it won't? He wants me to have the blood taken 4 hours after I've taken my medication, which we know is not advisable. Most of my other blood tests have been fasting and before my medication. I now won't be able to compare the results, which as you say doesn't show how much is reaching the cells.

In your experience, do you think I would be better on T3 alone? But then I have seen others on here, including SeasideSusie that still need thyroxine so even though I don't easily convert thyroxine, I might still need it to feel well. If only it was straightforward under active thyroid!

I hope you're as well as you can be greygoose. Thanks again for your reply 😊

[greygoose in reply to Highland49]

The only way you'll know if you'll be better on T3 only is to try it. It's all trial and error. And that's one of the things wrong with being under any sort of doctor - most of them are not too keen on letting you find your own way. They like to be in charge. But, if you do get your Thybon Henning prescription, you'll be able to experiment like that. So, I'll keep my fingers crossed for you!

I don't know if your little increase will show in the blood - does he even look at the FT3? Him wanting you to do your blood draw four hours after taking your T3 is rather worrying. Does he really know what it's all about? Didn't you ask him why he wanted you to do it that way? Without a reasoned explanation, that would have set me running as far away from him as I possibly could!

[Highland49 in reply to greygoose]

I'm hoping it won't make too much difference doing bloods after medication. I avoided doing it last time, saying I wanted a direct comparison with my last results but he insisted this time round. I don't like having to be beholden to these specialists, especially when some of their knowledge and ideas are questionable. Will be interesting to know his explanation. At least I've been able to self treat my b12 deficiency, so something has been easier.

He's good in that he does check FT3 and he did act quickly when he realised I wasn't converting well. It's just so drawn out and costly, going back for consultations and private prescriptions. I wanted him to increase my T3 back in December but he wouldn't budge then because of my FT3 level.

Thanks for your good luck wishes!

[Hay2016 in reply to Highland49]

He doesn’t know whether you’ve taken your tabs that day or not!! He’s prob going to use it as an excuse to drop your t3! I’m very cynical at the moment. My endo has never said anything about timing. I’ve been told to stop t3, up levo 25 and test in 8wks. 😂😂 yeah no!!

[greygoose in reply to Hay2016]

He doesn’t know whether you’ve taken your tabs that day or not!!

If he knows anything about blood tests, he would know, because the FT3 would be way over-range! But, you're probably right, he probably is angling to reduce T3. These endos play some sneaky games!

[Highland49 in reply to greygoose]

Don't they just!

[Highland49 in reply to Hay2016]

Oh no sorry to hear you've been given the run around. I'm so hoping my GP surgery will be happy to write the prescriptions from now on then I can still use the German pharmacy, which will cost the NHS absolutely nothing. I just want more T3 to be able to increase and reduce at will and to be in control.

[greygoose in reply to Highland49]

You're welcome.

[HughH]

10 mcg of T3 and 75 levo is not a high dose. On this amount to have your free T3 up to 6.3 (3.10-6.60) would indicate that you do not have a conversion problem.

You seem to need a high level of Free T3 to feel well, which in conjunction with your family history of thyroid issues points to a genetic thyroid condition. The condition is known as Impaired Sensitivity to Thyroid Hormone, sometimes called Thyroid Hormone Resistance.

[Highland49 in reply to HughH]

Thanks for your reply HughH it would be useful to look more into my genetics.