What's occurring?

[MMaud]

Hello guys.

I've been on a real journey trying to get to the bottom of my temperature regulation issues, for the last couple of years.

In March, based on a TSH score of 5.8, and an FT4 of 13, I was started on 25mcgr Levothyroxine, which has since been slowly titrated to 62.5mcgr. At the same time, my Vit D had dropped significantly, leading to a short coarse of a loading dose, followed by an ongoing maintenance dose of D3 and K2. My calcium scores have also been a bit on the low side for some time too.

For a time, I wasn't feeling the cold so much, but then we did have the hottest summer in a very long time, to help matters just a bit, but in the last 4-6 weeks, I have been markedly colder again.

Last week, I had my latest bloods done, with a very strong directive from theGP to test both T4 and T3. At last, the lab complied.

My most recent results are below and I have included the assay ranges. I had seen the modest increase in the TSH online, but when I spoke to my GP I hadn't seen the T3 and T4 results so hadn't had the chance to do my research and reading.

Obviously, I still have to do that reading, but I wondered if you clever, experienced folks had any comment on my situation so far.

Serum TSH level0.3 – 52 Results: 3.4; 2.7; 4.4; 5.8; 4.5; 2.8; 1.5; 1.7

(most recent July and Sept)

Free T410 to 25 Results: 11; 12; 13; 12; 13

(most recent April and Sept)

Free T33.5 - 6.5 Result: 3.4

(Only ever tested Sept)

Serum Parathyroid1.95 - 8.49 Result: 7.64

(Only ever tested Sept)

Antibodies were tested in March, with nothing even verging on troublesome present.

I have a further telcon with my GP in three weeks, and in the interim, she has taken an action to ask the Endos for advice on my current situation. Clearly that 3 weeks is my own homework window.

Thanks as ever, I really appreciate you sharing your experiences and providing the ongoing support you do.

[greygoose]

Your FT3 is under-range, so hardly surprising you feel bad. It's low T3 that causes symptoms, not FT4 or TSH. You are very under-medicated. 25 mcg to 62.5 mcg is hardly any increase at all. You should probably be on about 150 mcg by now. Increases should be 25 mcg every six weeks.

[MMaud in reply to greygoose]

Thank you greygoose . I was hoping you might notice my post.

My GP is very candid in her lack of confidence in dealing with hormonal issues, and I respect that candour, but it has meant my titrations have been very cautious.

Using the weight/dosage calculation of 1.5mcgr/kg, I'm not far off (48kg, so I haven't, fortunately, experienced weight gain along the way), but then, applying the 1.6-1.7 mcgr/kg, I am under.

Obviously that's an incredibly blunt tool.

I can't tell you just how excited I was to learn today that the lab had after all, and after 3 or 4 ignored requests actually tested FT3.

Having started on T4 when my FT4 was 13, I found it a bit curious that the FT4 hadn't risen at all (in fact had dropped to 12 on one test, although a variance of 1 is likely clinically insignificant, I would have thought?

Sorry, I'm clearly opening and emptying my brain here!

[greygoose in reply to MMaud]

That's not the way to dose. Going by weight is just a rough estimate to fix a starter dose for someone who has just had a thyroidectomy. The dose is then adjusted to suit the person. It is not meant for someone like you and me who still had thyroids when we started thyroid hormone replacement.

The idea is that you start on 50 mcg (usually), get retested after six weeks, and increase by 25 mcg. And repeat the process until you are well. There's no need to be over-cautious. Becoming over-dosed for a brief period is not going to kill you. If a 25 mcg increase is too much, it will be picked up at the 6 week test and the dose can be slightly reduced, no harm done. Her lack of knowledge is no excuse for grossly under-medicating you. All the necessary knowledge is there, at her finger tips. All she needs is a keyboard and an internet connection. It's too easy to just say oh, I don't know anything about it. She's a doctor, it's her job to learn how to make her patients well. Sorry, but this really makes me mad.

So, how do you take your levo? Do you take it on an empty stomach, with a large glass of water, and leave at least one hour before eating or drinking anything other than water? Do you take any other medication or supplements at the same time as your levo?

[MMaud in reply to greygoose]

Hopefully, today (she's pretty decent at keeping up with tasks she has taken to execute) she has contacted the Endo I saw privately some months ago, for advice on the way forward, so she isn't entirely passive.

I take my Levo the moment my eyes open in the morning, or if I wake in the night, I take it, if it's 4am or later, to maximise, I hope, on the dose. I can't say that 100% of the time there's always an hour between dosing and morning tea, but almost without fail (clearly aside from days when fasting bloods are drawn) there's a 30 -60 minutes period of elapsed time. I don't usually have a large glass of water with it. I hadn't realised that was desirable.

The only other thing I take is some maintenance D3+K2, but I tend to have that with breakfast, so some time after the Levo dose.

I don't take any other meds for any other conditions.

[greygoose in reply to MMaud]

The large glass of water is to make sure the tablet gets down into the stomach, and doesn't get stuck on the way down. The tablet needs the stomach acid to release the hormone from the sodium molecule it's attached to.

You really do need to leave an hour before drinking tea. The caffeine will affect absorption. Vit D3 should be at least 4 hours away from thyroid hormone.

The GP contacting the endo for advice is a problem in itself, because endos rarely know much about thyroid. They are usually diabetes specialists and have little understanding of thyroid. And, asking the endo's advice hasn't done much for you, so far, has it? If she still believes that dosing should be done by weight. Were you impressed by that private endo's handling of your thyroid? If he were that good, you'd be much better, surely.

[MMaud in reply to greygoose]

Hello there - There's much to ponder there, Greygoose.

Firstly, I'm going to switch my Levo from morning to just before bedtime, as that'll ensure quite a gap before any danger of morning tea meddling in the mix. That'll also well and truly separate the D3/K2 too. I'm sort of pondering Magnesium, but would ideally like to do that at bedtime (as it is reputedly good for sleep), but now thinking it might be better to do that in the morning, well away from the Levo.

I actually saw two Endos on my way to where I am now, with the first one dismissing my bone, bone, bone coldness as being "one of those things that sometimes happens". I left that consultation feeling a bit like I wanted to throttle him and scream at him that he wouldn't feel that way if it were his wife in my shoes. The second was at least interested, and did order a massive raft of bloods to be done, which at least excluded a load of scary "stuff", although his hand-off in the end was to Rheumatology who were similarly disinterested. In fact, when I got home from that appointment I commented she was bored, dismissive and I doubted I'd seen anyone less engaged, who still had a pulse. You can tell I was singularly unimpressed, so probably my favouring Endo #2 could be largely that he was at least interested, and on the hand off asked me to write to him when/should I get to the bottom of things, as he'd very much like to know.

It's all so incredibly disappointing, for so many of us.

As you can tell, I'm trying to piece things together, but this is much more complex than my only other condition of diabetes. Of course, many people with diabetes may feel differently, but for me it's the case.

I'm quite heavily involved at my local(ish) NIHR on the diabetes side of things, but when there just the other day, I asked about thyroid and associated issues, but it seems there's less there in this field.

I guess we all just have to learn to look after each other as best we can, and I really do appreciate the work you and others do so tirelessly on this site. It matters.

[greygoose in reply to MMaud]

Switching your levo to bedtime is a good idea, but magnesium needs to be at least four hours away from levo, too. If you're going to take that in the morning, you need to find one that doesn't make you sleepy - there are several different types of magnesium. And, yes, you should be taking it as you're taking vit D3, it's a co-factor.

One of those things that often happens! Typical useless endo remark! Doesn't he know it's one of the prime symptoms of low thyroid? Doesn't he understand that everything has a cause, and the fact that he doesn't know what the cause is, doesn't mean there isn't one. But, he obviously just wasn't interested. There are very few doctors that get passionate about thyroid. I've only ever met one, and I've seen many, many doctors.

Even so, being interested still doesn't mean that he knows much about it. And, he could still believe all the old myths about TSH etc. I think that asking you to write to him 'if you ever get to the bottom of it' is particularly cheeky - I thought it was his job to get to the bottom of it! What do these people think they're paid for?

It's good to look after each other, but first we have to learn to look after ourselves. And that means reading, reading, reading as much as you can - especially on here.