Levo increased - T4 now decreased & T3 below range

[Bramble83]

Hello again everyone! So far you have been a huge help to me as I try and figure out my thyroid, which is completely new to me.

Firstly I have Addisons Disease (primary adrenal insufficiency), with which I am very stable and take 20mg of HC per day.

Following a failed IVF and miscarriage the IVF clinic picked up that my TSH was 3.1 and they wanted it between 1 and 2 (preferably closer to 1) for us to continue to our frozen embryo transfer.

May 2019 results on no medication for thyroid :

TSH 3.1 (0.4-4.6)

FT4 19 (11-26)

They didn’t do FT3

I then started me on 50mg Levo and these were my results 5 weeks later (appreciate that’s a bit soon but the IVF clinic wanted that due to timelines of cycles. They are all Medichecks as I paid to get them done privately, as the GP won’t test FT3. The GP results were very similar, so haven’t bothered listing them as well :

TSH 1.9 (0.27-4.2)

FT4 19.3 (12-22)

FT3 3.91 (3.1-6.8)

Ferritin 65.3 (13-150)

Vitamin D 60.9 (50-175)

Active B12 146 (37.5-188)

Folate 19.8 (>3.89)

Following these results the GP and IVF clinic both agreed that my Levo needed to be increased to 75mg as my TSH was still too high.

I have just received my latest results after 5 weeks on the increased dose of 75mg:

TSH 1.44 (0.27-4.2)

FT4 17.4 (12-22)

FT3 2.9 (3.1-6.8)

Thyroglobulin antibodies <10 (<115)

Thyroid peroxidase antibodies <9 (<34)

Ferritin 83.8 (13-150)

Vitamin D 82.2 (50-175)

Active B12 178 (37.5-188)

Folate 19.8 (>3.89)

I have been working hard on getting my vitamins up and there’s a big improvement in vitamin D and ferritin. I will continue to work to increase these.

I am taking my Levo in the middle of the night (when I wake up to pop to the bathroom), so I’m not taking it near anything else at all.

I have also been taking selenium and zinc to try and improve my conversion.

So in summary, after my increase to 75mg my TSH has come down to 1.44 but so have my FT4 and FT3 and my FT3 is now below range at 2.9

All advice very much appreciated.

[Judithdalston]

Are you comparing like with like eg bloods taken same time of day ( ideally early in morning as TSH highest then), having only had water no food etc? Glad to see ferritin etc improving?

[Bramble83 in reply to Judithdalston]

Yep, all completely like for like- exactly 8.30am and fasting 😀

[jimh111]

It's not well known but the phase of the menstrual cycle has a big effect on TSH, see the bottom graphs in Figure 1 of this paper frontiersin.org/articles/10... . This might explain your fluctuations. It's unfortunate that they tend to test every six weeks as this is the worst time interval from a menstrual cycle viewpoint, potentially jumping from mid-cycle to start of cycle. This is one possible explanation, there may be some other cause.

[Bramble83 in reply to jimh111]

Thanks, I didn’t realise that 😀 although the tests were 5 weeks apart, so actually both fell at about the same time in my cycle.

[jimh111 in reply to Bramble83]

If you look at the bottom left graph you can see there are big differences between days 8, 14 & 21. TSH jumps about, even in males, just more so in menstruating women.

[Judithdalston in reply to jimh111]

That’s a big difference in TSH levels....wonder whether any drs, including endos, know of that possibility? Interesting.

[jimh111 in reply to Judithdalston]

Doubt it.

[Bramble83]

Hoping someone may have some more thoughts on the test results and next steps?

greygoose your replies on my last lot of results were super helpful- would love your opinion on these new results if you don’t mind?

[greygoose in reply to Bramble83]

I'm afraid that I have no idea why your FT4/3 have fallen like that. But, has no-one mentioned the fact that you're a super bad converter? Your FT3 is now below range. How can that be right? I know that it's the T4 that crosses the blood/placenta barrier, but what's the point of getting pregnant if you don't have enough T3 in your system to make you well. Pregnancy is pretty hard on a body.

What did the 'specialists' say about the drop in your Frees?

[Bramble83 in reply to greygoose]

Thanks for replying 😀

No one has commented on my FT3 or my FT4 falling! Just wanted to see my TSH a bit lower (the GP one came out at 1.66 which is the one they look at, not my Medichecks one)

I sent an email to my endocrinologist saying my FT4 was at 50% of the range but FT3 now below range and asking whether my conversion could be due to reduced adrenal function and this was the reply:

‘as for t4 to t3, yes adequacy of adrenal function can help this and increase of hydrocortisone along with increased thyroxine to 100 is a reasonable step to address this. I am happy to advice t3 supplement if this fails to improve the t3 and t4 trends at our planned review’

If we forget about the IVF thing for a minute, if you just look at my latest TSH, FT4 and FT3, what would be your normal recommendation? Would it be to increase to 100 Levo to try and bring everything up further? Or do you think I should be considering T3? Or both?

Thanks as ever for your help 😀

[greygoose in reply to Bramble83]

My normal recommendation would be to increase the levo a little, but it's doubtful if that would improve conversion. And, if the FT4 gets too high, it would make conversion worse, not better. But you do have room for at least one 25 mcg increase. And, then, add in some T3. But I say that not knowing much about Addison's and it's effect on conversion. So, you should try it their way first, and hope they keep their promise about T3.

I presume, as you are trying to get pregnant, your nutrients have been checked and double checked to make sure they are all optimal?

[Bramble83 in reply to greygoose]

Okay thanks, I will go with the increase to 100mg if Levo and see what happens to my FT3- i’m just hoping it won’t go any lower, like it has done with the increase from 50 to 75.

At 50% through the range for FT4, is there a danger that putting my Levo up by 25mcg would put me over range? With a TSH of 1.44 I presumed a little lower would be better?

I see my endo in about 3 weeks and he’s a really good guy and i’m encouraged by his initial response when i’ve mentioned the T3. I am 100% fine on doing it myself if he won’t agree, but I generally find with addisons, they are very happy to do anything to try and help you and always offer to increase / try any meds you want. Although there’s a first time for everything and I don’t know whether my CCG will prescribe it! Is there a list to look at to find out whether your local CCG will or won’t?

He has also suggested I increase my hydrocortisone, as apparently when the thyroid function picks up (with the addition of Levo) it puts a bigger demand on cortisol, so he thinks I am likely using up my HC too quickly.

They haven’t checked any nutrients! I got the vitamins checked that you recommended on here to me and am really pleased with the increase in my vitamin D and ferritin.

What nutrients would you recommend?

Thanks for all your help, I know people are always reluctant to comment due to the mention of Addisons; I totally understand all the decisions are mine to take and it’s just personal advice from personal experience 😀

[greygoose in reply to Bramble83]

Your FT3 shouldn't go any lower, it should rise. But, as you seem to be reacting abnormally, it's difficult to predict. Same goes for FT4, it shouldn't go over-range, but even if it does, it's not dangerous. T3 is the main active hormone.

I would have thought it was the other way around, that as your thyroid levels increase, it takes the strain off your adrenals. They are the glands that take up the strain as the thyroid fails, so, I'm not quite sure what he's talking about there. But, checking your cortisol levels should tell you if you need to increase it or not.

What nutrients would I recommend checking? Well, vit B12 and folate, selenium as you are a bad converter. Zinc and copper. No point in testing magnesium because there will always be enough in the blood, and you can't test what's in the cells. Most people just take magnesium when taking vit D - along with vit K2-MK7. You could try taking some vit C, that's always a good thing to take.

[Bramble83 in reply to greygoose]

It’s interesting, I would have thought exactly the same thing but interestingly I put a post on the Addisons Facebook support group and Adrenal Diseases group and it was unanimous, apparently when you have no adrenal function, it is common place that increasing thyroid function, means you use your HC quicker and require an increased dose. Who knew! 😳 i’m learning a lot at the moment!!!

The explanation is that your thyroid needs your adrenals to be working to be able to work properly itself. In Addisons you can’t put strain on the adrenals, as they just don’t work, so the replacement cortisol you take, becomes the limiting factor.

In a ‘normal’ person reduced thyroid function would put strain on the adrenals but with an Addisons patient, it doesn’t make any difference, as regardless of the requirement the adrenals can’t respond. So again, the HC replacement dose becomes the limiting factor as to how much the thyroid can do.

Apparently thats why adrenals should always be checked before starting Levo if adrenal insufficiency is suspected, as it can precipitate an adrenal crisis, if thyroid meds are started without addressing the adrenal insufficiency first. i.e Levo ramps up the thyroid but the adrenals can’t respond accordingly on AI patients, so unless they’re on replacement already, it can cause an adrenal crisis.

Thanks for the vitamin advice.

Ferritin 83.8 (13-150)

Vitamin D 82.2 (50-175)

Active B12 178 (37.5-188)

Folate 19.8 (>3.89)

Were done at the same time as my latest thyroid ones and i’ve managed to get my vitamin D and ferritin up quite a bit through supplements, thanks to your previous post and advice with my previous results.

I’ll look into getting selenium, zinc and copper checked with my next thyroid ones 😀

[greygoose in reply to Bramble83]

I've yet to meet a doctor - barring one - who would know adrenal insufficiency if it got up and bit him. Or her. Most of them just look blank when you mention adrenals. That's why it doesn't get tested before starting levo! lol

But, I too have learnt something today, and that does make sense, put like that. And, I would have thought your dose of HC was rather low. How often do you take it a day? I was on much more than that simply for adrenal fatigue.

[Bramble83 in reply to greygoose]

Thankfully my endo is fab my Addisons and so far, seems quite open minded / helpful for my thyroid.

Totally agree with you about most though- they don’t have a clue!

I take 20mg split across the day

10mg @ 6.30am

5mg @ 11.30am

2.5mg @ 4.30pm

2.5mg @ bedtime

20mg is a pretty standard adult dose, with some people going up to 30mg. Very rarely is anyone on more than 30mg, unless stress dosing.

[greygoose in reply to Bramble83]

Really? I didn't know that. Wonder why my doctor prescribed so much more when I didn't even have Addison's.

[Bramble83 in reply to greygoose]

Yeah that’s quite strange. Maybe if it was a short term he wanted to give your whole body a boost?

Did it do the trick? 😀

[greygoose in reply to Bramble83]

Well, it took me about two years to get off it. But, I suppose you could say it did do the trick because I did manage to get off it. I haven't had my cortisol tested for a while because I no-longer see that doctor, and other doctors haven't a clue! But, I don't feel I have low cortisol anymore.

[Bramble83 in reply to greygoose]

Well i’m glad you managed to get off it- certainly don’t want to be stuck on steroids if you don’t need to be!

Thanks again for all your help! Will update when I get the next set of results after the Levo increase 😀

[greygoose in reply to Bramble83]

You're welcome.

[Bramble83 in reply to greygoose]

medscape.com/answers/122393...