Thyroid UK
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Why am I still feeling so unwell? (requesting feedback on latest labs please)

Hello all,

I just got my latest lab results back and I am trying to figure out why I am still unwell (with severe fatigue, and apathy/depression as my main - and most troubling - symptoms). It's hard to describe but I also just feel very "out of sorts" and not like myself at all. I have a history of depression and it seems that right now, my depression is very treatment-resistant (having failed 4 different kinds of medications in the last 5 months). I definitely do not have primary hypothyroidism; my doctor still suspects I have secondary hypothyroidism. I have been on 50 mcg of levothyroxine (Synthroid) daily since Dec. 6th. (Admittedly, I've been a bit inconsistent and often miss a dose or two each week).

Latest labs (December 28, 2017; "normal" ranges are in brackets):

TSH - not taken (guess my doctor forgot; but since I don't have primary hypothyroidism, this probably isn't a problem; my last TSH value was 0.97 (range: 0.35 - 5.00) )

Free T3: 3.6 (3.1 - 6.2) *when diagnosed in November: 3.0 (3.4-5.9)

Free T4: 13 (9 - 19) *when diagnosed: 10 (12-22)

Anti-TPO: <10 (<35)

Anti-TG: <10 (<40)

Follitropin (FSH): 3.9; normal for follicular (3.0-8.0)/mid-cycle(3.0-22.0)/luteal(1.5-5.5)

Estradiol-17 Beta: 216; normal for follicular (77-921)/mid-cycle(139-2382)/luteal(77-1145) *when diagnosed, estradiol was <60 (low)!

Cortisol-random: 279 nmol/L (No range given but doctor says it's "okay"; other labs' ranges are around 138-690, so 279 does seem to be "normal")

Since I'm still feeling horrible, I talked to my doctor last Monday about substituting some of my levothyroxine for liothyronine (as one of you kind folks suggested) but she said she didn't want to do that and wanted to leave it to the endocrinologist to decide. I will see the endocrinologist (my first time ever seeing one) on February 13th. Meanwhile, my life's falling apart (haven't been able to study/work since last August; even daily tasks - like doing the dishes - take mammoth amounts of effort).

Feels like a long wait, after months of this already :(

Some things are very clear about my results:

- I do not have primary hypothyroidism (last TSH was low-normal; not high)

- T3 has "normalized" but only by 0.6; seems like a small gain

But what is not clear and what I'd really appreciate advice on are as follows:

- Why do I still feel terrible even when my T3 & T4 are now within range? Could my symptoms be due to something other than hypothyroidism?

- Why has my depression become treatment-resistant (does that have anything to do with the hypothyroidism)?

- Is it possible I'm under-medicated?

- How will the endocrinologist determine whether my hypothyroidism is secondary (pituitary-related) or tertiary (hypothalamus-related)?

- Is the treatment for central (non-primary) hypothyroidism exactly the same as for primary?

- Will I ever have energy, and not feel so hopeless and apathetic, again? :(

I can't say I'm very pleased with my doctor lately. She seemed to take my concerns seriously the first time I saw her about this, but now that my levels have "normalized" and my other pituitary hormones are "alright", she seems dismissive of my ongoing fatigue...suggesting it's "just" depression and to try a psychiatrist/lightbox/light exercise (tried all of those in the past, many times, to no avail). If only I even had the energy to exercise and could do so without every muscle aching and needing a 3-hour nap afterward...I miss being able to walk easily, and to hike :(

Sorry for the long post/many questions! Thank you so much in advance. I have to say, the Thyroid UK community is wonderful!

5 Replies
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Lostwoman,

Being in range doesn't mean you are adequately dosed. It's where in range your results are which counts and yours are low in range which is not surprising when you're only taking 5/7 of the weekly dose you are prescribed if you are skipping a couple of doses each week. Set an alarm or task on your phone to remind you take Levothyroxine every day. It doesn't matter what time of day as long as you take it an hour before food and drink or two hours after and 2 hours away from most other meds and supplements.

Treating hypothyroidism is not a quick fix. You will be optimally dosed when FT4 is in the upper quadrant (16-19 in your current range) and FT3 is over halfway through range (4.65-6.2). Even then symptoms may lag by several months. Undertreated hypothyroidism will certainly exacerbate depression so you may need referral to a psychiatrist (if a timely referral can be made) to help you if antidepressants and other therapies haven't helped.

Treatment for primary or secondary/tertiary (central hypothyroidism) is Levothyroxine. Most GPs can't prescribe Liothyronine without an endo recommendation and it is increasingly difficult for new patients to be prescribed it. Your endo will probably want to see you optimally dosed on Levothyroxine before considering Liothyronine if s/he even supports prescribing Liothyronine which not all endos do.

TRH stimulation test is used to confirm central hypothyroidism. google.co.uk/search?q=trh+s...

Hypothyroid patients often have low vitamins and minerals which can cause fatigue, muskuloskeletal pain and low mood as well as hypothyroidism. Ask your GP to check ferritin, vitamin D, B12 and folate and post the results and ranges in a new question for advice.

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Your FT3 and FT4 should be above half way ,on that basis you seem to be undermedicated but perhaps first you need to check ferritin,folate,B12 and D3 .They need to be optimal to get the best out of levothyroxine.

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Your results suggest you are under medicated

However you absolutely MUST take same dose everyday

Get yourself a weekly pill box and keep it by the bed

Either take on waking or at bedtime

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

Most patients feel better when TSH is between 0.2-1.0 and FT4 towards top of range and FT3 at least half way in range

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I have secondary hypothyroidism, and unfortunately every Endo I’ve ever seen in the last 14 years will only treat with Levothyroxine. Although some will work at treating you symptomatically, but they have never been interested at all in prescribing T3 meds. I completely understand how you feel and feel really unwell myself. However the advice that others have given you is quite correct in that if you have any other underlying deficiencies, this will definitely affect your conversion of Levo. At present my ferritin is 23 (higher than it was) I’m barely converting anything at present. Sad to say but I think it’s a case of trying to help yourself with insisting on getting your vitamin & Iron levels etc tested, and supplementing carefully. For myself I’m going to persist with increasing the ferritin and then review what my conversion situation is when I hit much higher numbers. Depending on that, if it’s still poor then I’m going to take the plunge and go it alone. This forum is so good for advice, I’d of been completely lost without it! So I’m sure that you’ll get some really excellent guidance with your issues. Good luck, I really hope you’re able to get some proper help from your Endo appointment and start to feel much better soon.

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It sounds as though you are still undermedicated, and you should definitely get your B12, ferritin, folate and VitD levels tested. You will feel awful if these are very low.

Are you vegetarian or vegan? We get B12 from protein, usually meat, fish, eggs.

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