Just looking for some reassurance that I'm not going to die from this 🥹

[Lucy___]

Just having a bad weekend day whilst I wait to attempt to speak to the GPs and endocrinologists on Monday.

Basically from my other post, I've been on 25mcgs levothyroxine since last September and my TSH has improved (now 1.1, can't fully remember what it was previously but I think around 3) but my T4 and my T3 have dropped.

T4 from 16 to 14

T3 from 3.7 to 3.4 (lowest it's ever been on NHS bloods but it is normally 3.1 on medichecks when it's 3.7 on NHS so it's likely to be into the 2's now on medichecks)

I rung endocrinology 3 times last week and still can't get in touch with anyone, last time was Friday and the woman assured me that the endocrine nurses would call me back that day, they never do).

My GP who doesn't have a single clue about anything just said that the above results are within normal values so to continue with levo 25mcgs, completely failing to understand that my levels have DROPPED since being on 25mcgs of levothyroxine so it's obviously not doing me any good at that level!

I truely hate her.

I've taken it upon myself to up my dose to 37.5 mcgs so an extra half tablet a day simply because I'm frightened because I have heart problems and I don't want to give myself a heart attack by stopping my thyroid function completely by being on the 25mcgs.

Please can I have some reassurances because I can't do anything except lay in bed and cry because I'm so worried about my heart.

It doesn't help that just last week after I took a few days of coq10 enzyme I had quite a bad run of NSVT.

I think I'm more frightened that I'm not getting any help from anyone medical than anything else and the last thing that I was expecting was for my levels to be lower and for me to be feeling worse than ever.

I literally have no room to feel worse than I already am and I'm so frightened that they are all dismissing me and I can't find anyone to help me.

All the private endocrinologists have such long waiting lists too.

[helvella]

Your reduced TSH will be (effectively) asking your thyroid for less thyroid hormone.

And your thyroid might be reducing its output by MORE than the equivalent of the 25 micrograms of levothyroxine you are taking. That could explain reducing FT4 and FT3.

The initial answer would be to increase the levothyroxine dose to compensate, and add a little. Maybe 37.5, maybe 50. But with a GP who does not appreciate this, you have a difficult job getting anywhere.

You seem to appreciate that.

It is very difficult to reassure you about your heart issues. I could say that a large number of the members here have gone through heart issues. But that is using population statistics and applying them to an individual.

And the heart rate can go up or down in hypothyroidism.

[petra_B]

Lab results are figures. When on thyroid medication, it is equally (if not more) important to consider how you feel on the current dosis/with the current lab figures. Do you take selenium? It helps body to convert T4 into T3 (T3 is our "gas pedal"). Was your diagnosis Hypothyroid or Hashimoto? What about vitamin D level?

[Lucy___ in reply to petra_B]

I feel exhausted and so much worse than last summer. I don't really have it in me to do anything at all now. Even getting dressed is a struggle. I don't take selenium but am very nervous with vitamins as most cause me to have heart palpitations.

I haven't really had a diagnosis from anyone. Definitely not hashimotos as my autoimmune marks for it were completely normal.

I haven't had a diagnosis of hypothyroid either because my TSH has always been within normal range.

The endo was just trying something as my T3 and T4 are low but everyone seems utterly bemused that my T3 and T4 are low and they don't know why.

It's like I'm the first person on the planet to have normal TSH but low T3 and T4.

They are completely and utterly baffled by it.

My vitamin D is completely normal now - 132 up from 46 last year

[petra_B in reply to Lucy___]

In your profile you mention covid. I had it once, last August, was knocked out for a week and still have not regained my usual "energy level". In winter, thyroids a bit out of whack make one feel easily quite miserable mentally and physically. Hang on in there. As for Hashi: either the markers are zero or positive, just like you can't be a little pregnant

[greygoose in reply to Lucy___]

It's like I'm the first person on the planet to have normal TSH but low T3 and T4.

They are completely and utterly baffled by it.

So, none of these brilliant doctors have ever heard of Central Hypo, then? Where the problem is the pituitary/hypothalamus rather than the thyroid? I haven't had time to go through all you posts but has no-one on here ever suggested it?

To sum it up quickly Central Hypo = 'normal' TSH and low Frees, because either the pituitary or the hypothalamus is not producing enough TSH to stimulate the thyroid to make enough thyroid hormone, and the thyroid cannot produce thyroid hormone without that stimulus. Sounds like a plausible explanation to me.

[66olives in reply to Lucy___]

Would you consider eating three brasil nuts a day? That's how I supplement selinium.

[J972]

Hi Lucy,

I was just reacquainting myself with your previous posts to see if there’s anything obvious which might have been missed. I see that you’ve previously referred to having low iron, I’m wondering whether you’ve ever followed this up?

Secondly I wanted to ask about your vitamin B12 status. Do you have any blood test results that you can share? Do you supplement with B12?

Finally I’m going to point you in the direction of [ redacted doctor name ], who’s a specialist in both iron deficiency (with or without anemia) and B12 deficiency. His website is certainly worth a look, as are the numerous Google reviews from patients

[ redacted clinic name ]

Hang in there x

[helvella in reply to J972]

The TUK forum guidelines do not allow naming of doctors, nor clinics when doing so more or less identifies the doctor.

Please send the details to Lucy___ by Private Message.

[J972 in reply to helvella]

Sorry, completely forgot

[Agitator23]

I had 'normal' blood results but was very hypothyroid. Mine is central hypothyroidism. It was a nightmare to get that recognised and formally diagnosed - but I got there!

There's a lot of bad science and misunderstanding of hypothyroidism among the medical profession. Lots of help on here. It was invaluable to me. There's more info in my biog about how I got diagnosed. I feel like a different person now I'm on the right dose of Levothyroxine...