New member. Blood result summary. Any advice welcome.

[Florence1992]

Hi there, I'm a 26 year old female from London. I've been researching endocrinology for a few years due to unrelenting symptoms that have all been grouped by my GP as "chronic fatigue", although my blood results suggest otherwise - in my opinion. Here's a breakdown of my results over the past few years:

Spring 2015: TSH 1.93, FT4 10.5 (12-22), FT3 3.0 (3.1-6.8), Ferritin 28 (25-180)

Winter 2015: TSH 2.9, FT4 11 (12-22), FT3 3.1 (3.1-6.8), Ferritin 24 (25-180)

Summer 2016: TSH 2.7, FT4 12 (12-22), FT3 3.0 (3.1-6.8), Ferritin 27 (25-180)

Winter 2017: TSH 3.06, FT4 12.9 (12-22), ** FT3 5.0 (3.1-6.8)** Looks like an error?, Ferritin 28 (25-180)

I also have elevated cholesterol, borderline-high ALT, bradycardia, and awful hypo symptoms from constant fatigue to headaches, dry skin, thinning hair and weight gain.

Last year I ended up trying levothyroxine at 25mcgs on my own, but it ended horribly with what seemed like an adrenal crash after a month or so. Iron supplementation also makes no difference. My GP is no longer an option - he said free thyroid hormone tests are bogus.

For reference, I've been having hypo symptoms since I was around 15 (fatigue, constipation, insomnia, bradycardia). At that time, I had a heart ultrasound which showed some enlargement, but it wasn't investigated further. Plus, I was still functional and not too sick-feeling back then, so it was seen as a harmless anomaly.

[ShinyB]

Hi and welcome, I'm on a big learning curve myself but your results indicate hypothyroidism to me. Did you also get checked things like B12, Vit D, folate, as these are all important to thyroid metabolism? Your story sounds similar to mine, with a similar age onset, and I too have problems with my adrenals. I'm still working out the pieces of the puzzle, which I'm not finding easy to do with such brain fog!

You might also want to consider getting your thyroid antibodies tested (you may have to pay privately if your GP won't help). A lot of people with hypo symptoms have what is called Hashimotos (apparently 90% of cases of hypothyroidism) where antibodies attack the thyroid.

Some more knowledgeable people will reply too!

Best of luck to you

[Florence1992 in reply to ShinyB]

Hello ShinyB, thank you for replying to my post. Yes, my Vit D is normal, in the mid-high range (I supplement) and my B12 and folate are ever so slightly elevated - but I was also supplementing those as part of a multi, so I imagine they're not likely raised due to infection etc.

Yes, I might test my antibodies again just to double check, although they were actually tested once. Both normal (low-zero) ... but that was probably 7-8 years ago now. Also had a thyroid ultrasound with no abnormalities detected. No goiter either. So I'll bet it's not Hashis given my normal TSH, but worth checking either way.

Sorry to hear about your own struggles, I do hope you find a solution to them soon! And good luck to you too.

[ShinyB in reply to Florence1992]

Thanks It's the biggest, most complex jigsaw puzzle I've ever started, that's for sure! Good luck

[Marz]

Anti-bodies - TPO & Tg - have they been tested to rule out Hashimotos ? .....

[Florence1992 in reply to Marz]

Hey Marz, thanks for replying. They were tested about 7-8 years ago and both negative, but that was SO long ago. So I'm thinking of testing again soon to double check. I'm doubtful it's Hashis, but good to be sure isn't it!

[Marz in reply to Florence1992]

Always good to rule things out - then the hill to climb will not be as steep

I have read that loads of VitC is good for adrenals - as are thyroid hormones of course !

[shaws]

Welcome to our forum,

We cannot take a GPs word for anything with regard to thyroid hormones. The glaring fact is that your FT4 in all tests is below range - so how can you convert it into FT3 as T3 is the only Active Thyroid Hormone required in all of our millions of receptor cells.

I note no-one has tested your thyroid antibodies, so I'd suggest you ask for these too. If you do have antibodies you should be prescribed levothyroxine. 50mcg is a starting dose and 25mcg might have been a bit too low for you to start as it can rebound somewhat if dose is too low. 50mcg is a start with 25mcg increments every six weeks until TSH is 1 or lower.

In other countries people are diagnosed if TSH reaches 3. In UK it is 10 - so why do they let people linger with clinical symptoms. Why does a doctor talk rubbish when referring to FT4 and FT3. I shall give you a link and read why these are important.

The following is a list of symptoms and I am sure you will tick off more than a few:

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

Blood tests should always be at the very earliest, fasting (you can drink water) and if on thyroid hormone replacements (usually levothyroxine) you'd allow a gap of 24 hours between last dose and test and take afterwards. This helps keep the TSH at its highest as that's all they look at - it appears to me and many on the forum.

[Florence1992 in reply to shaws]

Hello Shaws, thanks for your reply and for such a comprehensive response. Yes, I've really been given the run around these past few years! And thank you for those links, I'll have a read now.

Yes, I'll re-test my antibodies soon, given that the last time was almost a decade ago – definitely worth making sure nothing's changed since then!

I'm fearful of starting on 50mcgs on my own only because of how I reacted to the 25mcgs. It seemed to unmask or exacerbate what seemed like adrenal issues. I could barely get up in the morning, had terrible anxiety, palpitations after meals, loss of appetite, weight loss and very low blood pressure, all within about 3 weeks of starting Levo. Really don't want to trigger another crash/crisis unsupervised! Hopefully I'll find a practitioner who can tackle all of these issues together soon.

Thank you again!

[shaws in reply to Florence1992]

I hope you find someone who understands adrenal fatigue etc etc.

I know one doctor who treats adrenal issues first although he himself has been ill for sometime.

The other said that adrenal issues will resolve when we get to an optimum dose of hormones.

Diogenes is an expert/researcher along with his team.

healthunlocked.com/thyroidu...

[shaws]

Many members source their own thyroid hormones and have repeated the benefits.

[diogenes Remembering]

Over a long period it seems as if your thyroid has been struggling and though TSH didn't rise above normal it nevertheless has stayed in the region where only 10% or less of socalled healthy people have such a TSH. Indeed in Winter 2017, you would be in the 3% group. As regards your FT4 and FT3 values and your GP's condemnation of them, I'm afraid he hasn't a clue and where he gets that idea from I cannot imagine. Your body health is controlled by both FT4 and FT3 (T4 being converted into the active hormone T3 as needed} and certainly not by TSH. You have many hypo symptoms of which high cholesterol is a very strong sign. Re your experiment with 25 ug T4. Very small doses like that can actually worsen your symptoms and perhaps 50 as a starter would have been better. Fluctuations in your FT4 and FT3 may indicate ebbs and surges in thyroid output as the gland tries to maintain its integrity, in a failing background. We have to realise that the onset of hypo symptoms does not accompany a general set of measurements inside or outside ranges. Everyone is an individual and for some, hypo indications can emerge much sooner and at lower TSH levels than others. It's the shoehorn categorisation of "in or out of range" that is the bugbear of presentday diagnosis - the individual's unique responses are overlooked and ignored.

[Florence1992 in reply to diogenes]

Hi Diogenes,

Thank you for such a thoughtful and detailed response to my post. I wish someone with your perspective was actually treating me in real life!

I'm so eager to try thyroxine again, I'm just terrified of precipitating an adrenal crisis without supervision, which is what appeared to be happening when I started on 25mcgs. I'm actually considering taking levothyroxine concurrently with hydrocortisone but that would take a lot more research and testing, and isn't really a path I'm too keen to explore solo.

But hey, desperation may sway things that way eventually!

Thanks again.

[greygoose]

In your research, have you not come across Central Hypothyroidism? That is where the problem lies with the pituitary or the hypothalamus, rather than the thyroid itself, meaning that the TSH never rises enough to stimulate the thyroid to make enough hormone. With your low Frees, your TSH should be much higher than that.

Central Hypothyroidism is divided into two catagories. When the problem is with the pituitary, it is called Secondary Hypothyroidism. And when the problem is with the hypothalamus, it is called Tertiary Hypothyroidism. (When the problem is with the thyroid itself, it is called Primary Hypothyroidism, of course.) There are tests and scans that can be done to find out if either of these are your problem. But, it's not surprising that your GP knows nothing about all this - they barely know what the thyroid is! - so you would have to see an endo for the tests. That is, if you can convince him that this is the probably cause, of course. They tend to think that Central hypo is very rare, and therefore refuse to test for it. Well, anything can be rare if you never test for it! lol You will have to be extra persuasive!

[Florence1992 in reply to greygoose]

Hi GreyGoose, thanks for responding to my post.

Yes, I have come across both secondary and tertiary hypothyroidism. But my journey from experiencing general symptoms to identifying their particular cause (secondary/tertiary) has been such a long and complex one that I worried I might be missing something crucial/disconnected that could also explain my symptoms and free thyroid hormone values. So I wanted to take a step back and see what people made of my results without bias.

And yes, if I can persuade my well-meaning but ignorant GP to start a full investigation into central hypothyroidism you'll be the first to hear about it, ha!

Suppose I fail to persuade anyone - it's a big question, but what would you do if you were me? Would you try combining levo and hydrocortisone as I mentioned in my reply to Diogenes?

[greygoose in reply to Florence1992]

I wouldn't recommend anyone to self-treat with hydrocortisone. It should only be taken as a last result, in my opinion. Do you have any cortisol results? Support your adrenals, by all means, with vit C, B vits, high protein diet, and salt, but HC is a lot more serious than mere support.

If it were me, I'd try self-treating on levo - but starting at 50, not 25. If that didn't help, I'd add in T3. If that didn't help, I'd try NDT. And, if all else failed, I'd try T3 only. Which is exactly the path I have followed, mainly on my own, because doctors would never prescribe enough hormone to make me well, even though I had not trouble getting diagnosed.

[Florence1992 in reply to greygoose]

Thanks again for responding, Greygoose.

Yes, I agree it's a risky and troublesome route to take. But I'm not sure of many other viable options if I am in fact one of these kinds of people:

ncbi.nlm.nih.gov/pmc/articl...

endocrine-abstracts.org/ea/...

ncbi.nlm.nih.gov/pmc/articl...

My cortisol is low during the day (morning, noon, mid-afternoon) and slightly high at bedtime. I've tried high-dose vitamin C, B vitamins, and adrenal extracts - although these seem to act like stimulants and only make me crash harder after a few days. Given that my free thyroid hormones are so low I would have assumed that my cortisol ought to be sky-high throughout the day to compensate.

What are your thoughts on using transdermal bioidentical progesterone as a precursor to cortisol instead of hydrocortisone?

[greygoose in reply to Florence1992]

Well, I've never tried that, but it sounds worth a try. Better than HC, I would have thought.

'Given that my free thyroid hormones are so low I would have assumed that my cortisol ought to be sky-high throughout the day to compensate.'

Maybe it was, but now your adrenals are incapable of making enough cortisol in the morning, which is why it's high the rest of the day - they are struggling to make enough morning cortisol and only manage to make their daily quota when it's time to go to bed. Maybe if you raised your thyroid hormone levels, it would take the strain off them long-enough to recover.

Anyway, exactly how low is your cortisol? Below range? Bottom of the range? Just below mid-range?

[lizp]

Have been taking levothyroxine for over forty years - dosage going up and up without feeling any better. Eventually attended one of Dr. Peatfield's clinics - started liothyronine (private prescription from Mexico!) and was able to reduce levo drastically. All going swimmingly until pharmacy couldn't send Cytomel because factory had stopped making. Now trying porcine thyroid pills sourced in Uk but too early to say if successful or not. Trying to get doctors to understand that levo is not enough is like beating your head against umpteen brick walls. Have given up.

[Florence1992 in reply to lizp]

Hi there Lizp. Thank you for responding.

Gosh! What a struggle you've had! Yes, that's the other minefield waiting for me on the other side of diagnosis isn't it. 'Will my body thrive most on T4? T4/T3? T3 at incremented doses?' I don't even want to think about that battle yet...!