Adrenal + query thyroid

[Bramble83]

Hi,

I’ve just stumbled across this forum and this is my first post. Just looking for thoughts / comments on some of my bloodwork.

I am 34 year old female with no other health problems and do a decent amount of exercise to keep fit and healthy (run 5-8km 3 or 4 times a week)

After 2 years of passing out following alcohol / caffeine / exercise and a lot of tests with an endocrinologist I was diagnosed with primary adrenal insufficiency at the start of this year and put on 15mg of hydrocortisone per day.

I hadn’t actually realised how bad I had been feeling with tiredness, inability to think straight etc but now realise I feel about a million times better in myself since taking the hydrocortisone. I still feel quite tired but not enough to stop me doing things. The passing out has also stopped as it turned out it was hypoglycaemia.

I had cortisol testing (low AM result) , synacyten test (low response), ACHT tests (high result), insulin profile (normal) all done to confirm the diagnosis.

We have been trying for a family now for 12 months and nothing is happening so my GP had my thyroid tested again.

Before I started the hydrocortisone my TSH was 1.26 but since taking the hydrocortisone it has jumped up to 2.26. He mentioned something about the possibility of the adrenal insufficiency masking the thyroid and now my adrenal function is being addressed it shows a more accurate representation of my thyroid???

My T4 was 15.3 pmol/L and T3 3.5 pmol/L

Do these numbers all look okay?

[greygoose]

Hi Bramble83, welcome to the forum.

Sorry, we need the ranges before we can comment. The ranges are usually found in brackets, after the result.

[Bramble83 in reply to greygoose]

Ah sorry, I wrongly presumed people would understand the numbers! Sorry!

I’ll have a look for the ranges now 😀

[greygoose in reply to Bramble83]

We do understand the numbers - when they are accompanied by the ranges.

Ranges vary from lab to lab, so we need the ranges from the lab that tested your blood, for the results to make any sense.

[Bramble83 in reply to greygoose]

Sorry, very new to this so had no idea they varied!

[Bramble83 in reply to greygoose]

T4 9 - 24

T3 4- 7.8

TSH 0.4 - 4.0

[greygoose in reply to Bramble83]

FT4 15.3 (9 - 24)

FT3 3.5 (4 - 7.8)

I take it they are Free T4/3?

But, your FT3 is under-range? How could that possibly be alright? It is very bad. Didn't your doctor make any comments on that?

Your FT4 is about right for someone not on thyroid hormone replacement, but your FT3 is catastrophic. Do you have results for the Frees from when your TSH was 1.26?

Has no-one suggested that your adrenal problem might actually be a pituitary problem which is also affecting your thyroid?

[Bramble83 in reply to greygoose]

Yes they are the free measurements.

The T3 and T4 were very similar when my TSH was 1.26

Because I have raised ACTH levels the endocrinologist said that indicated good pituitary function and it’s my adrenals that aren’t responding the the instruction from my pituitary, rather than my pituitary not working.

No, they didn’t seem concerned about my T3 at all!!

[greygoose in reply to Bramble83]

Well, they should be concerned! It's low T3 that causes symptoms, and you have symptoms.

Plus, with an FT3 that low, your TSH should be much, much higher. It's your pituitary that isn't responding to the low FT3. I think you should ask for a second opinion.

[Bramble83 in reply to greygoose]

Thank you!

Is there anything in particular I should be asking for? What test should I be pushing for?

[greygoose in reply to Bramble83]

You should be pushing for a complete investigation of the pituitary. Have a look at these links :

endocrinologyadvisor.com/en...

pituitary.org.uk/informatio...

Even if they reject the pituitary theory, you need treatment because you will never be well with an FT3 that low. T3 is the active hormone needed by every single cell in your body. With an FT3 that low, you are hypo, whatever the TSH says. The problem is that doctors are welded to the TSH level and don't understand much about anything else thyroid-related. Up to you to do your own research to convince them.

[Bramble83 in reply to greygoose]

Thank you, I will have a good read of those.

So could low T3 cause my low resting heart rate (39- 43 bpm), coldness (36-36.3) and hairloss?

[greygoose in reply to Bramble83]

Absolutely. Those are hypo symptoms, and that's what hypo is - low T3. Doctors think that hypo = high TSH. But not always. As they rarely test the FT3, an awful lot of cases of hypo go undiagnosed. The TSH will only be high with a low FT3 if the pituitary is functioning normally. But, if doctors know little about thyroid, they know nothing at all about the pituitary!

[Bramble83 in reply to greygoose]

Thank you!

I will do some reading and try and work out what to ask them to test me for that.

It’s hard when they don’t seem to think my T3 reading is a problem!!

[greygoose in reply to Bramble83]

They do not understand T3. They know nothing about it! They don't understand how important it is. Yes, I know the problem. I have been told by doctors that the FT3 is irrelevant - god forbid - when taking T3 only, TSH suppressed, but FT3 at the bottom of the range! But it's their bad education that causes that. I've always had to stand my ground and insist that I needed an increase in dose despite the TSH!

[Bramble83 in reply to greygoose]

I think getting them to give me anything would be a massive challenge with a TSH of 2.2!!

[greygoose in reply to Bramble83]

Unless you can get them to understand about Central hypo. It is possible that the pituitary is only misfiring on the TSH, and everything else is working fine - I forget what they call that… TSH specific pituitary problems or something. That is a possibility. But, what you have to stress is that it is absolutely NOT normal for the TSH to be at 2.2 with an under-range FT3. That is totally abnormal, and I'm surprised the lab didn't pick up on it.

[Bramble83 in reply to greygoose]

Just found this online whilst searching Addison’s disease and low T3...

Also, the ability of the thyroid hormone T3 to react with the body’s cells is diminished in states of corticosteroid deficiency. In addition, the conversion of T4 to the more active hormone T3 is diminished when corticosteroid levels are low.

Could that be the explanation?

[greygoose in reply to Bramble83]

Part of the explanation, perhaps.

The thyroid hormone would have to get into the cells before it could react. You don't have enough T3 to get in the cells.

Yes, your conversion isn't that good, but the TSH should still be reacting to the low FT3, and it isn't. So, I don't think that's the whole explanation.

[Bramble83]

I should probably also add a couple of other things i’ve noticed...

My resting heart rate is consistently 39-43

I am always cold!!! Even in the middle of summer my temp first thing in the morning is around 36- 36.3

Loads of my hair is falling out and does do intermittently.

Thank you 😀

[SeasideSusie Remembering]

Bramble83

We need the reference ranges for your results to be able to interpret them, they vary from lab to lab.

As you wish to start a family, it's important to know that TSH should be below 2.5 to avoid the risk of miscarriage so it would be a good idea to let your GP know of your plans so that you can keep an eye on your TSH.

[Bramble83 in reply to SeasideSusie]

Thank you! I did ask but he said as it’s less than 4 it’s fine. We have a referral to a fertility specialist this month as have been trying for a year with no luck.

[SeasideSusie Remembering in reply to Bramble83]

Bramble

Your fertility specialist should know about the connection with thyroid and pregnancy. I would urge you to be on top of this, I have 4 grandchildren who never took breath due to my daughter-in-law's undiagnosed hypothyroidism - all due to GP who related her symptoms to something else. Please don't allow yourself to go through that heartbreak. If your fertility specialist doesn't mention it, then please do so yourself and ask them to check the guidelines for TSH and pregnancy and ensure you are regularly checked.

[Bramble83 in reply to SeasideSusie]

Thank you! I definitely will! Right now we don’t even know why I can’t get pregnant 😞

[Marz]

You also need thyroid anti-bodies testing - TPO & Tg to rule out Hashimotos.

[Bramble83 in reply to Marz]

Hi,

I had that done too...

TGAB was 10 IU/mL (0-115)

TPOAB was 9 IU/mL (0-34)

[Bramble83]

Apologies everyone, i’m new to this so didn’t realise about the ranges. Sorry!!!

Ranges were as follows:

T4 9 - 24

T3 4- 7.8

TSH 0.4 - 4.0

[humanbean]

For future reference, this document is very useful for someone who needs testing from an endocrinology department :

imperialendo.co.uk/Bible201...

The document discusses how to prepare for testing, reasons for testing, how to actually do a test, and how to interpret results.

Note that the document is updated fairly frequently. To find the latest version, do a search for "endocrine bible", then view and/or download the PDF version. (I find the HTML version doesn't work very well.)

[Bramble83 in reply to humanbean]

Thank you, that’s a great document!!!

[Hidden]

Can you remember what your cortisol results were? 15 mgs a day is a very low dose for primary Adrenal insuficiency, Are you on fludrocortisone as well? . How do you dose with your HC? If yoou are on Facebook then join the Uk Addisons info & support group where you will gte great help with you AI. Is your Endo conversant with pituitary/adrenal issues as most of them aren't?!

[Bramble83 in reply to Hidden]

I can’t i’m afraid! I had them done once and they said they were low but I refused to take anything and then had it done again 6 months later and it was worse and I was told I should really go onto the Hydrocortisone.

I really didn’t want to go on any tablets and the endocrinologist had to really twist my arm... had it not been for the fact that I nearly passed it whilst driving from the hypoglycaemia I wouldn’t have agreed to take anything at all.

I hadn’t actually realised how bad I felt until I started taking the HC, then I realised i’d felt pretty awful for about 12 months.

My aldosterone was 80 (reference 60-740) so at the low end but for the time being I’ve said I don’t want to take that unless I have to, so he said don’t worry and just make sure I eat enough salt.

Because I kicked up such a fuss about not taking any tablets he said just start on 15mg and see how I get on (sounds ridiculous but was really paranoid about putting on weight, which I haven’t at all). I have another appointment next month and he wants to discuss upping the dose then. He said their standard therapeutic dose is 20-25mg.

I still feel pretty knackered on 15mg and do take 20mg when i’ve got long days etc and do feel much better on it.

As I figure this is only going to get worse, I don’t want to take too much too soon.

Is that a silly way of thinking?

I’ll look at the Facebook group- thank you!

No I don’t think he is clued up about pituitary / adrenal. Is there something I should be asking?

[Hidden in reply to Bramble83]

Are you just taking HC just once a day? As your cortisol levels are low you are only taking a therapeutic dose so it only what people make naturally. HC only lasts in the body between 4-6 hours so you are going long hours without any cortisol in your body. I hate to say it but you are putting yourself at great risk of going into crisis & dying - I'm not being dramatic but people have died from Adrenal Insufficiency. None of us like taking medication but if it means we stay alive then it's worth taking the medication. Most of us take HC 3 or 4 times a day rather than just once. The hypo is also associated with low cortisol. To be honest it is a silly way of thinking about it - it is a very serious condition. Mine came about from a pituitary tumour secreting too much cortisol now it's removed I don't produce enough to live on.

[Bramble83 in reply to Hidden]

Hi,

I am taking it twice a day; 10mg on waking and 5mg mid afternoon.

I found some of my cortisol results and they are not that bad... synacthen result was 420 after 60 mins, which is still quite high I believe.

[Bramble83]

I can’t i’m afraid! I had them done once and they said they were low but I refused to take anything and then had it done again 6 months later and it was worse and I was told I should really go onto the Hydrocortisone.

I really didn’t want to go on any tablets and the endocrinologist had to really twist my arm... had it not been for the fact that I nearly passed it whilst driving from the hypoglycaemia I wouldn’t have agreed to take anything at all.

I hadn’t actually realised how bad I felt until I started taking the HC, then I realised i’d felt pretty awful for about 12 months.

My aldosterone was 80 (reference 60-740) so at the low end but for the time being I’ve said I don’t want to take that unless I have to, so he said don’t worry and just make sure I eat enough salt.

Because I kicked up such a fuss about not taking any tablets he said just start on 15mg and see how I get on (sounds ridiculous but was really paranoid about putting on weight, which I haven’t at all). I have another appointment next month and he wants to discuss upping the dose then. He said their standard therapeutic dose is 20-25mg.

I still feel pretty knackered on 15mg and do take 20mg when i’ve got long days etc and do feel much better on it.

As I figure this is only going to get worse, I don’t want to take too much too soon.

Is that a silly way of thinking?

I’ll look at the Facebook group- thank you!

No I don’t think he is clued up about pituitary / adrenal. Is there something I should be asking?