Results from Medichecks thyroid panel are in...

[Entwicklung]

Thyroid numbers are looking good according to the drs comments and there seems to be no autoimmune responses there either, however...

[Entwicklung]

Ferretin still on the rise as well as CRP.

Seriously considering my heterozygous Hemochromatosis causing the issues at this point despite being reassured it 'shouldn't' be this.

With my BP, HR and exertion issues I'm also worried about it being heart related.

The search continues.

Any thoughts / opinions welcomed as always.

Ferretin 713, crp 3+

[NotElissa in reply to Entwicklung]

My ferritin is about 450 which is about right for a post meno woman

I think  SlowDragon might have some figures for ferritin levels. I was told by a doctor that it has to be over 900 before you need treatment. Have you asked a doctor about it?

[sparkly in reply to NotElissa]

Omg I never knew that. Thank you so much for posting.I'd just got all my iffy bloods normal and likely reversed my fatty liver. My ferritin had always been high for years, but this last year, I'd got in normal range. All my efforts had paid off on last test and even got CRP in normal range too.

Only then to see my ferritin had jumped up over range to 245.

Oh I'm so happy to have learnt that this is normal and and 99.9% certain now I'm post menopause too 🎉🥳

[Entwicklung in reply to NotElissa]

Well, over the period of one year my ferretin has gone...610

624

700

713

The GP does not seem the slight bit concerned despite major symptoms all over the place.

[TiggerMe Ambassador in reply to Entwicklung]

I'd suggest giving blood as this is the only way to lower your levels, I encouraged my sister to do this as her GP refused for 18 months until he finally realized she has haemochromatosis and is now regularly having blood drawn 🫤

[Entwicklung in reply to TiggerMe]

I need to try this. I'm in a similar boat hemochromatosis wise but I only inherited one copy of the gene so they say it's unlikely to be my issue. However every other test under the sun comes up unremarkable and I suffer symptoms every day now and they're getting worse.

[JumpJiving in reply to Entwicklung]

Entwicklung Tricky - with suspected adrenal insufficiency (possible Addison's), you shouldn't be giving blood. Until stable on treatment for adrenal insufficiency, you likely shouldn't even have a venesection. At the very least, you would need to updose beyond even normal levels of medication for adrenal insufficiency to have a venesection done. That's the sort of question that requires a professor of endocrinology, probably at one of the London hospitals. So, if you are talking to haematology, ask them to consult accordingly.

I assume you are on a low iron, limited vitamin C, diet?

(amongst other things, I am primary carer for an elderly relative who has to have regular venesections)

[Entwicklung in reply to JumpJiving]

Ah thank you again for your help and info, always very useful to me.

Yes I avoid vitamin C and I suppose iron at the moment (i.e no fortified foods etc)... I'm not on much of a diet at the moment it's more random stuff what I can stomach. Eating larger amounts seems to kick off my issues at the moment so I'm not eating the best in all honesty.

I understand what you say about the venesections, I have considered this recently... In my 'frantic attempts' trying to find the route cause of my problems I'm left with hemochromatosis, adrenal issues or heart problems being the culprit so trying to make progress in all areas at the same time, I know this is probably a nonsensical approach. I can also see how these things could be intertwined. Thinking logically I can't see how a heart problem would cause a low cortisol but I can see a mechanism for hemochromatosis and even adrenal issues to cause heart issues. I'm very much hoping I don't have any heart damage as yet but I'll find out soon enough as I have an echo at the end of the month.

I'm really glad you mentioned this here because I did join the give blood site recently in my desperation to do 'something', but I was yet to make an appointment to try it. I think deep down I had reservations for the reasons you mention here.

Again... Many thanks.

[SlowDragon Administrator in reply to Entwicklung]

Your CRP (inflammation) is only slightly raised so probably fine

But inflammation can cause ferritin to rise

mft.nhs.uk/app/uploads/2019...

Ideally you would do full iron panel to see what iron level is

It’s possible to have high ferritin but low iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

[Entwicklung in reply to SlowDragon]

I've had the full iron panel done recently (and a few times through 2024)... Here's those results:

Ferretin. (30-400)

Jan24 - 610

May24 - 624

Oct24 - 701

Iron (5.8 - 34.5)

Jan24 - 19.7

May24 - 26.7

Oct24 - 20.4

Serum transferrin (2.0-3.6)

Jan24 - 2.07

May24 - 1.92

Oct24 - 2.28

Se unsat binding capacity. (50-90)

Jan24 - 52

May24 - 48

Oct24 - 57

Transferrin % saturation (16-50)

Jan24 - 38%

May24 - 56%

Oct24 - 36%

In May all values were outside the ranges but no action taken / suggested.

[SlowDragon Administrator in reply to Entwicklung]

Well nothing is wildly off

Had you been unwell with COVID or anything else in May24?

[Entwicklung in reply to SlowDragon]

Not that I'm aware of, just similar ongoing issues.

[TiggerMe Ambassador in reply to Entwicklung]

You'd benefit from getting your B12 up to top of range, a sublingual like Nature Provides works well

[Entwicklung in reply to TiggerMe]

I'll work on this now my blood tests are out of the way, thanks ,,

[greygoose]

FT4: 16 pmol/l (Range 12 - 22) 40.00%

FT3: 5.6 pmol/l (Range 3.1 - 6.8) 67.57%

Your FT4 is quite low-ish, and TSH on the high-side for someone on thyroid hormone replacement. What are you taking? And how are you feeling?

[Entwicklung in reply to greygoose]

Ah I'm not on any thyroid meds, this was my initial investigations into thyroid issues.

[greygoose in reply to Entwicklung]

OK. So what time was the blood draw?

If it was before 9 am then you're not hypo yet. But you could well become so. I say that because your FT3 is higher than your FT4 percentage wise, which is often a sign of a failing thyroid. Do you have hypo symptoms?

[Entwicklung in reply to greygoose]

Hi, sorry I lost track of this as I got a bad cat bite yesterday and not feeling so good (got anti-biotics to take).

The blood was taken at 10:20 am (the earliest I could get it done in the clinic).

I looked through the hypo and hyper symptoms and I would say I have a combination of both - would that mean the problem lies outside of the thyroid potentially?

[NotElissa in reply to Entwicklung]

Oh no not your cat I hope. I have a lovely little cat who never bites. He is my profile picture

[Entwicklung in reply to NotElissa]

Haha he's so cute!

And yeah it was my cat, but not his fault at all. The dog seemed to have a bad dream or something, woke up and bit the cat who was with me getting some strokes... I intervened and the cat just bit whatever was in the way, with all his might.

I can see why most animals don't mess with cats, my arm's ballooned right up.

I attached a picture of my guy (he's fine btw)

Fluffy boiiii

[NotElissa in reply to Entwicklung]

Here is mine eating cat mint

Cat in mint

[greygoose in reply to Entwicklung]

Sorry to hear about the cat bite, that's nasty.

So, your TSH wasn't at its highest. But TSH is not that reliable, anyway.

As for symptoms, there's no hard and fast division between hypo and hyper symptoms, a lot of them are the same. And, it's not unusual for people to believe they have a mixture of them both - and perhaps they do because the thyroid horomone you have in your blood is not divided equally amongst all your millions of cells, some can get too much, whilst others get none at all. So, I would say that, as things stand, it's a situation that needs careful watching to see how it develops, because at the moment, it's inconclusive.

[Entwicklung in reply to greygoose]

Thanks Greygoose. I really appreciate your advice and support.

[greygoose in reply to Entwicklung]

You're welcome.

[JumpJiving in reply to Entwicklung]

Entwicklung Be aware that if adrenal insufficiency is diagnosed, you would be following sick day rules when on antibiotics. That means increasing the hydrocortisone dose. As you do not yet have HC, be especially careful whilst on antibiotics. Your body’s cortisol will be being used faster than usual and will contribute to you feeling rough

[Entwicklung in reply to JumpJiving]

Oh wow I'd not read about that. Thank you 🙏 The arm definitely isn't helping either!

Can I ask if there are any painkillers advisories, just in case?

Do you know if a consistent 180nmol 9am cortisol score is quite likely for the insufficiency, or just an unlikely possibility? I've been very 'locked in' to this path as many of my symptoms match and I don't know what else would lower the cortisol number. However, one thing that confuses me is my BP is generally HIGH rather than low, but it fluctuates, which I feel makes me not fit the full profile.

I'm very eager to find out for sure, as from what I can see having adrenal insufficiency is no joke.

I hope yours is well managed now and you do well on the medication?

[JumpJiving in reply to Entwicklung]

Entwicklung I am not sure about painkillers. I would avoid opioids, but for anything else you would need to check the Patient Information Leaflets.

As a layperson, I would think adrenal insufficiency the most likely cause of your low cortisol. Cannot be 100% definitive, but seems likely.

Blood pressure varies. It is normally low for primary adrenal insufficiency, but often high for tertiary adrenal insufficiency.

Adrenal insufficiency is not fun. Some patients do get back to near normal, others have a battle. I seem to be one of the “lucky” ones with a chance of reversing it (mine is thought to have been caused by a steroid-based inhaler). Not guaranteed, but optimistic that might reverse it within the next year. Most have it for the rest of their life.

[Entwicklung in reply to JumpJiving]

You're a star, thank you for letting me know about that. Ironically I've been taking some co-codamol as advised by a&e 🙃

I'm taking it as easy as possible at the moment anyway until I find out more information.

Really appreciate your opinion too; you end up being in doubt when you're on a long diagnosis journey. I Still have ACTH, DHEA and Adrenal antibodies test results to come, as well as a renin / aldosterone ratio. I'm not sure what to expect but just wanted as much information as possible. That's interesting what you say about the blood pressure as I'd not seen that either (although you have informed me before I believe so I'm sorry about that)... I wonder if we're going to be on similar journey's as I once had a steroid inhaler which I stopped taking when my breathing improved.

I'm glad to hear you have a positive outlook with yours and that you're doing well with it all!

I'll keep you posted.

[JumpJiving in reply to Entwicklung]

Entwicklung

I don’t think you’d mentioned inhalers before. Which ones were you on and what dose? When did you stop using them?

Opioids can also cause tertiary adrenal insufficiency if used long term. It’s not often mentioned in the UK, but the figures reported in the USA are shocking

[Entwicklung in reply to JumpJiving]

Appreciate that info, will give them a miss now and work with paracetamol. I generally don't take pain meds but requested by A&E so I went with their advice.

Ah I may have mentioned it elsewhere or to somebody else (brain is foggy)... I was on fostair 200/6 (the figures I could be making up there but that's my gut instinct for the name.

Writing this at 2am of course, waking this morning with an irritating phlegmy cough to add to the mix. Chance of getting back to sleep must be less than zero tonight.

I also didn't mention that I had a little 'episode' the morning after the cat bite... Sitting down, HR jumps from 80 to 140 for no reason and I feel like I'm going to drop. I felt the need to stand up so I did that, unsure why. Pain/pressure in the neck, I would imagine from lack of blood or two much perhaps. Lasted a minute or two and then it just spontaneously calmed back to normal, fortunately. Not entirely sure what that was, but not pleasant.

[Jaydee1507 Administrator]

Another small levo dose increase may well help you further. TSH is well over 1 and FT4 not high.

[SlowDragon Administrator in reply to Jaydee1507]

He’s not on levothyroxine