Has anyone failed a atch test or take... - Living with Lyme ...

Living with Lyme Disease UK

Has anyone failed a atch test or take hydrocortisone.. what is the correct dosage?

Yennn
Yennn

Hey can I ask

Does anyone in his group take hydrocortisone?

If so can you please comment

As I failed a acth

But doc is only prescribing me 10mg HC

After reading stop the thyroid madness

I’m told that is too low and will cause an adrenaline surge

25mg to 30mg seem to be what that forum suggest..

But I am dealing with mercury poisioning and Lyme disease

So I am unsure if it is an Adrenal insufficient problem or the lyme & mercury causing it therefore is dosaging diff to what the thyroid forum are recommending?

Thanks all

Hope you are all well

Yen

X

14 Replies
oldestnewest

What was your baseline cortisol and what was the result at 30 minutes when you say you failed the ACTH test?

Yennn
Yennn
in reply to Bramble83

Hey baseline was 251 rise 395

ACTH 4

Second test was 377 rise 424

Acth 6

Thank you

Those results are too low and do confirm a form of adrenal I sufficiency.

What I don’t know is what the relationship is with your Lymes Disease or mercury positioning.

Are you on steroids for any other conditions? Or have been in the past?

From the ACTH results I can see below, they are too low. Has the endo mentioned secondary adrenal insufficiency? This is when the AI is caused by the ACTH message from your pituitary being too low, so your adrenals don’t get the message to work, and over time they stop working.

There is no one size fits all dose on hydrocortisone and you want to be on as low a dose as possible, to feel well.

Your adrenals are still working, albeit slowly / at a reduced rate, so you don’t require complete replacement yet.

The higher your dose of steroids the higher the risk of long term side effects, so I think starting you on 10mg is probably very sensible.

The higher the dose the more likely you will suffer things like weight gain and a moon face (signs of being over medicated)

‘Standard’ dose for people with Addison’s, which is primary adrenal insufficiency is 20mg, although some take more (up to 30mg) and some take less.

Personally I have found 20mg to be perfect for me.

What next steps has the endo suggested? Have you started the 10mg HC yet?

Yennn
Yennn
in reply to Bramble83

Thank you SOOOO much bramble I have posted non stop in fb forums and your message explains it to me soo well and clear with reason behind your opinion. I thank you for your time to respond and helping out a stranger. Honestly you and your messages have made my day! I have spent three days and night consecutive researching.

I have no idea what the connection to adrenals to lyme or mercury poisioning is as this diseases is such a grey area with not much science behind it by the medical world yet. I know lyme will mess up the whole bio chemistry due to the nature of the bacteria.

I have spoken to three doctors at the endo clinic.. they decided to stop my 10mg HC Daily and to only take on sick days.

I was prx 10mg HC after first failed acth test but then after second which I only failed by 7nmol they said no more HC daily.

There reasoning is due to my normal base line. The range they gave me for morning 9am cortisol range was (240-600)

They said I passed twice 251 and 377 second time , they said I only missed the test by 7nmol the second which is good news for me. I went on to question about the low acth test all 3 endos said this isn’t a worry it would have been if I didn’t met the baseline cortisol.

I then went on to say that morning cortisol should be highest in the morning then tapers as evening goes on.. a patient with morning cortisol starting at 251 is low in my opinion.

I then went on to say acth 4 is low also

Morning optimal range should be between 10-20

I guess they do not look for optimal as the range they gave me was anything below 20 is a pass.

I have been in over an hour consultation with two endos over this, unhappy about my consultation I then had Over an hour conversation with the lead endocrinologist who runs the clinic who was the one that prescribed me 10mg but he said after the second acth test was done result was better and he agrees with his colleagues. He has now moved on to run the clinic of diabetic so I won’t be able to have future consultations with him.

I asked about further testing such as a mri to see pituarty glands they said they will run anti body test and if this comes back normal mri would be declined.

I feel completely confused as all the Advise I get on forums and fb groups say I need to be on HC but my Docs disagree.

STTM suggest doses at 25mg minimum and say 10mg dose is too low and will cause a surge of adrenaline due to the feed back loop.

All I know is is I’m sick, tired and I don’t feel good at all.

I have been on 10mg HC for two months

I finally could get out of bed In morning but come 5/6pm I would be in a state of anxiety the feeling of appending doom and at night suffered bad bouts of insomnia.

You suggested 10mg would be enough? In your opinion would U dose 10mg first thing in morning

Or split dose 5mg morning then 2.5 2.5

I have done a Dutch plus test

And a 4 point saliva test I am more than happy to share these results with you?

Although they both contradict one another too..

My Dutch plus was below morning ranged and then stayed highly elevated throughout the day

4 point saliva was below range morning

Low noon low after noon high evening.

I thank you with all my heart for your help.

Feel a weight lifted from me after reading your messahe. Thank you

And bless you.

Nearly forgot no I have been on HC before

It’s no problem at all, adrenal insufficiency is a difficult topic and very few people are knowledgeable in it.

Out of interest, what units were your ACTH measured in? One of your comments about the normal range being 10-20 surprises me slightly, as the upper end of the scale is usually higher.

ACTH is the missing piece of the puzzle to differentiate between primary (AKA Addisons) and secondary AI; with primary the ACTH will be elevated as the pituitary is shouting very loudly at the adrenals to work (but they are not capable of responding properly). In secondary the ACTH will be low / low-normal as it’s that message that I previously described to the adrenals, which isn’t working, not the adrenals themselves. Although, over time as they are not receiving the message to work, they gradually stop.

Testing you for antibodies in my opinion is likely to be pointless, as it is only with primary AI that you would get this, as it is autoimmune and the body is attacking the adrenals itself. That’s not the case with secondary and secondary AI will have no antibodies.

The gold standard test for secondary is the insulin tolerance test (ITT) so if I were you, I would push very hard to have that done; be warned though, this is an expensive test, so you may get a considerable resistance to getting it done.

The other (cheap) tests that are worth getting done are aldosterone and DHEA. Aldosterone is the other hormone made by the adrenals and is responsible for regulating blood pressure. In primary AI this result will be very low, whereas with secondary it will not. This is because in PAI the adrenals have stopped working, whereas in SAI they just aren’t getting the message, but for some reason they keep making aldosterone (presumably because they can)

Baseline at 8am-9am should be much closer to 500- the range they have given you is the 24 hour range and cortisol as you said, will be much lower in the afternoon.

I am unsure on the saliva tests, as have never had them done and they are more to do with free cortisol, rather than available cortisol in the blood stream, so I would pay little attention to them personally.

I would persuade your GP to do a random afternoon cortisol, as if you do have AI the afternoon reading should be considerably lower than the morning one, and will likely fall outside of the acceptable range. This will demonstrate to them, that you do have a problem.

Yes, I would try splitting the dose 5/2.5/2.5 and see if it makes you feel any better.

Hope that helps- as I said, i’m Certainly not a doctor but having being diagnosed with Addison’s I have had to get a good understanding of the adrenals and how they work 😀

Yennn
Yennn
in reply to Bramble83

Good morning bramble!

Thank you again for your help and that article! I have tried to read it I get some of it and others are a bit technical but I’m a quick learner and determined to be heard by my endos and gps.

The unit in acth was MU/L

I got 4 and then 6 in range it’s say <20MU/L is a normal?

I have seriously pushed for ITT and fasting glucose test as I have been suffering past year and half with disturbed sleep that has been deprememental to my life. I bolt awake every other hour or sometimes I fall asleep feeling like it’s been hours and boom body wakes me after ten mins. I am not dealing with anxiety or depression so I’m not anxious or have a lot of things on my mind. I want to sleep wish for sleep tried mediatation sleep stories sleep hygiene

It is as if I surge of aderenaline wakes me, I suspected it was due to low blood sugar and tried to discuss nocturnal Hypoglycemia or non diabetic hypoglecemia which was totally dismissed due to normal glucose test

They said If it’s normal further testing wouldn’t be required.

I feel at such a loss every single time I leave my gp practise so sad and feel hopeless, I read research so much to try find the path to food healhh and come in with information Iv learned, it is always totally dismissed.

I requested aldosterone and dhea and dhea s and my sex hormones

Which they said they would run a few

And when I got my results

They only tested

Androstenedione 2.3nmol <5.5

Testosterone 0.7nmol <1.5

170H progesterone 0.5 <6

Oestradiol 108pmol (100-2000pmol)

Funny thing the same was checked the year before

Result in 2017 were totally different

Oestradiol 144 (dropped 32pmol since

Test 1.3 dropped 0.5nmol

Androstenedione 4.1 (dropped 1.7)

They just ran the same test said with a smile normal.

My tsh was 0.35 (0.65-5.00)

Ft4 13 (9-21)

TT3 1.1 (0.9-2.5)

I strongly asked for FT3 but I was declined 5 times.

They checked LH and FSH

said normal then I later learned those test need to be taken at certain times of cycle again doctors dismissed me.

I asked my gp to check my Cortisol she did at 11am phoned me to say it came back normal. 🤯

I am on my 27th Doctor and third endo.

I really and not trying to be a pain I just want my health back. They all seem to go against the advice I get and information I read on internet and say the articles I read on STTM is outdated not based by science or some kind of excuse.

Despite failing two acth test

I know one was only 7nmol

I’m told if anti bodies come back no further treatment or appointments and no Iv learned anti bodies are pointless in secondary insuffiency and I understand the reasoning why.

I even just looked at my Lab result paper on it says REQUESTOR dhea.

But never have they checked it.

I really truly thank you for your time, advise and helping me if you have any more advise I would so appreciate it.

I felt so hopeless honestly until you message and explanation.

Iv always been a how, what why kind of girl lol esp about health and being so sick I have lost a lot my job home and doctors don’t seem to really care.

So thank you for caring and you have Defo cheered me up.

This is a great article that I found very useful

ncbi.nlm.nih.gov/books/NBK2...

I am super sorry, I don’t know what else to suggest- you seem really knowledgeable and are asking for all of the right things, the health service just seems to be really fighting you.

Is there any option for you to go private?

I’m not quite sure how to convert your ACTH into units that i’m familiar with; i’ve done a bit of Googling but it’s drawing a bit of a blank. Are you in the UK?

Hypoglycaemia is a classic low cortisol symptom; it was actually hypos that lead to my initial Addison’s diagnosis as I was having repeated hypos and losing consciousness but tested clear of all the diabetes and heart conditions. They only checked my cortisol as a last resort.

Your TSH seems quite low too- Are you on medication for that?

It sounds miserable to know that you are not well but to be unable to get the help and diagnosis you need.

When do you next see your endo again?

Yennn
Yennn
in reply to Bramble83

Hey bramble, please don’t say sorry you have been more than amazing with your time and help I sincerely mean that!

Thank you!

I wish I could go private if money wasn’t an issue not being able to work for year and half is unfortunately not an option for private endo. I will need to figure it out on my own or source my own HC now if I do actually need it. I tried coming off just 10mg daily like my endos advice and OH G the symtoms I was gtn was awful extreme fatigue sore joints etc

I have the exact same problem with hypo as you! Can I ask do u still take hypos or did tAking cortisal help you?

You said before u are on 20mg daily can I ask when do u take these? Do u split

10 5 and then 5 if so what times?

I thought my tsh was low again they said It ls normal within range. I am on no thyriod medication I have all the symtoms for hypothyroidism but again it’s dismissed.

I have just received a letter to see my endo on June 2019!!

6 months wait despite failing two test and they now have stopped my prescription.

Thank you for all ur advise I have written it all down and studied it.

Oh goodness, that’s rubbish, i’m really sorry to hear that.

Yes my hypos stopped completely since I have been diagnosed and out on HC.

Have you considered pursuing the hypos to get a diagnosis? I have leaned a lot since being diagnosed, and speaking to others; it would seem that ‘general’ symptoms, such as fatigue, don’t seem to be taken very seriously by endos / GPS etc.

When I went to the GP initially, I didn’t even mention fatigue etc (mainly because I hadn’t really noticed how tired I was), the only thing I discussed were the hypos.

As I was losing consciousness, they were very concerned and it got taken very seriously. I’m not sure how bad your hypos are, but mine were occurring a couple of times a week and were incredibly difficult to manage; I was passing out whilst driving, at work, after exercise etc. It didn’t matter how regularly i’d eaten, I just couldn’t get my sugars to stay up and was permently walking around with bottles of coke and orange juice.

Whilst waiting for the endo appointment (about 4 weeks), I bought a blood glucose monitor from Amazon (about £30) and took a reading every time I got close to passing out; they showed a repeat pattern of my blood glucose dropping below 3 and often closer to 2.5, which is when I would start to slip in and out of consciousness.

When I showed these readings to the endo they realised something was very wrong and as hypos can be very dangerous (unlike fatigue), they were determined to get to the bottom of it.

My HbA1c diabetes screen was completely normal (5.0); this makes sense if you think about it, as there are 24 hours in a day and my glucose was only low for a few hours each week, so the reading didn’t look abnormal at all, when averaged over all the hours in 3 months.

They then admitted me as a day case and did a glucose tolerance test for reactive hypoglycaemia- which again was completely normal.

At that point, there were few options left as it’s not possible for an endo to leave a 34 year old, passing out repeatedly each week; especially as it was happening whilst I was driving. This was when they did the cortisol testing and SST.

A hypo can kill you if you’re on your own and no one does anything- very different to feeling tired!

Have you tried capturing a log of your hypos on a blood sugar monitor? It could give you some very powerful data if you’re getting them badly? If they’re not that bad, it might not be that helpful.

Having low TSH doesn’t indicate hypothyroidism- if you were hypo then your TSH reading would be high- as it’s shouting loudly at your thyroid to work, when it’s not working properly.

I am not knowledgeable on thyroid at all, however a very low TSH Reading would indicate some sort of pituitary origin to me. Maybe start a different thread on here and ask just about that, as there are some super knowledgeable people on here, when it comes to thyroid.

I take my 20mg as follows;

10mg at 6.30am

5mg at 10.30am

2.5mg at 2.30pm

(2.5mg at 6.30pm ONLY if i’m going out in the evening, otherwise I miss this one out)

2.5mg at 9.30pm as it makes a massive difference to how I sleep.

I know people do take HC of their own accord but I would be really very careful of doing that, as it could be incredibly dangerous.

From your results you still have decent cortisol production from your adrenals and the danger is, that once you start taking HC, they will just give up.

If you then get poorly you will be 100% dependent on the HC tablets and would need an emergency injection kit for if you ever get a bout of diarrhoea or vomiting.

If you self medicate and end up with a stomach bug and have no emergency injection kit, you will find yourself very, very poorly, very quickly and need to get yourself very urgently to A&E and would need to explain you’d been self medicating with HC and hope someone gave you steroid replacement very quickly.

Your GP would need to be aware, as there are a lot of other things that can’t be prescribed if you’re on HC- I have to be ‘red flagged’ with my GP, dentist and the local ambulance service so they are all aware of my condition.

Likewise if you ever need any type of surgery or an operation of any type, you would need to be put on IV Hydrocortisone, otherwise you would be at a very high risk of adrenal crisis / death. If it wasn’t in your official notes that you were steroid dependent, I don’t know how you would explain it or get the treatment you would very urgently need.

You would also need to wear a medical alert bracelet at all times, and make sure all your family, friends and work colleagues were aware of your condition, so that if you were ever involved in an accident or car crash etc, it was immediately visible and you would be given the HC you needed, otherwise again, adrenal crisis and death are a very real possibility.

The last thing I want to do is scare you, but going on steroid replacement is a life long commitment and I would hate for you to enter into it without all the facts.

I can’t imagine feeling how you’re feeling, but I do genuinely understand wanting your health and life back. I just want you to go into it with your eyes wide open.

Hopefully all the above gives you a bit more info and maybe another option to consider with the hypo diagnosis?

Yennn
Yennn
in reply to Bramble83

Good morning bramble,

Once again I thank you for your amazing reply! And taking the time to help me! You know sooo much and it’s even more amazing you are willing to share your knowledge with others. Thank you. Really!

Okies seems we are both on same wave length. I booked my self in to llyods pharmacy to do a diabetic type 2 test because lol my gp refused to do a fasting glucose test and said wait till June 2019 when you see the endo again...

Yes this is the type of s**t I’m dealing with.

The pharmacist checked it and it was 5.3 normal like yours. I asked to buy a machine she strongly advise against it as she said i would be creating problems for myself, looking for something that isn’t there. I told her I am on HC and I have recently changed my diet to try stabilise my blood sugar. I eat high protein low carb break and eat every 3/4 hours with snack with protein and complex carbs with a more carby dinner and Before bed I eat a banana and it’s helped my hypo a bit.

She went on to say anything about 10 is a concern I said to her what about below 3 she said for your age it’s fine since your young. I am 32.

So I left there and went to boots bought my own machine.

When I first got sick I went from heathy and able to In a wheel chair for a year within a few weeks with no explainatiom, prior to the few weeks I kept losing consciousness driving to work, then I opted for train and would loss it there too. They ran complete blood counts and then it came back normal the health service then left me. I am in uk, in scotland. Believe me I have tried in every way possible, to be heard at my Apt’s I have brought in my own heart reading monitors jumping from 70bpm upon standing to 172 within a matter of minutes.

Again they offer me anti depressants..

I got the STT then I’ve went down the hypo route.. despite failing two STT docs still seem to be not treating me, Barr saying take HC when sick, or having dental work, surgery.

I’m sick every day due to chronic Lyme so I’m unsure where that even stands.

Thank you so much for giving me the honest truth about HC and the dangers of self medication. I do understand.

I feel I’m in a lose/lose situation with it tho.

If I don’t self medicate.. I’m struggling so badly.. with a morning cortisol of 251 I consider that low also 377

I’m hoping if I do go down the self medication route that I only take small doses like 10-15mg so I don’t risk myself too much with higher doses.

I wonder if you know if me taking HC short term whilst trying to kill Lyme bugs (I guess that’s the stressor in my body) that once I have I will no longer need HC and the body will then produce cortisol once again as I’m secondary insuffiemcy rather than primary?

I find it ever so interesting about taking 2.5mg at 9.30 for a better sleep. Could you explain to me how this works? As I read dosing too late at night may cause sleep problems due to high cortisol at night or causing a spike but I tried it last night and guess what for year and a half I slept like a baby! Right through 🙏🏽 Thank you thank you for this! I woke up happy and feeling like human. It’s been a long dreaded war with sleep.

I’m thinking if I dose 10mg

It would have to be 5mg 8am 2.5mg 12 and then 2.5mg 9.30pm? I wonder the period between 12and 9.30 would it be too long without Hc?

Thank you bramble truly have the merriest Christmas. Yen x

Goodness, it really doesn’t sound like anyone wants to help you, which is so unfair.

I think buying the blood glucose machine was a really good idea and I wouldn’t expect someone in Boots to understand the link between low glucose and low cortisol.

The point is that at 32, if you had a reading of 3 because you hadn’t eaten for a long time etc, then potentially she would be right and it wouldn’t be a problem. The reality is, that your hypos could be, being caused by another reason (ie low cortisol).

How often do your hypos happen? The important thing will be to capture your blood glucose reading at those points and keep a log of them.

You would have to be really careful that the short term use of steroids doesn’t completely stop the functioning of your adrenals, but in theory you could come off them at a later point. If you did decide to come off them, you would have to taper down very slowly over a course of months, to see if your adrenal glands would ‘wake up’ again.

Reading your comments about your heart rate, have you researched POTS? It’s not something I know a lot about but I have heard numerous people mention it and a significant part of it seems to be heart rate.

This is from their website: Symptoms include headaches, fatigue, palpitations, sweating, nausea, fainting and dizziness and are associated with an increase in heart rate from the lying to upright position of greater than 30 beats per minute, or a heart rate of greater than 120 beats per minute within 10 minutes of standing.

Here’s a link to the website potsuk.org/symptoms

When you read about cortisol at night and it keeping you awake, they are talking about much, much higher doses; 2.5mg is incredibly low. I am not 100% certain as to how it works but there are several clinical papers / studies that have been done that shows a low dose overnight helps with sleep. I presume it is because your body isn’t struggling with low cortisol, so it allows it to switch off properly and enter into a much deeper sleep.

Knowing when to split the doses is tricky, as at 10mg you don’t have much to play with. Cortisol lasts 4-6 hours in your body, depending on how quickly you metabolise it, so I would be tempted to spread your doses out a bit more; maybe 8am, 2pm and then 9.30pm.

The good thing is that if your endo has prescribed HC for sick day rules only, then at least you have a medical record of it, so a lot of what I said in my previous post wouldn’t be as relevant; you’d at least have an official medical record, saying you’re on HC.

So you have somewhere reliable to buy it from?

You are more than welcome for the help- it seems so unfair to be so poorly and for no one to help you. I’m certainly not a medical professional but if any of my experience can help you out, then i’m super happy to try x

Yennn
Yennn
in reply to Bramble83

Hey bramble! How are you?

Thanks for your message I have had a real bad crash .. bedbound for two days so far and It’s my dads 70th party tmro night i hope I some how make a miracle recovery! No idea what happened to make it this bad all I got was my time of month.. and floored like literally can’t even stand.

Since gtn my glucose monitor Iv been checking it upon wakening and before bed and 3am in morning so far it’s been between 5nmol and 6. I have added in a new supplement called berbermine

It’s meant to stabilise blood sugar.

Since taking 15mg of HC a day

Ive done the dose of 7.5mg 8am 5mg 2pm 2.5mg 9.30pm

I am still dealing with extreme fatigue

I get up for breakfast crash out then up again for lunch then sleep

No tv, can’t get up for a walk. It’s butual.

Yeh I know a lot about pots, Iv had ecg heart monitor to wear for 3 days and nights a tilt table test

Just like my hypos they aren’t constient they come and go every other day and I am also on ivabradine heart stalising med and sadly for me nothing showed at the time of testing.

I think it all come down to the stressor in my body lyme. But the medical world doesn’t accept yet chorinc Lyme only acute Lyme which is madness. I guess my body system is all out of sync and Lyme bacteria is causing havoc.

Year and a half now.. left suffering but il defo try everything I can to beat it.

I hope you are winding down to Christmas and have the best time

Thanks for sharing your wisdom and for caring and helping. Iv learned lots from you! X

Mdaisy
MdaisyAdministrator

Welcome to the LWLD community Yennn

I see another member has been able to answer your question imparting their knowledge of this test and other issues surrounding Lyme Disease. This is great to see as this is exactly what this community is for to share experiences with each other. Thank You to fellow member Bramble83 for sharing their experiences. :)

As a fairly new member often referred to as a 'newbie' I noticed that this post isn't locked to this community only. Therefore, I have provided you with a link with all the information you need about this and how to lock posts if you so wish to in the future.

healthunlocked.com/living-w...

It is awful that Chronic Lyme Disease isn't recognised by the Healthcare Professionals and we really need a parliamentary debate about Lyme Disease and all the issues surrounding it. If you haven't done so already, there are petitions that you can sign in the Petition section of the Topics here in the community.

Unfortunately, we need over 100K signatures to secure a debate plus a MP that is willing to fight for us and put their head over the parapet to highlight the injustice of the system to many thousands of sufferers. I am so sorry you are struggling and hope this community is helpful and a form of online support for you.

All the best

Emma :)