How to support adrenals: Hello Could someone... - Thyroid UK

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How to support adrenals

Daffers123 profile image
45 Replies

Hello

Could someone please advise me on how to support my adrenals. My cortisol is out of kilter (high night, low day) and DHEA is low but overall cortisol is just above range. Genova say I have Stage 2 Adrenal Insufficiency.

I am unable to take the Nutri Products (fillers etc. ) or anything with soy in it.

Could anyone suggest anything please ? Any herbs or glandulars which would help.

I have recently 'failed' after trying T3 alone for a couple of months and suspect its the adrenal issue which is to blame. Endo put me back on T4/T3 combo for time being but would like to gt adrenals sorted but endo and doctors wont hear a thing about adrenal insuffuicency.

Thank you

PS I have a good diet and keep sensible hours (!) and live quite calmly

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rosetrees profile image
rosetrees

This is similar to what I said to sip1 below. Apologies for partly repeating myself.

Have you thought of trying adaptogens, such as rhodiola, which help even out highs and lows? Also high doses of Vit C can sometimes help - I take 3 - 4 g a day.

Without knowing the figures, your results are similar to mine. I was mid, low, low, low. My total cortisol was 22 (from memory). I take nutri adrenal extra and hydrocortisone.

As with everything, it's going to be experimenting to see what works for you. Another thought is licquorice drops. They were suggested to me because they help the body retain cortisol, which might help raise the day time lows, but it raises blood pressure, so I couldn't take it."

I also take Nutri's AdrenoMax along with thyroxine and Nutri Thyroid.

Daffers123 profile image
Daffers123 in reply to rosetrees

Hi Carole

Do you have a supplier of good quality rhodiola (is it roscea as well) ? Or ashwaganda ? I would like to get some pronto. thanks for other info, will crack on with the Vitamins in the meantime.

I have been put back on thyroxine but with some T3 but - first dose this morning - heart racing again, very unpleasant.

Thanks

rosetrees profile image
rosetrees in reply to Daffers123

Hi Daffers

I'm afraid I can't recommend a supplier. I don't take aschwaganda, and the rhodiola I have was bought from Amazon. I think it's Nature's Own, but I didn't research quality. Hopefully someone else might know.

Daffers123 profile image
Daffers123 in reply to rosetrees

Thanks Carol, never thought of Amazonb. What a dope

A

Smudgeypower profile image
Smudgeypower

hi daffers i know how frustrating it is with getting support you need, from what iv learnt with adrenals and its a lot it depends how bad they are and what stage mine are stage 3 and iv tried all the herbs and vitimans nutri adrenal and they do help but not enough to get me better so endo is putting me on hydrocortsione due to a abnormal adrenal test as thats what i personally need as your at stage 2 and you cant do the nutri stuff dr peatfield reccomeded this regime for adrenal fatigue to me which was as follows

3-5mg vit c a day

100mg coenzyme q10

siberian ginseng/ licorice ticturn 2-4 times a day

good multivitiman

b5 b12 high amounts

500mg magnesium

vitiman d /calcium

you can get his book how to keep your thyroid healthy dr barry peatfild and adrenal fatigue 21st century stress syndrome james wilson brilliant books and i think would really help you loads of information im so glad i bought them.unfortunatly it does cost a bit getting the supplements as iv found but you can shop around easily for best prices. also from james wilson book having half teaspoon seasalt in water on waking supposed to be good.

also diet wise what improved things for me was cutting out tea coffee as this is really bad for adrenals even decaffinated, sugar is huge as it affects blood sugar and a big no no with adrenal health, eating good protein to keep blood sugars even through the day so you dont crash (example i have protein shake breakfast or porridge pancakes with protein powder in, include hummus and rice cakes for snack with whatever im eating , lunch include some protein baked beans,eggs, meat ect , again main meal with some protien and veggies, to much fruit can make things worse because of the sugars so try to stick to lower sugar fruits, a few are blueberries strawberries, cut out proccesed food as much as you can and a caveman/paleo diet seems to be the best as its what we should be eating also lots of water least 1-1.5 litres of water a day bottled if possible as no nasties ,take a good probiotic to keep your gut flora happy seems to be very important.

gentle excercise like yoga gentle strolls,swimming, no gyms or hard workouts can make things worse phew sorry long reply but thought this might be helpful start i did not think much about diet but realize it plays a huge role in getting better best of luck in getting sorted hope this is some use

sarax

MidnightBlue profile image
MidnightBlue in reply to Smudgeypower

I am also trying to work out how to support my adrenals, but I get overwhelmed by how complicated it seemed to be. Thanks for this really informative post.

Daffers123 profile image
Daffers123 in reply to Smudgeypower

Thank you so much for all the information, it will be very helpful and I will certainly read the two books. I am having the ACTH stim test (2 day) within the next week so perhaps that will show something the endo will actually notice. Dietary advice very helpful, can I just ask about the protein powder, do you have one which isnt derived from soya and if so, what make please?

Thanks

Smudgeypower profile image
Smudgeypower in reply to Daffers123

hi daffers123 im using solgar whey powder from amazon i think it has got dairy and some soya 1% sorry, seems to be lot of soy free whey protien powders avalaible on amazon had quick check for you, those books will help give you lots of knowledge and support to move forward its alright taking a bit of info here and there but you need a some clear direction with this rubbish illness the adrenal fatigue james wilson book will be perfect start iv only got this far and finally diagnosed with adrenal problems as iv helped myself its hard when your pooped all the time but you have to take charge and just remeber not to eat or take supplements medication after 9pm day before test i just had the 4 hour one so sounds like your on the right road best of luck hope you get some answers

sarax

Heloise profile image
Heloise

I just found this great article today with step by step ideas. Similar to the posters above.

health-matrix.net/2013/06/2...

lola1956 profile image
lola1956 in reply to Heloise

This is a very good article thanks for posting

Daffers123 profile image
Daffers123 in reply to Heloise

Thats a great article, easy to follow and apply . thanks Heloise.

Jennyfluff profile image
Jennyfluff

Hi there!

Sorry yo interrupt the convo! Can you please tell me what these stages are please?

I have had three tests, two below low normal, one very low normal. Going now for saliva test and short stimm test.

Thank you!!

Oh I'm on NDT and T3

Thank you

Daffers123 profile image
Daffers123 in reply to Jennyfluff

Hi Jenny

I think you should put up a new post asking that question as Im not very knowledgable but one of the Admins or more experienced members will be able to explain properly.

Im not sure if the Genova Labs have a web site which might explain it more thoroughly. I have had 2 of these tests done, one last year and this one in June and I was very worried when the report came back saying I was at Stage 2 - which isnt so good, especially when they list the possible causes. As I understand it Stage 3 is the most serious (and poss closest to Addisons Disease) .

I am having the ACTH stim test this week (had to insist to my endo) - a 2 day test so lets keep in touch and see how we do and what we learn!

Andrea

Churchie profile image
Churchie

Hi daffers. Your post above repeats what many people here have said, that endos and doctors on nhs won't recognise adrenal insufficiency and I wondered if anyone here knew why? I have no specialist medical knowledge but to have a part of your body that is working below par and causing certain symptoms would seem to me to be within normal medical experience. Trying to clue myself up on the controversy.

Thanks

Heloise profile image
Heloise in reply to Churchie

Churchie, I just read why this is so and it might be in the article I posted above. She said there is no medical code for this condition and therefore it is not really identified. That is a pitiful excuse but doctors have no control over that I suppose.

Daffers123 profile image
Daffers123 in reply to Churchie

I agree totally. Its the total lack of open mindedness with the docs and endos when they could be educating themselves using our research and tests and helping us get better more quickly.

Dont understand at all

ukangell profile image
ukangell

You need a good B vit complex. Also dglr (liquorice root with the bad part taken out).

Daffers123 profile image
Daffers123 in reply to ukangell

Thanks . We must all rattle with alll the supplements we need to take for this thyroid stuff! Still its all good and if it works, worth the expense etc. Thanks will try both things

ukangell profile image
ukangell

You need a good B vit complex. Also dglr (liquorice root with the bad part taken out).

Peacefullbliss profile image
Peacefullbliss

STTM madness has a new helpful link.

stopthethyroidmadness.com/a...

It explains how to treat highs and lows. It is more harmful to treat your adrenals wrongly by taking just anything which may not be what you need. I have had insomnia since last October. Had a saliva test done privately a couple of weeks ago. I am low (very low), high, low, high. I am taking adaptogens in the day time at the times I am low and at night I am taking vitamin c, magnesium, zinc and Seriphos for the high night time levels.

Daffers123 profile image
Daffers123 in reply to Peacefullbliss

Hi Peaceful

So you are see sawing between high and low . Insomnia is something that I was suffering with when this first became a problem in may and the high night time cortisol must have been the cuplrit. How dreadful to have had it since October, you must be exhausted. I have had some success with Seriphos but am not sure how long to take it for. Also have magnesium and zinc so will keep it up. What do you use as adaptogens ?

Peacefullbliss profile image
Peacefullbliss in reply to Daffers123

I'm using 5HTP for mild depression. Lack of sleep has done me in. And I take

Ashwanganda during the day during the times my cortisol is low - first thing in the morning and at noon. As my nighttime starts to lower the daytime will start to even out. Went to the sleep clinic two weeks ago showed the consultant the private cortisol red results. He completely poopood the possibility that high night time cortisol is causing insomnia. He said he is now and expert on cortisol I will have to speak Tony endo about the results. Also as I had the ACTH which did not show up and issue I do not have adrenal issues. It's a good job I don't rely on my various doctors knowledge for my health. I wonder sometimes what exactly do they know.

greygoose profile image
greygoose

Hi Daffers,

You say have a good diet. Unfortunately, that is meaningless because peoples ideas on what constitutes a good diet vary tremendously.

Thing is, are you getting enough fat and salt? Lots of people cut these out because they think they are the badies, but they are essential for a healthy body and you need to get enough of them. So, no low salt and no low fat diets. OK? lol

Hugs, Grey

Daffers123 profile image
Daffers123 in reply to greygoose

Hi Grey

No, no low fat low salt diet for me. Proper butter, meat , sea salt etc. as you say. Thanks for that, and as I have lost so much weight on T3 only, am hoping to fatten up a bit.

Hope you are well

Andrea

greygoose profile image
greygoose in reply to Daffers123

:)

Hi Daffers,

Adaptogens work with your body and not against it. So, it will balance the cortisol levels and even them out. Check the reviews online on amazon and on herb, for example, for Ashwagandha. However, Ashwangandha is also used as a thyroid stimulant. So, please be careful since you are on T4/T3.

Rhodiola Rosea is often taken for low cortisol levels.

I wouldn't add more complications to the current scenario.

Perhaps you need to go down the vitamins and minerals route.

Safely, you could add magnesium, zinc, Vitamin C, B12, and a good b-complex that is high in B5. Thorne Research has a product called stress b-complex that fits the need.

All these are easily burned out under stress and need to be topped up on a regular basis.

Finally, cut out sugar, totally, from your diet and cortisol will balance itself gradually.

Daffers123 profile image
Daffers123 in reply to

Melanie, thanks for that. I was about to order ashwag but you're right I dont need a thyroid stimulant, having not been able to get used to T3 in tiny amounts for all this time! Even today, after taking 1/4 of Cynomel with some of the Levo, I got the palpitations etc. again

Prob the vits and minerals route is safest for me and the Stress B-complex sounds worth getting. And good advice on the sugar.

Thank you again for your advice

in reply to Daffers123

Pleasure, Daffers, I hope you'll start to feel better very soon.

cc120 profile image
cc120

groups.yahoo.com/neo/groups...

I would encourage you to start some sublingual methyl b12 + a good ionized multimineral like a Concentrace, a good multi B like Swanson's Activated B's with methylfolate not folic acid and around 1000 mg of a real vit. C and not ascorbic acid per day plus magnesium at 5 mg per pound of body weight.

gotmag.org/magnesium-defici...

groups.yahoo.com/neo/groups...

You will want to make sure you are supporting your adrenals. Adrenals run on salt, so you want to get some of the unprocessed sea salt, like Celtic Sea Salt and take 1/4-1/2 tsp in 16 oz of water several times per day. Plus, you want to get a good ionized multimineral, a good multi B like Swanson's Activated B's with methylfolate not folic acid and around 1000 mg of a real vit. C and not ascorbic acid per day.

healthunlocked.com/thyroidu...

meanwhile if your adrenals are stressed ensure you take a really good multi vitamin before bed plus at least 1000mg VIT C and Liquorice root tincture which should be available from G Baldwins Herbal Suppliers on the web in London.

healthunlocked.com/thyroidu...

The diarrhoea could be a symptom of high adrenaline compensating for lack of cortisol. If you have low or high cortisol levels T4 doesn't tend to get converted very well, causing high T4 levels. Low cortisol can also cause a low TSH that is not reflective of your thyroid function. If your TSH is low, conversion to T3 is usually slower too.

medhelp.org/posts/Thyroid-D...

I worked on my adrenal repair as natural as I could. I supported them with DHEA-5 - sea salt and high levels of Vit C to repair them. The adrenals are complicated - if not more so - than thyroid can be for a patient and treatment/conditions vary widely from patient to patient. I found good things doing this treatment plan and why I chose it was I wanted to not go to extreme levels to medicate if not needed - ie - HC treatment.

I like to start slow if I can and see what works minimally - then just jumping on the horse and going full speed on something I would have to do for life after I start.

DHEA adrenal support, also for depression - Women tend to convert excess DHEA into testosterone, which can lead to acne and facial hair growth.

medhelp.org/posts/Thyroid-D...

I started natural treatment for my adrenals; my cortisol was very low during the day and then very high during the night. I have been taking Adapt during the day which has vit B6, panthothenic, ashwaganda and other extracts and then I would take Seriphos at night which contains phosphorylated serine.

healthunlocked.com/thyroidu...

Juliet - I buy it frequently from an online retailers in the US - never once had a package stopped. I take Natrol 10mg DHEA - it costs $3 for a bottle of 30 pills (this is the same brand/dosage I was prescribed on the NHS - but they won't supply this any more).

If you import then keep your total cost under £15 so that it gets through customs without a charge. If you order more than £15 worth then your package will get stopped.

healthunlocked.com/thyroidu...

I felt dreadful for quite a long time, but over the summer this year I started getting better and now feel pretty good! I'm on a cocktail of thyroid hormones, minerals and vitamins, and DHEA and progesterone. No unwanted side-effects just a great improvement.

thyroid-rt3.com/adrenals.htm

If your adrenals are low causing unstable temperatures then they need support, Isocort can help in mild cases or Hydrocortisone in more severe cases. ...

the importance of cortisol to thyroid treatment, it is the most common cause of failure of thyroid treatment with iron a close second to it. The combination of low iron and low cortisol makes for a very bumpy ride when trying thyroid replacement unless you sort it out FIRST.

Daffers123 profile image
Daffers123 in reply to cc120

I just wanted to say thank you very much, CC for all the very helpful infnormation. Also, I was pleased to hear that you felt awful for a long time (sorry) but its given me hope as I have felt really unwell since May and it seems never ending.

Its interesting you mention the cortisol and iron, as someone on Paul Robinsons Recovering Facebook page has made comments about my iron going into storage and taking milk thistle to clear the liver and getting a full iron panel done.

Needless to say no medic has picked up on the iron and they dont consider the adrenals at all. Yes my temps are very unstable, vary a great deal during a day. I will look at all your links .

I will get some Adapt, I have Seriphos as my levels mirror yours, high at night, low in day.

Do you take DHEA all the time or just for a month or two ? And I have some hydrocortisone coming, do you take that as well as DHEA and again, long term or short term.

You really have been most helpful and I cant thank you enough.

Best wishes

Andrea

cc120 profile image
cc120 in reply to Daffers123

Hi Andrea/Daffers123 - my posting was a compilation of others posts, I would have loved to have given you a definitive answer, but have been reading about adrenal exhaustion supplementation for awhile and many things are suggested. I started with Nutri Adrenal Extra as recommended by a specialist, then accompanied with Nutri Thyroid. Many on here stated that Nutri thyroid hadn't helped them at all, and I found that over 1 x day Nutri Adrenal Extra, had me waking early am with anxiety. So increased levels of B12, B complex, folate, iron, Vit d3, Vit C, then started NDT (Naturethroid). I started Seriphos when going through a particularly stressful time, wired like a spring, but more than half a capsule a day had me feeling very sluggish. I have also started taking a quarter to half a teaspoon of sea salt in a mug of water 2 or 3 times a day. Like you I am low cortisol in the day and high in the evening and night. Haven't tried DHEA or hydrocortisone but have just ordered DHEA.

Did try Circadian T3 Method (CT3M or T3CM) for Adrenals–a great way to treat your low cortisol ( stopthethyroidmadness.com/t... )! By taking NDT a couple of hours before getting up, but difficult to take at that time.

Following might be of interest:

capitaldistrictvitalitycent... : points out that

'People with hypoglycemia tend to have difficulty making the right amount of cortisol at the right times of the day or night. They also have blood sugar levels that spike and then crash throughout the day. If they go too long without eating they experience lightheadedness, irritability, shakiness, a spacey feeling, and other symptoms that signify the brain is not getting enough glucose. In these cases, not only does blood sugar drop too low during the night, but the adrenal glands don’t produce enough cortisol to keep the brain fueled. In response, the body sounds the emergency alarm by releasing “fight-or-flight” hormones. These stress hormones raise blood sugar back to a safer level. Unfortunately, they also raise stress, which can cause anxiety or panic in the middle of the night. Hence the waking up at 3 a.m. and not being able to fall back asleep.'

And canaryclub.org/cortisol-str...

‘Sleep disturbances: Cortisol production follows a curve from highest levels around 8am, dropping throughout the day until the lowest levels are reached about 11pm. In early stages of adrenal fatigue the body compensates with high night time cortisol. In this case the person finds it difficult to relax from the stress of the day and has trouble going to sleep. High night-time cortisol results in reduced REM sleep which is neither restful nor restorative. This can lead to depression and reduced energy levels the next day. In later stages of adrenal fatigue, the body may produce adrenaline ("fight or flight" hormone) in an attempt to compensate for low cortisol. ‘

healthunlocked.com/thyroidu...

‘I think the best way of keeping your blood sugar level is to eat a low carb high fat diet or a paleo diet with reduced carbohydrates. I have been able to come off hydrocortisone and have lost almost 9kg in 9 weeks. I follow dietdoctor.com/

SO HIGH NIGHT CORTISOL CAN WAKE YOU UP BUT SO CAN LOW CORTISOL:

Insomnia

You cannot fall asleep due to high Cortisol or you cannot stay asleep due to low Cortisol. High Cortisol at night is an indication of a dysregualted communication between the Hypathalmus and the Adrenals.

Cortisol should be low at night, and it is very stimulating. This is part of why some people are ”night owls”. Low Cortisol causes us to wake up in the middle of the night. W

e use Cortisol while sleeping to convert stored sugar (glycogen) to usable sugar (glucose). Our brains need Cortisol while we sleep, because the brain never sleeps. If we run out of Cortisol, we can use alternative Adrenal hormones like Epinephrine/Adrenaline. The problem is the alternative hormones are very stimulating, and they wake us up, or cause light sleep that is not as restful as deep sleep states. This is why some people wake up and feel like they did not get a good nights sleep.

cc120 profile image
cc120

draxe.com/7-adaptogen-herbs...

7 Adaptogen Herbs to Lower Cortisol

myboys12 profile image
myboys12

It's a pity your endo hasn't read the many articles about adrenal exhaustion going hand in hand with thyroid problems.I have ME/CFS for two years.A few months ago I went to an endo who is really good and believes in treating symptoms rather than relying solely on test results and their ranges.By sending my blood work to France for a broad range of tests we discovered that I had an RT3problem,giving symptoms of hypothyroidism but just about falling within"normal range" for Ireland..he started me on T3only immediately with 300mg daily of CQ10 as well.I began to improve.A couple of months later I began to feel very mentally fatigued,as if I just couldn't face any kind of stress,no matter how slight,any more.I went back to endo.and he showed me my DHEA results...low morning cortisol and low DHEA.My thyroid meds were giving my body energy but my adrenal glands weren't getting a chance to heal.He put me on DHEA tablets and two weeks later the improvement has been remarkable.Now I sleep at night,can cope with a certain amount during the day and generally feel like I,m improving.I do rest a lot,take short amounts of exercise and try to eat a high protein,high fibre diet and quit caffeine...all part of helping adrenal glands to heal.He said if I was to rest alone I,d be a couple of years recovering.The DHEA is only for a couple of months so as not to upset my hormones too much.From what I read you can buy DHEA over the counter in the U.S..If he's reasonable he,ll at least give it a try,if not II,d contact a support organization,that's how I found my endo.Good luck.

Daffers123 profile image
Daffers123 in reply to myboys12

Hello and thank you for your information and advice. How on EARTH did you find such a wonderful endo - what sort of support organisation did you contact ? I would give an ything for someone to send my blood results to France and get to the bottom of all this. Please send me any info you can which would get me in touch with the right sort of endo.

I was very interested in your T3 experience and your subsequent feelings of mental fatigue and not being able to face any stress. That is me . I have actually got some DHEA tablets which I have been too nervous to take, but I will start them tomorrow and see how I get on. I could try it for a couple of months as you say.

Agree with the diet, and the caffein etc, and gentle exercise all of which I am trying to do and am taking loads of vits and supps as per advice on here .

Please let me know how you get on and I am glad you are feeling much better after 2 years!

Andrea

myboys12 profile image
myboys12 in reply to Daffers123

I contacted the ME/CFS association in Ireland after I had started collapsing on a regular basis,my husband was a nervous wreck!They gave me Professor Austin Darragh,s name....I already knew who he was,he,s very well known over here and I would imagine in the UK also.He sits on a world committee investigating causes of ME.But he,s 87 now and I assumed retired,I was told he still sees some patients privately,wait for it,5miles from where I live.He saw me 48 hrs after calling him,guessed the problem within 20 mins,but had to get me to go to private hospital in Dublin to have bloods done and sent away.As far as I know only the RT3 had to go to France as it isn't tested here.Mostly doctors won't do tests because of costs.Despite the fact that all docs in this country laud the great professor very few of them are willing to follow suit,even my own GP who is very good overall..She was shocked when she saw my results...was even more shocked when I had normal BP and pulse for first time ever,they were always low.Another example is my son who has pernicious anaemia,inherited from his father.He,s only 20.Gets B12shots every 3months,before he came back from college for the summer I told him to get the college nurse to do a B12 count.It came back completely normal according to her,but I had done my homework and knew that it should be much better considering he was getting injections.Spoke to my GP,she agreed,gave him 6wk course of injectionsbut then I requested that he get his shots monthly as he didn't seem to absorb it very well.She agreed,mostly because she knows me well.Everything is money,and not wanting to look beyond the figures.I have done so much research on my condition and my son,s that question everything.My endo complimented me on this.I take DHEA 25mg in the morning..has definitely helped.If you contact ME/CFS association they will have lots of information and names,as thyroid and adrenal glands are big part of ME.It's hateful though sometimes,feeling so lousy.But I have a good friend in very advanced cancer and that puts a lot in perspective for me.Good luck with your efforts and give the DHEA a go.

Daffers123 profile image
Daffers123 in reply to myboys12

Thank you so much for the information. You are very well informed and seem to understand it so well! What an amazing coincidence that the Prof was near to you and able to sort you out.How on earth can we replace people like him ?

I am going to start DHEA tomorrow morning. and I will definitely contact the ME/CFS assoc and see if I can find someone like your Prof.

Our poor husbands, having to cope with all this....

Yes, knowing people who are worse off than us does put it into perspective. My friend had breast cancer a year aago and now its back in the liver and poss the thyroid so I try to bear that in mind.

Thanks again

Andrea

myboys12 profile image
myboys12 in reply to Daffers123

Let me know if you have any success with ME association,and how DHEA goes.I've been symptomatic of hypothyroidism nearly all my life,andI,m nearly 50,but my results were always just within range,by one decimal point sometimes,therefore I was normal.Doctors don't even give you the breakdown of results.Being an ex- teacher the only analogy I can make is giving a group of children a test:one gets 4/10(bare pass mark..obviously needs support),another gets 9/10...are we meant to treat them both the same for class work????Not if you're a good teacher,you get the child with 4/10 the extra help they need.Same thing with our health.Unfortunately some of our doctors think they are all knowing,we know our bodies best..educate yourself and challenge them.Take care,Maria

Daffers123 profile image
Daffers123 in reply to myboys12

Hi Maria

Have jsut read your posts again as am going to try your Professors method and hope you dont mind me asking just a couple more questions.

ARe you now being treated for hypo using T3 only and, if so, did you have any trouble with the T3. I have had a lot of probs (heart palps, drastic weight loss, shakiness, anxiety). SOme say thats an adrenal problem and others think it might be iron.

Were you, in fact hypothyroid all along and not ME or CFS at all ?

I have had a RT3 test done By Blue Horizon labs and it was 20 (range 9-35) but as I understand it, the ratio of RT3 to FT3 is important and my FT3 was very low. So it looks like I had a conversion problem. I have just been on T3 only for 8 weeks but really it made me so unwell and I couldnt increase my dose at all so am now back on T3/T4 combination. And Im scared that I wont convert again, and will get overmedicated etc. etc.

I am going to search the ME CFS as you say to try and find someone who understands. I did see Dr Durrant-Peatfield a couple of years ago but its tricky to get to him, plus he is now nearly 80 so wont be working forever. Wish I could see your Prof.

thanks for your help and will keep in touch. Glad the DHEA worked for you, and am starting it myself.

Best wishes

Andrea

myboys12 profile image
myboys12 in reply to Daffers123

Yes,I,m being treated as hypo with T3 only,but its not regular hypo from what I gather,all of my results were bare minimum which meant the problem was coming from pituitary gland,which controls adrenal glands.Yes's it's the ratio which is important,my RT3 was 14.5 but ratio worked out at 2.3,it should be between 20 and 30.He started me on 2.5mcg and increased it every 7 days by same until I got to 20mcg.Had very slight palpitations and anxiety at start but he told me to take Xanax for a day or two to see if my body would adjust.also took it before getting up in morning,generally stayed in bed resting for another hour,that might have been helpful.He did try to get it up to 40mcg but palpitations,anxiety and sweating was really bad so came back to 20mcg.He did say that some people need to take DHEA first before system will tolerate T3..My ratio was so low that he wanted to try to give me some energy first because I kept collapsing.Then a few weeks ago I felt like I had hit a wall mentally and disimproved again.At this point he introduced DHEA,now my thyroid was ahead of my adrenals and they couldn't keep up.Evidently they both need to be supported together,from what I read,ideally adrenal meds before thyroid..I was just other way around.I still have ME,they have discovered that over 50%of ME is thyroid /adrenal related.Body has been in overdrive or poor diet,stress for some time,running on cortisol.Only takes a small trigger then to send adrenal glands into meltdown flu,and they in turn screw up thyroid.I know iron levels are important,not a problem here as I had had gastric ulcer few months before and needed blood and iron infusion.Hope this helps

gabkad profile image
gabkad

Daffers, for the past week I've been taking 2 mg prednisone mostly for my pain. But since my cortisol is a whiskers thickness above Addisons, I think I'll just keep going for now. It's not bad. 10 mg hydrocortisone equivalent.

I don't know what my cortisol is like during the day but it's low in the morning. So I'm giving it a gentle boost. No puffiness or appetite going crazy. I was thinking of checking blood glucose, but for the past three days I've actually eaten a lot less than usual. If I take 5 mg twice per day, I puff up and stuff my face and can't sleep. If I take 5 mg, I get puffy. Seems at 2 mg nothing adverse appears to be happening.

Supposedly at this dose it won't suppress the hypothalamic pituitary axis so ACTH should not go down. If I stop for a few days or a week, the blood tests ought to be representative of the reality of lousy cortisol, just like usual.

Daffers123 profile image
Daffers123 in reply to gabkad

Hi Gabi

What pain are you suffering - joint and muscles ? How do you know your morning cortisol is low ? Can you get saliva tests in Canada ? I am trying to learn about all this as my daily cortisol is not overall low, but the peaks and troughs are extreme and I feel rubbish and my thyroid meds dont seem to work. Am getting ACTH test this week and will prob do adrenal saliva test again too.

I have ordered some hydro cortisone and think might try it when it finally arrives although the 2 posts from MyBoys12 have now made me think perhaps DHEA might help me. I think probably I shouldnt take both ?

Dosing sounds very sensitive - did you just trial and error yours ? Is the cortisol stopping you eating so much.

I read the Tired Thyroid book you recommended and thought it talked a lot of sense. I think I am someone who needs T4 boosted (as I was told my thyroid was able to convert some to T3) and perhpas a little T3 but I hate the way T3 makes me feel - anxious, fluttery heart etc.

Are you having a blood test soon ?

A

gabkad profile image
gabkad in reply to Daffers123

I've had cortisol tested only in the morning a few times and it was pathetic. But ACTH is normal and overall cortisol output (24 hour urine test) is normal. So obviously I must be either producing the same amount all day long or there's a rise someplace. Next time I get blood taken (in December) I am going to do my usually subversive thing and add cortisol to the lab requisition except I'll get my blood taken around 3 p.m.

For the past week I've been taking 2 mg prednisone first thing in the morning. It does not appear to cause puffiness or increase appetite. In fact, oddly enough, if anything, my appetite is lower than it was before.

If I go up to 5 mg prednisone, after three days I look in the mirror and think, 'hey, you look 10 years younger'. But after another 2 days I look like Puffy McPuff. And my appetite goes bonkers.

I have all sorts of pain. But only in my back. Arthritic, muscle spasm and neuropathic (but this seems to have chilled out). I took low dose naltrexone last year for about 8 months. That actually helped with the neuropathic pain but of course does nothing for arthritic or myofascial. The last straw this week was when I was almost unable to wipe my bum... I thought, OMG, this is like those old people in nursing homes... So, yes, 2 mg prednisone and the heating pad all night long. It's a matter of selfcare and personal dignity.

I took the heating pad out of the hammock a few weeks ago and lived to regret it.

Daffers123 profile image
Daffers123 in reply to gabkad

You did make me laugh - Puffy McPuffy! I realised that I havent felt like laughing in quite a long time. And as for the old peoples home, and the bum wiping, I have to say 'I hope I die before I get old' is probably not as daft as it sounds when youre 20!

Sorry to hear about all your pain, backs seem so tricky and they never seem to go away (from what friend's tell me) completely. So far mine is OK but I'm sure something else will get me before too long.

I am interested in HC and also LDN - have read a bit about them. I am n ot sure whether a low dose of HC would be good for me, or bad. I get confused. I am going to try DHEA which I already have, and have ordered some HC which is on its way.

Why can t you do the saliva test to find out when your cortisol is rising and dipping ?

A

gabkad profile image
gabkad in reply to Daffers123

One of my friends just managed to find a physician who is actually checking everything out. Her GP refused to even test vitamin D......said "Everyone is low." Isn't that just the most amazingly stupid thing to say? And here we pay for the test so it's not like the government will go bankrupt.

Her DHEA came back high and cortisol low. So I'm not sure what is to be gained by taking DHEA if this is what happens. The doctor wants her to take NDT! Not T4. Said this will not work well for her. Imagine that! Good thing I was sitting down when she was telling me all this. But even on NDT the doctor told her she'll feel worse before she starts feeling better. Also she is using progesterone and estrogen. Her vitamin D was low. She had some thyroid antibodies but not much. I've been telling her for a couple of years now to get properly checked out because one day she'll just entirely burn out and never recover. Unfortunately it can happen.

I did a lot of reading on LDN before giving it a try. I was taking 4.5 mg at night. Right now I'm considering taking it again because the back is occasionally burning. That's neuropathic. Some people report that it interferes with sleep. Didn't notice.

HC has a very short 'life' so prednisone or prednisolone are better options. In my case, I know the cortisol is low in the a.m. I'll find out what it's like later in the day. I don't want to get involved with the salivary testing. There is a possibility that the cortisol doesn't go up and down. I've read that with someone who has experienced a great deal of trauma, this may be the case.

Daffers123 profile image
Daffers123

Hi again

I was licking my lips at the food you and Clutter were talking about!

Your friend was very clever to find the physician we all dream about - is it near enough for you t o see him too ? Does NDT always make people feel worse before better ? Have you tried it ?

I have a few antibodies - just less than the marker last check in March. Things for me have gone downhill since then and I was hoping boosting the adrenals would help me tolerate the meds. Thing is, the endo seems to agree with you on the saliva thing. He is only interested in blood test cortisol. Am considering more tests but whether blood or urine, don't know. And then its getting someone to pay attention to the results.........................

I am wondering about iron too, as someone said my ferritin was too high and going into storage (whatever that means) so now I am not sure whether to follow that up or not. Its so confusing, I sometimes think I should just take the anti depressants and get on with it and just hope the Levo will settle down.

I dont know what to make of DHEA, I havent started yet, am a bit nervous as dont want to make things worse.

How is your pain these days ? Are you back on the LDN ? Is it something you can buy ?

I have bought some hydrocortisone (sent for them before I read your post) and they have come via Intl Pharmacy from India, not boxed but in sealed bubbles, but they are 20 mcgs per pill. Not sure whether thats what I need either, can I buy Prednisolone which sounds better ?

Hope your chowder comes out great

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