Hi, I am thinking of doing this for a while now but somehow never had a courage. I think that I finally made up my mind to do it. But I would like to hear first from people who are doing the same. Any info would be useful. Thanks.
Anyone here self-medicating with Hydrocortisone... - Thyroid UK
Anyone here self-medicating with Hydrocortisone? Would like to hear about your experiences.
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How have you arrived at the conclusion you need hydrocortisone? If you haven't had tests done, I'd certainly advise getting them done first.
You haven't given any history - what's your story? Are you hypothyroid? Diagnosed? Treated?
Questions questions 
in reply to Jazzw
I am hypothyroid, on T4/T3. Already self-medicating with T3. I have low blood cortisol but still within reference range so my doctor refused to treat me for this same as he refused to prescribe T3. But with T3 it was easy, HC is a bit more complicated to start with. I did cortisol saliva test on my own and it was low. My doctor didn't want to recognize this test as valid.
You haven't said why you want to self med with hydrocortisone. It's not something to do without a lot of careful research. If (and this is only a guess as you haven't said so), you are talking about using it for adrenal issues, then you could take a look at the STTM site, as they seem to advocate this a lot. stopthethyroidmadness.com/a...
If you really want to hear about other people's experiences, you're probably best going elsewhere as this forum's main focus is on thyroid, not adrenals. I don't know, but there's bound to be a forum or two dedicated to this subject somewhere. Maybe there are some on FB.
in reply to
My only comment on this for you is to be careful.
My mother was medicated with hydrocortisone steroids for over twenty years when she was alive and was regularly checked and monitored at hospital.I think from memory that dosage was very carefully and minutely adjusted according to need.
in reply to
Thank you. I want so be careful and I know that taking HC is not an easy thing to do. Still I have low cortisol and besides being hypothyroid I am dealing with adrenal fatigue which I can't treat with circadian T3 method or supplements and creams. Non of these things worked. And I don't have any support or understanding from my doctor 
in reply to
Gingerbread you sound very unfriendly. I am hypothyroid, what would I be doing here if I am not? But I have other issues as well. Telling me to go to another forum to search for answers is really not nice not only to me but to this forum as well.
in reply to
I have not said you don't have hypothyroidism. You asked about self medicating with HC which is not a treatment for hypothyroidism. So I gave you a link to where you can read up on treating adrenals and suggested you find a forum that specialises in use of HC. Not sure why you think that's unfriendly.
UrsaP in reply to
Low adrenals are connected to thyroid. I am hypothyroid, and now, after 30+ years of fighting, am on t3 only. Low adrenals means poor uptake of meds. Adrenals need to be sorted or won't get thyroid on track. I have seen DR Peatfield twice, a few years ago and again this last week, and again it is my adrenals which are causing me problems. Hence I've been showing as slightly overmedicated, though feeling depleted. I need to up my adrenal supplements. I too did the adrenal tests, 6 years ago - result was 'Adrenal Fatigue' Dr will not acknowledge this as a health issue...but believe me, as someone who has endured it on more than one occasion, it sure is! I was so low I took myself to Dr Peatfield, and will be eternally grateful to him. I take Nutri Adrenal Extra, Vit C and Co-Q10, when I can find it reasonably priced. And it seems to work for me, but I would highly recommend you get fully checked out first. If you can get to see Dr Peatfield he is worth every penny a million times over! I also took my son to Dr Peatfield this last week, he was obviously struggling too, his blood showing slightly raised t4, and has been for some time. He too is presenting clinically, with obvious adrenal deficiency, why his own Dr cannot see it?? I'm hopeful that he too will soon be showing signs of improving health. I'm with you, I think this forum has to include all issues relating to thyroid or what is the point?
in reply to UrsaP
Thank you. Yes, hypothyroidism is connected to so many other conditions, they can't be looked at separately. That's what most doctors do and that's why we are not properly treated. At least here people should understand that. I can't join the different forum for every single problem I have since all those problems are showing my whole picture together and can't be understood if someone only considers just one of them. Was it hard to make the appointment at Dr Peatfield? Are there waiting list or something? I would definitely like to visit him, everyone is so satisfied with his work. I am so sorry to hear about your son having problems as well, I hope he will get better with proper treatment.
UrsaP in reply to
Yes, you would think that people on here would understand! And that the main problem we all seem to have is Dr's treating symptoms and not looking at the bigger, connected picture. Getting an appointment with Dr Peatfield was just a phone call - you can call for an appointment on 01883 623125 Office hours are Mon and Wed11am -5pm, Tue and Thurs - 9am - 1pm. You can leave a message on the answer machine they will get back to you. But avoid ringing Fri as I think this is when he does his follow up telephone appointments. I booked just before Christmas and got in this last week - they were closed over Christmas. So not too long a wait at the minute. Well worth the 2 hr drive! A lovely man and a lovely team. Cannot recommend him highly enough. I wish I'd known about him to go to him 30 years ago! Wish I'd taken my son sooner too - he is now 2 years behind with his studies due to illness that Gp's ignore! I have every faith that Dr Peatfield has given him the reason for his illness and the means/knowledge to sort it out for himself, as he did with me 7 years ago. I had lost my way recently - lots of stress in life and couldn't see the wood for the trees, but this last week he had put me back on track too. We were both feeling a tad better just for having seen DR P. A cortisol boost from just having someone listen, take seriously and understand! Dr P currently charges c£180 for an hour and a half or so consultation, worth every penny, thorough - will ask you for recent test results and medical history - and ask you to keep Basal Temp for a while before seeing him - this can be very telling. Worth doing it anyway - a good gauge of adrenal and thyroid health. If he feels further tests are necessary he will suggest where they can be reputably done, but will incur further costs - I had adrenal and candida testing done 7 years ago. He didn't think it was worth my son doing these tests as he was presenting so clinically obviously with inadequate adrenal function. He won't 'rip you off'.
I hope you get sorted soon, it is often just a case of getting the right advice and balancing meds and supplements. Try not to let it get you too down. Hard, I know!
in reply to UrsaP
Thank you so much UPower. So it is not hard to make appointment with him at all. I always thought that I would be waiting for weeks or months because he is so much wanted. I'll gather all my results as you suggested, it's always better to go well prepared. I like doctors that listen to you, hardly ever met anyone like that. And as you said, they are always treating only symptoms but this is not helpful without the whole picture. So much is written about the need for holistic approach in medicine, but hardly anyone does it in practice. If all doctors would use this approach we would be so much healthier and happier.
UrsaP in reply to
Very true! I wouldn't be surprised if the NHS 'crisis' is due to all this treat by elimination - i.e.try this/try that approach, issuing tablets and creams that do not work until the poor patient is either ten times worse or dead! - How many of us have bottles and tubes lying around the house that have gone to waste! If they added 5 mins to each appointment and did the 'clinical' observations, and listen, and think about 'connected' problems, they might be able to get it right, first time, more often. Meaning less return visits and more time for other patients. I feel they way they work these days is all false economies! I also wonder about the money spent on the system that they were so 'proud' of a few years ago -we were led to believe that we would be able to walk into any Dr's or Hosp and they could bring your details/history up and treat you.... Well that seems to have been swept under the carpet, half the information seems to go missing or never make it onto the system! The next great financial scandal. Another rant over -
Regarding Appointments with Dr P, I know I waited months for an appointment with him, 7 years ago, but I was looking to go to one of his 'satellite' clinics at the time. This time I went to Crawley as he is not doing his other clinics now. Like us all, he is not as young as he used to be! God Bless him. He can still run rings round these other younger, blinkered, GP's!
in reply to UrsaP
Yes, it's such a waste of money and resources, not treating people properly so that they have to come back over and over again. But I guess that's what pharmaceutical companies want - for us to be constantly ill so that they can sell more and more of their drugs for this and that. They don't have profits if we solve our problem, since on this way we would maybe need just one to two medications instead of who knows how many for every single symptom we get. This is so unfair, for them we are just lab mice and they are making money from our misery.
I was treated with HC by a doctor, and I really, really would not recommend self-treating with it. It's not something to play around with. And, the only advise I would give you, without knowing a lot more about you is : don't.
Thanks for replying Coleyfish. Honestly, many of us here know how miserable it is not to get the help we need from our doctors.
So... I'm with Grey Goose. Let's have a look at your most recent blood tests and see if we can spot something.
What are your levels for
Ferritin
B12
Vit D
What are your latest thyroid blood test results? How much T3 and T4 are you taking?
We're very happy to try to help if we can.
in reply to Jazzw
Thanks. I'll gather my results and post them.
Hydrocortisone is powerful. Most people don't need it. I've had a love/hate relationship, and I absolutely need it and can't function without it.
It is useful to know what your pattern is. Are you sleeping? Do you wake up and can't go to sleep at 2-5am? Can't drag yourself out of bed in the morning, or are you fine when you wake and then crash?
Depending on the answers, you may need different tools ...
First, you should eat a lower carbohydrate diet, sleep and exercise enough, and avoid undue stress. But coffee if you can.
You could try a herbal adrenal support, or a glandular and herbal combo. You can try Interplexus Seriphos to regulate your adrenal hormone timing.
If all of the above aren't enough, then your would try hydrocortisone. A replacement dose is about 30mg a day. I take it as 5mg pills, and usually divide it into 3 dose, then at 8am, 1030am and 2pm. Best to takeout before you crash, not after .
I find if I take too much, I rapidly gain weight around my middle. So, if that happens, I cut back.
And, need to fix adrenals before thyroid can improve. Also check out pregnenolone, progesterone, DHEA, testosterone, and estrogen, which may compound the situation.
And make sure you have enough B5, vitamin C, selenium. Iodine, zinc, and Bs .
Hydrocortisone also helps your immune system.
Hope this helps ...
in reply to Learner1
Thank you so much, those I really interesting questions if you can figure our something from my answers is would be great. I hardly wake up in the morning. Getting up at any time before 10 am is simply a torture for me. When I get up at 7 for example I hardly drag myself to the bathroom to have a shower, I am so tired and in pain through the whole day. It was like this since I was a child, I was also constantly sick during my schooling because I had to wake up early and I felt exhausted. One of the things I hate the most is wake up alarm. I don't work at the moment so now I usually sleep until 10 am but I don't feel rested when I wake up just slightly less exhausted... I go to sleep quite late in the evening, not because I am not tired but simply because I can't force myself to get up from my couch and go to brush my teeth and change into my pj's. So I often fell asleep on the sofa watching telly. I wake up sometimes during the night and then stay awake for hours. I don't drink coffee. I take vitamins and minerals you mentioned for years. I tried diets in which I was taking minimum of carbohydrates but it didn't help. Especially when I get up very early in the morning I crave carbohydrates. I am not overweight but I do have water retention. I tried to exercise and do yoga during periods when I felt a bit better but lately I just can't do it...
Learner1 in reply to
You are likely a good candidate for HC.
Has your pituitary been checked? Sex hormones, like DHEA? 24 hour saliva adrenal cortisol test? Or better yet, a DUTCH test? (Dried urine test of comprehensive hormones)
I take 4 caps of Vital Nutrients Adrenal Support daily, which is about the most robust on the market.
You might that. then take 10mg on waking (the time you want to wake up, not the time you usually do) then 10 more 3-4 hrs later (when you feel like you're starting to crash) and then again 3 hrs later, best 6-8 hrs before you want to go to bed.
I'm not a doctor, this is just my best guess.
And...er, what's sapping your adrenals so badly? Fast living, major trauma, cancer treatment? 😉 Or do you perhaps have a chronic infection or infections? Lyme, Bartonella, Epstein Barr, cytomegalovirus, c. or m. pneumoniae, toxoplasmosis , syphilis, Cocksackie, candida etc.?
Or some sort of toxicity?
Finding the root cause would be mighty helpful. Much as I depend on HC myself, it's not a way to live, long term...
Best of luck on your journey...
in reply to Learner1
Thank you so much. My immune system is a disaster, just yesterday afternoon I suddenly came down with fever and high temperature (that's why I was not able to reply earlier). I have chronic infection with cytomegalovirus, mycoplasma pneumoniae and chlamydia pneumoniae. I don't know since when, they found them some 9 years ago I wasn't tested on them before that. While I was working I had a very stressful job and in the same time my private life was very stressful. I haven't been working for several years now and I didn't have that much stress in recent years but still it didn't make any difference. About pituitary my ACTH is low, I haven't done sex hormones in years, I think they were normal before same as DHEA but it was years ago. My morning and evening blood cortisol are always within reference range, that's why my doctor never wanted to consider that there is some problem with that and my symptoms don't interest him really. I did ordinary saliva cortisol test, never did 24 hours one. Cortisol there was low. I never heard of a DUTCH test, would be very grateful if you can explain how to do it and what can be seen from it. I have very high adrenaline and noradrenaline if this has something to do with all this. Once again thank you so much for all your help x
Learner1 in reply to
I am fighting the same infections, plus 2 more, do we have a lot in common.
HC will support immune function. I also take Designs for Health Immunotone Plus and 4mg of vitamin C a day.
Have you looked it's hyperbaric oxygen therapy? It seems to be more readily available in the UK. Try it if you can, it could be a game changer... like 3-4x a week.
Cpn is a nasty bug. I've been battling it for over a year. It's caused me to be severely deficient in B6 - I need 400x the normal values of P5P. And severely deficient in B12, around 10mg daily. Dr. Stratton at Vanderbilt has articles on this.
I've been on rifampicin and azithromycin lately, following Dr. Montoya's study at Stanford. And we just added Samento, Banderol, and Burbur tinctures, as in the Cowfen protocol.
For everything else I've been doing high dose vitamin C IVs and IV artesunate, as well as artemesinin in oral or suppository form. And NT Factor to repair damaged mitochondrial membranes.
Plus being on a good quality and comprehensive supplement program. Valcyte would be a drug to consider.
My immune system is suppressed after cancer treatment, so maybe you're not as sick as I am.
My doctor is keeping my thyroid running as fast as practical. And in HC.
Google DUTCH test or dried urine test of comprehensive hormones. They're in Portland, Oregon. The test format is very easy and easy to mail. Fits in a business envelope. It's 4 little matchbooks where you pee on the special paper, let dry, and mail back.
Best of luck, and PM me if you have specific questions.
in reply to Learner1
Thank you so much Learner1, we really do have a lot in common, but your cancer treatment is making everything even more difficult and I am very sorry to hear that you had to go through this as well. I do have a lot of questions but I don't want to bother you too much. Can I just ask are your infections still active in IgM or they are in IgG now?
Learner1 in reply to
You're welcome! I'm happy to help and help us hard to come by when your problems are complex...
Good question on the immunogobulins. IgM is for acute infections. Like the first time you get it and your body mounts an initial defense.
My IgG numbers are high and bouncing up and down as we battle the bugs. And my IgA numbers go from 0 to moderate. This fits with chronic infections. Some doctors won't acknowledge this, though, making getting treatment impossible. But it's true. PCR tests can be helpful, too.
In my case, my labs and symptoms also indicate the infection. Severe B6 & B12 deficiency. High serum ferritin and odd iron study numbers. Low hematocrit sed rate, cortisol, progesterone, free T3, aldosterone, tryptase, dopamine and amino acids. Lymphs that move up.
These are subtle, but important clues, and a not too clever doctor wouldn't connect the dots.
Responding to treatment is another good clue.
Good luck and PM me if you need something specific.
in reply to Learner1
Thank you. I also have infections high in IgG but negative, or simply positive but not elevated in IgM. And yes this is making it difficult. Doctors think that you are healthy in that case
Learner1 in reply to
Yes, I've read carefully through all the many opinions out there...
From what I've concluded, IgG that increases significantly, even without high IgM or IgA, is evidence of a chronic infection, especially if accompanied by other symptoms. My doc thinks so, too...
Wonder what the titers look like for herpes simplex it shingles????
Best wishes...
in reply to Learner1
I completely agree. If IgG is just what was left from some infection we had long time ago why is it rising sometimes, it doesn't make any sense.
Learner1 in reply to
My doc has been tracking several infections over 18 months, and my IgG have moved up and down quite dramatically, while IgM has been moving some. My symptoms come and go, too.
Some experts say they're there, but the immune system doesn't behave the same way with a simmering chronic infection as with a new, acute infection. Others claim the infection is gone, but the immune system is misbehaving.
I have enough evidence of abnormalities on labs that lead my doctor and me to believe that the bills ARE there and actively causing damage.
Plus, I have a suppressed immune system, so they're probably not registering as high as in a normal person, and I'm not able go fight them off as well, either... hence the chronic status.
From what I've seen, there are some egos involved with theses experts... I don't care who thinks they're right I just want to get well.
If you have a skeptical doctor I've found printing and bringing a medical journal article that makes your point is worth a lot of talking and arm waving...I just hand them my article, and say, her, the research says... wonder how this applies to me?
😉
I knew I needed hc from repeated cortisol saliva tests. My synachthen test was 'borderline low 'normal' but endo refused hc. I had to make the very difficult choice of staying bed bound/housebound with a severely reduced quality of life or muster my courage and self medicate with hc. I did the latter. A year after that I managed persuade gp to take over the prescription and then followed the mainstream monitoring through the hospital. This was 7 years ago now, and I am doing very well. But the decision is not to be taken lightly. Do your research thoroughly. Chances are, if you need it you will need it for life. I tried everything for 3 years to avoid taking it....for me, I was 100% satisfied that it was my only option if I wanted to live my life and look after my children. I now take 30mg a day, as well as t3. Hope that is helpful.
in reply to katey
Yes, thing that taking HC should be for life frightens me a bit. I mean I will be on thyroid medications my whole life but somehow this is different. HC is (at least how I understand it) more serious and side effects can he more harsh but if this is the only way out of this dreadful condition I am in now I am willing to take the risk.
You need to check your potassium levels before starting Hydrocortisone. I believe they need to be around 4.2. It's also important to get 2 weekly potassium blood tests to keep an eye on it whilst medicating. I know I was unable to take it as my potassium levels were 3.8 and my GP would not prescribe slow release potassium or hydrocortisone! I now take Adrenal Cortex to support my adrenals. However, I do stress dose with hydrocortisone cream when I have a stressful situation.
in reply to StarFlower2
I didn't know that potassium is important. Thank you for that info. Mine is usually more than 4.2 but sometimes it goes lower. I don't think that it is very stable, it goes up and down.
Ps. I can give you a link to a site which might help you monitor your self medication for adrenal issues. Message me if you are interested.
in reply to StarFlower2
Yes, I am very much interested. Please send me PM. Thank you so much.
Coleyfish,
I'm sorry you feel poorly. I'm also on t3-only and have lots of adrenal symptoms. I'm at the point of waiting for my cortisol profile and reading up about adrenals and HC supplementation. I posted some info on HC supplementation a couple of weeks ago:
healthunlocked.com/thyroidu...
Lynn-2 provided a good advice regarding potassium. People with adrenal insufficiency have difficulties keeping their electrolytes in balance. That's why adrenal cocktail is sometimes recommended. It contains Vit C, sodium and potassium. I definitely noticed an improvement in my sleep since I started taking 99mg daily (5% of RDA). Higher cortisol leads to lower potassium levels so you really need to watch your potassium if you decide to take HC.
The following website provides lots of useful info on adrenals: rt3-adrenals.org/
I highly recommend joining their yahoo support group. They seem very clued up on adrenal health and HC.
I hope it helps.
Take care
in reply to Kitten1978
Thank you. Yes I noticed that my electrolytes are not very well balanced. I'll look at the link you gave me. Thanks again.
You need a prescription for HC and it's not cheap. My pills cost £88 per pack and I need 2 a month, for life. And you need continual bone scans and bloods done. I wouldn't take the stuff unless my life depended on it, which mine does.
in reply to MaryFu
I can't get prescription for it. But you can get it online without prescription and it's not even that expensive.
MaryFu in reply to
Is it genuine though, unadulterated and safe? And how can you be tested regularly to make sure all your other hormones are in range? And how will you know what's the right dose for you? I wouldn't risk it.
Mistral in reply to
Hi again coleyfish missed this post. You are right you can get Hydrocortisone on line from reputable on-line pharmacy and you are right they are no where near as expensive as the £88 MaryFu pays. You can also get Prednisolone which is a corticosteroid with a Biological half-life: 2-3 hours which is also used for people suffering with Addison's Disease. Again this is very reasonably priced.
Hello coleyfish I have just received your details in my email inbox and read the replies below. My story is so similar to yours, I had taken Thyroxine for 14 years but didn't thrive, asked GP if they could try T3 as well - GP refused - getting worse and worse I asked for B12 test but they would not give full tests, but the one and only blood test they dained to give me showed subtle B12 deficiency, but was refused a trial of B12 injections. Eventually the GP stopped prescribing Thyroxine as either on it or off it I was in the dreaded "normal range" but becoming so unwell no strength, my body felt as if someone had taken a hammer to it, so tetchy, and just couldn't even go out, I literally was dragging myself around. I was backwards and forwards to the GP, and I think to get rid of me, said he would refer me to an endocrinologist - after two months no hospital letter - I eventually rang surgery to find out where my appointment was. Told to ring hospital myself only to be told there was no referral letter. Back to GP and apparently he and endocrinologist had decided I didn't warrant a referral but no one thought it polite to let me know! (I asked for a copy of the letter which they did give me). I now understand why after seeing the news today!. You can imagine my relationship with my GP is at rock bottom, my last meeting with another doctor in the Group ended with me crying bitterly and asking them why they rely only on blood tests that come back with "within normal range" and they do nothing when they have a patient sitting in front of them so ill. I was told categorically that they only go by the blood tests not the symptoms of the patient. So , I went down the route of private medical advice and private bloods and saliva tests. I was diagnosed with B12 deficiieny and the laboratory saliva test showed very very low cortisol levels, and was diagnosed with Addison's Disease. Hydrocortisone is not something you should take lightly without advice from a clinician, it does have side effects and dosage should be as low as possible because of this. Can I suggest you go on to the B12 Deficiency site as they are also interested in and give advice regarding Addison's Disease (Hypoadrenalism). It will take a few days to get a reply, but I am sure they will be able to guide you as to what you can do. Please note I now take a low dose of Hydrocortisone, Thyroxine, and B12 injections all having to be sourced and financed personally BUT I am lucky my health improvement has been amazing, almost instantaneous (I was given my life back after two years of crushing debility), BUT it looks as if I will be on all this medication for life. I am on a strict time regime, and being carefully monitored. I can understand how desperate you are if you are as poorly as I was. Whether we like it or not many many of us are being left to deteriorate, it is little wonder we are forced to take things into our own hands in order to have a reasonable quality of life, it is not a lot of ask for. Good luck and my heartfelt best wishes and hope that you get well soon. b12d.org/
in reply to Mistral
Thank you so much Mistral and thanks for the link as well. I decided to start with a low dose as soon as I can, since I have no doctor to guide me, it's comforting to know that there are groups who can help me in that. Thanks again x
I am taking HC that I get on my own. Currently on 20 mg in the morning. It was not very scary to start with it (at least in my case) and I really had great results. I can't see any harm in trying, start with the low dose and if it doesn't suit you just stop.
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