Feeling rough

Hi everyone, dont post on here much but read other posts, My problem is a bit different as my pituitary gland doesnt work so that means neither does my thyroid. I see the endo at the royal hosp in liverpool but everytime i go i say how the tiredness is becoming a bigger problem the older i get, they just note it down and thats that. Ive been to a new gp at my practice and he's given me a blood test form to see if anything shows up, I take levo 125mcg, hydrocortisone 20mg. vit d. I have just noticed my levo is 2 different brands too. Wondering does anyone else have similar problems Thanks xxx

39 Replies

  • Sorry to hear that, Saints!

    I was referred there, but left after severe incompetence: loosing all my notes, then several sets of blood tests, ignoring all my symptoms (despite a pituitary adenoma), & treating me like a retard. I gave up, & ordered NDT.

    Make sure you're on vitamin D3 (cholecalciferol) not D2 (ergocalciferol), & make sure your B12, etc, are ok.


  • Hi Mel, thanks for your reply. I too left the Royal and went to St Helens hosp which was even worse, i knew more than them. So had to go back to the royal as didnt know where else to turn. I am on D3 and the blood test form my GP gave me includes Vit B12. I find that when im at hosp and say about the tiredness they just redo a cortisol day curve which is rubbish as its only run over 8 hours, I dont know anyone whos day only lasts that long Thanks June

  • Hi saints, as Mel said below, people are not waiting around for better treatment and ordering their own hormone. I think it's fairly easy to do. What does your TSH read.....just 0 if they bother to take it? Do you have your FT3 and FT4 tested than? If your FT4 isn't in the upper range and same with FT3, perhaps that is the reason you aren't feeling well.

    I think others have mentioned they find a change of brands when they get their prescription. I think they advise to tell your pharmacist which you prefer.

    I guess hydrocortisone dosage is controversial. That looks like a rather high dose. Some doctors think a lower dose won't interfere with the gland's own output later.

  • As far as the cortisone is concerned half of it is lost in the gut so in effect saints is getting 10mg - a small dose. Also when a person stops using HC the glands continue working at the level they were at prior to starting HC. The glands are only damaged by long term overdosing of HC ie more than the body needs. Presumably what saints is getting is what their body isn't producing. If the body is not producing optimal levels of cortisol it needs to be supplemented in the same way that thyroid hormones must be supplemented when underproduced. We really shouldn't be afraid of using the correct dose of HC when our bodies don't produce enough. I have seen my sons' health and their lives turned around by correct dosing of HC - along with lots of other hormones and supplements.

  • That's not quite true. You only need to supplement cortisol in the way you supplement thyroid hormones if you have Addisson's. If it's just a case of adrenal fatigue, you just need to take HC in the morning - never after 1.0 pm - for a certain time, to give the adrenals a rest. And when you come off it, the adrenals should be rested and be back to producing a normal amount of hormone.

    The danger is people taking HC throughout the day for adrenal fatigue. That's when the adrenals pack up. It's not so much a question of the size of your dose in the morning. My doctor first put me on 60 - 40 first thing in the morning, and 20 at lunchtime. And he told me that I could increase my dose if I felt extra stress or was ill or something.

    But even that can be life-changing. I agree, we shouldn't be afraid of it, anymore than we should be afraid of any other hormone. Hormones are life.

  • What I meant was that one shouldn't be afraid to support low cortisol production as one would support low thyroid hormone production, by supplementing. I wasn't commenting on dosing regimes as they can differ quite markedly from person to person.

    I am not sure about the taking HC throughout the day being the cause of the adrenals packing up, because if they are producing at some level and one is supplementing at a level lower than full replacement then the glands must still be working or one would go in to full blown Addisons. We tend to deal with low thyroid by dosing throughout the day and that doesn't necessarily lead to the thyroid giving up.

    I think that there are low adrenal conditions which aren't Addisons, but don't improve after a 'rest' and for which people need lifelong supplementation with HC and other hormones produced by the adrenals, in order to be well and lead full lives. In past times these people were the ones who failed to thrive in childhood and led very narrow lives confined to home and bed - thank God times have changed.

    After having seen my youngest son really struggle with tiredness and extreme anxiety - missing two and a half years of school and having no social life at all to now being in college, busy with friends and a full varied social life - and this being due to 35mg of HC (plus other hormones) in two doses through the day I really feel that we grasp the moment. We have to live now not be controlled by what might/or might not happen in the future. The doctors at the cutting edge of hormone therapy say that the body reverts to where it was when one stops hormone supplementation as long as the amount is no more than is needed.

    These guys are the ones who have given both my sons the ability to choose what lives they want to live rather than the lives which were being forced upon them by low hormone levels.

    Sorry about the semi rant, we are all trying to help each other here, but I think it is so important to see hormone replacement as a good thing when it is replacement and especially HC. People are so afraid of it and this is due fully to huge doses being prescribed for years and years in the past not anything to do with physiologic doses which the body needs.


  • I think it's wonderful you found doctors who went the extra mile for your sons and sorry it took so long. I would think that the type that occurs in childhood may not be comparable to the type of adrenal failure as female adults with thyroid disease. I'm certain that adrenal failure could be the beginning of thyroid dysfunction in many cases.

    Some authorities say that 5 to 10 mgs. of hydrocortisone can be effective. I've also read that adrenal glands can be quick to heal. If you have to have Addison's for most GPs to notice adrenal problems......well, that has to change.

  • Well, I only know what my hormone specialist told me, and my own experience.

    But I Don't think we can compare the thyroid gland with the adrenals, they are entirely different creatures.

    But I agree, we shouldn't be afraid of hormones or hormone supplementation. :)

  • Hi,thanks for your reply, As i just said to someone else, my body doesnt produce any cortisol at all, I have to double my dose if im ill or very stressed. They recommend taking i take 10 in the morning, 5 at 12 ish and 5 at 3. all within an 8 hour slot, Ive tried different ways of taking it but doesnt even feel any different if i dont take any at all June x

  • If you Don't produce any cortisol at all, then surely that is Addisson's disease, isn't it? 20 sounds like a very small dose for that. I would suggest you do as much research as you can into cortisol, because that would make you feel very ill.

  • My condition is panhypopituitarism, Because this doesnt work neither do the other homrmones x

  • Oh dear! That sounds awful. I think it's time you changed your doctors! Yours Don't sound as if they're up to the mark!

  • Thank you finola, with my condition my body doesnt produce ant cortisol at all, does nt seem to do much at all LOL

  • Hi June,

    I wonder whether you are getting enough cortisol then. Maybe you are low or lacking in other adrenal hormones?

    I will pm you re the doctor we went to see.

  • this is why I asked to use the name brand Cortef and the name brand Synthroid, they cost more but I think the quality control is the best. I cannot take generic HC and many others cannot either. Many people switched to Cortef name brand and all bad symptoms stop. Mainly tired/wired, palpitations and anxiety. It's enough to make you wonder. Search for Clearly Alive Generic Hydrocortisone. I myself after reading this got on the phone to my pharmacy told them to give me the name brand instead. I got Cortef, and all those symptoms went away.

  • Hi marvalrus, since you take it, what do you think about the dose requirements and how long do you think you will have to be on it? (if you don't mind saying)

  • Hi Heloise, I definitely think the 5-10 mg dose is helpful. Because the idea is to off load the adrenals, not replace. There is a guy named Jeffries? maybe you've heard of him, he deals with adrenal and thyroid situations and he def thinks helping out the adrenals with some HC is a good thing. Replacement dose is not. Only if someone is Addison's should they ever take replacement dose.

    I am actually afraid for my doc to not renew my HC Rx. Only having one adrenal gland that still isn't optimal leaves me feeling a bit scared that my life is in the hands/decision of some doctor who thinks he's a King. Not sure how long I should take it, but always having some on hand could be a life saver.

  • Very interesting, Marval. I was actually hoping to obtain some hydrocortisone myself. I've been a night owl all my life and took licorice root and Ginseng when I was a lot younger. I felt more energetic.

    Since several kinds of stress are the basis for the adrenal problems IMHO, cortisone in small doses is really more suitable than valium or antidepressants. I only recently learned how valuable the adrenal glands are and had no idea that cholesterol is used for making other hormones.

    I have watched John Bergman's videos and think he is very knowledgeable regarding hormones as well as the nervous system. I've posted them quite often along with David Clark. I find it's easy to get the information but very difficult to find a doctor who will cooperate.

    I'm glad you found your answer and continue to improve.

  • Oh, I have a long way to go. As I was recovering from an adrenalectomy of the right gland, I was doing ok for a few months until my thyroid revolted and punished me with a good dose of Hashimoto's. I was so devastated. After all the years with this faulty adrenal gland, finally getting it removed, and recovering with good physical effects, I got this. SMH.... it was not good. So now I'm trying to figure out how to get out of this pickle. I'm being treated with Synthroid. I have a gut feeling though, because of my low cortisol output from one gland that I am going to need T3 soon enough.

    My cortisol used to be 11 or 12 at 11pm. Yes, I was a night owl, I've pretty much been on all my life too, but it does wear on the system, and high cortisol is probably worse than low. I've not adjusted to going to bed around 10:30 or 11, and I feel better with that.


  • I just recalled that I read when the adrenals are low, they struggle all day (stay low) and finally at night when you want it low, it's high. It did kind of make sense.

  • In my comment above I said I have not adjusted to going to bed around 10:30/11, but I meant to say I have adjusted! LOL, must been a subconscious slip!

    Even though I was Dx'd w/Sub-Clinical Cushings (which is high cortisol) not once was I ever high for the day. My 24 hour urine was always normal. But it was the 11pm test result and the fact I had no ACTH that finally, one endo said Houston, we have a problem! I do not regret having it removed. Physically I am better. And in a week or so I'll have the results of my diurnal 4 tube saliva. I'm so curious! In all those years, I never had that tested. Weird!

  • No ACTH really? Do you know a good chart on that?

    I'm looking at ZRT and really thinking about doing it, thanks. I see they have a dried blot spot for a vitamin D test although I was interested in the 2 ohd test. I wonder..

    Did you send it to Oregon?

  • Labcorp has a range of 7.2 - 63.3 for ACTH, last time I got tested on 9/24 it was 62.8 - so that says my pituitary is coaxing my adrenal, but my output it still low, that's why it's on the higher side.

    Yes, Oregon sounds familiar. Calcitriol? 1, 25 di-OH? Requst a Test dot com has that one. You just buy the test, they send you an email and you take that to any Lab Corp near you.

  • Oh, I found this chart on STTM. stopthethyroidmadness.com/s...

  • Great chart. Explains it all in pictures.

  • NY state is a bloody dictatorship, will not allow me to send for testing. This happens all the time. I think I had the same problem with Genova.

  • Really? How about Request a Test?

  • Why do you want HC? Believe me, it is not a "pick-me-up" at all. To me it is more like a necessary additive. It doesn't "do" anything for me. I actually feel better when I don't take it! But I feel I must compensate w/a touch of it. If not, I feel more weak. If your lips are white, you need some cortisol. If I were you, I'd try some licorice root tea if you think it helps you feel more energetic. HC is yucky. I hate it!

  • Hi, I will find my last blood test form and have a look, my hydrocortisone is according to them right as my body doesnt produce any , Thanks again x

  • Hi Saints,

    Do you think you are having a problem converting T4 to T3. Possibly NDT might suit you better.

    As others have said ensure that your B12, D3, Magnesium, ferritin levels are optimal. B12 needs to be at the top of the range, D3 50-70 ish, we are all depleted in Mag due to modern farming methods which exclude mag from modern fertilizers, ferritin 70-90 ish for thyroid hormones to be utilised by the body.

    You should post your test results here for the 'wise ones' to look at and make suggestions.

    Sorry you feel bad - but it is possible to get well, with or without the help of the NHS.


  • Thanks Finola, I had a head injury as a child which is what started it all off, Ive been under the hosp for 30 years but recently feel like im going down hill. only wish i knew of a good endo that didnt just right your symptoms down but did something to help, Thanks again June x

  • Hi, I also go to the Royal in Liverpool! I've had my thyroid removed due to cancer, but am still largely housebound 2.5 years later.

    My experience has been similar to yours. They're not really interested in getting me back up on my feet. At first I used to ask a lot of stiff questions, and insist they changed things every 3 months. But once I got well enough to read this forum and a little extra, I haven't really bothered to insist. They know I can't work (I'm 36), and that my quality of life is poor, but they are happy to just leave me to rot.

    They really only know how to administer the most basic T4 treatment. Now that I've got years of numbers to look at, I don't think they're even using TSH to adjust it. Just that Miss Waghorn gets into her head at one time period that an increase in meds is what I need, and at other times a decrease. Not backed up by any evidence. All they know is that I'm not getting improvements.

    The only thing that might be useful to you is that I have been prescribed T3 there, which is something that's often worth trying. But I have now seen 2 different private doctors from the Thyroid UK recommended list. Recently seen the one who is probably everyone's favourite, and he thinks I have been enormously overmedicated. I am in the middle of changing over to a lower dose of NDT, currently on less than half of the starting dose I was given at the Royal (that we then increased from), am 5 weeksin and definitely feeling no worse. Head and joints are both much clearer.

  • When you say private i asume you pay private, what kind of cost is involved. I would just love to see someone who understands how i feel, maybe some who has the same problem lol . How far do you have to travel to see them too Thanks June xx

  • It's been around £180 for first appointments, less for follow up. Tests cost an average of about £100. With the first one I saw I paid a decent amount in total, £1500 maybe. Then I saw Dr P and he said I would probably only need to see him once. I'm in Liverpool and I've travelled to London and Manchester.

    There is a ThyroidUK recommended list you can get by emailing Louise Warville.

  • My pituitary does not produce any TSH and I had a really hard time getting anywhere with the NHS. They simply do not understand that if you have no TSH then all your T4 is going to convert to Reverse T3 and block any activity of any small amount of T3 that you may produce. I nearly died until I found this out on this forum and since then I take T3 medication only as that's all that is going to work. I nearly died with chronic myxoedema before I went on to T3 medication and now I am much better, can play regular games of tennis and I have lost 3 stones in weight. My brain has woken up and despite a diagnosis of dementia I am still functioning well some 10 years down the line. i had a real hard fight to get my Endo to prescribe T3 but now I get 60mcg per day on the NHS to keep me going. If you are lucky enough to get an Endo to listen to you, get them to read Paul Robinsons book about T3 to complete their education. T4 is just making you sicker and sicker, its T3 you need when you don't have a pituitary that functions.


  • Thanks Heather

    The endo i have seen for years is actually a professor and recently for some reason i have been passed over to another dr. Bearing that in mind neither have ever done anything really. I will go back to my Gp when my bloods are back and ask his advice. Its like hitting my head against a brick wall. Im only back in April next year thats if my apt doesnt get cancelled nearer to the time, as it usually does 2 or 3 times .I'll defo ask about t3 though June x

  • Hi June,

    Interestingly my lack of TSH has also been caused by a head injury about 25 years ago. Apparently if you have a basal skull fracture it quite often causes the pituitary to gradually stop working and hence the failure of the thyroid system. You may have to push very hard to just get T3 but don't be tempted to take T4 as its just going to make the situation worse. Even looking at blood tests is not going to tell you anything as Reverse T3 is not often included. It will take up to 12 weeks for any T4 to clear out of the system before you start to feel the benefits of T3.

    Good luck,


  • Hopefully they will let me try, im getting quite desperate. On my bloods form it tells you my result and the range it should be in , everything is within range, like you say, but not helping at all, Thank again June xxxx

  • Firstly you have Central /pituarity hypothyroid

    Your tiredness is typical of undertreated hypothyroid

    Do you have results for

    Free t4

    Free t3

    You are entitled to them and its vital that you have a record of them too

    Levo can cause some people lots of problems especially if your sensitive to the fillers

    As others are saying you might be better off on NDT and ignoring the incompetance of the NHS

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