Need some support, feeling very low

Am feeling very very low again and need some support from my fellow sufferers.

As hard as I fight I just get knocked back down with more symptoms. My weight (or the lack of it) is now worrying me. I am skin and bone and still finding it difficult to eat enough because of the anxiety and nausea. I make a homemade fruit and veg smoothie every day that I sip on but I don't think I am getting enough carbs. I have avocado every day and also oatcakes but I am still losing at least a pound of weight every day.

I am sick to death of tests, none of them are coming back with anything definitive as to my root cause or anything positive that I can cling on to; I am beginning to think my endo was right "it's all in my head". Have a test to do for Candida, gut parasites and alike which I can't do until Monday because I need to lay off the probiotics for a few days. Even though my last stool test for leaky gut said negative my Functional Medicine Dr still thinks I have it so I am hoping to prove him wrong and then find someone else to try and help me because I am at a total loss now as to how to help myself and just going downhill fast again.

Is there no-one in this country that can help me with my adrenal problem because if I could get on top of the high cortisol and the shitty anxiety and nausea it causes, I would feel able to eat properly and be well on my way to some form of recover, but I can't find any help here. My FMD insists that it's my autoimmune problem that needs to be controlled, calmed down and everything else should settle down after that. I have asked and asked about adrenal support but still no help. Holy Basil didn't work and the PS doesn't seem to help.

Am having a skype appt with him tomorrow evening to go over my 23andme results which shows on the neurotransmitter section that I have many dysfunctional genes ie. high glutamate and very low GABA/Serotonin which kinda explains my current mental health.

The report has also indicated that I would benefit from some progesterone. I sent my GP the report and asked him about it but he hasn't come back to me and I know he will be skeptical at those types of reports. I know for a fact he doesn't really approve of anything I am doing with my FMD; he just thinks he is jumping on the bandwagon of someone who is ill. My response to that was "well you can't help and don't seem to want to try, so what the hell am I supposed to do?" All he does is fill me with beta blockers, diazepam, wanted to shove me in a mental hospital and then on top of that he decided that HRT patches would solve everything; so that's another test I have to do (full sex hormone) to see if I would indeed benefit from some progesterone being post meno

Where the hell am I supposed to go for help? I wish I had the energy to climb on top of Buckingham Palace and cry out for help in the hope that some professional watching me on the news would take pity on me and take me under his wing and help me. I have even thought of doing a begging video on YouTube!

I can't do this alone anymore, I have tried and am still trying but am losing the will to live again. I am also pissed off at the lack of, or should I say NO support around me. My only two friends still have NO comprehension of why I am ill despite my telling them both the same crap over and over.

What the hell has happened to me the last 12 months? I am like a frightened child, mentally unstable, sensitive to light, noise, my bones ache, my vision is blurred, so fatigued, confused, desperate and every other symptom that you can think of I have.

I mean how long does one have to be patient before seeing ANYTHING positive, just a smidge would be nice just to give me a boost...but nothing!!

Why are we all suffering so much and not able to get the help we need? WTF is going on in this world, no-one seems to care anymore. None of us should be suffering the way we are, it's just WRONG!

56 Replies

  • Good evening Jefner,

    I am sorry that I am unable to assist you as am new here and no where near knowledgable enough. I just wing it with my own GP. Just wanted ou to know someone cares and is listening :)

    I am sure someone who can actually help you will be along soon.

    Kind regards


  • Think that high adrenals is an important root cause? Maybe better have another post with that in the title?

    Functional doctors often are highly appreciated.

    (All kinds of stress causes adrenal problems :-( )

  • aljii

    have asked before hon with no joy

  • Jefner - can you give us all the latest test results you have with ranges and we might be able to advise some practical action you can take to help reduce physical symptoms which should then help your anxiety.

  • startagaingirl

    Thanks hon, all my results are on detailed on my profile. There isn't much anyone can do, it's the cortisol causing me the most problems with the anxiety. Most of the regs know my situation which is trying to get my levels right with the addition of some t3 which is why they haven't commented.....they see me as just ole Jennie having ANOTHER rant and a moan. I am going to remove my post I think cus everyone is sick of me

  • Jefner - nobody is sick of you, please don't think that. Be patient until you've spoken to your FMD about your 23andme results.

    Some of us are difficult to treat, we're all individuals after all. I've had to look outside of the thyroid box and discovered I have Lyme disease, once again the not-a-health-service were nowhere to be seen. It's hard dealing with this stuff but you have to believe that you can get better.

    Hang in there girl.

  • With high cortisol you should be putting up weight not lose so it sounds very complicated situation. I remember someone mentioned that urine cortisol is more accurate than saliva and regardless of high saliva cortisol you might not use a lot? Don't know if it is true tho.

    But high cortisol causes low serotonin, so does hypothyroidism. High cortisol causes depression but so does depression cause high cortisol. Hypo causes depression too. In your case It's really hard to say which was first :/

    Sounds like you are malnourished for some reason. You eat but not absorb the food. I am same but with low cortisol. I lose weight easily and only thing that helps me is potatoes or should I say resistant starch. I can eat lots of carbs, even sugary stuff and lose weight. I don't have diabetes.

    Tho diabetes could cause high cortisol too.

    Have you had adrenal gland/pancreas ultra sound if there is a tumour?

    These all probably ruled out already.

  • Had ultrasound and scans on adrenals

  • Hi Jenfer,

    I'm no expert - just another member struggling to understand my condition and function. First up, I think I need to change my surgery as no way would I get all those tests and still I'm viewed as depressed and anxious! I also have a growing thing about the all too ready anxiety/depression/somatic dx. Talk about treating the consequences. Anyone feeling this poorly and unpredictable with it's impact on personal and professional life...HELLO! It seeming very sexist too - and not just for thyroid disease.

    I've just quickly scanned through your thyroid panels and see levels have jumped around, possibly even a conversion issue in some. The recent results:

    ***12 Sept**** - after being on 10mcg t3 and 75 Levo for just over 3 weeks

    TSH 13.69 (0.97 0.27 - 4.20 IU/L

    Free T4 14.43 (12 - 22 pmol/L

    Free T3 3.18 (3.1 - 6.8 pmol/L

    ...seem pretty classic of under replaced. That could drive or exasperate your high cortisol and anxiety. Something I get when low along with a host of niggling emotional/mental and physical aberations. Not that I mean its your only driver but isolating the simplest stuff first. I'm not experienced enough to comment on any other results but am interested in what your FMD says about latest thyroid levels - should you now be raising? These levels for me would mean I was on my knees with pain, fatigue, anxiety, gut issues, neuro name a few. I think you need to post again with short overview and lab results so at least the thyroid hormone status can be looked at, alongside any other potential factors. I know the info on your profile is comprehensive but you need to have it instantly available on post.

    Talking straight, meaning well x

  • And your question about burn out. In my experience..and I experience it a lot, I frequently screw up because I use up every ounce if energy...boom and bust. This can raise cortisol, which can block t3 getting into cells (according to research), drive down adrenals...tired and wired is a starting clue, then crash. Blood sugar regulation will be upset which will further skew cortisol..vicious cycle and whole hormonal arena in uproar. Try to find ways to rest to give your body a hand with resetting itself. Some folks need to address adrenal fatigue before raising thyroid replacement. Some find, like me, adrenal function will rise with thyroid level. Raises must be in small increments to avoid crashes. Golden rule, adrenals can't keep up continued high demand..

  • Upped my levo to 100

  • Are you sure it's high cortisol? My low cortisol gave me the symptoms you describe and the compensatory adrenaline rushes cause anxiety. it's possible since the last test you had that your adrenals have packed up and are now not producing enough (it usually goes too much, then not enough). Adding t3 can stress your adrenals more and push you on to the next stage. I'd put that to the functional doc and see what the response is. Don't bother with the NHS, they won't have a clue.

  • He cant help me on the meds side as he isnt that sort of doc. Symptoms for high and low cortisol are pretty much the same from what i have read. I havent tested for a couple of months but have another saliva test kit ready. Just cant get up early enough to do it

  • Jefner - have you considered heavy metal toxicity?

  • cinnamon_girl

    Thought about having that test, have you had one?

  • Yes the urine test using DMSA and believe it has to be done via a health practitioner. I have some very high levels.

  • cinnamon_girl

    where did you have yours done. Found this that you might find interesting

  • Google Stephen Barrett of Quackwatch.

    Will send you a PM.

  • cinnamon_girl

    Oh I see what you mean, sorry

  • I set 3 alarms 15 mins apart. That's irritating enough to allow me to spit into a tube, at least.

  • Alarm on, then go back to bed perhaps. You need to know which way it is before tinkering with dose. Agree with Angel. I got into problems with t3. Are you taking to aid conversion?

  • helbell

    I hate waking up every day, I fear it because of the anxiety I have to deal with and it makes my day much longer getting up early which is why I keep putting the test off. Have to be up for at least an hour before doing the first sample. I started t3 at the end of June because all my results confirmed I wasn't converting.

  • Ive had the anxiety, and black depression but not as bad as you are suffering right now. Put up another post for dealing with the anxiety, too. Its not going to go overnight but you need some management strategies while you investigate everything else. The aches and pains and fatigue: repeating myself, but I would look at eliminating thyroid, adrenals and VIT levels before going through different diet regime hoops. Apart from excluding the obvious inflamatories like gluten and crap food including sugar. That anxiety and dread grabs your head like a vice and fear just colours over everything. I expect your fmd is advising on what herbs etc to help relieve which are safe for you to take? Your symptoms take me right back to the 18 months of hell before hypo was diagnosed. X

  • helbell

    I have Diazepam to control the anxiety which helps. My vit levels are fine, all checked recently. Funny thing is from late afternoon onwards I feel fine (when my cortisol levels go down no doubt). I have even got in the car and gone round to see my folks three times in a week which I haven't been able to do in months.

    I put that to a psychiatrist whom I saw only once. She said it was just depression and feeling better later in the day she sees quite often but she never explained why or how.

    Yes Socrates said that all disease starts in the gut which is why I am having another leaky gut test because the one I had before my FMD dismissed saying it wasn't accurate enough and because I have Hashi's I deffo have leaky gut. The test also includes Candida and gut parasites. If it comes back negative then that will shut him up hopefully.

    I am skyping with him tonight, as he is in the States, to go over my 23andme results which are quite interesting but he won't address my adrenals. He says my gut inflammation is priority and that is causing all my problems. I just don't know what to think anymore, I have had enough and want out!

  • I don't get it. I believe leaky gut can cause autoimune, but hypothyroid status can cause gut issues. I would have thought you need healthier thyroid levels to support gut motility and acid production both of which, if underactive, can cause or worsen leaky gut. Anyway, no doubt he knows what he's on a about. All I feel sure about is a body can't function properly in any dimension with low thyroid hormone levels. So, ultimately, I take it he is OK with trying to treat you while under active and aiming to relieve source of autimmunity and the thyroid will rebuild itself.

    Anyway, no doubt you will have an in depth consultation tonight. Good luck x

  • helbell

    I only have 2cm left on my thyroid, my body has destroyed it

  • You need thyroid hormone. I hope he discusses this in relation to your treatment plan.

  • helbell

    I have upped my hormone. All the regs on here know the situation with my levels. My Functional Dr isn't that kind of Dr, he can't discuss meds with me

  • OK

  • Morning, I have just found a comment on Kesser's blog that backs up Angel's comment above. Pasting just in case there is any nugget to explore. I found the progesterone cream comment interesting. Been using for years but slipped lately.

    By a hypothyroid nurse " (from my experiences):We get what appear to be hyPER symptoms AND lab results when we are hyPO. What occurs is that when the body senses the metabolism slowing due to low T3 (the active thyroid hormone), at the CELLULAR level (not in the bloodstream), in it’s effort to maintain homeostasis, the adrenals are given the signal to increase catecholamine output (adrenalin) which revs up the heart rate and BP, causing anxiety, heart racing and palps. Low T3 at the cellular level also stops production of progesterone (elevating estrogen unopposed by progesterone) and increases cortisol. Progesterone is a KNOWN component of converting T4 into FT3, and I notice my T3 works better when I use my OTC progesterone cream."

  • Hellbell

    Thank u hun. I am going to be getting my sex hormones checked

  • I need to do that. I falsely assumed it wasn't so critical post meno but not so. Anyway, I'm just reading the adrenal reset diet...broody brill. Good section on blood sugar, cortisol and anxiety peaks X

  • Hellbell

    Is that a book or article. Do you have high cortisol?

  • I don't know but do have saliva test waiting to be used. I got the book because I crash a lot. Also getting probs with low blood sugar, shakes and tremors, and waking too lively in the morning only to crash very quickly. Google The Adrenal Reset Diet book. Got mine from Amazon. He has a website and blog, and now live faceBook podcasts. I have just downloaded free recipe book from website. I'm just having a good look at him online now, and he also declares especial interest in thyroid issues. The book makes sense, full guidance with good information and explantions to follow up. Interesting points about why no carb diets can upset cortisol... Etc

  • Hi, so sorry you are feeling like this. Have you tried any protein shakes with added vitamins? They are not a magic wand but may help to boost your body a little. Can you keep milk down?

  • katiekatie

    Can't have milk, am dairy free. Wouldn't know what protein shakes to buy, depends what they have in them

  • I think you can mix some with water you can with mine. I mix mine with skimmed milk or you can use a milk alternative. They have a full list of what is in them on the back, so may be worth say going into Holland and Barrett and having a look. It's up to you of course just a good way to get vitamins and minerals down.

  • katiekatie

    I can't go out I am agoraphobic

  • You can order from Holland and Barratt online I think. I got one called diet fuel and it helps when you are majorly run down. I also went very thin as a kid and couldn't eat due to anxiety and various other things. My mum gave me complan. I think the ingredients are listed on the website. Sorry you are going through this.

  • katiekatie

    Had a look at the ingredients but it's very high in carbs and I am not supposed to have high carbs because of my high cortisol

  • Ok sorry for sending you on a wild goose Chase. Hope you find a solution and start feeling better soon.

  • Katiekatie

    Thank u for your help. I might get some anyway

  • Hi Jefner,

    Just read your post, Try Ashwaganda, You can buy online it's good for Adrenals, cortisol and Thyroid issues..I take it and also I had Theta Healing for my anxiety,sounds odd but was amazing...A woman called Liz Alexander does it in London or Skype sessions. Worked wonders for me..

    Good Luck,


  • amyjay74

    How does the Theta work and what are the costs?

  • Honestly, you really shouldn't believe everything you read. It really doesn't bother me if that's your view. I think the fact that it is a BBC reporter tells you all you need to know.

  • how does it work for anxiety

  • It just does.. I cant explain it. I just know it has worked for me and many friends of mine who have been for various issues..Depression, anxiety etc... I couldn't even leave the house or answer my door as my anxiety was so bad.

  • wow that's interesting, I will look into that after all. How are you coping now?

  • I am well now, had low vit d so had injections, I self medicate with NDT and feel normal now, has taken a few years though. No anxiety anymore either. There are some rubbish people out there so I can only recommend Liz..Google her. If its not for you that's fine I just like to share how I got rid of mine x

  • are you sure it wasn't getting optimal that sorted the anxiety out for you. Just had a quick look at her site and can't find out how the therapy is actually done. What does she do?

  • I didn't get my Thyroid levels sorted til this year, I saw her first a few years ago so No it was definitely the sessions with her,I noticed a difference immediately. I cant explain it, You will have to call her she can explain better than I can. :) You just sit in a chair and she speaks to you, nothing scary.

  • interesting :) what does she say to you then,

  • then again it's mostly my adrenals that cause my anxiety but I do need to change my thought processes. Does she do that?

  • You will have to get her to explain, Its your thought processes that she works on. Ashwaganda is good for Adrenals...

  • Reply posted below...

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