I often browse this forum but have never posted labs before. I have a diagnosis of CFS/ME and have done since 2007. Done lots of digging of my own to get to the bottom of this diagnosis and I've concluded that the cause of it, is thyroid and adrenal problems.
I'm going to post my lab results for thyroid and 24hr saliva adrenal testing. I'm wondering whether I have a pituitary problem or just hypothyroidism and fatigued adrenals.
At present, I take 12.5mcg of T3 at 3.30am to help adrenal function. This is really helping me.
I then take 1 grain of naturethroid at 8am and 0.5 grain at 1.30/2pm.
When these bloods were taken, I hadn't introduced the afternoon 0.5 grains of naturethroid at 1.30/2pm. That is a recent addition.
I feel very fatigued still and energy is rollercoastering around. Up and down all day long. I'm at my wit's end tbh.
Adrenal saliva 24hr testing:
8am - 13.5 (12-33) nmol/L
12 noon - 2.8 (10-28) Not a typo!
4pm - 8.3 (6-11.8)
Midnight - 1.0 (1.0-5.0)
DHEA
8am - 22.0 (8-24) nmol/L
12 noon - 6.5 (5.0-10.8)
4pm - 6.6 (3.5-7.5)
Midnight - 11.0 (2.0-5.0)
Thyroid etc
CRP 0.70 <5.0 mg/L
Ferritin 46.4 - (20-150 ug/L)
TSH 2.20 - (0.27-4.20 Iu/L)
T4 Total - 67.6 (64.5-142.0 nmol/L)
Free T4 - 10.76 (12-22 pmol/L)
Free T3 - 3.82 (3.1-6.8 pmol/L)
Anti Tpo - 7.1 <34 kiu/L
Anti Tpa - 64.7 <115 ku/L
B12 - 776 - >725 I inject B12
Serum folate - 14.56 (10.4-42.4 nmol/L)
I feel really ill today. Every time I try to increase my NDT, I feel worse. It's taken me about three years to tolerate 1 grain naturethroid.
I tried hydrocortisone 10mcg for my adrenals but it made me feel worse, rather than helping me.
Where do I go from here? I see a private doc in Wales - ME/CFS specialist. She prescribes my treatments for me. I can access medication but just can't make it work for me. I have three children to look after and lost my teaching career to this illness; whatever it is!
Any help or advice would be greatly appreciated. Forgive me if it takes me a day or so to read any replies. It has tired me out just to write this.
Best of health to you all xx
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Ihave3kids
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Ah sorry. My brain fog is that bad, I don't interpret things properly. I only use the t3 purely to aid adrenal function. I've tried higher and lower doses for the circadian dose and 12.5mcg is spot on for me.
I could try replacing some of the NDT with T3. I suppose I've posted these results to ask if anyone can notice anything other than straight forward hypothyroidism? Are these results reflective of primary hypothyroidism? Is my low cortisol perhaps the reason why I can't increase my thyroid dose? Are my cortisol results dreadfully low or pretty run of the mill?
Any light shed on anything will be much appreciated! Thank you.
Hi - my impression is a picture of long-term under-medicated standard hypothyroidism causing adrenal fatigue. I believe a pituitary problem typically produces a low tsh with a low ft4 and ft3. Your slightly raised tsh looks to be consistent with your lowered ft3. Your t3 dose is helping your ft3 levels which is subsequently reducing the load on your adrenals. If the timing helps you then fair enough, we are all individuals and find best timings can differ. Your dip in cortisol at noon may well be the time when your body has consumed the last of its inadequate dose of t3 and hence there is higher demand on exhausted adrenals.
I assume that your Anti Tpa is actually TgAb or thyroglobulin anti-bodies since that range is typical for that. These occur when dying thyroid tissue releases a protein into your blood that shouldn't appear outside the thyroid. Your immune system recognises this and attacks it. This is relatively high and could suggest that you actually have Hashimotos but with fluctuating anti-bodies that were just low at testing time. Have you considered this possibility? Have you ever tried gluten free?
As I have already said I believe you also need to address your sub-optimal folate and ferritin. It is also likely that your vit d is deficient at this stage. These deficiencies will not be helping anything and may well be why you are unable to raise your dose.
As Greygoose says, maybe you should try to add more t3 rather than more NDT, it could be that you just need a higher ratio.
If finance is a problem, I would personally be inclined to skip sessions with your private doctor as she obviously isn't helping that much and use the money saved for decent (single element not multivit/mineral) supplements instead and source t3 & ndt yourself to save money.
Advice on this forum has been proven time and time again to be much more expert and helpful than that from very expensive private doctors, so why not use that for a while instead?
Thank you. I have written a reply to your helpful response in the thread regarding your analysis of my thyroid antibody results and a question about hashimotos but I didn't reply directly to you because I didn't know how to but I do now but I'm too tired to type it all out again! Hope you find it!
I don't have a recent result for vit D. I used to supplement 50,000 iu once a week based on advice from my CFS doctor. I then stopped (due to supplements costing too much etc) and went on to a run of the mill multi vit and mineral complex. I was thinking of upping my vit D dose again actually, just for a couple of months to see if it helps in any way.
If you go for lower dose supplements of vitamin D3 but take them more often you'll find the cost is much more reasonable than the very high dose ones. Quite a lot of companies sell vitamin D in quantities that will last 6 months or a year at fairly reasonable cost. But you would need to test first to decide what dose you needed.
You can get vitamin D tested on its own with a finger-prick kit :
I was prescribed a whole package of supplements to improve mitochondrial function. I took them religiously for several years and they helped somewhat but I cut back on them in the end, to save money. Supplements included magnesium, b12 injections and basically a very comprehensive mix of all of the vits and minerals that I've seen recommended. It's my own fault for cutting back if I'm deficient now. My doctor is brilliant on the supplement front and left no stone unturned. I will have to start on the whole package again because if I'm deficient in some again, I'm probably deficient in others again too.
Money is the eternal problem. We are just about to downsize and move house, so that I can afford to pay my medical bills and access the tests that I need and maybe even a private endo. That's how desperate I am. Ten years of illness have exhausted any funds we once had and I'm finding it increasingly hard to pay for my private medical care on one wage, with three kids and a big mortgage.
With vitamin D once you get your level up to around 100nmol/L then it isn't as expensive to maintain it there. So you won't need to take 50,000IU per week instead you will need around anything from 5,000-20,000IU in smaller dose tablets which are far cheaper to buy.
Likewise with iron you can take the cheaper ferrous sulphate or ferrous fumerate. Then once your level is halfway in the range you can cut back to a few tablets a week to maintain it there.
Both vitamin D and iron are toxic if they reach a certain level in your blood, so in short while taking supplements is expensive you may not actually need the most expensive versions or the same amount continuously.
You are referring to Dr Myhill and her comprehensive mixes? Be very careful as almost all of them that I was using contain iodine. It is the fly in the Myhill ointment in my opinion. I am Hashimoto's diagnosed and felt much worse on the Myhill ones due I belive to the iodine. For us to take any we need to be tested first and then only dosed if necessary not taking substantial doses. Her regime is good but thyroid diagnosis trumps the massive grey area that is CFS.
I had very bad resctions ti her mineral mix and the multi vitamin she recommended. Calcium shot up. They are not strong enough in some and too much of others.
Exactly. And what we actually need is personalised medicine. I am struggling to work out what I am reacting to so badly at present but at least all my supplements are individual compounds. And personally I prefer the advice on here for thyroid as although the Myhill website explains lots of issues well what most of us need is the info to enable us to self medicate. Without good FT3 levels we can't be said to be adequately medicated and the current medical profession are simply not going to get us there, or indeed notice.
I agree cwill. The irony is that seriously ill people should not have to source, organise and pay for their treatment and medication. It becomes almost impossible at times, especially when I'm trying to look after my children who are 15, 13 and 11. Mind you, thank heavens they are older now. The last ten years have been so hard. I just haven't been able to concentrate on getting myself better because they have been my priority. A decade has gone by in the blink of an eye and my illness has been tackled in dribs and drabs but I need to fully focus on it now. As I said, we are planning to downsize our house. If I end up having to free up money in that way, to see a private endo, I'll have to try and do that - if I can't make headway doing it by myself.
Dr Myhill has always said that my thyroid and adrenals are implicated in all of this but I still think seeing a good endo (recommended by people on here etc maybe), might be where I end up going with all of this.
I need someone to fit the pieces of the puzzle together for me. It's like I have them in my hands but I'm not sure what to do with them!
Do try the dose changes recommended here before you pay for an endo. A lot of us even privately have been very dissapointed. You might go through more testing and private sessions only to get the same or similar advice.
And ill as we are we have to decide what serves us even if the advice was paid for. My gut told me that my throid had never been fully addressed and voila I was spot on. Sounds as if you need to put yourself first.
Thank you cwill. I will heed that advice. This is the kind of stuff that I'm here to learn. So the private endo help is not necessarily the be and end all that I thought it might be. I suppose I should sort of know that really but I'm a sucker for pinning my hopes on things. I suppose it's how I've survived a decade of abysmal health. Just lurching from one hope to the next really.
I will try the dose changes recommended here. I am so grateful for all of these replies. I'm going to slowly go through them and write down all of the suggestions and look at them one at a time. So much to think about and I'm glad that I finally posted here. Thank you x
empathiise, 3 now young people and hubby just list job! PM and i can recommend some names. One in lincoln nd one in sheffield. Not seen Sheffield one yet but Lincoln one good about T3
Thank you. I will DM after I've helped my daughter with her project! I'm sorry to hear about your husband losing his job. Mine has just been cut to 4 days. Hence, the house having to go.
Given that it is summer at the moment I would suggest obtaining vit D from sunlight by making sure you get sun exposure most days. Obviously make sure you don't get burnt but if, say, you have a private garden/ balcony, strip off and catch those rays for a while. That's the best sort of vit D. That's how we're designed to obtain it. When you're outside with the children wear sleeveless tops rather than long sleeves -and shorts rather than trousers.
Thank you bluebug. I'll supplement for a couple of months, by which time I'll be ready to see my ME doctor and then I'll ask her to check my vit D and run a full iron panel too, to check that I'm not running too high.
Thank you humanbean. I will check out that link. Anything to keep costs down is much appreciated. They have stacked up over time and I thought (stupidly) that cutting supplements once my levels were restored, would sort of be ok but I can see that it's really not the way to go!
Each reply you've been given has a Reply option at the bottom of the post. If you click on that and then write your reply in the box that comes up, the person who wrote the original reply will get notified that they have been answered.
If you just write a generic reply, the person you are replying to won't know about it.
I think you'll find testing and supplements are lower in cost if you ask for advice on sources from here. If you've been seeing a private doctor or nutritionist, and paying for private prescriptions or recommendations I imagine the costs will be eye-watering.
Regarding your thyroid numbers, you are clearly hypothyroid, but since your TSH is within range the NHS will say that you are fine. Self-medication is your only choice as you've discovered.
NDT and T3 can be bought online. T3 is harder to get than NDT because there are fewer reliable sources (body-building sites are not reliable sources, and their prices are often astronomical). Please note that there are several makes of NDT, and some of them (the Thai brands) are a lot cheaper than the US and Canada ones. Lots of people do well on the NDT from Thailand. Strangely enough, Levo is actually surprisingly expensive to buy online, probably because many people prefer NDT and T3.
***
I'm reluctant to suggest supplementing iron based on just a ferritin level. If you could get a full iron panel done as well, it would make the decision about whether or not to supplement a safer one.
If you've had a recent full blood count done that might help a bit.
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The reason you might not be able to raise your dose of NDT is likely to be tied up with your low cortisol levels. High or low cortisol make it very difficult to raise thyroid levels. I was on a ridiculously small dose of T3 (it's all I take), and couldn't take any more without heart problems. I managed to find something that lowered my cortisol (mine was high) and I was eventually able to double my dose of T3. From the reading I've done the same problems occur with tolerating thyroid meds when cortisol is very low.
Low nutrients also make it hard to raise dose of thyroid meds in my experience.
Thank you humanbean. I am grateful for this info and for you pointing out how to reply to people properly. I'll check out that adrenal link later on this evening. I do source my own T3 from Greece and it's £20 per 100 tabs of genuine Tiromel but my private doctor prescribes my NDT at the moment, so sourcing that myself might prove to be cheaper.
If I go it alone more, then I'll probably be able to afford to get the testing I need some more often, rather than paying for consultations too!
I take T3 to raise my low cortisol - sarahpk. I take it at 3.30am as per Paul Robinson's protocol. It seems I have the opposite problem to you, regarding cortisol levels.
Sarahpk Holy Basil helped me to reduce my high cortisol. I took this one for several months, starting at a dose of 6 capsules a day (taken in 3 doses of 2 capsules) at a slowly decreasing dosage :
There are loads of others to try, but I've only tried the one kind.
There are other things besides Holy Basil that help people lower cortisol. It really is a case of trial and error to find out what works for you. Some links :
Some people find Seriphos (phosphorylated serine) helps. It has been reformulated in recent years. (It was changed and then changed back.) Make sure you get the "original formula" seriphos if you try it.
Thank you startagaingirl. All of what you said makes sense to me. I suppose you are right when you say that directing funds to medication and specific single source vitamins is more beneficial than the private sessions.
I suppose I should also put that money towards specific testing too and do as much for myself as I can. I'm a bit confused as to whether I have hashimotos or not with those results. Just to clarify those antibodies results again as I think in my brain fogged stupor, I muddled one of the abbreviations, so here they are in full
Do they indicate hashimotos?!?
Anti- Thyroidperoxidase abs - 7.1 <34 (KIU/L)
Anti- Thyroglobulin abs - 64.7 <115 KU/L
I'm gluten free and have been for 8 years now. Thank you very much for replying. It reassures me a little to know that my results are consistent with longstanding primary hypothyroidism and are not representative of secondary hypo.
I apologise if I seem as though I'm not following the thread in the right order or processing all of the info properly. I will re-read this thread, quietly again later on. Brain fog and fatigue are making any intelligent coherent response, almost impossible at times!
Hi - no problem - I saw that you had replied. I think we all recognise that brain fog and fatigue - been there, done that!
The problem with anti-bodies is that they fluctuate depending on whether you have had a recent attack or not, so whilst yours are both under the top of the range currently that doesn't mean they always have been. One positive test result at any point in time proves Hashis, but one negative does not disprove it. But from what I have seen in this forum, it would be unusual to have a relatively high in range TgAb without being Hashis. This is the rarer one that only really happens as an after effect of an immune attack on the thyroid.
I would be inclined to go forward assuming that you are. This causes 90% of all hypothyroid and your long gluten free period may well be helping suppress the anti-body counts. Do you have any ongoing digestive problems? Nutrient deficiencies in hypo are typically caused by a combination of low stomach acid and food intolerances causing malabsorption in the gut. Some of us find further food issues beyond gluten. For instance I have proven to myself through elimination and subsequent gut healing that I am quite badly intolerant of dairy, gluten and soy.
A couple of the more widely referenced sources for Hashis info are Isabella Wentz, (the thyroid pharmacist) and Chris Kresser.
Unfortunately many of us have found that it is only through taking control of our conditions back from the medical profession (NHS or private), using private testing, good supplementation and advice from here, that we are able to feel like ourselves again. I now believe that I had hypo issues for well over 20 years before diagnosis last year at age of 48 and yes it took a few months and a fair amount of commitment , but I now feel better than at any time since my early 20s, even though I feel a bit rattly sometimes lol! So there is hope.
You have put a lot of effort into your health and you are here asking questions now, so you can do it - hang on in there - the only way is up!
Ah ok! Yes, I always had a problem with gluten and when I cut it out after developing CFS/ME symptoms, my gut issues improved dramatically. I was reading those antibody results as being negative for hashimotos but now I understand your interpretation of them and it makes sense. I have other autoimmune type things going on - Raynaud's has been with me for 20 yrs - I'm now 43.
I do react to other foods too. Nightshade are horrendous for me and cause inflammation for me.
I am so happy that you are feeling better than in your 20's! I have lost ten years to this illness and half of that was being told I had ME/CFS which was deemed 'incurable!' Not by my ME doctor , I must admit. She pointed me in the direction of thyroid and adrenal probs but just by the medical community in general.
To hear that people like you really do become properly well again, is amazing. I've never spoken to anyone before who has got on top of all of this! If I could manage to do it too, it would be better than winning the lottery xx
I have just had a peek at your bio and it sent a chill through me reading that. Well, a chill and a tear in my eye too. So you know exactly what I'm harping on about. I'm so pleased that you are getting there and what a long way you've come, from being bedbound. That is some journey; some fight. Isn't CFS/ME just the 'pits' of a diagnosis? All the time I've somehow known that my body has the ability to be well again but I just haven't been able to piece the puzzle together and maybe now I'll have a shot at it. I hope you go from strength to strength and I'm glad that you plan on kicking up a fuss when you are well again and I'll be another one doing the same. I want to prevent others from living this hell and being told that they will never be well again xx
See my comment above re iodine as Dr Myhills potions all have it in and were making me worse. Also do a search on here re iodine and hypo. We have to pass on what we learn as that knowledge is really hard won. I would strongly advise that you sort your thyroid and supplements as a matter of urgency. My severe adrenal fatigue of 8 years simply resolved with good nitritional supplements, good diet, rest and dissicated Thyroid that finally had my brain work properly and my labs look good for the first time since diagnosed. And there was a course of antibiotics for two weeks to sort my awful gut bug that wasn't going without a firm boot.
Just a thought but does your GP not do regular Full blood count to keep an eye on your progress and would check other tests for you? They are really poor in terms of diagnosing and monitoring CFS so it could be worth a visit with an advocate to help you stick to the issue at hand and help argue your case for monitoring. I honestly told mine that I was doing so much privately but could not pay for everything adding the this visit was about new symptoms and a real change in my health so may or may not be associated with my current diagnoses. Worth a try as otherwise they will definitely leave it all to your private specialist quite happily.
My GP refuses to run anything other than the TSH test. He tells me my thyroid is fine. He told me to get thyroid hormone from my private doctor, if I thought I needed it. He basically ignores the fact that I have a diagnosis of CFS. He told me it must be something else and tested for diabetes etc, which all came back fine. My old GP was very supportive but I moved house, changed surgery and this practice is appalling. I haven't shown him these recent private thyroid results. I need to. They prove my free t4 is too low and that's on 1 grain armour and 12.5 mcg T3. How low were they when I was on nothing and my TSH was 3.89 and he still refused to prescribe thyroid hormone?! He needs to see that the TSH test alone is not sufficient but I haven't had the energy to go back to see him because I'm too busy sorting out all of this myself! It's a ridiculous situation but I see on here that it's all too common! X
Oh well just a thought. You know that there are NICE guidelines for CFS/ME that state that you should have a point of contact at the surgery and a treatment plan. I had a good laugh at that as 'don't come for anymore appointments as there is no point' was my original GPS responce to having made the diagnosis. I had to wave the guidelines around to get a referral to a specialist that she then claimed to know all about, but only after I had told her. Seen the comment re iodine?
Well I never knew of those guidelines. That is VERY interesting. Did you have an original diagnosis of CFS/ME then? When you successfully managed to get referral to a specialist - what specialist was it and did they diagnose hashimotos or did you already know that you had it?
It is Myhill's mix and yes, it does have iodine in it - which I never thought was a prob until now! I will bear that in mind. Thank you. I like the way that you refer to a diagnosis of hashimotos 'trumping' the grey area of CFS/ME. It's certainly a more concrete diagnosis to move forward with and it gives me hope, that I can be well again.
I went to CFS/ME specialist as that involves way more blood tests and confirmation as they see it anyway that you have no other reason for symptoms. Also that worked as confirmation of the diagnosis for benefits etc as severe. And I had the mitochondrial test form Dr Myhill. But since getting my giant wedge of test results over the whole period from the GP they could have diagnosed me hypo and started levo trial. I was telling anyone that would listen that I had autoimmune issues in the family for two generations but hey who actually listens to the patient.
I am in a house that has/had mould and may also have to do Lyme testing so continuing to peel the onion of chronic illhealth diagnosis. But to have a brain again and be able to read a book. And I have a new really whizzy mobility scooter that is self folding with a boot hoist so way better.
So please read up on iodine on here as that is the glaring issue with Dr Myhills potions. Check out good quality supplements bought as separate items rather than mixes. And get your thyroid sorted first as advised re T3 I think. If you just throughly cover the thyroid and buy your own thyroid meds you can at least tick that off the list. When the list is too long you fall between the different issues and may not be optimum in each one. Be a detective!
If you add up the lower numbers in each reference range you were supplied with it shows that you need to produce a total of 29 nmol/L per day just to match the bottom of the ranges. To produce optimal levels you would need to produce 66.4 nmol/L of cortisol per day.
In fact you are only producing 26.2 nmol/L per day in total. I think you might be suffering from adrenal insufficiency/Addison's Disease.
I'm afraid I don't know the significance of your DHEA numbers. (I'm not a doctor.)
If you can make head or tail of it, you might find this of interest :
It tells you about every test that a hospital endocrinology department in the UK will do. It tells you about timing, preparation, fasting, interpretation, tests which must be done together etc. Do a search for Addison's, insufficiency, cortisol, DHEA and anything else you can think of that might be relevant and find out how it should be tested. Then you need to persuade someone that you need to be properly tested. And you will know how the test should be carried out and under what circumstances, and may be able to make a stab at interpreting them to some extent.
You might want to write an email (NOT a PM) to Louise Roberts who works for Thyroid UK (on weekdays, not weekends) and ask her for the list of good endocrinologists and doctors - some are private and some are NHS and some are both. They are names from members who liked who they were seeing and gave the name to Louise. They will be doctors who have some interest in the thyroid. Whether they are good at the adrenals or not, I couldn't say.
Thank you humanbean. I have been trying to interpret how bad my cortisol results were for a while but just couldn't trawl through all of the information and put it together like you have because of fatigue and brain fog. I'm very grateful to you for doing that. I can clearly see why I can't raise my thyroid medication now. No wonder if makes me feel more poorly.
WWhen I was first ill, I had the short synacthen test done and these were the results:
Cortisol 0' Basal - 315 nmol/L
Cortisol 30'Post - 621 nmol/L
At 30 minutes, an increase of serum cortisol by more than 200 nmol/L abive basal, to greater than 550 nmol/L excludes adrenal insufficiency.
So Addisons and adrenal insufficiency were excluded but again, looking at those results, I've read elesewhere that the basal number should at least double but mine didn't. So I've never been sure about whether I just about scraped through that test or whether these results genuinely were fine.
on page 68 - 70 it discusses the Short Synacthen Test. You should check to see if your test was carried out in the way that it describes. If it wasn't then the result could have been skewed. And another thing... You should have got your ACTH measured, but I have a feeling it is not done very often, but it should be.
Read up about adrenal insufficiency - it comes in various kinds - primary, secondary and tertiary.
So you could have secondary adrenal failure (for example) which is caused by a problem with the pituitary, rather than a problem with the adrenal glands.
If your ACTH wasn't measured, then I think (and I'm very unsure of my facts here, because I'm really not knowledgeable on the subject of the adrenals) that your test could never have diagnosed secondary adrenal failure even if you had it. If you have children, then you should look up Sheehan's Syndrome :
One of the things about any form of testing is that it is usually done in circumstances that are completely abnormal. What the doctor really needs to know is the results of testing that reflect, as well as possible, the normal circumstances the patient lives with.
When doing a Short Synacthen Test (SST) or other adrenal-related testing the patient should try to avoid unusual stresses before and during the test. So, if your adrenal glands can produce cortisol, but an unusually small amount, then going through great stress before the test could produce a result which is completely atypical for you. So, if you got up late, then got stuck in a traffic jam on the way to the hospital, then read an exciting book while you waited to be seen, or had a conversation with a complete stranger in the waiting room that you didn't want to talk to, your cortisol might end up appearing quite normal. But your usual output might be much lower.
When doing an SST, leave home in plenty of time to reduce the risk of worrying about being late. Move slowly and calmly to the waiting room. Speak as little as you can, sit in the waiting room, don't talk to anyone unless you absolutely have to, walk as if you are doing a relaxed stroll.
I will read the info in that link. My test was done a long time ago now but I have never forgotten that they were running late and it's really important to take readings at 9am (no later) and 30 mins later and I know for a fact that my first test wasnt done until around 9.30am. I also had a weird guy say next to me explaining how his pituitary tumour affected his sexual function! So my stress levels weren't ideal going into that test. Nothing was calm about the environment before I went in. Funny what you remember, isn t it?
I'm going to have a good look at that link and might see if my GP would consider referring me for another, bearing in mind my adrenal saliva results and the fact I'm having trouble raising my NDT dose, when I clearly need to.
Thank you humanbean for taking the time to put this info together for me. I really, really appreciate it and I'm going to try and use as much of it as I can, to ask myself for my next GP visit!
Yes, a big thank you for the email address of the contact at Thyroiduk. I will definitely email. Really grateful for your help with that and my cortisol results.
I agree with humanbean and think a far more in depth look at adrenals with a specialist would be a good place to start but I'm only just starting to read up on this stuff myself so can't really help direct. I know's there other tests such as ACTH/Aldosterone etc which can help determine the issue but also from what I've read so far, potassium and sodium levels are often unbalanced with these issued so may be worth while checking these out too - often in general kidney function tests. It is useful to have a google as there are many ways suggested to help fatigued adrenals on line - even down to caffeine and simple things and anything might help a little.
I would also add it seems the biggest increase in your cortisol levels at 4pm was after your 3.30pm T3 - is that right? Maybe it would be beneficial in adding a little more? However, I would also highlight that the cortisol saliva tests I have done have instructed not to take medications an hour before the test so if you took half an hour before, not sure if thyroid meds can skew results?????
Because you mention having so many supplements indicating possible continuing low nutritional levels and just to rule out the simplest things first, I just want to check if you are eating enough just because many people are unaware and many of us have fallen into bad habits, often just down to fatigue from other issues (especially if had such bad stomachs for decades with gluten intolerance etc). Sustained low calories will cause havoc on the adrenals glands over a long time period and this then can affect thyroid and so on plus it is hard to meet your nutritional requirements. Woman are supposed to get 2500 calories a day but I know many don't get anywhere near that. You really wouldn't want less than 1750 and certainly nothing less than 1500. My mum barely eats once a day and has similar issues.
If not quite eating enough, I would also suggest a proper ruling out of blood sugar levels as these can effect cortisol hugely too and I am wondering if anything to do with the very low 12pm cortisol one and the higher later one . Many GPs just test Hba1c for diabetes which is the average levels over a 2-3 month period and is not so good at seeing instability or huge swings in blood sugar and especially hypoglycemic episodes and then high etc. You could do a similar test throughout the day monitoring at set times using a cheap 3 day finger prick blood glucose monitor that diabetics use - you can pick them up for £15-£20 from pharmacies and see if the same pattern or if any major lows/highs. Might not be the case but worth double checking - my friend had this issue and resolving this has helped enormously by changing a few things and making glucose levels as stable as possible will help your adrenals anyway.
Basically, low nutrition and calories will cause stress to the body and higher levels of cortisol, which will then increase glucose production from stores and when these run out, messes with your adrenals further. Over a long period, this will lead to adrenal fatigue which will then stop conversion of T4 as it wants to slow your body down on purpose and basically you can just end up in one big loop of one affecting the other if that makes any sense at all lol
Thank you saggyuk for such a detailed reply. I agree that the adrenals are in the mix and are causing me grief too. I've never been able to work out whether my issue is primarily adrenal or thyroid. Over time, it has I suppose, become a mix of the two and trying to correct both is proving too difficult for me to tackle on my own.
I just posted my short synacthen test results above, in response to humanbean and I'm hoping that someone mught shed light on them. If not, I might post them separately at some point and ask what people make of them.
I'd say my calorie intake is adequate. It's not too low. I do better on a lower carb (although not too low), moderate protein, higher fat diet. I don't always adhere to this and my fatigue is much worse when my carbs are too high.
My GP did the hba1c test and I've had glucose tests done and all have been ok but as you say, they might not be catching the big swings.
My 3.30 dose of t3 is 3.30 am. It's a circadian dose, taken to support adrenal function as per Paul Robinson's protocol. It raises morning cortisol. I haven't had the adrenal saliva test repeated since I've been on the t3 but I can get out of bed much more easily now than I could before and so it has definitely perked up my adrenals. I actually feel fairly ok I too about 8am because of that dose of t3 at 3.30 am. Then I skimp again.
I'm not sure whether the slump is the t3 wearing off in respect of it helping my adrenals or my thyroid though. When I trialled T3 only for my daytime doses, I felt as though is been hit by a bus!
It seemed to strain my adrenals more than NDT. This leads me to conclude that my adrenals really are a major factor in all of this and could be more of a problem than my thyroid itself!
So, this is why I'm so very confused and am asking for as much help as I can on here xx
Yes, just saw you went gluten free further up. My adrenals were failing and had suspected addisons which made me feel terrible but this reversed after going GF and now they're too high so the opposite problem to you lol. It could be your adrenals were not able to reverse so easily and still going round in circles.
If the test was before you started taking T3 then it isn't much to do with it then I suppose.
Yes, double check glucose levels through the day as my friends hypoglycemia caused her massive problems and you mention feeling worse when having higher carbs. If they turn out to be unstable, there are many things you can do to help stabilise them like eating according to glycemic index and eating smaller meals more regularly. You mention probs with carbs but you still need them but some have less effect - so you can eat new potatoes instead of mash/jackets/roasts and basmati/wild rice instead of rice and also other great pseudo grains like quinoa. Protein and healthy fats are required so wouldn't worry about these too much or restrict them. You want at least about 2000 calories a day, certainly nothing much under 1750 as wer're all a little different.
Also def check potassium and sodium levels as these are very indicative of issues like addisons/cushings or other adrenal problems so might give you some further clues/evidence. For example, other indications of addisons is low aldosterone, high level of adrenocorticotrophic hormone (ACTH) , low level of glucose and positive adrenal antibodies (antibodies designed to attack the adrenal gland) along with low sodium and high potassium.
I know how you feel as I was unable to function and get out of bed many days for decades so I can certainly emphasise. Docs were useless and made me feel worse by saying it was all in my head etc. They help no one mostly lol!!!
Just take everything one step at a time and try everything and look into it all even it to rule out, correcting everything not optimal and hopefully, you'll figure it out
Ihave3kids I'm no expert but agree with Humanbean. You need to get your cortisol levels sorted.
If your adrenals are not working properly then your body will be unable to process any medications properly. Low cortisol will cause your metabolism to slow further making it harder for your body to process the medication. I had lowered cortisol levels, due to taking T4 only for 20 years, and it not doing me any good. T4 became toxic in my blood, causing CFS/Fibro/migraines. Stopping T4 stopped these symptoms.
I saw Dr P. And did the Adrenal tests. There are supplements that help boost the adrenals, which helped me to get mine back up an running. I'm reasonably fine now on T3 only, but do continue to take adrenal supplements.
Are you able to show your GP your results too show your low cortisol levels and perhaps ask for a referral to have them checked further? If not, please consider looking for another GP! There is no point persevering with one who is so stubbornly blind. TUK might be able to advise you of any 'better' GP's in your area.
Yes, UrsaP I must go back to the GP with these results. I had a very supportive GP in the early days but moved house and had to change surgery. I now dread going and avoid the GP at all costs. They seem to dismiss everything I say and make me feel like a bumbling idiot when I'm in there. You know, I can't think quickly like I once could and can never put a coherent argument together on the spot, which I find embarassing and frusrating.
I will gather my evidence together and put my case together at home this time. Then I am going to present this info to a different GP within the practice. I'm going to email the person that humanbean recommended at TUK and ask for a referral to an endo - if possible, one that has been recommended. I am near Birmingham and am centrally located within the country, meaning I have several different major hospitals within my region. I'm hoping a decent NHS endo might be (miraculously) working fairly nearby or at least within a couple of hours.
If a referral is refused, I may even have to find a private one. I can't afford this yet but after we have downsized and moved house, that should be possible. Can't believe this has cost me my teaching career and now my house. It sounds rather dramatic to say that and it hasn't happened all at once but over a decade, that is what it has cost me. *Silently weeps* Onwards and upwards though. Thank you for your advice. I can't really say how grateful I am for it and to know I'm not alone!!
Ihave3kids I do understand, it is not dramatic, it is the truth. Like you this condition also cost me my teaching career. Too many others have had to give up jobs and lost out on life chances because of it. You are definitely not alone. I understand the way you feel, when in with the GP too - I too have been there and suspect it is a common occurrence as DR's know we are in their surgery because we are feeling ill and low, and they often use that to talk down to us. How many of us have come out of appointments in floods of tears because no one believes us. No one will help us.
It does help to go in there knowing what you want and having good reason to ask for it. Give them no way to refuse if you can. Have a plan B, if they won't give you want you want how can they help you get it - i.e. referral or such and insist. When you have struggled for so long, it is about time you got a second opinion. And do know who you want to see.
If you ever get the chance, consider seeing Dr P, who I certainly accredit for my better health.
Absolutely agree with Saggyuk re food. I was so ill I was nauseous and not able to prepare food. It was all too much effort even to eat it. As I ate more protein regularly and got someone to prepare food for me my symptoms really changed. Also do get a glucose monitor as that helped me as well.
I wanted to add this. I think your antibodies are significant and may be indicative of root cause, primary hypothyroidism.
But it is a misconception and myth that secondary hypothyroidism is accompanied with low TSH, T4 and T3. Rather, TSH can be in range of low, normal, or slightly elevated. While T4/T3 can be low-low normal.
What matters is that treatment is the same, thyroid hormones to raise your T4/T3 levels.
Thank you Andyb1205. When I first became ill with a virus that seemingly triggered the ME/CFS, I had had a sore throat for 6 weeks previous to that; only it wasn't my throat (I now realise) but lower down - ie my thyroid.
I was also about 9 months post partum. I believe my thyroid swung between hyper and hypo after the births of my first two children. It then regulated itself. After the third child (I had 3 babies in 4 years), I seemed to perhaps swing hyper (I was never tired with 3 children aged 4, 2 and 1 - looking back, this wasn't normal) and then a couple of viruses in quick succession, the prolonged sore throat/thyroid plus swollen armpit lymph nodes (autoimmune attack?!?) and then bam - ME/CFS or as you say, the onset of autoimmune thyroid problems perhaps?!?
It helps me a great deal when people like yourself, are able to interpret my results in a meaningful way or can see something in them, that I can't.
As you say, whatever the cause or type of hypothyroidism, the treatment is still the same. Only I suppose if I know it's hashimotos, then I need to concentrate on keeping up a whole lifestyle consistent with reducing autoimmune issues.
As for the secondary hypothyroidism and reference ranges for TSH, I keep reading coflicting things. I read the TAG is usually very low and then I read that it doesn't have to be. So much info to ease through with brain fog. Uurgghh!!
There is lots of fantastic advice in this post and I really wish you good health. Worth investigating rT3 and also test for Iodine levels...Have you tried Adrenavive the-natural-choice.co.uk/Ad... ? ...to support your adrenals.
Yes, so much advice. I wish my brain was functioning better, so that I could fully absorb it but I'll read through this thread when I manage to find a quiet few minutes and will write down and look into every suggestion and recommendation. I'm overwhelmed by the response. You are the second person to mention Adrenavive and that will be one of the things in going to look at straight away. Thank you!
Yes, I do use aluminium cookware and my water is treated with fluoride. I take amitriptyline and melatonin but that's the only other medication I take. I have been seeing Dr M. I have never been tested for pernicious anaemia. I used to inject b12 daily at one point but I think it started to interfere with my sleep, so I cut back. Then my new GP cut my b12 prescription down to one injection per month. That's what I'm on currently. I also use a sublingual spray but probably not consistently enough.
Dr M does warn people about aluminium pans and fluoride in water. I have tried to follow most of her recommendations regarding diet and supplementation over the years but must admit, that I didn't follow the advice on fluoride in water and aluminium in pans etc.
When I was pregnant, I couldn't stand the smell of tap water and couldn't drink it. I wonder if that is the same scenario as the kittens and puppies with the aluminium. I could only drink bottled mineral water. Maybe I could sense the fluoride in it? Once I have birth, it no longer became an issue for me. I also went completely off caffeine when pregnant too but after, I was fine with it. Senses are heightened during pregnancy though and I suspect we can detect substances that are dangerous to the foetus, that usually we are unable to detect. So I absolutely understand that flouride and aluminium are dangerous and that animals can detect this.
TThis is an area I need to read more on and I'm completely unaware of the side effects of amitriptyline, I must admit. I took them out of desperation, after not sleeping hardly at all for 18 months. They do help me sleep but my sleep is not ideal.
Some people have managed to recover from low cortisol problems with the Circadian T3 Method (CT3M) which was invented by a man called Paul Robinson. He's written books on the subject, has a website, and also has a Facebook page (and possibly a private Facebook group).
I think he appears on Facebook more than anywhere else these days, but not having a Facebook account I can't tell you anything about what it contains.
That's what I follow humanbean. That's why I dose 12.5mcg of T3 at 3.30 am. I am able to get out of bed much more easily than before i started it. It really does work well. It helps to raise morning cortisol but because my midday is very low too, I think I still might need a bit of hydrocortisone added in.
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HYPOTHYROIDISM SECONDARY 
Secondary hypothyroidism 
