I was diagnosed with Hashimoto's thyroiditis following the birth of my first child in 2002.
Since then I have only ever been treated with levothyroxine. I've been treated in the US, Australia and the UK. I can say without reservation that treatment in the UK has been below par at best.
My dose has dropped since I was first diagnosed from 150mcg to 100mcg but 2 months ago I halved it to 50mcg and started taking a combination of other supplements.
I had another underlying problem that had gone undiagnosed and untreated.
Long story short my adrenal function was severely compromised.
The symptoms overlap perfectly with low-active thyroid.
My T4 and TSH results were 'in range' so my GP wasn't interested in my ever-present symptoms - extreme fatigue (bed by 6.30pm) and an inability to lsoe any weight throughdiet and exercise. I felt as though I was dying on my feet.
A full panel of thyroid tests (that I had to pay for) revealed my T4-T3 conversion fine. Only my T4 was truly suppressed. TSH was well in range. If you check out "Thyroid Disease - The Facts" by Vanderpump and Tunbridge (BTA & BTF supported literature from the doctors) suppressed T4 in the absence of high TSH etc. points to NON-THYROIDAL illness. Although I have anti-thyroid peroxidase antibodies this got me thinking. I have a PhD in biotechnology and have worked in the durg industry so I decided to break the problems down separately. In my world if my immune system and thyroid were out of balance there was NO WAY other endocrine systems couldn't be involved.
So I temporarily abandoned my GP and went to see a Functional Practitioner. I had my adrenals tested, plus freeT3/T4 in urine. Surprise, surprise my adrenals are stuffed.
Every cortisol and DHEA measurement across 12 hours was below the minimum range. I've never 'failed' a test so badly!!!
Basically stress had done its job. And guess what - there's a little thing called the adrenal-thyroid axis - cortisol affects the thyroid. Understanding what's wrong is the first step in recovery. My next post will cover test results and the story they REALLY tell.
NOTE - if you're on levothyroxine and your doctor relies on measuring fT4 in serum only they're as likely measuring how much levothyroxine you're on vs what's really going on with your thyroid. AIt doesn't take a PhD to realise if you dissolve a teaspoon of salt in water then measure the concentration you'll measure how much salt you put in...
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skyfall
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I think it's basic knowledge that if you are hypo, your adrenals are probably stressed, so that really comes as no surprise. It even says in the PIL that comes with some thyroid hormone replacement treatments that adrenals should be addressed before the treatment is started.The problem is finding a doctor to test the adrenals and then treat them. Dr S and Dr P do treat them but they are expensive.
But what I would like to know is how your blood tests revealed that your conversion was fine. You don't mention an FT3 test. Would have been interesting to see the exact figures with ranges.
Actually, doctors usually go by TSH in the UK, rather than FT4, but we all know that that is not good practice. They haven't been properly trained to recognise symptoms or other thyroid measures. But as Rod said in an earlier post, it's an international problem. Nowhere in the world can you find first class thyroid treatment.
As far as I can see from the forum here it isn't anywhere near common knowledge for new thyroid (or even some establish) disease sufferers that adrenals could be a problem or that T4 measurement isn't a good guide. As I said in my original blog - test results tomorrow. Also it clearly depends which doctor you go to as to whether they look at TSH or not - my surgery has 6 doctors and only follows T4 for established sufferers. Five years ago I had to draw the feedback loops to explain to one of them why this made no sense; needless to say that made me quite unpopular... The purpose of the blog is to give a complete picture of what can happen if you end up in the same situation as me. As for the ROW treatment sorry but I can't agree. I had excellent treatment in Australia through the pubic medicare system. That's where, 4 years in after returning from the US, my GP tested for pernicious anaemia; and importantly referred me to a gastroenterologist.
I know everyone's experience is different. I'm sharing my story in case it resonates with others.
Really looking forward to seeing your test results skyfall. Yes, it is certainly well known that adrenals are often compromised in the scheme of things. Is it a chicken and egg situation though?
I had a strange but maybe true flow diagram drawn for me once: childhood sexual abuse leads to increased and permanent stress response (oh let's diagnose anxiety/depression) leads to long term drain on the adrenals (oh let's diagnose chronic fatigue) leads to eventual downregulating thyroid action (oh let's diagnose hypermobilty syndrome and fibro) leads to symptoms (oh let's not diagnose anything else).
P.S. Therapy made no difference to stress responses so maybe there is no helping some individuals? Although unpleasant I am psychologically 'comfortable' with the sexual abuse issue - it was over 40 years ago for goodness sake.
Trouble is now that thyroid function has been below par for over ten years (but still within range and without anti-bodies to help clarfiy) nothing is being done! Cortisol tests refused on the basis of 'normal' TFTs.
Unfortuantely, my very low ft4 (11.7) is being compensated for by over conversion to ft3 so I should, technically, be buzzing and endo is a very happy bunny! Should I really be the one to tell him that compensation is the body's way of trying to regulate a FAILING t4 output!
Look out though as having the lot tested privately inc, both antibodies as sometimes only 1 is elevated and not the other, rt3 and cortisol. Plus am pulling together the longest letter yet for my GP siting evidence for every symptom I have plus the mechanism by which they can all be accounted for via hypo rather than the mirad of other diagnoses.
It sounds like your test results mirror mine. I'm going to post them all today - have been monitoring them since last November across a change in therapy and it's those measurements over time that really reveal what seems to be going on...and yes - chicken and egg is right!
I have just read the 50 page report from the USA by those officials that create the endos guidelines and we really on a sticky wicket still (2012).
They have upgraded some guidelines (the nearer to a grade A then the stronger the recommendation) such as not to consider hypo with a low ft4 and high ft3 - just wait until the remaining active thyroid tissue is unable to cope and ft3 falls too with TSH still rising - then treat.
This is one example that has now been upgraded to A!
They are also continually worried that treating low ft4 with TSH in range can cause hyper far too easily - oh that's new - not!
And they persist with hypo diagnosis for those above 2.5 would be foolish as many with elevated TSH above thios number do not have any other symptoms. Which I do understand.
I have copied here though their comment on adrenal issues:
'Lastly, adrenal insufficiency, as previously noted in Disorders associated with hypothyroidism, may be associated with TSH elevations that are reversed with glucocorticoid replacement (54,55)'.
I suppose this means that if you get the adrenal results that show insufficiency then at least that would be a start and you could use this as very new evidence.
Thank you skyfall- much appreciated. I'm newly diagnosed with 'subclinical hypo' whatever that is - and I find posts such as this both interesting and empowering.
Hi Skyfall, thank you for raising awareness of adrenals.... I had glanced over info on them in the past but I really relate to the comments you are making on the ongoing symptoms you have had. I have had my cortisol levels checked in the past and was told they were in normal limits. Is there anything else that should be tested for adrenals????
I am own levothyroxine, B12 injections twice weekly, Vit D, Vit E, selenium, Vit C and L-aporic acid already as well as a gluten free diet!!!!!
From my experience, get your DHEA hormone levels checked as well - my cortisol levels weren't too bad but my DHEA was way too low and treating this was an important part of sorting out my low adrenals (now back to normal). My GP wouldn't help with this so I had to go privately - see the list of labs on the TUK website. For weak adrenals also keep to a low GI diet (ie avoid sugar, alcohol etc) as strongly varying blood sugar levels puts an additional strain on them.
Also re your supplements - have you had your iron levels checked as problems here could affect your thyroid performance?
I am interested to hear you were able to raise your DHEA levels and adrenals- how did you manage to do this and how long did ti take for them to recover? I have been trying every which way to address low DHEA other than having to supplement directly with DHEA in capsule form. Interested to hear how you have approached this?
I sorted out my adrenals generally by following all the guidance given by DrJames wilson in his book "Adrenal fatigue - the 21st century stress syndrome" - so a complete change of lifestyle for lower stress, regular rest and relaxation, a high protein diet with meals taken little and often and a low GI diet. I also supplemented with high dose vit C, B12, VIt E, rhodiola rosea and adrenal glandulars. (Nutri Adrenal). I also went diary and gluten free since I have immune system issues. I started this about 18 months ago, but bega to feel better within a couple of months.
I took DHEA as a supplement ( with guidance from Dr Myhill and Dr Peatfield). I began on 10mg/day, gradually increasing it to 25mg. I only needed to be on the DHEA for about 3 months to bring my levels back to normal. With me,. it really mad e a difference. I don't know how typical these recovery times are, but I've also had linked problems with my thyroid (now nearly back to normal), digestive system and immune system.
From Dr wilson's book I understand that an optional way to support the adrenals and increase DHEA levels is to use progesterone cream - it's the precursor to DHEA and several other hormones. DR P advised it for me, too, but I didn't start on it until after I'd come of the DHEA. I'm now using it as a general adrenal support and post-menopausal support.
Thanks Skyfall, this is very useful information - I think my adrenals are stuff - though haven't done the test and am on treatment for them with thyroid..... would like to know what stress test you did. I've also heard that if you are already taking steroids for adrenals the tests aren't as effective - perhaps with your expertise you could let me know if this is true? thanks C
This is interesting but I've given up on getting help. On a low dosage I'm tired and emotional, and on a higher dosage I'm irritable and angry. If I take any kind of vitamin supplement I get very depressed and anxious. I was diagnosed a few years ago with 'Dysthymia'.
Recently, I slightly increased my thyroxine and have developed a rash on both arms that won't go away.
For years, I suffered from anxiety and low self esteem issues due to sexual abuse by my dad. Although I got with life and had three children of my own, I always suffered from severe stress which might've brought on the thyroid problem. Since being on Thyroxine I don't seem to have an interest in many things that I previously enjoyed - I've been on thyroxine since 2006. I went on an anti depressant called 'Cymbalta (Duloxetine)' and this gave me the get up and go. I'm not on an anti depressant right now but I'm thinking of going back on as I've got low again.
This comment is all over the place as that's how things come out - I can't concentrate or think properly.
I also had the rash - it resolved but not because it was linked to thyroid - I'm getting onto hormone imbalances more broadly in upcoming posts. If I was a betting woman (I'm not!) I'd say you might want to start where I did and it wasn't by treating wither my thyroid or adrenals. Before I share that though I'd like to direct you to a symptom checker and see where your results come out. Would you like to do it? It's on an un-launched website (still in development) but I'd be interested to see the results. Let me know if you're interested. Nothing to lose. I was feeling exactly as you do - had been offered the anti-derpressants and sleeping pills and painkillers and all manner of other random prescriptions. In the end it came down to me. I wanted my life back. Get in touch if you like...
My experience is similar, Skyfall, I was diagnosed with ME/CFS, which may be the case, but the GP said that nothing could be done. After 3.5 years of floundering on my own I approached a nutritionist who predicted low adrenals as the core of the problemd. She also predicted secondary hypothyroidism arising from the low adrenals and digestive problems as a result of the low thyroid - all these proved to be the case when I had them tested. Having identified what was wrong we could then treat each of the issues in turn.
The NHS either couldn't or wouldn't help, so I had to do everything privately, but I'm 85% recovered (still some immune system issues to sort out).
I'm in the same position as you re my 'doctor' and am seriuosly contemplating going private as much as it pains me so, how much did going private cost you?
Thank you skyfall, I have recently been diagnosed with subclinical hypothyroidism and am trying to get the GP to help me find the cause of it so I can treat it properly. ALthough TSH is just under 10 she's willing to prescribe if I feel my symptoms are bad enough, but I want to know what is happening to me not just mask it with drugs (and I have no guage as to what is bad enough - I want to get well but not at any cost).
I have read that the medication for hypothyroidism can have a negative effect if you don't deal with adrenal function first but suspect my problem is nearly all adrenal due to my range of symptoms and if I can sort that out then the thyroid may come good again - is this possible?
This post has really helped as I'm back to doctor on thursday. this time armed with lots of information (last two times didn't really know what hypothyroidism was and not given any clue there were mutliple causes and solutions). Lots of that information is from this forum so thank you to all of you for sharing your knowledge and experiences. It helps so much!
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