do not take levothyroxine tablets and tell your... - Thyroid UK

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do not take levothyroxine tablets and tell your doctor if you are suffering from untreated adrenal problems

rosetrees profile image
40 Replies

That's what it says in the patient leaflet for actavis 50mg Levo.

The big question - how do you KNOW if you are "suffering from untreated adrenal problems"????

I think that might be the next one to pose to my long suffering GP.

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rosetrees profile image
rosetrees
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40 Replies

I quoted from the patient leaflet in writing to my doc. I'm awating the outcome of a clinical meeting.

I also quoted it in my email to the GMC because it's a rare that doctors in general know anything about it.

Karispitit profile image
Karispitit

I read this when I took Actavis for the first time last week.Of course the other question is what is likely to happen then if you do take it when you have untreated adrenal problems.

Issy profile image
Issy

Docs or at least endos will test for adrenal failure with the short synacthen test. Not for lesser adrenal problems.

snowstorm profile image
snowstorm

Agreed. The only tests for adrenal problems are cortisol blood tests, long & short synatchen tests. Invariably they show nothing till it is too late and you have Addison's. Actually it happened to someone I know of - so proof. There are many tests for adrenal fatigue that cost nothing ; 7 day temperature chart (1st 2 before rising are for thyroid, rest for adrenals, Dr Wilson's questionnaire (on internet & in his book), eye sensitivity test, Raglan test & Romberg test. Saliva or hair tests, as we all know, are far more accurate than cortisol blood tests. If these test are done before medication for thyroid many many problems would not. It is beyond belief.

erfathyroid profile image
erfathyroid in reply to snowstorm

how does this look for adrenal. morning before rising. 37c......36.6. 36. 6. 36.6. 36.8. 36.8 36.8. 36.8. 36.6. great for 3. days. today 36.6. feel bad weak. increased from 3m.g n.d.t. to 31/4 m.g. 9 days ago. waiting for thyroid and iron blood test .

snowstorm profile image
snowstorm in reply to erfathyroid

Hello erfathyroid. To me it seems the variance is no that great. Mine varied from 34.2 to 36.5 etc though the first two in the morning did not have as much variance. There should be 2 temperatures taken in the morning before rising ; very first under the arm then by mouth. Do the other tests and see what you come with especially Dr Wilson's questionnaire. Sorry can't be more helpful. Had help from a nutritionalist which was excellent.

Nicola-Jane profile image
Nicola-Jane in reply to snowstorm

The only thing with doing a clinical assessment yourself is getting the endo to recognise and treat it! I have been on Levo for 10 years, just after giving birth to my youngest son who has special needs. I didn't have the time or energy to start looking into my illness more until last year and couldn't believe what I was finding. I am 99% sure I have adrenal fatigue, I failed all clinical assessments with Dr. Peatfield. I brought this up with my endo last week and he confirmed the worse, they would do the Synacthen test (which I'm having done on Friday) and would recognise Addison's/Cushings but would not rely on the 24hr saliva test (which I'm doing privately myself) and do not recognise adrenal 'fatigue', He did say if the Synacthen test showed low levels he would treat with HC (although I think I'd prefer to go down the natural route before trying HC), but I shall be banging down the door and shoving the saliva test under his nose if that comes back positive. I just hope it's not to late to get my adrenals back on track. I was t4 toxic last year and after 6 months of lowering the dose from 125 to 75 (and the toxic symptoms disappearing) he suggested upping the dose???! I politely refused.

snowstorm profile image
snowstorm in reply to Nicola-Jane

I too did a saliva test. NOT accepted of course. ALL the other tests I did pointed to adrenal problem. None of the bog std tests incl. both synatchens showed anything at all. Pardon for asking: what is HC?

Nicola-Jane profile image
Nicola-Jane in reply to snowstorm

Hydrocortisol I believe, to get the cortisol levels up I'm assuming? I haven't looked into it properly yet. The only thing I did read about it briefly is that you have to be very disciplined in taking it regularly otherwise it can cause a lot of damage...

S-JGB profile image
S-JGB

Hey I had a blood test to check by thyroid levels recently having been know borderline low since last summer. It appears I am now in the 'low' zone. I had a further blood test done more recently, whereby there a number of things including adrenals being checked (I don't know how from my blood but then that's why I'm a fipro not a med pro!). This is being done in order to 'rule out' anything that could be wrong beside my hypothyroidism. Why not ask your medical pro about this. Sorry that's all I know & hope it gives you a positive lead forward :-)

rosetrees profile image
rosetrees

I think most people are missing the irony in my original post. Yes, there are tests for adrenals. I paid for the Genova one myself before Christmas. But those of us on here who know these things are a tiny minority. The vast majority of patients would have absolutely no idea about which tests could/should be done.

The irony of the statement is this - how can you KNOW you have UNTREATED adrenal problems? Most people wouldn't even know what the symptoms are. And if DO have problems and they are untreated one would assume that you haven't been tested, otherwise you would be receiving treatment.

It is the single most ridiculous statement in medicine. But you have to think about what it is actually saying.

Nicola-Jane profile image
Nicola-Jane in reply to rosetrees

I completely agree. I didn't know until last year (see previous comment). When I was sat in the waiting area last week, waiting to see my endo, I said the same thing to my partner... how many of these people are like I was before last year? How many rely on their endo to make them better, while not realising they are becoming more and more ill as the years go by. I told my partner I was going to print a flyer with Thyroid UK and STTM details on and hand it out next time I'm there!

NBob profile image
NBob

This information is contained in Patient Information Leaflets, on the Internet at Drugs.com drugs.com/search.php?search... and also and more importantly in the British National Formulary.

This means that doctors should be aware of this information. This in turn means that doctors should test for adrenal sufficiency prior to prescribing levothyroxine. Failure to do so could lead to claims in negligence if harm is caused.

I am not aware of any NHS patient being prescribed levoythyroxine who has has their adrenal sufficiency tested either by short synacthen test or by salivary testing prior to being prescribed levothyroxine. When i asked my GP for one she said we just don't do it.

when I have my complaint about my Endo dealt with, I intend to submit a freedom of information request to my GP asking

1) how many patients who have levothyroxine on prescription had an adrenal sufficiency test prior to the decision to prescribe levothyroxine.

2) if so, what test was used e.g. Short synacthen test or salivary cortisol

3) how many patients the GP told about the risk that uncorrected adrenal insufficiency poses since thyroid hormones may precipitate an acute adrenal crisis by increasing the metabolic clearance of glucocorticoids" (drugs.com/pro/levothyroxine....

4)if they area aware of the salivary cortisol test carried out by Southampton University Medical School

it would be helpful if all members did the same to their GPs (there may be a charge though) and TUK correlated the results. .

The results can then be passed to the GMC or to Sir Bruce Keogh KBE, DSc, FRCS, FRCP NHS Medical Director for England

molliemdz profile image
molliemdz in reply to NBob

I think you're right. I can't imagine working up the courage to ask anyone in my GP's office for these things, though. I can barely convince them to do the required for my health, let alone to provide statistics on how they've been mistreating / misdiagnosing other patients as well.

NBob profile image
NBob in reply to molliemdz

Its dead easy,

start a letter in the normal way with your address in the top right corner

then the surgery's address below that on the left

then a banner in bold and underlined saying

Freedom of Information request.

just copy and paste the above questions in to a letter and post it to your surgery. Hey Presto - a Freedom of Information request.

the surgery can charge a fee but they have to tell you what the fee is and it must be reasonable, charged at £25/hour.

as is suspect that no adrenal testing has been done by NHS GPs, the answers should be easy to come up with and so should take the practice manager less than an hour to come up with the answers. I reckon no more than £12.50.

Over to you!

Nicola-Jane profile image
Nicola-Jane in reply to NBob

I was referred to my endo straight away so the GP has never really been involved with my diagnosis/treatment (apart from a phone call every 6 months to tell me what my tsh is!). Can the same be requested of the endo? He knows how bad I've felt over the last 10 years (getting worse every year) and he is finally giving me the Synacthen test on Friday (I'm having the 24hr saliva test done privately). I brought all the information to the table (adrenals, B12 etc.) and basically demanded the tests, but if I hadn't have done that he would have been happy to increase my t4 (despite t4 toxicity months ago!) and send me on my merry way.

shevlen profile image
shevlen

Rosetrees, I know exactly where you're coming from. It is a totally ludicrous instruction. However while it is Activis who trots out that breathtaking inanity in their patient info leaflet, Mercury Pharma put it a little differently.

"Special care with Levothyroxine is required if you: suffer from any condition which affects your adrenal glands (your doctor will advise you as you may require additional treatment).

Perhaps if enough people who are using Activis contact them and ask what their statement means, they might rephrase and issue a warning that might make some semblance of sense!!

sam1986 profile image
sam1986

Could adrenal fatigue cause bad hypothyroidism. My tsh was 100 and t4 4.4. Is that true hypothyroidism or could my adrenals cause that much destruction? What I find strange and touch wood it doesn't happen is, my hair is healthy, my nails are growing healthy I suppose the only major noticeable sign with me was pale skin, dark circles under my eyes and thyroid has swelled up. I've only been on levothyroxine a week and honestly I'm feeling the benefit already. Lost half a stone and my skin is actually glowing, dark circles have actually gone! Very strange indeed

rosetrees profile image
rosetrees in reply to sam1986

sam - I have no medical training at all and I'm new to all this. But it seems to me that the TSH test is fundamentally flawed. TSH is produced by the pituitary. I seriously doubt that my pituitary works well enough to produce that much TSH. Some people seem to have high TSH levels and be virtually symptom free. Some have much lower TSH levels and the whole range of symptoms.

It's great that you are improving. I know what you mean about the dark circles. I've had dark circles under my eyes all my adult life. Before Xmas last year, when I was so ill I literally couldn't function, I looked as if someone had thumped me in the face. The swelling has gone and my circles are much lighter.

sam1986 profile image
sam1986 in reply to rosetrees

I have dry skin on my hands now and oh my gosh I get very tired so easily but I think it's mind over matter sometimes with me as I was going the gym and doing 40 minutes cardio everyday before they caught it. It's only because I was losing no weight I got checked. I put the dark circles down to a newborn baby. Since I've been diagnosed I know I have to take it easy and rest when I can so I do feel more tired now. Guess I'm hoping this is just postpartum thydroitis and I want to give my body a fighting chance to recover. I'm not bothered about weight at the moment. Eating healthy and light exercise just for now. I'm focusing on maintaining weight then I can start losing once I'm better. I think the 7 pounds I've lost was water weight x

Thanks for posting this rosetrees. I couldn't agree more with you, the irony is breathtaking. We made reference to this in our response to the Scottish Parliament petitions committee and would have liked to have said more but politics must be played carefully ;-) It's definitely a negligence area if ever I saw one...

When I moved to a new endo after six very ill years with another, he said there was no point in testing my adrenals as the previous endo's tests would have shown if I had insufficiency. I said "What tests?" Other than TSH/T4, I'd had nothing tested, thyroid was removed and T4 was king, despite myriad awful symptoms.

PinkPalmTree profile image
PinkPalmTree

I've just had a look at the symptoms for adrenal problems and I have nearly all of them but also noticed that most of these are unpromising for hypothyroidism too. I go dizzy a lot if I don't it on a regular basis and wondered if it's hypoglycaemia (which is also a symptom). I had a blood test and it came back as 4 on a non fasting which I'm told is normal. Could this be adrenal problems? My TSH is high and my doctor is slowly putting my meds up but I don't feel any better.

AliciaM profile image
AliciaM in reply to PinkPalmTree

Hi PinkPalmTree

I have been suffering from adrenal insufficiency (diagnosed ME seven years ago)...had myriad of symptoms....eventually tried armour thyroid..made my symptoms worse...think my system has crashed so much I react to everything..building up slowly slowly with homeopathic and a little natural hydrocortisone...but my post is to say that there's a big relationship between cortisol and blood sugar control....when I can take a nat hydrocortisone I notice I don't have to eat all the time.....have read it somewhere but can't remember where.....have had fasting tests etc and nothing really showed up even though I literally can't function without eating all the time ( and I'm underweight!) _ an adrenal saliva test and Dr Mouton's 24 hr urine test showed underfunctioning adrenals and that am not converting enough T3...but problem is other doctors don't recognise these tests and I couldn't take the plethora of meds he prescribed plus I couldn't afford the 200 quid for each appmt!!

PinkPalmTree profile image
PinkPalmTree in reply to AliciaM

I don't think I've been tested for Cortisol. I will ask my doctor next week. He's tested everything else including T3. I'm not over weight my BMI is fine which most doctors find unusual for someone with a thyroid problem and PCOS.

Schenks profile image
Schenks

Blimey - untreated adrenal problem . . . says it all!

kimbo profile image
kimbo

I had a saliva test showing low adrenals but my gp won't do anything about it, says it all really they are not interested x

NBob profile image
NBob

to answer your question you dont know until you have been tested.

what shoud happen is that you go to your GP and tell him your signs & symptoms. Your GP should then think:

Hmm, these signs & symptoms could be adrenal insufficiency, low VitB12 or hypothyroidism or a combination of all 3.

I'll test for TSH T4 T3 Vit B12 iron ferritin (and the rest) and do a salivary cortisol test from Southampton University.

I need to ensure that the adrenal glands are working properly before I treat the thyroid gland because if the adreanl galnds are NOT working properly then levothyroxine may cause an adrenal crisis.

When/if the adrenal glands are woking properly I can treat the thyroid gland as there is no risk of adrenal crisis and some of the signs & symptoms may have abated, meaning that the dose of levothyroxine may be lower.

i can also give this patient a course of Vit B12 injections to help alleviate his/her signs & symptoms.

if do this, my patient is likely to regain his/her health fairly quickly and enjoy a fulfilling life.

I will also cover myself against my patient reporting me to the GMC for not providing good clinical care, not treating me as an individual and not acting on the best avaialble evidence.

but of course, we know that is not what happens.

rosetrees profile image
rosetrees in reply to NBob

Thank you NBob.

amandabaker profile image
amandabaker in reply to NBob

NBob I am now incredibly worried! My daughter's endo has put her on a trial course of Levothyroxine 50mcg and liothyronine 10mcg at our request as she is feeling so terrible with hypothyroid symptoms though with TSH of 2.73, T4 13.6, and T3 4.82. He has done this due to the USA revised TSH level of 0.4 to 2.5, and comments that some people don't feel well until their TSH level is between 1 and 2, and their T4 above the high range of 22. However, she has just had a saliva adrenal test which has come back positive for 'exhaustion stage' with total daily cortisol of 15.8 (21-41 range) and DHEA 0.23 (range 0.4 to 1.47) DHEA:Cortisol Ratio 1.42 (2.0 to 6.0). I am now worried that as she is on medication this could cause her to go into adrenal crisis! What do you think?

NBob profile image
NBob in reply to amandabaker

Hi amandabaker

the first thing for me to say is that I am not medically qualified so I cant give you any medical advice, just the benefit of my experience.

The next thing to say is don't worry!

The dose of levothyroxine you mention seems quite low to me so there is room for manoeuvre.

My girlfriend went to see Dr P and she also had reduced adrenal function. If I remember rightly, he suggested stopping the levothyroxine for couple of weeks. During that time, he prescribed Nutri Adrenal (natural adrenal compound) to build up the adrenal function. Some doctors may suggest a new formulation of Hydro Cortisol (synthetic cortisol) called Plenadren

drugs.com/uk/plenadren-hydr... specifically formulated for adrenal insufficiency mentioned on this forum to help restore adrenal function. After a suitable period of adrenal therapy I think Dr P suggested to my girlfriend that she resume levothyroxine while continuing the Nutri Adrenal for period.

Your doctor appears to be more enlightened than most so he may be amenable to adrenal therapy. I suggest speaking to your doctor asap as he seems to be one of the better ones.

I hope others on the forum can give you better advice.

amandabaker profile image
amandabaker in reply to NBob

Many thanks NBob! Thank you. I feel better, but will take your advice and talk to the endo again. Many thanks

mel848pink profile image
mel848pink

Exatly I went to the docter the other week and she said it would be a series of injections to checke the adrenals.I said to go private and she referred me straight away but not to a n.h.s consultant.She just goes by the t.s.h guildlines.My was high of 4.87 in january got checked again in march and it was 3.87 within the normal range of my hospital lab so will not do anymore about it.I so hope this petition of parliment gets in soon but probaly waiting another few years for that to happen in the n.h.s Really hacked of with it all.Docters don"t know everything.There hands are tyed to with cost cutting.

Minouchka profile image
Minouchka

Armour Thyroid is good yes- but each time i finished one batch and ordered a new one i seemed to be either better or worst. Each batch is different - that is the problem.

Trina profile image
Trina

Please advise on the types of Adrenal problems that it affects

Hansaplatz profile image
Hansaplatz

You can get a saliva adrenal test. I paid for one privately, it isn't done on the NHS. Problem is my GP didn't know what to make of it, deferred to my endo who 'doesn't believe in those' and so the endo more or less ignored the potential of adrenal issues.

The endo did do 24hr urine test for cortisol but that only shows overall levels across a day, not fluctuations within the day (so it missed what my private test showed, too low in morning and too high in evening) and since it didn't show either extreme of low cortisol Addison's or extreme high of Cushing's they didn't think adrenals relevant. So it's as much finding someone in the NHS who recognises adrenal issues that aren't at those 2 extremes.

NBob profile image
NBob in reply to Hansaplatz

UPDATE

The University of Southampton Medical School DOES DO a Salivary adrenal test on the NHS.

A GP can commission a test on a patients request from any willing provider providing that the testing organisation meets NHS standards CQC etc. I am sure that the University of Southampton Medical School meet all the requirements.

Hansaplatz profile image
Hansaplatz in reply to NBob

Oooh good to hear. Not sure if it'll be any help for my endo's, they shouldn't refuse it if it meets such requirements you'd think and yet it sounded like they are departmentally set in theirs ways. Might help convince my GP to know about that though, so thanks for mentioning.

NBob profile image
NBob in reply to Hansaplatz

Its only just come in so I don't know how it really works but I think that if a patient says " I want X test to the GP (or Endo), the GP has to request this from the Clinical Commissioning Group and provided the testing org meets the criteria the CCG has to commission the test. A bit odd as the Uni of S'hmptn was NHS prior to Any Willing Provider came in.

Endos do something similar but report to the NHS Trust or whatever its called this week. (Getting tired now)

Some doctors think that salivary testing is new but its been around for years. There is plenty of evidence to support its use on my memory stick but I cant put it on here yet.

Us patients need to stick up for ourselves and keep on prodding the doctors on to the right path. As with all professionals there will be resistance when lay people know more about their subject that they do but we need to apply the pressure (in the constructive assertive way) to achieve change.

On a different tack all together this whole thing about thyroid reminds me of George Orwel's 1984

Endo's do doublethink where they can hold 2 contradictory views at the same, and their Ignorance is their Strength, the likes of Drs S P and M commit thoughtcrime. the GMC hearing room in Manchester is Room 101.

HOWEVER, patient Knowledge is patient Power.

Time to watch telly I think

morgana1 profile image
morgana1

i do kknow i have adrenal problems but didnt know i shouldnt be taking levo.I have been on it for about 3 months, currently on 75mcg, and i must say i feel better; am also taking a health regime as suggested by the hair people so maybe this is helping my adrenals also. I must say that having got the test results back i was at a loss as to what to do to help put them right; they were telling me that lack of sleep is a major stressor for the adrenals and that i must at all costs get more sleep! If i could do that i wouldnt have have the energy problems i have, and have tried everything!

rosetrees profile image
rosetrees in reply to morgana1

As with everything, I can only speak from personal experience. I was taking 75mg of levo until the end of last week. Dr P advised me to stop for 10 days, but continue taking one tablet of nutri-thyroid, whilst at the same time build up adrenal support.

Today at lunch time I noticed I was going downhill rapidly. Rightly or wrongly,, I took the decision to take 50mg of levo and 1 extra Nutri thyroid. I noticed the difference after about 2 hours. I did this because, for the fist time in 6 months, I had arranged to visit a computer client who is half an hours drive from me. I wanted to go.

I don't think any of this is as simple (for some of us) as do take levo, don't take levo, etc. It's what works for you.

The Nutri adrenal is legitimately available as a health supplement. You must decide for yourself whether you feel you want to try it in addition to your levo.

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