Thyroid UK
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Adrenal, t3,t4

Saw my consultant today having been really poorly the past few months which I thought was my CFS.

He now is sure this current episode is adrenal related and told me to stop t3 straight away and start increasing my t4 ..

I was on 50 t4

29 t3 x 2 a day

Now I will be on 100 t4 for 3 weeks

Then 125 week 4-5

Then 150 week 5 onwards.

Basically my adrenals need to heal and my symptoms are classic of struggling adrenals .

Has anyone else had this ?

I apologise if I’m vague but I went in my own and can’t remember the detail - I know huge error

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sianne

Is he going to do any adrenal tests? I would hope so if he thinks your problem is adrenal related.

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Not said anything .just another blood test in 4 weeks . I meant to ask about the other tests and forgot . Told my hubby he must come with me next time .

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I absolutely agree with what Nanaedake has written. If he suspects adrenals he should be doing some testing.

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Might visit the GP see what he says

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I think it's very strange that the Endo is stopping T3 but increasing levothyroxine. I thought it said on the Levothyroxine patient information leaflet that adrenal issues should be addressed before treating with levothyroxine LT4? How is stopping T3 and increasing LT4 going to help if adrenals are not treated? On what basis of evidence has the Endo proved it's adrenals causing the problem and has he/she offered any evidence of this and what treatment is being offered on the basis of the evidence?

If this were me, I would be concerned that some other condition or infection was being missed and not investigated properly if tests for adrenal function have not been thoroughly conducted. If tests haven't been conducted then it's purely conjecture on the part of the Endo.

Have you had all your vitamin levels tested? I would book a visit to your GP and express your concerns, ask for blood tests to exclude other problems and conditions. Could your Endo be using your current symptoms of poor health as an excuse to withdraw your T3 and reduce costs? From what you've said here, his/her reasoning and actions are illogical therefore it calls into question whether the decisions being made are in your best interests or for some other reason.

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Oh Lordy I wished I’d taken someone now. It was my endo who put me on t3 initially as I have a conversion issue.

He said my am cortisol was fairly low - 200 I think.

He is a huge believer in t3.

He listened to my heart

Did my pulse

Took my blood pressure sitting and standing

Wrote down my problems

He said I may need to go back on t3 later but for now he needed to see what happened with stopping T3.

He mentioned ? Chemical imbalance

I did say I felt my best when I was in 200 mgs of t40

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Ok, so some cortisol tests have been done? You've either got to trust your Endo's judgement and let him jigger about with your thyroid hormone to see if it helps or get a copy of all your results and make up your own mind. At least if you've got a copy of results you can discuss them sensibly with Endo.

Have you had your vitamin levels tested and if so, what were they? B12, folate, ferritin and vitamin D are the critical ones.

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He had an excellent reputation around where I live and was highly recommended . I’ve been seeing him just over 12 months .

All the tests you e mentioned have been tested and were ok .

I take prescribed Vit d 40000 per week

Vit b12 abs complex

On folic acid and folate levels and ferritin ok

I think I will discuss with gp and see if he will arrange other cortisol tests if not I will arrange myself .

Atkeast then I will have the info to hand . Although surprised endo didn’t suggest especially as it’s private

Thank you for your help

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When you say vitamin levels were ok, have you viewed the results? Doctors will often say ok if anywhere in range but bumping along the bottom of the range won't make us feel well.

If you are supplementing 40,000 iu of vitamin D weekly and your vitamin D level is less than 100 nmol/L (UK measurement) then you likely have an absorption problem. Has the Endo considered this and have you considered going gluten free? Also, are you taking the co-factors for vitamin D which are magnesium and K2-MK7 to aid effective utilisation and ensure vitamin D gets to bones rather than lining arteries?

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Gosh your really informative .

I am gluten free as advised by endo who diagnosed me with hashimotos last year

Cortisol wS 201 9am (166-507)

Vit d 137 (51-250 adequate)

Serum free T4 9.6 (12.0 - 22.0)

Serum TSH 0.01 ( 0.3 - 4.2 )

Serum free T3 3.7 (3.1 - 6.8)

ESR 2 (1.0 - 20.0)

Vit b12 618 (197.0 - 771.0)

Serum folate 19.7 (4.6 - 18.7)

Serum albumin 38 (35.0 -50.0)

Serum ferritin 224 (13.0 - 150.0)

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Serum free T3 3.7 (3.1 - 6.8) Were you taking T3 when these blood tests were done? If so your FT3 is very low. Have you got any coexisting conditions that could affect thyroid hormone utilisation?

Serum ferritin 224 (13.0 - 150.0) Has your Endo viewed this result and if so, what did he/she say? Your ferritin level is too high. Are you supplementing? If so, you need to stop. If not supplementing then you need to explore reasons for too high ferritin level. Have you had a full iron panel done?

Vitamin D level is fine so just take the co-factors and check again in 6 months time and adjust dose if necessary. You don't want levels to drop but neither do you want to go over range.

For full cortisol evaluation you need levels checked at various times in the day, not just morning but I don't know enough about it. You could post another question on this forum to ask specifically about cortisol testing as there are knowledgeable people here. There may also be some information on Thyroid UK's website.

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Hi The cause of Thyroid disorders is an auto immune problem. Realising I have had all the symptoms of an over active thyroid for sometime I have just been watching this series on youtube that might be of interest to you. Treating the underlying issues that are causing the autoimmune response using a holistic natural approach through diet, supplements, environment, lifestyle etc will correct thyroid problem without the use of medication, if you decide that's not the approach you want to take. I personally prefer the approach of finding and treating the cause, allowing health to be restored rather than having to depend on medication and deal also with side effects.

Betrayed Episode 8

All the other Episodes should be available on Youtube that will give you more insight into the causes of auto immune disorders and how to correct them.

Good Health

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Thank you .

I will look at the programme . Everything helps

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Not all thyroid problems are autoimmune, but it is the most common cause of hypothyroidism in the UK.

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Hi

I am really confused for you.

Could it be the low tsh he’s knee jerked at?

I agree in order of importance

Diet ( gluten free and I did dairy and sugar free too) Low carb too.

Absorbtion-

Your conversation is poor- it is the same for many people but a comprehensive stool analysis would show any issues like low stomach acid bad bacteria candida and low probiotics etc.

Vitamins

All need to be optimal- the others covered them

Then adrenals and thyroid.

For some people with poor diets and who eat gluten or have awful vitamin levels these can make a huge difference.

Taking away your t3 in your case will floor you!!! It’s v low anyway- I’d have thought an increase was a better move.

I swapped from t3 and t4 to ndt and swapped adrenal meds at the same time.

I’d had a full saliva test with 4 results and dhea which is massively important. One low reading is unreliable and will not correct itself.

As your t4 levels are poor you’re never going to convert that into t3 adrenals or not.

Personally I’d pay for a private test through regenerus. If you read Dr Sarah Myhill web page- search under adrenal gland the gear box it will explain everything you need to know.

Also under orchestra how to obtain good overall health.

A good cheap way is to monitor temps. A basal thermometer and take 4 readings per day. Your aim is 36.50 for your thyroid and an average with v little variation for your adrenals. If the variation is more than 0.3 there is an issue.

If you alter meds you do 8 for 4 days as per article. It was a huge help for me.

Natural is good in some instances. Sorry your results are poor so don’t believe that would cure your conditions.

Please do ask if you need more information.

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Hi siannie,

By analysing the tests results only, and that’s all I can do, unless you tell me what are your current symptoms because feeling ‘poorly’ can mean a lot of different things, I’d say your doc is trying to address what your tests results are showing: low T4 and low TSH. As for your high ferritin levels this can mean a number of things, including metabolic syndrome, menopause, restless leg syndrome, type 2 diabetes, rheumatoid arthritis, liver disease and hyperthyroidism, amongst other conditions.

High ferritin levels can cause fatigue and joint pains and can be related to inflammation . More common causes are obesity and daily alcohol intake.

The adrenal connection could be inferred if you had abnormal cortisol levels, which you don’t, unless you have had another tests. Have you?

I’m very interested in your case because I also have high ferritin, high vitamin B12, high vitamin D3 and crushing morning fatigue, joint pains, burning skin, tinnitus and chronic daily headache. My LDL, triglycerides and glucose are also slightly high what points to metabolic syndrome related to menopause but I’m being investigated for fibromyalgia and have already being diagnosed with carpal tunnel syndrome.

🤗

Chinchi X

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I have Hashimotos -

Current symptoms

Exhaustion with little exertion

Unable to stand for long without feeling faint /dizzy

Noises in ear

Pressure on chest

Have problems occasionally lifting /carrying things (normally when I feel a crash )

CFS

Breathless when walking - not all the time also occasionally whilst lying down

Swollen ankles

Blurred vision

Headaches

Mood swings

Unable to process information

Brain fog

Constipation

Dry mouth

Lack of concentration

Noise and light sensitivity

Hate crowds

Lack of confidence

Joint pains - when I’m crashing

Apparently my bp alters from sitting to standing so that’s why I feel dizzy and feel better lying prone .

My bp monitor flashes up irregular heart beat - I mentioned this but he said nothing other than he’s putting me on some pills which I looked up were for adrenal insufficiency and postural hypotension ??

I’m sure there’s more just can’t think at the moment .

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Thanks! It’s a lot to deal with. Where are you menopause wise? I’m asking because maybe there are a couple of things going on, besides thyroid issues. What’s your BMI? Have you put on weight recently? Do you feel you have fluid retention? Have you been tested for serum iron? Or just ferritin? What about kidney and liver tests? Creatinine, uric acid, liver enzymes?

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Nearly 60 on hrt patches and have been in hrt 20 years following full hysterectomy.

Been on folic acid for 3 months as my ferritin was high previously so they did a full iron tests .

Recently (since initially starting T3 lost a stone ) now fluctuate 2-3 lbs

U and e’ s all ok

Ankles always swollen

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Thanks. What’s the patches dose? Have you ever changed the dose? Do you have any menopause related symptoms? An excessive amount of oestrogen can cause swollen ankles and also mess with thyroid hormones.

Swollen ankles may also be venous insufficiency, liver or kidney problems, high blood pressure...

Do you take any other medication, besides the thyroid hormones and hrt?

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Was on 50 then upped to 75 beginning of the year as gp thought that’s why I was tired.

I’ve dropped myself down to 50 as I wondered if that was causing the swollen ankles .

I mr ruined it to endo back in April and he said thyroid related.

Take antihistamine

Vit d prescribed

Asthma meds

Then just supplements

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Maybe that increase in oestrogen could have actually triggered some of your symptoms, it’s a 50% increase, it can have huge impact on many levels and since you don’t need to take progesterone, it could have caused some imbalance in terms of neurotransmitters. Going back to 50, again a 50% decrease, could have added more effects to the mix. Hormones are very powerful and any fluctuations can trigger a lot of different symptoms.

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It’s all a nightmare . Just so much going on and to think of . I almost feel like stopping everything and see what happens - can’t feel any worse than I do now .

I’m not taking the steroids he’s prescribed - god knows what affect that will have or start .

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Don’t despair. And please don’t stop cold turkey any medication! That’s what probably causes many issues...

How was your perimenopause experience?

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Not aware of anything .

To be honest not sure why I had a hysterectomy other than chronic pain left hand side of my abdomen, heavy period and start of period ie day 1 and painful sex. Consultant said you’ve got 3 kids , hubby had a vasectomy and your in pain if I was you I’d go for hysterectomy !!

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Have you had your ovaries removed or just the uterus?

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Everything 😱

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Jeezzz, ok, were you put on HRT immediately after? And no symptoms such as hot flushes, foggy brain, mood swings, night sweats, joint pains?

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Hrt implant for 6 months then went onto gel . Took 9 months off in 2016 then endo told me to go back on it .

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Ok, have you noticed any symptoms when you took the 9 months off?

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Can’t say I did to be honest - but I’m not 100% sure . Can’t remembet what I did 2 days ago let alone 2 years 😱

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You’re not alone, I’m the same! I just remember my perimenopause symptoms because I’ve got suicidal!! 😱

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I was actually going through a tough time pre hysterectomy then post . Lost both parents within 3 years then split with ex twice eventually divorcing at 42 ! So I can relate to the suicidal bit — did try an overdose but luckily my daughter caught me before I managed to take more than 10 pills . Not a great period in my life

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We could be twins... by the time perimenopause hit me I had just lost my Mum, my job and my partner had been cheating me for 2 years... and then I lost my beloved 10 year old Labrador, she was my last friend in the world... now I have this little monster called Chinchilla (my avatar) who's driving me crazy... but it's the joy of my life.

We have survived! Sending hugs!

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Women do need progesterone - it's a fallacy that having no uterus means you don't need progesterone - you still have breasts and a brain.

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I agree, it works as a neurotransmitter but of course to achieve the right balance is the problem.

I was just saying that ‘in theory’ hysterectomised women don’t need progesterone to counteract the oestrogen effects on the endometrium.

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No ovaries means not enough progesterone

Progesterone lowers blood pressure

Progesterone is converted by the adrenal glands into all the stress hormones

Progesterone promotes calmness

Progesterone relieves water and sodium retention

All this only applies to real progesterone, not "fake" progestins. Your fat can produce oestrogen, but not progesterone so we probably replace the wrong thing

For other effects see collierdrug.com/do-women-ne...

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Thanks. CemCor in Canada advocates progesterone for menopause ailments.

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my neighbour had badly swollen ankles and high ferritin - turned out she had haemochromatosis.

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That is another possibility... and without an uterus and monthly bleeding the iron buildup is going to be faster.

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Iron shouldn't build up with or without monthly bleeding.

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Of course, I was referring to a woman with hemochromatosis...

a lot of the excess iron will go away with her monthly bleeding.

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That’s interesting - I read up about that - I really don’t want anything else

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If you have it, then the treatment is actually simple compared to other issues... decrease iron intake (meat, mainly) and vitamin C (which helps iron to be absorbed in the gut) and phlebotomy (bleed). I don't think I have this because I'm Brazilian and the prevalence of the hemochromatosis gene is low, but in European descendants it's considered high in genetic terms. If you have it you probably are a heterozygote, meaning you only have inherited one gene (from father or mother), and symptoms are milder.

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I’ve heard celts are prone to it - I’m welsh 😱 will discuss at my next appointment. Going to have a list as long as my arm when I see him at review 😃

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A list is of paramount importance ! Make sure you won’t sound hypochondriac or all you will get is an antidepressant prescription 😁

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Oh yes - been there and done that one . I refused them - I said I’m not depressed - I’m sick of feeling sick and getting no where !

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Definitely twins! I have a Venlafaxine box unopened 🙄

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What are they

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Antidepressants

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Ummmm you going to take them then. Do you think your ready for them yet ?

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Not yet, but if things don’t improve and those weird intrusive thoughts appear again, I might try them.

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Oh deffo - there are plenty on these forums to support us all at low times . Boy do we have low times too.

Stay strong. But take the pills -they will help get you through a difficult time .

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Thanks cariad, I’m already taking Traumeel (German phytotherapy for joint/muscle pain, 15 different plants), carisoprodol+piracetam+Mg+tryptophan (Rheumatologist prescription) .

Just didn’t want to put ad in the already complex mix!

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Totally get that - every drug we take interacts with another usually causing another issue . It’s too easy to give you pills than sort the problem .

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Exactly! I don’t want to end up with more symptoms caused by the drugs! Speaking of which... are you taking 4,000 or 40,000 IU of vitamin D3?

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20000 iug in the summer

40000 iug in the winter

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I think that’s too much... I’ve been reading that an overdose of D3 can cause a lot of symptoms and many are similar to what you’re experiencing... the blood levels don’t always show what is going on inside the cells. If you are interested I can PM you some links (all scientific articles).

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Yes that would be useful . Thank you.

We presume that these specialists know what they are talking about so take what they tell us too

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I will send you later.

Yes, biological science is complex and not an exact one. There’s too much information available and it keeps changing so it’s impossible for ‘specialists’ to keep up with everything. That’s why most treatments and medication are based on studies that have a great number of subjects or have data from a long period of time.

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Well, looking at your blood test results, I would say you've been feeling bad because your FT3 was too low.

How do you take your T3? Do you take it on an empty stomach, etc. just like levo?

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Yes always on a an empty stomach .

I was taking 1 with my Levo

Then another in the afternoon .

Going to get a saliva test to get the full picture re cortisol

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Good idea! :)

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Sorry, I’m not sure I understand... why do you say her FT3 is too low when it’s within range and ignore her FT4 and TSH which are clearly below normal range?

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She is taking T3 so you'd expect high in range free T3 and low to middle range free t4 - since all Ft4 does, as far as we know, is convert to t3, if you are a poor converter, low T4 doesn't really matter. TSH is largely irrelevant when on meds as, in most people, the feedback loop between hypothalamus, pituitary and thyroid seems to be broken. So free t3, the active hormone, is the most important result. She might be better with higher free t4 as well, but that's a very individual thing. The ranges and tests were developed for people on levo only.

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Just 'in-range' is not good enough. It's where in the range the result falls. So, as the OP us still having symptoms, it's obvious that her FT3 is not high enough for her - it is very low. Be very wary of a doctor that tells you you are fine because your results are all 'in-range'!

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Thanks, I’m no expert in thyroid issues. I just find it odd that the ‘normal range’ means very little to nothing these days. It seems that patients are more knowledgeable than doctors and scientists... that shows how bad the medical situation is! Thanks for the explanation!

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No, we're not more knowledgeable than scientists, those that do the research - but more than doctors, certainly - it's just that doctors don't listen to scientists.

What is odd is that, for the most part, the ranges are far too wide, due to the way they were developed - there's no guarantee that all people with thyroid problems were excluded from the test group. But I couldn't begin to explain the process to you, although it has been discussed on here before. :)

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I would want that high ferritin looked into. Could just be a lot of inflammation (from what?) but could be liver problems. Shouldn't be ignored

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I did mention that but he didn’t say anything - he was focussing on my current symptoms . I did mean to mention it to him . Will make a note to discuss next time

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Have a look here potsuk.org/symptoms and see if it rings a bell!

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That’s me !!!!

I think that’s what he was giving me the pills for but I don’t want to take them as they are steroids .

Will print it off though and show it to my GP next time .

Thanks for the info

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You’re welcome. I sincerely hope you get a diagnosis (just one!!) in order to get this addressed asap.

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Thank you - me too

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Oh and if you need the steroids you have to take them. I know they mess up with our body but if this is caused by your immune system it’s better not to let things go wild.

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My sister (ex ITU sister ) just said exactly the same to me 😳

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That’s what meds (and sisters) are for 😁

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😛😛

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Hi Siannie,

I have been diagnosed with POTS recently after having standing up problems. Its a tilt table test (done properly, it should be tilted to upright position to mimic the standing problem you have. I only say this as two students did my first test and didnt tilt me much. When I asked why not, they said because I might faint and they didnt want that! Idiots! The drugs given for this condition can cause a lot of problems which I do not want on top of thyroid, adrenal issues, M.E and Fybro . My POTS man advised me to always keep hydrated, carry water with me when out and also a pot of Himalayan Salt. This is what I do. It doesnt stop the POTS but it does buy me a few minutes more. Without, I have only 1 minute of standing in one spot ability. I have since learnt that adrenal issues cause hypotension problems too . . . . lots of overlaps.

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Thank you for the info.

What problems do the meds cause ??

I am meant to take 3 tablets a week and tr it’s how I feel each day .

My sister ex nurse says I should do as he says as it’s not a huge dose .

I’m like you so many issues going on just worried what is around the corner!

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I recommend you look up what beta blockers, SSRI's and Florinef do and think carefully before just taking any of these. In my experience Drs don't warn you of the adverse effects and are prescription happy. Most drugs cause nutrient depletion and as you have thyroid problems, this is far from ideal. Your Dr is unlikely to admit to that. I am not advising either way, just sharing with you my own experience, I was kept on two medications for many years that I was told would be forever medication but having come off them and getting my vitamin levels up, many of my symptoms are either improving or disappearing. I had 98 originally and now down to 47. If you do have POTS, there is no cure for it currently, only medications that may help with some of the symptoms as well as give you more problems but every individual will vary.

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Quick update to my post .

I’ve now been off T4 since July 31st .

As yet not started the fludricortisine ( pharmacy issues ). I’m having a tooth extracted Friday so will start them next week.

I’m still on 100 Levo which I will increase to 125 end if next week and then increase to 150 the week after .

I can’t believe how much better I feel . Don’t get me wrong I still can’t rush in a morning, I still get completely exhausted if I do too much (maybe pacing helping ). But overall generally my mood had improved, I’m managing to do more (not a lot) but a little. I’m not had the terrible feeling of my whole body shutting down.

So far so good .

In the negative side - I’m putting on the weight again !!!!

I don’t believe it was all down to the T3 but maybe too much T3 (40mcgs) day . I will discuss this with him at my next appointment. I think someone here suggested maybe I should have increased the T4 not the T3 ie 100 t4 and 20 T3 .

I’m not kidding myself that I’m going to feel like this for long but at the moment I’m enjoying a little of what it’s like to be fairly normal .

See the endo sept 14 - keep you posted 😃

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