Recently diagnosed with ME so on the journey... for about 8 years however I have been taking a low maintenance dose of thyroxin 50mg. Now, at the time i saw one expert who suggested i did not need this; but i continued - a second opinion suggested i did. So, i am wondering if by taking the thyroxin - perhaps- unnecessarily I may have unwittingly caused my ME... all my T4/TSH readings come out normal- which reassures me i need the maintenance dose... But... there is now a lot of smoke on this question for me and I am starting to think I should stop the thyroxin and see if i get better or worse... Does this quandary resonate with anyone in the know?
Could my thyroxin dose be causing my ME? - Thyroid UK
Could my thyroxin dose be causing my ME?
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Seadog66
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Seadog66,
Welcome to our forum.
I presume you mean you are medicating 50 mcg thyroxin.
And if a 50mcg thyroxin dose brings "normal" T4/TSH blood results, one must assume a deficiency might occur without. But what is "normal" ?
If you post results complete with ranges (numbers in brackets), members will comment and having FT4 and FT3 tested would give a wholly better picture of your actual thyroid function.
I think it's highly unlikely that your Thyroxine dosing has anything do with your ME diagnosis.
As radd pointed out, the members here can help you interpret thyroid function test (TFT) results, if you post them. At a dose of 50mcg, even if you were not deficient (without it), your body would simply reduce TSH (which stimulates your thyroid gland), which would reduce your own natural thyroid hormone output to create balance.
If you are still concerned, you could discuss stopping the Thyroxine with your doctor. After 6-8 weeks, your doctor should then perform a TFT to see how your body is coping without it.
Whilst everyone is different, it is generally agreed that Free T4 (fT4, free thyroxine) should be in the top third of the stated 'normal range' from your blood test results. For most people this should represent a TSH of 0.5 - 3.0.
Please also note that Thyroxine dosing should take into account both blood test results AND symptoms. Someone with hypothyroidism with a TSH of 2.5 might still have symptoms - in this case reducing the TSH to 0.5 - 1.0 would often resolve symptoms.
SlowDragonAmbassador
It may be you are not on high enough dose of Levothyroxine
50mcg is only a starter dose. Normally bloods are retested 6-8 weeks after each dose change. Levothyroxine dose is increased slowly in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have high thyroid antibodies
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
cks.nice.org.uk/hypothyroid...
Slow Dragon. Thank you again for the helpful feedback.
I have undertaken tests and it seems clear my dose of Thyroxin is too low. And all the replies seem to suggest that over dose of thyroxin is not likely to be causing CFS symptoms. However I would be interested in some further views on my results before I see my GP (Monday).
TSH 6.2 - seems very high
T4 14.3 - in range but towards the low end
T3 4.8 - in range
TPA - 117 - very high
B12 - 107 - in range
Folate - 11.6 in range
D - 72 - in range but towards the low end
CRP 2.7 - in range
Ferritin 212 - mid range
For a month or so - excluding a pretest window of 1 week - i was high dosing on B12 and D3 as well as Om3. My symptoms have been a little improved as a result. Om3 seems to help a lot!
Clearly I must increase my dose of thyroxin but:
1.How serious is the high TPA? - Hashimotos - should increased thyroxin resolve it?
2. Could these results be serious enough to be causing a problem with fatigue and in particular post exertional fatigue - physical or mental exertion? My job is mentally demanding involving legal work and complex problems and it is more so since so much of it moved from shuffling papers to darting around between applications on line at breakneck speed...
Not a plug for Medichecks but they were quick and efficient and i think i should have taken their tests earlier... The price - £125 with a drop-in visit to the local lab - was tolerable by UK private medical costs standards.
On Levothyroxine the aim is to increase the dose slowly in 25mcg steps until TSH is under 1.5 and FT4 towards top of range and FT3 at least half way in range
You have been very poorly treated and are extremely under medicated
See GP for prescription for 25mcg dose increase in Levothyroxine
Make sure to always stick to the same brand of Levothyroxine. (If you find it difficult to get 25mcg tablets can either take 50mcg one day and 100mcg the next. Or can cut a 50mcg tablet in half easily. Take 50mcg plus half tablet every day
Bloods should be retested again in 6-8 weeks. Likely to need further increases
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
cks.nice.org.uk/hypothyroid...
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 to be adequately treated on just Levothyroxine
sps.nhs.uk/wp-content/uploa...
Your vitamin levels are low BECAUSE you are under medicated on Levothyroxine and because you have Hashimoto's
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first just to rule it out
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
trying strictly gluten free diet for 3-6 months. If it helps stick with it. If no noticable improvement then reintroduce gluten and see if symptoms get worse
Vitamin D needs to be at least around 80nmol, but many of us find around 100nmol is better.
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
betterbones.com/bone-nutrit...
articles.mercola.com/sites/...
healthy-holistic-living.com...
articles.mercola.com/sites/...
betterbones.com/bone-nutrit...
Do NOT supplement any vitamin K if you take any blood thinning medication including aspirin
drsinatra.com/vitamin-k2-su...
Vitamin C and bones
healthimpactnews.com/2018/d...
B12 and folate. Recommended on here to supplement a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. B vitamins best taken in the morning after breakfast
B complex may be better than just B12
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Brill. You guys are so much help!!!
I'm not sure why you think you're taking a 'maintenance' dose of levo. To my knowledge, there's no such thing. Levo is not like taking a vitamine, where you do need an maintenance dose, to stop your level dropping again. With levo, you need to keep increasing until your symptoms have gone, and you feel well. And, the fact that you've now been 'diagnosed' with ME, suggests to me that you're not on that dose and your symptoms are still there. It's a 'diagnosis' doctors tend to hand out when they have no idea what's wrong with you. And, as they know next to nothing about thyroid, and nothing about hypo symptoms, it's not surprising that your doctor doesn't know what's wrong with you.
But, posting your results - with the ranges - will tell us more. I very much doubt that taking levo causes ME. I'm not even convinced that ME is a real thing. Levo neither causes, nor cures, anything. It's a thyroid hormone replacement - T4 - and you need to take it because your thyroid can no-longer make enough hormone to keep you well. But, if you don't take enough of it, it's not going to help much. And, 50 mcg is rarely enough for anyone.
All good food for thought and study thank you all.
If your main symptoms include things like lethargy, inability to concentrate, tired all the time it is likely due to too little thyroid hormone.
Aren't the above symptoms of ME too?
50 mcg of Levothyroxine is a low dose, and if you've been on it for more than a couple of months you likely need an increase anyway
What about free t3? T3 is the active hormone and much more important than TSH or free T4.
This might be of interest:
T3 and Chronic Fatigue
By John Lowe, MA, DC
Researchers believe that trigger points (TPs) form in areas of muscle where blood flow is impeded.1 A spasm can start the process by compressing arteries that course through muscle.2When the arteries are sufficiently compressed, muscle fibers fed by those arteries become deprived of at least three chemicals vital to the fibers' energy metabolism -- glucose, B vitamins and the thyroid hormone T3. Mitochondria inside the muscle fibers require all three of these to generate ATP, the energy packets that fuel muscle fiber functions. When ATP production drops below the critical level, the contractile filaments inside the muscle fibers lose their ability to lengthen (or relax). These filaments stay locked to one another, racheted into an extremely shortened state. This is called an "energy-deficiency contracture."3
When the spasm releases, arterial flow increases. If the fresh arterial blood contains enough glucose, B vitamins and T3, they can restore ATP production to normal. Energy becomes available to release the contractile filaments and relax the involved muscle fibers. But if the blood is deficient in any of these three chemicals, ATP producion will remain inadequate to fuel relaxation of the filaments.
Mitochondria float alongside the contractile filaments in the muscle fiber's fluid. Inside the mitochondria, T3 enables the transfer of energy from glucose to ATP molecules. Then the ATP travels to the contractile filaments and energizes their release.
If the mitochondria don't get enough T3 (or if the T3 is faulty), ATP production is stifled. A person's muscle fibers will contract properly, but under-fueled by too little ATP, the fibers won't completely relax. This energy-deficiency contracture leads to the other local pathophysiological changes that constitute TPs.
T3 inadequacy is usually a systemic phenomenon. It can, therefore, cause energy-deficiency contractures in muscles throughout a patient's body. His contractures are tender to palpation and may wildly refer pain or paresthesia when compressed. Noxious signals from these contractures stimulate the patient's reticular activating system, intensely arousing him. From this point, a complex set of interactions ensue. His arousal causes insomnia and shallow, non-restorative sleep. The sleep disturbance, combined with his ATP deficiency, weakens him and causes sustained fatigue. His ATP deficiency, combined with his arousal, causes constipation, and then spastic colon or irritable bowel syndrome. And the lack of T3 can desensitize the brain's adrenergic receptors, dulling their response to the neurotransmitter norepinephrine. This leaves him depressed.
It's noteworthy that most of the above symptoms are the same as those that get patients the diagnosis of fibromyalgia, or chronic fatigue syndrome.
Many classic hypothyroid patients develop secondary energy-deficiency contractures and TPs.4But I've observed other patients who first injure a muscle that later develops active TPs. As time passes and these patients suffer neverending somatogenic stress in the form of myofascial pain, they develop insomnia, fatigue, gastrointestinal dysfunction and depression. Some of these patients are dramatically relieved of this syndrome when treated with a T3 supplement, although T4 seems to be of no benefit (which I'll explain below). Because of these observations, I've come to suspect that these patients' somatic stress has induced an intracellular T3 deficiency. This deficiency, in turn, has produced and sustained the complex clinical picture they suffer from.
Most of the hormones produced by the thyroid cells are T4. An intracellular enzyme in other cells removes an iodine from T4 to produce T3, the more metabolically active hormone. When T3 gets inside the mitochondria, it enables the transfer of energy from glucose to ATP.
In theory, T4 is converted to T3 as cells require it. Because of this, many MDs treat hypothyroidism with synthetic T4 (such as Synthroid) believing that this will be converted to T3 as needed by the cells. This has provided us with the means to see what happens when the patient takes too large a dose of T4, and what is significant here in the antidote.
When the patient takes too much T4, his cells produce too much T3. This accelerates his metabolism to the point that he develops the symptoms of hyperthyroidism. The antidote -- block the body's conversion of T4 to T3. Glucocorticoids, when injected, do exactly that.5 They block the further conversion of T4 to T3, slowing the metabolic rate.
Noxious signals from TPs are transmitted into the CNS through types C and A delta fibers. Noxious input through these fibers constitutes severe physical stress -- so much so that the person is emotionalized and mobilized, presumably to remove the noxious stimulus.6,7,8 When myofascial patients are continually aroused in this way, they excrete an excess amount of stress hormones. This is evidenced by their higher than normal urine levels of adrenaline and noradrenaline.9 Noxious arousal of myofascial origin has also been shown to increase adrenal glucocorticoid secretion.10 And this may be the biochemical link to profound fatigue in many patients.
The endogenous glucocorticoid output may be sufficient to block the conversion of the patient's own T4 to T3. If so, his body's own stress-induced block causes a chronic T3 inadequacy. This may impair his energy metabolism enough in various tissues to produce the complex of symptoms termed "fibromyalgia."
My hypothesis about this mechanism implies simple, practical treatment: myofascial therapy for physical stress reduction and referral for T3 supplementation. This has dramatically relieved not only some patients' chronic fatigue, but also their G.I. and sleep disturbances, muscle pain, and depression. Only clinical trials will tell which myofascial patients respond to this treatment. I'm now arranging such trials. Hopefully, for the benefit of many myofascial patients, my past observations will be supported by the results.
References
1.Yunus, M.B., Kalyan-Raman, U.P., Kalyan-Raman, K. and Masi, A.T.: Pathologic changes in muscle in primary fibromyalgia syndrome. American Journal of Medicine, 81 (3A):41, September 29, 1986.
2.Lowe, J.C.: Spasm. Houston, McDowell Publishing Co., 1983, pp. 35-37.
3.Simons, D.G.: Myofascial trigger points: a need for understanding. Arch. Phys. Med. Rehabil. 62:99, March 1981.
4.Ramsey, I.: Thyroid Disease and Muscle Dysfunction. Chicago, Year Bood Medical Publishers, Inc., 1974, pp.126-127.
5.Physician's Desk Reference. 44th ed., Oradell, Medical Economics Cc., Inc., 1990, p.715.
6.Guyton, A.C. Textook of Medical Physiology, W.B. Saunders Co., 6th ed., 1981, pp.614-615.
7.Lowe, J.C.: The myofascial genesis of unpleasant thoughts and emotions: its neural basis. Digest of Chiropractic Economics, 31 (5):80, March/April, 1989.
8.Lowe, J.C.: The emotional effects of noxious myofascial stimulation. The American Chiropractor, 22-24, January, 1989.
9.Russell, I.J.: Is there a metabolic basis for the fibrositis syndrome? American Journal of Medicine, 81 (3A):50, September 29, 1986.
10.Evaskus, D.S. and Laskin, D.M.: a biochemical measure of stress in patients with myofascial pain-dysfunction syndrome. Journal of Dental Research, 51:1464-1466, 1972.
• in reply tothyr01d
Brilliant article, very helpful explaining WHY we need T3 (either directly or by conversion from T4). Thank you x
That could explain the connection with fibromyalgia too
Thank you again for this. I now know I have high TSH and TPA.
TSH 6.2 - seems very high
T4 14.3 - in range but towards the low end
T3 4.8 - in range
TPA - 117 - very high
B12 - 107 - in range
Folate - 11.6 in range
D - 72 - in range but towards the low end
CRP 2.7 - in range
Ferritin 212 - mid range
My T4 dose is obviously low but my T3 of 4.8 is well within range. The article of Dr. Lowe suggests T3 treatment may improve symptoms of CFS . But if my T3 is in range do you think that what Dr' Lowe reports may still be relevant for me?
Your FT3 is too low for someone on Levothyroxine
Though you look like you have pretty good conversion of FT3 from FT4....especially considering how ridiculously small a dose you are on
Getting dose of Levothyroxine optimal will likely transform you
Thank you. Nice to have a plan
SlowDragonAmbassador
If you are in the U.K. Would strongly recommend getting FULL private testing via Medichecks or Blue Horizon
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Low vitamin levels significantly affect Thyroid blood results.
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip as advised by knowledgeable thyroid specialist endocrinologists)
Many thanks to all.. an interesting article. Getting a full private check and will see what is suggests.
Thyroxine definitely won't have caused the ME, however, many people with ME/CFS have hypothyroidism and need treatment, she uses natural glandulars.
Please look at Dr Sarah Myhill's website. I have had 4 years of her expertise with a family family member who has followed her protocol to the letter and is all but recovered, with a bit more to be done (ie detoxing heavy metals) he's nearly back to full health.
She will ensure you get the right diagnosis, as ME is a collective term for symptoms only. Once discovered whatever needs correcting can be, it takes time but its achievable!
Very interesting thank you. Sort of shouts "detox! you doing know what you have until you do that" 
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