SPOTLIGHT ON : Living with EM and Hypothyroidism

General Articles and Research
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Dear Members,

Our ‘Spotlight On’ this month features hypothyroidism.

EM related research suggests that many EM sufferers either present extant hypothyroidism ( developed many years prior to EM) , get diagnosed as hypothyroid (around the same time as EM symptoms) , or develop future hypothyroidism.

“Hypothyroidism occurs when you produce insufficient amounts of thyroid hormone or when you have thyroid hormone resistance. As a result, your body cannot maintain normal metabolism, and your ability to convert tyrosine to dopamine, norepinephrine and epinephrine is impaired. This can cause a ripple effect of symptoms”

No research actually investigates this finding. But we have pieced together a few articles to kick - start our discussion. Immune, endocrine, molecular (sodium channels), and nervous system (autonomic dysfunction/ central sensitisation), as well as co-existing medical conditions, side effects from other medications and mere co-incidence are amongst schools of thought.

The mod team hope this makes for an interesting and insightful discussion.

(1) How does living with hypothyroidism and EM affect you?

(2) Why do you think many EM’ers are hypothyroid or thyroid hormone resistant?

(3) Is hypothyroidism a cause or effect of EM?

Quick facts:

  • Research on the mechanism of chronic pain in burning mouth syndrome (BMS) underpin immune-endocrine system substantially involved, and may have a key role, Immune function was significantly and specifically suppressed in BMS, although the hypothalamic-pituitary-adrenal axis and sympathetic nervous system were predominantly activated by psychological stress that was not specific to BMS. http://www.ncbi.nlm.nih.gov/pubmed/24398391?dopt=Abstract
  • Burning feet syndrome. Most sufferers were hypothyroid http://www.ncbi.nlm.nih.gov/pubmed/14708150
  • Many autoimmune disorders increase the risk for hypothyroidism. Type 1 (insulin-dependent) diabetes ,systemic lupus erythematosus, pernicious anaemia, and rheumatoid arthritis
  • Perimenopause/menopause .Women over 50 are susceptible to thyroid problems.http://www.thyroid.org/
  • Interestingly for EM’ers some patients treated for hypothyroidism have symptoms and findings compatible with small-fiber neuropathy or "hyper phenomena" indicating central sensitization.http://www.painjournalonline.com/article/S0304-3959(10)00584-1/fulltext http://www.ncbi.nlm.nih.gov/pubmed/16966538
  • Hypothyroidism frequently found in chronic urticaria – otherwise known as heat allergy (we call it EM), and associated to autoimmunity. http://www.medscape.com/viewarticle/815273_2 http://www.medicaljournals.se/acta/content/?doi=10.2340/00015555-0244&html=1
  • Threshold of pain perception to heat decreased in hypothyroid rats. Synaptic transmission ( firing of neurons – pain receptors) alteredhttp://www.molecularpain.com/content/pdf/1744-8069-10-38.pdf
  • Thyroid hormone regulates voltage‐gated sodium currents and modifies action potentials books.google.co.uk/books?isbn=110920576
  • Autonomic dysfunction – dysautonomia - increased incidence of hypothyroidism, or low thyroid function in EM patients.
  • Hypothesis that inadequate thyroid hormone regulation may be one of the primary underlying factors in many patients with fibromyalgia. Most fibromyalgia patients are either hypothyroid or thyroid hormone resistant.http://thyroid.about.com/cs/fibromyalgiacfs/a/fibrothyroid.htm
  • Endocrine disorder- as in secondary Raynaud’s hormone imbalance .Thyroid requires iodine to produce its hormones and to regulate the body’s metabolism. The simple mineral iodine is like an internal heater. Iodine deficiency causes a loss of myelination of peripheral and central nervous system tissues. A lack of iodine also means the person cannot myelinate their nerves because they cannot access the ketogenic pathway
  • Hypothyroidism = low metabolic rate. Animal research points to slower synaptic transmission, which, in theory, should slow pain signals. Sodium channel blockers based on this premise.
  • Autoimmune disorder Hashimoto’s thyroiditis http://www.nytimes.com/health/guides/disease/chronic-thyroiditis-hashimotos-disease/print.html
  • Numerous medical conditions can involve the thyroid and change the normal gland tissue so that it no longer produces enough thyroid hormone e.g. scleroderma, and amyloidosis
  • Drugs and medical treatments can affect thyroid levels e.g. antiarrhythmic, antiepileptic, cancer, some antidepressants.
  • Hypothyroidism extremely common. From 10 to 40 percent of Americans have suboptimal thyroid function






Here a few of the most common symptoms of hypothyroidism:

Nervousness and tremor

Mental fogginess and poor concentration

Menstrual changes

Feeling bloated

Racing heartbeat

Aches and pains

Weight gain

High cholesterol levels

Heat intolerance

Feeling cold.

Hair loss/dry skin - Hair, eyes and other mucous membranes

Fatigue- If you do not have enough dopamine or have too few dopamine receptors due to inadequate thyroid hormone regulation, you end up with extreme fatigue, which is also a common complaint in fibromyalgia patients

Excess muscle tension and trigger points—For muscles to completely relax, filaments must lengthen and separate, which requires energy (ATP molecules). Low thyroid hormone reduces ATP.Delayed deep tendon reflexes (slow relaxation phase of the Achilles reflex)—Thyroid hormone controls gene transcription for calcium ATPase. When you hit the Achilles tendon and your foot goes down rapidly and then raises back slowly, it’s a sign of hypothyroidism or thyroid hormone resistance. This is due to lack of ATP molecules to provide the energy for the contractual filaments to separate and relax; hence you get a visibly slow relaxation phase of the Achilles reflex.

Hypothyroidism is separated into either overt or subclinical disease- Diagnosis is determined on the basis of the TSH laboratory blood tests. The normal range of TSH concentration falls between 0.45 - 4.5 mU/L.Patients with mildly underactive (subclinical) thyroid have TSH levels of 4.5 - 10mU/L are not treated as, blood tests for T4 are still normal Patients with levels greater than 10mU/L are considered to have overt hypothyroidism and treated with medication.

221-174480691038.pdf (732 KB) 222-JNeurolNeurosurgPsychiatry2000Duyff7505.pdf (197 KB) 223-279.full.pdf (154 KB)
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224-JNeurolNeurosurgPsychiatry1987Nemni145460.pdf (2.98 MB) 226-ClevelandClinicJournalofMedicine2009TAVEE297305.pdf (323 KB)
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This is a very interesting topic, Mads. Thanks for spotlighting it!

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Hey, shout out to all the mod team who work hard to produce LWE spotlight on's. Its not just moi ;)

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Many thanks to Nel, Alina, and Laura, then, too. :)

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So many interesting articles. Where To begin!
One interesting tidbit. Quite a few years ago I was diagnosed as hypothyroid and put on synthroid. Shortly after my endocrinologist passed away. I saw his replacement and he told me I wasn’t and I didn’t need meds or to be seen again. Strange … Has anyone else experienced anything like this? Upon further research I discovered some doctors believe a higher low number can still make you symptomatic and treat what they call borderline hypothyroid others don’t and dismiss it. It’s been so long ago and it was when I first started having symptoms and I have many more than just EM . I can’t remember if I saw any improvement in my short time on thyroid meds.
Take care,
Alina

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Subclinical hypo really is such a recurrent theme in EM. While screening patients for thyroid disease, Dr's often find increased thyrotropin-stimulating hormone (TSH) levels in patients whose free thyroxine (T4) levels are not below normal. This borderline 'subclinical hypothyroidism' is most commonly an early stage of hypothyroidism. Although the condition may resolve or remain unchanged overt hypothyroidism develops in a lot of patients- ie: low free T4 levels as well as a raised TSH level. The likelihood that this will happen increases with greater TSH elevations and detectable antithyroid antibodies.As patients with subclinical hypothyroidism sometimes have subtle hypothyroid symptoms and may have mild abnormalities of serum lipoproteins and cardiac function, it is thought best by many medics that patients with definite and persistent TSH elevation should only be considered for thyroid treatment.

Getting back to the apparent prevalence of subclinical hypothyroidism in EM'ers. I truly believe that clinical suspicion of hypothyroidism may be delayed or overlooked because symptoms such as fatigue and other early manifestations of thyroid failure are attributed differentially.Or because a lot of us still have normal levels of thyroid hormone, whether measured as free thyroxine (T4) or free T4 index ,yet elevated serum TSH levels. As we know trying to manage EM is pretty much like searching in the dark, we are feeling our way through.To be proactive, I would argue that if we test a couple of times with elevated serum TSH - regardless - we should be treated.

An interesting point I wish to share is that since being on sodium channel blockers - ie: slowing down synaptic transmission - slowing metabolic rate etc.. my hypothyroidism is worsening thus necessitating increments in thyroxine.

I thought the Achilles reflex was EM related - seems it could be thyroid related......... fascinating!

Just read a book on power of self healing. Could our bodies go into survival mode causing our TSH levels to fall thus slowing synaptic transmission- decreasing pain?.

In my opinion EM causes thyroid dysfunction and its part of the syndrome.

God bless

x

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I am going to have to put aside a few hours to look at all these links. It is going to be interesting to get an idea of how many of us are dealing with fluctuating thyroid levels on top of everything else.

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This sure is fascinating stuff. Just hate we are all suffering so much. I hope our 'Spotlights On' slowly bring us a new insight - even a new angle on this wicked syndrome.- TEA survey states approx 25% EM'ers have thyroid disease (66% response rate) . My research puts that much higher - more around 50% actually diagnosed as hypothyroid and on medication - let alone subclinical. Massive problem as David points out with differential or co-existing diagnoses .I still feel that if an EM'ers TSH is elevated after 2 tests 6-8 weeks apart medication ought to be tried - even at a lowest dose. As we know all EM treatment is trial/error so add thyroxine to the mix.

God bless

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Great article on thyroid connections in numerous parts of body

http://hypothyroidmom.com/the-thyroid-is-connected-to-so-many-parts...

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Great new article on thyroid (Jan 2015)

http://www.medscape.com/viewarticle/838458?src=wnl_edit_tpal&uac=222157BT

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Everyone who takes a PPI should read this. They can affect your thyroid.

http://www.ourmidland.com/…/article_07827258-1cbe-56de-9bb2…

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Thank you for posting this mads. It explains a lot to me about why my levels have jumped around during the 30 odd years since I had my thyroid removed. I have been accused of over or under medicating of thyroxine by doctors when the answer lay in the other medications they were orescribing. It is so hard though to take thyroxine a whole hour before food or tea/coffee first thing in the morning and would have been almost impossible when I was working:(.
Definitely printing this one out to show the GP.

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Endocrine societies at odds over use of T3 when T4 (what we are usually given for hypothyroidism) unsatisfactory.

http://www.medscape.com/viewarticle/839878?src=wnl_edit_tpal&uac=222157BT

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Back when I was 9 years old, maybe 10, I had this heat intolerance... my hands turned red and extremely hot, no sweat at all, as soon as I went to a cooler place, the redness and burning sensation would stop. (Sorry if my english suck)... I've spent my life trying to be as cool as possible (temperature, haha) if I'm not super cold then I'm super red... 3 years ago, I was diagnosed with Hyperthyroidism, and my doctor assumed that my heat intolerance was another symptom of this annoying thing. So, she gave me Iodine 131, I lost my thyroid gland, and started on treatment for life (This leaves you with hypothyroidism). After this, my heat thing got extremely worse, I can't sleep because just the little heat that my own body produces while lying down on my bed, makes my hands go red and hot and burning, then my ears, my cheeks, my nose, then my feet and so I feel so bad and dazed and sad and burning, like my blood is on fire... I sleep with ice on my bed. Tomorrow I have an appointment with a new doctor, sooooo, I hope he can help me. :)

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Ice never helps, by the way. But if I don't try I cry!

sharitypopo said:

Back when I was 9 years old, maybe 10, I had this heat intolerance... my hands turned red and extremely hot, no sweat at all, as soon as I went to a cooler place, the redness and burning sensation would stop. (Sorry if my english suck)... I've spent my life trying to be as cool as possible (temperature, haha) if I'm not super cold then I'm super red... 3 years ago, I was diagnosed with Hyperthyroidism, and my doctor assumed that my heat intolerance was another symptom of this annoying thing. So, she gave me Iodine 131, I lost my thyroid gland, and started on treatment for life (This leaves you with hypothyroidism). After this, my heat thing got extremely worse, I can't sleep because just the little heat that my own body produces while lying down on my bed, makes my hands go red and hot and burning, then my ears, my cheeks, my nose, then my feet and so I feel so bad and dazed and sad and burning, like my blood is on fire... I sleep with ice on my bed. Tomorrow I have an appointment with a new doctor, sooooo, I hope he can help me. :)

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Good luck and please let us know how the doctor appointment goes sharitypopo.

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Good article on thyroid diseases

http://hypothyroidmom.com/skin-signs-of-thyroid-disease/

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Fascinating! The number of doctors who have thought I had a thyroid problem is incredible right back to the 70s, including a friend who has been diagsnosed! However everytime it’s checked they say it’s normal, except for once many years ago when a doctoro mistook my Oruvail (ketoprofen) for the contraceptive pill! He said it’s normal for someone who is on the pill and that was the end of it even though I corrected him and said it wasn’t the pill, there would have been no point as I couldn’t have children as I had a hysterectomy when I was young! That was the begining of my lack of trust in doctors.

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I'm very interested in this new field of Looking at Hypothyroidisn. I'm due to have a blood test for this on Friday of this week. Had Sudecks Algodystrophy, have RA and OA and Osteopina, and Lupus and EM and Connective tissue disease.