The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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My thyroid test shows a tsh of 5.2 but normal t4

Discussion in 'Thyroid Dysfunction' started by tinacarroll27, Mar 23, 2017.

  1. tinacarroll27

    tinacarroll27 Senior Member

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    Hi all I just got my test results from my GP with a TSH of 5.2 but T4 is normal. My GP is now treating me as if I don't have ME but I disagree with her because I get PEM and I fit the Canadian criteria and I also took ill after a virus in 2013, which I never recovered from. My thyroid was normal in 2014 but I felt terrible and I think this is all linked some how to the ME but my GP doesn't see it that way. Can you have hypothyroidism and ME together? I think you can but that's just my opinion.
     
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  2. Helen

    Helen Senior Member

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    Hi Tina, Yes, you can have both . According to my ME-doctor the prevalence of hypothyroidism is more common among PWME.

    If you haven´t visited this site (it´s also the name of a book) https://stopthethyroidmadness.com/ you will probably find a lot of useful information. Before the TSH lab test was available, doctors could diagnose a person with hypothyroidism from symptoms. It´s still possible. Drs. Broda Barnes and Mark Starr have written excellent books on hypothyroidism with very good descriptions of the symptoms. They differ quite a lot from ME, although some may be mainly the same. I hope you´ll find useful information and that you get tretament if you´ll need it.

    PS. Dr. Jeffrey Dach also has great articles on the Internet on hypothyroidism due to Hashimotos (the most common and autoimmune form)
     
  3. Kati

    Kati Patient in training

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    Yes @tinacarroll27 you can have both. i do and I developped hypothyroidism alongside with my disease onset. in fact I gained 100 lbs. My TSH went as high as 7.22 and it was with insistence that I finally got drs to give me meds.

    I believe the current guidelines amongst physicians is to start treatung if TSH is over 7. Perhaps you need to be retested in a couple of months to see where it's at.

    Note that getting thyroid meds did not change anything for me in terms of ME symptoms. It doesn't make you lose weight or anything like that either. Bummer.
     
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  4. wastwater

    wastwater Senior Member

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    What is it that does this to the thyroid if it isn't antibodies surely it's cytokines as they affect the thyroid
    Not many doctors know that this is a side effect on having pvfs and they will think they have found the source of you're fatigue but it isn't so
     
    Last edited: Mar 23, 2017
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  5. Jan

    Jan Senior Member

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    I would be very interested to know what caused mine, I became hypothyroid after 20 years of ME, (though I think I was probably un-diagnosed for a number of years). I do not apparently have Hashimotos, and none of the other causes I've read about apply to me. So what has caused it, what has caused the neuro problems I have and what has caused me to have heart valve disease? I wish someone would do some research on me as all these questions remain unanswered.
     
  6. charles shepherd

    charles shepherd Senior Member

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    Firstly, I think you should discuss the following three points with your GP:

    a) Repeat testing for TSH and fT4

    b) Measure thyroid peroxidase antibodies if TSH remains elevated

    c) Consider treatment if the TSH continues rising and/or there are symptoms of hypothyroidism

    Secondly, hypothyroidism affects one in 70 women and one in 1000 men -

    So there are plenty of people with both ME/CFS and hypothyroidism - some of them being unrecognised and untreated

    Thirdly, some clarification on thyroid hormones (TSH, fT4 and T3) and thyroid function tests:

    Thyroid stimulating hormone (TSH) is released from the pituitary gland in the brain and tells the thyroid gland (in the neck) to produce free thyroid hormone (fT4)

    fT4 is then converted into T3, the active thyroid hormone that revs up cells all over the body

    So if there are signs or symptoms of hypothyroidism (low thyroid function) a GP will check for a raised level of TSH and a low level of fT4

    If the TSH is higher than normal this suggests that the pituitary gland is doing extra work to try and make the thyroid gland produce more fT4 - but the gland isn't responding

    The result is hypothyroidism - which has a number of symptoms which overlap with ME/CFS (fatigue, muscle weakness, cognitive dysfunction, sensitivity to cold) and others which do not (constipation, hoarse voice, dry pale skin, thinning of the hair and outer third of eyebrows, slow pulse rate)

    However, there are problems with the blood tests that are used to diagnose thyroid disease - especially when the results are borderline and symptoms/signs are suggestive of hypothyroidism

    There are no standard international reference ranges. So here in the UK, the bar is set higher than in many other countries and some doctors (myself included) feel that the UK guidelines are sometimes being interpreted too rigidly

    Having a low but normal fT4 and a high but normal TSH should arouse suspicions of hypothyroidism. Sadly, this is not the case with some GPs.

    Thyroid peroxidase antibodies should also be measured if the TSH remains elevated

    There are also concerns about the way in which a synthetic version of fT4 is almost always prescribed

    Synthetic T4 works in most cases but in some cases the problem does not lie with the thyroid gland failing to produce enough fT4 - the problem lies with the conversion of fT4 to active T3

    T3 can be taken in tablet form but the cost here has escalated to the point where two months supply of a drug that is fairly cheap to produce is around £300

    If there are any doubts about either the diagnosis or management of thyroid disease, I would strongly advise asking a GP for a referral to an NHS hospital hormone specialist (endocrinologist) rather than heading off to the private sector for what can be very expensive consultations, tests and sometimes very questionable treatments

    UK adult reference ranges:
    TSH = 0.4 - 4.5mU/L
    Ft4 = 9.0 - 25pmol/L

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  7. Chrisb

    Chrisb Senior Member

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    @charles shepherd

    I was interested in your helpful analysis of this problem.

    I wonder whether from your experience you believe that there might be a group of ME patients who typically display lowish, but well within normal boundaries, T4 and slightly elevated TSH but who are not helped, or possibly adversely affected, by Levothyroxine , despite it bringing readings to within accepted boundaries.

    Could such cases be distinguished from other groups with similar readings who are helped by the medication?

    My experience was that a GP was not interested in discussing the possible issues arising around T3 and merely put my wish to discuss it down to an unhealthy concern for matters medical, although I was only aware of the issue because I had been informed of it by a family member, who was a GP, and who thought it unlikely that I was hypothyroid.
     
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  8. charles shepherd

    charles shepherd Senior Member

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    Sorry - but the simple answer is that while it is an interesting question in relation to people with ME/CFS who may have might be termed 'borderline hypothyroidism' I don't have a reliable answer

    We receive a lot of feedback from people with ME/CFS who are being investigated and treated for hypothyroidism

    Some of them don't get the benefit from treatment that would be expected (for reasons which are sometimes difficult to understand) and some of them have problems with side-effects

    The latter can, of course, be due to receiving a higher dose of thyroxine than they can cope with and also occurs when people with no other health problems are treated with thyroxine

    Here is some basic UK info on management of hypothyroidism:

    Treating an underactive thyroid

    An underactive thyroid (hypothyroidism) is usually treated by taking daily hormone replacement tablets called levothyroxine.

    Levothyroxine replaces the thyroxine hormone, which your thyroid doesn't make enough of.

    You will initially have regular thyroid blood tests until the correct dose of levothyroxine is reached. This can take a little while to get right.

    You may start on a low dose of levothyroxine, which may be increased gradually, depending on how your body responds.

    Some people start to feel better soon after beginning treatment, while others don't notice an improvement in their symptoms for several months

    Once you are taking the correct dose, you will usually have a blood test once a year to monitor your hormone levels

    If blood tests suggest you may have an underactive thyroid, but you don't have any symptoms or they're very mild, you may not need any treatment.

    In these cases, your GP will usually monitor your hormone levels every few months and prescribe levothyroxine if you develop symptoms.

    Taking levothyroxine
    If you are prescribed levothyroxine, you should take one tablet at the same time every day. It's usually recommended that you take the tablets in the morning, although some people prefer to take them at night.

    The effectiveness of the tablets can be altered by other medications, supplements or foods, so they should be swallowed with water on an empty stomach, and you should avoid eating for 30 minutes afterwards.

    If you forget to take a dose, take it as soon as you remember, if this is within a few hours of your usual time. If you don't remember until later than this, skip the dose and take the next dose at the usual time, unless advised otherwise by your doctor.

    An underactive thyroid is a lifelong condition, so you'll usually need to take levothyroxine for the rest of your life.

    If you're prescribed levothyroxine because you have an underactive thyroid, you're entitled to a medical exemption certificate. This means you don't have to pay for your prescriptions.

    Side effects

    Levothyroxine doesn't usually have any side effects, because the tablets simply replace a missing hormone.

    Side effects usually only occur if you're taking too much levothyroxine. This can cause problems including sweating, chest pain, headaches, diarrhoea, and vomiting.

    Tell your doctor if you develop new symptoms while taking levothyroxine. You should also let them know if your symptoms get worse or don't improve.

    Combination therapy
    In the UK, combination therapy – using levothyroxine and triiodothyronine (T3) together – isn't routinely used because there's insufficient evidence to show it’s better than using levothyroxine alone (mono therapy).

    In most cases, suppressing thyroid-stimulating hormone (TSH) using high dose thyroid replacement therapy should be avoided because it carries a risk of causing adverse side effects, such as atrial fibrillation (an irregular and abnormally fast heart rate), strokes and osteooporosis and fracture.
     
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  9. Chrisb

    Chrisb Senior Member

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  10. charles shepherd

    charles shepherd Senior Member

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    There is also an interesting but far less common condition called central hypothyroidism - which should always be suspected when THS levels are reduced - as opposed to being raised in primary hypothyroidism

    Abstract below from an academic review of central hypothyroidism in the Journal of Clinical Endocrinology and Metabolism:

    https://academic.oup.com/jcem/article-lookup/doi/10.1210/jc.2012-1616

    Central hypothyroidism (CH) is a particular hypothyroid condition due to an insufficient stimulation by TSH of an otherwise normal thyroid gland. This condition raises several challenges for clinicians; therefore, a review of the most relevant findings on CH epidemiology, pathogenesis, and clinical management has been performed.

    CH can be the consequence of various disorders affecting either the pituitary gland or the hypothalamus, but most frequently affecting both of them. CH is about 1000-fold rarer than primary hypothyroidism.

    Except for the neonatal CH due to biallelic TSHβ mutations, the thyroid hormone defect is rarely as profound as can be observed in some primary forms.

    In contrast with primary hypothyroidism, CH is most frequently characterized by low/normal TSH levels, and adequate thyroid hormone replacement is associated with the suppression of residual TSH secretion.

    Thus, CH often represents a clinical challenge because physicians cannot rely on the systematic use of the “reflex TSH strategy.”

    The clinical management of CH is further complicated by the frequent combination with other pituitary deficiencies and their substitution
    .
    From an academic review of central hypothyroidism in the Journal of Clinical Endocrinology and Metabolism:

    https://academic.oup.com/jcem/article-lookup/doi/10.1210/jc.2012-1616
     
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