Blood values 'in range' but at my whits end with feeling so terrible

Hi everyone

I'm hoping someone might be able to help because I'm at my whits end and my doctor is refusing to help/ refer me to an endo.

I was diagnosed with an under active thyroid 20 years ago. I take 125mg levothyroxine and my most recent blood work suggest this is still correct. However I feel completely drained, knackered before getting up in the morning, completely unmotivated- despite a head whizzing with ideas, almost unable to cope by mid afternoon I'm so tired. My legs begin twitching around 3pm and just get worse as the evening goes on- preventing me from falling asleep at least several times a week. My toes twitch involuntarily, and my thumb has just started doing the same- when I'm at rest. My memory is terrible and I get terrible "brain fog". My mood is low most of the time and any social gathering now turns me into an anxious mess- I can hardly get ready my hands shake so much. Having always been of skinny frame I am now really struggling to keep weight off. Lastly my throat fills with phlegm all day- I feel like I'm drowning at times and I have to swallow constantly or hack up the most disgusting brown goop. I have a visible (not huge) swelling in my neck .

I don't smoke, eat organic veg, very little sugar. I've tried eliminating dairy and wheat to no avail. I have suffered bouts of depression over the years, most recently as post natal depression. I have a three year old who is full on but I disagree with my doctor that I am probably this tired because of that. He says I am still suffering from an "affected disorder", i.e. depressed, and should go back on to ecitilopram.

Not only do I not think this is the right course of action I have recently read that ecitilopram disrupts thyroxine absorption, but he says that everything is within range so there is nothing else they can advise. He won't even look at the articles I took in relating depression to thyroid/ restless legs to thyroid/ and the long list of symptoms I can tick off as being thyroid related.

I just don't know what to do next!

My blood results are :

TSH: 2.15 mlU/L (range 0.27-4.20)

Free T4: 15 pmol/L (range 12-22)

Free T3: 4.7 pmol/L (range 3.10 -6.8)

Serum anti TPO antibodies >600 ku/L (range <34)

Haemoglobin 132 g/L (range 125-165) which he tells me indicates my iron is 'fine'

Can anyone advise whether these results are sufficiently 'in range' and what else, if anything, I should have tested. I am only now , 20 years on at the age of 40 realising how massively my thyroid has affected my life but as my energy levels are now beginning to affect my ability to parent I feel a fight coming on to get better diagnosed!

Many thanks in advance x

3 Replies

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  • I should perhaps add - I had a huge spread of endometriosis removed from my pouch of Douglas 5 years ago and still suffer chronically with my periods.

    My mum has multiple sclerosis and also suffers with thyroid

    Both parents now have type 2 diabetes

  • Mrsdafox You are undermedicated, you need an increase in your dose of Levo.

    The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed to be for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well.

    Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in a Pulse Online magazine article:

    "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)."

    If you email louise.roberts@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP.

    If your GP shows no interest in helping you further, then I would ask for a referral to an endo, many endos now understand the importance of aiming for TSH to be around 1. You can get a list of thyroid friendly endos from Louise at the email address given. If your GP refuses a referral then you must be assertive and tell him that you are a human being with continued symptoms of hypothyroidism and that you would like to be treated as such, rather than him treat a set of numbers.

    It seems as though your GP has failed to tell you that you have autoimmune thyroid disease, aka Hashimoto's. This is where antibodies attack the thyroid until it is destroyed. Hashi's isn't treated, it's the resulting hypothyroidism that is treated. You can help yourself to reduce the antibody attacks by:

    1) Adopting a strict gluten free diet which many members have found to be enormously helpful. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

    2) Supplementing with selenium, L-selenomethionine 200mcg daily, as selenium is thought to help reduce the attacks.

    3) Keeping TSH very low or suppressed is also thought to help reduce the attacks.

    Some people find that they also need to be dairy free.

    You can read about Hashi's here:

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    hypothyroidmom.com/hashimot...

    thyroiduk.org.uk/tuk/about_...

    Gluten/thyroid connection:

    chriskresser.com/the-gluten...

    As far as your haemoglobin is concerned, yes it is in range but that's not the full picture. Did he not do a full iron panel?

    Most of us hypos are deficient in important vitamins and minerals ie

    Vit D

    B12

    Folate

    Ferritin

    and you should ask for all these to be tested. You need optimal levels, not just 'in range', as anything less than optimal means that thyroid hormone can't work properly. If you GP wont test them then you can get them done privately with a home fingerprick test with Blue Horizon or Medichecks. Once you have the results, post them with their reference ranges and members can identify any deficiencies and suggest supplements if necessary.

    Please stay off the ecitilopram, depression can be part of under treated hypothyroidism (or undiagnosed hypothyroidsm).

    Are you taking anything else that may affect the uptake of your Levo? The Pill? Any other meds?

    Do you take your Levo on an empty stomach, one hour before or two hours after food, and away from other meds and supplements?

    When booking your blood tests, always get the first appointment of the day, fast overnight (water only) and leave off Levo for 24 hours - take that morning's dose after the blood draw. This way you will have consistent conditions for the test and can compare them like for like. TSH is always higher earlier in the morning and lower later in the day and after food. To avoid a dose reduction, or looking for an increase in Levo then we need TSH to be as high as possible.

  • Your thyroid results are in range (apart from the antibodies), and that is all your doctor cares about. To give your doctor some credit he did test your antibodies and your Free T3, which very few will do.

    From the point of view of a patient though, your results are nowhere near optimal and I'm not surprised you feel terrible.

    ----------------------------

    TSH : For a hypothyroid patient on levothyroxine your TSH is too high. Most people in your situation feel better with a TSH below 1.0. To lower TSH you need more Levo.

    Free T4 : Should be in the upper half of the range. For many of us we have to get levels up to the top third or top quarter of the range in order to feel well.

    Free T3 : Same comments apply as for Free T4.

    The comments above apply to people who are on levo. Different patterns of results could be expected if you took other thyroid meds or combinations of thyroid meds.

    -----------------------------

    Your results show positive antibodies, meaning that you have autoimmune hypothyroidism (also called Hashimoto's Thyroiditis). Has your doctor ever told you this? Having high antibodies causes people to feel ill, and causes thyroid hormone levels to go up and down like a yo-yo.

    To increase your chances of feeling better you need to reduce the number of antibodies. For many people this requires the activity of the gland to be reduced - and to do that you need to increase your meds so that your thyroid has to do as little as possible.

    The other thing that helps many people is to go gluten-free (not just wheat-free) and be ruthless about it. Try the experiment for, say, 3 months. If it helps then keep it up, if you get no benefits at all, then you could start eating gluten again if you wanted to. The other thing some people find helpful is to avoid lactose/dairy. I wouldn't do both experiments at the same time. There is no point knocking lots of things out of your diet if you don't need to, and going gluten-free may be sufficient.

    ---------------------------------

    Your haemoglobin looks okay, but as someone who suffers from low iron, I wouldn't rely just on haemoglobin to tell me whether or not I have sufficient iron. I would want to have a full iron panel which includes ferritin, serum iron, transferrin saturation and TIBC. Doctors very rarely test all these things though. Low ferritin is a known cause of restless legs.

    emedicine.medscape.com/arti...

    If you do a search for "restless legs ferritin" you'll find loads of links on this.

    -----------------------------

    I had restless legs and I needed to do several things to get rid of the problem. I supplement magnesium and it helped hugely. Almost everyone on the planet is short of magnesium. There are lots of different kinds of magnesium supplements, and you have to choose the one that works for you. Avoid magnesium oxide, the body can hardly absorb it. Some links :

    metabolics.com/blog/the-def...

    naturalnews.com/046401_magn...

    globalhealingcenter.com/nat...

    Personally I take 300mg - 400mg magnesium citrate in the evenings. It can make some people relaxed and sleepy. It also has a laxative effect. If you want to avoid this then choose something else - there are loads to choose from.

    -----------------------------------

    I have found that I get some benefit from supplementing potassium - it reduces cramps, muscle spasm and involuntary muscle tightening. However, potassium supplementation is not something to do lightly, and anyone doing it should supplement very, very cautiously. I take 2 * 99mg potassium supplements just before bed. Since the body's daily reference intake for potassium is 4700mg per day, you can see what I mean about being cautious. Excessive potassium would affect heart rhythm.

    ----------------------------------

    Another thing which is vital for thyroid sufferers is good levels of ferritin, folate, vitamin B12 and vitamin D. You could ask your doctor to test them but if he won't do them, and you can afford private testing, then you can get these tested without involving doctors. Some useful links :

    thyroiduk.org.uk/tuk/testin...

    bluehorizonmedicals.co.uk/T...

    bluehorizonmedicals.co.uk/W...

    medichecks.com/find-a-test/...

    The tests linked to above can be done with finger-prick testing. The basic process is :

    1) Order online or by phone.

    2) A kit gets sent to you through the post.

    3) Prick your fingers to get a blood sample.

    4) Send the blood sample back to the lab through the post.

    5) Results are sent via email.

    If you know someone who can take blood samples from the elbow (like the NHS would use), then this kind of kit can be ordered to.

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