Symptoms yet undiagnosed

Hi

I and my colleagues have been stumped by my symptoms, hence I thought to check directly with people who may have similar symptoms.

I'm a doctor by profession, 49 years of age, physically active with no diagnosed problems.

I have been feeling light headedeness, giddinees and weaknesses for a while. First episode happened last year which lasted about 3-4 hours with spontaneous recovery but symptoms were so severe that I had to cancel my clinic and take a taxi home. Nothing significant was found (ECG, BP, blood sugar all normal).

About 3 weeks ago, I was playing squash with my friend and for first 6-7 points, I was feeling so light headed that my racket didn't even touch the ball. It then disappeared.

For the last two weeks these attacks are happening repeatedly and all my tests (5 day Holter, CT coronary angio, ECG, brain scan, carotid doppler, blood tests) have been normal

The other two symptoms that I have is skin hyperpigmatation for the last two years (unknown cause) and vague shoulder pains (again no diagnosis yet)

My latest TSH is 3.63 mIU/L (0.25-5). Free T4 16.1 pmol/L (9-23).

Although at this stage, adrenal insufficiency lies at top of the diagnostic possibilities; what do people think of my symptoms and results.

Many thanks in advance.

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15 Replies

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  • Your TSH is in the area where Hypothyroidism should be considered - with the additional testing of the FT3 and Thyroid Anti-bodies - TPO and Tg. Of course it will mean doing the TSH and FT4 again to have the complete picture. The TSH indicates the Thyroid is beginning to fail as the level of FT4 could do with being higher in the range - if only to give adequate T3 levels. As you must know EVERY cell in the body has a receptor for T3 so good levels are required for there to be enough to go around.

    Frozen shoulder/shoulder issues can again be linked to thyroid as can dizziness. There is a comprehensive list of Signs and Symptoms which we suggest people tick off and take to their GP's - in the link below. Also there is a section on Understanding Blood Tests - where you can learn more. It is the main website linked to this Forum.

    thyroiduk.org

    It is also important to have good levels of B12 - which can point towards being a neurological condition when results are below 500 - and should be around 1000 to prevent cognitive decline. B12 works with Folate so that needs testing too - along with Ferritin and VitD. All need to be optimal in range and not bumping along the bottom. It seems most Medics think that as long as we are in range all is well - sadly not - it is where you are in the range that is key :-) Please do read the book - Could it Be B12 ? - by Sally Pacholok, Details in the link below ...

    b12deficiency.info/signs-an...

    Scroll down for the signs and symptoms.

    The Holy Miracle of the Infallible TSH test has let so many of us down. I was diagnosed here in Crete back in 2005 after a lifetime of illness. All TFT's were in range - TSH - FT4 - FT3 - however the Anti-bodies were very high and the U/S revealed nodes galore - and so Hashimotos was diagnosed and treatment began. Over the years I have improved as I have studied and learnt more about how I can help myself. Of course I am fortunate as I can buy T3 over the counter here without a prescription for just over a euro - something that in the UK is being restricted more and more due to exorbitant costs - around 250 GBP's I believe. I was not converting the levo/T4 into the Active T3 and so my GP here added in the T3.

    I am NOT a medic - just a Hashimotos gal with a B12 issue .... After Ileo-caecal TB and Crohns surgery - someone forgot to tell me I would need B12 injections for life - no Terminal Ileum for the last 43 years :-) I now have weekly jabs bought OTC without a prescription in the hope I can repair some of the damage.

    Stick with this forum and we will have you well in no time. All those tests must have cost the NHS a small fortune - and that is why we get so upset on this Forum as the Thyroid is so often overlooked - not tested correctly - and the results not correctly understood.

    Sorry - skin pigmentation can be auto-immune in nature - so definitely check for Hashimotos.

    drrind.com/therapies/thyroi...

  • Suggest you get full thyroid test - that is TSH, TT4, FT4, FT3, both TPO antibodies and TG antibodies.

    Your TSH is on high side but UK guidelines say no treatment until TSH reaches 10 unless you have antibodies. Many people find they are extremely unwell with TSH significantly below 10.

    Not everyone with Hashimotos has high antibodies, if this is case a scan of thyroid may pick it up

    Also very very important to check levels of vitamin D, B12, folate and ferritin. These are commonly low if we are hypo or have high Thyroid antibodies (Hashimoto's)

    But they can also cause significant similar symptoms in their own right. If there is thyroid issue going on, lots of us find these 4 vitamins needs to be at higher end of range.

    If you are in Uk then you can get full private blood tests if GP is unable (labs tend to refuse to do full thyroid tests if TSH is in range & often never do FT3 due to cost cutting )

    See Thyroid Uk website for lots of info and links for testing

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

    Medichecks Thyroid plus ultra vitamin test or Blue Horizon Thyroid plus eleven will test all these

    All Thyroid blood test should be done early in morning as possible and fasting.

    If you were taking vitamin B complex, or anything with Biotin in must stop 4/5 days prior to test as can falsely affect TSH results

    Come back here with a new post once you get full results if you need help & would like members to advise

  • You don't say which blood tests you have had - did you get the 9am cotisol test done? I would assume your sodium and potassium must have been normal. Definitely sounds adrenal so if cortisol was tested could you post the result?

  • Hi

    Na 140 mmol/L (133-146)

    K 4.1 mmol/L (3.5-5.3)

    Cortisol (9 AM random sample) - 316 nmol/L

    I have also written a detailed reply above.

    Many thanks

  • Since your Cortisol is below 400 it would warrant further testing. Can you ask for the Short Synacthen test and take it from there based on the result of that. It should show up Addison's Disease but not necessarily Secondary Adrenal Insufficiency.

  • It makes a huge change to have a hypothyroid doctor seeking help

    have you tested

    thyroid antibodies

    freet3

    ferritin

    folate

    b12

    vitd3

    cholesterol

  • vital that all blood is drawn very early morning

    fasting drinking only water

    and if we are proved correct and you are hypothyroid and then take levothyroxine

    never never take it in previous 24 hours or results will be skewed

  • Thank you everyone for your replies.

    I intentionally omitted some details as my post was getting too long for my taste, but you have all been very kind.

    I appreciate that this is a thyroid forum but I must say that my problem is yet undiagnosed and adrenal insufficiency (at this stage) is at the top of possibilities.

    I went to GP again today and he suggested that I write a summary for him that he can discuss with an on-line consultant service.

    So here are quite few details (that I originally wrote for him).

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

    49 years, male, Pakistani origin. Height 173 cms. Weight 77.5 Kg. BMI around 26. Never smoked; never drank alcohol. Physically active.

    No previous diagnosed problems, incidental finding of low platelet count since 2001; clinically not significant.

    Chronological order of symptoms

    •Skin hyperpigmentation, present for almost 2 years, affecting multiple areas over this time. Ongoing

    •Light headedness :

    oFirst episode last year (? November), spontaneous recovery in 3-4 hours;

    o2nd episode 02/05/2017 during a game of squash, spontaneous recovery in 20-30 minutes

    o May 2017 start of light headedness episodes with feeling of weakness in both lower limbs. Episodes persisted and I got admitted to A&E.

    oPersisting

    •Shoulder pain

    oStarted roughly around end of 2016. Stated with left shoulder (non-dominant side); Now affecting both shoulders

    oSaw physio and private chiropractic Feb/Mar 2017.

    oWhile in holiday in Greece, left shoulder pain got a lot worse. Saw an orthopaedic surgeon and had X-rays

    oPain is not localized and there is no local tenderness that I can palpate. It feels like a deep ache and sometimes like burning.

    •Muscle weakness/breathlessness

    oMuscles feel weak (subtle). Last year (23 July 2016), I climbed Ben Nevis for charity. Now I feel strain in my muscles climbing upstairs in the house

    oMy shoulder muscles ache with subtle activities like teeth brushing and typing this letter

    oMy friends have commented that I was never that breathless during squash last year

    Investigations

    •LOW Vit D3 (Mar 2016) - 16 ng/L (50-150)

    (Only abnormal result so far)

    •Serum Ferritin (Mar 2016) – 55 ug/L (25-300)

    •Thyroid function tests (May 2017)

    oTSH 3.63 mIU/L (0.25-5)

    oFree T4 16.1 pmol/L (9-23)

    •Serum Cortisol (May 2017) random 9 AM sample 316 nmol/L

    •Serum Cholesterol - 4.27 mmol/L (< 5.2)

    •CBC: normal apart from low platelet count which is long standing

    •Urea Electrolytes normal

    •Liver function tests normal

    •Troponin, D-Dimers, CT Coronary Angiogram, Carotid Doppler, Holter monitor 5 day recording, MRI Head, MRI IAM ALL ARE NORMAL

    MRI Cervical spine – wear and tear + disc prolapses probably insignificant (my view)

    Diet:

    •Usual Pakistani diet (very tasty but nutritionally poor) but have changed lately to have more fruit and vegetables. Also taking Omega fish oils, multivitamin supplements, high dose Vit C and Turmeric

  • To clarify the adrenal situation it is better to have the 24 Hour Saliva Testing done through companies mentioned in the Link below .... These can be done at home as these tests are not covered by the NHS.

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

    I see your VitD is extremely low - is the measurement ng/L or nmol/L - if the former then your result needs to be around 60. So taking around 5000 IU's of VitD3 should help matters and then re-test at the end of summer. It is often suggested to take D3 with VitK2 MK7 to ensure improved calcium levels are directed to the bones and teeth and away from soft tissue. Improving your levels could help to solve the skeletal issues. Also take Magnesium and Zinc as additional co-factors.

    grassrootshealth.net

    It is often suggested that Ferritin needs to be halfway through the range - so taking an iron supplement should help - taken with VitC to aid absorption. The low level could explain the breathlessness. No result for B12 - which again could explain some of your symptoms. Levels need to be over 500 to prevent cognitive decline.

    b12deficiency.info/signs-an...

    Multi-vitamins often contain lots of fillers and not enough of anything to benefit VitD /B12/B9 and so on - and if you increase the dose then you may overdose on something that is not beneficial. Best to supplement the things you need.

  • Thanks.

    Vit B12 and K2 are on the order now. I have iron & high dose Vit C tablets already at home. Waiting for recent result of Vit D test to decide how much to take.

    What about Zinc and Magnesium? Shall I buy these separately as these are already included in the other supplements that I have. I was previously buying from Holland and Barrett but now with Nature's best; although todays purchase is through Amazon

  • I have read that H&B are cheap for a reason - lots of nasty fillers ! I do take zinc and magnesium individually - when I run out I leave it for a while. I live in Crete - so no Holland & Barrett for me - so mostly order on-line.

    Always good to test B12 before supplementing to see where it is - in case further investigations are required. Not all the B12 in the blood is available to travel to the cells where it is needed - so the results can be far worse than they appear. MMA and Hcy testing later will confirm B12 deficiency at a cellular level - if required. When taking B12 it is important to have good Folate levels too - so have them both checked before supplementing. If folate and B12 are low then take the B12 for a time before introducing the Folate/B9.

    Taking B12 as a lozenge to keep under the tongue until dissolved is a good way as that will avoid any gut/absorption issues. Thorne Research do a good B complex and Jarrow Methylcobalamin B12 5000mcg and 1000mcg - both from Amazon.

    Could your skin issues be vitiligo ? - rather than linked to adrenals ?

  • Skin hyperpigmentation, breathlessness and muscle weakness can all be caused by low iron.

    Low platelets can be caused by aenemia - you say its long standing, has it ever been looked into?

  • Further update:

    Telephone chat with GP and a routine follow up appointment with Dermatologist today.

    Dermatologist has been kind and requested quite few tests despite being uncomfortable as it is Endo's domain.

    Tests requested include Thyroid function including FT4, FT3, Reverse T3 and thyroid antibodies. Also included are Ferritin, folate and B12. He has also given in to requesting 9 am and midnight cortisol; but strangely neither the hospital or my surgery has the arrangement to take midnight samples. Since I'm an anaesthetist by trade, I can arrange these but not everyone has this option

    reallyfedup123 (so many people with similar names which says a lot LOL). I have taken my supplements today but wouldn't take these tomorrow. Tests can only be done aorund 0930 as this is the time they open for taking samples, so can't take samples before that. Plenty of time to drink fluids then

    Marz : my skin is hyperpigmented and has been biopsied twice. I can't attach a picture to this post, otherwise I would have. It is unlikely to be vitligo. I have already ordered 6 months supply of B12 and 1 year supply of K2 (MK7) and turmeric; so lozenges next time

    @Silver_Fairy: my breathlessness is very subtle. We are talking of being unduly breathless on strenuous exercise (I was playing regular squash untill 3 weeks ago). "Medics" don't see this. My Iron is normal. My Hb is also normal. My platelet count has been described as idiopathic. My main symptoms are light headedness, shoulder pains, weakness and skin hyperpigmentation.

    Next update would be with the results, I hope

  • Latest update

    It has some good news and some not so good element in it.

    Most of my tests have come back as normal apart from Vitamin D (which s higher than before but still not optimal) and IgM which is low. Some interesting trends as well.

    So

    Vit D 58.8 nmol/L (still not optimal but previously 16) (>75)

    IgM 0.31 g/L (0.5-2.0)

    TSH in 2009 --> 1.12; in 2011 --> 1.70; in 2014 --> 1.09; in 2016 --> 2.19; may 2017 --> 3.63 (range 0.25-5.0)

    Free T3 (eventually done) 4.8 pmol/L (3.1-6.8)

    Cortisol readings: 316; 456; 366

    Folate: 6 ng/ml (3.9-26.8)

    B12: 444 pg/ml (197-771)

    Iron 15.4 umol/L (11-28)

    Transferrin 2.66 g/L (2-3.6)

    Ferritin 80 ng/ml (30-400)

    Link for TSH graph if it works is below

    chartgo.com/share.do?id=085...

    Bad news is that lab choose not to do any thyroid antibodies that WERE requested.

    I have seen an endocrinologist and he was not interested in any testing. I had to push him for repeating my Vit D and he has essentially referred me to ENT thinking it may be an internal ear problem; despite admitting that it wouldn't explain my hyper-pigmentation and shoulder pains and weakness.

    From the above tests, it seems that I shouldn't worry about B12 (at the moment taking a super strength supplement); load some Iron, Folate, Vit D and keep looking. My investigations don't seem conclusive.

    At the monet, I'm taking no medicines but taking Vit D (5000 IU, though just have bought 20,000 IU strength today), Vit B12 1000mcg, Vit K2 mk7 200 mcg, Organic Turmeric extract, A to Z of multivitamins and minerals (a blunderbust of everything in reasonable strength), high dose Vit C, cod liver oil for omega-3 EPA & DHA etc.

    In terms of my symptoms, I'm about 90% better and have gone back to work which s obviously important. But I'm not 100% and haven't gone back to gym/squash yet.

    I really do not know what else to do. Part of me thinks that i should get thyroid antibodies and 24 hour cortisol privately but I'm waiting for my GP to do few more tests and go through ENT first.

    What do you all suggest?

  • Shoulder pain

    Since you can't point to a spot and say "That's where it hurts", have you considered that the problem may be caused by referred pain and that the source of the problem might be unconnected with your shoulder?

    gponline.com/referred-shoul...

    anatomynotes.blogspot.co.uk...

    ***

    Cortisol

    The cortisol measured in blood is total cortisol i.e. cortisol bound to transport proteins plus cortisol which is free (and therefore biologically active).

    Saliva tests for cortisol measure cortisol which is free, and these results tend to correlate better with symptoms.

    Patients who have investigated both serum cortisol and salivary cortisol have found that the correlation is not always as strong as you might expect, and total cortisol might be high while free cortisol might be low, or vice versa.

    There should be a circadian rhythm to cortisol production, but this rhythm is lost when adrenal function is severely disturbed. See this very basic image :

    data.integrativepro.com/ima...

    Just because serum cortisol is okay at 9am doesn't mean that cortisol output is okay all day. With saliva testing free/unbound cortisol levels can be tested at various points during the day. A common test is to measure cortisol at 4 separate times a day.

    The usual saliva test done by patients in the UK is :

    gdx.net/uk/product/adrenal-...

    It has to be arranged through a doctor or through Thyroid UK. If you choose to order through a doctor then the assumption is that the doctor will interpret the results for you. If you order through Thyroid UK you have to interpret the results yourself, ask patients or pay a doctor to do the interpretation for you.

    How to arrange cortisol testing :

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

    In the above link read how to order the test, and how to get your results.

    Optimal cortisol levels :

    rt3-adrenals.org/cortisol_t...

    See Example 1 in the above link.

    Cortisol can be reduced or increased either with prescribed drugs or with supplements that are available without prescription.

    If you get more testing done courtesy of endocrinologists then you should find this helpful in checking that tests are carried out properly and in determining how to interpret results :

    imperialendo.co.uk/Bible201...

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