Thyroid help and advice

Hi guys

I’d like some help and advice with my current symptoms and situation regarding my thyroid.

To start, I was diagnosed as Hypo in Dec 2016 as was started on 25mcg of Levo. As the months continued, my dosage went up to 100mcg.

I felt fine and normal up until June when my symptoms started, I felt dizziness, fullness in head like a clamp was squeezing it, neck ache/pain. fatigue etc.

I went to the doctors twice and was eventually referred for a blood test to which my regulars were...

24 June

Specimen Type: BLOOD

Specimen Reference#: 1

Specimen Providers Comments: REQUESTED TEST SETS COMPLETE

Collected: 27 Jun 2017

Received: 27 Jun 2017

Provider Sample ID: 17B00304225

Pathology Investigations

Urea and electrolytes

Serum sodium level 139 mmol/L [133.0 - 146.0]

Serum potassium level 3.7 mmol/L [3.5 - 5.3]

Serum urea level 4.5 mmol/L [2.5 - 7.8]

Serum creatinine level 67 umol/L [59.0 - 135.0]

Liver function tests

Serum total protein level 69 g/L [60.0 - 80.0]

Serum albumin level 44 g/L [35.0 - 50.0]

Serum globulin level 25 g/L [20.0 - 35.0]

Serum alkaline phosphatase level 66 u/L [30.0 - 130.0]

Serum total bilirubin level 10 umol/L [0.0 - 21.0]

Serum alanine aminotransferase level 38 u/L [0.0 - 50.0]

Plasma glucose level 5.5 mmol/L [3.0 - 11.1]

Thyroid function test

Serum TSH level < 0.01 mu/L [0.3 - 5.0]

Below low reference limit

Serum free T4 level 15.0 pmol/L [8.4 - 19.1]

FULL BLOOD COUNT

Haemoglobin concentration 142 g/L [130.0 - 180.0]

Total white blood count 8.1 10*9/L [4.0 - 11.0]

Platelet count - observation 228 10*9/L [150.0 - 400.0]

Haematocrit 0.42 L [0.4 - 0.52]

Red blood cell count 4.91 10*12/L [4.5 - 6.5]

RDW 12.5 % [11.0 - 14.8]

Mean cell volume 85.2 fL [80.0 - 100.0]

Mean cell haemoglobin level 28.8 pg [27.0 - 32.0]

MPV 9.2 fL

Neutrophil count 3.94 10*9/L [1.7 - 7.5]

Lymphocyte count 2.86 10*9/L [1.5 - 4.5]

Monocyte count - observation 1.18 10*9/L [0.2 - 0.8]

Above high reference limit

Eosinophil count - observation 0.09 10*9/L [0.0 - 0.4]

Basophil count 0.03 10*9/L [0.0 - 0.1]

GFR calculated abbreviated MDRD

GFR calculated abbreviated MDRD > 60 mL/min [60.0 - 250.0]

Serum free triiodothyronine level 8.4 pmol/L [3.8 - 6.0]

Above high reference limit

TFTs consistent with T3 toxicosis, this may be

seen early in the course of Graves or in mild

toxic hyperthyroiidsm. Suggest discussion with

endocrine team. Funmi Akinlade (Consultant

Biochemist)

So another visit to the doctor, which resulted in them lowering my levothyroxine to 75mcg. This had no effect and my symptoms continued to worsen, I went back to the doctors in around August. I was then referred to and Endo ( apt is due in Oct)

My referral came through and I booked up, a week later My doctors and I both received a letter from the Endo team and was instructed to take 10mcg of Carbimozol (spelling).

So off to My doctor again to discuss this letter, they were not happy with the request and referred my for another blood test below.

Specimen Type: BLOOD

Specimen Reference#: 1

Specimen Providers Comments: REQUESTED TEST SETS COMPLETE

Collected: 04 Sep 2017

Received: 04 Sep 2017

Provider Sample ID: 17B00338033

Pathology Investigations

Thyroid function test

Serum TSH level 0.01 mu/L [0.3 - 5.0]

Below low reference limit

Serum free T4 level 12.0 pmol/L [7.9 - 16.0]

General Information

Service Type: New

Status: Unspecified

Provider Report ID: 1-17B00338033-1217879

Report Date: 05 Sep 2017

From this information and after a little research I’ve completely changed my diet, not that it was bad before and have stopped taking my levothyroxine and my last tablet was 2 weeks ago.

So to summarise;

My symptoms have continued and worsened to; muscle weakness, aches, twitches and pains.

Still have a fullness tight head feeling that comes and goes.

I get bad upper pains on the back of he neck/ top of spine.

Pressure in my sinuses and ears.

Tight chest every so often.

My mood is hit and miss and my emotions seem to be all over the place. Some moments I’m normal then I become sad or extremely joyful where I want to cry with happiness.

My anxiety and paranoia is through the roof because every new symptom i have I think it’s bad

So until my next blood test on the 4th of Oct

my Endo appointment on the 18th

And I also have a CT scan on the 14th

But I’m still none the wiser to anything else that can help me.

18 Replies

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  • There's something a bit strange, here. When your doctor consulted the endo, did he actually say that you were taking 100 mcg levo? Because to prescribe 10 mcg Carbimazole to a hypo on levo is a bit strange. Of course, your FT3 was a little high. Never mind the TSH, that is irrelevant once you are on thyroid hormone replacement (levo) but your FT3 was high, so it would have been sufficient to lower the dose.

    Next step should have been to test your antibodies! It's perfectly possible that you have Hashi's, which would make your results swing around all over the place. Not prescribe an anti-thyroid drug.

    Carbimazole is an anti-thyroid drug, which prevents your thyroid from making too much hormone. Your thyroid isn't making too much hormone, because you were diagnosed hypo. A hypo gland cannot suddenly start making too much hormone.

    However, if you have Hashi's, which is an autoimmune disease, you could have suffered an immune attack at some point, which raise your levels as the dying cells of the gland released their store of hormone into the blood. However, one would expect the FT4 to be high, too.

    In the next test, your FT4 has come down considerably - although it was never high - but they didn't bother to test the FT3, so we don't know if that has come down. But, if they're going to continue reducing until the TSH rises, they could make you very sick. So, before that happens, I would insist your GP tests your antibodies - he can do that, he can test for autoimmune thyroiditis. Then, you will have a clearer idea of what's going on. I would not recommend taking the carbimazole!

  • When he contacted the Endo Im unsure as to wether he had told them my then current dosage,

    In regards to a high TSH 0.01 I was lead to believe this could be due to t3 thyrotoxicosis?

    I have managed to go back a little further to find some older blood tests, But according to all previous blood tests, my last one where a test for antibodies were completed back in Feb.

    Feb.

    Specimen

    Specimen Type: BLOOD

    Pathology Investigations

    Thyroid function test

    Serum TSH level 1.11 mu/L [0.3 - 5.0]

    Serum free T4 level 10.9 pmol/L [8.4 - 19.1]

    Note change in TFT methods and ref ranges from

    27th Sept 2016

    ANTI THYROID PEROXIDASE 1.1 iu/mL [0.0 - 9.0]

    Negative anti thyroid peroxidase antibody

    Note change in anti thyroid peroxidase antibody

    method and ref range from 3rd Feb 2017Specimen Type: BLOOD

    Specimen Reference#: 1

    Specimen Providers Comments: REQUESTED TEST SETS COMPLETE

    And this one in May, But no Antibody test was requested.

    Collected: 03 May 2017

    Received: 03 May 2017

    Provider Sample ID: 17B00340419

    Pathology Investigations

    Liver function tests

    Serum total protein level 74 g/L [60.0 - 80.0]

    Serum albumin level 46 g/L [35.0 - 50.0]

    Serum globulin level 28 g/L [20.0 - 35.0]

    Serum alkaline phosphatase level 57 u/L [30.0 - 130.0]

    Serum total bilirubin level 11 umol/L [0.0 - 21.0]

    Serum alanine aminotransferase level 25 u/L [0.0 - 50.0]

    Bone profile

    Serum calcium level 2.44 mmol/L [2.2 - 2.6]

    Calcium adjusted level 2.36 mmol/L [2.2 - 2.6]

    Thyroid function test

    Serum TSH level 0.05 mu/L [0.3 - 5.0]

    Below low reference limit

    Serum free T4 level 15.0 pmol/L [8.4 - 19.1]

    General Information

    Service Type: New

    Status: Unspecified

    Provider Report ID: 1-17B00340419-916295

    Report Date: 05 May 2017

  • Not sure what that comment means

    "Note change in anti-peroxidase antibodies"

    It seems to suggest you previously tested positive

    Ask GP or look through further back in time on old blood test results

    If ever tested, even once, as positive then it would mean you have Hashimoto's

    Have you got any old test results for

    Vitamin D, folate, B12 or ferritin including ranges

  • This was the first test taken that diagnosed me as Hypo...

    Received: 28 Dec 2016

    Provider Sample ID: 16B01156468

    Pathology Investigations

    Thyroid function test

    Serum TSH level 1.75 mu/L [0.3 - 5.0]

    Serum free T4 level 7.8 pmol/L [8.4 - 19.1]

    Below low reference limit

    Note change in TFT methods and ref ranges from

    27th Sept 2016

    Not sure what this is^

    FULL BLOOD COUNT

    Haemoglobin concentration 151 g/L [130.0 - 180.0]

    Total white blood count 6.6 10*9/L [4.0 - 11.0]

    Platelet count - observation 231 10*9/L [150.0 - 400.0]

    Haematocrit 0.46 L [0.4 - 0.52]

    Please note change in FBC method from 20/09/16.

    No significant differences in results expected.

    Red blood cell count 5.23 10*12/L [4.5 - 6.5]

    RDW 12.8 % [11.0 - 14.8]

    Mean cell volume 87.8 fL [80.0 - 100.0]

    Mean cell haemoglobin level 28.9 pg [27.0 - 32.0]

    MPV 8.9 fL

    Neutrophil count 3.01 10*9/L [1.7 - 7.5]

    Lymphocyte count 2.58 10*9/L [1.5 - 4.5]

    Could it be This?

    Monocyte count - observation 0.88 10*9/L [0.2 - 0.8]

    Above high reference limit

    Eosinophil count - observation 0.11 10*9/L [0.0 - 0.4]

    Basophil count 0.02 10*9/L [0.0 - 0.1]

    And unfortunately i don't think I've even been test for any Vitamin D, folate, B12 or ferritin.

  • Doesn't surprise me. The four essential vitamins linked to thyroid issues and yet we never get tested!

    It's why the NICE guidelines need serious overhaul

    Ask GP to test these on Oct 4th

    Plus TPO and TG antibodies

    TSH, FT3 and FT4

  • There is no antibody test in those results, I'm afraid. So, what you need next is, as I said, another antibody test.

  • Thank you greygoose, Im going to contact the GP.

    I've also looked on the blood test form that was sent to me from the Endo that you give to the blood technician, and They haven't crossed out the section where it states on Thyroxine. So to my understanding, they have not been told?

  • It certainly would sound that way. But, do be careful. A lot of endos know nothing about thyroid, I'm afraid, so double check everything he tells you. It might have been that he didn't know you were hypo, but it might have been that he doesn't know the difference between hypo and hyper! Happens!

  • Oh dear god. I've not got much faith in the NHS at the moment as its has been ongoing since June! so i wouldn't put it past them!

    Though Ive always wondered how the older generation lived with conditions like these and without the aid of the internet and knowledge from people like yourself and SlowDragon.

    The mind wonders

  • In the old days, doctors were more knowledgeable. But, since the rise and rise of Big Pharma, their education has been severely reduced. They learn less and less about thyroid, because Big Pharma is aware of the money to be made out of us, and all our symptoms! They don't want us to get better, it's not in their interests. What with statins for our high cholesterol, beta blockers for our high blood pressure, anti-depressants for our low mood, PPIs for our stomach problems... the list goes on and on. They are making several small fortunes! And, as they say, he who pays the piper, decides what doctors learn in med school!

  • I couldn't agree with you more!

  • In those days the doctor examined the patient, made a note of physical symptoms, listened to what they said and made an informed medical diagnosis

    These days much more likely to look at the computer screen the whole consultation and if the computer and blood tests say 'No' that's the diagnosis, even if, had the patient been examined for clinical symptoms of hypothyroidism it would have been obvious the answer was "yes"

    Plus back then there wasn't this misguided dogma of T4 mono therapy.

  • 'In regards to a high TSH 0.01 I was lead to believe this could be due to t3 thyrotoxicosis?'

    If your FT3 is high, then your TSH is going to be low, obviously, but the TSH doesn't mean anything in and of itself, unless it is high.

    Your FT3 was high, but hardly high enough to count as thyrotoxicosis. It was just a bit over-range.

    So, you've only had one antibody test? That one was negative, but that doesn't prove anything because antibodies fluctuate all the time. Not only that, but there are two types of antibodies TPO and Tg. They have only tested the TPO. The Tg could be positive. You would need at least three negative tests to rule out Hashi's. But, given the sudden rise in your FT3, testing the antibodies was a logical thing to do - to anybody that knows anything about thyroid, anyway.

  • You need to know results for TSH, FT4 and FT3 at every test.

    Do you also have high thyroid antibodies? You need to know. Did GP ever test these? If not ask that they are tested.

    If antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

    Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

    Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. If they are too low they stop Thyroid hormones working.

    Have these been tested, if not ask that they are. Always get actual results and ranges.

    Despite that vast list of tests, these do not appear to have been tested.

    Your thyroid blood tests show TSH is low hipster this is virtually irrelevant when taking Levothyroxine. The important tests are FT4 and FT3.

    FT4 OK

    FT3 is too high in first test - 8.4 (3.8-6)

    Would suspect a Hashimoto's flare when as the thyroid breaks down it dumps a lot of hormone

    Second set of tests no FT3 test which is useless

    If you can't get full thyroid and vitamin testing from GP

    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 money off offers.

    All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH

    With Hashimoto's then hidden food intolerances very likely to be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

    thyroidpharmacist.com/artic...

    thyroidpharmacist.com/artic...

    amymyersmd.com/2017/02/3-im...

    chriskresser.com/why-changi...

    scdlifestyle.com/2014/08/th...

  • Thank you so much for you advice.

    Since my symptoms in June and worsening in august, I've eradicated Gluten from my diet completely, Understandably i know its not a quick fix. Im going to book another appointment and request a correct blood test, Luckily my normal doctor is quite open to ideas/information and is usually happy to grant my request.

    Ive also been recommended to an auto immune and allergy centre called Celestine Clinic from various work colleagues regarding my thyroid. My appointment here is on the 17th of oct, As they specialise in auto immune diseases im hoping this is my last resort to feeling normal again.

  • Hashimoto's is as much about the gut as the thyroid (or more so).

    The Thyroid Pharmacist website has masses of info about Hasimoto's, much of it diet and nutrition

  • Thank you SlowDragon, Your advice has been second to none!

  • As per your recommendation, I paid for my own test and here are the results.

    ENDOCRINOLOGY

    Thyroid Function

    THYROID STIMULATING HORMONE 2.24 mIU/L 0.27 - 4.20

    FREE THYROXINE 13.2 pmol/L 12.00 - 22.00

    TOTAL THYROXINE(T4) 97.3 nmol/L 59.00 - 154.00

    FREE T3 5.02 pmol/L 3.10 - 6.80

    THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00

    THYROID PEROXIDASE ANTIBODIES <9.0 IU/mL 0.00 - 34.00

    HAEMATOLOGY

    Vitamins

    VITAMIN B12 228 pmol/L 140.00 - 724.00

    FOLATE (SERUM) 18.74 ug/L 2.91 - 50.00

    BIOCHEMISTRYInflammation Markers

    CRP - HIGH SENSITIVITY 0.4 mg/l 0.00 - 5.00

    Iron Status

    FERRITIN 300 ug/L 30.00 - 400.00

    I must say though, since stopping my levothyroxine and changing the foods I eat I feel better In myself.

    I still feel the cold, have dry skin and hair seems to be thinning.

    In brief, the consultant basically said that all is fine, TSH is in the upper half of the range, and recommend that people feel better when it’s below 2.

    And All Vitamins are good too...

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