Help with test results

[Maughany]

Hi all

This is my first post and I would really appreciate your thoughts on my test results. First a bit of context. I am a 49 year old female and I have been struggling with a range of different symptoms for some considerable time.

I first went to the doctor with crushing fatigue, constipation, cold sensitivity, tinnitus, muscle aches, alcohol intolerance and irregulars periods in 2016. I was sent for some blood tests and was told by the doctor that the results for my thyroid were borderline for an underactive thyroid. However she didn't feel it was enough to warrant further investigation. She said she had recently been diagnosed with an underactive thyroid and she was almost in a coma when they realised what the issue was. To be honest, despite my symptoms, I left the appointment feeling a bit foolish and just thought I needed to pull myself together.

I continued to get the symptoms on and off but did my best to push through and ignore them. A couple of years later, alongside some of the original symptoms, I started developing pins and needles and weakness in my hands particular in the mornings. I visited the doctors again and this time they suggested I had fibromyalgia and gave me a leaflet to read. I wasn't convinced of this diagnosis but didn't push it further.

For the last 18 months my symptoms have continued to get worse. I now also have awful brain fog which is affecting my ability to concentrate on my work, anxiety, mood swings, headaches, dulled hearing, visual disturbances and even problems with my vision. I can no longer drive at night due to my sensitivity to head and street lights. My worse symptom is constant joint and muscles pain. It can hurt just to walk and even when I am just lying in bed. I feel like my body is constantly under attack.

I am a very fit individual and used to work out 6 times a week doing bootcamps, weight training and hit sessions and have been doing so for the last 7 years. I can no longer work out at the level I used to. Running feels like wading through treacle and I no longer have the level of stamina I previously had. If I do work out, then I have muscle and joint pain for days after which can be crippling and doesn't make it worth it.

Originally I put this all down to perimenopause/menopause symptoms. I have now been on HRT for 7 months and it has made no difference.

I recently went back to the doctors and she ordered a range of blood tests and x-rays. She included tests for Rheumatoid Arthritis but the blood tests have come back negative. I am awaiting the results of the x-ray. The blood tests did however indicate that again my thyroid was borderline and that I should have another blood test in three months. I have been told that the doctor will follow up with me in a month. After my last experience with the doctor regarding my thyroid, and reading some advice on this forum, I decided to also have some private tests done to look at my vitamin levels and antibodies.

Here are my blood test results which were taken at 8am after fasting.

Vitamin D (25 OH) 83 50 - 200 nmol/L

Magnesium H 1.0 0.7 - 1.0 mmol/L

CRP <0.60 <5.0 mg/L

Ferritin Haemolysed *

Serum Folate Haemolysed *

Active B12 103 37.5 - 150 pmol/L

TSH H 5.57 0.27 - 4.20 mIU/L

Free T4 14.6 12.0 - 22.0 pmol/L

Free T3 4.6 3.1 - 6.8 pmol/L

T4 Total 88.6 66 - 181 nmol/L

Anti-Thyroglobulin Abs 18 <115 IU/mL

Anti-Thyroidperoxidase abs 19.5 <34 IU/mL

Mean cell haemoglobin 32.8 27 – 32.2 Above high reference limit

I have asked my doctor's surgery for the results of my previous test in 2016 but they said the numbers weren't recorded just that they were borderline.

Could any of these results explain my symptoms even if I am just borderline? Also I would appreciate any advice on how I take things forward with my doctor from now.

I am sorry that this post is so long but I thought it would be helpful to give you the full context.

Thanks in advance for any advice or experience you are able to share.

Elizabeth

[SlowDragon Administrator]

welcome to the forum

Results certainly show thyroid is struggling

TSH over range

Free T4 (fT4) 14.6 pmol/L (12 - 22) 26.0%

Free T3 (fT3) 4.6 pmol/L (3.1 - 6.8) 40.5%

Very low Ft4 and low Ft3

Is private test company repeating folate and ferritin tests

Have you had iron and ferritin levels tested at GP

High MCH suggests possibly low folate

medicalnewstoday.com/articl...

High MCH scores are commonly a sign of macrocytic anemia. This condition occurs when the blood cells are too big, which can be a result of not having enough vitamin B12 or folic acid in the body.

Suggest you consider full iron panel as well

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Negative thyroid antibodies

Worth considering an ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[Maughany in reply to SlowDragon]

Thank you for taking time to respond and for providing so much information. I will certainly read through it all.

I have followed up with the company about retesting my folate and ferritin. I have not had these tested by my GP. I will definitely book a full iron panel. Thank you for the tips on taking the test.

[Bertwills]

Hello & wellcome to the forum. You’ve come to the right place. I’m afraid you’ve suffered what many of us here have too. You’re hypothyroid & probably have been for sometime.

You private blood test shows your TSH level is above range, it’s not borderline at all. Unfortunately your free T3 & T4 don’t show the same picture. Also the NHS generally don’t treat hypothyroidism until your TSH reaches 10, which is cruel as symptoms can be extensive well before.

What time was your test done? It makes a difference to the all important TSH reading. The ideal is as early as possible ie before 9am & having just drunk water, no food. You might find this method gives you a high enough TSH for treatment. The NHS will only look at the TSH result which might work in your favour!

Maybe try with a different GP? But don’t show them your T4 & T3 results as that will stop any hope of treatment. Otherwise you could try Roseways Labs who do private consultations on the phone for £50 .They may help you. Post again for more info maybe or Google them. They’re a prescribing pharmacy I’ve used successfully.

[Maughany in reply to Bertwills]

Hi Bertwills thanks for the welcome and for replying.

I did the test at 8am and had just drunk water before so I am guessing that my TSH would have been at its highest. I will change my follow up appointment to a different GP and see how they respond or what they suggest. If they aren't sympathetic to the issue then I will definitely look into a private consultation.

Yes, it does feel very cruel that when you have symptoms that are significantly impacting your well-being that you are dismissed until you reach a certain number. I hope you have found a balance with your thyroid issues.

[Bertwills in reply to Maughany]

I manage but still struggle with various problems. I’m on T3 only as I never feel well on T4. Tried many times, even combo doesn’t work for me. Good luck with NHS but remember there are other ways if you can afford it. It’s got so much easier & cheaper now.

[pennyannie]

Hello Maughany and welcome to the forum :

So does your doctor think it correct that you too need to be ' almost in a coma ' before getting diagnosed and treated for hypothyroidism ?

One would think a fellow sufferer and your doctor ' to boot ' would have ensured your treatment started long before now.

Sadly maybe s/he is constrained by guidelines and waiting until your TSH reaches 10 - treatment used to be commenced when the TSH reached 3 - though you likely start suffering symptoms when the TSH creeps over 2 and yes, the symptoms are insidious and talked away until they get so bad - you start talking and trusting strangers on a forum rather than your doctor.

In someone without a thyroid health issue -

we would expect a TSH at around 1.20/1.50 with a T4 running at around 50% through it's range with the T3 tracking in percentage terms just behind the T4 :

Your TSH is much too high and signalling you need more thyroid hormones in your blood stream and since the body protects T3 levels over T4 levels -

your T3 and T4 are inverted - and the wrong way round - showing your thyroid struggling -

as your T3 is at around 40% and higher in the range than your T4 which is at around 26% :

basically you are ' running on empty ' without sufficient T4 in your system to allow for more conversion into T3 - as and when needed - with T3 being the active hormone that runs all your bodily functions :

NHS doctors are not obliged to accept private blood test results but hopefully this forces your doctor to action your need for a prescription of T4 - thyroid hormone replacement as for some reason your thyroid is not able to support you enough with all that you wish/ or are doing.

It sounds as though you know you can't exercise as you once did - if doing anything - I'd slow right down and take away any additional stress you are putting your body until you are optimally medicated on an option of thyroid hormone replacement and feel you have back some stamina and power to have your life back to your normal.

[Maughany in reply to pennyannie]

Hi Pennyannie thank you so much for your response and for all the information provided. I have a lot to learn!

Thank goodness for this forum and for the kindness of well-informed 'strangers' - I already feel more knowledgeable and empowered.

You used the phrase 'running on empty' and you have hit the nail on the head about how I feel and through your post I understand better why.

Thank you for your advice on slowing down. I think I needed to hear that. I've been getting very cross with body and feel it is a defeat when I can't exercise like I want to. I need to realise that there is nothing in the tank to enable me to do it and that it is ok to take the break for a while. Exercise helps keep me balanced so I will just have to look at achieving that another way for now.

Hopefully my blood tests do force some action from my GP. I do feel nervous about what response I will get but I am going to remain hopeful for now!

[pennyannie in reply to Maughany]

Okey doke - all you can do is to try and talk through how you understand these blood tests - and see what reply is made :

Rather than put those trainers back on - read this book written by a doctor who resigned from the medical profession as he wasn't allowed to treat hypothyroidism as he believed - since he too had the disease -

Barry Durrant-Peatfield writes in an easy to understand manner and he wrote his book for patients to better advocate for themselves in Your Thyroid and How To Keep It Healthy -

Thyroid UK - the charity who supports this forum have various books available on their Library page -as well as much more information about all things thyroid that you may well find of interest - thyroiduk.org

No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - so we need to see these core strength building blocks strong and solid and to build back with supplements where needed.

Your active B12 and vitamin D would be better if both were around 125 - and we are waiting on the ferritin and folate -

Keep us in the loop -

[Sleepman]

Sorry you are suffering.Your thyroid antibody tests do not look high so likely not autoimmune issues, this is good. Others please correct me if I am wrong. I know they fluctuate

Many other issues can show up when thyroid levels are low, like you are having. My unique thing was I was cold, my under tongue temperature was low <36C.

Also B12, D, folate and Ferritin need to be at good levels.(B12 and D look okish above)

I think B12 can look ok on blood tests but you can still have b12 defficiency in cells ... Pernicious Anemia forum is a good source of info. Some rare cases look fine on other b12 tests too but when injected with b12 recover ...

Are you taking biotin, one of b6 or b7? . At high levels it can impact your thyroid results. You stop a few days before testing.

Have they done any adrenal hormone checks ?

Celiac / gluten can have a lot more issues than gut problems? I get brain fog and fatigue now. I did not show up on celiac blood test, and used to have gut issues before stopping.

[Maughany in reply to Sleepman]

Hi Sleepman

Thank you so much for taking the time to respond.

I really had no idea how many symptoms thyroid issues could cause. Cold under the tongue does sound very unique!

I will wait to see what results I get for ferritin and folate when I am retesting. I have been supplementing with vitamin D for some time now. No, I don't take anything with biotin in it but thanks for letting me know that impacts thyroid tests. I will bear that in my in the future.

You say my vitamin D and B12 look okish. Would it be worth supplementing my B12 too.

No, I have had any adrenal hormone checks. I will look into this. Also very helpful information on Celiac/gluten. I shall explore this too.

Thanks again.

[Sleepman in reply to Maughany]

I measured under tongue as it was good core temperature. Low thyroid levels make you cold.

They could not measure my T4 and my TSH was 78 at the start. My body will have been prioritising T3. NHS do mot measure.

Ask doctor for trial on T4?

I thought NHS rules were if TSH under 10 it is two tests over 5 before starting.

The second is to confirm prior to lifelong treatment. Pethaps with your private results and history they will on need 1 more high TSH blood test?

It takes many months to get to right T4 dose. It takes 8ish weeks for levels to stabilse then you need blood tests then a dose change.

You will need to be gentle on yourself. I remember 2 Septembers where all I did at weekends was dose and watch telly after moderate work.

I was fine within about 3 months of starting meds. Then you are optimising levels.

In the mean time your body will be repairing itself once it gets higher T3 levels.

If you can do private blood tests.

Monitor my health is NHS lab and do tsh t4 and t3 for about £30. A few of these should confirm if you are a good coverter of t4 to t3.

I would be asking what has caused it too. You do not look autoimmune type.

Good luck

[klr31]

Why oh why don't these doctors put people on thyroxine sooner!