Can anyone help with my blood results? - Thyroid UK

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Can anyone help with my blood results?

gisa12 profile image
21 Replies

I haven't posted for some time but as i'm still having ongoing health issues i thought I would post my recent tests results, maybe someone can help.

TSH 2.71 0.35 - 5.00mu/L

FT4 11 9.00 - 22.00 pmol/L

FT3 3.4 2.30 - 5.10

B12 465 200.00 - 910

Vit D 96 50.00 - 200.00nmol/L

I have been referred to a Haematologist as my white blood count is only 2.8 and neutrophils 1.2. My blood test also showed positive for Epstien Barr Virus and CMV which was never noted before by my doctor. The Endo has referred me back to a endocrinologist who says that my thyroid is normal. I am now waiting to go for further tests with the Haematologist. CFS clinic has said I am not needing treatment but has offered me guidelines on managing fatigue. My last test for folate was a year ago and it was 8.1 ref 3.00 - 20.00ug/L and ferritin was 89 ref 10.00 - 200.00nmol/L. I take an assortment of Vitamins and minerals(Dr Myhills Multi mineral Mix) also D-Ribose, l-Carantine and Coenzyme Q10 as recommended by the NHS CFS clinic. At the moment I'm feeling exhausted but managing to work butI can be ok for a few months then suddenly become ill within a few hours and have all the symptoms of being Hypo, but the symptoms are very similar to CFS. I am not currently taking any thyroid meds as the Endo advised me to stop the NDT I was taking. Any advice would be welcome.

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21 Replies
SeasideSusie profile image
SeasideSusieRemembering

Gisa

Are those thyroid results from when you were taking NDT?

Why has your endo said to stop your NDT?

With those results you are undermedicated. Hypo patients generally feel best when TSH is down to around 1 or below and when on NDT then FT3 is usually in the upper part of the range.

gisa12 profile image
gisa12 in reply to SeasideSusie

No that was after I stopped. He said I could cause numerous health problems as I didnt need thyroid medication but he was willing to give me thyroxine to help with the chronic fatigue. I said I was happy with the WPthyroid NDT but he wouldn't give me a prescription for it.

SeasideSusie profile image
SeasideSusieRemembering in reply to gisa12

Gisa

"as I didnt need thyroid medication but he was willing to give me thyroxine to help with the chronic fatigue"

What does he think levothyroxine is then?

If it was the endo who said that then I would run away, very fast!

What were your results when on NDT?

What were your results before you started taking any thyroid hormone?

gisa12 profile image
gisa12 in reply to SeasideSusie

My problems started quite a few years ago when my TSH was 5.6 that was when I was diagnosed with "probable CFS" as it wasn't a proper diagnosis at the time. I don't have all my blood tests from then as I was still trusting my doctors to manage my health but at that time my B12 was only 220. I knew that was low as my Mum had pernicious anaemia. Thats when I started looking to the internet for advise.

My results when on NDT were TSH 1.76; T3 - 4.4; T4 - 11.7

SeasideSusie profile image
SeasideSusieRemembering in reply to gisa12

Gisa

The TSH of 5.6 meant that you were hypothyroid but doctors generally won't give a diagnosis until TSH reaches 10 or maybe if FT4 is also below range or antibodies are raised.

You haven't given the ranges for your results when on NDT (we need them to interpret results as they vary from lab to lab) but when talking NDT it generally lowers, even suppresses TSH, tends to lower FT4, and FT3 should be in the upper part of the range if that is where you feel best. Those results look like you were undermedicated on your dose of NDT and you should have increased it.

Epstein Barr virus is often present or a trigger for hypOthyroidism (see Dr Peatfield's book Your Thyroid and How to Keep It Healthy).

None of these doctors are helping you, they are all keeping you ill.

gisa12 profile image
gisa12 in reply to SeasideSusie

TSH 1.76 0.35 - 5.00 mu/L

T4 11.7 9.00 - 22.00 pmol/L

T3 4.4 2.60 - 5.70 pmol/L

Thanks for the info, I will check out Dr Peatfield's book

SeasideSusie profile image
SeasideSusieRemembering in reply to gisa12

As I expected, so you should have increased NDT.

ShootingStars profile image
ShootingStars in reply to gisa12

Oh my goodness, what? You have the above low thyroid levels, symptoms of hypthyroidism and the doctor took you off medication? Then he has the nerve to tell you he's prescribed thyroxine for chronic fatigue?? So, boost your thyroid hormones, but he's not doing it for your thyroid? That doctor is so incredibly not smart! This is horrible medical care and treatment.

Did you ever get both of your thyroid antibodies re-tested since the testing over two years ago?

What SeasideSusie said, run away very fast! I'm going to add "very, very, very" to that!

gisa12 profile image
gisa12 in reply to ShootingStars

I haven't has my antibodies tested for 4 years. The CFS clinic occasionally treat Chronic Fatigue with low dose Thyroxine. My doc says I have a low grade viral infection/CFS but on that diagnosis I convinced my doctor to give me a trial in 2016 that was ok for 4 months. I was then given a different brand which didn't agree with me, so I switched to WP thyroid that I bought on the internet. As the company are out of stock and have been for some time its now only available through a few pharmacies in the UK who still have stock but only on precription only. I have tried everything but my doctor and the endocrinologist will not prescribe it, not because they can't but because they don't think I need it. But it definitely worked for me. I've now switched docs who still won't prescribe it but has agreed that most people would feel better with a little bit of thyroxine !!! One day the NHS will wake up and realise that they are not helping

Jazzw profile image
Jazzw

Your endo is going to cause numerous health problems - he’s an idiot. No wonder you’re feeling unwell.

How much NDT were you taking before you came off it?

gisa12 profile image
gisa12 in reply to Jazzw

Only 1 grain day. I've now ordered some ERFA hopefully that will agree with me.

MrsRaven profile image
MrsRaven

Just another example of the terrible and criminal ignorance of these so called professionals. Honestly, youre better off ditching the lot of them and getting yoir advice from this forum.

gisa12 profile image
gisa12 in reply to MrsRaven

My thoughts exactly.

janeb15 profile image
janeb15

Hopefully your health can be sorted out with better thyroid replacement, but if not are you aware that EBV and CMV are often associated with Lyme Disease for which there is no reliable test on the NHS in the UK. Chronic Lyme Disease and other chronic infections (EBV, CMV, HHV6, Mycotoxin illness etc.) are frequently misdiagnosed as CFS or fibromyalgia in the UK, and can affect all endocrine function including thyroid function. This was the case with my daughter and we had to go to the USA for a correct diagnosis and treatment. I suggest that you check out this site: lymediseaseuk.com/ Jane x

gisa12 profile image
gisa12 in reply to janeb15

Thanks for the info Janeb, I will look do a bit more research into Lymes.

ShootingStars profile image
ShootingStars in reply to janeb15

Most people have encountered viruses EB and CMV by the time they are adults, independent of Lyme bacteria. It’s those with a compromised immune system that have chronic infections or excessively high antibodies. HHV6 can also be independent of Lyme bacteria.

Fatigue is a symptom of thyroid disease and autoimmune disease. It is a sad shame that doctors would misdiagnose thyroid disease with CFS when the correct interpretation of thyroid bloods often shows low thyroid, as in the case of gisa12.

janeb15 profile image
janeb15 in reply to ShootingStars

We made the mistake for many years of believing that my daughter's ill health, fatigue, fibromyalgia and other symptoms were due entirely to poor thyroid function and this was indeed confirmed by private UK doctors and one in Belgium. However, they were wrong and we were wrong. None of these "thyroid experts" was able to make her better. In her case, as in the cases of many others whom we've now met her thyroid dysfunction was merely a symptom of much deeper and more complex problems.

Sadly doctors in the UK do not have the knowledge or expertise to diagnose stealth infections, and are not intereseted in looking for them. It is much easier to tell the patient that they have CFS for life.

It is in fact those very chronic infections that can compromise the immune system because they are rarely detected in the UK due to inadequate testing and they can hide in body tissues to create increasing havoc. EB, CMV and HHV6 may well have been encountered by most adults, but not necessarily eradicated as suggested by UK doctors. That's when the opportunistic Lyme infection/coinfections/moulds and mycotoxins move in and cause problems from the brain to toe including low thyroid function.

It is way too simplistic to suggest that "correct" interpretation of thyroid tests will give the right answers. It is often MUCH more complicated than that as we and many others have discovered.

I wish it were otherwise, but sadly it is not, and too many people in this country are left incorrectly diagnosed.

Hopefully gisa12 will find the answers she's looking for with better thyroid replacement as I said before, but many, many do not, and I feel that is my reponsbility to point out to her and anyone else in a similar situation that there are other possibilities. I know how desperate people are for answers and to regain their health.

My daughter is thankfully now recovering, but no thanks to thyroid replacement or thyroid doctors, but because she was properly diagnosed and treated.

Jane x

gisa12 profile image
gisa12 in reply to janeb15

Thanks for the info Jane, I'm glad your daughter is on the road to recovery x

janeb15 profile image
janeb15 in reply to gisa12

Thank you, and I wish you well with your recovery too. Jane x

janeb15 profile image
janeb15 in reply to janeb15

Further to my responses above the following may be of interest to you as well as to many others on this site whose doctors may not be aware of the body's response to Lyme Disease, just one of the chronic infections that can devastate lives. Jane x

lymediseaseuk.com/2018/05/1...

p.s. This award winning organisation was set up only 5 years ago by someone who was herself diagnosed with thyroid disease, but discovered that Lyme Disease was at the root of her illness.

You might also like to check out this information by Kent Holtorf, one of Thyroid UK's advisors. holtorfmed.com/lyme-disease...

G1nny profile image
G1nny

I’m so sorry I agree doctors lack a lot. I know nothing about thyroids BUT I do know something about b12. Mine was 435 and I was exhausted. Then a few months later still in range at 235. Also my mcv was high. My doctor wanted to rub numerous tests I said no I’m taking b12 for 4 months first. Everything now back to normal and I feel great. I also have found a new doctor.

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