I’d like to share my story in the hope that it might help someone else. For as long as I can remember I’ve been battling chronic fatigue, pain, insomnia, bowel issues and been told there was nothing wrong because the standard NHS blood tests said so. I had been on this forum before as I had to assume that I was facing CFS/ME.
In the last 6 months my health began declining further and I went once more to my GP for help (in Feb). The tests came back normal again. She proceeded to prescribe me antidepressants and give me the phone number of a CBT service. A response probably linked to this page on the NHS site nhs.uk/conditions/medically... I look at this page now and I think the people behind it have a lot to answer for.
When my right foot attained this strange swelling and my shoes wouldn’t fit, I knew it was time to try harder to investigate. Some research taught me that there was more to thyroid health than the standard NHS blood tests. I wondered what I would find if I got a more extensive thyroid panel done. I stumbled upon one of these online blood test firms and a discount code for them. I sent off my sample and expected to discover I’d wasted my money. Instead I finally had my answer. My blood was riddled with anti-thyroid peroxidase cytotoxic antibodies. They’ve been there the whole time. Through every blood test alleged to be normal. My body is trying to destroy my thyroid and the NHS had been missing it all these years. I have autoimmune thyroid disease. Not CFS or ME. As you can imagine, I was quite angry. I literally stormed into my GP’s surgery, returned the antidepressants and beta blockers and handed over the private blood test results. My GP promptly offered to refer me to an endocrinologist. To be honest, I think he was frustrated that they’d missed this the whole time... but the point of this post is that some of you could be in the same boat. The NHS do NOT routinely check your blood for autoimmune anti-thyroid (or thyroid function disruptive) antibodies. If you haven’t already been checked, and you suffer relentlessly from fatigue, especially post-exertion, then insist that your doctor get these tests done. It also turns out that autoimmune diseases, including allergies, can produce antibodies which interfere with your thyroid markers, including the key one TSH. They can make it appear falsely normal. This also leads to your GP ignoring any other thyroid investigations.
I am currently waiting to see a consultant endocrinologist (7th June). I’m hoping to receive thyroid hormone replacement without further delay but I suspect the battle isn’t over yet.
I have also confirmed that I must now eat a gluten-free diet. I read this online and thought it would prove to be nonsense. Turns out, people with autoimmune thyroid disorders may have an immune system that misidentifies gliadin (the protein component of gluten) as tissue transglutaminase and creates antibodies which also attack the thyroid. I’ve now been eating gluten-free for 7 weeks and some of my symptoms have subsided. They didn’t subside for about 4 weeks, mind you. A blood test I took for the consultant, two weeks into my gluten-free diet, showed that my anti-thyroid peroxidase antibodies had literally vanished. Unfortunately I still have TSH blocking antibodies meaning my thyroid is still underactive.
If you can afford it, get the thyroid antibody tests done via one of the online testing firms. I used Thriva.
All the best and I guess I need to leave this chat area now as I am no longer suspecting CFS/ME.
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mcnaugha
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Hi. Glad to hear you've had a breakthrough. I think my story is heading the same way as yours. Suffering for years, finally my sleep clinic consultant noticed that in a recent blood test, I had plenty of thyroxine, but none of the hormone that makes the thyroxine, so finally I've been referred to an endocrinologist, who I see next month. This week I'm booked in for my Synacthen test.
Honestly, the thought that this thing, whatever it is that's ruining my life, might have treatment - it's they only thing keeping me going.
I'll give the online testing thing a go I think. Can't do any harm, and if it gives me something else to try then I'm all for it. Thanks!
If you enter the code HOMECHECK they will take £15 off, making the total cost £69.
I have to say though, if you’ve not done this before it’s a bit of an experience. It seems like you’ve got a lot of blood to get out. They supply three lancets and I thought they were being over-cautious. They weren’t. I needed all three because the first two clotted before I’d gotten enough out. They’ve got a video to help you. Have a bath or shower before the test or soak your hand in hot water right before to encourage blood flow to the hand. You can fill that little inch of blood. Just have kitchen towel or other absorbent material for the clean-up. They supply alcohol wipes and plasters.
By the way, I handled my insomnia or delayed sleep phase by taking diphenhydramine. That’s the blue packet Nytol. In the UK, it’s heavily controlled. In the US however, it’s off the shelf in bucket loads. So you can get it via eBay. It’s a first generation antihistamine and therefore isn’t addictive. I found that I had to take 125mg in the end at least 10hrs before I needed to get up. Although I took it for a decade and built-up to that from a 50mg initial dose. I can’t yet speak to the long term effects of this as I’ve taken it for a decade but do not know what impact it might have had on my condition. I’d like to think none. I don’t know why it is so controlled in the UK. I’d suggest giving it a go. Avoid caffeine after 12pm as caffeine can fight against this and leave you horribly drowsy but awake. I take it at 8pm for a 6am rise. If you take it late, expect to be drowsy in the morning. It’s half life is about 8-10hrs. So you want it gone by wake-up time. On eBay it may be called Sleep Aid or simply Allergy Medication but it’s the same drug in blue Nytol.
Wow amazing story, thank you so much for sharing this. It typifies the NHS approach to fatigue but it's fantastic that you took matters into your own hands and kept searching for answers. I'll be ordering one of these tests for myself! I wish you the best with your endocrinology appointment.
Hello, i am in hell hole, i went to gp who organised a blood test and he assured me that it included a thyroid test . When the results came back there was no sign of a thyroid test in it, so i went private cost 30 euros. Result t4. Lowbut above base tsh, same t3 lowish below base. Went back to gp who laughed said i was fine. I got very cross and argued with him saying i was ill and the test said it was not right. He said oh your tsh is fine. I said it is not tsh its t3 that counts. I have all the symptoms of hashimotos feel very tired and unwell. Now he has sent me to endocrinologist. He said. Y test says ok but he was sending me to neurologist to cancel that out, i once had M.E badly for a few years i know it isnt that, its making me more ill being disregarded
Sorry to hear that. I’m anxious as hell about what my endocrinologist will tell me. I really fear no treatment because my levels are in range.
They’re all trained to treat something they don’t have an answer for as a psychological problem. That’s probably what’s happening to you.
The FT4 can stand to be increased to the upper part of the range or above. They shouldn’t leave it low in the range when you have clinical symptoms.
Did you get tested for TPO/TPEX and TGAb? Also I got tested for the TSH receptor blocking antibodies which it turns out I have too.
I just read about a potentially faulty gene condition which can make your body bad at converting T4 to T3. There is a test for that too. The DIO2 gene.
No the only tests i had were T4 T3 and tsh, but what psychological? Thyroid trouble makes you depressed also in my case i have had antidepressants for years and never had physical symptoms like these.
The doctors can claim your physical symptoms are actually psychological.
It sounds like it would be worth trying the combined T4+T3 treatment. In the UK, Only a Consultant endocrinologist can recommend this treatment as it is not yet recognised as worthwhile due to lack of research evidence.
Hi! I hate to be the bearer of bad news, but Endo’s are a waste of time. My Thyroid Peroxidase Abs come back high a few months ago, so I was sent to an a Endocrinologist who said that there’s nothing wrong with me because my other thyroid results are normal 🙄 even though high antibodies indicate an autoimmune disease. He did refer me for a scan on my neck though as I have a Goiter. I am having that done next week.
Have you ever been tested for Lyme disease? Or ever recall having a bite and a bullseye rash? Maybe people are misdiagnosed with things such as ME/CFS, Fibromyalgia when it’s Lyme disease. Worth a thought.
I’m beginning to think the same about endo’s. Mine won’t currently prescribe because I’m too normal too. My FT4 swings back and forth around the border of the bottom of the “normal range”. Which he calls margin for error. I cannot see how it makes sense that the minimum amount of FT4 that might work for a 4’2” 6st human, would also work for a human who’s 6’1” 19.5st. You don’t need a medical degree to see the nonsense in that.
I’m now being sent for another 20 or so blood tests and being referred to a sleep apnoea consultant. He’s determined to check me for other explanations for my hypothyroid presentation.
I’ve insisted that he gets my next tests processed for Immunoassay interference too. My TSH is 2 and that’s a bit of a coincidence that it’s the figure that usually comes out for an autoimmune hypothyroid patient who is experiencing immunoassay interference. This is where the TSH is being artificially suppressed by the presence of other antibodies (usually anti-animal) that are binding to the test antibodies and preventing them from capturing the true amount of TSH. In one case, the TSH shot up to 8 after the serum was diluted. Although the antibodies usually involved here are mice, horse and rabbit... I have two cats and a cat allergy. So I’m hoping to discover that I’ve not got normal TSH at all but it’s possibly a long shot.
Another cause of normal TSH/FT4 is having faulty DIO2 genes. These are the genes that convert T4 to T3. Some research has shown that having one or two faulty copies of DIO2 can result in poor T4 to T3 conversion, particularly in the brain. However, as the thyroid is working adequately, test results will be normal. I forgot to mention this to him. I don’t know if the NHS even touches this with a barge pole. You can get tested for this privately. It costs about £80, not including any consultancy that they might insist upon. This condition tends to improve when patients are given combo T4+T3 therapy. As with all of this though, it may not work for everyone.
Hey man I'm so glad I've seen this. I've been going to my doctor for 2 years with flu like symptoms which are every day now. I changed my doctor 3 weeks ago so we started all the tests again which I had done with my old doctor. The only thing off was my thyroid which of which the TSH level was as high as 6.4 a year ago and went up and down from 6.4 to 4.8 but usually high in 5 blood tests. She immediately put me on Thyroxine 50mg so at least I have direction. In my mind over this 2 year period I was convinced I had CFS as doctor said I was depressed and gave me antidepressants but I know/knew I wasn't depressed. I was depressed cos I was always sick, not sick cos I was depressed.
Did you have flu like symptoms and food intolerances too?
I’ve had flu like symptoms from time to time. It’s so fluctuating. I couldn’t figure out the pattern... although everything besides energy level and mild pain has calmed down a lot since I went gluten-free. I do suspect I have other food allergies and intolerances. Sulphites being one of them.
Getting a tonne of blood drawn tomorrow morning. Going fasted, which an online doctor told me is important for thyroid tests. Previously, I’ve not been advised to fast.
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I am only pleased too know it's not all in my head.
How do I get a diagnosis?
Daughter with CFS