Hi everyone, I just wondered if anyone has ever been misdiagnosed with CFS and actually they have hypothyroidism? I got private bloods done May last year and also February this year.
TSH May 5.57 Feb 8.36
Free Thyroxine May 13.1 Feb 12.1
Free T3 May 4.85 Feb 4.57
Thyroglobulin antibody May 626 Feb 572
Thyroid peroxidase anti May 204 Feb 215
My fatigue has got so much worse and I have really intense depression. I feel more unwell in general. Concentration is terrible. My heart rate is pretty slow in 50’s sometimes even late 40’s if I’m relaxed and not doing anything. Sometimes I feel like I’m gonna stop breathing. I just wonder whether this could be more underactive thyroid and not CFS. The symptoms are so similar. My Endocrinologist said last May that treatment wasn’t needed unless TSH goes up to 10.
Any feed back would be much appreciated.
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Cade83
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Likely you saw a Diabetes specialist, not Thyroid.
Your results clearly show you have autoimmune thyroid disease (Hashimoto's) and are in desperate need of starting on Levothyroxine
See GP with these results and request that vitamin D, folate, B12 and ferritin are tested
These are frequently far too low and need supplementing to improve
Great pity you didn't include vitamins in Medichecks testing.
Low vitamins tend to keep TSH low
Your FT4 is right at bottom of range.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Your endo is so very, very wrong. What he means is that the NHS doesn't want to treat people until their TSH reaches 10, but in the real world, you are hypo when your TSH gets to 3. He is torturing you out of ignorance. Ask for a second opinion.
I would even go so far as to say that CFS and hypothyroidism have the same symptoms because they're the same thing. CFS is a syndrome, not a disease. A syndrome is caused by something. And, looking at those results, we all know what is causing it!
You have Hashi's and you are hypo. And, the guidelines say that if you have over-range TSH and antibodies, you should be treated. Your endo is useless. Get rid of him and find someone that knows something about thyroid.
Whatever happened to trusting Symptoms that patients present Dr's with ????? Why are Lab Values treated as be all ????? From my own experiences greygoose I was going around for Years with symptoms and plenty of them too only to be told my lab values where perfect . Does that make any Sense At All ??? Not to me . I feel had they caught my thyroid issues timely I would still have my thyroids in tact .
Because it makes life easier for them. If they had to listen to a long list of symptoms and know what they all possibly meant, they'd have to spend more time listening to patients. If they can just look at a screen and say 'computer says no', all their problems are solved! It's so easy. It takes skill to be the kind of doctor that treats by symptoms, and a lot of them have no skill at all. They're just body mechanics.
Yes greygoose so True . BIG PHARMA . GREED and M-O-N-E-Y . Patients well-being is somewhere on the lower totem poll . I'm really convinced they want a Sick and Dummied Down Society .
To help with your request to be started on Levothyroxine, the following article may help. It was published in Pulse magazine (the magazine for doctors) and is by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist.
Question 2 asks:
I often see patients who have an elevated TSH but normal T4. How should I be managing them?
Answer:
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat thyroid function tests in 2 or 3 months in case the abnormality represents a resolving thyroiditis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune thyroid disease - the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms, some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow up.
Treatment should be started with levothyroxine in a dose sufficient to restored serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 2 to show your doctor.
Your test has been repeated, your TSH has risen, your FT4 has lowered, you have symptoms of hypothyroidism, both antibodies have been raised on both tests confirming autoimmune thyroid disease aka Hashimoto's. You tick every box, you should be started on Levo.
Thank you so much for the replies, I really thought I was going insane. I’ve already emailed my endocrinologist my results but haven’t had a reply yet. I may look for a local endo who specialises on thyroid disease.
I’m really starting to freak out to be honest. I feel so ill but I’m getting really bad anxiety because I’m worrying so much about it. I have doctors next week but I’ll try getting an appointment Monday I think.
As far as I can tell from the mountains of research I've read, CFS is a constellation of symptoms arising from hypo metabolism caused by hypothyroidism. The easily overlooked thyroid gland is the keystone to cellular energy production. That your endocrinologist thinks your thyroid is fine because some lab results came back "fine" only shows the depth of ignorance of trained medical professionals.
Laboratory values have two flaws:
1. People who are undiagnosed hypothyroid are skewing the results for the euthyroid range, making hypothyroidism look normal.
2. Each individual has a set point of healthy TSH, FT3, FT4. Your thyroid function is not "healthy" simply because your numbers land within this extremely wide range that's been overstretched by the addition of hypothyroid people.
I sometimes think nearly every physician on the planet must have slept through the lectures on Thyroid in medical school. I have read some of the textbooks and they do present a lot of mind-numbing detail that's not really germane to our treatment. Until physicians (and textbook authors) actually get on the journey of daily suffering with thyroid disease, they will remain careless about providing the treatment necessary to restore healthy functioning of all bodily systems.
Without a healthy population, a nation cannot expect to remain strong and prosperous.
I don't know what came first ? The Chicken or the eggs . But I had CFS and so did my son and we both ended up having thyroid issues . Consequently I had TT and my son has Hashimoto's .
Unfortunately in my case I developed a nodule and my thyroids needed to be removed . In my sons case It was under control from very early on . He is on T4 doing thankfully well . Hashi patients do Not do well with NDT . If T3 needs to be added synthetic T3 is a much better way to go .
Did anyone feel at times that they literally felt like they were dieing because of severe fatigue and anxiety? One part of you thinks you just need to sleep for a week and the other is like I’m gonna die. I know it sounds ridiculous but that’s how are feel right now. I had bloods taken today at my gp surgery for TSH and T4 because that what the doctor has asked for. So now I have to wait until Thursday for my drs appointment and hopefully bloods have come back by then.
So my bloods have come back from my GP and my TSH is 5.4 and T4 is 10.3. I know TSH is still high but when I go doctors tomorrow they aren’t going to do anything about it because it’s no where near 10. I’m losing my mind, I just don’t know what to do. Is medichecks accurate? Any advice would be great.
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