I’ve had many debilitating symptoms for around 7 years now, with the most notable ones being fatigue, brain fog and muscle aches. These symptoms ruined my university experience and grades, and are making working impossible atm.
When I moved to my uni town 4 years ago, I signed up for a new GP and asked them to help diagnose these symptoms. In all of those 4 years, I’ve NEVER seen a specialist. Ever. However, at last, after lots of pushing and pushing on my part, I finally got a diagnosis. ME/CFS.
Now, I feel this is a complete sham. The specialist diagnosed me with this incurable disablity OVER THE PHONE. Again, no specialist has ever seen me in person. Ive asked my GP to send me to an endo, a rheumatologist, and a neurologist, they have denied every request.
Anyway, a lot of my symptoms match an underactive thyroid. I had a bought of hair loss last year, I have trouble regulating temperature (even tho its may I was still using a hot water bottle at the beginning of the month), in fact I have all hypothyroid symptoms except weight gain and brittle nails.
Though I’ve never seen a specialist, I have had many blood tests, including thyroid tests. Both times my doctor said my levels were in ‘healthy, normal range’. I decided to check my lab results for myself and I’m not so sure.
In 2017, my serum free t4 was 10.8 pmol/L. At the time, the NHS’s ‘normal range’ was 10.3 - 22.7 pmol. my TSH was 2.06 mu/L.
This year, my serum free t4 was 11.7 pmol, however the NHS’s normal range has now changed to 11.1-22. I didnt have any TSH done this year.
My levels are clearly on the very low side, and I brought this up to my doctor, and he basically brushed me off and said its nothing to worry about, that my levels were fine. He told me just to accept my diagnosis of ME/CFS and stop chasing an ‘answer’. He refused further tests.
What do you guys think? I mean, by todays ‘normal range’ of 11-22, that means my t4 of 10.8 a couple years ago was under the healthy range? Is this something I should be worrying about?
I’m considering going to a private endo, but that would cost me around £600 for a thyroid test, which is a lot to me (my symptoms have put me out of work, i’m on benefits) so I don’t want to waste all that money if there is nothing to worry about?
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Froggups
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First step is to get FULL thyroid and vitamin testing done …..ideally by GP …..if not yourself privately
Always test thyroid levels early morning, ideally before 9am
Have you had iron, ferritin, vitamin D, folate or B12 levels tested ever …..can you add results
Are you currently taking any vitamin supplements or other medications?
What’s your diet like
Are you vegetarian or vegan
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Hello! Thanks for your response. I've had all my vitamins tested as well as every other blood test under the sun (need them before you can be referred to MEA specialists). My vitamins are fine, ferritin was on the low side at 32 but that has since been corrected.
My GP has tested my thyroid around 10 times in the past over years, has only ever done FT4, and I had TSH once. FT4 has always hovered around 11-12. My GP has REFUSED to do anymore thyroid tests except an antibody test which I'm hoping will get done soon, but I can't control what time the tests are booked for, I just have to take whatever is available to me.
I'm not sure on current. If I asked my doctor to re test me again, or recurrently like you said in your other post, he would laugh in my face and tell me to get out no doubt! But my ferritin was 32 in September, at the time my hair was falling out. Since then I've been taken 14mg of iron everyday and hair has grown back
I have just ordered the cheapest one with discount, thank you so much for so many different options though! My gp is providing the antibody test thankfully. I'm a bit intimidated to take my own blood, but atleast I'll finally have answers, I hope... so frustrating that GPs don't take full thyroid blood panels.
So it does sound like a thyroid health issue from what you have written but we need more information to be able to help you better.
Going Private doesn't necessarily mean anything useful unless you know who to go to.
In the first instance you can range all the necessary blood tests yourself, privately, and forum members will advise accordingly on anything that needs further investigation through an endocrinologist or specialist.
If you go into Thyroid Uk thyroiduk/org who are the charity who support this forum you will find a list of private companies who can run the necessary blood tests for you, some offering a nurse home visit to draw the blood for you.
We all need , first off, to run a full thyroid panel to include TSH. T3. T4. antibodies, inflammation, and ferritin, folate, B12 and vitamin D : commonly referred to as a thyroid bundle , or an advanced thyroid function test.
Sometimes there are discounts available but either way it's a lot less than going private and some else arranging the self same set of results and ranges.
Simply start a new post with your results and ranges and you will be talked through everything and further advice freely given - which i where we all start taking some control back of out health and well being.
You will also see an email link to Thyroid UK on another page, to ask for the list of patient to patient, specialist endos, and doctors, booth private and NHS who might be worth looking to for someone in your area.
“by todays ‘normal range’ of 11-22, that means my t4 of 10.8 a couple years ago was under the healthy range? Is this something I should be worrying about?”
Not exactly how it works- Ranges aren’t standard, different labs uses different ranges. You interpret each result by the given range so no, it doesn’t later become an under range result by applying a different range.
What is does show is that the FT4 is consistent low in both tests and what you don’t know is your level of FT3, and FT3 is said to often govern the majority of hypothyroid symptoms.
Arrange a private full blood test which can be done by posting a kit out to you and you sent back a fingerprick blood sample. That will cost a lot less at this stage then seeing an private endocrinologist who often will view results the same way GP might.
Your doctor telling you to accept you diagnosis of ME/CFS and stop chasing an ‘answer’. Is an appalling attitude.
Thank you for your response! Ah, thst has cleared it up! I did ask my GP why the normal ranges were different but he started going into an irritated rant that did not make any sense. He was being very nasty about the whole thing, so I'm going to try and change GPs. He did say he would send me for a thyroid antibody test and prescribe me synthroid if it 'makes me happy' but obviously that's not a full answer if I have a thyroid condition?
After I've done the kit and got my results, what do I do with them? Show them to my GP? As surely I'd need someone to interpret them and then prescribe me medicine if needed?
He possibly started ranting nonsense because he either didn’t actually know the real answer and didn’t want to admit he’s taught only to notice a “red flagged” results on lab report - which has instructions on what to do next. Or he didn’t want to take 2 min to explain. Sound like he was another one of those doctors who get offended when you dare question and not just accept what your told. Either way he sounds horrible - find another GP.
Share the results on here and members can interpret and advise on next steps.
Once you understand results and know what needed you can discuss with GP.
Not all GPs will accept private results (some are happy to add to medical record). Those that don’t - say they won’t accept responsibility of treatment based on what they imply are potential inaccurate results (this is an excuse - as many of the labs are used by NHS).
If they do refuse to proceed based on private results you have ground to insist they run their own.
After I've done the kit and got my results, what do I do with them? Show them to my GP? As surely I'd need someone to interpret them and then prescribe me medicine if needed?
First step is to find out what is going on by testing
Do test early Monday or Tuesday morning, ideally before 9am
Why Monday or Tuesday? I ordered the kit on Friday, so will likely receive it tomorrow afternoon, which means I'll have to do it on Wednesday morning and post it then. Is thst bad?
No need to go to activate Endo yet. But do get private tests of all thyroid markers to get the full picture - at least tsh T3 and t4 but antibodies as well and vitamins if you want to push the boat out. Then post here for advice.
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