I have been very grateful for your advice before. I posted late last year about not feeling better.
I have been to the GP in December and had three lots of blood tests since then(!) and my next appt with GP is 20 Jan. (I have also consulted a menopause clinic who recommend starting HRT. The GP said in Dec that she did not think HRT would help with my symptoms - she is working towards ME CFS diagnosis.
I have realised they have not repeated the folate/B12 and Vit D despite being prescribed supplements for these in Sept.
My thyroid results are "borderline".
19.12.24:
TSH: 0.45mu/L (0.27 - 4.2)
T4: 20pmol/L (12.0-22.0)
3.1.25
TSH: 0.43mu/L (0.27 - 4.2)
T4: 19.9pmol/L (12.0 - 22.0)
I have "abnormal" and "abnormal expected" results for what appear to be inflammation markers (raised ferritin, white blood cell count, neutrophil and ESR).
They tested for three different antibodies including for pernicious anaemia and rheumatoid factor and these were all negative.
I have been off work for almost 6 weeks now and still not feeling any different.
I take 100mcg lego daily (properly now)
5mg folate (prescribed)
Vit D (OTC)
Your thoughts and advice will be greatly appreciated.
Thank you
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Tired2022
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FT4 is 79% of range. Assuming you allowed 24hrs betwen test & last dose you have a small amount of room for an increase.
What time of day was the test taken?
Suggest you push GP to retest vitamins. GP will only do a serum B12 test so it might be an idea to buy a private test and see where your active B12 level is.
Have you tried any dietary changes such as strictly gluten free or dairy free?
I followed the advice on here about taking test first thing 24 hours after last meds. I was actually wondering if I was overmedicated. I thought that was why they had marked the test "borderline". I feel like I have no idea what I'm doing.
I am gluten free. I found this made a huge difference. Dairy free didn't make a difference.
I will definitely ask for re-test vitamins - I'm so surprised they didn't do that. Unless I can find a private way to get a result before my GP appt on Monday!
"I was actually wondering if I was overmedicated. I thought that was why they had marked the test "borderline"
the thyroid tests are marked borderline as in 'borderline overmedicated as TSH borderline low , and fT4 borderline high' .
this doesn't necessarily mean you are overmedicated or anywhere near it ( unless you have symptoms of overmedication ), and many of us on here would happily try a small levo increase with those levels...... but you need to be aware that an NHS GP is unlikely to agree there is room for a dose increase, due to how close to the bottom of the range the TSH result is.
Given your high-ish FT4, on your low dose of levo, I suspect you're a poor converter and that your FT3 is low. So, you really need that tested.
folate/B12 and Vit D despite being prescribed supplements for these in Sept.
When doctors prescribe nutrients, they tend to prescribe the cheapest and least bio-available forms, and not enough. And they don't tell you about the co-factors.
If you are taking folate and/or B12 you should also be taking a good methylated B complex. The Bs all work together and need to be kept balanced.
If you are taking vit D, you should also be taking vit K2-MK7 and magnesium and they all work together.
It's three things mainly and I think they all bounce off each other to make it worse.
- I am so tired - it doesn't matter what I do. I have tried resting, varying my work pattern, taking time off work (currently not working). I have gradually ended up stopping doing various activities one by one until I am practically housebound.
- I can't think. My job is to assess children and write reports. I can't organise my thoughts properly to write reports.
- I am so stiff. When I wake up in the morning, I have to loosen up in order to get out of bed then a bit more to get downstairs. I used to do laundry and empty the dishwasher first thing. I never noticed the bending and stretching involved. I need to warm-up to do this. Showering is hard to raise my legs to step in, raise arms to wash etc. I find it all exhausting. Often I am not in the shower til 3pm as I do something for 5 mins then rest for half an hour.
It is getting worse. A year ago, I was tired and struggling to think, but I wasn't in pain and was holding down full time work, caring for two disabled teens and my dad was in hospital and I could still make time to meet friends, cook food and stay on top of household tasks.
It has been getting gradually worse over last 2 - 3 years but was originally explained as underactive thyroid then vitamin deficiencies and it just seems like whatever they find wrong and try to treat, I am just getting worse.
Be grateful for any insight. Apparently a diagnosis of ME CFS is a write-off and there will be no help with getting back to work.
It could be Fibromyalgia, certainly the stiffness is very familiar, normally chronic fatigue/ME follows a virus or infection, did you have covid, Epstein Barr or flu before symptoms started? However it could just as easily be low nutrients or low T3.
You are right to be cautious about ME/ CFS diagnosis, its a cop out for many people. It should only be reached once other conditions have been ruled out, unfortunately too many doctors leap on it far too quickly. Its not curable, or even treatable, it gets you out of the door/ off the waiting list and will then follow you around for the rest of your life and everything will get blamed on it, not matter what it is.
CFS/ME is a diagnosis of exclusion, ie everything else has been excluded. In my experience of NHS its rarely diagnosed correctly or in sufficient depth. I wouldnt accept it until far more testing has been done.
I personally think hrt is worth a try. It's not a complete fix but likely to improve some symptoms or take the edge off. That morning stiffness and then related soreness and stiffness was definitely amongst my perimenopause symptoms and hrt helped soooo much.
I do also get muscle tiredness and soreness from one or more other issues but I can't imagine dealing with that without my hrt being part of my treatment.
Our body is complex and seems often thete are many things to work on at the same time. Hrt isn't a magic cure all but definitely can help improve things.
Hi, have a read of my reply to someone else today.
What you describe is typical for peri/menopause.
It's so difficult when we also have thyroid issues as symptoms can be so similar. I didn't have a clue!
Another thing, testosterone banished my brain fog, all my morning aches and pains, feeling like an old woman as I'd get out of bed, gave me energy and am now exercising regularly and just an overall well-being feeling.
Do you always get same brand levothyroxine at each prescription
Would suspect that your Ft3 is low
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
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
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Or if you can get GP to test vitamin levels
Randox FULL thyroid test including both thyroid antibodies just £31
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:
I feel certain I could’ve got a ME/CFS diagnosis if I’d had the energy to pursue it.
I’ve had years of fatigue. Two weeks ago I had awful fatigue, I was on too much thyroid meds. I had it on too less. I’ve just got to optimal and my fatigue has gone. All my symptoms are shifting. I’ve been busy today from 10am to 6pm without crashing! It’s unreal.
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Test results
Newbie has blood test results
High T4 - Test Results
Test Results
blood results as promised
