I posted here a month or so ago about my initial diagnosis and have today got my bloods back. History below.
Test results: May (unmedicated)
Serum TSH level 7.63 mIU/L [0.27 - 4.2];
Serum free T4 level 12.5 pmol/L [11.9 - 21.6]
Serum vitamin B12 level 335 ng/L [197.0 - 771.0]
Serum folate level 2.2 ng/mL [3.0 - 20.0];
Serum iron level 15 umol/L [11.0 - 25.0]
Serum unsaturated iron binding capacity 37 umol/L [24.0 - 70.0]
Serum TIBC 52 umol/l [44.0 - 71.0]
Test results: June (unmedicated)
Serum TSH level 6.04 mIU/L [0.27 - 4.2];
Serum free T4 level 12.8 pmol/L [11.9 - 21.6]
Test results: August (8 weeks on 25mg Levothyroxine) . tests done fasted, early in the day (8.30am) before taking my Levothyroxine dose for the day, which I have been taking on an empty stomach with water at 8am, and waiting an hour before any food/caffeine.
Full blood count shows some other readings below reference levels - see image snip.
I am not feeling any better. All symptoms unchanged.
GP has reviewed test results today and issued a prescription for folate supplement, 5mg.
The rest of my results have been marked as normal and no further action required.
Levothyroxine was newly prescribed 8 weeks ago- this testing was supposed to be in support of a review of the Levothyroxine prescribing. Is it normal for a first medication review to take place without any patient input?
From what I have understood from this forum, these results are not “good” results- at best they are back to just hovering inside cut off points.
I guess I’m looking for some moral support/experienced view to reassure me that I am not being unreasonable with GPs to insist that a) they really should speak to patients and involve them in the review process, and b) that these results are not acceptable in any event!
Is getting folate levels sorted with supplements likely to tip the balance towards feeling better?
I will make an appointment tomorrow (assuming I can get past the online triage!), to discuss the results, but would be grateful for your thoughts on what I should be saying to the GP to advocate for myself.
I was desperately hoping that the next review would increase dose so that I might start to notice an impact and feel better.
I booked private bloods with medichecks for Monday morning to look at thyroid antibodies, T3 levels, vit D etc - all the stuff the NHS won’t test.
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CyclingMummy
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they should at least have asked how you feel on that dose . it's understandable that they just 'wave it through without asking' for a patient whose dose has been stable for a while and is feeling ok on it, but it's really not good enough for the first review after starting levo.
contact GP again , inform them symptoms not yet improved enough and discuss optimising dose with them . using this list of references ... all of them recommend GP's adjust dose to optimise treatment by keeping TSH below 2/2.5 in all patients on levo : healthunlocked.com/thyroidu....
This may be helpful ...a simpler explanation of why you don;t feel better even though TSh is 'in range' : healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish
I've been exactly where you are and the GP refused to increase to 50mcg. I had to change surgery but even so it wasn't easy to get an increase and I was left for months on 25mcg.
I really hope your GP will listen to reason and Increase your dose. It likely that your TSH will rise in the coming weeks and be out of range again. My TSH on 75mcg was the same as on 25mcg, which is why TSH dosing only is very silly.
If you don't get anywhere with your GP and you can afford it, I really recommend going privately to get better care. I wish I'd have done it last year when the NHS was messing me around so much.
yes Dahlias..... similar to me , when i started levo with TSH 7 ish , my TSH then stayed more or less the same (around 2.5 -2.9ish) for a whole year while i was on on 50mcg for 6 wks , then 100mcg for a few months , and then 150mcg for a few months.
My T4 level rose as expected on each dose , so yes it's totally inadequate to try and asses the dose by looking only at TSH.
(my TSH did eventually wake up and move.....about a year later , after i'd tried 175mcg for a few wks , it was <0.001 , and my T4 was very over range , so after that i lowered dose a tad and took 150mcg for many years).
I really feel for all you are going through. My TSH was lower than yours at beginning of treatment (though it had been much higher at 17 and I was being monitored to see how I felt before being treated! ) Stupidly I thought my tiredness etc was due to a demanding job and would improve when I retired which of course it did not and retiring from work made no difference. Initially I was given a 50 microgram per day dose. However even on that my T4 dropped even further and as symptoms were not improving dose was soon increased to 75. Two years later I am now on 100 micrograms and feel so much better. Also taking selenium along with vitamin D3 and K2 has, I believe, made a big difference. Please let your GP know stressing how you feel, we are people not numbers on a chart. It takes time to get better and you will find great support from this forum - I wish you well
Your latest results show you need increase to 50mcg daily
Free T4 (fT4) 13.9 pmol/L (11.9 - 21.6)
Ft4 only 20.6% through range
B12 and folate far too low (as direct result of being hypothyroid )
AFTER you get Medichecks test ……Start on B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
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
Post discussing how biotin can affect test results
I would pay attention to your folate levels. Mine was in range but on the low side and I felt awful. Bone tired, no motivation and brain fog. You are below range. I take 400mcg of methylfolate - this is the active form of folate. I have a genetic issue which makes it difficult for me to convert folic acid to methylfolate. I take it as a separate supplement rather than in a multi vitamin B supplement as I don't want to take niacin.
Got my medichecks test results, and today I have done battle with the online triage and got a telephone appointment (not with a GP, nothing to justify speaking to a doctor here…) but got to speak to a pharmacist who apparently is now part of the clinical team at the surgery.
Medichecks results:
TSH: 5.2 (range 0.27-4.2) (a reduction from when I began treatment, but clearly still too high)
Free T3: 4.2 (range 3.1-6.8)
Free T4: 15.3 (range 12-22)
Thyroglobulin antibodies: 509.00 (range 0-115)
Thyroid Perioxidase Antibodies: 256 (range 0-34)
Vitamin D: 37.1 (range 50-250)
Vitamin B12 - Active 64.2 (range greater than 37.5)
Folate serum: 1.4 nmol (range greater than 7)
Ferritin 43.4 (range 30-207)
CRP HS 3.940 (range under 3)
Opening position was to say that my last NHS results were “normal” so my 25mg Levo dose is fine.
I have thrown my weight around and said that my views as the person taking the medication and suffering the symptoms also have to be taken into account when reviewing the effectiveness of my medication, and that my symptoms have not subsided (fatigue, cold sensitivity, weight gain, dry skin, hair, hoarse voice, splitting/flaking nails, sleep disturbance, peripheral oedema etc).
Was then told they have to work to the guidance and my TSH is all they look at, and that’s all they could do.
I’ve really had to battle to say that being “just inside the reference range” isn’t the same thing as having a well managed condition or symptoms. I also argued the toss and said that that clearly my TSH is not settled and stable, because it varied significantly within a week between my NHS test and the Medichecks test, and on top of that my thyroid antibodies are clearly well outside normal range.
The pharmacist eventually went away to “review with colleagues”, and I have since been sent a text message to say that they have agreed to up my dosage to 50mg Levothyroxine.
I have bought myself some vitD, vit B12 and a B complex to take alongside the folic acid the GP prescribed.
Next test in 6-8 weeks.
Feel more exhausted after 25 minutes arguing for treatment than I do after a day in court, and I’m a lawyer for a living!
I didn’t get the coeliac test I was also playing for, or any discussion of why I had asked for that because my time was up. Will have to return to that one another day, or find a private test to take the stress out of arguing for it.
Thank you all for the moral support, the background reading suggestions and encouragement. Onwards!
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Any advice appreciated on blood test - hypothyroid symptoms.
Update test results after 2 month. I need help to understand if I’m going on the right direction! 
new test results and dose review advice.
Conflicting blood results from 2 different Labs?? Which could be most accurate. Blue Horizon or local Phlebotamist where I always go?
