I have suffered with hypo symptoms for Hashimotos for many many years and had to fight to get the GP to even think of helping me. At one point my TSH levels were over 9 and they said my levels were fine and it was in my head and maybe I’m just “stressed”.
Anyway I changed GP surgery and the new GP was much more helpful. I am currently on 75mcg Levo (Teva) which I still had to beg for - they had me on 50 and I felt terrible still with my TSH still over 3 and they were so reluctant to give me 75mcg.
The GP does not ask me to come in for tests ever, they will only test me once a year if I ask for it. The results pasted above are from a private blood test in December. The private GP said this was normal even though I am being treated for hypothyroidism and that there was no point in contacting my GP as they wouldn’t do anything.
Fast forward to May and I now have aches all over and am cold and tired and have numb hands at night and peeling fingernails. I am awaiting GP blood test results which I should receive tomorrow. They are only testing TSH and T4 and did not want to test anything further. I am dreading the struggle to get my dosage raised. I guess my question is, if my results are the same or higher than the results from December or above, would it be perfectly valid to ask for a higher dose and for a re-test after 6 weeks? Can they say no? Should I ask for other tests as well?
Thanks so much in advance, feeling terrible and a bit lost in this struggle to get help!
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The first question we need to ask is do you always do your thyroid tests as we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
This gives the most accurate picture of our thyroid status and allows us to compare our results each time.
The results in your image show a good level of FT4 (unless you took your Levo before the test) but your TSH is higher than one would expect to see with that level of FT4, hence the questions above about how you did your test.
Also, just testing TSH and FT4 is not giving a full picture, we also need FT3 tested at the same time. This allows us to see whether we are converting T4 (which is a storage hormone) into the active hormone T3. Low T3 gives us symptoms. Many of us can't get FT3 tested with our GP so we do private tests with one of ThyroidUK's recommended labs - cheapest for basic test is Monitor My Health (an NHS lab at Exeter hospital which offers tests to the general public), also popular are Medichecks and Blue Horizon. Details and discount codes here:
Good conversion of T4 to T3 needs optimal nutrient levels and we advise checking key vitamins as follows:
Vit |D
B12
Folate
Ferritin
Have you had those tested? If not it would be worth doing them, thyroid/vitamin test bundles are offered by the above mentioned labs.
Pop back with your new results from GP when you have them but I would certainly advise doing the full thyroid/vitamin testing as suggested above, once we see those results we can suggest a way forward.
in all these references , GP's are recommended to keep TSH between 0.04/0.5 and 2.0 / 2.5 in patients on levo .. some of the references were taken from GP 'update' sources , one was written specifically for GP's by Specialist Registrar's in Cardiology/ Endocrinology .. so there should be no argument about their validity ... you can use them to argue that TSH as low as 0.4/0.5 is considered safe /acceptable if that is what the patient needs to feel well , as long as their fT4 is kept in range.
Since the GP does not know how much a 25mcg increase will lower you TSH or how much it will raise fT4 , it is perfectly reasonable to ask to try it for 6 months to what happen to symptoms and TSH/fT4 results .
However your fT4 result is relatively high .... see the first few replies on that post .. (re. testing at 9 am / 24hrs after last dose /without breakfast).... they explain why fT4 tests should be done 24hrs after taking the tablet .
if you tested within about 6 hrs of taking last dose , you are measuring the short lived 'peak', which you don't want.. you want to measure the average circulating level.
How long after last dose did you take this blood test ?
Thanks so much for your replies SeasideSusie and tattybogle , much appreciated! The results I posted last weekend were from early December and were taken later afternoon.
I got my results from last Friday today and they are attached. These were taken around 8.30am, before I took my Levothyroxine but about an hour after I had a cup of coffee (I didn’t realise this would potentially affect the results).
I am so achy and numb hands from carpal tunnel are waking me up nearly every night now so feel like I need an increase to my current 75mcg of Levothyroxine, the TSH looks high but I think the T4 looks ok. Is there an explanation for this? Do you think I should be asking for an increased dose? Thanks in advance, your help is very much appreciated! 😊
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