Just wanted some advice on my latest bloodtest results. My TSH seems to be decreasing and T4 going up... is this what is to be desired and expected? Not sure of which way the figures should be going!!? Many thanks in advance!!
BACKGROUND
Jan 2020 positive TPO (SM) 150.8 ku/L (0.00-5.60ku/L). Diagnosed with hashimotos. Started on levo 50, increased March to 75.
Serum TSH
JAN 1.75mu/L (0.35-5.00mu/L) "Normal"
MARCH 1.51mu/L (0.35-5.00mu/L) "Normal"
APRIL 0.66mu/L (0.35-5.00mu/L) "Normal"
Serum free T4
JAN 9.7 pmol/L (9.00-22.0pmol/L) "Normal"
MARCH 11.1 pmol/L (range 9-22.00pmol/l) ”adequate thyroxine replacement”
APRIL 13.3 pmol/L (range 9-22.00pmol/l)
FERRITIN
AUG 2019 - 8 (range 10.00-200.00). Put on ferrous sulphate twice a day.
JAN - 50 (range 10.00-200.00) Normal. Continue ferr sulphate.
MAR - 32 (range 10/200) Normal - iron saturation level very high so was told to stop taking ferrous sulphate every day.
APRIL - 23 (range 10/200) Normal
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Flashgirl
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Thanks for your response. Unfortunately the hospital didn’t test my T3 even though it is on my blood request form which is really frustrating. I’m thinking of getting a private test so will look into this if you have any recommendations?
I know that my B12 and vitamin d levels were good in November last year, but again I think I need to get these tested again? It seems that the doctors aren’t very thorough! I am aware now that these are important so perhaps next time I will ask for them, or perhaps get them tested privately if you have any recommendations.
Interesting what you say about not feeling well at that level with T4. I have to say I feel far better than I did last year. Was very unwell as ferritin do low and obviously I had an underlying underactive thyroid. I started levothyroxine in January - now I’m starting to finally feel human. I realise I must’ve been ill for a really long time, which I’m quite sad about. hopefully I’ll feel even better in another three or four months - fingers crossed anyway. Many thanks again.
Clearly you need next 25mcg dose increase in levothyroxine but GP will only be looking at low TSH ....whereas low Ft4 is the relevant result
Vitamin levels need to be optimal for good conversion
Ferritin is still too low
Are you on strictly gluten free diet?
Hashimoto's frequently 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 intolerance. Second most common is lactose intolerance
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to 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
While still eating high gluten diet ask GP for coeliac blood test, or buy test online BEFORE trying strictly gluten free diet
Assuming test is negative you can immediately go on strictly gluten free diet
If coeliac test is positive you will need to remain on high gluten diet until endoscopy, with maximum 6 weeks wait, officially
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
Thanks for these links above. Great. Will look at them. For some reason my doctor requested T3 but it wasn’t done?! What is strange is that I saw the blood test request form and it was definitely on there. Is there any way that the hospital and decide not to test it? Very frustrating. Need to chase this up with her. Is it worth perhaps trying to get a private test? If so is there one that you recommend? I’ve heard about blue horizon...
Ref TSH is it normal to drop so low? Ref my Ferritin, this has been a problem for a long time. I was taking ferrous sulphate twice a day but in January my serum iron and Transferrin levels went crazy high so I was told to only take ferrous sulphate every other day, so that’s why it’s decreased.
Ref gluten free, In January I tested negative for coeliac, but I’ve been semi following a gluten-free diet with things such as pasta, bread etc... although not strict with things such as sauces etc. Will be mindful to try to do this 100%. I’ve definitely been feeling more sprightly since starting GF, but don’t know whether its the levothyroxine working?
I “see” my Endo in two weeks time, so hopefully he will put up my medication! Many thanks.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
The labs frequently decide that FT3 isn't necessary if TSH is within range. They are a law unto themselves and few doctors, let alone labs understand the relevance of FT3. I have a suppressed TSH because I am on NDT and they still don't test FT3 half the time.
But be aware that the FT3 test is not as reliable as TSH or FT4, which is part of the reason doctors don't like it.
Levothyroxine is very slow to act, but it does look as if treatment is working for you. The battle will be to get enough prescribed to keep you feeling well, rather than keep your TSH in range.
Thanks for replying Ruthi. You have put my mind at rest. Yes I agree that the levy looks like its working, which is positive. I have an end that I'm seeing in two weeks or so and he seems quite responsive so far! Hope you're well. thanks!!
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Some people (I am one of them) can do well with FT4 between the bottom and middle of range. But if I were in your position, I would increase your levo slightly to get that TSH closer to bottom of the AACE range (0.3-3.0).
Hashi's autoimmunity will cause you grief in the future if you don't get rid of it. Most docs are clueless about how to rid yourself of it, usually just prescribing levo to take stress off your thyroid, and ignoring nutritional factors. I would recommend you do a tTG (tissue transglutaminase) test to see if you are gluten intolerant. You could also be dairy intolerant. The cheap way to find out if questionable "foods" are your problem, is to go off each one in turn and then test your antibodies ~6 months later to see if they go down. It can take as long as 1.5 years to clear your system of the effects of food intolerances.
FT3 is the most important test you can do because it gauges how much active thyroid hormone you have (as opposed to FT4, which gauges your inactive thyroid hormone). Unfortunately our (defective) medical systems have a bias (probably based on cost containment) against T3 testing and prescription. If you can get an FT3 test, be sure your FT3 is at least in the middle of the range; and beware, some labs have more aggressive ranges than others.
If you want to delve into the issue of Hashi's in greater depth, there are many books and youtube videos by practitioners who specialize in dealing with autoimmunity, and Hashi's in particular. There are also a lot of thyroid advocates hanging around, e.g. Mary Shomon, hypothyroidmom, Janie of stopthethyroidmadness.
Thanks Eddie83. I had a test for celiac in Jan and was negative. I am trying to follow a GF diet mainly. Need to just tweak for fully. Cant believe how long it can take to clear the body of intolerant foods!!! Wow. Think I need to get FT3 tested, so will look into this. The one I saw online was finger prick, which I don't fancy as its hard to get blood from me in this manner. Need to further investigate places I could go, if anyone is doing it, in COVID times. Thanks for the recommendations - will take a look at them!
Don't know exactly what test you had, but it may be worthwhile to disclose that I was tested for the celiac genes (HLA-DQ2, HLA-DQ8) and although I don't have either of those, eating gluten still destroys my health.
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