Hi All, I (like a lot of you!) am just trying to find some answers or advice please. Around 4 years ago I went to my doctors pretty sure that my thyroid was playing up again as I had the same symptoms as previously such as tiredness, tremor, intolerance to heat and general aches and pains (I was first diagnosed with thyrotoxicosis in 2001 and was treated with carbimazole and levothyroxine for a couple of years. I was then diagnosed with a new episode of thyrotoxicosis in 2007 after having my first child and was treated for a short term again) however I was told that my tft had come back normal apart from having a high amount of thyroid antibodies but this meant nothing as they don't treat antibodies. I have since been tested for various things such as sleep apnea, anemia, lupus, cfs, fibromyalgia etc all showing nothing and all the while my symptoms have been getting worse and worse. Docs have finally agreed to refer me to endochrinology but are doubtfull that anything can be done as although I seem to have "thyroid disease of some sort" they don't do anything about it until it affects tsh levels. Does anyone else have any experience with symptomatic autoimmune thyroiditis but normal tsh?
My most recent blood tests are as follows
Test resultThyroid function test;Serum free triiodothyronine level Report, Normal, No Further Action (Patient Informed)
Your FT4 is low, but TSH is well within range. So as far as most medics are concerned they are not interested in testing further
Essential to test FT3 as well as FT4
But for full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
low vitamin levels are extremely common with Autoimmune Thyroid disease (Hashimoto's) diagnosed by high thyroid antibodies
Ask GP to run vitamin testing and coeliac blood test too
Low vitamins can affect Thyroid blood results
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Hashimoto's 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. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct 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
Thank you for such a detailed reply. My free t3 was 3.9pmol. I have been tested previously for coeliac and told that came back normal. My vitamin d levels were borderline in 2015 at 69.3 (>75) and I've taken a vit d supplement ever since.
Serum vit B12 level 364ng/l (187-883)
Serum folate level 4.7ng/no (3.1-20.5)
Serum ferritin level 21ng/no (10-204)
Haemoglobin concentration 11.8g/dl (11.5-16)
Mean cell haemoglobin level 27pg (27-32)
Doctors have said all of the above are normal although I can see some of them look to be on the low side.
I also take magnesium, selenium and zinc supplements (although they don't seem to make any difference)
Look at SeasideSusie detailed advice on ferritin. Eating liver or liver pate once a week should help improve, but you may need iron supplements
When supplementing vitamin D we need to retest twice yearly to check levels
B12 and folate are both low. You may benefit from daily good quality vitamin B complex, one with folate in
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Thank you, doctors just say all blood tests have come back normal but luckily I can view the actual results via the online system. I have reduced the amount of gluten in my diet but it looks like I need to get rid of it altogether 😕
Possibly but antibodies weren't tested for then because the routine tsh and t4 were enough to show abnormalities but this time because tsh and t4 were normal they then tested t3 and antibodies too
With Hashimotos you can swing from Hypo to Hyper - maybe you were mis-diagnosed back in 2001. Sadly GP knowledge is sadly lacking when it comes to thyroid and there have been a few cases on the forum lately when this has happened.
It's good you can see your results on-line and monitor your progress. How much VitD are you taking ?
If I remember right (memory really isn't a strong point of mine!) The first time round I was hyperthyroid but my doctor was confused as some of my symptoms were agreeing with that whereas others suggested hypothyroid. The 2nd time it was post partem thyroiditis and was hyper again. I was referred to the same endchrinologist each time and unfortunately he was horrible...extremely arrogant and didn't listen to a word I said. I currently take an 800 unit capsule (equiv 20mcg d3) per day.
Am just so fed up of feeling worse and worse as the months pass by and getting nowhere with the docs, I'm normally a pretty laidback and positive person but I don't recognise myself lately!
You are not moaning - you really should moan to your Docs though The more you discuss with us the more and more it sounds like Hashimotos ( Hypo ) and NOT Hyper.
Am assuming your GP prescribed your small amount of D3 which is intended for a well person ! I would suggest a larger amount until you reach at least 100. VitD is fat soluble so gel capsules containing olive oil should work well. Healthy Origins on amazon sell them - next day delivery ! Also add in Magnesium and VitK2-MK7 - they are important co-factors. Ah yes - you take Magnesium !
You need to correct your LOW Ferritin - which is stored iron in the liver. This needs to be around 70. Some of your FBC - Full Blood Count results point to anaemia too - so that must be addressed for you to feel well. A good B complex has been suggested - which should also make you feel better. B12 and Folate/B9 work together in the body so important to have good levels. B12 needs supplementing too - which can become a neurological condition when levels are under 500. Iron should be re-tested from time to time as too much is not good either.
Scroll down in the link above and the neurological symptoms are detailed first. Also look around the whole site to understand B12 and its importance a little more
Vitamin D dose may be too low. Aiming to improve to around 100nmol. Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs.
If not retested since started supplementing, you probably need to test. It may still be too low as 800iu is quite low dose with poor gut absorption issues. We see many on this dose still having low results after years of supplementing
Getting all vitamins optimal is first step. Perhaps retesting vitamin D now if not been done
Then retesting full thyroid and vitamins 8-10 weeks after improving ferritin by eating liver/possible iron supplements/ adding good Vitamin B complex, and if necessary increased vitamin D (plus magnesium if not already taking)
Only make one change at a time or add one supplement at a time, otherwise you can't assess improvement or not. Wait at least fortnight before another change
I was in the same situation a few years ago - GP was baffled as my (many) symptoms all pointed to hypothyroid but tests (TSH, T4,T3) all within range. She then sent me for antibodies test which came back very high. Her response was to start me on a low dose of levothyroxine - she explained that they used not to start dosing just for antibodies but that studies showed it is better to start as otherwise just waiting for it to get worse. Started me on 25mcg which increased to 50mcg as fatigue, tinnitus and pins and needles were still acute. Since then I’ve requested increases so been referred to two endocrinologists (first was horrible, super patronising, so she agreed to refer again (KCH - lovely)) and currently on 100mcg.
It really does help yes! Its nice to know I'm not the only one and that not everyone thinks its all in my head which is the impression I get from my Dr.
Thank you and I hope you're feeling better now you're being treated, just a shame it seems to take so long for everyone!
I'm in a same boat at the moment normal thyroid blood results but ultrasound showing thyroiditis I had positive antibodies for graves too when I had my youngest child in 2015 and become hyper but even my blood results came within range in two months they stopped the carbimazole since then I never felt myself again my new endo s checking all the antibodies again for hashi and graves with other tests so keep fighting with ur Go recently they have found a noudle on my thyroid too ..
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