I take 150mcg levo daily but have been off work for 4 weeks, dizzy, nauseous, severe anxiety, pins and needles, numbness. Just had an advanced blood test done and am going back to my go. Results:
TSH 1.23
FT4 37.7
FT3 4.67
TPO 157
T4 181
TGAB 178
That looks like I need to reduce my dose, but the TSH is already near the low end if normal...... bit confused what I need to ask the gp...... any advice??
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We always need reference ranges from the lab that did your tests, these vary from lab to lab so we need those that come with your test.
However, it is obvious that your FT4 is over any range that we've ever seen on the forum.
Also, from ranges we normally see, your thyroid antibodies are both over range too, this confirms autoimmune thyroid disease, aka Hashimoto's. Did you know you have this?
Your raised antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where the thyroid is attacked and gradually destroyed. Fluctuations in symptoms and test results is common with Hashi's.
When the thyroid is attacked, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds can be adjusted slightly at these times if necessary, but will need readjusting when hypo symptoms return.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. Low B12 may be causing your dizziness, pins and needles, etc. It's essential to test
Vit D
B12
Folate
Ferritin
and address any low levels or deficiencies.
If GP wont test then we have private labs that will.
Added in the ranges. I have never heard hashimoto mentioned- I have been under active for 22 years - could it come on slowly?
Also just hitting menopause, which is prob not helping with crying!
I can't possibly go to work- I feel so bad....if it is a 'hashi swing' could it take ages to go back. I'm reluctant to mess with my dose. Should I ask to be referred to an end, or does it look like I need to reduce my Levo? Btw... I am going to a private hormone clinic on friday to discuss meno and thyroid...
Update for interest....... gp was not overly supportive of my going down private clinic route! He said he could not offer any advice on changing Levo dose when i showed him the lab results, as they were not nhs tests. We had the 'you say I'm normal- I know I'm not' debate, and he said he would send me for an antibodies blood test. He pointed out this was not a regular test etc... one off....
In meantime went to private hormone clinic who also did their own set of lab tests, and advice was to reduce levo from 150 to 125 for starters, take high dose vit d for 2 weeks, then keep it highish after that (also take K2 with that). She mentioned a supplement called t-convert which can help t4 to t3 conversion. As an aside I am perimenopausal, and progesterone non existent, so am now taking progesterone too! I will see how it all goes for a fortnight , but feeling positive, and yesterday had a couple of anxiety free hours!! Can it all change that quick or maybe positive placebo??
He said he could not offer any advice on changing Levo dose when i showed him the lab results, as they were not nhs tests.
Not even to say how over range your FT4 was?! He could have done his own tests is he wasn't happy with your private ones.
take high dose vit d for 2 weeks then keep it highish after that (also take K2 with that).
What is your Vit D test result? You have to know this before supplementing, Vit D is fat soluble so is stored in the body, too much will cause toxicity, it is essential to test then take the correct amount, and monitor it twice a year to make sure you keep to the level recommended (100-150nmol/L according to the Vit D Council/Vit D Society). Magnesium is also needed as it helps the body convert Vit D into it's active form.
She mentioned a supplement called t-convert which can help t4 to t3 conversion
That contains 75mg magnesium and 75mcg selenium, also contains some zinc and copper. Selenium and zinc are two minerals said to help conversion, selenium often recommended here but the usual amount is 200mcg. Magnesium, as mentioned, is needed when taking D3 but the usual amount in a magnesium supplement is around 350-450mg. So taking 2 capsules of that you're a bit low on the recommended amounts.
Thanks for this - my vit d was 73 (50 - 200) and I will get this checked twice a year as you recommend. I have recently started taking 250mcg magnesium, so if there is 75 in the t convert that will put me up to 325, so should be ok. Thanks again for your brilliant knowledge x
Retest in 3 months, and when you've reached the recommended level (100-150nmol/L) then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
From your symptoms and FT4 it does sound like you could be overmedicated, but to have a clearer idea we'd need to see the ranges for your blood test results. Would you be able to add these? It sounds like you're having a really difficult time at the moment, I do hope you find some answers very soon.
I second the excellent response you've had from SeasideSusie, that in the absence of the respective reference ranges, so an educated guess only, rather than being over-medicated per se, you could very well be experiencing an autoimmune flare which is causing cells to offload their thyroid hormone into the bloodstream. However, I wanted to clarify an apparent misconception. You wrote "That looks like I need to reduce my dose, but the TSH is already near the low end of normal", so it seems that you've got it the wrong way around. Lowering your Levothyroxine doesn't have the effect of lowering your TSH, it has the opposite effect. When, through the feedback mechanisms of the thyroid:pituitary:hypothalamus axis, the pituitary gland senses that you have too little endogenous thyroid hormone, it increases output of the Thyroid Stimulating Hormone ie the TSH level rises, in order to prompt the thyroid to produce more thyroid hormone (or you to take more Levo). So reducing your Levo will reduce your blood hormone levels and thus prompt an increase in TSH.
Aha yes my bad.... I thought the TSH might go down more, but what you say makes sense. I'm new to the forum, but maybe you can see the ranges I added in my reply to seasidesusie ? I think I will ask my gp for some 25mcg tabs, and then if I want to decrease I can do it by 25 rather than 50. I suspect he won't be able to help with hashi info. Will need to do more reading! You guys are great! Will read up on gluten too. Thanks
No problem, but it's important to have that issue the right way around in your mind. 😊 Yes thank you, I can see the extra info. Do you have the actual result for ferritin, as it being just anywhere in range ie 'normal', can very directly have an impact both on how you feel more generally, and on thyroid functioning.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
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, sometimes 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
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
GP won't recognise Hashimoto's, in Uk it's just called autoimmune thyroid disease and medics tend to completely ignore antibodies as they have no specific treatment to offer
Yes I take 25mg of Vit D3 daily. Not much point discussing hashi with gp later then I guess. I will may be reduce the Levo dose and see if I feel better, then keep getting regular bloods done til everything gets into normal ranges. Thanks x
You have had excellent replies and links on here, as is usual from kind members😊, but I just wanted to further emphasise about the importance of addressing the low folate level.
My low folate was ignored for years by GP and other 'specialists', and it eventually caused me serious problems. Although my B12 was always 'just' in range, I developed a serious B12 deficiency, as folate (and Vit D) needs to be optimal also. I only got to the bottom of my problems (after years of suffering) from taking advice from this forum.
The onset of the menopause is a common cause of endocrine/hypo chaos, especially with Hashis, so it's good you have the time at the moment to learn all you can from here.
It can get quite complicated, and I have ended up on a completely different thyroid/vitamin regimen, but am getting there at last! I wish you the best of luck in your 'education', and I hope you will soon feel well 🍀 x
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