FT4 19.5 pmol/L range 12-22 pmol/L Vitamin D 51 n mol/L
FT3 3.7 pmol/L range 3.1 -6.8 pmol/L
TSH 2.85 range 0.27 - 4.2 mU/L Antibodies 157 IU/ml
I have never felt so ill . I had stents fitted in March 2023 and have put on two stone. The cardiologist dropped my Levothryroxine to 100 mg in December 2022 and have been on this since .Doctor says my thyroid level is perfect! Mercury Pharma. Coeliac test negative. Vitamin d better spray 3000 but cannot raise my levels. The doctor says I probably have statin induced myopathy and nerve damage as I cannot get rid of chest discomfort.the last few weeks I have had palpitations and I am generally feeling at my lowest I have felt. 18 months is a long time to feel so crap. Do you think I should ask for an increase as I am at a loss and can’t go on like this. Thank you for reading.
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Fourwhitesheps
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was test done early morning and last dose Levo 24 hours before test
Are you taking levothyroxine well away from other medications
always same brand levothyroxine at each prescription
You need B12, folate and ferritin levels tested
What other vitamin supplements are you taking apart from vitamin D
Are you also taking magnesium supplements, afternoon or evening, at least 4 hours away from levothyroxine
Which vitamin D mouth spray…..is it the red one that includes K2? One spray = 1000iu
Or green one - one spray = 3000iu
Many members find they need higher dose vitamin D, especially if trying to increase levels
Thyroid
TSH is too high and Ft3 much too low
Roughly where in U.K. are you
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will increase levothyroxine/prescribe T3 if appropriate
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
test done 9 am. 24 hours after last levothyroxine. Levo taken at 5 am well before all my other medication. Green vitamin spray as told not to take k2. Vitamin b complex. Same brand of Levo.
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 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
Work on improving low vitamin levels and retest in 8 weeks
See how much you can improve Ft3
Once vitamin levels are all optimum, if Ft3 remains low (below 5 ) then consider seeing endocrinologist for addition of T3 prescribed alongside levothyroxine
Though they may be reluctant with your medical history
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential 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 may slowly lower TPO antibodies
As coeliac test is negative you can immediately consider going on strictly gluten free diet
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Meanwhile…..Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Your T4 is pretty high. As soon as you take your dose after the blood draw it’ll go higher. It could be over range in reality. Your T3 is very low I feel you could do with T3 medication liothyronine to lift your T3 level. Your TSH is too high. It shouldn’t be above 2.5 or you’ll feel hypothyroidism symptoms.
If you’re not getting anywhere which it sounds like you are then try private if you can. It’s not as expensive as you’d think. I have a brilliant private endocrinologist. Please private message me if you’d like his details.
I do hope you can get this sorted as you say 18 months is ridiculous. And the Drs are very wrong … your thyroid levels are not perfect.
Optimising your vitamins may help you also to improve the conversion from levo T4 to the most important hormone T3.
Your cardiologist hould have told your doctor that patients with low FT3 are more at risk of having heart attacks so you probably would be much better off with T3 than levo especially that your conversion is poor.
They should have also investigated the reason why your B12 is low though unfortunately when it's still above the ridiculously low range treshold they would say it's fine. However, if the reason for your malabsorption is other than diatery (vegan or vegetarian) you would need injections not oral supplements which just push the serum levels up but leave you deficient on the cellular level.
Thanks there is no communication between my cardiologist and my doctor. Cardiologist lowered my Levo in 2022. No checks on the medication I am on for my heart. Doctor says all my blood results are ideal. My doctor says all my symptoms are from nerve damage and cardiologist says chest pain is not connected to my heart. I have had some good advice so will try to increase my vitamin levels and try gluten diet.
If my thyroid levels are low I always get chest pain but I was told by doctors and a cardiologist that this had nothing to do with my thyroid. I don’t trust doctors and self medicate with NDT and stay well now. I feel for you being poorly for so long and I think you need to try raising your dose of levo . I hope you get well soon x
OMG the downright ignorance of these medics dealing with your issues. I am unsure of the pain after stents but I do know people who have had them and get no problems. Even people having had bypass operations who report no pain, after the initial intrusion of the operation subsides.
However, I had an MI twenty plus years ago. Was put on the full medication package (until I withdrew from them all about four years later) because I remained in pain and I still remain in pain, especially when trying to get out and about over any distance outside.
It’s very odd that I have survived all these years without ‘their’ medication, in pain yes, but without any questions from my so called medical helpers. Just left to it. It’s now deep in my records and no-one has bothered about it. I recently have brought this to the attention of cardiology for a thorough review.
This is due (I am convinced) to my hypothyroidism, only diagnosed three years ago but ……...
Medics are just terrible at ‘not knowing’ and leaving you high and dry!
P.S. my current cardiologist was content to tell me that “…. Endocrinology education was many years ago “ leaving me with the impression that it was unimportant re: heart (shocking) and to be left to the endocrinologists, who up until now, did not want to know! I am very surprised your cardiologist undertook to lower your medication! What the heck?
It’s my experience too that endocrinologists don’t want to touch patients who have heart problems. My problems were reignited by T3.
Why is all this stuff just being turned over to the patient? Some serious research (old and new) needs to be applied to treatment/dosage etc.
The get out clauses all apply to the medics. Patients?
Thank you just told it’s not your heart that’s sorted now. Doctor not doing anything apart from paracetamol that doesn’t even touch it. I just want it all to go away.
I see you are in the UK. Whereabout? DM me if you don’t want it out fully on the Forum. I have found an endo (locally to me Tyne and Wear) who researches heart and thyroid issues, I can’t recommend him as I have only just finally got an appointment with him. However if I find he is useful I can let you know. Unfortunately/fortunately for me being local I can get an NHS appointment but he does not work privately. Philosophically I agree with this stance but it’s obviously more difficult (but not entirely impossible) to get an appointment with him living outside the area.
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