I was diagnosed back in 2006 with Underactive thyroid. I was put on Thyroxine but it never really agreed with me so weaned myself off of it in 2013 after a complete diet and lifestyle overhaul.
I pretty much felt ok until September 2020 when I was completely exhausted and blood results showed my Thyroid was out of whack again so doc put me back on 50mg of thyroxine which has been increased to 75mg.
I still feel like complete ****
I am completely gluten-free since 2016.
I have dabbled with AIP, Paleo, etc for many years and AIP made me feel the best (I just can't stick with it!)
I had my latest blood results completed by Thriva and hoping someone can help shed some light as to how I can improve my energy etc.
I am on various supplements & HRT along with testosterone.
Thankyou x
Written by
Holeintheriver1
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Reading through your post my first thought was Hashimoto's (autoimmune thyroid disease) and your raised TPO antibodies confirm this. Levels fluctuate with Hashi's and that's probably why you felt OK off your thyroid hormone replacement for a while.
Take no notice of Thriva's opinion of "optimal", they're nonsense. Optimal is where you feel well. An FT4 of 12-17 (their optimal) is way way too low for most people and if a treated hypo patient had that result we'd say they were probably undermedicated.
Your FT4 is 58% through it's range so not dire but your TSH is higher than most healthy people have and higher than a hypo patient on treatment who generally feels best when it's 1 or below. You need an increase in your dose of Levo, 25mcg now and retest in 6-8 weeks. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference range if that is where you feel well.
You do have a problem with your iron panel and this will be causing symptoms.
Serum iron: 55 to 70% of the range, higher end for men - yours is 31.36% through range so it's low.
Saturation: optimal is 35 to 45%, higher end for men - yours is 19% which is very low.
Total Iron Binding Capacity (TIBC): Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is is at the very top of the range suggesting that you need to supplement with iron.
Ferritin: Low level virtually always indicates need for iron supplementation - yours is a mere 9.63% through range.
I would discuss your iron panel with your GP who may or may not accept these results. If not then suggest they do their own iron panel. It looks as though you could do with prescribed iron, it's best if GP prescribes then they should monitor your levels regularly. If GP wont you could consider buying iron tablets yourself but do an iron panel regularly (every 2-3 months) to check your levels.
Always do iron tests after a 12 hour fast (water allowed) so early morning is best so that you don't have to go too long in the daytime without food.
It's also worth having a full blood count done to see if you have anaemia. You can have iron deficiency with or without anaemia. You can have low ferritin with or without iron deficiency.
Symptoms of low ferritin include:
◾Weakness
◾Fatigue
◾Difficulty concentrating
◾Poor work productivity
◾Cold hands and feet
◾Poor short-term memory
◾Difficulty remembering names
◾Dizziness
◾Pounding in the ears
◾Shortness of breath
◾Brittle nails
◾Headaches
◾Restless legs
Symptoms of iron deficiency:
◾Persistent fatigue
◾Pale skin
◾Shortness of breath
◾Headaches
◾Dizziness
◾Heart palpitations
◾Dry skin
◾Brittle hair and hair loss
◾Swelling or soreness of the tongue or mouth
◾Restless legs
◾Brittle or ridged nails
Always advised here, when having thyroid tests:
* 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.
Do you take your HRT well away from your Levo? Should be at least 4 hours, might be best at opposite ends of the day.
What supplements do you take? Vit D is good. What about B12 and folate, were they tested?
Thank you for your reply and apologies for the delay in replying.
I am unable to access my patient access at the moment as my doctors have merged with another practice and I have to re-apply to get patient access again.
I will increase it to 100mg and re-test in 6-8 weeks.
I will make an appointment with Doc and ask for further blood tests. I always try and get one of the first appointments of the day and always on an empty stomach.
I take
Levo 100mg 5.30am
Oestrogel 2-3 pumps 6.30am
testosterone 6.30am
Patch MD iron plus patch - Iron (as iron Bisgylcinate) – 15.04mg / 83
Utrogestan 100mg 9pm
Magnesium glyciante 240mg 9pm
i take the below mid morning with food:-
B complex plus (pure encapsulations) 1 per day
Tegricel Colostrum 1 per day
vitamin d supreme (vit d3 + vit k1 + k2) 5000iu per day
selenium 200ug per day
Thyroxal (apex energetics) 2 capsules per day
zinc 30 30mg per day
vitamin c 1000mg per day
bare biology life and soul fish oil
I occasionally take a probiotic s boulardi, l glutamine, plant digestive enzymes
most of these were prescribed by a functional practitioner a few years ago.
to be honest I haven't really been taking them for about 4 weeks since trying to do my blood tests with Thriva as I didn't want them to interfere with the results.
I was also taking curcumin and quercetin but I will stop those as I believe these interfere with iron absorption.
i have just bought some iron tablets so i will start taking them. i am just looking into iron information so i am armed with info for when i go to the docs,
some of the above have added vitamins in them in very small amounts.
to be honest I don't feel any different whether I take the vitamins or not! but maybe because my iron is so low and I have very little energy!
As soon as i am able to get back into my patient access and can post other blood results.
In addition to what SeasideSusie has already said, it could be really worthwhile to going back to looking at dietary changes. A full autoimmune elimination diet is really hard. But taking out a few key triggers could make a big difference. Gluten, soy and dairy are the most likely culprits. You could try eliminating soy and dairy, then adding them back in one at a time. Perhaps eliminating just one would be enough. Or you could go back to a full allergen elimination diet, then slowly add things back in to get a good picture of what you can/can't eat, in case it's something more unusual. It's pretty rare that you react to everything.
Unfortunately, if you are sensitive to certain foods, you're probably not going to feel better as long as you continue to eat those foods, regardless of what medications you take. Food sensitivities could be why you need nutritional supplements, including iron. It could be worth going back on a full allergen elimination diet for a few months, then retesting everything, including antibodies, and seeing where you need to go from there.
i haven't eaten gluten for a very long time but there have been occasions where there my have be cross reaction when eating out.
I also dont eat soy.
I have been eating cheese for about the past year but have now reduced it to occasionally pecorino and a vegan cheese but this is not very often.
I could cut this altogether.
At the moment i have cut out all grains, nightshades, legumes
I just basically eat meat, fish & vegetables and i do feel so much better with the odd bit of dark chocolate 😊. I will play detective with the food and see what suits me and hopefully with the help of increased levo and iron supplements i can start to feel better and get better blood results.
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