Hi, I would greatly appreciate some input on my test results!
I have been hypothyroid for over 17 years, and have always adhered unquestioningly to the doctor’s guidance, assuming that they were doing all they could. Having found this site, however, I am starting to wonder if there is more that can be done.
I have steadily put on weight since my diagnosis, and have battled to get the weight off again with varying degrees of success. Last year, however, seemingly over night, I put on an extra stone and was told at my regular check up that I was over medicated and that my Levothyroxine should be reduced from 100mcg to 87.5mcg. I was surprised, as I was expecting to be told that I was under medicated, but, as usual, I capitulated. I have been feeling more and more ‘hypo’ and my symptoms came to a head about six weeks ago, when I could hardly get out of bed. I requested a blood test (adhering to the protocol advised here…empty stomach, early appointment, last Thyroxine 24 hrs previously etc.) and again was expecting that I would find myself under medicated, but the results have come back, and the doctor says I need to lower my medication more!
The thing is, I was so sure that I was under, that after the blood draw, I upped my thyroxine to 100mcg in hopes of functioning better over the Easter holidays…. and I do feel better, but I doubt if the doctor will increase my dosage rather than decrease it, especially since I took the law into my own hands!
My results are as follows:
TSH 0.14 (0.35-5.00)
Free T4 16.2 (9.0-21.0)
Total T3 1.4 (0.9-2.5)
Ferritin 119 (15-200)
B12 380 (200-883)
Folate 6.2 (3.1-20.0)
Any help understanding all this would be GREATLY appreciated….I feeling rather desperate to be honest!
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Bbmamma
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Hi there, are these the blood tests taken by your GP on 100mcg? These show you are definitely not overmedicated. If you feel ok on 100mcg, then I would stay on that. Your gp is panicing that your tsh is slightly below the normal range, however its not totally suppressed so all is fine. If I were you I'd go back to the gp, explain you feel ok on 100mcg and hypo (list your symptoms) on lower doses. Explain that as your tsh is not totally suppressed you want to stay on 100mcg. The gp might need to get the ok from an endo consultant before agreeing, but you need to stick to your guns.
These results were taken when on 87.5 mcg and feeling dreadful…I upped my dosage myself to 100mcg just for the past 10 days and started to feel a bit better, but I don’t think my doctor will let me stay on the higher dose given these results…I’m going to have to fight to even stay on 87.5mcg!
Ok, I see. Do you have the results from previously when you were on 100mcg? Both your ft4 and ft3 are pretty low in range, you've got plenty of room to increase from 87.5mcg. I presume your tsh on 100mcg scared your gp! As a rough guideline you can expect to be on about 1.6mcg x your body weight in kg.
To be honest, I’ve always just trusted the doctors and never asked for my results before…it’s only thanks to this forum that I’ve known to ask! My weight at the moment would suggest that I should be on about 110mcg given the 1.6 per kilo ratio. I don’t know if there’s another reason that I’m feeling so dreadful…my doc is trying to go down the h.r.t route, but I recognise these symptoms as hypo as they are exactly what I’ve experienced in the past….just wish the blood test was more conclusive!
You need to stay on that 100mcg by the sound of things. Have you got enough meds to stay on 100mcg, then request a new blood test in 6 weeks? It sounds like you might need to see a different gp or request a second opinion. Are you on biotin as this can interfere with the tsh blood test? The NICE guidelines are here, you might find them useful : nice.org.uk/guidance/ng145/...
I noticed there is no Vit D level results. For me higher vitamin D levels are crucial for keeping my hypo symptoms in check. Do you take a vit D supplement?
Another case of the doctor wearing blinkers and only seeing the TSH.Wanting to reduce further from 87.5mcg while you are symptomatic is shocking.I don't go near my surgery anymore with thyroid issues.Dont get me wrong I still use them for anything else but they almost wrecked me by lowering my Levo from 150 to 100 in one go and wouldn't increase it again as my TSH wasn't over 10.
Is there anything in these bloods to explain why I might be feeling so lousy?…I’m finding them impossible to read! I have appalling brain fog, muscle aches, excessive tiredness, hair loss and weight gain…all hypo symptoms, but could anything else be causing it that I’ve missed?
your T3 and T4 are too low and you need an increase in your dose not a reduction. T3 is the most important value and it being low would have been causing the symptoms. Also, you should get FT3 tested for more accurate diagnosis. The fact that you feel better on a higher dose only confirms it. How you will manage with the doctor, I personally have no idea...
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
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
if your hypothyroidism is autoimmune
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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
No…would they do that on the n.h.s? I was told that I had post- partum hypothyroidism, but I had all the symptoms of hypothyroidism before pregnancy…so much so that I got myself tested at the g.ps. I was told that I was ‘normal’ back then (18 years ago) but now I wonder if my hypothyroidism was sub clinical at the time. Both my Dad and my Mum’s sister have hypothyroidism, so it’s definitely in my genes!
Autoimmune disease frequently dramatically changes immediately after giving birth
Very common to get diagnosed within year or two after pregnancy
Post partum…..means it started after pregnancy…..if it resolves within 9-18 months it’s genuine post partum. If it continues it’s autoimmune hypothyroidism
Your TPO antibodies may have been high in the past.
If antibodies drop back into range, it doesn’t mean autoimmune disease has gone away
Common after years being hypothyroid on replacement thyroid hormones for antibodies to reduce
Antibodies are not the disease, they are the “hoovers” clearing up after thyroid is attacked. After many years being hypothyroid there’s often little or no thyroid left to attack
Mmmm … there’s a suspicious disconnect between your TSH level & FT4 & Total T3 levels. ( Btw, how come TT3 & not FT3 if you are in the UK??)
Your pituitary gland thinks your thyroid hormone levels are excessive which they clearly are not & you were only on T4 meds at a relatively modest dose when tested.
Suspect your GP is welded to the “TSH is all” school & you may have a hard time persuading him to arrange to have your pituitary function tested. You’ll have to be very very firm indeed and point out your actual thyroid hormone levels are relatively modest & your TSH level is seriously out of whack with their levels & this needs investigating. Stress & itemise hour symptoms and give him the very firm opinion that reducing your dose will will lead to even more discomfort & unwellness. And that your dose needs to be increased.
After 20+ years my GP reduced me from 100 to 75 to 50, all based on low TSH. I had also felt very under medicated before they started. The symptoms overlap so you may have B12 deficiency symptoms, rather than or as well as thyroid symptoms.
Take a look at the PAS section on this platform for B12 info and unfortunately lots of people who are hypothyroid & B12 deficient.
It might be easier to fight your corner for maintaining T4 if you can be sure you've dealt with everything else.
A lot of my symptoms are coming under control with B12 injections, but I am still fat.
I wondered if maybe you are inadvertantly taking biotin (B7) in a supplement, like a multivitamin? If so, you need to stop anything with biotin 7 days prior to labs. It doesn't affect your thyroid but it does affect test results due to the way the test is run. It will cause lower TSH) numbers and inflated FT3 and FT4 numbers. It does look like you may not be converting T4 to T3 efficiently. Usually, it would mean your FT3 would have higher numbers with the amount of FT4. Vit D deficiency might be part of that, but they have also found that many that are on monotherapy (levo or T4 only) tend to have lower T3, which would explain continued symptoms. Also, if you are on generic levo, you may be responding to fillers/binders used by your current brand. Because levo is generic, the pharmacist will fill your script with whatever brand they have on hand. And sometimes they carry a different brand for different doses. Check your bottle to see if the brand is on the label or call the pharmacist to see if they can tell you the brand and fillers. It can, sometimes, affect absorption .
Thanks, I don’t take any supplements, but I did change pharmacies about 2 years ago, and the brand did change from Accord to Teva…I was wondering if this could have had an affect, but if I wasn’t absorbing it, wouldn’t that show up as under medication not over medication?
Hi BbmammaSorry to hear about your struggle to stay on higher dose.
Just seen that you swapped to Teva from Accord. This happened to me quite a few years ago and I noticed I felt unwell after only a couple of weeks. I returned to the chemist and the pharmacist told me many people struggle on Teva. Kindly he changed my prescription to my usual brand Accord. The chemist I use now has Accord written on his system and I always check before leaving the chemist. Sometimes they have trouble sourcing Accord, so recently I have asked my Endo to get the brand name written on my actual prescription.
Maybe worth trying to request to change to a different brand? Good luck, it's rotten feeling under medicated.
I thought of that after I wrote that! 😁 I'm still wondering if you aren't converting. You may be one who needs T3 supplements, also. The fact that your TSH is so low when your FT3 isn't that high has me leaning toward that. Have you considered NDT? I truly hope you find someone that will listen to your symptoms, not just test results. Until scientist created synthetic T4, Drs treated according to symptoms only. Armour thyroid and other natural thyroid hormone replacement was around for over 50 years before levothyroxine was made. Of course, there were those that were OVER dosed, but it worked for many years. Cytomel is the synthetic T3 formulation that you might try. See if they will lower your levothyroxine and supplement Cytomel. T4 does nothing much, except as a storage hormone. T3 is what your body needs to function. Good luck to you... I can imagine how frustrated you must be! ❤️
I had the same issue a few years back. My TSH is suppressed (far lower than yours) and I was on 100mcg thyroxine (with T3 and T4 about 2/3rd through the range). GP advised me to reduce to 75mg because of the TSH. Long story short, same problems, weight gain, anxiety, depression, constipation, hair loss.... and I felt absolutely rotten! Interestingly, the TSH never increased! I went back to 100 mcg again and started to feel better after a while (took about 6 months to get everything right again!).
Your T4 and T3 levels suggest that you have plenty of room to increase (especially your T3), so I would increase your daily intake. I would also look into quality supplementations, Magnesium, Vit D3 with K2-MK7, Vitamin B complex, Zinc. Since I have insisted on my 100mcg and regularly taking the vitamins, I feel so much better. You know best how you feel, not a TSH value! Try to be strong and stand up to your GP - your health depends on it! Good luck! 😉
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