l have just had my blood results back (April's tests showed raised liver function, and some other out of range *bits n bobs so GP wanted a retest. This time things mostly normal except for TSH being 0.11 (normal range .03 to .394) and T4 being 24.25. (Normal range 12.3 to 20.2)
yes,bloods taken early morning, and last Levo 24hrs before.
T3 not tested, and l can't afford a private test at the mo'.
*My ferritin and B12 are still slightly high: B12 is 780 and ferritin 512, but they were a lot higher in April. GP said they were both too high because of the liver issue (brought on by very low calorie diet.)
The GP is wanting to see me, presumably over the thyroid tests and it worries me that he will want to lower my thyroxine. I am still, after 3 years, always constipated, losing hair, have high cholesterol and wanting to sleep by 10.30 am. l am in bed by 8.pm each night as it is, so the thought of him lowering the daily dosage is rather scary.
looking at the graph on my patient App,it would appear that my T4 has been steadily rising for a couple of years,so it hasn't suddenly jumped up; the liver issue seems an unlikely cause then.
My question is, what are the possible causes for this other than being overmedicated?
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if all other factors are consistent ,eg all tests approx 24hrs after last dose etc , then a steady trend of rising fT4 and lowering TSH , does indicate that the Levo dose is a little bit too high.
However .... 'a little bit' does means a little bit.... a very small dose reduction might be worth considering .
eg if you take 125mcg / day then reducing to 100mcg /day is probably too big a reduction. but 112.5mcg /day may be ok ..(100mcg / 125mcg alternate days)
... or even smaller than that eg 125/ 5 days ... 100 /2 days .
I ended up very over range for fT4 on 125mcg (having previously been in range on that dose for a long time)
.. so i agreed to reduce to 112.5mcg ...... the first 5 weeks did feel undermedicated , pretty unpleasant . slow brained / became a bit constipated etc , but after 5 weeks things had improved, constipation gone , and i was starting to feel ok again .
Unfortunately when tested @3 months my fT4 had gone even higher than before (illogically, can't explain why , it just did) , so the GP wanted to reduce further to 100mcg .. eventually i agreed and tried it , but this time i felt really undermedicated , zombie like ....and this time it didn't improve after 5 weeks , it got worse with chronic constipation, and my whole digestive system felt like it had just gone to sleep So after a bit of arguing i got GP to reluctantly agree to putting dose back up despite my fT4 still being over range .. i went with 112.5mcg again .. which to be fair did eventually prove to be an improvement over the 125mcg dose ... i slept much better for one thing.
at the next test 6 months later.. my fT4 was back in range, (even though the dose was higher again)
So my 'twopenneth' ..... if you do accept a reduction, make it as small as possible ~ don't agree to a 25mcg reduction, negotiate a smaller one ..and then give it a good couple of months to settle in before making your mind up how it feels
Many thanks for the reply; l will most certainly be taking your suggestion by negotiating how much it is lowered. Although any decrease for me is going to be a step backwards l think.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
High ferritin can be due to inflammation of Hashimoto’s…..ideally iron should be tested too. It’s possible to have high ferritin and low iron levels
Poor gut function with Hashimoto’s 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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
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.
Thank you Slowdragon. Seemingly a lot for GP to be getting on with. I will do the coeliac test mysrlf when l get paid at end of the month, but when l looked at the symptoms earlier, only the fatigue resonates. In fact, l am not actually sure it is fatigue l have as it is more like extreme sleepiness/drowsiness. It certainly wouldn't be safe for me to drive a car. My mum has ANCA related vasculitis and she and l compared tiredness/fatigue symptoms rwcently. She reckoned this drowsiness l get is very different to how she experiences fatigue. I am pretty sure he didn't test my iron either.🤔 Anyway, thank you for the very comprehensive reply. 🙂
I would refuse to lower my dose without seeing a result for FT3. You're only over-medicated if the FT3 is well over-range. T3 is the active hormone needed by every single cell in your body, and it's low T3 that causes symptoms. So, if you're still having hypo symptoms, my guess would be that you're a poor converter - most Hashi's people are - and your FT3 is too low.
I am curious about the T3 situation; does T3 stay fairly stable in the context of poor conversion? In other words, if a doctor did a test for tsh, t3 and t4, and noticed the t3 was below range and tsh higher than it should be, s/he could say 'you are a poor converter' presumably. Is that likely to change/correct itself over months/years on its own, or is it more likely that if you start off a poor converter on Levo', you are likely to remain so?
The reason I ask is that when I read your reply, I scrolled through all previous thyroid test results on my app. Here is what I found from 2018 (whilst on 125 mg of Levo - same as now):
Tsh: 5.16 (0.3 - 3.94)
T4 13.4 (12.3 - 20.2)
T3 3.0 (3.70 - 6.70)
Do you think there is an argument for him testing my T3 before reducing my Levo e.g, 'well it was low then, so it could well be low now' sort of thing?
No, detecting poor conversion has little to do with the TSH. You have to compare the FT4 and the FT3:
T4 13.4 (12.3 - 20.2)
T3 3.0 (3.70 - 6.70)
Those result just show that you were grossly under-medicated! Your TSH was much too high - should be 1 or under - and the Frees much, much too low your FT3 there is - 23.33%! You can only tell for sure if you are a poor converter when you are adequately doses on T4 - i.e. TSH down to at least 1.
But, imagine you had results like this:
FT4 18.5 (12.3-20.2) 79.27%
FT3 4.5 (3.7-6.7) 26.67%
That would show poor conversion because of the huge gap in the percentages through the range. Good conversion would be a difference of just around 5%. So, FT4 79%, FT3 70-75%. Hope that's not too confusing. lol
You're now take probably more T4 than you should, but you cannot tell if you should reduce is without seeing the level of your FT3.
There are many, many reasons for poor conversion. If you're lucky enough to find the reason, then you can improve your conversion, but it's not that easy to find. It may be due to low nutrients, so obviously the first step is to test them, and supplement where necessary. But, that won't always fix the problem. Or is could be that you're not eating enough calories - you need calories to convert. Or, as I said before, just the fact of having Hashi's could cause it, and there's nothing you can do about that. So, very often, yes: once a poor converter, always a poor converter. The trouble is convincing your doctor because they just don't have the knowledge to understand all that.
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