Ive been hypothyroid (autoimmune) for about 1.5 years now. Im currently on 112.5-125mg of thyroxine and have been creeping up from an initial dose of 75mg. I take this before bed.
My latest results show my TSH is getting worse not better. About 3 months ago (when I was on 100mg of levo) it was just <5, now its 5.98. Im taking more Thyroxine but it doesnt seem to be getting better its getting rose in terms of TSH.
On top of this Im not feeling better either but Im not sure this is thyroid related. Ive posted about this here healthunlocked.com/thyroidu... but basically I fluctuate between feeling good for 30% of the time then bad for the rest, ranging from a bit under par to really bad where I can hardly function for a few days (bad bouts of brain fog that last a few days seemingly starting in my gut).
My antibody rates are also climbing, despite me being on a more or less paleo/gluten free diet for the past year.
I did see a functional doctor a year ago and tried various supplements along with the diet but again it didnt seem to have much effect. She seemed to think I wasnt converting T3 correctly which if Im not wrong these results suggest?
Im just a bit confused as to where to go next. It will be GP but based on what they are like Id like to go them with what I ideally want rather than them simply suggesting I try more t4, and my options seem to be:
1. Take more thyroxine
2. Try NDT... reluctant to go down this route due to difficulty in getting this consistently
3. Try taking some T3 as well. Id like todo this with my GP but unlikely so Im prepared todo this by myself.
Full results from Thriva are:
Triiodothyronine (FT3)
3.9 pmol/L
Optimal range 3.1 - 5
Thyroid-stimulating hormone (TSH)
5.98 mIU/L
Optimal range 1 - 2.5
Thyroxine (T4)
113 nmol/L
Normal range: 66 - 181
Free thyroxine (FT4)
19.1 pmol/L
Normal range: 17 - 22
Thyroglobulin antibodies (TgAB)
403.9 kU/L
Folate
43.8 nmol/L
Normal range: 30 - 60.8
I realise b12, VitD etc are all important but my last results on these were optimal and i supplement these regularly enough for me to think this isnt a major issue.
Any guidance much appreciated.
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Johndillon
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Your high TSH suggests you need dose increase in levothyroxine
Was Thriva test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
If yes
Currently poor conversion of Ft4 to Ft3
High thyroid antibodies confirms autoimmune thyroid disease
As already on gluten free diet it’s likely you will need T3 prescribed
First step is to get increase in levothyroxine
See if it helps
How much do you weigh
If can’t tolerate next dose increase or it doesn’t improve low Ft3 .......then you will need addition of T3 prescribed alongside levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
OK thanks Im about 82KG so thats about what Im on maybe a bit under.
No gluten free has made no difference whatsoever, in fact my antibodies have gone up during this period.
Im pretty stumped as to what to try next really Ive done a pretty much exclusion diet so I can only conclude its not diet. Amalgum fillings is one suspicion (I had ME many years ago that started soon after I had a lot of filings fitted) but this is tricky to test and can cause more issues than it solves.
Anyway thanks for your help your work on here is brilliant.
What does "not tolerating" look like please? When I first went up from 50mg to 100mg I became incredibly bloated and I put it down to this could that be correct?
I can’t tolerate full dose levothyroxine, as my conversion is poor. Also severe gluten intolerance despite zero gut symptoms.
For me, if levothyroxine is higher that I can tolerate, I get mix of hypothyroid symptoms and hyperthyroid symptoms (due to high Ft4)
Some people find they can tolerate better if split dose levothyroxine am and pm. I tried that, slight improvement, but not able to get higher than 125mcg.
Hi have you looked into DHEA did your functional doctor look into this aspect of your health ? As I am sure you know autoimmune disorders affect women more than man , it is testosterone that protects men from autoimmune disorders when testosterone drops men are also prone to autoimmune disorders, so looking at your DHEA levels - DHEA is related to your testosterone would be a good idea with a view to supplimenting if you are deficient which you most probably are
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