Have just had a frustrating conversation with a G.P at my surgery who has refused my request to increase my Leveroxine another 25mg due to my latest blood test which is TSH 0.09 miu/L (0.35-4.94)
Serum Free T4 13.3 pmol (9-19)
I had private tests done via medi checks last August which showed I was undermedicated. On your advice I started taking Magnesium and vit D&k2.
I wrote a letter to the doctors as I couldn't get an appointment and last October they agreed to increase my medication from 50mg to 75mg.
I now feel they are trying to take it off me. I stuck my ground and it was left that I would have another TSH test in a months time and then another telephone conversation with the doctor.
I felt like I was fobbed off and am feeling very upset about what is going to happen in the future. Where do I go from here?
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Lolalottie
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They are not really 'allowed' to increase the levo prescription when TSH is so far below range ... so you will have a bit of a fight on your hands to keep the dose at 75mcg , let alone increase it at the moment .
The fact that your fT4 is comfortably in range on 75mcg will help your argument .
when it gets to next month ....if your TSH result has risen to a bit closer to the bottom of the range ~ then point out the fT4 is well within range (assuming it still is) and ask to stay on 75mcg for another 6 months to see if TSH comes up a bit more over time .
If the TSH is still this low (or if they refuse to continue prescribing 75mcg)
then i would try a compromise for now .... they may suggest going back to 50mcg ...... if they do , try to negotiate a smaller reduction to eg:
6 days 75mcg / 1 day 50mcg
or
5 days 75mcg/ 2 days 50mcg
or
62.5mcg/ day ......... for 6 months instead .
(62/5mcg can be done with 25mcg tablets ,either by taking 50 / 75 on alternate days or cut 25's in half to take same each day .. it is common to prescribe this way to fine tune the dose of Levo)
Try a slightly lowed dose for a few months , it is a good idea to give it a fair trial , as a very low TSH is best avoided if possible (TSH helps you convert a bit more T3 from the T4 that you take. and it can't do this if it's totally supressed ) .. and if nothing else , the fact that you have tried it , makes it easier to argue that you do need 75mcg if 62,5mcg makes you feel worse than you do now .
. Hope that helps a bit .....
others will have suggestion too .
ps i forgot to ask ... did you do this test about 9 am and before you took that days Levo dose ? ....
if not........ be sure that is how you do the next test the GP orders, This is the correct way to test. .... it is when the TSH is highest during the daytime .. and it prevents the 'peak' of T4 that shows up from a dose taken just before the test making the fT4 level look higher than it's true average for the rest of the day .
Thankyou for replying. The blood test was at 8.05am. I normally take 50mg at bedtime and 25mg early morning but missed both tablets before blood test and took them afterwards.Thankyou for your suggestions.
How long since vitamin D, folate, ferritin and B12 last tested
What were results
Make sure all four vitamins are at OPTIMAL levels
Delay retest as long as possible and book test for 8.45am
Last dose levothyroxine 24 hours before test
If Ft3 isn’t over range…..and no hyperthyroid symptoms you don’t need to reduce dose
Having been left on just 50mcg levothyroxine for years….it’s probably taking TSH a while to recover from shock of finally getting an increase in dose
You should see TSH rise slowly over next 2-6 months
Meanwhile
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Thankyou Slowdragon.My increase from 50mg to 75mg was mid October last year.
I take 50mg Accord at bedtime and 25mg Mercury Pharma early morning (a)though on one occasion I was given Teva).
Vitamins were tested via Medichecks last August and advice followed re supplements to take. When would you think will be a good time to get these redone?
My next bloods are to be taken 17th March at 9.05am.
I did go out for a meal the night before and drink some wine? Had a few sips of tea on morning of test too but didnt take either medication.
Mentioned Nice guidelines etc to him but he wouldn't budge.
I will hope that my TSH rises before my next blood test. I am still suffering from fatigue, upset stomach, swollen throat and have a goiter. Headaches have gone since rise in dose however.
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
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
Both dairy and gluten are inflammatory foods
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
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.
Thankyou for your advice.I have had a gluten test which was negative so could try gluten free and/or dairy free to help my stomach.
I had a scan on my thyroid May '22 which showed the growth. It is like a golf ball at the base of my neck but I feel this has decreased in size since my increase in medication (it's just a medium size golf ball now)
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GP denies I have Hashimotos
Increase in Levothyroxine
Levothyroxine dose increase
Increased symptoms on levo increase.
Increase Conversion of T4 to T3
