I have hashimotos and I have secured an NHS Endo appointment next week. I keep telling the GP surgery I self administer T3 but they don't know much about it to be honest. They referred me to Endo saying I am hyper but historically I am hypothyroid and hence T3 which I have been on for nearly four years without issue. Please would you help me interpret my GP test results
Serum cortisol level 303 nmol/l; No clinical details provided - please use the drop down menu whenrequesting cortisol to ensure appropriate interpretation. A random(preferably 9am) cortisol of >300 nmol/L is required to exclude
My cortisol test I pushed for and the test was taken at 10.30am. I am historically low on cortisol and think I should ask for a retest but apparently this is fine.
I appreciate T4 is suppressed when on T3, that doesn't bother me but, like my other results, they "Advise prompt discussion".
Please help me be prepared for all of the end's "prompt discussions". Thank you.
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Letty222
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Thank you for replying. I am on T3 only and yes, I do split my doses into three smaller doses the last was about 12 hours before test. I will have to get the D, folate, ferritin and B12 tested privately. I take selenium, vitamin D and B daily (B in morning) as well as omega 3. I am not strictly gluten free - I try to be but it creeps in, I need to be more strict. I do not take milk but do eat cheese so no, not dairy free. I take 75 mcg of Tiromel T3 daily.
Thank you. I will ask for these tests, failing that get them privately. My diet is good but gluten is very bad for me and I think I need that investigating as well. Thank you for taking the time to reply.
If already mainly gluten free there’s no point getting coeliac blood test
Majority of Hashimoto’s patients are gluten intolerant not coeliac
Gluten free diet needs to be absolutely strictly gluten free to be effective
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.
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. I will do the coeliac blood test at some point but, mainly gluten free (no bread, pasta, white potatoes (mimicry I understand) and other wheat products has brought my antibodies down from nearly 600 about three and a half years ago to 296 that it is now. I know this isn't ideal and will work harder to get better results but, funds tight I need to address tests one at a time, or find a good deal! Thank you SlowDragon for all the info and links.
Your fT3 levels, if correct, are very low and would suggest you need a daily increase in your T3 . It may be a hashimoto's swing though. Don't ever increase by too much at any one time though or you could give yourself more problems. If you feel ok I wouldn't increase until you retest to see where you're at. Remember you need to stop any supplements with biotin in it 3-7 days before testing. Your TSH levels are very low (this will probably what warranted the need for the prompt discussion. TSH is always suppressed when you take T3 though, you can tell them that. If you were overmedicated (as opposed to being hyper) your T3 levels would be higher than 6.8. You can tell them that you understand that they're concerned about the TSH but that you are happy to continue with your T3 only. Stand your ground on that. You can take full responsibility for it. The guidelines say they should work with you and your symptoms and not just blood results. If my T3 levels were as low as yours I wouldn't be able to function. Best of luck.
Should also have said that your low fT4 is not an issue because you're only taking T3. Did you ever take levothyroxine? If you did, why did you change to only T3? I only ask because most people need both fT3 and fT4 levels to optimal, which for most would be in the mid to high end of the range.
FAB-Jellybean thank you. I am on T3 only and have never been on T4. I understand that the low fT4 is not an issue as I am only taking T3 and appreciate your confirmation as it is easier to not be bullied by endos/GPs etc when I am confident. I don't feel super well, with afternoon crashes and some brain fog, which you may gather but with the lab people (NHS) and GP shouting I am overmedicated and hinting I may be hyper when I really am hypo I have been putting off increasing the dose. I think I may have had a hash summertime swing (sounds more fun than it was!) . I don't feel overmedicated and, as you say (thank you for explaining) my T3 levels would be higher if I were overmedicated. My heart rate is good, not bouncing around all over the place . I function but am not optimal.
I will need to mention it to Endo as dr can’t even interpret the results, saying thyroid is complicated and referring me on. Thank you though. I will mention it.
Because you don't avoid T4 due to a bad reaction, another option you have is to try adding T4 to your T3. You may find that feel better on the combination. I certainly do. See the link below for more information on the guidelines for GPs including the conversion of T3 to T4. For every reduction in 10mcg of T3 they recommend increasing T4 by 50mcg. It may also explain a bit more about what their concerns are to give you a chance to be ready for whatever they say.
Your advice is invaluable to me as I scramble to make sense of it all. Thank you. I am pushing for a retest before 9am for my cortisol as it was borderline on a 10.40am test. I will read that link and print off what I should for next week. Thank you. I will also consider adding in T4 when I see them but if I don’t convert well I don’t understand the requirement but will consider it.
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