I haven't posted on here before but I am now at a point where I could really do with some advice. Sorry for the very long post!
I was diagnosed with Auto-immune Hypothyroidism in 2004, when I was 25 years old. Since then I have been on around 100 mcg Levothyroxine/ day. Other than when I was first diagnosed, my TSH has since been in the normal range. However, the last two years it has been suppressed at 0.02 but with a lowish T4 (12.0) and normal T3 (4.0). My GP looked at the TSH and said I was clearly on too much Thyroxine and should have my dose reduced. Despite me pointing out the fact that T4 and T3 were at the lower end and I was having symptoms of being hypo; weight gain, huge amount of hairloss, extremely cold all the time and depression. When I asked my GP why is the TSH so suppressed and T4 and T3 normal, she replied “I don't actually know”. Not very helpful.
I should also mention I was diagnosed with Paliandromic Rheumathoid Arthiritis in 2015. When I mentioned my thyroid issues to my rheumatologist she immediately referred me to an Endocrinologist.
The Endo I saw was OK. I asked if he thought the thyroid levels could indicate a problem with my Pituitary Gland and he said “Maybe, we'll see what the test results show up and possibly do further test if it points to that”. He arranged for me to have several tests done, results below. He wrote me a letter informing me that some of those test have come back Borderline for Cortisol and TSH, but not what they are borderline for!! Only that my GP should now test me yearly for my Cortisol levels and sort out my meds for my thyroid. I have no other face-to-face appointment with him, but I have so many questions which I feel I need to have answered. Having read the test results I am even more confused. From my understanding I have:
Adrenal insufficiency, Secondary Thyroid Insufficiency (which would indicate a problem with the Pititary Gland), Tested Positive for TSH-Receptor Antibodies (which are associated with Graves' Disease (even though I have been diagnosed with Auto-immune HYPOthyrodism), Thyroid Peroxidse AB Positive.
I would be incredibly grateful I anyone could give some advice of what you think I should do next. My GP surgery called yesterday saying they needed to see me to discuss some things from the letter they revived from the consultant. I really hope they aren't going to lower my thyroid meds again since I've only just started feeling better after having increased it from 100mcg to 125mcg/ day for the last 3 months : (
Synacthen Stimulation Test Result:
Cortisol: 0 min – 215
30 min - 428
60 min- 552
Notes from Lab: Inadequate response
ACTH: 9 (10-50 ng/L) = Low
TRH Stimulation Test
TSH: 0 min – 0.04
20 min – 0.17
60 min – 0.13
Notes from Lab: No significant response to TRH. Consistent with secondary thyroid insufficiency.
TSH-RECEPTOR Ab: 0.65 (0.00- 0.40 U/L) = High
Labs notes: Anti-TSH Receptor Antibodies are associated with Graves' Disease.
Thyroid Peroxidase Ab: 91.4 (0.0 – 5.6 kU/L) = High
Lab notes: TPO result is Positive.
Any thoughts would be very welcome!
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LinaRain
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If you have secondary hypothyroidism TSH is biochemically insufficient and should be ignored as an evaluation of thyroid health and GP should make sure that the lab tests FT4 and FT3 when you have thyroid function tests by writing secondary/central hypothyroidism on the blood orders request. If your FT4 and FT3 results are low in range you are undermedicated and dose should be increased until FT4 is half to 3/4 way through range and FT3 is over halfway through range.
You have positive Graves and TPO antibodies. Graves usually causes hyperthyroidism and TPO hypothyroidism but it's not possible to be both hyperthyroid and hypothyroid. In cases of secondary hypothyroidism thyroid is usually healthy and it is the lack of TSH caused by pituitary dysfunction which causes the hypothyroidism.
Many people have found that 100% gluten-free diet is helpful in reducing thyroid antibodies.
Essential to test vitamin D, folate, ferritin and B12.
Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low vitamin levels
Low vitamin levels stop 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
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Adrenal result suggests perhaps you need a second opinion
Thank you so much Clutter and SlowDragon for your helpful advice!
As it happens, I am already on a strict Gluten free diet ever since I was diagnosed with Coeliac Disease over 7 years ago. When I was first diagnosed with Hashimotos back in 2004 I don't remember ever having the antibodies for Graves Disease, though I can't say for sure since I don't have a record from all the blood test results from back then. I've had three scans of my Thyroid and the left lobe is apparently non existence and the right lobe is also significantly reduced, all due to Hashimotos I've been told.
My biggest worry is that the Endo has just written to my GP stating that my TSH is too low and they should lower my Thyroxine meds. It seems he hasn't taken any note of the recent lab report notes which states (in response from the TRH Stimulation Test):
"No significant response to THR. Consistent with Secondary Thyroid Insufficiency".
So if I now have Secondary Thyroid Insufficiency as well then the GP should, if I've understood you right Clutter, not take consideration of my TSH but check FT4, FT3.
Sadly I have no reference ranges for the THR stimulation test as I was only given the end result along with their notes.
Now I just got to convince my GP this : ( and I will definitively try asking for a second opinion or at least to have another face to face meeting with the Endo so I can get some answers other than a letter in the post stating "All is Okish".
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