Help and advice desperately sought! Should I carry on with T3?

[joani3b3t]

Hello, my first post and a bit of background: diagnosed 1997, not medicated till 1999. Have been on 100 - 125 thyroxine more or less since then. Wonderful local endo (since retired) put me on T3 ten years ago and fortunately his word has been sacrosanct since then. Sadly his influence has waned and gp now wants to take me off. Forgot to take T3 away at Christmas and realised I didn't actually feel that much different without it so decided to stay off for a while and get blue Horizon test, results below. Symptoms are and always have been with or without T4, T3, fatigue, joint pain and stiffness, cognitive impairment, depression etc - the usual in other words!

Results (meds 125 thyroxine/0 T3)

Ns CRP 2.66 (5.0)

Ferritin 139. (13-150)

TSH 0.55. (0.27 - 4.20)

T4 Total. 93.2. (66 - 181)

Free T4. 15.40. (12.0 - 22)

Free T3. 3.29. (3.1 - 6.8)

Anti-thyroid periodise 21.0 (>34)

Antithyroid thyroglobin 16. (>115)

Vit D 40

B12 353 (deficient 145/insufficient 145-250)

Serum Folate 13.80 (8.83 - 60.8)

Last test results taken by gp June 2017: medication 125 T4/ 10 mg T3

TSH 0.02. (0.30-4.20)

Free T4 11.8 (9.0-19.0)

free T3 4.1 (2.6-5.7)

Also take 1 mg Alfacalcidol per day as prescribed for low vit D by gp.

Any insights into these test results and advice as to whether I should fight to stay on T3 would be so appreciated. Thank you in anticipation!

[humanbean]

Your TSH is in range, but it looks too low to me (i.e. I would have expected it to be higher) for someone with a Free T4 below mid-range and a Free T3 which is practically on the floor. It may be that your doctors have kept you under-medicated if they have been looking at your TSH to guide their treatment. There is a possibility you have secondary hypothyroidism i.e. your pituitary is unable to supply you with sufficient TSH to make your thyroid produce enough T4 and T3.

Your antibody results show that that you probably don't have autoimmune hypothyroidism, so there is a chance that your thyroid is perfectly healthy, it just isn't getting the right signals from your pituitary.

[joani3b3t in reply to humanbean]

Thank you for your reply humanbean. My doctors think I am overtreated as they say my TSH is suppressed. I am going to look into secondary hypothyroidism as it's not something I am familiar with and see where that journey takes me!

[Clutter in reply to joani3b3t]

Joani3b3t,

Secondary hypothyroidism is determined by low-normal TSH and low/below range FT4 at diagnosis. Treatment is the same as for primary hypothyroidism.

Your results look better to me on 125mcg T4 + 10mcg T3 but FT3 was still low. The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association... but I don't know it is worth pursuing if you don't feel any better with 10mcg T3.

VitD 40 is insufficient and that may be why you have joint pain. My sister's GP prescribed 2 x 20,000iu D3 when her vitD was 40.

Did you have low calcium? I thought Alfacalcidol was prescribed for hypothyroidism to balance calcium and vitamin D. google.co.uk/search?q=Alfac...

[joani3b3t in reply to Clutter]

Hello Clutter, I had high calcium and in fact had a parathyroidectomy a few months ago. My calcium and pth levels are now normal. I have just bought the sublingual vit d and b12 as suggested by SlowDragon and today re started my T3 if, as you say, there are guidelines that we shouldn't have our T3 stopped. I will gradually increase to 15 as suggested by humanbean. When I was diagnosed with hypoparathyroidism my endo told me my bloods showed I had had it for 12 years - not surprisingly I assumed that all my symptoms over the years had been down to this and that after surgery I would be fine. Sadly this hasn't been the case so I am now re looking at my thyroid levels for answers. Of course there is the possibility that as this has been a 20 year journey I have now just grown into my aches and pains! Many thanks for your help Clutter.

[Clutter in reply to joani3b3t]

Joani3b3t,

If you had high calcium you probably had a parathyroid gland tumour causing hyperparathyroidism. How many parathyroid glands were removed? I don't understand why you are prescribed Alfacalcidol for hypoparathyroidism if calcium and PTH are normal? VitD raises calcium so unless calcium is low you shouldn't need Alfacalcidol too.

Will you be able to persuade your GP to increase T3 dose to 15mcg? You'll probably have difficulty retaining 10mcg if GP wants you off it. Has GP said why s/he wants you off T3?

[joani3b3t in reply to Clutter]

Just one gland was removed and blood tests done three weeks after surgery showed calcium and pth levels normal again. I was prescribed Alfacalcidol with my high blood calcium and my gp has not taken it off my repeat prescription list since my surgery. She has in the past told me she thinks my TSH is suppressed and she is very cost conscious so I am just assuming she will try to take me off of it. I have enough of a backlog of T3 (i request my T3 supply every other month as I only take half a tablet per day but pharmacy has mistakenly supplied me monthly a couple,of times) that I can try it and see how I feel. As mentioned earlier Dr Skinner proposed a dose of 150 thyroxine rising to 200, and 20 mcg of T3.

[SlowDragon Administrator]

Your FT3 has dropped significantly and wasn't really high enough on 10mcg. You possibly needed 15mcg daily

Your FT3 is now almost at bottom of range. FT4 not very high either. If you are not going back on T3 you will need to increase T4. But T3 likely better option

Assuming in UK

Your vitamin D is far too low. You need higher dose of supplements. Results need to be around 100nmol

Many of us find Better You vitamin D mouth spray is good as avoids poor gut function or malabsorption issues. Perhaps try 3000iu daily and retest in 2-3 months

Vitamindtest.org.uk £28 postal kit

GP usually only prescribe 800iu vitamin D, it's rarely enough with thyroid disease

B12 and folate also on low side. You might consider supplementing a good vitamin B complex and sublingual B12 lozenges

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Would expect these vitamins have got worse since stopped T3. Did you have any vitamin test results from when on T3?

Have you ever tried strictly gluten free diet? Can help with brain fog

Google brain fog and gluten intolerance.

Gluten intolerance and leaky gut are common with thyroid issues

[joani3b3t in reply to SlowDragon]

Thank you Slow Dragon for your detailed reply. No vit tests except vit D before now. Will take your advice and supplement sublingual vit D and B12 in suggested amounts. Have in the past gone gluten free but didn't feel it made much difference - I do know I feel much better when I cut out all heavy carbs though and have been trying to gear myself up to do that - so difficult in this weather (yes, am uk based)! I was fortunate enough to see Dr Skinner who prescribed a slow increase of T4 up to 200 mg and T3 to 20 mg daily. My gp washed her hands of me on these amounts and of course after he sadly passed away I had to return to her care and I hadn't been on those doses long enough to see if they would help me. I think I will return to taking T3, possibly increasing dose to 15 mg per day as you suggest together with vit supps. Will also look into pituitary issues. Many thanks again for your help.