Totally confused now....help with understanding endocrinologist please

[Aesm]

A week or so ago I posted the following

‘ would be grateful for a little advice following my recent blood tests so that I’m prepared when I return to see the endocrinologist.

TSH 0.35 (0.3-3.6)

FT3 2.0 (2.2 - 4.2)

FT4 0.83 (0.8 -1.7)

I am currently on 100mcg levothyroxine (triosint). When I last saw the endocrinologist she suggest that I may need to have my medication lowered as my TSH was suppressed at 0.03, (FT3 2.21 and FT4 1.06). She didn’t rush to do this without a further blood test , but she did refer to me as having sublinical hypothyroidism, (Hashimoto's TPO 88.74 (1.0 -16 ) , Which I’m not sure is the case. I am concerned that the endo will want to lower my meds although am feeling much better on this dose, although still not quite right, and clearly my FT3 and 4 levels are still pretty low. Is it significant that she says sub clinical, in respect to low fsh levels? I live in Italy (where the health care is actually very good I think) and need to go prepared to help with language etc.’

I received lots of helpful replies from you lovely people and felt fairly confident that I was getting an understanding of treatment etc...... BUT...On checking what the endocrinologist had written, it was actually sublinical HYPERTHYROIDISM. Now I am even more confused! I saw her on Friday with my most recent results (above) and she says my FSH needs to be at least one and that I am over medicated. As you can see my FT3 is just under range and FT4 just in range. When she said I need to lower meds I said to her that I didn’t feel this was a good idea as I am just starting to feel relatively well and don’t want to go backwards. She insisted.... but says continue with taking my 100 u tirosint 6 days of the week and on the seven day take 50 u. ..... so my question is, will this really make much difference? have to see her again in four months and she only wants FSH and FT4 tested as she says the FT3 test is unreliable . All of this seems to fly in the face of all the advice I have read on this site., I am so confused now. Thank you.

[MissGrace]

Run away fast! This endo is purely going by TSH and is going to make you ill and keep you ill, she isn’t interested in your symptoms and probably did none of the physical tests to see if you are over-medicated - though your FT3 and 4 results clearly show you aren’t!

Your actual energy levels - indicated by your FT3 and your stored energy (FT4) are low! Something else is going on here for your TSH to be so low too - you need to see someone who really understands the thyroid-pituitary axis, because yours appears to have lost the plot. An endo who really understood the thyroid would have picked up on this anomaly in your results.

I’m sure there are people on here better placed than me to advise, but this endo is USELESS. Escape!

🤸🏿‍♀️🥛

[greygoose]

I agree. This endo is dangerous. She has no idea what she's doing, and no understanding of treating hypo. You've given her a fair shot, but she's not up to the job. Leave her before she ruins your health!

[SlowDragon Administrator]

Your very first post here

healthunlocked.com/thyroidu...

Confirms likelihood of central hypothyroidism

Dosing should be according to FT3 and FT4, not TSH

You need dose increase in Levothyroxine

Bloods retested 6-8 weeks later

Have you had coeliac blood test, vitamin D, folate, B12 and ferritin tested too?

[Aesm in reply to SlowDragon]

Thank you for your reply, no I haven’t had those tests , I’ll speak to my GP to get them done. When I first posted here, I was seeing a GP from a nearby village who spoke English and was very open to discussion about hypothyroidism and even when my TSH was a little suppressed he increased my levo because FT3 and FT4 were, like now hovering on the low in range or just under, and didn’t think it was necessary to see an endocrinologist. Because of my history of having an incidentally found pituitary microadenoma, he did blood tests for the relevant secretion problems, all of which came back within normal limits. The thing was that because he wasn’t in my area I eventually had to officially register with my local GP, who doesn’t speak English, which isn’t such a problem now since my italian is improving. She seems to be an excellent GP and was keen to ensure that we (hubby too) have good medical care. She made the referral for me to see the endocrinologist as if you have hypothyroidism you then get registered for free medical treatment. But unfortunately now it seems that I’ve fallen into the cycle that many people have spoken about on this forum. I did ask her if I could possible have central hypothyroidism but she said no not at all. I am starting to feel rather overwhelmed now as I have also just been diagnosed with amyopathic dermatomyositis, and am under the care of a good rheumatologist who is running an array of tests and scans and has put me on prednisone. I currently awaiting an appointment for a full body PET scan. It really does help to have access to a forum such as this.

[SlowDragon Administrator in reply to Aesm]

As you have had Hashimoto's confirmed having low vitamin levels are extremely likely

Gluten intolerance is extremely common with Hashimoto's

Italy is apparently extremely good on gluten free options, as ALL Italian children are apparently tested for coeliac. Therefore numbers diagnosed are pretty high, especially as Italian diet is so wheat dependent

Non Coeliac Gluten sensitivity and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

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

restartmed.com/hashimotos-g...

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.

88% benefit from strictly gluten free diet

thyroidpharmacist.com/artic...

Going gluten free is a strategy that everyone with Hashimoto’s should try. In some cases, we see a complete remission of the condition; in other cases (88% of the time), the person feels significantly better in terms of bloating, diarrhea, energy, weight, constipation, stomach pain, reflux, hair regrowth, and anxiety.

todaysdietitian.com/newarch...

Many clinicians report that eating a gluten-free diet may help improve thyroid function in nonceliac gluten intolerance. “Getting gluten out is primary for patients with Hashimoto’s, even without celiac disease,”

[Aesm in reply to SlowDragon]

Thankyou Slowdragon, I will definitely look at all those links with interest, and arrange some further blood tests. The Italian health service is genenerally good and has been rated second in the world apparently, so I am hopeful that I’ll get there.....

[SilverAvocado]

Really shocking that an Endo would say you are actually Hyperthyroid with that set of results! Unfortunately this has confused you because it's hard to believe that doctors could be THAT bad.

As you already have a confirmed pituitary micro tumour it makes it even more clear cut to say that your TSH response is very low. Unfortunately even quite good endocrinologists often know nothing about variation in TSH response.

As you've had two quite good GPs is it possible to just 'forget' to attend your endo appointment and get discharged back to the care of your GP?

[Aesm in reply to SilverAvocado]

Thank you SilverAvocado. Yes it’s very tempting to do just that!