I have just returned from a very disappointing endo visit. I had to hold back tears in the consultation...
In my last consultation he told me that he was going to change my 125mg to take at night, and then re-test to see if this made me feel any better. He was also going to test coritsol and other things to see if there wasn't something other than thyroid going on. If not, he would offer me alternative solutions of T3 or NDT.
I have not felt better with just switching to the same dose at night- it's just been more convenient. It has SLIGHTLY helped me get up easier in the morning but this varies from day to day.
For reference, here are my symptoms: I have Hashis, symptoms have only improved slightly with levothyroxine. I am still tired. Brain fog. Memory loss. Not myself. Dry skin. It is less awful than it was before levo, but it is nowhere near how I want to feel for the rest of my life. Switching dose to evening has only made me 'slightly' less tired in the mornings. But now i get a crash late in the evening instead. It hasn't affected the way I feel throughout the day at all.
I shared my blood test results on here last night & some forum members told me that it was showing poor T3 conversion again. I was therefore hoping that this meant today was the day he was going to offer me those alternative solutions he spoke about last consultation. But... no. A big fat NO. He told me that my T4 and T3 did not show bad conversion. I asked him about the percentage through range and that I'd calculated it and it's low, and he said "not low enough to be bad conversion". He suspects that "something other than thyroid is going on here. I will refer you to an immunologist" so that he can figure out about supplementing and whether it's an adrenal fatigue problem. The only advice he gave me is to split my dose 100mg at night, 25mg in the afternoon so that I wouldn't feel the crash late in the evening as much?! He said the cortisol test I got was not enough to show because it was only slightly above range & I am currently suffering from a back problem (bulging disc in lumbar spine) so he said it is probably raised because of that. Bad timing to have this happen at the same time as my bloods.
I feel ... crushed. I thought he was going to agree with poor conversion and finally get me on either adding T3 or NDT. Now he's basically given up on me saying "thyroid numbers are all good, so if you're not feeling better this has to be a non thyroid related problem. The immunologist is best to figure this out."
Am i maybe not a bad converter? All of you lovely people on here have you told me I am- so what is this endo missing? What should I do? Should I once again try to switch endocrinologists? Please help. I am at my wits end.
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thyroidqueen12
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Thanks SlowDragon ! Below some points to discuss with you:
Before I was told (on here) that my Folate is low and maybe B12 also too low. Can you recommend the best supplement for me to take? I want to make sure i'm buying the right thing and a brand that has worked for other people.
Cortisol: I have also ordered a regenerus lab cortisol test to check this properly. The blood test he ordered was raised, but he thought this was related to my current back issue (bulging disc in lumbar spine) So i will take the saliva test from Regenous as I heard this is more accurate anyway.
Coeliac: i'm getting this blood test done on Thursday morning, so i will report back on this.
Splitting Levo: I will trial this now since he hasn't raised my dose or done anything else. He said if I'm taking levo at night to take the 100mg at night as usual, then the 25mg in the afternoon the next day to help with the tiredness late in the evening. Is it better to take the other 25mg in the morning then? Please advise.
Immunologist: What is your opinion on the immunologist? As I mentioned here, he said that my "thyroid seems to be all fine, so the issue must be elsewhere. I will refer you to an immunologist to look into other issues." Is this worth it? I'm already spending so much money on everything, I want to make sure this is worthwhile. Or am i better trialing these next steps and finding a better Endo?
Switching Endos: I will do the changes you mentioned above by myself and in the meantime until I can switch to a better endo. Please if you have any recommendations of good endos in London (who are open to T3 and NDT) and listen to the patients symptoms, please share!
Hi SlowDragon I have purchased the Thorne Basic B Complex to try. How much of this should I be taking and when is best to take it (with food/without?) Thanks!
Have you thought of doing the DIO2 gene test through Regenerus Laboratories? I have Hashimotos and I’m a very poor converter of Levothyroxine T4 to active T3. I too was tested for Addison’s via cortisol blood tests and two Synacthen tests. Cortisol was low but adrenals fine on the Synacthen tests. I finally went private only. I was diagnosed within two consultations as a very poor converter T4 to active T3. I was put on a combination trial of Levothyroxine plus t3 Liothyronine. Oh boy oh boy what a huge difference that made to my life. Suddenly I had the energy to do mostly anything. I had a load of bloods done after a couple of months. My cortisol had improved no end and has remained that way for a couple of years now. I got a DIO2 gene test also and it came back positive. I took the report to my GP who gladly scanned it onto my NHS file. The NHS Endo finally gave in and prescribed T3 medication. I believe it was the DIO2 report plus my private only Endocrinologist intervention. I’ve since worked on optimising my vitamins too.
I'm sorry that the appointment didn't meet your expectations. I've got an appointment next week with (NHS) obstetric endocrine clinic (due to fertility/miscarriage angle) and am very clear about what info I want, what questions answered and if I get less than that, I can understand the feelings you've described may be applicable for me too.
From what you've described, I do think your consultant was trying to be helpful with considering 'something else' going on, and amazing you've got an immunology referral. I'm not sure very may endos offer this, or are capable of thinking outside of the 'just prescribe levo box'! There are unfortunately two very complex angles to Hashis: the thyroid hormones, and importantly also the adrenals. If any single one isn't on track, we feel rubbish.
To explore this angle further for myself, I looked into finding a functional medicine trained physician, and managed to find a clinic relatively close to my home. The consultant is based somewhere else, so it'll be a video call, however, she is obs/gynae, women's health, thyroid conditions etc which for me is just the person I've been trying to link in with for soooo many years. This, of course, is all private, and requires a considerable financial investment, but again, I have high expectations of what I'll get out of that appointment. Coincidentally, the appointment is week after next, booked before the NHS one came through (via an off-the-cuff second opinion request to my GP which I never thought she'd agree to!) Nothing, then two buses at the same time 😆
My cortisol has always tended to be high, and it has a significant impact across my body, not in a good way.
Just recently completed the Dutch Plus test to check where hormone levels are at, and that'll be discussed during my private appointment. I had one done a couple of years ago requested by my functional nutritionist, and it is really detailed and eye-opening on what's going on at a much more cellular level than the usual NHS blood tests (if you can get them ordered of course!) Unfortunately, fairly expensive but I do think it's valuable, for me anyway.
With Hashis, we may well have other, as yet, undiagnosed autoimmune issues and the immunologist may be really helpful in discovering/ruling out possibilities, and understanding how they impact each other as well as your body as a whole.
I just got back from the Endocrinologist myself and they denied me a dose increase because of my TSH being just under 1 but my T3 was very low in the range. Just like you I had hypo symptoms. Increased my dose with extra pills I have from 112mcgs to 125mcgs 3 days a week. It's the first week but I already feel a difference. Sleeping better too.
So I plan to get a private lab done in 6 weeks to prove I'm still "in range" but a more optimal range. My primary seems much more open minded than my endo. Doctors too afraid to act can keep people sick or make people sick by going on TSH only. I'd ask to change doctors if they won't listen to you and your symptoms.
PS I've seen someone's blood results pre and post going gluten free on here somewhere, but their t3 and t4 both increased into a good range without a dose increase if I remember correctly. Just by cutting out gluten. Try it out. Hope everything goes well for you 🙏
It's very crushing, you have hope then it is dashed. It's a familiar experience here, you're not alone, try not to be too upset, the stress is not good, it will only exacerbate your symptoms and why should you physically suffer because of the negligence/ignorance of these people?
But the slight cloud lining is that an immunologist is a surprisingly left field recommendation and it may throw up something useful.
I have found they are open minded. There are a few what I call 'true' medical disciplines and immunology falls under it.
I had to go to immunology for 3 years straight for injections to calm my reaction to dustmite and when I was 'diagnosed' with fibromyalgia the Immunology Professor was brutally rude and said
"poppycock, what are they teaching GPs these days?? That's just a diagnosis to get rid of you, it's becoming trendy and it's essentially code for 'I don't know anything'. I objected. He still didn't back down "Yes yes, I note they have these new trendy titles, chronic fatigue as well now, ha! But it's not a disease. Nothing in the literature suggests it is"
I was really upset, being as I felt awful and now this consultant was essentially pouring scorn on my diagnosis.
So he said "well... if you don't want to listen, go upstairs, they have a pretend clinic up there I believe, that deals with people with pretend illnesses. I don't need to know how you'll get on."
I burst into tears, he handed me a tissue and he said. "I just saying that these people know nothing about the immune system. GPs know nothing. Something is wrong, I believe you, but some fibro nonsense is not what it is.. Now if you want, I can strike you off the clinic if you're so overcome by this indefinable thing"
I chose to stay in the clinic. Rude bastard I thought.
Just over a year later after doing some research myself, I went to find him to see if there was anything he could suggest to help me and he had retired a few months before. Unfortunately very old experienced, knowledgeable consultants like him that trained in pen, digging up physical papers and patient observation are retiring in droves.
But there was a thyroid section in the very same clinic. I don't know if this was 'thyroid and immunology' or just a thyroid section, but there was no real division except a piece of paper on the wall with the words Thyroid Clinic written in Bold pen. It was massively underfunded. I didn't know enough at the time to ask the Professor what it did. Missed opportunity.
So take some comfort in that you might end up somewhere where they may do deeper investigations of things that might be driving inflammation for e.g. They may give you a DIO2 test themselves, or test for other polymorphisms.
If push comes to shove you do still have the option of self-sourcing.
I know it may sound too simple to be true but make sure you have always the same brand of levothyroxine. I was having terrible symptoms, including lethargy and brain fog. Very, very ill! Then I found out it was due to mixing three different brands (formulas) to achieve my 137mcg daily dose. Talk to your GP in order to get same brand to compose dose. Another tip is to never cut levothyroxine tablets in half, as they're micrograms. I was advised on that by my endocrinologist. I'm a new person now, feel incredible well.
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