My endo is saying I’m fine. What do you think I can do with these results?

[Shymxo]

I’ve not been fine for a good few months. I’ve got other conditions but I’ve been progressively getting worse and have maintained I think it’s my thyroid. I’ve got hashimotos and have been off levo since 2022.

My endo sucks, he falsified to my GP when they requested guidance (after he discharged me) that my t4 and t3 are fine but I asked him to prove it because I know he hadn’t tested the levels in 2 years. Fast forward he had to see me face to face to prove me wrong but couldn’t so patronised and gaslit me and told me my adhd is making me worse. To humour me he did do bloods again as I had worried pituitary causes being an issue.

I’ve got the bloods back and have got my previous. Question is what do I do? He’s said “I’m fine” but I am so so symptomatic and I’ve maintained it’s been my thyroid since I was at 1.9 TSH. All my symptoms are pointing towards thyroid or hormones.

My vitamins are all fine.

Am I barking up the wrong tree completely here?

Bloods

October 2024

Serum cortisol: 584 nmol/L  ( - )

Serum oestradiol level: 179 pmol/L  ( - )

Serum FSH level: 4.0 iu/L    (3.0 - 13.0)  FSH/LH reference ranges apply to follicular stage only

Serum LH level: 9.7 iu/L    (4.0 - 14.0)

Serum prolactin level: 535 mu/L    (100 - 500) Prolactin levels up to 1000mU/L may reflect stress.

Serum free T3 level:  5.3 pmol/L  (3.1 - 6.8)

Serum free T4 level:  16.5 pmol/L  (11.0 - 22.0)

Serum TSH level    4.17  mu/L    (0.30 - 4.20)

Jan 2024

FSH: 2.3 iu/l low

Prolactin: 88 mu/l

LH: 4 iu/l

TSH: 1.96

Testosterone: 0.9 nmol/l

June 2023:

FSH: <1.0 iu/l LOW

LH: <1.0 iu/l LOW

Prolactin: 179 mu/l

SHBG: >200 nmol/l HIGH

TSH: 2.15

[Jaydee1507 Administrator]

What was the reason you stopped taking Levo?

What time of day was your latest blodo test? Highest TSH is at 9am or earlier.

Your latest TSH of 4.17 shows your thyroid is struggling although most doctors wouldnt admit to that unless you are above range.

Are you testing and supplementing low vitamin levels? If so with what?

[Shymxo in reply to Jaydee1507]

I went to him privately after suffering with symptoms even on Levo. I was swinging under over and my gp weren’t being helpful. He thought it was just postpartum thyroiditis and technically he was correct because the levo was sending me over but they found my hashimotos as the same time. He is of the opinion I’m at a higher risk of going hypo but may not happen. I’ve spent the last year begging them to help me because I am not okay and I know right now I’m heading towards how I was when I first was diagnosed as hypo in 2021.

I know they see in range and think “it’s fine” but I can honestly say I recognise exactly the point I was symptomatic and it can only be down to this.

I had my blood test at 8:51 to be precise lol

My vitamins are being tested and are all okay. I do have thalassemia beta trait so I appear “anaemic” on tests but they check ferritin etc to be sure. Plus I have to be near enough dead for them to risk giving me iron lol.

I take individual supplements including D3, magnesium and b12.

[Jaydee1507 Administrator in reply to Shymxo]

The early days and years of Hashi's can bring quite some changing levels which is likely what you are going through.

Where possible its best to get an NHS diagnosis and start treatment with the NHS as they wont always accept a private diagnosis meaning you would forever have to be seeing a private Endo/Dr.

Have you tried any dietary changes such as eliminating gluten strictly from your diet, or dairy? This can help many with Hashi's.

When did you last check vitamin levels as its good to know if you're taking enough supplement?

Currently you're well on your way to being hypo but things may change again in a few months either way. Recommend retesting in 3 months at around 9am and fasting, no biotin containing supplement for 4-7 days before test.

[Shymxo in reply to Jaydee1507]

I was diagnosed with underactive in 2021 and by end of 2021 hashis by my endo who I went to privately but have been under on the NHS since.

I’ve tried gluten free etc. Honestly everything that can come up in hashimotos management I’ve attempted. Even intermittent fasting that didn’t end well.

Vitamins last done in September as I had an incident where I lost sensation in my limbs (ongoing symptom) but it ended up with me falling down the stairs. They suspected MS and I had an MRI which was all clear but I had previous folate deficiency due to metformin so they wanted to check everything just incase that was causing issues. I don’t have all of them to hand but b12 was 512 (max range 640) and folate was 6.6 (range 3 - 20). Vitamin D if I remember rightly was actually higher then the range but not by much.

[Jaydee1507 Administrator in reply to Shymxo]

You're not barking up the wrong tree at all!

If you have issues with folate then a B complex would suit you well. Your folate is too low, need to aim for around 20 depending on range.

The B12 you quote is a serum B12 test as opposed to the more accurate active B12.

How much B12 are you taking?

B complex suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

If vit D is over range then drop back on supplementing slightly.

What about ferritin?

[Shymxo in reply to Jaydee1507]

Thank you I’ll definitely look to get a test on actuals. Ferritin was 120 (28-200).

Can’t remember my b12 (I take a good few meds so get confused). I’ll go through all of those thank you.

[Obsdian]

I was thinking the same. You just have to sneeze and that tsh could go out of range... Nothing to do with adhd. Bizarre. New endo time.

[Shymxo]

Thank you for making me feel validated. I am at a point where I’m actually considering is this all just me making it seem worse than it is. It’s impacting me so much, i have no interest in doing anything I sit there like a shell at home and every day just getting myself to function is so hard. I recognise this is mirror to how I was before.

The other thing is that I now take stimulant adhd meds, a high dose too. Two months to a month ago this was propping me up in the am. Not as much as usual but I’ve seen a steady decline in its effectiveness. Right now it’s basically not doing a whole lot. That’s a huge red flag for me.

The problem I have is I cannot figure out how I see another doctor. Privately he is now the only endo in two counties, his nhs clinic there’s two others but I’m assuming from my friends experience they are exactly like him. My GP I went to back in March when I started getting bad as I was discharged asking for them to just test my full panel and please help which then resulted in them going back on the yes and asking him for advice and guidance which is when the whole lying about results came about and brings me to today.

I don’t know what other option I have. I honestly can’t go on like this.

[Shymxo]

West Midlands

[Shymxo]

It’s not I checked with the adhd clinic and my endo actually confirmed that there’s no impact on my hormone levels. I even tested it out by not taking the meds for 2 weeks which was not fun from an adhd side but no improvement to my symptoms.

My symptoms have been going on since before I even started meds but have just got worse over time and what correlates is my tsh increasing.

[Obsdian in reply to Shymxo]

Adhd meds are also prescribed for people suffering fatigue so that's another thing to consider if you are feeling fatigued still on those.