Can anyone help not sure what to do next?

[BigBlueBear55]

I have recently had tests done again and my TSH is slowly rising again, starting to feel tired and puffy. A couple of years ago i tried Levo but didn't tolerate it well at all. What can i use to get it reduced?

[SlowDragon Administrator]

previous post 6 years ago

healthunlocked.com/thyroidu....

Please reread

What are your most recent results and ranges for

Vitamin D

Folate

B12

Ferritin

Exactly what vitamin supplements are you taking

As you have Hashimoto’s are you still on absolutely strictly gluten free diet

Have you tried dairy free diet too

Please add most recent results and ranges for

TSH

Ft4

Ft3

How much levothyroxine did you start on previously

Which brand

Suggest you start again

Try Vencamil levothyroxine as it’s lactose free

Starting on 25mcg daily initially

And increase SLOWLY upwards

Retest thyroid levels 6-8 weeks after each dose change

[SlowDragon Administrator]

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get prescription written for Vencamil

healthunlocked.com/thyroidu...

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

[BigBlueBear55 in reply to SlowDragon]

OK, i am gluten free. When i started the Levo just before i had raised my iron levels up because they were very low. This was around the time of covid and i only took a few doses and seemed to flip very quickly to the symptoms of overactive thyroid, losing hair, palpitations, insomnia , extreme anxiety. I ended up having a psychosis . In hospital my TSH was 2.5 or something around that number it had gone from about 10 to that in a short space of time.

The endo called in lockdown and said he thought it was opening up my blood vessels too quickly.

My last results were TSH 9.13 range 0.27-4.2

FREE T3 range 3.1-6.8

FREE THYROXINE 12.7 range 12-22

My antibodies came down from 1000 plus at some point but are still in the 200s 300s each.

Vitamin D is low but when i take high doses i have issues, a few years ago after dosing up when i got my MS diagnosis i ended up with kidney stone.

At different periods in my life i have had what i now believe could have been Adrenal crashes the last time i thought i was dying.

[SlowDragon Administrator in reply to BigBlueBear55]

My last results were TSH 9.13 range 0.27-4.2

FREE T3 range 3.1-6.8

FREE THYROXINE 12.7 range 12-22

These tests were done very recently?

Was test early morning

Have you tested full iron panel including ferritin

B12, folate and vitamin D retested?

Vitamin D is low but when i take high doses i have issues

So try increasing vitamin D SLOWLY

[BigBlueBear55 in reply to SlowDragon]

Yes, i always do early fasting blood tests. Thanks for the replies.

[SlowDragon Administrator in reply to BigBlueBear55]

So Ft4 extremely low

TSH high to try to drive Ft3 up

You need starting on levothyroxine

Free T4 (fT4) 12.7 pmol/L (12 - 22) 

Ft4 only 7.0% through range

Free T3 (fT3) 4.7 pmol/L (3.1 - 6.8) 

Ft3 43.2% through range

You may need to start very slowly eg 12.5mcg daily (cutting 25mcg tablet in half)

Build up slowly

[Huffalump in reply to BigBlueBear55]

I am interested in your experience of psychosis when you had symptoms that seemed to imply overactive thyroid. I once had a psychotic episode where I was completely 'hyper' running up and down the road, barely slept for 3 weeks, barely ate, and someone called the police. The police got me sectioned, and once in hospital I was examined by a doctor who said I had a palpable thyroid. They asked to take blood tests (which I now realise were to diagnose a thyroid problem) but I was psychotic so refused. They then diagnosed me with schizophrenia and tried to put me on psychiatric drugs. The psychosis stopped and they said it was the psychiatric drugs that had stopped it. But of course, I was also eating and drinking properly in hospital and sleeping a lot, so maybe the thyroid issue subsided. As soon as I left hospital, I stopped the psychiatric drugs (which were appalling and gave me horrible side-effects that they wouldn't believe or address) and I've never had a psychotic episode since and clearly didn't have schizophrenia, although their diagnosis stigmatised me for some time afterwards. Two years ago I was diagnosed with an underactive thyroid instead. Since joining this forum a few weeks ago, I have learned that sometimes the thyroid when it starts to go wrong, fluctuates between overactive and underactive, and now I'm looking back on that experience from 25 years ago and wondering if indeed it was my thyroid that caused that psychotic episode. I know that this post won't help you at all, but it's the first time I've seen anyone else equate a psychotic episode with an apparently overactive thyroid, so I just thought I'd comment...

[BigBlueBear55 in reply to Huffalump]

Unfortunately all of this happened at the beginning of covid as well so it was hard to unravel it all to be fair. I believe now reading other people's accounts with similar issues that i had covid psychosis, the virus attacked my brain, i also have MS . The problems with taking Levo were just before covid.

Luckily i got in contact with my MS nurse in the hospital and they arranged a brain scan which showed new lesions, even though they knew all about my medical conditions in that place i felt they were so eager to diagnose something else even though i have never had anything like it before. I had read about Hashimoto's Encephalopathy before and often wondered if it was that before i got diagnosed with MS.

[BigBlueBear55 in reply to BigBlueBear55]

I also barely slept and couldn't eat too, not like me at all 😆

[Huffalump in reply to BigBlueBear55]

Thanks for answering! It's all very curious and difficult to disentangle. I'm beginning to think my episode was something to do with my thyroid, but thankfully I've never had another episode... At least you got a brain scan out of your unpleasant experience. Though finding more lesions isn't great news, extra information sometimes helps makes sense out of things that are happening. All the best! Huffalump.

[BigBlueBear55]

Sorry missed FREE T3 4.7.

[BigBlueBear55]

Thanks, just read through again, it was my blood pressure that shot up high and chest pains, normally my blood pressure is low and i need regular salt to stop it going too low. The endo said he thought my blood vessels were opening up too quickly.

[SlowDragon Administrator]

if you have suspicions of Addison’s, adrenal exhaustion or low cortisol endocrinologist should be testing adrenals BEFORE starting on levothyroxine

Are you under care of endocrinologist?

Roughly where in U.K. are you

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS

thyroiduk.org/contact-us/ge...

[BigBlueBear55 in reply to SlowDragon]

I have not had any follow up appointments with the endo since then, I live in Yorkshire.

[SlowDragon Administrator in reply to BigBlueBear55]

Some endocrinologists on list do zoom

[waveylines]

Most require face to face initially. Research carefully and ask for feedback.