Can someone talk me through thyroid test results (10 years worth)

[KatyMac]

Ok exaggeration! There are only 5 but after the big chat thread about thyroid I feel a bit triggered

I have menopause IBS ME/CFS FM hypermobility malabsorption (sp?)

Serum TSH level 4.10 mIU/L [0.27 - 4.2]
Serum free T4 level 12.3 pmol/L [12.0 - 22.0]

Serum TSH level 7.00 mIU/L [0.27 - 4.2]; Above high reference limit
Serum free T4 level 14.6 pmol/L [12.0 - 22.0]

Serum TSH level 2.20 miu/L [0.27 - 4.2]
Serum free T4 level 12.1 pmol/L [12.0 - 22.0]

Serum TSH level 2.87 miu/L [0.27 - 4.2]
Serum free T4 level 15.0 pmol/L [12.0 - 22.0]

Serum TSH level 3.18 miu/L [0.27 - 4.2]
Serum free T4 level 14.9 pmol/L [12.0 - 22.0]

Symptom wise
Y Feeling out of sorts?
YY Constantly fatigued/drowsy, having afternoon naps?
When from Weight gain?
YY Digestive issues?
YY Bloating?
Not so much - IBS - Constipation?
Y Cold sensitivity
N Body hair loss?
YYY Stiffness, joint pain.
Y Dry eyes?
Y semi successful bladder repair - Frequent urination?
YYYY Muscle aches and tenderness?
YYYY Forgetfulness?
YYYY Mind fog?
N Dry skin, dry hair.
Y Yoyo weight.
Y Disturbed sleep?
N Acne flair ups?
N Fingernails that flatten round your fingertips?

Do I have to go and make a fuss? Remember I have pre-existing conditions so everything I have is a manifestation of those (including tennis elbow - undiagnosed for nearly 6 months & a large (avocado sized) fatty lump in my abdomen that was my ibs)

Yes on HRT had it checked and increased in the summer by a private specialist

How much thyroxine are you taking?

None

I just am trying to find a reason for feeling so crap

I've spent more than half my life searching for a way to feel better

Supplements, new treatments, meditation, yoga, alternative therapies

Everything new seems to be hung on the hook of a previous diagnosis

And now at 55 I'm slowing down, becoming 'old' & I just want to get on with my life with less pain, less cognitive issues

I'm fed up with feeling 'poorly' all the time

I have the same. TSH all over the place but as t4 is within range they say my body has it under control

Get blood test to check for thyroid antibodies,It could be Hashimoto's disease which can cause fluctuating thyroid levels. Have you been tested for coeliac disease? Often associated with thyroid issues. Any history of autoimmune illness in family members?

Sorry you feel so unwell and can't get answers.

Coeliac was first checked in the late 90 but I've had 2 further colonoscopies since

I think I'm going to have to get a private blood test

You really should not have to wait another three months. Your levels are not alright and haven’t been for a long time. They should give you a trial of thyroxine to see if that helps your symptoms and brings your TSH into range.
Also you need testing for antibodies. If you have Hashimoto’s then your TSH ideally should be around 1, to feel well. Mine is just under 2 at the moment and I would feel better if it was closer to 1. If it goes up to 3 or higher I feel terrible, so small changes can affect people significantly.

Im going to write a paragraph for the online consultation thing

May I have help?

I understand that retesting in 3 months is standard but as my previous TSH was only just on range and the one before that was out of range (like my most recent one) I feel this is an ongoing problem and that my thyroid may be fluctuating over time. MY FT4 is towards the lower end of the range consistently.

Id like to be tested sooner for Thyroid antibodies and T3 as I dont feel this is being taken seriously. I am happy for a referral to a specialist - depending on the wait I may prefer to pay for a private appointment

My symptoms have been brushed off as a continuation of CFS/FM but I feel they are new and different since my surgical menopause

Is that too waffly?

The point the doctors are missing here is that if your FT4 is in range, that's all well and good, but it's not an active hormone, it's the storage form, so everything hinges on how well it's being converted to T3, and if they don't measure FT3 how will they know??

Is what I've said fair though?

The GP rang me because I had 'conversation' about how let down I felt wu=ith the receptionist yesterday

She refused to accept the previous results being relevant as they are too old
I said I was fed up with being ill with non-specific diagnoses (CGS/FM/IBS)
that I had daily pain
that I move like an old woman
that my joints are unreliable
my sight is unreliable - double vision & floaters and changing prescriptions
my memory is shattered
my cognative ability had taken a huge downturn in the last 2/3 years
my bowels, food intolerances, skin allergies are impossible to deal with
& I am tired, so tired and in pain

So she is going to ask a senior doctor

@KatyMac, we've had discussions in the past under a different username. I thought you had pernicious anaemia or b12 deficiency from another cause? I remember because we talked when I'd just recently been diagnosed myself. If you do, taking supplements won't work, you need b12 jabs.
that's not to say you don't have thyroid issues as well - I have had many thyroid tests over the years with similar results to yours except I hover just under the upper limit. I'm monitored annually because having pernicious anaemia makes it more likely that you will develop Hashimoto's at some point. But getting your b12 sorted has to be tackled too.

I supplement B12 by injections & Vit D by spray

I've long been sub-clinical, symptomatic but the formulary would permit prescribing. So annoying.

It's taken immunotherapy as part of cancer treatment to push my numbers, I should warn you my TSH went to 44 and now they have prescribed.

Keep pushing, but with those numbers I'd be surprised if you get anywhere. Sorry.

@TheFeistyFeminist I am sorry knowing for years something is 'wrong' and being ignored is awful, it's pants that we have to fight for what we need & that even saying "ill pay for it" doesn't help

I fought for B12 for ages, went private and finally took matters into my own hands to deal with it

Same with Vit D (& zinc, iron, magnesium, vit K, methyl folate, ubiquinol etc)

I dont mind doing the research and working it out but something is significantly wrong with me; might be menopause might be thyroid might be a new manifestation of FM/CFS might even be something new. But I struggle to function on a day to day basis, I can barely walk, stand more than a few mins, fall over a lot and am so damn tired

OMG they arr going to trial 3 months of thyroxine!

I am in total shock

I pick it up from the pharmacy this afternoon

This is what they write after my last appt "History: vomplex. in pain since 96, never been listen to. her bloods test esp TFT, asking why no to start on levothyroxine if she has clinical signs. said aged 55 but feels like 70 and always in pain. felt dismissed by her previous GP and now with BL as well. She wants to start treatment despite trying to explain why only on borderline raised TSH in her previous bloods was not started on and said another raised result in TSH should be enough to start treatment and not to repeat in 8-12 weeks. She is very distress on this issue. will discuss with SD"

Fuck, I've seen your posts for about a decade Katy, under different names, those results would make me feel horrific. I'm so glad they've agreed. Tsh 7 would have warranted it in my opinion.

A low dose trial would be definitely worth it, bare in mind that you could swing a bit backwards and forwards at first. You don't really want to be lower than tsh 0.8 at the moment.

The half life of thyroxine is long so it will take 6 weeks to build up but 2-3 months ideally for everything to settle. You may feel a bit buzzy as it hits your system.

If they say after 3 months you're too suppressed (and believe me it isn't good longer term) you could ask to take an adjusted dose of 4-5 25 tablets a week instead. But I think you'd need ongoing monitoring.

Remember quite a lot of this interfere with it - iron, caffeine, magnesium and calcium especially. Take any supplements bar bvits about 4 hrs later

T3 is tricky as it has a very short half life that will be governed by your general metabolism. At the moment it would be better to focus on symptoms. Get good quality protein into you too. Not powders, eggs, chicken breast, veg sources that you can digest.

From 25 years of experience, I'd also suggest brisk walks to get the blood pumping around your body. Even if only 10 mins. It really helps.

Thanks @WarriorN is there anything else I need to know before taking it

I normally take my vits at lunchtime but I can adjust
How long after taking it can I have tea? I do like tea in the morning!

Realistically walking isn't possible but I can go out on my ebike for 30 mins or so

I'm a bit in shock tbh

I sent you a pm, I hope that's ok

Thanks @WarriorN

Well done!

Great news. Hope you start to feel better.

Thanks @DeedIDo & @LittleMonks11

I am definitely in shock!