Appointment tomorrow : Hi everyone. I have a... - Thyroid UK

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Appointment tomorrow

HypoFrog profile image
20 Replies

Hi everyone.

I have a hospital appointment tomorrow and don’t hold much hope.

Long story short... RAI in 2011. Now hypo and health has got worse over the years. Lots of symptoms. Never get anywhere trying to get a T3 trial. Last hospital appointment in September was a waste of time and was fobbed off with tests for Addisons and magnesium. They also requested a T3 test but the lab didn’t test it so I have no recent T3 test to go off this time which is extremely annoying.

Here are my latest results with any previous results.

- T4 22.3 (was 17.2)

Range (11-23)

- TSH 2.0 (was 2.29)

Range (0.35-5)

- Magnesium

0.8

Range 0.70-1

- Cortisol

291

Range (106-507)

Previous results from September:

- T3 4.1 (Range 3.9-6.8)

- B12 256 (range 200-900)

- Anti thyroid peroxidase abs 165 (<34)

It would’ve been interesting to see if my T3 had increased with my T4 increasing but I can’t because the lab wouldn’t test it due to my T4 and TSH being ‘normal.’

I don’t know what to say to the Endo tomorrow because without the T3 test it’s pretty pointless.

Any advice appreciated as I would really like to just feel 38 now and not 88!

Symptoms below.

Weight gain

Low energy

Muscle and joint pain

Bad TMJ

Brain fog at times

Muscle spasms

Dry skin and hair

Cold intolerance

Anxiety and nervousness

Trembling hands (gets worse with stress, mentally or physically) and sometimes legs

Gut issues

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HypoFrog
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20 Replies
HypoFrog profile image
HypoFrog

Thank you. Erm... I can’t remember if I changed my dose! 🤦🏻‍♀️ I thought about this the other day and I think I’ve forgotten a dose change at some point and gone back to a previous one. Hard to keep track when I’m on split dose. I’m currently taking 100 for 5 days and 75 for 2 days.

Wonder if I’ve wrote doses on previous posts. 🤔😂

SlowDragon profile image
SlowDragonAdministrator in reply toHypoFrog

Always keep good records of dose changes

Get weekly pill dispenser for levothyroxine

Separate pill dispenser for vitamin supplements

Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results

Do you always get same brand of levothyroxine

Which brand

HypoFrog profile image
HypoFrog in reply toSlowDragon

Thanks. I used to be good at remembering. 😕

I have whatever brand they give me which is currently TEVA and has been for a while.

SlowDragon profile image
SlowDragonAdministrator in reply toHypoFrog

Brain not working due to being under medicated

Are you on strictly gluten free diet?

If not this frequently improves brain fog

First step is to get FULL Thyroid and vitamin testing done

What vitamin supplements are you currently taking?

Improving low vitamin levels one at a time

Getting coeliac blood test done BEFORE going strictly gluten free

HypoFrog profile image
HypoFrog in reply toSlowDragon

Thanks.

Currently taking vitamin d high dose as it was low.

SlowDragon profile image
SlowDragonAdministrator in reply toHypoFrog

Are you currently taking any magnesium or vitamin K2 as well?

Both recommended when supplementing vitamin D

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Obviously essential to test Folate and ferritin too

And B12 urgently needs improving

HypoFrog profile image
HypoFrog in reply toSlowDragon

Thank you for all that.

I just take vitamin D 4000 and my last vitamin d test was good but I do need to get a recent test to see if it maybe gone too high.

I don’t take K2 or magnesium currently.

There’s so much stuff to consider, I can’t get my head around it all and it gets overwhelming.

I just don’t know how to get anywhere with the endo tomorrow. I’d really like his support with all this or any endo’s support really. ☹️

SlowDragon profile image
SlowDragonAdministrator

We ALWAYS recommend getting FULL thyroid and vitamin testing done privately BEFORE any consultation

Your high TPO antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Are you on strictly gluten free diet?

What vitamin supplements are you currently taking

B12 was far too low in July

On levothyroxine we need OPTIMAL vitamin levels

Serum B12 at least over 500

Folate and ferritin at least half way through range

Vitamin D at least around 80nmol and around 100nmol maybe better

Low vitamin levels are extremely common with Hashimoto’s

Ask Endocrinologist to test vitamin levels and to retest thyroid levels TSH, Ft4 and Ft3

If not on gluten free diet request Coeliac blood test too

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

HypoFrog profile image
HypoFrog in reply toSlowDragon

Thanks. I will ask for the tests but they asked for T3 last time and the lab didn’t test it.

I’ve had my folate and ferritin before which were not bad but not great.

My vitamin D should be ok as I take it due to being low but I need to get them to test it to monitor it.

I didn’t think the hashimotos mattered as I don’t have a thyroid so there’s nothing to attack. That’s what I was told by the consultant anyway. But I knew the antibodies were high and still wonder why.

I need to sort the B12 but was trying to get a PA test first from the NHS but that probably won’t happen.

I’m not gluten free at the moment, i tried it and it didn’t help with gut symptoms but improved bloating slightly.

HypoFrog profile image
HypoFrog

Just checked and haven’t changed dose so increase in T4 is a little weird maybe?

pennyannie profile image
pennyannie

Hey there again :

Is this at the same hospital as before ?

What area are you in and what CCG are you in ?

I can't say much more than I've already written.

I find it disconcerting that T3 isn't even being tested for an endocrinologist appointment.

You clearly need an endocrinologist who is loyal to his/her profession and not the local restrictions that may have been placed on them from the CCG stating not to start new prescriptions of anything other than T4 - Levothyroxine.

HypoFrog profile image
HypoFrog in reply topennyannie

Hello.

It’s the same hospital but I’ve asked the GP to request the actual specialist this time so I should get to see him. I’m in Preston, Lancashire so Greater Preston CCG I assume.

It is concerning that they didn’t test if even when it was requested by the hospital.

Yes, if I get nowhere tomorrow, I will be trying elsewhere.

Thank you! 😊

pennyannie profile image
pennyannie in reply toHypoFrog

My fingers are crossed again for you : keep us in the loop xxx

HypoFrog profile image
HypoFrog in reply topennyannie

Thank you! I’ll be surprised if I don’t come out in tears again! 😂🤦🏻‍♀️

pennyannie profile image
pennyannie in reply toHypoFrog

Don't hold back on how unwell you feel - cry in the appointment:

I'm so sorry it has come to this :

Around 10 years ago T3 was widely prescribed in the UK when T4 didn't work well for some patients.

It is still widely prescribed outside of the UK as is Natural Desiccated Thyroid which contains a fixed ratio of T3 and T4 in each grain, as are several pharmaceutical brands offering a combination of T3 and T4 thyroid hormone replacement.

Lora7again profile image
Lora7again in reply topennyannie

When I got upset at my Endocrinologist's appointment because he said all my levels were normal and I told him how ill I felt he offered to refer me to see a counselor. I got up and walked out and never went back. I have also done the same when I was begging for help from my GP and he offered me anti-depressants ... it does not always work I'm afraid. They start to think you are depressed instead of ill because of this horrible disease.

pennyannie profile image
pennyannie in reply toLora7again

Yes I know Lora - I was despatched with anti depressants when I first attempted to ask for a dose increase in T4 :

I found the stress of it all exacerbated my symptoms so when refused anything other than T4 - I did a " U " turn and started self medicating and haven't looked back :

Lora7again profile image
Lora7again in reply topennyannie

I even took my husband with me to back me up because I was getting nowhere with my GP. He told the doctor that my hair was dropping out and my nails were lifting off their beds etc. The GP wasn't interested in symptoms just blood results so I was sent home to suffer.

HypoFrog profile image
HypoFrog in reply topennyannie

I was offered medication of my anxiety in the last hospital appointment! It’s crazy and sad that so many have to go through this when it’s really obvious what is needed. ☹️

SlowDragon profile image
SlowDragonAdministrator in reply toHypoFrog

Sending you a virtual hug

Come back with new post once you get FULL Thyroid and vitamin test results

Medichecks currently have 25% off. Sale

medichecks.com/collections/...

You need TSH, Ft4, Ft3, plus vitamin D, folate, ferritin and B12 tested. Test bundle includes TPO and TG thyroid antibodies too.

Once on strictly gluten free diet you may see TPO antibodies slowly dropping over time

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