Feeling a bit down about my thyroid/meds

[KatyMac]

Diagnosed in October 2023 with subclinical hypothyroidism started on 25 levothyroxine

Went up to 50 in Feb, had bad side effects so changed to another brand

Inbthe summer I saw the gp and said I didn't feel much better and they write to the hospital who said well if she isn't any better come off the levothyroxine- the gp didn't feel that would help so I stayed on 50

Stayed there until September when my results showed over medicated

Then in December they were undermedicated So they upped me to 62.5

8 weeks later still under medicated & waiting to see what the GP says

But I'm just so cold and tired and fed up with it all

Will it ever level out or will it be swings and roundabouts forever

Have you had iron and B12 checked? Are you peri age?

Im on HRT (medical menopause)

B12 is always good I supplement aggressively i'll check my iron in airmid

Is this it
Haemoglobin A1c level - IFCC standardised 38 mmol/mol [20.0 - 41.0]

Tbh I have never felt as I used to pre hypothyroidism, even when over treated.

Can I just check, you aren’t taking it with multivitamins containing iron are you? Iron affects absorption. As does drinking coffee within 30 mins of taking it, and it must be taken on an empty stomach.

Did they check ferritin, Vit D, B12 & folate also? Those deficiencies seem to go hand in hand with hypothyroidism, I’m on treatment for all of them and have been for years. My levels just rank when I’m off treatment. You need to be the higher range of normal, not just the lower ranges. B12 ranges have also been increased recently too as they recognise levels set in the U.K. are far too low.

You could ask for a referral to endocrinology. I’m prescribed liothyronine as well as thyroxine as I literally can’t get off the sofa on thyroxine alone.

No op, it’s ferritin you need. The HBA1C is a diabetic blood test

Have you seen a consultant yet. The GPs often don;t know enough about thyroid health to make good decisions. If you haven't been sent yet ask to be sent. It took years for me to realise that, the consultant was so annoyed he sent a letter of complaint to the GP for leaving it so long.

It’s actually not standard to see a consultant though.

No, I wasn’t sent to a consultant, and either were others I know.

found it - its old 2021

Serum ferritin level 194 ng/mL; Female Ferritin Reference Range
17-60 years: 13-150 ng/mL

D is fine

I take iron 3 days a week about 6 hours after my levo

folate is from Jan
Serum folate level 6.3 ug/L; Please note change in the reference range for Folate
effective from 08/10/2018.
<3 ug/L suggestive of folate deficiency.
Please note there has been a change to the folate
reference interval in accordance with clinical
guidance from the British Society of Haematology.

@IUnderstandTheWeird and @DustyLee123

It could be your health authority or it could be like my GPs they were terrified of the endo and didn't want to send anyone to him in case they got told off, 2 doctors told me the latter. The endo was lovely to the patients but not GPs.

But I understand you are supposed to see one and if they don't send you to ask to see your one, particularly if you are struggling with symptoms and meds. Consultants do more indepth tests.

When the GP wrote to the consultant I got this

& all our local endos are diabetes specialists

Sorry that's blurry

I got the gist of the text. Seems odd since your symptoms are still present that the consultant thinks you are being adequately treated.

Could there be something else underlying it? I know now you have a disagnosis everthing will be blamed on that but you are sick and tired of being sick and tired and it's not always down to your thyroid.

I would definitely ask them to check your 8am cortisol.

When I was first diagnosed I seemed to swing wildly over and under. I eventually got the dose right, but it's really specific. My consultant said not to take multivitamins or iron, but if I really needed to (I sometimes get anemic) to take them 12 hours apart. (Levo at 7am iron at 7pm). I also always stick to the same brand, take them on an empty stomach, and wait at least half an hour hour after taking them before food or caffeine.

Serum cortisol level 376 nmol/L [133.0 - 537.0]; The cortisol reference interval is for a 9am
sample. A 9am cortisol >320 nmol/L makes adrenal
insufficiency unlikely but may not be sufficient in
severe illness. Values <320 nmol/L should be
interpreted in light of the pre-test probability
for hypoadrenalism.

That's july last year and it's closer to 8am than 9am

I mean it could be anything else, I collect diagnoses like some people collect shoes - ME/CFS, FM,HM, IBS been ill since 1996

I do get slightly better when my dose increases butbindrop again

I am having similar health issues for the last year , gp’ s follow nhs guidelines but it feels to me like these aren’t always accurate in Underactive thyroid cases ?
I’ve got some helpful advice on the health unlocked web site, where people have loads of experience and advice , I’m still struggling but there’s a chance their advice is more help than your gp , for example improving vitamin levels beyond nhs levels because of issues with absorption, and taking vitamins in formats that are more easily absorbed so d3 with k2 ?
im no expert but I’ve learned a lot this year and now the next appointment I have with my gp I’m being accompanied by the well-being advisor as I’m sick of being fobbed off

I feel no different at all and I'm on 100mcg

They put me on it after years of me saying all the females in my family had deranged thyroid results, when my TSH tipped over to 8 they finally put me on it

I accidentally ended up in immunology instead of dermatology (don't ask), they looked like they were having a quiet day and started asking about my autoimmune stuff and doing bloods, that's when they found the anti thyroid antibodies

My TSH is around 2 now and I feel exactly the same

My gp has had me on 100mcg since June with no real change, I weigh a stone and a half more than I did and struggle with constipation, gp’s last idea was to treat me for ibs c with citrilopram , thus increasing my weight more ?
I really recommend the ‘ health unlocked ‘ website

I am using healthunlocked and learning

I was just feeling so miserable this evening after another odd blood test & mn can be so supportive

I understand, feeling pretty miserable too , my Tsh was very low last time I was tested , 0.358 and I still feel rubbish and I doubt my gp will let me stay on this dose but she’s not interested in t3 so I’m stuck , sorry you feel rubbish

Selenium might be helpful

Mine is 6.29

It was low in Sept, but id just taken my levo when they threw a blood test at me while I was there for something else

& of course hypo give you anxiety/depression

Sympathies @Wishiwas24again

I was diagnosed about 15 years ago and I also found that my levels were all over the place for a while but seem more stable now (I’m 50). I’ve been on 125mg for a few years as my thyroid is basically moribund! I do sympathize, I used to feel so cold too. You’ll get there eventually, OP, hang in there. 💐

I’m sorry that your gp thinks that Tsh is ok , I’m getting more and more fraustrated , you really have my sympathies xx💐