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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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.
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
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.
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.
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.
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.
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.
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 :
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.
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. ☹️
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