Overmedicated with suppressed TSH - but low T4/T3 results and on T4/T3 medication

[Louise1610]

Unfortunately I've become the latest victim to a GP and an Endocrinologist beholden to the TSH test.

I've been on 100mcg Levothyroxine (from NHS GP) and 25mcg Tiromel (sourced privately) for a good 6 months now and I've been doing my own private blood tests to check levels along with taking note of how I'm feeling. The GP did a blood test in April this year where the results were:

- TSH: 0.02 mIu/L (range 0.38-5.5)

- T4: 11.4 pmol/L (range 10.0-18.7)

- T3: 4.2 pmol/L (range 3.5-6.5)

I had deliberately stopped my T3 for 3 days before the blood test and just took my T4 as normal (skipped the dose on the morning of the blood test and took it afterwards) as I'd had a colonoscopy a few days prior to the blood test and I thought stopping T3 for a few days might increase my TSH a tiny bit. The GP phoned to say that she wanted to reduce my levothyroxine dose as my results showed that I was taking too much. I said I'm on T3 so regardless of the T4 dose, my TSH will be suppressed. She set about explaining that T4 converts to T3 and by reducing T4 medication, it should bring my TSH up. I said it won't and all it will do is make me feel horrendous. She has emailed the local Endocrinologist who has agreed with her that my Levothyroxine be reduced based on the above results and I frankly believe that the both of them really don't know what they're talking about and must be keeping a lot of their naive patients unwell!

For context, my latest private blood results that I had done a few weeks before the above NHS test with correct timings of T4/T3 before the test were:

- TSH: 0.01 mU/L (range 0.27-4.2)

- T4: 14.6 pmol/L (range 12-22)

- T3: 6.1 pmol/L (range 3.1-6.8)

- TP antibodies: <9 Iu/mL (range <34)

- TG antibodies: 13 Iu/mL (range <115)

From those results and consideration of some ongoing symptoms, I went up to 125 mcg Levothyroxine and stayed on 25mcg Tiromel and I'm due to redo my private blood test next week to check levels.

I also checked my vitamin levels:

- Ferritin: 64 uG/L (range 13-150)

- Folate: >19.8uG/L (range >3.89)

- Active B12: >150 (range 37.5-150)- I'm on vitamin B12 injections (that I do myself every few days as the GP refuses to do them any more frequently than 3 monthly) because of gastric bypass, so this one is a bit useless.

- Vitamin D: 145 nmol/L (range 50-200)

I've been working on my vitamin levels as the majority were so low or deficient about 4/5 years ago.

So now I will need to source some Levothyroxine to make up my full dose as well as Tiromel, which I think I can get from an online FB group where I currently get my Tiromel from, but I would be happy to receive any recommendations via PM of where I could self-source both items from if people get them online directly rather than through a middle-man?

I feel like I'm doing everything I can to be well, but I keep getting push backs from the GP to say 'everything is normal', 'you don't need this/T3' and 'your levels as fine as they are', 'perhaps you are just still depressed'.

Any thoughts on the above or any recommendations for what next?

Thanks!

[SlowDragon Administrator]

You’re absolutely correct and your test results are looking really excellent

GP and endocrinologist are wrong

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3 and don’t have a fit at suppressed TSH

[e-mail]

[Louise1610 in reply to SlowDragon]

Thank you! I felt that I had a little amount of wiggle room to see if I felt any better on 125mcg Levo instead of 100mcg and will see what my blood test result comes back with and go from there! The GP wanted me to go down to 75mcg, to which I said, we will never agree on this so you do what you need to do and I'll do what I need to in order to feel well. She said I was being rude and basically strong-arming her into prescribing it, so I said, just do it so you can save money and I'd just go private for what I need if she didn't want to help. It's taken me forever and a lot of hard work to get my results looking decent and feeling closer to 'normal' than I have in a decade, especially with having had gastric bypass in 2018 and I told the GP I had been doing blood tests for 3/4 years privately but she couldn't care less about seeing them.

I recently got diagnosed with endometriosis so I'm embarking on the research for that as I don't want the usual hormone treatment they offer with that considering I think it negatively affects my thyroid and gives me so many side effects that have eased since coming off hormonal contraception!

I will email them to ask- is it likely that I will need a GP referral? As you can see, my current GP is useless, so would have to request a different GP at my surgery and hope they aren't the same!

[SlowDragon Administrator in reply to Louise1610]

Endometriosis and autoimmune thyroid often go together

academic.oup.com/humrep/art...

kaldascenter.com/blog/endom...

Your antibodies are low now but have you ever had high thyroid antibodies in the past ?

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

GP (technically) can’t refuse a to write a private referral

Roughly where in U.K. are you

Some private endocrinologist are still doing consultations on zoom

[Louise1610 in reply to SlowDragon]

I've never been told that I have autoimmune thyroid or hashimotos. For the first 8 years after being diagnosed as underactive thyroid, I was underdosed on levothyroxine and hadn't spoken to any endocrinologist or had any scans etc. All I was told is, you have UAT, take these, go away. Then take antidepressants for the continuing mood issues, then take mebeverine for the continuing stomach issues etc. It's only when I felt like I'd had enough of feeling like death that I started doing my own research and realised how I'd been mistreated.

Since I've been doing my own blood tests for the last few years, the antibodies have never shown as very high- highest I think I've seen them both is about 18!

I did do saliva cortisol tests about a year ago which showed low (but still 'in the range') results for 3 out of 4 times of the day, but I haven't repeated it since as I've focused on other things and I was hoping that optimising my thyroid and vitamins/minerals would help with resolving my low cortisol anyway.

I'll wait to receive the list and see who they recommend- I think I will be asking to see a different GP at my doctors in future anyway. I'm based in South Yorkshire.

[SlowDragon Administrator in reply to Louise1610]

Cost of ultrasound scan is approx £150

Cortisol levels frequently improve with addition of T3

[guysgrams]

These doctors so don't get it. I have even charted my results over the course of 26 years. When starting T3 along side my T4 (dosed by a former Endo) my TSH went to .01 and has stayed there for over 5 years now. I dread the day I have to go back to ignorant doctors on this subject. Currently with a functional medicine doctor and she understands.

[Louise1610 in reply to guysgrams]

They don't tend to care about anything you do as it's not 'on their system in front of them'. I'm guessing you are feeling pretty good at 0.1 as well?

I did start by going to a functional medicine doctor who specialised in thyroid and prescribed NDT for me (my TSH was low, but no concern!), but it got so expensive over time! I would go back if I needed to though or to another functional practitioner!