Update on chasing a diagnosis

[LabradorFan22]

Hi Team, I thought I’d post an update since my last post as I’ve found out a bit more. Essentially my GP agreed to a 6 month follow up blood test last Summer due to my TSH being at the top of their healthy range. I’ve got the GP results today.

Just prior the GP retest I did some private testing as I wanted to know a bit more as the GP is only testing TSH and T4.

Jan 2025 Randox

TSH 5.7mIU/l (0.35 - 5.5) 103.9%

FT4 12.1pmol/l (11.91 - 21.6) 2%

FT3 4.39pmol/l (3.11 - 6.8) 33.9%

T4:T3 Ratio 2.775

Anti-TPO 16.2 <= 34

Anti-Tg 16.1 <= 115

Feb 2025 Medichecks

TSH 4.96mIU/l (0.27- 4.2) 119.3%

FT4 10.9pmol/l (12 - 22) -11%

FT3 4.8pmol/l (3.1 - 6.8) 45.9%

T4:T3 Ratio 2.271

Anti-TPO 17.3 <= 34

Anti-Tg 15.3 <= 115

Folate 13nmol/L (> 7)

Active B12 85.3pmol/L (>37.5)

Vit D 70 (50 - 250) I keep forgetting to take my supplement

Ferritin 379ug/L (30 - 518)

Iron 29umol/L (10 - 30)

Total cholesterol 7.57 (<5)

LDL 5.19 (<3)

HDL 1.41 (>1)

Triglycerides 2.14 (<2.3)

24 Feb 2025 GP

TSH 5.53mIU/l (0.38 - 5.3) 104.7%

FT4 9.5pmol/l (7.7 - 15.1) 24.3%

This is the first time I’ve had a GP TSH test above range so I was expecting another test in 6-8 weeks maybe to see if I’m still above range. However the GP’s comment on my result was to retest in a years time as it’s only just over range. No big surprise there, I was half expecting that. That was a text from the GP and I know I could book an appointment and plead my case armed with the guidelines etc but I’ve lost any faith in them to manage this.

Other findings

I also tried some gene testing which showed I have PDE8B which the report said is linked to lower production levels of T4 and T3.

I also convinced my mum (70yr) to get tested also she’s talked about similar symptoms in the past. Her Medichecks results were:

TSH 5.06mIU/l (0.27- 4.2) 121.9%

FT4 13pmol/l (12 - 22) 10%

FT3 4.2pmol/l (3.1 - 6.8) 29.7%

What surprised me is it’s not auto immune as that’s what I’ve seen most often. I get the impression my GP is just fobbing me off to wait and see if it gets worse, which is understandable. But now I know it’s not auto immune I’m guessing that probably won’t be the case. As my results are similar to my mums I’m now thinking it’s genetics and we’re just low producers of T4/T3 which results in a mildly elevated TSH and that’s the norm for us. My mum has never had any diagnosis or thyroid medication. She was tested many years ago but told she was “Within range” and not given any numbers.

As my GP is not going to be of any help anytime soon I’m going to try the self medicated route for a bit see how that affects my symptoms and cholesterol. I’ve raised a separate post for this.

[Regenallotment Ambassador]

hello, sorry your message appears not to have been picked up for some days. Hopefully my reply will push it back up to the top.

Good work so far, you will have to continue advocating for yourself sadly.

NICE guidelines say 2 tests over range 12 weeks apart for NHS diagnosis. Push GP to test sooner. Your private tests show your TSH isn’t jumping around, it’s high.

I have found my GP does listen when I mention NICE, they will bring it up on the screen during the appointment and discuss it.

Caution in self treatment in the mean time - GP will be lost on how to help if your levels improve with prescription meds and no prescription (unless you see a private endo of course).

You and your Mum’s low FT4 will make you feel dreadful. It’s amazing what we put up with and end up thinking is ‘normal’. Take care to rest and eat well

🤗

[Buddy195 Administrator]

Hi Labrador Fan… from another Lab Fan (Buddy is my chocolate boy!)

Sorry your post seems to have gone unanswered

Just a patient to patient tip about your next blood test at GP …..go for earliest possible draw (before 9am when TSH at highest) and drink nothing but water before the test.

[lynmynott Partner Thyroid UK]

Hi LabradorFan22,

I just wanted to say that if you want to send me an email, I can comment on this and send you some guidance documents which I think might help. My email is [e-mail]