Like many people on this forum I'm having problems accessing the help I need to feel well and manage my condition. I was diagnosed with Hashimotos 20 years ago but despite taking levo I have not seen any improvement in my symptoms.
I have had SAD depression since adolescence so I put my symptoms down to this.
I've spent thousands on counselling over the years as well as alternative therapies, supplements and most recently a nutritionist.
The nutritionist has been helpful about my condition and pointed me in the direction of Thyroid UK. She advised me to ask my gp about NDT and t3 as well as going gluten free.
My GP refuses to refer me to see an Endocrinologist despite my ongoing issues. There is a huge prevalence of Hashimotos in my family (mother, grandmother, sister, aunties, uncle) as well as other autoimmune conditions including MS.
Has anyone had a DI02 test done privately and could recommend a service?
Any other advice would be very welcome.
Many thanks
Written by
ltimmsie1
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
You may in time want to get genetic testing but before you go down that route we need to look at blood results for both thyroid and vitamin levels.
Many people are being under replaced and part and parcel of being hypo are gut absoption issues which cause low vitamin levels. This means your thyroid hormone wont work well.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Do you do tests as per the protocol recommended here?
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Hi there, I had a full thyroid test completed by Medichecks in August as my gp would not do it. I showed this test result to my gp and they did a thyroid test to confirm my tsh levels were increased. My levo dosage had been increased in June from 100mg to 150mg because my results were low.
My full thyroid test results:-
CRP HS is 0.199
Ferritin 103
Vitamin D 158
Vitamin B12 is 121
Folate came back as sample error
TSH 0.247
Free T3 3.7
Free thyroxine 27.5
I take my thyroxine at 8am every morning. I practice intermittent fasting so eat breakfast around 11 am. I use accord branded levo.
Would my GP accept the results of this test? If as I suspect I require T3 my GP has told me that only an endocrinologist would be able to prescribe it. I'm at an impasse because my GP won't refer me and without specialist testing I cannot get to the bottom of why I feel so unwell.
Your GP is very unlikely to have a clue about gene testing, I did present it to the NHS Endo at my first appointment but I'm not too sure she understood what it meant 🤷♀️
Your GP very obviously hasn't got a clue with results like this...
Free T4 (fT4) 27.5 pmol/L (12 - 22) 155.0%
Free T3 (fT3) 3.7 pmol/L (3.1 - 6.8) 16.2%
T4:T3 Ratio 7.432
You really need to reduce your levothyroxine to get it back within range as it further impairs conversion and above range fT4 is known to be bad for your health!
How on earth can the GP refuse to refer you with results like these?? I'm assuming you have shared them with your GP?
I suggest you take a look at the list to see if there is a T3 aware Endo in your area and insist on a referral to a named Endo
I live in Cardiff and there is only one endocrinologist who is on the list. He has availability in his private clinic on 18th November. He has previously prescribed T3/T4 combination therapy. Wondering if I should just pay privately rather than having to battle with my GP again.
Can I just but in and ask about this please? If we take this test will the results be explained well withbadvice in how to overcome the problems please? It all looks very interesting & useful or would it be a matter of finding an expert who can interpret/treat results? Many thanks TiggerMe
It does come with a good report but the thing with genetic testing is that it isn't conclusive, you might be pre-disposed to certain traits but it doesn't necessarily mean that gene is active or hasn't turned rogue due to stress etc
There is a great book called "Dirty Genes" by Ben Lynch
Thanks TiggerMe, appreciate it isn't conclusive thanks, guess there's a long way to go in the gene world, so when folk talk of the d102 test that's also a gene test is it? Dare I ask what turns rogue means? Thanks for book rec.
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If it’s the endo I can see, he or she is also on the nhs list. ☺️
I took the test privately which showed I have the mutation. It explained why I never felt right on levothyroxine alone, although my TSH and T4 levels were in their normal ranges, and why I needed liothyronine to feel well. I buy the liothyronine privately. Roseway Labs are well regarded but so far I have used other sources. I test my levels through Monitor My Health and as it is an NHS laboratory my GP accepts their methodologies.
I did the Dio2 gene test. I have one set of dodgy genes (sure it would be my Mam!😂) I had a phone consult before I could download my results. I took a copy to my GP so they could download it into my medical record, she asked me what it meant!😂😱
I'm beyond frustrated with my GP. I've requested numerous times to be referred to an endocrinologist but they refuse. They keep palming me with off with antidepressant medication. The latest ones made me feel so awful and unlike myself that I worried I would end life. From now on I'm refusing any more antidepressant medication and I'm taking charge of my own health. I've since made an appointment with a private endocrinologist who has an NHS clinic. I will be putting my case to him that for 25 years I've been experiencing hypo symptoms despite taking levo and "normal" blood tests and on the advice my GP taking various antidepressants when all I most likely need is T blooming 3!!!!
I wish you all the luck in the world. I tried some T3 from Turkey first, someone then told me about Roseway Labs, did a phone consult with their prescribing pharmacist and I’ve been on Thybon Henning since July 2023. Look after my own bloods privately (usually Medichecks or MMH) Not any easy journey when you’ve got a dodgy thyroid (or no thyroid come to that) Good luck 🤞 x
Thank you Auders. I hope you've found the right balance for your health. It shouldn't be this much of a struggle to obtain the medication we need to be well.
Totally agree, it shouldn’t be so hard but unfortunately it is, and can be very expensive too. I’m more than happy with Roseway plus the price is very good too.
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