Hi everyone,I got fed up with having 'normal' test results and T4 & T3 being in good ranges but feeling like crap and having persistent hypo symptoms. So I forked out for some more tests including Blue Horizon Thyroid generic testing. A few things came back in the 'yellow' category, but one red which is CC for the DI02 variant.
Right now my GP thinks things are all fine and they don't need to see me, but I want to go back with this and see if it might help push them to consider a combined therapy trial if possible. I don't have an endo atm, the last one I saw was a diabetes specialist who was no use and now that my GP sees my results as being good he's not been inclined to refer me for anything else (which makes sense tbf). Also I can't afford not to do this on the NHS right now (my work have just made me redundant!)
Have you been through this experience? How did you present your case without getting fobbed off (eg. Told its just getting older / perimenopause etc!)
Any advice on how to sell this new info to my GP to get a referral please do share. 🙏
Thank you!
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Sorry to hear you've been made redundant.....that's tough on top of coping with thyroid disease
Blue Horizon are not the easiest tests to analyse...I had to dig around to make sense of some of the results!
The endo I saw briefly did accept my CC result.....he was pretty hopeless otherwise! But he wasn't convinced that I needed T3....big error, but that's a long story!
I was already self medicating with T3-only before I saw him!
Suggest you use the following links to build your case.
Make a list of all you want to say and ask. I found that focussed my mind, otherwise I would probably have squawked like a demented parrot because my brain was fogged up!
Your results show you have inherited the Dio2 variant from both parents (homozygous) indicated as CC in the report, this suggests T4 to T3 conversion is impaired to a greater degree than if inherited from only one parent (heterozygous)
Our results require replication but suggest that commonly inherited variation in the DIO2 gene is associated both with impaired baseline psychological well-being on T4 and enhanced response to combination T4/T3 therapy, but did not affect serum thyroid hormone levels.
Your GPs understanding is clearly limited! His knowledge is probably limited to TSH and probably poor at that. He should understand that you would benefit from the addition of (a little) T3
Ask to be referred to an endo who should prescribe T4 +T3 medication. GPs cannot prescribe T3.
TUK can provide you with a list of suggested endos.
Use your genetic result, your most recent lab results and very importantly explain all your symptoms that are having a detrimental effect on your quality of life.....there are many
DippyDame Hello, and thank you. Yes being made redundant is crap and it's another thing I really don't need right now, that and looking for new work, but that is life right?! When is there ever a 'good ' time for these things.
Thank you for the general order of what to do next, that is really helpful. The biggest thing for me is proving I'm not loopy. I feel like every time I go to the GP, they just rate me as a hypochondriac, but yes I totally have lots of ongoing symptoms, and finally this has given me a bit more to go on / prove I'm not crazy.
I phoned my doctors this morning, but they have no GP appointments, will have to keep trying. It's so hard getting through. Will see how it goes.
when I took my DIO2 positive gene results to my GP he copied the result onto my NHS file as proof I am a poor converter of T4 levothyroxine to the most important hormone T3. But also importantly he looked at my blood results also showing this. Do you have your TSH, T4 and T3 results to prove you are converting poorly?? This might work out better to request a combination T4+ T3 medication trial. However, GP’s cannot write out a prescription for liothyronine T3, it can only be done by an endocrinologist in NHS England. I got my private trial through a private only endocrinologist. Once that was very successful with some persuasion my NHS Endocrinologist finally agreed to a liothyronine prescription.
Similar experience, I started myself on T3 then did the gene testing whilst waiting to see NHS Endo who didn't have much to say about it but started me on T3 with no mention of 'trial' 😉
TiggerMe Hiya, did you go onto T4 &T3 or just T3 do you mean?
Same question to you, did you find it hard to get through to an NHS endo that would listen and how long did it take for your treatment to move from private to NHS?
I requested an Endo from the TUK list who had previously prescribed T3 and once I had my referral booked in, first available 12 months wait! Then I regularly checked back in until I was able to grab a cancellation so it took 6 months.
At the appointment I filled out the before and after adding T3 questionnaires that they would get you to do when you start a trial with them (as they were ok that I had already completed my trial period) and I was given a prescription for slightly less than I had been taking, which was annoying but got the ball rolling. I have since increased it and they went along with it.... all a bit of a painful system and I'm not a huge fan of Roma but I needed lactose free which Tiromel isn't.
It took another month for the script to actually come through in the post, so I suppose the answer was that they weren't keen but could see I needed it and I think the DIO2 positive helped along with showing Dr Peatfield book I had from the Library as my guide.
I felt I needed to follow this course to prove the need to the NHS... I'm quite happy to self medicate really but we shouldn't be ignored and belittled
Oh wow that is a long time! Oh heck... hard to feel propelled to continue on this with those kind of waiting lists but if I don't do it now, I'll be waiting even longer...
And last (probably most important question!) how has moving from t4 monotherapy to combined changes your quality of life? and was it a slow process again or did it change quite quickly? Of course it might not work for me, I know that, but I have to try
Adding T3 works within hours so you very quickly get your answer assuming your cortisol levels are ok as this can be a factor in how well you respond to it... I used the long wait to justify my self sourcing so no major telling off there 😅
Get the ball rolling and if you feel confident start dabbling, we are all here to help 🤗
I’ve just seen your results, you’ll probably find it hard to get a referral accepted with those levels… madness I know but they really aren’t symptom led.
The trouble with gene test results is that you may have the gene but it doesn’t prove they have been activated they could be dormant I think? Like you say your conversion looks good and they can’t test cell levels ☹️
Any one other than ‘straight forward’ get a rough ride
Although, according to Thyroid UK those with the Dio2 CC result can still show 'good' Thyroid hormone levels as the issue is at a cellular level when it comes to conversion. My GP won't see the above as being in need of any further consideration, which is why I've gone down the gene testing route.
'Because this gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.'
if they were worse, that would be more in my favour I suppose in this case!!
So, presumably by your experience you had to pay to go private then get transferred to NHS for T3, how long did that take, was it hard work to get there in the end?
Separately, I still have what I'd call low iron symptoms - breathlessness, fatigue, hair loss, palpitations, confusion, memory loss brain fog. Oh and my B12 at the min is 521 ng/L [211.0 - 911.0] so GP doesn't think that is the issue either. Low Iron has been an ongoing thing for me for over 2.5 yrs. and I can't seem to shift my ferritin. Currently 38 ug/L [10.0 - 291.0], but I have mid-high Transferrin Saturation Index 31% (12 - 55%), and mid-high Serum Iron Level 20.0 umol/L [9.0 - 30.4] meaning my GP as strongly advised against any further iron supplementation (this is all in my previous chats, but just wanted to add here).
looking at the thyroid figures you seem to be in a good place 👍. Mine are pretty similar. Fortunately for me my TSH almost never goes suppressed but can be on the cusp. I’m on liquid levothyroxine 68mcg a day and 5mcg twice a day of liothyronine. I also get B12 injections every 3 months and I’m on ferris fumerate 210mcg one a day. I’m a vegetarian and struggle to keep my B12 and ferritin good without medication help. Yes, I paid to seek private only help when all failed with the NHS. After my 3 month T3 addition trial which was nothing short of a miracle for myself, it took about another 6 months for the NHS Endo to agree to prescribe it too. That was only after my private only endocrinologist stepping in. My GP was always supportive. It was the hard nosed NHS Endo that was the barrier. He’s since left my hospital thankfully. The only downside I’ve noticed since starting T3 is that my white blood cells are now always abnormally low. I get my bloods checked every 3 months and I noticed this. Looking back over my records there was only one other time my white blood cells was low and that correlated to a time when I was over medicated years ago with levothyroxine for a short period. So I definitely know it’s to do with higher amounts of thyroxine in my system not just T3. I’ve looked it up and people with Graves can have low white blood count. So that fits really. I’m getting colds etc more often and takes a while to shift too. Not sure what to do about it to be honest. I feel absolutely brilliant most days and don’t want to mess about with my thyroid levels. Anyways I’ve gone off piste here. Sorry.
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