Hi all, been having unexplained symptoms for 5 years. A few years back when I developed secondary infertility they diagnosed Hashimotos and I currently take 100 Eltroxin. My symptoms persist in particular periods of fatigue (especially mental), brain fog, headaches and mood issues. I do everything in my power to keep myself well including eat clean, keep stress low and meditate. I recently done the DNA testing which show I have two copies of the DIO2 polymorphism (CC). I feel like this might be n answer for me. However, my issue now is that it has been such an exhausting journey and I have come to believe nothing and question everything. I have had doctors tell me my thyroid was fine, that I’m peri menopausal, that I have ME/CFS. The constant research I do is exhausting. I feel like ordering another DNA test just to verify what that one has showed me because I don’t know who or what to trust. The endo told me there was no need to order that test. I guess I just feel so depleted. I also recently discovered that I am iron deficient based on ferritin but again I feel like doctors will laugh at me, off out ‘doing my own research’, I sense the condescending tones in the appointments I attend with my folder of blood results in tow! I don’t know fully what DIO2 means as there isn’t a lot of info on it really - is it confirmed that you will definitely be hypothyroid in brain tissue when on T4 or just that you may be? I am scared to go onto T3 in case I get palpitations. I am also due to go for fertility treatment soon i apparently I can’t take T3 when pregnant anyway. I am just lost and exhausted. It doesn’t help that I feel like I can’t think straight anymore.
Feeling deflated and alone trying to get sympto... - Thyroid UK
Feeling deflated and alone trying to get symptom resolution. DIO2 polymorphism x 2
welcome to the forum
How long have you been on 100mcg levothyroxine
Can you add most recent thyroid and vitamin results and ranges
TSH, Ft4 and Ft3, vitamin D, folate, B12 and ferritin
Exactly what vitamin supplements are you taking
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Hashimoto’s - have you had coeliac blood test done
Or are you already on strictly gluten free diet and/or dairy free diet
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/testing/priva...
Randox FULL thyroid test including both thyroid antibodies just £29
Test at home or in clinic
randoxhealth.com/en-GB/at-h...
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last serum B12 below 500 or active B12 below 70
First steps are to get Levo dose fine tuned
All four vitamins at GOOD levels
Trial gluten free/dairy free
If Ft3 remains low ……..Lots of members have successfully got T3 prescribed after demonstrating Ft3 remains low once Ft4 and vitamin levels are optimal
Some have also been able to back this up with DNA Dio2 results
We do have members who have been taking T3 alongside levothyroxine during pregnancy
Getting thyroid levels CORRECT could also mean able to conceive naturally
I too have the Dio2 polymorphism/snp with CC alleles which means one copy inherited from each patient (homozygous)
The Dio2 snp indicates poor conversion of T4 to T3 this has greater impact if inherited from both parents ( as you and I have found!)
I don’t know fully what DIO2 means as there isn’t a lot of info on it really
There is adequate information on Dio2 you need to look in the right places
If you want to help yourself you need to learn about the deiodinases
thyroidpatients.ca/2018/07/...
If conversion is poor our T3/FT3 level is low ( the level can vary from person to person)
If FT3 level is low we suffer from symptoms of hypothyroidism
In my case I also suffer from a form of Thyroid Hormone Resistance which means it is difficult to get the T3 into the cells
For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply.
Low cellular T3 results in poor health.
I have been diagnosed with Fibromyalgia and CFS/ ME...most of my symptoms resolved when my T3 dose became adequate.
I agree researching the condition is exhausting.....it took me decades to reveal my problem, medics were not helpful and I now self medicate....and have done so for 8+years.
My bio might help you
healthunlocked.com/user/Dip...
Some more reading !!
paulrobinsonthyroid.com/dio...
*********
frontiersin.org/journals/en...
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
"""""""""""
academic.oup.com/jcem/artic...
Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients
Vijay Panicker, Ponnusamy Saravanan, Bijay Vaidya, Jonathan Evans, Andrew T. Hattersley, Timothy M. Frayling, Colin M. Dayan
*******
It sounds as if you are experiencing information overload....and not all the information is reliable.
is it confirmed that you will definitely be hypothyroid in brain tissue when on T4 or just that you may be?
Not how I would put!
The brain needs a lot of T3 and if supply is low we can experience cognitive issues like brain fog. This can be improved by the addition of a little T3 ( or in my case by a lot!)
I had to do my own research, one GP thought by taking a lot of T3 I could kill myself...a bit extreme but in a sense true if my body didn't need it
I was confident that my research was from reliable sources so continued the path I believed to be correct for me....it's a long complicated issue and you have to work through the symptoms and issues involved and in a logical order, focus on those that apply
I pointed to Patient Autonomy....as described here...
bma.org.uk/advice-and-suppo...
I wrote a document explaining my reasons for self medication which is in my notes....and read by our GPs. They now leave me in charge of my thyroid treatment, which is working. I would rather be treated with the safety net of the NHS....but that wasn't going to happen
I suggest you read the following ebook available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton
It is easy to read and is well referenced.
I feel like doctors will laugh at me, off out ‘doing my own research’, I sense the condescending tones in the appointments I attend with my folder of blood results in tow!
Doctors should listen to your concerns ....not laugh at you!!
I think you need to sort out which factors are relevant to you, make a list of the points that relate to you and calmly explain your concerns and solutions as you see them....all with verification
Decisions about treatment are supposed to be made jointly with patient and doctor....the doctor should not dictate.
Doctors are flawed human beings like the rest of us and it is not a given that they are always right....in relation to thyroid disease they are very often wrong!!
Hope some of this helps you think straight again.....start with that list it should help you focus on what is important.
Keep us posted, we're all here to help.
Good luck!
I also recently discovered that I am iron deficient based on ferritin
Have you got the results and reference ranges of an iron panel? Do you have results for a ferritin test? If you live in the UK and your doctor won't do an iron panel for you, and if you can afford it, you can do a fingerprick test of an iron panel :
thyroiduk.org/testing/priva...
medichecks.com/products/iro...
There might be 20% off the cost of an iron blood test at the moment because of the New Year, but if there is no reduction there is a 10% discount code available on that first link which is valid all year round when Medichecks aren't having sales (i.e. you can't combine discount codes).
I had very low iron and ferritin some years ago. I ended up fixing it myself. If a doctor was going to treat an iron deficiency there are only a few things they would prescribe - they are
ferrous fumarate
ferrous sulfate
ferrous gluconate
I fixed my iron with ferrous fumarate 210mg which at the time came in boxes of 84 and cost less than £10 a box, which I bought without prescription from pharmacies in the UK. You need a pharmacist's permission to buy, but if you get refused just go to another pharmacy and try again. (I was only ever refused once.)
One of the things that is a problem with iron is that poor absorption is common. I took maximum dose of iron for nearly 2 years before my ferritin reached mid-range. I was testing with an iron panel fairly frequently and my serum iron was staying extremely low. So I just maintained my ferritin where it was and kept tabs on the other iron-related levels. I took a maintenance dose for my ferritin for five years before my serum iron started to rise.
This might sound very depressing, but there is good news. People on the forum have discovered that they improve their iron and ferritin much more easily with haem/heme supplements called Three Arrows. (The ones I mentioned above are "iron salts")Haem supplements are currently only available by importing from the US.
For more info :
healthunlocked.com/thyroidu...
threearrowsnutra.com/en-uk/...
It is important to realise when trying to raise iron and ferritin that when supplementing to improve these with any kind of iron or haem supplement that one of them may shoot up while leaving the other very low. Ferritin shooting up while serum iron stays low is the most common, but it can also happen that ferritin stays low while serum iron shoots up. Neither of these is desirable. If either of these happens you should create a new thread, give your latest results and reference ranges, and ask for help.
Good luck.
Thank you but I thought with DIO2 that Free T4 and Free T3 would be normal and the issue is activation within the cell or something? My Free T3 is usually mid-range. TSH is staying between 1-1.8.
I take Eltroxin first thing we’ll before any food or other supplements, and I know how to test properly in the morning before meds.
I was upped to 100mg earlier in the year and I honestly think it’s made me worse, mentally anyway.
Dec:
Iron: 11.5 (Ref 9-30)
TSAT: 15% (Ref 10-50)
B12: 359 (Ref 139-651)
Folic Acid: 17.1 (Ref 7-46.4)
Sept:
Active B12: 96pmol (Ref 25-165)
B12: 422 (Ref 139-651)
Iron: 18.5 (Ref 9-30)
TSAT: 27.5% (Ref 10-50)
June
Iron: 21.8 (Ref 9-30)
TSAT: 27.8% (Ref 10-50)
Ferritin: 26 (Ref 5-205)
Vitamin D: 78 (Ref 50-9999)
B12: 381 (Ref 139-651)
Seems to me like Iron is steadily falling and ferritin hasn’t been checked in a while.
I have had lots of testing done and I read a lot. I eat gluten free, dairy free and egg white free. Mum is Coeliac and I’ve been fully tested for it (scope etc.), I don’t have it.
My issue really now is that I cannot wrap my head around the disconnect between what doctors say and what people online say. How do I know what the truth is? The last endo told me to watch out about reading stuff online and just follow the BTF. I am educated and I don’t believe everything I read, I look for evidence and studies. But I feel now like they are not even going to take the DIO2 testing seriously. I don’t know what advice to trust and I’m sick of doctors being so condescending. I’m starting to question myself.
Is the DIO2 a solid thing? Like genetics can create risk but outcomes are not set in stone because you have a genetic risk, but is DIO2 different as in does it always result in impaired tissue hormone when on T4?
I am in Ireland.
You haven't posted thyroid hormone results here.......FT4 and FT3
For thyroid evaluation these are essential
FT3 is the most important result followed by FT4
See SlowDragon's replies above.
I thought with DIO2 that Free T4 and Free T3 would be normal and the issue is activation within the cell or something
"...or something indeed!"
This response suggests that you do not understand Dio2...reading up on that would help. See my reply above.
When T3 enters the cells it must reach the nuclei. It is still inactive up to this point and must become attached to T3 receptors before it becomes active
Dio2 is not involved in this process.....you are comparing apples with pears!
No! the Dio2 snp does not always result in poor conversion and the rate of conversion is variable See link I posted above.
Trying to balancing T3 and T4 
DIO2 faulty gene
Trying to get better but desperate
DIO2 Endocrinologist Recommendations
Splitting my T3 dose before a blood test is not agreeing with me!
