Hello, I am suffering greatly with all hypothyroid symptoms to the point now I am bed bound and at best housebound. I'm sick 24/7. I've had many tests and I am hypothyroid and taking just 25 mcg of levothyroxine. My bloods are generally "within range" however I was recently advised to take the DIO2 test and it came back double positive - so I have inherited the faulty gene from both parents and this can stop someone benefiting from levo and research has shown a combination of T4/T3 has great benefit to those with this genetic fault.
there’s no point considering Dio2 until you are on a high enough dose levothyroxine
Approx how old are you….and Approx weight in kilo
At the moment you aren’t taking any where near high enough dose levothyroxine (Ft4) so Ft4 will be too low …..so there’s no where near high enough level of thyroid hormones to convert….
Having Dio2 means we frequently need addition of T3 alongside levothyroxine……..but first step is to get on to higher dose levothyroxine
Highly likely your vitamin levels are terrible as been left on inadequate dose levothyroxine. Being hypothyroid results in low stomach acid, and poor nutrient absorption as direct result
All thyroid hormones require optimal vitamin levels
you sound very knowledgeable and I have to say you sound very accurate I always feel undernourished. I have awful bowel trouble and fatigue everyday that makes me housebound. I cant walk for 5 mins.
My GP just said no to the NICE 1.6x1kg guide and said they base on blood tests only.
I am 43 and have suffered since I was 37. I am 86kg approx.
I will dig out my test results and send them to you.
25 years ago…..pre this forum ….I was left severely under medicated on just 75mcg levothyroxine for first 5 years…..by then pretty much bed bound or in wheelchair
Gaslit and denied treatment until got my request/insistence on 2nd opinion thyroid specialist endocrinologist …more on my profile
With serum B12 result below 500, (Or active B12 below 70) recommended to start taking a separate B12 supplement and add a separate vitamin B Complex a week later
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
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 until up high enough
Post discussing how biotin can affect test results
I have no idea why such a low dose. It was what I was prescribed 2 years ago and that's it.
What were your results BEFORE starting on levothyroxine
What were results 6-8 weeks after starting on 25mcg levothyroxine
Unless over 65 years old, or frail, or with heart condition you should have been started on at least 50mcg levothyroxine and dose increased as fast as tolerated
Many members test positive for Dio2. Usually as heterozygous (inherited from one parent)
Homozygous is rarer
You are likely to need addition of T3 ……but getting levothyroxine dose higher and all vitamins optimal first
If you have autoimmune thyroid disease (hashimoto’s) you need coeliac blood test BEFORE considering trial on strictly gluten free diet
But it’s important to only change one thing at a time
Most important is going to be getting levothyroxine dose increased
they didnt do tests 6-8 weeks after. I requested them 1 year after!
So am I homozygous?
Hashimotos has always come back negative or within range.
I have a GP call tomorrow. Do you suggest I ask for an increase of levo to 50 or 75 mcg? or more? And do you think I should ask for a referral to an endo?
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
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
All members are just thyroid patients, many of whom have often had long difficult thyroid journey to get correct treatment
There’s an over reliance on TSH to extreme detriment of thousands of patients
Approx 2 million in U.K. on replacement thyroid hormones ……..so this is not a rare disease, but rare to find knowledgeable GP when TSH does not reflect the poor levels of thyroid hormones and obvious hypothyroid symptoms…..computer says “no” syndrome
Patients who get diagnosed with TSH up nearer 100 often make easier progress through dealing with medics ….as it’s clear that they need dose increases in levothyroxine
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Which brand of levothyroxine are you currently taking
What vitamin supplements
If you can’t get full testing via GP test privately
List of private testing options and money off codes
Your FT4 is just 48% through the reference range and your FT3 is only 32.43% through the reference range.
You are going to need to increase your Levo first to try to get your result into the top third of the reference range and see if that helps your FT3 to rise before you add in T3. So you might need to see a different GP. Is there a choice at your surgery?
What brand of Levothyroxine are you taking? Some on the forum can't tolerate certain ones due to the fillers often causing digestive upset such as loose bowels and bloating.
I was only prescribed Levo after a partial thyroidectomy. I struggled to tolerate Wockhardt so had to change to a different brand. That then resolved my digestive issues.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
ok thanks very much for the comprehensive information. I will ask for a change of brand and an increase dose. I will also ask for a referral to an endo .
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I always feel undernourished. I have awful bowel trouble and fatigue everyday that makes me housebound. I cant walk for 5 mins. 
DIO2 (Deiodinase 2 Gene) Genetic Test
Looking for a good doctor/specialist in The Netherlands for hypothyroidism
