I’m here really looking for some advice - this forum has been an absolute life saver for me, helping me get diagnosed and get to a place of feeling really good for the first time in years (thank you those that have helped!).
I’m here this time because of a relative who has really struggled for years. Mainly with symptoms of depression and anxiety that have been increasing, which I think is being made worse partly down to the poor treatment he is receiving from doctors. He also suffers many symptoms that sound very familiar to how I was feeling before I was treated - extreme feeling of exhaustion all of the time (so much so it’s now affecting his ability to leave the house some days) But struggling to sleep at night, very low blood pressure (to the point that he regularly feels light headed with it and has passed out with it - the doctor purely told him to eat more salt but I worry about the amount he is already having which is a lot more than normal). He struggles with feeling cold all of the time but then wakes up with night sweats and talks about a constant feeling of brain fog. His depression and anxiety have been increasing and are at the point of taking over his life and I’m worried really worried about what will happen if we don’t find an answer to this. He is also suffering constant nausea now too but I think personally this is down to his treatment by doctors.
He has spent years being trialled on different types of anti depressants which I believe is making him worse - from what I understand they are difficult drugs to start taking with many side effects on initially taking them, then even worse side effects when coming off them (and if they aren’t working then to me that points to the chemical imbalance they are trying to treat with them not being there surely!?). The problem being he has faced years of this awful cycle of trying new anti depressant drugs, each time making him feel worse. They GP is now talking about anti psychotic drugs (I know I’m not a doctor but this really worries me because from what I’ve read these are big drugs, not normally used to treat anxiety and depression!).
I really feel like there’s more to this, and even he will say he feels depressed because he feels so unwell. The doctor just keeps telling him he feels unwell because he’s depressed. I feel helpless and guilty because I feel so well!
I have asked my endocrinologist to see him and we’ve arranged a full set of thyroid and cortisol tests, I really want to rule out any physical causes for this before the doctors make him more sick with powerful drugs which I strongly believe have made him worse (he is currently in the process of weaning off one anti depressant medication at the same time as starting another one - no wonder he feels so bad!).
I have the below results from a few months ago, they were taken in the afternoon so I have stressed he needs to take the next set early in the morning. They don’t look too remarkable but I don’t really understand this stuff too well.. his vitamin d is low so I’ve asked him to start with supplements for that. His T4 also looks very low in range but then fT4 is midway through the range.. I’m not sure of the significance of that. Any suggestions?
Active B12 - 52.6 (25.1-165)
Ferritin - 106 (30-400)
Folate - 17.5 (8.83-60.6)
Vitamin D - 39.3 (50-200)
TSH - 1.82 (0.27-4.3)
FT4 - 16.6 (12-23)
FT3 - 5.65 (3.1-6.8)
Anti Thyroidperoxidase antibodies - 9 (<34)
TGAB antibodies - 10 (<115)
Thyroxine (T4) - 75.5 (66-181)
As always, thank you for any advice you can give. We really are very concerned about him.
Written by
Birdy123
To view profiles and participate in discussions please or .
This looks like a Medichecks Thyroid ULTRAVIT test or maybe a Blue HoriZON PLUS ELEVEN, I would repeat this as it's now a few months old but comments on those results are:
Active B12 - 52.6 (25.1-165)
This is low. Active B12 below 70 suggests testing for B12 deficiency - see
He should list any that he has and request further testing for B12 deficiency/Pernicious Anaemia.
He shouldn't supplement with B12 or B Complex before these further investigations.
I think he may be started on B12 injections or B12 supplement, if so then a B Complex is needed to balance all the B vitamins which shouldn't be started until after the B12 injections or supplement (the B Complex wont be prescribed so look at Thorne Basic B or Igennus Super B).
Folate - 17.5 (8.83-60.6)
This is low in range and folate is recommended to be at least half way through range. The B Complex will take care of this.
Ferritin - 106 (30-400)
Ferritin should be half way through range. He can help raise his level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).
To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 4,900iu D3 daily (nearest is 5,000iu)
My suggestion would be an oil based D3 softgel as this gives good absorption, avoid tablets and capsules. Doctors Best is a very good brand at a reasonable price and contains just 2 ingreients - D3 and extra virgin olive oil. There are D3 oral sprays but these contain unnecessary added extras which may not be a good idea as he already takes other medication, I'd keep supplements as "clean" as possible.
When he has reached the recommended level then he'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. He can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.
Healthy Origins do an oil based K2-MK7 softgel which has very few ingredients.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
Anti Thyroidperoxidase antibodies - 9 (<34)
TGAB antibodies - 10 (<115)
These aren't indicating autoimmune thyroid disease.
TSH - 1.82 (0.27-4.3)
FT4 - 16.6 (12-23)
FT3 - 5.65 (3.1-6.8)
Thyroxine (T4) - 75.5 (66-181)
I agree that the Total T4 is low yet it seems to be producing a reasonable amount of Free T3. But of course, there is a circadian rhythm for each of the hormones so at the moment I wouldn't put any store by that.
A normal healthy person would have TSH no more than 2 with FT4 around mid-range +. His TSH is OK with that test but would probably have been higher if the test had been done at 9am. His FT4 is 46% through range and making a decent amount of FT3.
I would wait and see what a new test shows - no later than 9am after fasting since evening meal/supper the night before, and drinking water only until after the test.
SeasideSusie, you’re a star - thank you so much. We’ve ordered a range of tests this time covering the full thyroid panel and cortisol this time as well. I’ve also spoken to my endocrinologist about getting him in to see him privately, he is a brilliant man who takes symptoms seriously. I’ve stressed how important it is that he does the tests before 9am this time. I feel like there’s something more to this and I just want to rule out physical causes. He hasn’t been supplementing anything that I’m aware of but he does show signs of the b12 deficiency so I’m going to make sure we arrange a test for him now (I’m waiting to arrange one for myself after stopping supplements for a while! However, I’d like to get his done ASAP). The test you’ve sent a link to, can we arrange a test through them privately without a referral from a doctor? (His doctor will not listen to his physical symptoms and just keeps telling him they are a result of depression).
Thank you ever so much for all of the information and the time you’ve spent reading my message - and replying to it. I’ve sent the info on so we can start trying to help him, he’s lived like this for far too long. X
You can order the test with Viapath, there is a tab at the top that says "Ordering info" but I haven't looked to see how to do it or if there are special arrangements needed, you may need to go to St Thomas' or have some kind of special blood draw, please check that out.
Medichecks do some related tests, check this page:
and look at the 4 tests included in the right hand column under "Related tests". However, that MMA test is a urine test and Viapath do a blood test for MMA. Medichecks also do a blood test here:
I'm afraid I don't know enough about all this to know which is the best test and whether you need all those related tests, but I have seen that MMA and homocysteine are often tested.
Before you do anything, check out what the b12.deficiency.info says about testing here:
As for the cortisol test - is this a 24 hour saliva test? Who have you ordered this from? Just a word of caution - the best adrenal test is the one that includes cortisol plus DHEA and these are only done by Regenerus and Genova Diagnostics. The two popular testing companies most used here don't include the DHEA test, and they also have some rather strange ranges starting at zero, to be honest, considering the ranges are supposed to be based on healthy people, if anyone did actually have a level of zero I imagine they would be extremely ill or a corpse. If the test ordered doesn't include DHEA as well as cortisol, I would try and cancel it and get a refund, and spend a similar amount of money with one of the other labs. I use Regenerus and have been very satisfied.
Brilliant, thank you ever so much for all of that. We hadn’t actually sent off for the tests this morning so we’ve just sent off for a combination of medichecks blood tests as well as the regenerus cortisol saliva test and MMA test. Hopefully this will give us some answers. Great to have some direction with this - it’s a bit overwhelming when you don’t know where to start!
Your relative is lucky to have someone like you for an advocate. Seaside Susie is awesome and I can't really add much more other than:
- Suggest you read Dr. Amy Myers book The Autoimmune Solution. It was not the first book I read when I was searching for my own cure, but I think it is the most straightforward in giving possible information regarding all these mysterious symptoms. Her website is very good, but I like the book because you can UNDERLINE and go back to the main points (esp. when you have severe brain fog, this is very helpful) and it lays out possible steps you can take and the WHY of taking the steps. One step at a time, as long as you move forward.
- Dr. Terry Wahls also has an excellent book, but it is more complicated and harder to absorb with brain fog. Recommend waiting on that one until they are stronger and brighter. Dr. Wahls is beating MS and has a medical study underway, so it is very powerful information.
- Your relative might want to decide to fight or not fight for their life. So many people I talk with just give up. Change is simply too difficult and complicated. Educate, educate, educate and then make a plan about the steps you are going to make to a better life. We have to find the power inside of ourselves to make change (difficult) and it can often take a VERY LONG TIME.
But, your relative has you on their side, and SS's excellent advice (and this forum), so they are already moving forward, whether they know it or not. The day I took my life into my own hands was when the emergency room doctor told me I needed to consider that all my problems were "psychological" (I am female, so hysteria was the diagnosis OF COURSE). Later diagnosed with severe Graves Disease with neurological complications. Now in remission after many, many, many changes in my life. I hated that doctor but I found the fire to not give up and to prove him wrong. AND I DID....
Please let us know how things go... I walked away from posting last night, but you both were on my mind all day. I sincerely hope your relative finds some relief and you continue to be healthy and find some answers in your journey.
Thank you ever so much for your message - I really appreciate anyone taking the time to even read my post let alone taking the time to reply! We’ve ordered a number of blood tests for him so we’ve actually booked him an appointment to have the blood taken next week. He’s got an early appointment so hopefully he will get some answers from those fairly quickly (and I will I’m sure be back here with the results to try and decipher them a bit!). I really empathise with the exhaustion and brain fog, it made me feel awful. He’s had a bad few days and I really think it’s a result of the anti depressants (and the weaning off one and starting a different one... again). He’s suffering nausea and vomiting now, the dr’s response to that is it’s just a side effect of the medication (I just want to scream at the dr - the medication isn’t helping him so why keep insisting they put him through this for little to no benefit!!).
What you say about deciding to fight or giving up resonates a lot, I worry that he’s lost any fight he had. He’s been scared to even take any tests in case ‘this is just how he is’ and he’s resigned himself to this is his life. We’ve just got to keep trying to help him see that he can get through it and there’s a better life than this on the other side of it all and it’s worth pushing through what he is just now. I’ll look up those books for him and hopefully they will provide some clarity for him. I have so much respect for your story for not giving up and getting through what you did - it really goes to show that we know our bodies better than anyone else does! I hope you continue to feel well.
As soon as we have any updates I’ll let you know (and I’m sure I’ll be back for more advice on results!). Thank you x
Still waiting on results for a 24 hour cortisol test, MMA urine test and a full b12 panel as well but at least we’ve got somewhere to start. From what I can see I don’t think the issue is his thyroid. His vitamin d is very low and I think he’s underestimating how bad this can make him feel and almost writing it off as nothing (which is very frustrating when I’m trying to help him but also a symptom of what he’s struggling with I guess). Ferretin is also showing deficient. Is there anything in there jumping out that we can start helping him with? His testosterone looks low in range and cortisol high in range (I think those 2 go hand in hand right? So if we can lower the cortisol it may help increase testosterone?). CRP is also slightly above range.
I’ve already suggested a combination drs best vitamin d (we can only find 2000iu tablets - can he take 2 or 3 of these a day?), drs best k2, drs best megnesium as well as Thorne basic b. I think I will still ask my endocrinologist to see him as I think we can help optimise his results. It’s worth a try.. right? 😔
This is showing some inflammation somewhere, but it's a non-specific test so doesn't tell you where.
Your friend absolutely must see his GP about these two results:
Ferritin - 5.52 ug/L (range 30-400)
Low ferritin can suggest iron deficiency anaemia. This is not only low but it's on the floor. He urgently needs a full blood count and iron panel. He may need an iron infusion. He must make an urgent appointment to discuss this.
Vitamin D - 13.8 nmol/L (range 50-175)
This is severe Vit D deficiency and his GP needs to give him loading doses, his GP should follow NICE treatment summary for Vit D deficiency: cks.nice.org.uk/vitamin-d-d...
(click on Management > Scenario:Management)
"Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.
* Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. His GP needs to treat according to the local guidelines or this summary and prescribe the loading doses. Once these have been completed your friend will need a reduced amount so you should make sure that he is retested after he has finished the loading doses so that he knows how much heshould then take going forward. Most doctors, if they continue prescribing, only give 800iu daily which isn't enough. If GP wont retest then he should do this privately (link below) and post his new result at the time for members to suggest a new dose to bring your level up to what's recommended by the Vit D Council/the Vit D Society - which is 100-150nmol/L - and then he'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. He can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
Vitamin B12 - Active - 94.100 pmol/L (range >37.5)
This is OK. It's below 70 for Active B12 that suggests B12 deficiency so this is a pretty good result.
Folate serum 7.83 ug/L (range >3.89)
This isn't too bad but I'd want mine in double figures. Check out folate rich foods for now, if it doesn't improve over time then he should consider a B Complex containing methylfolate such as Thorne Basic B, Igennus Super B or a Whole Food B Complex.
TSH - 1.5 mIU/L (range 0.27-4.2)
Free T3 - 5.45 pmol/L (range 3.1-6.8)
Free thyroxine - 13.400 pmol/L (range 12-22)
His TSH is where one would expect it to be for a normal healthy person, although his FT4 is rather low in range, one might expect to see that about half way through range or a bit more. His body is making a decent amount of FT3 from his low FT4 at the moment. Maybe keep an eye on this, work on the Vit D and Ferritin/Iron for now, repeat test in 3 months.
Thank you again SeasideSusie. He’s off to see his GP this morning and we really need them to take him seriously this time. He’s been telling them he’s unwell for so long and they just keep saying “you feel unwell because you’re depressed” and saying it’s a symptom of his medication. I’m so angry at the drs for not looking in to it for so long but not surprised 😔. I’ve told him to print off a note saying that they must now take him seriously and it’s unacceptable to dismiss his symptoms any longer (much easier to have that written down than it is to say it I know!). I’d already ordered him the supplements you talked about earlier but it sounds like that won’t be enough so hopefully the dr will give him something. I’ve also booked an appt with my endocrinologist who wants to see him after his results to urgently arrange the vitamin d replacement.
We’ve just had another set of results through:
Haemoglobin - 104 (130-170)
Haemocrit - 0.32 (0.38-0.5)
Red Cell Count - 4.94 (4.4-5.8)
MCV - 65.7 (81-98)
MCH - 21.1 (27-33)
MCHC - 322 (300-350)
RDW - 13.5 (11.5-14.4)
White Cell Count - 7.01 (3-10)
Platelet Count - 537 (150-400)
MPV - 7.9 (7-13)
Ferritin - 5.52 (30-400)
He is definitely anaemic and I really want them to look in to it deeper - the high platelet count comes up with all sorts of nasties online (although I know the problem with dr Google!). The poor boy is really not well I just know how dismissive his GP is - if he leaves with more antidepressants again today I’ll be livid!!
Do come back and let us know how he gets on Birdy, he really has been treated appallingly, his iron/Vit D are dire and if his doctor has ignored these he has been negligent.
They’ve sent him away with iron supplements 🤦♀️ no intention to do any tests at all to try and see why he is so anaemic and/or why his platelets are elevated. I’m pretty disgusted with this GP - considering how many times they’ve ignored his symptoms and they still aren’t interested in what he’s saying. We’re arranging for him to see a haematologist as well as the endocrinologist down here - coating us a fortune but we really need to get to the bottom of it. I’m so angry with his GP - it’s probably a good thing that he’s 400 miles away!
So we’ve have another report back which says the following - I don’t really understand what it’s saying but is this likely it’s significant? (And selfishly - Being my brother may this explain for me why I can’t get my t3 up on levothyroxine - I feel much better but I still can’t control my weight even with diet and exercise and I’m losing hair and eyebrows at a crazy rate at the minute - I’d just kind of given in that at least I feel better than I did but usually my eyebrows start falling out before I start feeling rotten! I may do this test as well!). We are seeing the endocrinologist on Wednesday.
Result
DIO2 (T92A) rs225014 Homozygous variant genotype AA
Interpretation
Consequences of the detected genotype:
- a decreased ability of the enzyme to generate the active T3 hormone This genetic variation can be associated with an increased risk for obesity.
General background to the analysed genetic polymorphism
Homozygous variant genotype AA
The type II iodothyronine deiodinase (DIO2) is an enzyme which catalyzes the 5’ deiodination of thyroxine (T4) to generate an active thyroid hormone (T3). DIO2 is further known to be responsible for catalyzing the local production of T3 in specific tissues such as the developing brain, the anterior pituitary gland, the brown adipose tissue and also in human skeletal muscles. In the human thyroid the selenoprotein DIO2 is abundant at levels 50 to 150 times higher than in placenta and it’s especially highly expressed in patients with Graves’ disease or with follicular adenomas. Exposure to the thyroxine substrate increases the degradation of DIO2, resulting in decreased DIO2 activity. Missense mutations such as the SNP T to C (rs225014) in the DIO2 gene cause the amino acid substitution Thr92Ala. In vivo studies showed that this substitution is connected to a decreased DIO2 velocity in skeletal muscle and thyroid biopsy samples and is further associated with obesity especially in patients with an additional Trp64Arg mutation in the beta-3 adrenergic receptor (ADRB3). The Thr92Ala substitution may affect ubiquination of DIO2 impairing its ability to increase its activity in the presence of low T4 levels, reducing the ability to maintain homeostasis and increasing dependence on serum T3 as a source of T3 in the brain. Patients on T4 replacement monotherapy with genetic polymorphisms in the DIO2 gene might be affected in their psychological well-being while in comparison to patients on combination therapy with T3/T4 who might show a slightly improved psychological well-being.
Note
In the presence of a heterozygous or homozygous variant genotype for one or several analyzed genes, it is recommended that the same genetic analysis should also be carried out for family members of the first degree and, depending on medical recommendations, also for the spouse.
Please note: Studies on associations of genetic variants with a certain phenotype or disease or condition have been performed mainly in Caucasian/North American populations. Thus, the interpretation of the results obtained in the present report can not necessarily be extrapolated to other ethnic groups.
So your brother has homozygous DIO2 gene variation
This means he has inherited this variation from both parents. Wether this definitely means you have as well is difficult to say without you getting tested. Definitely put the DIO2 gene test on your Christmas list!!
Another member on here tested positive for Heterozygous DIO2. (Inherited from one parent) But her sibling was negative .....which seems to suggest it's not guaranteed.
Being homozygous DIO2 is likely causing significant thyroid issues
He is likely to need at least Levothyroxine plus T3. Possibly T3 only
Liothyronine (T3) is well known and well tested treatment for depression that doesn't respond to anti-depressants. Which is why Psychiatrist can also prescribe T3
All his vitamin levels are absolutely dire....all suggesting he is extremely hypothyroid
As you have Hashimoto's it's likely he does too
Has he had ultrasound scan of thyroid?
20% of Hashimoto's patients never have raised antibodies
Ah excellent - thank you both. He hasn’t had an ultrasound scan but I will ask the endocrinologist when we see him next week. Same re cholesterol (this hasn’t been tested yet). I’m also going to arrange the the above test for me. Thank you so much for your help - I really appreciate it and finally feel like we are getting somewhere. Hopefully this will be the start of things improving for him. I’ll keep you updated!
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
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.
Help and advice please
Help with sons blood test please
Results with symptoms
Help with symptoms and T3
Test results... help please
