So at the start of the year I took a private blood test through a company called Thriva, anyway it came back my tsh was elevated, and I was severely vitamin d deficient. So the doctor who reviewed said, I was to take another test in a month. So fast forward to March and I took a more comprehensive thyroid test, with the same company, the doctor said I probably had an autoimmune thyroid disorder. So the same doctor who reviewed the results said if I experienced any symptoms like hair loss or fatigue, go to my gp. Now that’s exactly why I had been to the doctors a month prior, due to having worsening hair loss for 3 years or so among other symptoms.
Thyroid-stimulating hormone (TSH) (range 1-4.3) my result 5.12 mlU/L
Thyroxine (T4) (range 66-181) my result 85.2 nmol/L
Free thyroxine (FT4)(range 12-22) my result 12 pmol/L
Triiodothyronine (FT3) (range 3.1-6.8) my result 5.3 pmol/L
Thyroglobulin antibodies (TgAB) range 0-115 my result 119 kU/L
Thyroid peroxidase antibodies (TPOAb) (range 0-34) my result 163 kIU/L
Vitamin D (range <45.8 deficient) my results 18.8 nmol/L
Anyway I presented the results from both blood tests to a doctor I’d seen before, She just scoffed saying those test aren’t reliable, and was mystified as to why I’d need another thyroid test as the one done earlier in the year was normal, and also the results from the above test was normal. So I mentioned the elevated antibodies, and she said well I’d expect you’d have elevated antibodies considering your mum has had thyroid issues. So she reluctantly agreed to re-test my thyroid plus antibodies, and send me for a thyroid ultrasound. This is all good I suppose, but I’m still left feeling unwell and the biggest hypochondriac ever. So since the doctor didn’t mention any treatment for vitamin d, can I just go ahead and treat it myself with supplements?
Anyway sorry it’s so long
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I always say if you feel your doctor treats you like a hypochondriac then I bet you have some sort of thyroid problem.
Dare I say it, your doctor is an idiot and you deserve better. You’d think with all of those antibodies and the fact that your mother has thyroid problems and your results are awful then she would realise that you had thyroid problems too.
You definitely need to supplement your vitamin D - it is far too low. You haven’t tested for B12, ferritin or follates but you want them well up within their ranges to help your thyroid.
Hopefully now your doctor has decided to take action things will improve.
I’m sure others who have experience with hypo ( I’m in remission from Graves which is hyper with antibodies) will come along with more advice.
If you don’t get more response soon post again. Well done for persisting - I can imagine the struggle you have had so good for you. 😉
Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L.
Choose the most appropriate treatment regimen.
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).
Once the loading doses have been completed it's essential to know your new level so that you know what dose of D3 to continue with. Your GP may refuse to retest, if so you will need to do it yourself :
Come back with new level for information on next step.
The Vit D Council recommends a level 125nmol and the Vit D Society recommends 100-150nmol. Your GP will most likely be happy with 50nmol, so you can see how important it is to continue supplementing after the loading doses.
Your GP wont know, because they're not taught about nutrition, but there are important cofactors needed when taking D3.
D3 aids absorption of calcium from food and Vit K2-mk7 is needed to direct the calcium to bones and teeth where it is needed and away from arteries and soft tissue where it can be deposited and cause problems.
Magnesium is also for the body to convert D3 into it's usable form.
Choosing the right form of magnesium is important, see which one is right for you :
Oh right, I just assumed that because my doctor didn’t suggest any treatment that I could just supplement myself. Well I shall go back to my gp, but she questioned the validity of the blood tests so I’m not sure if she will even prescribe vitamin D but here’s hoping. Anyway thanks for all the info 🙂
If she doesn't like your private test then invite her to do her own. With a level that low I don't think she can argue that it's anything other than dire, but if she doubts the validity of the test then let her prove otherwise.
Come back and let us know what happens. I self treated for severe deficiency with a level of 15nmol, it was my choice not to go to my GP.
I used Doctor's Best D3 softgels. Basically started off higher than the recommended amount for the first couple of weeks then 5,000iu daily. I raised my level from 15 to 202 in 2.5 months so then had to drop the dose down, now keep my level maintained at around 150.
Once the recommended level is reached, we need to find our maintenance dose, which could 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. Whilst trying to find my maintenance dose, I went down lower than I like, but have now found that the maintenance dose I need to keep it at the upper end of the recommended range is 5,000iu daily, most people don't need that high a maintenance dose.
Great thanks for the info 👍I shall look for the D3 soft gels. Once I have adequate vitamin D it might help my thyroid/antibodies. One question, if I’m due to get another blood test should I wait till after to start my vitamin D or does it not matter?
As you have Hashi's, it's often suggested to use an oral spray. However, some Hashi's patients have done well with the softgels.
One question, if I’m due to get another blood test should I wait till after to start my vitamin D or does it not matter?
Blood test for what? If you want to retest Vit D then I'd wait 3 months. When retesting Vit D, you continue taking it but on the day of the test take it after the blood draw not before. If you just test thyroid then I wouldn't worry about the Vit D.
Great thanks I will look on there, I have ordered the better you vitamin D spray with K2. But I think I’ll use the gels first as they are 5000 IU then use the spray for maintenance. Yeah my doctor said she would do another thyroid panel plus antibodies. Well thanks for all the help, I think you guys help more people than any GP ever dose 👍
I understood the NHS use Thriva labs so her claims the tests are unreliable are not tenable or all NHS tests could simply be dismissed like that too! She sounds a total nightmare - can you not see someone else who might actually do the job they are paid 100k a year to do? She should be struck off for negligence on that sort of money but doing nothing but rubbishing your suffering and dismissing your proactive and expensive efforts in trying to improve your health in large part necessary because of her utter incompetence . How do people like that get away with it? Any other job they’d soon be called to account. Please don’t feel like you are a hypochondriac, that’s what I believed and I nearly died of thyroid disorder because of people like her posing in a white coat but devoid of real medical knowledge or nouse, lacking the ability to realise a person is ill or run appropriate diagnostic tests to diagnose their condition...even when told by the patient they suspect a thyroid problem because of a family history of the condition and some knowledge of the symptoms in relatives. You can take a horse to water as they say...
It's not Thriva who actually do the tests. Like Medichecks and Blue Horizon, they are "middle men" and the samples are sent to labs for processing. It's the actual labs that may be used by the NHS.
On Thriva's website they say:
We have partnered with a few of the UK's best private pathology labs to process all our blood tests. Our labs use various monitoring techniques, including inspections and audits, to promote confidence in laboratory results, to assure the quality of the data generated and to ensure compliance with Medical Laboratory accreditation (ISO 15189) and the Care Quality Commission.
Synlab
Synlab is a trusted expert in clinical laboratory services and includes Integrated Pathology Partnerships (iPP), established in 2010 to work with the NHS to deliver transformed pathology testing services in the UK.
County Pathology
County Pathology is an accredited and independent laboratory based in Guildford, Surrey. They provide a private blood testing service to doctors, companies and individuals.
County Pathology are also used by Medichecks and BH. The Doctor's Laboratory are also used by BH. Medichecks also use another lab but I can't remember who that is.
Thanks for the clarification but the fact remains that the Doctor has a cheek saying the tests are not reliable - it is the doctor who cannot be relied upon to do her job properly
They don't like patients taking things into their own hands and proving a point, it hurts their egos. Many, many doctors refuse to acknowledge private tests, even those done with MonitorMyHealth and that service is provided by an NHS lab and promoted by the NHS . Their website even states "Monitor My Health by the NHS" and still some doctors reject them.
It should be made illegal for them to refuse to consider the tests! You think they’d be grateful for patients who make the effort to understand their condition and try to look after themselves. So much for a partnership It's a dictatorship!
Oh wow that’s pretty horrible, hope you are feeling better now. Yeah I’ve found some doctor’s to be pretty useless in dealing with thyroid issues, especially pertaining to the autoimmune aspect. I think when your numbers still just about fit into the normal category, they just assume you are fine and why would you feel otherwise. So very frustrating, I feel like by the time I get any medical treatment I’ll be sleeping 20hrs a day, weigh a ton and have lost all my hair 😂
Yeah it’s so bad they put the ranges even higher too quite out of step with the rest of the world, it’s criminal really. My numbers were so high when I did finally get tested there was no way they could be deemed just over normal. I never put weight on I was like a rake till the last few weeks before treatment when I had begun to feel starving hungry all the time! I did lots of sleeping tho my hair thinned but was still reasonable
Yeah I did read in places like spain, you would get treatment when your tsh got to 4. In the UK, I think you need to be severely hyper/hypo to get treatment. That’s crazy do they think people like being ill, if it were anything else I’m sure you’d have been diagnosed much quicker. If you don’t mind me asking do you have hypo or hyperthyroidism? I’m no more hungry than I was, but I’m still putting on weight. Also my heart rate has dropped from normally being about 80 to to consistently being in the low 60s, could be nothing to do with thyroid but who knows.
I had an odd one it is called atropic (no goitre) autoimmune thyroiditis. Sometimes it is called Graves hypothyroidism and I did have a lot of symptoms that were more akin to hyperthyroidism. like being very thin, anxiety, angina, dreadful pretibial oedema (I think that’s right) where the shins swell and itch so badly you scratch them until they bleed, sleeping very little and having so much energy I did not know what to do with it but I also had a very low heart rate about 50 walking around, and very low blood pressure, double and blurred vision as well as and other more typically hypothyroid symptoms - slowness of mind, thining hair, dry skin etc as time went on the hypo symptoms began to dominate and the hyper periods became shorter but I’d swing from one to the other. I started getting really horrible symptoms like nightmares, headaches, hallucinations, violent mood swings and depression that was so all encompassing it felt like a huge black cloud that would never lift. I began to feel like I was not really human anymore just a thing I thought people were following me around and everywhere smelt utterly disgusting, I was very cold all the time (had been for decades), my sleep was totally disordered and I felt exhausted, between bouts of hyperactive mania where I could suddenly run 10 miles with zero effort and became very aggressive . As for the weight about a month before diagnosis or may be it was only a few weeks I began to feel so hungry that the impulse to eat was simply overwhelming. I would eat a massive meal and as soon as I finished feel as if I had eaten absolutely nothing and eat it all over again...may be three times in total before finally stopping it was not very nice, repulsive really, but the drive to eat was so very strong like it was on autopilot. It was then I did begin to put on weight. It became much worse on Levothyroxine (gutting) after 2 years I had put on 4 stone and felt the worst I ever have. I resorted to NDT and that rapidly resolved everything.
I would think your heart rate changes are related - the heart is very sensitive to thyroid hormones especially T3 and any changes in levels can cause problems, slow or speed up the heart cause irregularities in heart beat and even lead to heart attacks. Like me you may vacillate between hypo and hyper states as the thyroid slowly dies and small areas dump their stores of thyroxine into the bloodstream causing these abnormal spikes in hormones. It happens with Hashimotos indicated by variations in TSH.
The weight gain is due to the thyroid hormones being required to convert food to energy, when this goes wrong as the levels of hormones drop the body can only convert the food to fat or at least a large percentage becomes fat where it would have been turned into energy. no amount of dieting or exercise will help you loose an ounce it will just exhaust you. My mother used to eat just a tiny little salad every day but became a size 18 once she was diagnosed and given chemotherapy for thyroid cancer and Levothyroxine she went from a size 18 to a size 10 in less than three weeks that is how powerful thyroid hormones are. The pituitary keeps signalling for more hormones as it senses things are not right upping the TSH but the poor thyroid cannot comply it is already flogging as hard as it can producing higher and higher proportions of T3 to T4 as T3 is what it tries to keep in range, so the storage hormone side of things becomes severely depleated ie T4 until finally the thyroid simply dies dumping its final stores of thyroxine in one last swan song and my experience of this was that I went completely crazy. Luckily I had got a diagnosis by this time (initially they said hyperthyroid then after a second blood test hypothyroid) and was told I must get started on medication immediately. This must have saved my life, because I suddenly descended into an artic like freeze which was simply horrendous the cold was indescribably awful, I just longed to die so my suffering would end but miraculously I pulled through. It was a very long haul after that to get reasonably back to rights. Thank god for this site which has been invaluable.
So to your question I still don’t really know if I had hyperthyroidism or hypothyroidism or as I suspect some sort of more unusual hybrid of the two starting as Graves and ending up as hypothyroidism. I had an ultrasound of the thyroid about three months after diagnosis to check there was no cancer but it was very small, shrivelled and not compatible with having any function or any cancer either. So I am now hypothyroid for life.
I think in the states they treat when TSH is 3.5 same in Germany and probably everywhere but the UK, who have now set it at TSH of 10 which is beyond belief and very cruel I ndeed. I think enlightened doctors might treat at 5 or above with symptoms but those medics are as rare as hens teeth and their hands are being tied by stupid rulings from NICE (they should be renamed NASTY!) . If you can afford it ThyroidUK have a list of medics that are more sympathetic to our plight, you could get a copy from admin and try and see one of them.
I would deffo recommend going gluten free as I found it very helpful it was quite a long time after diagnosis around when I commenced NDT, so if you do it now you may get more benefit.
Oh wow sounds like you had a horrible time 😞glad you’re feeling better now. I am in no way feeling as bad as you were, but I think my thyroid is just beginning to get damaged. So I’d rather get treatment now, my tsh is just over 5 and I feel so run down I couldn’t imagine how bad I’d feel with a tsh of 10 😧 If our doctors know we have a thyroid issue, then waiting till we are horribly ill is no less than sadistic. From my understanding, doctor’s seem to ignore the immune aspect, and just treat the hypothyroidism/hyper once your thyroid is basically dead and useless, or you are so ridiculously ill. Just really unfair, if it was any other condition you’d get treatment fairly swiftly 🤷🏼♀️
I quite agree - the sooner it can be treated the better! Yes I had quite an experience my TSH was 110 😱 but very grateful I pulled through. I hope you can get treatment very soon.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamins
i had very similar results to you, except my free t4 was lower. my GP poo-pooed me too, I went away and researched, started self medicating and got myself back to good health within 3-4 years. I was offered metformin by GP instead of taking my thyroid issues seriously ( I am autoimmune as you are from those tests). I cannot tell you how many medical professionals I have sat in front of who havent a clue about autoimmune and think thyroid is oh so simple. I was told recently by a consultant endocrinologist that I was doing very well self treating and that she agrees some people need T3 ( which I take in the form of NDT instead of NHS prescribed levothyroxine/t4). She discharged me and agreed I need to listen to my body and refer to my own research which has got me much further than the NHS GP who ignored my symptoms and focused only on TSH
from those results it seems you need to look at the immune system issue, and try to get your free t3 and free t4 up to a better level that feels good for you, and improve vitamin D levels. IT is often reccomended that b12, folate ferritin and vitamin D are optimal to feel well with autoimmune. I also found healing my gut, reducing stress and generally treating my body well all helped me get my autoimmune under control. unfortunately for me i needed NDT because t4 alone doesnt seem to be helpful- expensive but worth it in my opinion
Hmm it’s like GP’s don’t take it seriously, and just assume it’s in our heads. Well at least that’s how I felt, walking away from my appointment today. I have to assume the next blood test and thyroid ultrasound, will help in getting treatment. But if I get nowhere with my gp I will seriously consider self treatment.
Don't let them make you feel like that....it's happened to the best of us😊but life is too short! I was misinformed by Drs and 'specialists' for decades, and it led to me becoming very ill and debilitated. I lost years of good health and I thought I was going mad [and probably was😳] but it was due to my erroneous trust in Drs. I can't believe how little they understand about thyroid conditions [or indeed how the body works] but once you read and research the condition, their errors become obvious and can be avoided.
This forum was the best thing that ever happened to me...there are so many kind and knowledgeable members to help. Without them I would never have had the confidence to go it alone and restore my health. I would say that you need to check your B12 iron and folate levels as if your Vit D is low, then it's likely they are too, and deficiencies can cause serious problems. Post for advice when you get them. Good luck🍀 x
Gosh hope you are feeling better now 🙂yeah I’ll continue to do my own research. At least I can implement some dietary and lifestyle changes, don’t need a doc for that. Yeah everyone is so helpful on this forum, not sure what I’d be doing without all the help and advice offered 😊
I'm much better thank you since I took advice from here and started treating myself instead of listening to Drs who diagnosed me with more diseases than any one person could possibly have! And I have learnt so much too! x
Like you Mamapea1 I felt. I was going mad - dementia at least. I felt absolutely dreadful and shook like a leaf,
It’s so wrong that so many thyroid patients are made to feel like that.
There is so much guesswork then eventually if you’re lucky enough they might eventually do a few blood tests the results of which are often not even interpreted properly.
In my case by the time anyone took me seriously enough to do blood tests I had lost so much weight that when the receptionist whose children went to school with mine years ago, brought the doctor a cup of tea and saw me she said ‘Good heavens you’ve lost weight’ I’d lost a good three stones.
Yes I was shaking too when I found this forum, and it was almost impossible to use the iPad which is all I had at the time...I kept clearing what I'd written! My tremors were a result of a long standing B12/folate deficiency, which my GP was sure I didn't have...ditto the Vit D deficiency, which when eventually tested [after much begging] was 4 and I had bone deformities! TSH was 'in range' so all ok as far as she was concerned...I begged to try T3, and even when a paramedic suggested it, I was told no, there was nothing else except Levo ~ it was a never ending nightmare that I will never return to, thanks to this forum. It really shouldn't be like this though, and as you say, so many are suffering. It's the ones that still have absolute faith in everything their Dr says that I feel sorry for 😕 x
You have had such a tough time. When you’ve had Graves you can’t understand how a doctor can actually miss it. If only they would listen to their patients especially those with a multitude of weird symptoms.
I’m always astounded when I meet people who are quite ill and yet who trust their doctors implicitly and wouldn’t dream of questioning them or heavens preserve us take their health into their own hands.
As for saying ‘you’re within the range’ that drives me round the bend. I told my doctor that I wanted to be optimal and that by the time you actually get out of the range at either end you are on your last legs you feel so ill.
That sounds extremely dangerous, and I agree, it's unbelievable that they miss these obvious symptoms. The whole system is flawed imo, and if they're going to pay Dr's bonuses for having a certain amount of patients with particular illnesses, [and the accompanying meds] the Dr's are going to look for those illnesses and tick the boxes. The whole antidepressant scam makes my blood boil!
It's impossible to properly treat thyroid patients without doing all the relevant tests and taking a patients symptoms into account, but this seems to be the norm. I also think a bit of advice [at the very least] about vitamins and minerals, should be considered important, but they appear to be ignorant in this area too....it's hard to believe. x
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