Hello everyone, I have been reading many of your posts to others trying to understand my own situation better. I have to say thank you to you all as the detail and information have really helped me too.
I'm Hypo with hashimotos. My only antibody test was positive at 519.
My last two tests [ 6 wks apart] gave TSH of 10.1 and then 10.45.
Doctor won't prescribe me levo because my T4 is 10.1 which is in range [lower amount being 7.9]
So because of all your advice I pushed for vitamin testing because of exhaustion.
All vitamins were under range!
B12 was 154; D3 was 25; ferritin was 12 and folic acid was 2.8 which is below the stated 3.2 range.
By phone nurse practitioner said umm...I need multi vitamins for sure and also buy my own ferrous fumarate tablets.
So I said what about loading doses for D3 and B12 so she agreed to that. Then she wondered why B12 is low, so I said well I take 40mg of esomeprasole for some years now. I suggested that I try to reduce this to which she said yes it's worth a try.
So I'm biding my time for about 8 weeks when all the bloods are due again. I'm going to have to get bolshy if they don't want to try levo then.
I have numerous potential symptoms. They include new louder tinnitus, higher cholesterol with statins prescribed. Higher blood pressure than a year ago. Ridged and breakable nails, poor memory, week wrists and achy elbow joint. All sorts.
Thank you everyone again for all the information. I can't believe they'd rather give me statins and blood pressure tablets and ignore the core reason for needing them. So much for preventative!
We must all soldier on but it does make you wonder how many struggle and never get properly looked after.
My Mum had hashimoto hypothyroidism for many years and was on levo.
Many thanks
Angie
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Anjidav
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The next test you have, do follow forum advice re timings of blood draw:
a)complete thyroid blood tests early morning (preferably before 9am)
b) drink only water before the blood draw
This ensures highest TSH reading, lowest FT4 reading and offers consistent results. (Please note, this is a patient-to-patient tip)
Can you add the reference ranges for your blood test results (in brackets after results) as these can vary between laboratories.
Personally I wouldn’t take ferrous fumarate tablets without first requesting a full iron panel from your GP, to better understand the reason ferritin is low.
As advised by SlowDragon such an elevated TSH indicates you are hypothyroid and require Levothyroxine. TSH should always be under 2, with most members here reporting they feel best when this falls closer to/ under 1.
Hello Slowdragon, thank you ever so much for the reply. They have tested me for pernicious anaemia and I don't have the evidence for that fortunately.They are, after I asked for them, going to give me 6 B12 injections and D3 tablets to take weekly for 5 weeks I think.
Nothing for the low folic acid and my own cost to buy ferrous fumarate tablets.
There is no test that can prove you do not have Pernicious Anaemia.
If you have had an Intrinsic Factor antibody test, that has a high rate of false negatives. Some people have had numerous negative tests - then one positive. And that is all you need.
But you cannot be sure you do not have PA from negative IFab tests alone.
Thank you, I hadn't thought of that. I've had the test twice about 2 or 3 years apart and both negative. If I can successfully lower and then stop the esomeprazole then it might be much clearer if without supplements my B12 is low again...
Any and every person taking any PPI such as esomeprazole should have B12 considered - and tested - appropriately. It is a major failing that this is not built into the systems.
Thank you ever so much. Again it helps to see it in black and white like this and to know what to do. I tried once to bring T3 into the conversation and I was ignored and it was brushed over. I got the feeling they'd never heard of T3!! So they know nothing about why vitamins so important to convert T4 to T3!
Of course you were ignored - they don't have a clue what T3 is for in general! That's why I plumped for a private TSH T4+T3 blood test done at home+ignore the GP recall for thyroid blood tests as they do not test T3 (and some labs even refuse to test even if requested). After private blood test it was clear I don't convert well from T4 to T3 so no wonder I struggled with weight gain, cold, constipation, dry skin, thinning hair, crappy nails for decades. Got myself a private Endo and he prescribed my T3. Don't be pushed around by ignorance - gain knowledge here! Then go fight from a position of strength cos you'll probably know more than them!!
Assuming GP will give LOADING B12 injections anyway even if PA test is Negative
But in unlikely case they don’t…..you will need to supplement B12 daily
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add prescription folic acid from GP
Once you finish folic acid on prescription add a separate vitamin B Complex
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
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
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
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 test result serum B12 was below 500 or active B12 (private test) under 70
Hi there, I'm not vegetarian or vegan. I like chicken and turkey , salmon and cod. But I've lost all interest in food inspite of being 5 stones overweight...all gathered since I turned 50 in the last 9 years. I'm trying to find motivation and get more active more often. Eat a bit more salmon as a super food. We also have fillet steak once every 2 or 3 weeks and I like my broccoli and cauliflower.I'm not sure when I lost interest in food but work stress and especially looking after my parents and stressing over their care brought me down a long way.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
My last two tests [ 6 wks apart] gave TSH of 10.1 and then 10.45.
Doctor won't prescribe me levo because my T4 is 10.1 which is in range [lower amount being 7.9]
Is it your TSH or your FT4 that is 10.1? If it's your TSH, there's no problem, he can start treatment right away since they believe that the TSH tells them 'all they need to know'. And your TSH is telling him you're hypo.
Just sending you a massive hug - as I looked back to see if this was your first post on here so read of your situation these past few years -
Now its time to step for your own health - your health care professionals have sorely let you down and initially it is not up to you to be buying your own supplements -
Aww thank you Pennyannie, that is really lovely of you. It has been a tough time... losing both my parent within a year of each other. My mam was hypothyroid from about 50 ish.Hug back in thanks to you... x
You will likely end up on here with information overload -
just go one step at a time - sleep on anything that confuses you - and don't worry -
there is no quick fix but first try and use your energy to focus on getting the right help through your primary care doctor, even if these means changing doctors to someone who hopefully understand and knows more :
SlowDragon has kindly sent you all the necessary links - which your primary care provider is obliged to follow should they wish to keep their NHS contract ??
However, currently, sadly many O/P clinics are backed up :
Hi ..In my experience, the high cholesterol, vit d deficiency, high blood pressure are all connected to the hashimoto.
I had slightly high blood pressure, slightly high total cholesterol, slightly low vit d,
Doc offered statins from a single cholesterol test, which I declined emphatically.
My 2nd cholesterol test, revealed hdl higher, pushing total higher, which they said was bas. Mmm.
I had a doppler test on my carotid arteries as I had a pain in my neck there when I got stressed, which was easily done, (I'm not a stressy person, so this was odd) my heart tests were fine, all passageways clear.
I live in Portugal, I work outside for minimum 12 hrs of the day, vit d should not be an issue.
I do take vit d and b complex supplements adhoc, twice a week or if I get run down, I eat a couple of Brazil nuts adhoc to give selenium .
Isotonic drink, I use powder, one full dose but in 1 ½ litres of water.
I've had a long journey, still tweaking. Please pm me if you want to talk more
Just sending a message of solidarity. This sounds so much like my experience. I had three blood tests which suggested I needed levo, but although the tests suggest my bloods are out of range, they aren't bad enough to warrant treatment. My vitamins are also at rock bottom. On a daily dose of D2 and K3, B vitamins and folate.
I am still absolutely exhausted and the weight gain is really upsetting me, particularly as I spend half of my life at the gym and eat a very clean diet. My mum was diagnosed with a thyroid issue at a similar age, and I have told them this, but they are so resistant to helping me. I have no idea why because thyroid problems rarely get better, so I don't understand the hesitation.
My main symptoms apart from the above are numb extremities, hair that is falling out by the handful (including thinning eyebrows), puffiness, achey joints, brittle nails that are prone to fungal issues, and I'm with you on the tinnitus. I've even seen an ENT specialist because I thought my ears were a symptom of long Covid. I'm assured there is nothing wrong with them, but I beg to differ.
I've been made to feel like a whingebag, and I've pretty much given up on asking for repeat bloods because no one is interested. It's odd because they were the ones who flagged the issue in the first place! I have also struggled to get an appt when I requested to get my bloods drawn first thing in the morning. It's almost like they'd prefer to ignore it than treat it which is so frustrating.
I’m so sorry your doctor won’t prescribe Levo yet. My TSH was 9.32 and my T4 was 13.0 (range 9.0 - 23.0). Luckily I saw a locum GP last week who had no hesitation in prescribing Levo. My mum started taking thyroxine at my age.
I now realise I have had symptoms of hypothyroidism for many years. I’m mystified. Don’t healthcare professionals recognise the clinical indicators, don’t they join up the dots, or don’t they understand the impact on our quality of life?
I know there are risks associated with over treatment but failing to recognise and treat us is really risky too. Not only can this lead to serious physical harm, it can also destroy our quality of life, relationships, and ability to work too.
Perhaps, as with perimenopause, the fact that more women are adversely affected gets in the way of healthcare policy and practice.
Wishing you all the best in getting Levo. You’ve inspired me to ask for a loading dose of vitamin D (I was fobbed off with buying an over the counter supplement).
It makes such a difference to know that I am not soldiering on alone. When we join together our voices are stronger and we can help to get justice for everyone.
Don’t healthcare professionals recognise the clinical indicators, don’t they join up the dots, or don’t they understand the impact on our quality of life?Unfortunately the answer to all the above is a huge NO.
They treat each symptom individually rather than looking at the whole picture.
If we were to go back to the model of having a "family doctor" who knows your medical history and your family's medical history, then will things be picked up earlier.
Over several years I saw various GP's about different things which, looking back, could all have pointed to thyroid issues. It was only when I was on my knees, both figuratively and literally, and saw a GP who was hypo herself that my thyroid problem was diagnosed.
Think being seen by the same GP is on the health policy agenda. Tricky in practice (lots of GPs work part time). The one I used to see now only works one half day per week.
Maybe targeted training of healthcare practitioners who deal with perimenopause would be a good idea too. I’m sure many of us who are experiencing fatigue and brain fog don’t consider hypothyroidism as a possible explanation.
Menopause has had lots of media coverage recently, which is great, but it can overshadow other things.
That's very true. I struggled to stay at work for 5 year plus inspite of menopause symptoms and then they pushed me out when I was at my lowest waiting for my Mum to pass away and praying it wouldn't be a horrible ending for her. It wasn't thankfully...it was peaceful and in the end fairly swift as well.
Seeing the same locum GP now who seems to be quite well-informed and is happy to do proper shared decision making. Because I live in a rural area changing practice would be tricky. Only one in our village.
My commiserations Anjidav. The level of ignorance is always astounding. Time after time. It seems to me you have a pretty good idea of the basics and you have got some really good advice from your replies. I have no doubt this will take some understanding. Be patient with yourself - if not with this dunderhead you are having to deal with!
Much up to date research and opinion tells that ‘so-called subclinical’ must be treated, to avoid calamitous ill health later. I think of subclinical as only a difference in presentation. It is hypothyroidism. It’s true some post natal hypothyroidism can be ‘temporary’. However Hashimotos is not temporary and should be treated.
Hi artistapple, thank you. I think I have to borrow that line and point out that this isn't something that may be temporary. I like that approach added to the longer they leave it the more damage to the thyroid...I think...
My Dr started me on levothyroxine in 2022 when i had repeat TSH blood tests some were comming in at 6.9 and some well over 5 etc the nurse who took bloods once said if this one comes back over 4 Dr will start you on levothyroxine hence where i am now what is Your Dr thinking?
It's amazing isn't it? I found one southern hospital that said actually over 15 before they would treat. Honestly no effort to do the right thing for us at all.
Yea some Drs are totally in the dark about thyroid problems etc we need to keep pushing and asking these Drs even after prescribing Levothyroxine etc they very rarely offer repeat blood test to see how things are going ive had to insist on blood tests itsa totall shambles.
If you had two consecutive readings above the TSH reference range and you are symptomatic, they should start levothyroxine replacement therapy. In addition, the two TSH readings above 10 should clearly indicate that you are hypothyroid. This is stated in the guidelines and for some reasons your care provider chose to ignore this. In my view, this borders on medical negligence.
High cholesterol is a clear and well-recognised sign of hypothyroidism. Lipid and cholesterol metabolism is regulated by T3, the active thyroid hormone. If your levels of T3 are low (which they conveniently don't measure!), cholesterol cannot effectively be cleared from the circulation and therefore levels increase. This is NOT a dietary problem, it is a metabolic problem and should be treated as such. The NHS itself recognises high cholesterol as a hypothyroid symptom due to low levels of T4 and T3:
Low levels of thyroid-producing hormones, such as triiodothyronine (T3) and thyroxine (T4), can change the way the body processes fat. This can cause high cholesterol and atherosclerosis (clogging of the arteries), which can potentially lead to serious heart-related problems, such as angina and a heart attack. Therefore, you should see a GP and ask for a blood test if you repeatedly have symptoms of an underactive thyroid.
By not treating you with levothyroxine, they are actually going against their own set guidelines.
I know it is not easy, especially if you are feeling unwell, but try to find the energy to stand up for yourself and insist on treatment initiation, otherwise you will continue to struggle. You had some great advice on nutrients already, and once you make a start on correcting your deficiencies, you will notice a difference. Take it one step at a time. And be patient with yourself, slowly and steadily is the ticket!
Oh thank you so much. Some of this is entirely new to me and I didn't know. I have said once why treat for cholesterol when we know I have hashimotos and they just poo pooed that!
Yes, that shows how much they really know about thyroid disease! The level of ignorance is truly staggering 🙄. They rather throw statins, metformin, blood pressure tablets and anti-depressants at you, rather than make the connection to thyroid disease. And then they wonder why people lose faith in the medical profession.
Stay strong, we are all here to help and support you, so you are not alone 🤗.
Thanks Lottyplum, it is horrible as we are left to climb mountains without the right equipment. The last 10 years of my life have been the hardest physically due to health and especially this feeling of no energy, poor memory, tinnitus, cold hands etc, etc....The NHS wouldn't know preventative medicine if it bit them!
I was diagnosed on an elevated TSH and I just felt the doctor knew what he was doing , but I am of the opinion now that many doctors are just looking for a reason to write a script. I had zero physical symptoms which should have caused him to find out why my TSH was elevated and not just assume my thyroid was not functioning. I ended up with severe hyperthyroid symptoms which was slowly destroying my quality of life. I finally got smart and started to do a lot of reading to find out why if I was following directions how I could be so sick when I had not been sick prior to starting the Levothyroxine . I was obsessive with my diet, added supplements and kept a daily log which included the changes I was making and the effect. I had been on Levothyroxine for 4 3/4 years by that time, so things wouldn't change quickly until I had the courage to start to withdraw from the med ( I did tell the unhappy doctor) , but I had to do something cause on top of all my symptoms I was dizzy and had poor balance. What did it for me is when I would go to church and walking back from communion I would be wavyy and felt like I was going to pass out . I stopped going cause I didn't want to end up in an ambulance ! Descending stairs it felt as though I would fall, so at home I would " ride the wall while descending" . Being off the drug for awhile sure started to help. I continue to monitor diet and supplement. Most recently I replaced the supplements with a T3 Conversion Booster vitamin supplement which I have been using like 2 1/2 months and I think it has helped . I think it is hard to balance supplementation and I don't have the money to be paying for lab tests all the time and so it is a better choice for me . I hope you get to the cause of your issue. I would recommend keeping a daily log and record how you feel what you are eating and how you may be supplementing . This site has been most helpful with people sharing their experiences. Feel free to reach out and if I can answer a question I will cause I fully appreciate quality of life . Best Wishes
1.5 Managing and monitoring subclinical hypothyroidism
Treating subclinical hypothyroidism
1.5.2
When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3
Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
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Suggest you show this to your GP and ask him/her to consider a trial of Levo
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What to say to the doctor!
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tsh 3.09
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