I got diagnosed as hypothyroid in September 2020 and have been on increasing doses of Levothyroxine since then, starting at 50mcg and now up to 200mcg daily. My TSH when I was diagnosed was 74 (!!!) and when last taken on 3/3/21 was 13.1, hence another dosage increase.
I've seen that usually when people ask for advice you need to see full blood results so I will be coming back to you in the future with these but they did not do the full range of tests last time unfortunately.
Basically I feel awful - exhausted, achey, very low mood, cold, no energy, pins and needles, no concentration, puffy-eyed 24/7. I'm not working at the moment and there is no way I would be able to. Although my symptoms seem to wax and wane, I feel like I'm getting progressively more exhausted and, as you all know, it's rubbish.
What I want advice on is that now do I just wait until my next blood test on 16/4/21? I know that they need to space out dose increases but I wondered if it would be helpful to contact my GP and ask for my vitamin levels to be tested at least?
Also, in terms of Vitamin D - is it a case of anything over 50 shouldn't cause symptoms or is it beneficial to have a higher level? Because mine has been 74 and 60 the last 2 times it was tested and when I've asked the GP they say that's fine and I'm not sure I'm convinced.
I was due my first endocrinology appointment in April which has been cancelled and not yet re-arranged. I was hopeful they would be the key to more thorough testing and answers so am disappointed...I know lots of you have had long journeys but this just feels so slow and never-ending and I'm feeling really frustrated and low about it all at the moment. I also want to make sure I'm doing everything I can e.g. supplementing vitamins if needed.
I also see from this forum that it's important to test for antibodies and know the cause of the hypothyroidism - this was mentioned to me when I initially saw an endo in A&E but then they also said they'd make an urgent appointment and I'd see them soon....any way I can speed this up?? 6 months is a long time already.
Also feel like a hypochondriac because every time I complain about my symptoms Drs just seem to say "Well thyroid can take a long time to sort out and they are all symptoms."
This post has ended up longer than I thought, think I probably needed to vent a bit too! Thanks in advance for any guidance or advice ☺️
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stevensnj2020
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Vitamin D at least around 80nmol and around 100nmol maybe better
Serum B12 at least over 500
Folate and ferritin at least half way through range
Which brand of levothyroxine are you currently taking
Do you always get same brand
Important to take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medications or supplements at the same or within 2 hours minimum
200mcg is quite high dose. Suggests poor gut absorption or lactose intolerance
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I'm currently taking Teva, was taking Mercury Pharma when I was on lower doses.
I hadn't considered the brand having an impact but it's interesting to see that others have had issues with Teva and realising that I felt better at lower doses. Although it's hard to know if this is the brand, symptoms or vitamins, since I don't know what level they are at yet.
I had no idea that I should wait until after blood tests to take the Levo so thank you for that info, will do that from now on.
I do take it at least an hour before food or drink although I also take Lansoprazole before I eat - what are your thoughts on this? Could this prevent Levo being absorbed properly if it's taken an hour afterwards? GPs say not but I do wonder.
With the private tests - is there a particular stage at which it is good to get them done? As in, would it be beneficial to do that now or wait until my TSH is more within range? Sorry if that's a stupid question, just don't think I can afford to do that too many times unfortunately.
I also see from this forum that it's important to test for antibodies and know the cause of the hypothyroidism
Roughly 90% of cases of hypothyroidism in the UK are caused by Hashimoto's Thyroiditis, an autoimmune condition. You might find this link of interest - click on the + signs for more info :
At most, doctors get antibodies tested just the once, then if the test is positive we get diagnosed with Hashi's (but sometimes won't be told the test has even been done or what the result is). Doctors consider knowing the cause of hypothyroidism to be unimportant. They just treat the resulting hypothyroidism and don't care how it happened.
Patients don't think this way though, and there are some differences of opinion on the subject.
For people who are hypothyroid, eating a gluten-free diet may reduce symptoms or symptom severity, but before changing diet it is worth asking to be tested for coeliac disease. You can't test for coeliac disease if you haven't been eating gluten which is why the test must be done before changing diet.
For those who try a gluten-free diet there may be a reduction in antibody levels. Some people feel that this is important and some people think antibody levels are irrelevant.
Some people find being gluten-free has no effects on them at all, either good or bad. In that case they may as well go back to eating foods containing gluten.
There are people who find that giving up lactose (from animal milk products i.e. cheese, milk, yoghurt) helps them enormously. Personally, I've never tried this because I like my milk, cheese and yoghurt too much, and I've already given up gluten (which did help). I don't want to restrict my diet more than necessary. But for anyone giving up both gluten and lactose, they should be done one at a time with at least three months between them.
Other issues related to antibodies...
Antibody numbers fluctuate. And in the case of thyroid antibodies they can fluctuate enough to alter the results of thyroid function tests. So, people can be very hypothyroid, then they might get what patients call "a hyper swing".
In hypothyroidism you can expect results like the following :
TSH is high in range or over the range
Free T4 is low in range or under the range
Free T3 is low in range or under the range
In hyperthyroidism you can expect results like the folloing :
TSH is under the range
Free T4 is over the range
Free T3 is over the range
People with Hashi's may temporarily appear to be mildly hyperthyroid. But this is a result of their Hashi's - their Free T4 and Free T3 may be higher than expected because their immune system is attacking their thyroid. As a result thyroid cells die and release their content of thyroid hormones into the blood stream. This raises Free T4 and Free T3 and this then reduces their TSH. But when their "hyper swing" is over they are more hypothyroid than they were before because their thyroid has been permanently damaged.
Unfortunately, doctors often over-react to results which appear to show mild hyperthyroidism in hypothyroid patients. They have even been known to tell patient they have become hyperthyroid so they must stop taking their thyroid hormones immediately. Then it becomes a struggle to get your thyroid hormones back. All that is really necessary is to reduce dose temporarily and then raise it again when the hyper swing is over. But telling doctors this is often a waste of time because they don't believe patients, particularly female ones. I don't know if you are male or female though - if you're male it might not affect you.
Thank you very much for this explanation - I am female so used to getting dismissed when it comes to these things 😏 But it's very useful to know and something I can bear in mind.
My assumption would be that Hashimoto's is the cause as I also have 2 other autoimmune conditions - T1 diabetes and aplastic anaemia which has been treated with a stem cell transplant 2 years ago. Unfortunately this complicates things as any symptoms are written off as being caused by diabetes or the transplant, which is why this wasn't diagnosed until I was in a real state. I saw an endocrinologist in A&E and she did mention Hashimoto's but since then it's not been mentioned again. As far as I know I've not been tested for it.
I'm vegan so lactose free anyway although gluten free is something to bear in mind. I have also tried to reduce eating/drinking soya products as I've heard soya is not recommended for hypothyroidism. Gluten free would mean restricting my diet even more but if it made me feel better I'd happily live on cardboard at this stage!
Unfortunately this complicates things as any symptoms are written off
Yes of course. [Sarcasm on] Patients can never have lots of diseases. [Sarcasm off] After the first one or two diseases it all becomes a long-term fight to prove that symptoms aren't all in one's head, and going to the doctor just becomes an exercise in learning how to deal with or cope with permanent gaslighting.
Couldn't agree more with this...feel at the moment like the attitude is very much 'what do you expect? Your thyroid's underactive, you won't feel well' but not listening at all to symptoms or how they've fluctuated...and sure they think I'm exaggerating mild symptoms! It's so annoying.
Also been told by different Drs that I will feel better immediately/feel better after about 6 months/never feel better and then they wonder why I keep asking them about it!
I'm vegan so lactose free anyway although gluten free is something to bear in mind. I have also tried to reduce eating/drinking soya products as I've heard soya is not recommended for hypothyroidism.
So as vegan you are presumably supplementing B12 daily
Also need Vitamin B complex
a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
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
With B12 result below 500, recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Obviously extremely difficult/impossible to maintain iron levels on vegan diet without supplements
Important to regularly retest iron and ferritin levels if taking any iron supplements
I was planning to take a B complex and Vitamin D but got a telling off from my Dr about how it's harmful to take things you don't need...starting to realise that maybe I put too much trust in my GP.! Definitely going to follow your recommendation, although will get vitamins tested first. Maybe I can then bring them back to this forum.
I can't supplement iron due to a haemotological issue...was blood transfusion dependent for a while so Ferritin is around 350. I'll have to check with them about folate.
You can write a new post and ask us for feedback on quite a few different tests, and if nobody can help someone will either say so, or you just won't get any replies. If you get no replies don't take it personally.
Mainly, we can help with Thyroid Function Tests, nutrient level tests, and to a lesser extent Iron Panel and Full Blood Count.
There may be a very limited amount of info we can give on Liver and Kidney Function Tests - but mostly in those cases just to direct you to better sources of info than us.
I was planning to take a B complex and Vitamin D but got a telling off from my Dr about how it's harmful to take things you don't need
Did your doctor actually test to find out whether you were low or deficient in these things? I mean... Bottom of the range might be fine for your average doctor without much brain to support, but we need much better than that.
I know liver and kidneys are perfect so I have something going for me 😂
I've already gained more knowledge about vitamins from here than I have from my Drs...Vit D has previously been as low as 50 but told this was fine and not to supplement (I suppose technically not deficient but far from ideal...) B12 was around 549 in November but could be completely different now. I'm calling the Drs tomorrow for vitamin tests so hopefully will be able to get some up to date levels.
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Should I accept GP advice for dose reduction?
my doctor should be my endocrinologist 
So I am being referred to an endocrinologist...thank you for your help so far...what should I expect?
What should I ask my GP? First appointment 
Should I see my gp or an endo or who? 
