I have been hypothyroid for 3 years, only felt some relief from symptoms on 100mg but the doctor lowered it saying it was too high, was on 75mg of levothyroxine, I told the doctor I still was not feeling well and she ordered blood tests they came back indicating that I was overprescribed so she reduced it to 50mg, have been fatigued, always tired, freezing cold feet, aching, so I did some private blood tests which showed I was underprescribed, the doctor has upped my levothyroxine to 75mg again been on this dose for 5 weeks but symptoms have still not improved and she refuses to do another blood test for 3 months, my T3 levels have always remained in the lower end of the range. I asked about T3 medication and was told they do not prescribe it and if I got it from another source she would stop my Levothyroxine, refuses to refer me to a specialist. SICK OF FEELING UNWELL
DOCTORS TEST 12 AUGUST 21
Serum TSH level
Serum TSH level < 0.01 mu/L [0.38 - 5.35]
Below low reference limit
COMMENTS May be over-replaced if being treated for primary hypothyroidism,
assess in clinical context. Current guidelines suggest a target of
TSH within the reference interval. Consider a reduction in dose. Ref:
Thyroid disease: assessment and management. NICE NG145
You will need to do FULL thyroid and vitamin testing approx 6-10 weeks after dose increase in levothyroxine to 75mcg
Which brand of levothyroxine are you currently taking
You need BOTH TPO and TG thyroid antibodies tested (will need to test privately as NHS refuses to test TG antibodies if TPO antibodies are low)
Essential to regularly retest vitamin D, folate, ferritin and B12 at least annually
What vitamin supplements are you currently taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
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 and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Mulletcore Iodine supplements should only be taken if you have been tested and found to be deficient. Even then you need to be monitored. You already get iodine from your diet and levothyroxine contains iodine. Iodine can have a negative effect on the thyroid - it used to be given to hyperthyroid patients to reduce their levels.
The advice from the Mayo Clinic is:Do not take zinc supplements and copper, iron, or phosphorus supplements at the same time. It is best to space doses of these products 2 hours apart, to get the full benefit from each dietary supplement.
The advice generally suggested on here is to test and only supplement the individual vitamins you are lacking. All supplements to be taken 2 hours away from live expect vit D which is 4 hours away.If you type multivitamins into the search function on here you will find posts on why they are not great and also advice on what to do from various members.
Iodine is extremely controversial for anyone on levothyroxine
A) there’s significant dose iodine in your levothyroxine and should be enough
B) iodine use to be used to treat HYPERTHYROID patients
Only ever supplement iodine under the care of an iodine specialist
And never supplement iodine unless tested and found deficient
Unlikely deficient unless vegan
Hi Mulletcore I’m sorry you are feeling unwell and worn out and down with it. I feel the same at the moment so can sympathise. I won’t go on about my issues, but what I will say is maybe time for another GP?? To threaten withdrawal of Levo, refusal to refer to an Endo etc is not having your best interests at heart and I can only imagine how upsetting that was.
It appears your doc was alarmed by the low TSH and the notes attached, but clearly doesn’t understand thyroid; the key word there was ‘maybe’ over medicated. When actually your T3 and T4 didn’t indicate that. You can only be overmedicated if your T3 is over range. They have not understood that and simply gone off the lab note.
Your TSH on the private tests is way over range and T3 and T4 extremely low so it’s no wonder you feel wretched. When did you increase to 75mcg? As it will take 6-8 weeks for your system to adjust, you should retest at that point to see where things are. Private bloods again if your GP refuses.
I will say I’m still a novice learning to grapple with my hypo compared to many, many experts on here (I can see SlowDragon has already replied for example), but this would be my view on your lab results and GP’s comments. But the admins and other ‘ knowledgeables ‘ will be able to help out more.
I’m reducing my dosage at the moment and it really DOES take a long old time for the impact to be felt. I’ve had to grit my teeth over the last few months and ride things out. It really is heartbreaking and emotionally exhausting, but know you are not alone on this site. There are loads on here that have supported me and it’s made a huge difference to my being able to cope with the mental toil of being really unwell, along with debilitating physical symptoms.
I’m not suggesting you have funds for a private Endo but if so, you could look into that option. Thyroid Uk have a list of thyroid friendly Endos that you can access either in your area or remotely if necessary.
increased to 75mg about 6 weeks ago, but doctor said I have to wait 3 more months for a blood test, I used to work 40-50 hours a week before I got thyroid problems have cut down to 24 hours but am finding it takes me days to recover from doing these hours. Thank you for your advice
If you are able to repeat bloods and book in with a different GP at the practice when you have results to hand. I’m sure some (lots) of GPs will ignore a private result but at least you’ll have some leverage to ask for an increase and insist how much better you were on 100mcg. I don’t know what your weight is but the NICE guidelines suggest 1.6mcg per kilo, I think 🤔
You could ask for a 75/100 alternate days even and offer a retest in 6-8 weeks. On your T3 and T4 there is no danger of you getting overmedicated as you are way low in the range. That GP is using TSH only. Yes, the work thing. The hypo has a huge impact on this, doesn’t it? When not optimally medicated. It’s awful and stressful to feel you can’t do what you did. I am on a long term absence due to mine at the moment and normally do mad hours in a very pressured job, a job that I absolutely love. I feel your frustration.
I'm really sorry to read you are suffering with thyroid problems. I have seriously walked this walk too. I was also diagnosed with myxoedema on top of lymphedema. So I feel your struggle.
Be carful with supplements abd do plenty of research before deciding which to take.
I am 51 now and peri menopauseal. I take 4000 iu vitamin d3 (high strength) buy on Amazon and a supplement called Boron. I did quite a bit of research into these and found they might be useful to me.
I was also put on 50g levothyroxine but I had a pounding fast heart beat abd shakes and felt sick so couldn't take them.
You are your own advocate. It's extremely hard to get doctors to listen or believe you and I struggled to get help way before covid kicked in.
There may be another path you havnt looked at yet. Im not promoting anything and I don't benefit at all from the advice I'm about to give. This just worked for me.
I follow a, low carb lifestyle and on 8th Feb I will be following it one year. My symptoms have greatly reduced and pain has been reduced as well.
If you need anymore advice or are interested give me a shout.
I havnt had my thyroid blood tests done recently. To be perfectly honest now I feel well it has slipped my mind abd it's really hard to see a, doctor these days. I will but this on my to do list and let you know my results. Good luck with your struggle
Please don't be taken in by the dread words "in range" or "normal". You are aiming for "optimal" ... For example, if the lab range for free T4 is 12 - 22 and your result is 12.5, you will likely feel rubbish. And if it's 19.5, you will certainly feel much better. But both are "in range" and so acceptable to a bored, lazy, or uninterested GP.
Most of us don't care what TSH is doing once we are on thyroid meds - as long as it's well below 2 [your GP may tell you that suppressed TSH will inevitably lead to bone and heart problems, but s/he's wrong about that too: low TH is only dangerous IF it is accompanied by no thyroid meds AND waaay over-range free T3 [and even then it's the free T3 bit that's dangerous] BUT we need our actual thryoid hormones - free T4 and free T3 to be nice and high - usually in the top 1/3 or higher of the lab-range. And again, over-range free T4 isn't dangerous IF free T3 is poor (ie you are - like me - a poor converter)
Most GPs can't or won't test free T3 - at least until free T4 is over-range. And tbh, you probably don't need T3 meds - lio - unless and until you are on enough levo to bring free T4 nice and high in range - say 80% through the lab range - and can then show free T3 is lagging. Currently free T4 is an utterly feeble 15% through range - so free T3 is inevitably also low, and equally inevitably, I'm afraid, you feel awful. You are NOT over-prescribed - you are woefully under-medicated - but have suppressed TSH and that is confusing your GP and making you ill
I have just had a conversation with the pharmacist who asked me to take my levithyroxine first thing in the morning and 30 mins before any caffeine as this can have a negative affect on absorption. I take a load of vitamins too so am now taking them at night instead of just after breakfast. I have another blood test in a month to see if there are any improvement in my levels with this ‘switch’ 🤞🤞will keep you posted.
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
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