I’ve been unwell for the last three years with doctors unable to find a cause. My heart rate has slowed to 45-50 bpm, I have recurring left sided chest pain, my blood pressure keeps dropping through the floor, I’m cold to the touch but I am constantly saturated in a cold sweat. Recently I gained a stone in weight and my doctor decided to test my thyroid. Two days after the blood test I got a call from the doctors saying my thyroid function was low and I needed to pick up a prescription for levothyroxine.
I was told to take 1 x 25 mg a day and repeat the blood test in 6-8 weeks, which I did today. I asked the nurse what my results were and she said T4 was 8.8. I asked the ref range and she said 12-14 and I was only slightly out of normal range. She didn’t have any other figures. Can anyone offer me any advice please? The nurse made me feel like I was being a nuisance and I can’t get an appointment with my doctor for another 2 weeks!
I felt a bit better the first few weeks of taking the tablets but I’m starting to feel really poorly again and I’m feeling really lost 😂
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Nurse is wrong, T4 8.8 is considerably below range and you are profoundly hypothyroid and very undermedicated on 25mcg Levothyroxine. See if you can get a telephone appointment with your GP or another GP at the practice as you need a new prescription with an increased dose.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_...
For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.
It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.
You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.
Thank you so much for taking the time to answer my cry for help so comprehensively!
I wasn’t confident with the nurses response and I left wondering if she shouldn’t be seeking an alternative career since she had next to no interest in how bad I was feeling. I also went to my local chemist and asked the pharmacist for some advice but he didn’t have the answer either and basically agreed with what the nurse had said. He gave me a printout which he got off line which says if levels are mildly low there’s no point treating with levothyroxine so I’m worried they will stop giving me it after today’s test just when I was starting to feel a little better.
The other thing the nurse told me was the lab in our hospital doesn’t test T3 so she couldn’t tell me what level that was either. From everything I’ve read I was under the impression it was important to know T3 levels to check how much T4 was being converted. I’m really confused about what’s wrong with me and not sure how much more I can cope.
T4 below range is not mildly low it is below range. Mildly low would be T4 low in range. By the way the T4 range 12-14 is not a thing. 12-22 and 12-24 are possibilities.
There's really no point in testing T3 when T4 is so low as T3 is either low in range or below range. Not many GP practices are able to order T3 testing now. You can order private thyroid and T3 tests but it's really not worth doing until your TSH is around 1.0 and T4 in the upper range.
You are hypothyroid. If you post your TSH result I can tell you whether you have primary or secondary hypothyroidism.
Levothyroxine is supposed to raise your T4 level to at least halfway in range through to the upper range. Even when this is achieved it will be the Levothyroxine delivering the higher T4 so although dose may be adjusted it should never be stopped. Hypothyroidism is a life long condition requiring daily Levothyroxine replacement.
I asked the nurse what my results were and she said T4 was 8.8 and that was all she would give me. I asked if there was anything else, which is when she said I was only slightly under the ref range. I could ring the surgery tomorrow and ask? Do I need to ask specifically what my TSH level was/ is? Is there anything else I can ask?
I’ve just phoned the surgery. My T4 was 8.8 and my TSH was 13.1 she said there is nothing else on the results only those two she then hung up before I could ask her the range! I’m in the UK if that helps?
I honestly don’t know what to do they only gave me enough tablets to last 8 weeks and I’ve run out today so don’t have any for tomorrow and I have been feeling really poorly for a few weeks now. She said I have to ring back after 5 to see if the doctor will prescribe any more. The blood test may or may not be back by then. She said I may have to wait until the results arrive with the surgery. 😂
TSH 13.1 is high. >10 with T4 below range means you have overt hypothyroidism. When you next see your GP ask what the T4 range is because it varies from region to region. TSH ranges are less variable.
Ask your pharmacist to 'lend' you some Levothyroxine to tide you over until your GP can issue a repeat prescription. Ask your GP receptionist how you arrange a repeat prescription and in future request a repeat prescription 7 days before you run out of tablets.
Have you fllled in a form to get a medical exemption certificate so you don't have to pay for prescriptions?
Yes I filled out an exemption form yesterday and then I crossed my fingers because I don’t think my doctor will sign it.
I will ask the range when I see my doctor, I can’t have an appointment until the 14th of March. I phoned the Lab but they said it’s confidential information and I have to speak to my GP.
I was also reading that I should not have taken the levothyroxin before the test yesterday, so now I’m worried the test will come back ok.
If it is a NHS lab receiving taxpayers money the information is not confidential. Tell the lab you will make a Freedom of Information Act request if they don't tell you the ranges to YOUR results.
Your results are not going to come back okay because you took Levothyroxine before your test and your doctor will sign the med ex form.
Not sure where to post the following now I’ve got the ranges. Hope you don’t mind me asking you? It’s all very confusing how do I find out if I have Hashimoto's and what difference does it make?
I actually managed to get a printout of my results from the receptionist at the surgery. The printout says
TFTs indicate patient is biochemically hypothyroid
Serum TSH Level 13.1 mu/L (0.27 - 4.20)
Serum free T4 Level 8.8 pmol/L (12.0 - 22.0)
There’s nothing else on the printout.
Doctor has also gavin me a prescription for more Levothyroxin but it’s is still at 25 mg until the results are back. Hopefully someone will contact me when they’re back from the lab 😂
Don't assume you'll be contacted, ring the receptionist every day until you have the results. Mine are back from the practice the morning after the blood test but I have to allow 48 hours for the duty doctor to review them and release them.
TSH 13.1 is high as I've already said and FT4 8.8 is considerably below range. 25mcg will not be sufficient dose and will need increasing but continue taking 25mcg until GP increases dose.
Look for thyroid peroxidase antibodies (TPO) on your results. If it's not there ask your GP to test TPO at your next blood test to confirm or rule out autoimmune thyroiditis (Hashimoto's). Having a confirmed Hashimoto's diagnosis makes no difference to your treatment but some people change their diet to exclude gluten which can be helpful in reducing symptoms and antibodies.
When you get your new results and ranges post them in a new question as updates get overlooked.
I’m afraid the nurse was talking out of her derrière. You definitely need a raise in levothyroxine. As Clutter says, try to get a phone appointment—it may be the doctor doesn’t even need to have a conversation to put up your dosage, so don’t be fobbed off.
I was so excited when they finally found a reason for the problems I was having. After about 14 days I was starting to feel markedly better, even my heart rate increased to around 60bpm and I stopped having sudden drops in blood pressure and the sweating was under control. It only lasted about ten days though and then I started to feel poorly again, which I’m hoping can be corrected with an increased dose of levothyroxine.
Tbh when I’m reading about hypothyroidism, it sounds really serious so I’m confused why my doctors and nurses are so uninterested.
Perhaps because they shouldn’t have missed it! Did they ever test your thyroid before or was it almost an accidental find after years of you feeling unwell?
Anyway - yes, absolutely. 25mcg is a baby dose, a starter dose. It is in no shape or form a replacement for what your thyroid, were it healthy, should make for itself. You probably need 4 times as much if not more, but it needs raising slowly if you’ve been low for a while, say a raise of 25mcg every 4-6 weeks. I am bewildered really as to why they’ve tested FT4 and not TSH as that’s quite unusual. It does make me wonder how your doctor’s other hypothyroid patients are faring, because if you’re a typical example he must have a lot of unwell patients... You may even want to consider changing doctors as I’m not sure yours is all that competent—the nurse certainly isn’t.
Anyway, for now—persist. Don’t worry about making a fuss—this is your health at stake and it’s often a fairly easy fix, inexpensive even. Say that you’ve taken advice from an NHS approved information site (yes, that’s what this is ) and that you’ve been advised you need a raise in dose.
Hello again, thanks for taking time to help me. I feel so unwell all the time and to be honest if this is my life from now on I’ve seriously had enough! I’ve been through three years of weeping and wailing and begging for help!
No I’ve never been tested before, I think they thought I was being a bit of a hypochondriac! I was having such strange symptoms, breathlessness, profuse sweating, where I felt extremely hot but I was cold and clammy to the touch, unusually low heart rate, high blood sugars, blurred vision and extremely low blood pressure, but all the further tests were coming up negative or unexplained.
Apart from having an abnormal antibody that they now think is due to Sjögren’s syndrome. I am naturally skinny typically a size ten and I’m 5ft 11 inches which is tall for a women and makes me appear really thin. I gained a stone in a short space of time which didn’t make sense because I’m not a big eater and all my records show a steady weight maintenance over the years. I also have ehlers danlos type three, which became their go to in the absence of anything else it must be your EDs! They tested my thyroid when I said I was gaining a lot of weight which was just over six weeks back.
Some doctors—not all, but far too many—think that slim people can’t possibly have hypothyroidism so don’t think to test it. But with your other symptoms it was borderline criminal not to test you for it.
You’ ve probably lost the will, but there are grounds for a formal complaint there. Anyway... I think once you do get yourself on a decent dose of levothyroxine you will start to feel a lot better.
Something else to consider— if you’ve been hypothyroid for a while (and I think it’s likely you have been), your Vit B12, folate, ferritin And Vit D levels are likely to be quite low and will be adding to how ill you feel. When you do get to see the doctor, ask for all of them to be tested.
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased
Nice guidelines saying how to initiate and increase
Note most patients should be started on 50mcg dose of Levothyroxine. Also that eventually most of us need somewhere between 100mcg and 200mcg
You are legally entitled to printed copies of your blood test results and ranges
You want to know TSH and FT4. Also have thyroid antibodies been tested, if not ask that they are when bloods are retested after 6 weeks on your increased dose of 50mcgs
Also should have vitamin D, folate, ferritin and B12 tested.
If antibodies are high this is Hashimoto's. About 80-90% of primary hypothyroidism is due to Hashimoto's (also called autoimmune thyroid disease)
Thank you! I will ring the surgery tomorrow and ask for a printout of my results. I’ve been taking the levothyroxine at night so can eat breakfast first thing without worrying I need to wait for the med to kick in. I was tested for vitamin D today when I had a repeat thyroid test but that was requested by my rheumatologist when I saw her this week. Haven’t been tested for the other things you mentioned. I will ask about them. 😊
You need good levels of vitamin D when on Levothyroxine.
Many of us find we need it at least over 80nmol, around 100nmol may be better
If you need to supplement Better You vitamin D mouth spray is good as avoids poor gut function. If you put results on new post members can advise on dose needed
Thanks again! Everyone is being so helpful, I’m actually feeling more positive and not so isolated. I felt so dispondent. I’ve had more help and advice in the last hour than I managed to get in 3 years!
You are legally entitled to your results so do not be put off even if you have to copy them down yourself.Mine are provided online by the practice and all practices are supposed to be doing this.
Your TSH should be 1 or under when being medicated. So you are grossly UNDER medicated. FT4 also looks BELOW range - you must be feeling so poorly and you are being neglected by your Doctors ....
Hi thank you for the response. Yes I’m feeling really poorly. I’ve actually taken early retirement from work because I’ve been off work for over two years and they were pushing me to return or face dismissal. When I started taken the tablets I thought it was a miracle cure and I would keep improving so I was really down when the symptoms started returning. On the plus side I had convinced myself I had a life threatening illness and I was going to die. Silly now I look back but it’s been pretty scary especially watching my heart rate going lower and lower. 😊
If you want to read the stories of others - then click onto the name above in the post and you can take a couple of minutes to read the Bio. You will quickly see that so many of us have had a long journey to wellness - that is if they have completed the Bio
I too gave up a lucrative career and started my own business so I could slope off in the afternoons and sleep and be alive to prepare supper ! On moving to Crete to retire back in 2004 - I was sleeping from after lunch until supper time - every day.
During a lifetime of complex illness it seems that my thyroid was not tested
You need to see your GP get an increase to 50 mcg and retest in 6-8 weeks.As others have said you are undermedicated at present which is not too surprising at this stage in your treatment.Rude receptionist ,always get the ranges which are shown in brackets after the test result.
This site is so very good . You can rely on them for all the help you will need . I was where you are now and am much better now as a result of these guys .
Hi thanks for the reply. It’s an excellent resource and everyone seems very clued up. I feel a little less overwhelmed knowing there’s somewhere I can ask questions without worrying I’m being a nuisance. I am getting really anxious all the time, I can’t seem to think straight, I keep muddling up my words. The doctors and nurses are making me feel worse instead of better!
Glad you’re feeling better, how long did it take before you got some improvement in your symptoms?
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