Hi. I am 5 weeks into taking Levothyroxine and feel no better. Some days are really debilitating - palpitations, facial sweating (was always a cold person!), inability to focus, sleepiness. I was sub-clinical for 15+ years before being given meds and was hopeful that these meds would change my life to normal again! I feel as though I have been sleepwalking and dragging myself through life for years and feel at breaking point. My TSH is 10 - so only borderline. It had fluctuated between 3 and 5.6 for years without meds. I’m beginning to wonder whether the symptoms are due to hypothyroidism. Sorry for babbling, but would appreciate your thoughts. 8 week wait for GP appt made me tearful today. It’s not as if I bother them, I seldom make appointments.....
Newly diagnosed and struggling....: Hi. I am... - Thyroid UK
Newly diagnosed and struggling....
Welcome to the forum
How much levothyroxine have you been started on
Which brand of levothyroxine is it
Bloods should be retested 6-8 weeks after each dose increase
Likely to need need increase once test results are back
ALWAYS Test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Has GP tested thyroid antibodies for autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease usually diagnosed by high thyroid antibodies
Also essential to test vitamin D, folate, ferritin and B12
If not been tested yet, request these are included at next test
Are you currently taking any vitamin supplements, if yes, what exactly
Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medications or supplements within 2 hours
Some like iron, vitamin D, calcium, HRT or magnesium not within 4 hours
Hello , and welcome . 
Several things are obvious all at once . TSH 10 is not borderline. TSH 4.5 ish is borderline . (whatever the top of the lab range used )... most 'healthy' people without any thyroid disease have TSH about 1 ish. ...anything over 3 ish is getting a bit '?'
Being 'sub clinical' can still mean some people have lots of hypothyroid symptoms . sub clinical just means the fT4 is still in range , it has no bearing on how rubbish you feel .
I was 'sub-clinical' with TSH @ 6.8 and was on my knees, and was treated with Levo at that point on the NHS, because my thyroid antibodies were extremely high showing them that i had autoimmune hypothyroidism , so they were sure it would get worse overtime anyway .
So i hope knowing this makes you feel a bit better about 'babbling' .. you are absolutely allowed to feel horrible , and no one here will be at all surprised by it .
Take a look at this graph .. it shows you the most common 'healthy' TSH levels ..as you will see TSH 10 is not 'borderline' .. it's 'off the end of the page and into the next chapter' . healthunlocked.com/thyroidu...
So hang in there, 5 weeks is really early in 'thyroid' terms .
Let us have a bit more information~ like what dose you are taking now .... and any other thyroid bloods test results you have including 'lab range' if you have it with them [it will be in brackets after the result]
Also, have you been told if you have 'autoimmune' hypothyroidism ? ( have antibodies been tested ?)
People will then be able to reassure you about what to expect next , and what you need to do to make sure it happens .
Welcome to the forum Buntikins
My TSH is 10 - so only borderline.
Did your GP say that was borderline? Well, poppycock! Once your TSH reaches 10 that is overt hypothyroidism.
What was your FT4 result (including reference range)?
I am 5 weeks into taking Levothyroxine and feel no better.
Well, it's unlikely that you will to be honest.
What dose were you started on?
What brand of Levo do you have? Teva brand upsets a lot of people and this is because it is lactose free and they use mannitol instead of lactose, it seems that it's the mannitol that causes adverse reactions in some people.
It can take 6 weeks to feel the full effects of Levo. 6 weeks after starting Levo we should be retested and have an increase in our dose. 6-8 weeks after the increase we should be retested and another increase if necessary. It may take a few increases to reach your optimal dose.
It can take months to feel better, sorry but you probably didn't want to hear that 
. We have to increase slowly with thyroid hormone.
For future reference, when doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, coffee affects TSH so it's possible that other caffeine containing drinks may also affect TSH.
* When taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use Biotin in the assay).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
It's possible that you may have low nutrient levels, so ask GP to test Vit D, B12, Folate and Ferritin, maybe mention that you have spoken to Thyroid UK (the charity recommended by the NHS as a source of information about thyroid disease, but don't mention the internet or forum) and they advise testing nutrient levels. You can post results, with reference ranges here, for guidance on whether you need to improve your levels and how to do this.
8 week wait for GP appt made me tearful today.
I don't understand what's going on with some surgeries. I'm in Wales and my surgery is back to normal for routine blood tests and for GP appointments you ring on the morning and explain what it is you are concerned about, they have a meeting mid-morning to triage all the calls (any urgent cases eg tachycardia they invite you there straight away for an ECG, etc) then you either are given a face to face appointment, a telephone appointment or told to see a pharmacist if the GP doesn't feel it's necessary to see you. So in your circumstances, a repeat blood test would already have been organised for 6 weeks after you started your Levo with an appointment to discuss results to be organised when blood results are back.
Hi Buntikins, welcome to the forum.
I'm afraid that 5 weeks is only the blink of an eye in thyroid terms - yes, I know that sounds a bit weird but what I'm trying to say is that it's a very, very short period of time, and you still have a long way to go. Sorry. Especially when someone has been hypo for as long as you have. And, despite what any doctor may have told you, you were actually hypo when your TSH got to 3. 'Subclinical' is just a get-out for doctors to avoid having to treat people. But, hypothyroidism is like pregnancy: either you are or you aren't.
How much levo did they start you on? Whatever it was, it needs to be increased slowly. The usual protocol is to be retested after six weeks and the dose increased by 25 mcg. And that is repeated until you feel well. It can take a long time to find your optimal dose, but you should feel progressively better as the dose is slowly increased.
To get good advice on here, always accompany your questions with copies of your latest blood test results and the ranges. Ideally, you should be tested for:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin.
But, realistically, the NHS will never test all of them. How many of these tests have you had done? If you haven't got a copy of your results, then ask for a print-out at reception. It is your legal right to have on. You need to know exactly what was tested and exactly what the results were, and keep your own records.
Were you told how to take levo? On an empty stomach, leaving at least an hour before eating or drinking anything other than water, and at least two hours before taking any other medication or supplements. Are you taking anything other than levo?
Ask as many questions as you like, here, there should always be someone to answer - or attempt to answer. The more you can learn about your own condition, the better.
Take care.
Thank you so much for your reply, grey goose. They have only tested my TSH, which is 10. Yes, I do feel really frustrated and quite resentful at not being treated earlier. They didn’t even tell me I had been sub-clinical all those years until my TSH reached 10! It would have explained so much. I guess I’m just going to have to be patient, and remain hopeful. Thanks again, grey goose x
You are legally entitled to printed copies of ALL your blood test results and ranges.
Recent tests and previous
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
As soon as you had first test with TSH over 5, you should have been retested 6-8 weeks later
After 2 tests with TSH over 5 and symptoms, especially if you also have high thyroid antibodies you should have been prescribed levothyroxine
See flow chart on top of page 2 here
Hi Buntikins,Only to support what greygoose has said. She has given you excellent advice on how to proceed from here.
Unfortunately, for most of us, it takes years to end up hypothyroid and, once there, nothing happens quickly. Finding the right dose for you will take time and patience. If you start on levothyroxine, you will need to raise it slowly over several weeks and months. Thyroid hormones are not a quite fix.
Hang in there, you will get there eventually. You can ask as many questions as you´d like here; there is a lot of expertise and patient experience on this forum, and members will be available to answer your questions and comment on your lab results. Don´t despair. But you need to give it time and be patient.
Hi, I wanted to tag onto your post because I'm only a week and a half into taking levothyroxine and feel much worse than when I didn't take it. My tsh was 8. Honestly feel like stopping.
Please persevere. Jo xx
Buntikins, I am also new (22 April) to all this and niaively thought it was resolved by a tablet a day for life.... not different levels and nothing about it. Am learning fast from this Forum. I too feel like a wreck and thought I’d lost my mind a couple of times it is all so unreal. I’ve hardly been over the door and certainly not able to venture out alone. Have had to cancel a trip to Wales next week as not up to it. On positive side, I’m signing up for my on line records and will ensure I get the details of blood tests, tips picked up from this Forum.
While I could tell you that learning everything you can about hypothyroidism (there are at least 12 books written by doctors, pharmacists and patients) would help your chances in being optimally treated, that's not the case. In fact, virtually all doctors in all countries follow a TSH→T4 ideology and are very resistant in going against it.
It consists of having you take a pituitary test (TSH) and increasing or decreasing the T4 -levothyroxine (T3 is usually verboten) dose based on its level. It is irrelevant to them whether you have results to show that your FT4 and FT3 are sub-optimal or even below the normal range. They've been promised that the TSH is the only test required and that it does the job (indirectly) of the other thyroid tests. They'll be punished in a number of ways if they violate that practice. The bottom line is that this type of treatment regimen is very simple...for the doctor. No liability. And if you don't get better, well then...it's not your thyroid (I've actually been told that). Get used to being gaslighted....
Your best bet is to spend time finding a doctor who is willing to ignore the TSH test and continue to increase your dose over time (usually 6-8 week intervals) while relying on the actual thyroid blood levels, FT4 and FT3 as well as your symptoms. If he's willing to add some liothyronine (T3) , all the better (if you need it because you don't convert T4 well).
Documentation of your symptoms and vital signs can sometimes be advantageous, as this gives the doctor written evidence that you were not experiencing symptoms of overstimulation (too high a thyroid dose). The very first knee-jerk reaction from a doctor is to lower your dose, because your TSH level dropped below his preferred number. He assumes that you aren't experienced enough (palpitations, sweating, nausea, diarrhea) to know if you are over-dosed. In fact, he doesn't consider it your job to know because he'll step right in to prevent it (lol). When push comes to shove, being under-dosed is the new, accepted norm (ever since the TSH test was invented). It's that liability (for him) thing I mentioned...
And finally, learning how to ask the right questions can also be useful. The term is negotiating. Getting him to explain his position and then offering to protect his liability is key. His biggest fears are: a) killing you b) having other doctors or the medical board finding out that he doesn't use the TSH test for dosing or that he also prescribes T3. The ex-communication he'll receive will be on an epic scale, including weeping and gnashing of teeth of biblical proportions.
Attempting to educate your doctor, by reading parts of a thyroid book to him will usually end badly, as he will be demand to be considered the more educated person in the room.
Hi! I see you received a lot of good information. So, what I'm going to say is if you're still not feeling better try Armour. There seems to be this one size fits all when it comes to what is prescribed and it's always Levothyroxine or Synthroid, Unfortunately, the one size doesn't work.
I went to several doctors before I found one that would listen to what I said my symptoms were and continued to have while on both levo and syn. I found out a lot about Armour here and was prescribed that and have been fine ever since. I posted my experience on this site as well so if you're so inclined you can read it and perhaps get more information.
Thank you so much everybody! I have been overwhelmed how helpful you have all been. A GP rang me on Fri eve, after I’d had a bit of a meltdown when talking to a receptionist (I’m not usually hysterical and don’t like this new me!). The good news is that he was fantastic and is arranging a whole battery of blood tests. He said some of my symptoms sound hyper rather than hypo (palpitations and sweating), so wants to rule out underlying conditions. I’m still very tired but feel relieved and am trying to be patient. I really appreciate all of your advice and encouragement. It means a lot. Thank you.
When I started taking levothyroxine I was put on a very low dose (25mcg). After 8 weeks and further blood tests this was raised to 50mcg. It took 7 or 8 weeks for me to feel the benefit of this increased dose. This has continued to be the case whenever my dosage has been raised, I don't feel any different for at least 6 weeks. Unfortunately you do have to wait for it to work.It's good that you are having more blood tests to see if anything else is going on. Make sure you get a copy of your results and post them on here for some of the very expert people to comment on. It's good if you have a sympathetic GP but I've found it so helpful to learn as much as possible about the way the thyroid works. You can find lots of really helpful information on this forum. Good luck and `I hope you feel better soon.
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