Hi, I've recently been diagnosed as having subclinical hypothyroid, I've had symptoms for a while, fatigue,weight gain,feeling cold to name just a few, my TSH was 7 in May and then 9 in August (range 0.3 4.5) , T4 was in the normal range,because of a strong family history of thyroid issues my gp decided to trial a small dose of levo 25mg, I was happy about this as I had been feeling so awful. My issue is I've been taking levo for 3 weeks and the past week hasn't been great,I have awful anxiety, racing heart, insomnia and feel off, before I started the meds I was sleeping 10 hours a night now I barely sleep at all. I'm starting to doubt if my symptoms are due to thyroid or something else. I would really appreciate any input as to if this is normal and what steps to take next,should I stop the levo? Thanks.
Subclinical Hypothyroid : Hi, I've recently been... - Thyroid UK
Subclinical Hypothyroid
Welcome to the Forum
Looking at your forum name……are you vegetarian or vegan?
TSH of 9 is high
GP should have tested Ft4, Ft3 and thyroid antibodies. Have they done so?
How old are you approx?
Standard starter dose of levothyroxine is 50mcg
Which brand of levothyroxine are you currently taking
Many people find different brands are not interchangeable
Teva brand upsets many people
Levothyroxine doesn’t “top up” failing thyroid, it replaces it
So starting on too low a starter frequently causes more issues
When hypothyroid, especially if cause of hypothyroidism is autoimmune thyroid disease also called Hashimoto’s, low vitamin levels are EXTREMELY common
Essential to regularly test vitamin D, folate, ferritin and B12
Has this been done
What vitamin supplements are you currently taking
Thanks so much for the reply, I'm 46 and vegetarian also soya free, the levo brand is north star, gp only tested TSH and T4 he didn't mention anything about t3 or hasimotos, iron levels were fine, I've had low b12 and vit d in the past and supplement with better you b12 spray,and D3000 with vit k,really should have these retested as it's been a while. This is all new to me and I'm feeling a bit lost and confused with it all,I assumed insomnia anxiety and rapid heart were hyper symptoms, I just don't know what's going on with my body at all.
Northstar 25mcg is Teva
(Catches masses of people out)
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems.
Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
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 or at repeat prescription.
New guidelines for GP if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
healthunlocked.com/thyroidu...
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
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
verywellhealth.com/best-tim...
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
See/contact GP and ask for new prescription for different brand levothyroxine
Request testing of vitamin D, folate, ferritin and B12 and thyroid antibodies
Or, if GP refuses, test privately
Just testing TSH is completely inadequate
Have you got any other results
You are legally entitled to printed copies of your blood test results and ranges.
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 diagnosis and regularly if low
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
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 all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Often when on a starter dose of levothyroxine we feel worse. In simple terms the thyroid has been working hard to send out enough hormones. When thyroid hormones start coming from elsewhere the thyroid stops struggling and it's production drops. However a low dose of 25mcg is not enough to compensate for this stoppage so you feel worse.Blood tests in y weeks and an increase is usually the next step.
Thanks so much for the reply, So would anxiety,insomnia and tachy be a usual occurrence when starting treatment? My next blood test isn't while the end of November, I'm so fed up of feeling rubbish, the GP just shove you out the door with no explanation just a box of pills.
Hi Veggielass, welcome to the forum.
Pretty certain you are hypo with a TSH of 9! You are hypo with a TSH over 3, but the NHS has set the bar higher - usually over 10 - to avoid having to diagnose and treat so many people.
It often happens that symptoms get worse when you start levo - especially on such a small dose. What happens is, 25 mcg is enough to stop thyroid production of hormone, but not enough to replace it, so you become even more hypo. What you need is an increase up to 50 mcg, and there's no reason why your doctor shouldn't give you that increase now. Try asking him, tell him how bad you feel and that you know you need an increase in dose.
Thanks for the input, I think I'll have to ring them tomorrow ,you're right,he wasn't actually going to do anything until the level went to 10 but because of my family history he said my thyroid would eventually fail. I'm just so confused with some of my symptoms since starting levo,they seem to be more hyper than hypo, I just don't know what's going on!
Sounds like he has tested thyroid antibodies and they show autoimmune thyroid disease (aka Hashimoto’s)
See flow charts on here
gp-update.co.uk/Latest-Upda...
With two blood tests where TSH is over 5, plus symptoms and especially if you have high thyroid antibodies, you should have been prescribed trial of levothyroxine
My TSH is 3.0 with free T4 and free T3 at bottom of range. Currently on 25 mcg levo (been a week) . Can I up to 50 mcg ?
I thought you were on T3 mono-therapy?
Anyway, it would be far far better if you started a new thread, giving the exact number, so that other preople can give their opinions. Very few people are going to see this question tacked onto a thread that is 2 years old.
How old are you, by the way?
Yes I decided to switch to T4 because T3 was getting difficult to manage .I am learning so much through this forum that I cannot resist to ask questions on random threads .
I would really like to know if I can take 50mcg T4 instead of 25 mcg .
25 mcg has been good but would want to know if 50 mcg would be good if not a problem
My age is 33 . I am a male . 6ft tall .
50 mcg is the normal starter dose of someone of your age. Are you self-treating? If so, I think it would probably be a good idea to increase to 50 mcg. But then leave the full six weeks on that dose before testing.
Yes I am self treating . Reason being same old , doctors not taking me seriously.I apologise in advance for hijacking this thread .
My TSH on multiple tests was swinging from 1.5-5. I have seen many people here with a higher TSH but average fT3 and fT4 . But for me , my fT3 and fT4 are tanked to low normal of lab ranges even with TSH of 3.0.
With your rich experience , I wanted to ask if there is a formula of relatibility between TSH and levo dose ?
Like I've seen people with TSH in referance range 3-5 going with 25mcg levo . Above 5 usually start with 5.0.
Just a pattern I noticed , nothing scientific about it .
I shall begin with 50 mcg in couple of hours . Thanks a lot
With your rich experience , I wanted to ask if there is a formula of relatibility between TSH and levo dose ?
No, I really don't think there is. For one thing, not all pituitaries are reliable, and secondly the feed-back loop is compromised when you're on thyroid hormone replacement. Best to just ignore the TSH unless it goes high. FT3 is the most important number.
When I started 25mcg it was like a lightening bolt. I literally couldn't sit down for 2 weeks. Then I crashed right down at 3 weeks. Didn't have trouble sleeping though. I'd give it a fair try (6weeks)
The anxiety is caused by low dose he started you on. He shouldve given you 50mcg. Feeling anxious when undermedicated is often because the adrenal kick out high levels to try to compensate for the low thyroid levels....this makes you feel anxious. You are definately not OVER medicated.......under medicated yes. You need a higher dose to start with. A TSH level of 9 is very high so dont understand his pussy footing around!!
Hello, I’ve had hypothyroidism for more than 30 years. It’s not pleasant is it? There’s a very fine line for getting your dosage right. For many years I was taking 125mcg and was asymptomatic. About 3 years ago I started losing weight - quite a bit - it was great! However my levels had gone a bit wacko. I noticed a faster heartbeat . I had more tests and my dose was reduced to 75mcg. I steadily gained weight and the I was fatigued and not sleeping. I was told my levels on the new dose were fine. I wasn’t convinced. I had further tests and I’m now on 100mcg. I do feel better. I’ve found we have to advocate for ourselves and insist on regular testing. If your heart rate is elevated on such a tiny dose - 25mcg - it may need reducing more. It’s sometimes difficult but your doctor has to treat you holistically and not rely entirely on numbers. As with everything you need to be tested regularly until you are on a dose that makes you asymptotic . Oh hope this helps.
Hi, I was sub clinical for a few years I tried Levothyroxine and felt very unwell , my heart racing and dizzy so came off them.As I entered the menopause I was gaining weight and feeling cold etc. So tried again very slowly. The doctors worry if your heart races like mine as can do damage and cause heart attacks. I had 25g every other day and now every day. I found this gradual way really helped me and relieved symptoms no heart racing ! I have no numbers to hand but I felt needed thyroxine this time. I actually use Teva as lactose intolerant.
I would go back to doctor as heart racing is not good and they take heart problems seriously.
Although l know sometimes it takes a few weeks to settle down for some I had to have ECG as felt so awful. Hope you get some answers. This small dose has really helped me to feel more normal and lose weight that I gained very quickly.
Meant 25mcg
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Once I was started on 25mcg of levo I began to feel slightly better, my second month I felt worse but didn’t put it down to the change in make. First packet was Mercury Pharma second was Teva, so I try hard to get Mercury now, Teva and Northstar give me tremendous headaches and I feel unsettled with brain fog and the full compliment of other side effects. I’m still under medicated in my own opinion at 75mcg but trying to convince the GPs of this is becoming a full time job, so hang on in there and ride the wave, I also get my own bloods done as I’ve noticed that my last nhs bloods have only tested my Tsh.
Slightly off-topic but I've never been able to understand how the medical profession can diagnose someone as sub-clinically hypothyroid when they are presenting with various hypo symptoms. Sub-clinical is supposed to relate to or denote a disease which is not severe enough to present definite or readily observable symptoms. Apparently in the case of hypothyroidism, the meaning of "sub-clinical" is totally changed - instead it is based on the blood tests, especially TSH and the patient's symptoms are dismissed as irrelevant.
Hi Once you’ve got your vitamin and thyroid levels sorted ... just be aware another area which all women go through is perimenopause & menopause and thyroid can be real nuisance at this time.
They state average age of perimenopause is 45 and menopause 51 but this is just average I’m 55 and still perimenopausal 🙄
And certainly thyroid conditions play havoc in this area.
So perimenopause also could be possible and anxiety and brain fog is a certainly for some an indication.
Not the more common hot flushes, I’ve never had those but have had night sweats on and off.
Don’t be fobbed off with drugs for anxiety and depression without ruling this area out, as they won’t help if it’s perimenopausal symptoms... it’s oestrogen progesterone & testosterone which are all over the place.
Check out Dr Louise Newson website & social media pages for best evidence based information on this area she has a Balance app which you can keep track and note your symptoms and then print out and show your GP.
NICE guidelines state over 45s do not require blood tests to diagnose perimenopause it’s based on symptoms alone, although some may look at bloods, it can only be for dosage guidance purposes not diagnosis.