Hi I am a 37 year old married man with 3 children and happy with my life apart from my illness I am due another blood test soon and not had 1 since November but not for the one of trying as I feel I don’t get taken seriously or get pushed off even when explaining I don’t feel well. I have been diagnosed a number of years but not really improved. I’ve always been super fit but since my diagnosis it’s been so frustrating especially with side effects like the following:-
Tiredness
Aching
Weight gain
Constipation
Bloating
Dizziness
And many more by don’t want to feel like I’m boring everyone.
I had my last test in November and these were my results:-
T4 levels - 7 pmol/L
TSH levels - 45 miu/L
Any information and advice would be greatly welcome and apologies if I am going on but very frustrating and don’t feel well and feel no one fully understands me
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Hypohol84
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Hi I am on 200 mg of levothyroxine but the amount of times they have either took my medication down or put my medication up. I used to be so fit but at 37 the amount of side effects and times I feel down is ridiculous. I don’t want to feel like i am going on but it’s very frustrating and I only know a few women that have it but no men so it’s hard to talk to people about it and feel they don’t understand. If you have any advice that would be great in your opinion what do my test results look like thanks.
Hi, sorry to hear you're feeling so unwell. Please change your doctor if you're not being treated correctly! Your TSH is crazy, you should be between 1-4. Also other tests must be done like vit D, B12, Ferritin, etc Are you taking your medication correctly? This is something none of the doctors have told me but you must take this as first thing in the morning only with water before you have any food of coffee. Wait at least 30 minutes before you eat. You should avoid coffee all together. Also read about correct diet. It's strange that with 200mcg levo you have such hight TSH. Good luck!
Try Tirosint—it’s a new generation replacement and is very easily absorbed so you might need to start at lower dose than the one you are taking now. Good luck!!
Not usually available in the United Kingdom. Though it is available in the USA and several EU countries.
I have just been adding some details about Tirosint (which is branded under several names) and Tirosint Sol to my document:
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
It is technically possible but is a "special" - with time delays and a massive increase in price. Any individual's chances of getting it are pretty close to zero.
Can you please add the reference ranges for your results (they vary from lab to lab).
How much Levo are you taking?
Do you take it every day, one hour before or 2 hours after food, with water only and water only for one hour each side?
Do you take any other medication or supplements?
Your TSH tells us that you were very undermedicated at the time of that test. Did your GP raise your dose of Levo after those results?
You need another test now so if not already booked please contact your surgery and book one for the earliest possible time, no later than 9am. Have nothing to eat or drink except water before the test. Take last dose of Levo 24 hours before the test, take that day's Levo after the test.
Also ask if you can have the following nutrients tested, these are often low in Hypothyroid patients and need to be optimal for thyroid hormone to work properly :
Hi thank you for your advice in regards to my ranges they are for my T4 (12-24) mine is 7 and my TSH (0.3-4.2) mine is 45. I am on 200micrograms of levothroxine. I take it exactly how you stated and I am on sertraline for depression. I am booked in for blood test for 08:00am tomorrow morning
Were you given an increase in your dose of Levo after those results?
Your TSH was a lot higher than many people upon diagnosis and your FT4 was below range so there should have been no doubt in yourGP's mind that you needed several dose increases just to bring your results into range - increases should be in increments of 25mcg, no more, with retesting 6-8 weeks after each increase.
I am on sertraline for depression
I was on sertraline before I got diagnosed as I have suffered for years before being diagnosed with depression
Depression is a symptom of hypothyroidism. It's very likely that you were hypothyroid at the time you were given the diagnosis of depression and they just didn't look any further. It's a massive cop out and happens all to often.
Once you are optimally medicated you may find that you can gradually come off the sertraline but I know that it's not an easy process and has to be done slowly and carefully. Shame on your GP for putting you through this when you might never had needed to go on sertraline originally.
Because taking sertraline and levothyroxine concurrently can reduce serum levels of thyroxine, you need to take them as far away from each other as possible. It's common to need more Levo when taking sertraline.
I am booked in for blood test for 08:00am tomorrow morning
OK, that's a good time. Remember nothing to eat or drink except water before the test. Also do not take tomorrow's Levo before the test, take it afterwards, assuming that you take it in the morning.
Thyroid tests come back pretty quickly so give it a couple of days then arrange to get your results.
If your surgery offers online access then fine, you can get the results and ranges from there. If not then just ask the receptionist (never the doctor, they don't like it!) for a print out of your results, they will need to get a doctor's permission, a doctor has to have seen your results first, and then arrange to pick up your print out or have it sent in an email or however they wish to do it.
In the UK we are legally entitled to our results so don't let them fob you off.
Post your new results, with the reference ranges, on the forum for us to comment.
If possible, try and get the nurse to add those nutrient tests, if she can't then maybe ask if she can pass it by a doctor and do them there and then rather than you have to go back.
Great advice thanks for this and the support after my last blood test they just said we will put you up from 175 to 200 and then they said take 175 one day and 200 the next and rotate round
I think your GP has been extremely negligent. After any dose change we should be retested 6-8 weeks later. With your results as they were then your GP would know that small increase would no way bring your levels into range let alone optimally medicate you.
Can you see a different GP because this one has done you no favours?
When we see your new results we can give you some guidance on how to go forward. It must be very difficult for you with the symptoms of hypothyroidism you must be experiencing plus your depression, but stick with us and we will hopefully be able to put you on the right road to improvement; however, I think it will be a long road if your results are still as bad as they were before.
Are you able to work? With your results I wouldn't even be able to get out of bed!
You need a doctor who understands how best to treat someone who is hypothyroid.
Unfortunately that doesn't come from GPs etc, so many members on this forum are more knowledgeable that the majority of GPs (I know for a fact that mine knows absolutely nothing about how best to treat patients who're hypo or what the blood test results reveal).
I think that you really haven't had a Full Thyroid Function Test which is TSH, T4 , T3, Free T4 and Free T3. Also need to check B12, Vit D, iron, ferritin and folate.
You are another hypo patient whose GP knows virtually nothing, neither about how to get the best blood test results, nor how to interpret them.
As you are aware more female than male develop a dysfunctional thyroid gland but members are very knowledgeable and will help/advise you to improve your health.
Levothyroxine is a synthetic T4 and it is supposed to convert to T3. T4 being an inactive hormone and T3 (liothyronine) being the Active Thyroid Hormone which runs our whole metabolism from head to toe.
Rather than prescribe thyroid hormones they will diagnose 'symptoms' as something unconnected to a dysfunctional thyroid gland. Ignorance is not bliss - but we are at the brunt of it at times. I had to diagnose myself and TSH was 100 by then.
You can copy and paste your above history into your personal page so that members, in future, can read your journey before being diagnosed.
You can click on my name and read my hypo history.
Your health can improve and there are very knowledgeable members who can help restore your health. The fact is that GPs and Endocrinologists seem to be less knowledgeable than our past doctors/endos as they knew all clinical symptoms and we were diagnosed by them. There were no blood tests then.
Nowadays - if they do take a blood test for thyroid hormones - few can really interpret the results.
Can I just ask. Why do you have to have the blood test before 9am.I had mine taken Fri and the only appt they had was 11am. I didn't take my levo beforehand but sis have a tea with milk at 8am. Will that make a difference?
When we are looking for a diagnosis of hypothyroidism, or when we are looking for an increase in dose of Levo or to avoid a reduction in dose, we need the highest possible TSH.
TSH is highest between midnight and 3am, then dips then from 8am to 9am climbs again then falls during the day. See first graph here:
As doctors tend to adjust dose on TSH only, rather than look at the actual thyroid hormones (FT4 and FT3) then for the reasons above we advise the blood draw should be no later than 9am.
Tea contains caffeine and some studies say that caffeine can affect TSH, hence the advice to drink water only before the test. Whether a cup of tea 3 hours before the test will make a difference I can't say but the time of your test will.
Thank you so much, I understand now. The trouble is they only want to test once a year so I may pay and have private tests done. I will be interested to see what the results are. Last time my TSH was withing range something like 1.42 but I still feel rotten. Mine dont even check T4 or any vitamins although I take, selenium, ferretin, Vit 12 complex, Vit D with K2, and magnesium. If I get them all done privately should I stop taking my vits?
I take, selenium, ferretin, Vit 12 complex, Vit D with K2, and magnesium. If I get them all done privately should I stop taking my vits?
You shouldn't really be taking anything anything unless you know that you need them and if so then it's important to take an appropriate dose.
Vit D is fat soluble so any excess is stored rather than excreted so an build up to toxic levels.
Too much iron is as bad as too little so before supplementing we need to have an iron panel to test serum iron and transferrin saturation as well as Ferritin. We can have good iron levels but poor Ferritin.
If you get a private test you should stop B Complex 3-7 days before and iron supplement 7 days before. Iron tests require a 12 hour fast, water only during that time.
Suggest you do some background reading, ask your GP to medicate you based on your vastly elevated TSH, request a full thyroid test or order a test kit then come back ( as often as you like) with that info and members will help.
It is possible that all you need is replacement T4/ levothyroxine but a new set of labs will confirm that....or show more.
You have come to the best place for thyroid advice!
Hi thank you for your advice in regards to my ranges they are for my T4 (12-24) mine is 7 and my TSH (0.3-4.2) mine is 45. I am on 200micrograms of levothroxine. I am booked in for blood test for 08:00am tomorrow morning thanks for the advice and I never get asked how I’m feeling I just feel that people don’t understand and think I’m making all of this up just to moan.
Go to this page from the ThyroidUK website - it lets you download a tick-box version of hypothyroid signs and symptoms. Print it out - (2 pages) - fill it in for all that applies to you and take it when you go for that blood test - hopefully they'll begin to take notice.
Didn't realise you were taking Sertraline, it was prescribed to me before levo to help Fibro pain. Took me ages to get it out of my system, suggest you very slowly cut it out
Depression and anxiety are significant symptoms of hypothyroidism!
Drug Bank states
"The therapeutic efficacy of Levothyroxine can be decreased when used in combination with Sertraline."
Your FT4 is well below the ref range....what on earth is your GP thinking! He sounds clueless and probably trying to hide his ignorance by brushing your concerns aside. Sorry, I'm a 76 year old cynic regarding much of NHS thyroid care...
Your TSH should be much lower on 200mcg levo, it sounds as if the levo isn't reaching your blood/serum from the stomach.
You need to test thyroid antibodies for Hashimoto's disease which may affect this.
Post your new results, hopefully they will help move things forward....we are all in this mess together.
I have a complex thyroid problem and without this forum where people with similar problems exist I would probably feel that I was losing the plot! Here, I became confident that the problem is real and I've learned about it and how to deal with it.
Sertraline and thyroxine don't mix! That may be the source of the problem. Anxiety and depression may also be thyroid related and disappear when you are properly and effectively medicated.
Asking Setraline means that you may need a slightly higher dose of levothyroxine and it should be taken hours apart from levo. But they are not incompatible.
Don't change anything until you get a Full Thyroid Blood Test - even privately as GP may not do all that's required.
I think others will also have stated:-
The earliest blood draw (make sure you're well -hydrated a couple of days before) and make appointment weeks ahead.
It is a fasting test but you can drink water. If taking thyroid hormones, do not take them until after the blood test. Also request, TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.
Is there any history of thyroId problems in your family?If there is ask for an ultra sound or CT. you may have autoimmune thyroiditis.
My TSH did that trying to force a dying thyroid to respond.
It is much more common in men, whereas most women have Hashimoto thyroiditis where the thyroid stays the same volume but developed inactive thyroid cells.
Bellaowl . just a clarification to avoid any confusion.. "you may have autoimmune thyroiditis.
My TSH did that trying to force a dying thyroid to respond.
It is much more common in men, whereas most women have Hashimoto thyroiditis where the thyroid stays the same volume but developed inactive thyroid cells."
I think perhaps you meant to say "Autoimmune Atrophic thyroiditis" ,where the thyroid actually shrinks away, (and if 'blocking' TRab antibodies are involved , these patients may also get unexpectedly high TSH readings )
The term 'Autoimmune thyroiditis' actually describes both 'Hashimoto's thyroiditis' and 'Ord's thyroiditis'
In Hashimoto's there hypothyroidism and a goitre (enlarged thyroid), and in Ord's ,there is hypothyroidism but no goitre.
In Hashimoto's the thyroid tissue is gradually damaged and becomes inactive, but it doesn't physically shrink away to nothing.
Hypohol84
Hi there , It's hard to be precise about these differences in definition, so don't worry about them at the moment, as whatever the precise definition of your case, the treatment is the same ... replace the thyroid hormone T4 (T3 ) to a level where patient feels better, and keep TSH in range preferably under 2 ,or lower if that is what is needed to feel well )
Historically, not much research attention has been given to them , and most of us never get a precise diagnosis of which form we have , which is a shame because they are interesting, and knowing more could help explain some of the oddities we see in thyroid results .. like for example, your surprisingly high TSH despite being on a reasonable sized dose of Levo.
Seeing your latest results from taking 200mcg ? (or is it 200/175 alternate ? ) will be interesting....
Don't feel like you are moaning about nothing just because if seems like no-one out there 'gets it' ......
'not having enough thyroid hormone' affects nearly every cell and system in the body. If there's not enough and / or it's swinging around wildly then lots of things both body and mind, will simply not work properly.
Just because hypothyroidism doesn't land you in A& E, everyone thinks it not a big problem , but it is ... it's a very big problem... it s'; just a really slow ,boring , uneventful big problem ..... which probably explains why Doctors /Endocrinologists don't seem very interested in it.
But as others have said .. those November results were EXTREMELY hypothyroid... like results you'd expect to see in someone who'd just been diagnosed but hadn't been treated yet (and was probably feeling bloody awful)
Your November results were so bad with fT4 so far under range and TSH so unexpectedly high ,it seems pretty careless of GP that you haven't had a retest since then. When you say they first told you 200 then changed it to 200/175 alternate... did they not do a blood test to decide on this adjustment ?
This 100%. Depression likely to be thyroid. Just because you didn’t necessarily have other ‘thyroid’ symptoms don’t write it off as unrelated.
We all well understand here! You must be feeling dreadful with those results. I wouldn't be able to stand with results like that.
If your doctor was happy to leave you with a below range T4 and sky high TSH I'd suggest you switch doctor and contemplate making a complain about the current one.
Yeah I look like I’m pregnant and it makes me feel so low especially after being very ripped for year and very fit. Bloated tired can’t be bothered at times it’s just never ending. All they seem to do is keep putting my medication up and down by 25 and that’s it it’s like talking to a brick wall at times
Ever thought of going private? I know not everyone can but it’s often one of the best investments especially if you can get bloods done on the NHS and take with you to the private Endo.
Wired123 has a really good point. If you can go private, it’s worth it. Thyroid UK has a list of docs on request. I finally got a diagnosis after years and years of being told ‘I’m fine!’
I noticed that with myself they take the same amount of medication and rearrange it as if that will make a difference…. Thats the definition of insanity doing the same thing over and over expecting a different result… time for new doctor or request endo appointment.
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
Apart from Sertraline, are you taking any other medications or vitamin supplements?
Essential to regularly retest vitamin D, folate, ferritin and B12
When were these last tested
EXACTLY what vitamin supplements are you currently taking
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
To have a TSH of 45 on 175mcg levothyroxine suggests very poor absorption and/or vitamin deficiencies and/or lactose intolerance and/or gluten intolerance
Have you had coeliac blood test done
Do you know if you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
Hi thanks for your response I’m lot sure on the brand of levothyroxine. I take my medication first thing in the morning on a empty stomach and not eating anything like you said. I work days and nights but try to stick to the same times I have also been advices to change at times. I take sertraline but at separate times. I don’t take any other supplements and I regards to other things to get tested on I have just had my blood test today so I have asked the nurse about getting tested for more things in future and will Lao ask my doctors. I do feel that I could be intolerant to other foods but don’t know how you can get tested or what foods I am as I feel very bloated a lot of the time in regards to Hashimoto disease I have heard other people say that and will look into this thanks for your advice
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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?
Which brand of levothyroxine are you currently taking
What vitamin supplements are you currently taking?
I’d be feeling it was time to take matters into my own hands. Slowly taper off the sertraline as it’s affecting absorption of the Levo… get your tsh t4 and T3 tested privately so you know your T3 really (it’s that that you want high in range)… start taking an extra 25 more Levo or source some T3 online and add 10 of that in the mix… stop drinking coffee and keep calcium rich food and drinks well away from your meds… visit an Endocrinologist from the thyroid U.K. list… lots of things! You can get better. But your doc has been keeping you sick. You need to focus on getting your T3 up and your tsh well down. You’ll get there but I’d start making changes soon.
I was put on pyrodoxine vitamin B6 when my thyroid began to fail - used for depression.
I know most of the people on here use B complex but pyrodoxine has the advantage of being prescribable and specifically treats depression, at least in women.
I would definitely change GP and in the meantime reach out to Dionne from Thyroid UK who is able to provide a list of thyroid-friendly specialists in the UK - NHS and private.
It can be helpful to keep a diary of symptoms, alongside the food and drink you have in the event where there are any links until you get better. The diary is useful since you can present it to a medical professional and always bring a notebook to your GP/specialist meetings.
Read up more about the condition and what you can do with diet, exercise and lifestyle (where applicable). Cut out gluten once you've done a coeliac test, sometimes dairy is a culprit. Stick to safe foods and then gradually reintroduce foods, IBS-style. Look at your supplements and nutrients in your blood tests - deficiencies in iron/ferritin, vitamins D and B12 and folate sometimes exacerbate the symptoms. (In my case, it helped with mood, achy joints and energy).
I would also consider preparing a complaint because your GP shouldn't be practicing without having management reviewing their behaviour. Patients have rights and your health is more important than anything. This is nothing urgent but I would l leave it until feeling somewhat better. You are also legally entitled to access your test results.
I was on sertraline for many years before IBS took over my life, which led to wrong diagnoses (incl. endometriosis) and a point where my bone marrow stopped producing new red blood cells. I've spent my entire 20s - one's prime - struggling to get taken seriously by medical professionals - until I came to this forum!
You'll be back on your feet! The toughest hurdle is to recognise that something is wrong, the rest will come along. Don't forget to get enough sleep and pace yourself - it's a balance that can be tricky sometimes for us 30-somethings. Good luck and keep us posted
TSH is 45 … how are you functioning and anti-depressants can interfere with thyroid meds dumb doctors never tell you this and you need a new doctor.. wow
Hi. Just a thought if you’re going to try a different GP. Doctors in my practice all specialise in an area. None of them specialise in thyroid or autoimmune conditions, but I now go to one who specialises in women’s health. I know you’re a man, but far more women suffer with this type of thing, and my new dr does seem far more knowledgeable. She has been willing to let me try higher doses, then asks how I’m feeling, rather than decide by testing alone. It may be an option if your choices are limited! Good luck.
When I was diagnosed about 15 years ago I was told to go to the doctor who specialised in thyroid. Well, excuse me but 😂😂😂 she knew next to nothing about. I didn’t see her again. Jo xx
Welcome to our forum. That's an awful lot of Levothyroxine to be medicating and still be under-range.
You have received lots of good replies but not sure if anyone has pointed out the negative effects Sertraline (which is an SSRI) can have on thyroxine, and even taking it away from Levo won't stop the effects.
You might find my answer in this post interesting (about half way down).
Thanks I should get my results back this week very confused with a lot of info they feed me but have had lots of advice given to me I would love to know what my levels are now as I keep going lightheaded
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