TSH 3.06, free T4 14.4, take 150 thyroxine per ... - Thyroid UK
TSH 3.06, free T4 14.4, take 150 thyroxine per day. Dr says this is optimal - is it?
It is only optimal if you feel well on that dose, if not the answer is NO! You need to get your TSH around 1 or lower and your FT4 at the top of the range and if you still don't feel well, then they should test your FT3 levels
No. Unless the ranges are very unusual. Need lab ranges (the numbers in brackets to be sure) TSH too high in most UK ranges and T4 too low. How do you feel?
If you email Louise she can send you the artils be Dt TOft (ex-pres Brtish Thyroid Association) which explains that TSH should usually be under 1 and T4 near top of range.
TSH 3.06 mu/l (0.34-5.6)
free T4 14.4 pmol.L (7.9-20)
Feel shit - think have Lupus - below is my original post on here from Lupus UK - very long and boring sorry, but about to lose husband/family etc so there'll no be much point in anything after that so trying to see if anyone here has a better idea that could help me
Feel terrible – can anyone advise/been through similar? Felt terrible on&off for years. GP usually says I’m overtired or doing too much. Felt at my worst this year with the least amount to do I have ever had compared to previous 10 years. Will try to keep it short but please read and see if you have any ideas;
•Chronic fatigue – sometimes sleeping 14/24 hours, nodding off in car, on sofa etc. Grumpy and tired 24/7, just want to sleep constantly.
•General malaise, every day feels like the day before you come down with flu.
•Hair falling out – clots the plughole and brush with each use. No bald patches yet but massive overall thinning.
•Temperature issues – sometimes wildly hot/cold and unable to warm up/cool down. Usually cold.
•Sore throat – comes and goes. Usually comes at teatime and gone when I wake the next day.
•Pain in shoulders and hips. Joints stiff, can’t touch my toes or raise arms over head. Pain along bottom of spine at times agonising. Worse in mornings.
•Dry eyes – told c.2006 I have ‘Dry Eye Syndrome’ and given daytime and nightime drops. Told to surgically tape eyes closed when sleeping to prevent drying out. Sometimes wake up just to put in more drops as eyes so dry.
•Thirsty – blood glucose normal. Carry a drink everywhere, get dried out coughing fits a lot. Wake in night with dry mouth. Use loads of chapsticks, permanent angular chelitis in winter.
•Nose coldsores/mouth ulcers. Usually one or both at all times.
•Facial rash – red raised rash on cheeks and sometimes chin, not spots, just lumpy and red. Variously called acne/rosacea by GP. Was prescribed Zyneryt, just made skin red and flaky instead.
•Breathlessness/problems expanding chest. Feel like am fighting against a bear hug when I inhale deeply. Dr said c.2008 Tietze's sndrome
•Recurrent thrush – at least once every 3months.
•Photosensitivity – am fair so usually wear factor 50 every day. Must wear wide brimmed hat and seek shade at all times to avoid rashes/lethargy from sun exposure.
Visited Dr in Jan as part of New Year’s resolution to sort health out. ESR 94, CRP 17.
Referred to Endocrinology as have underactive thyroid and sibling with Addison’s. Do not have Addisons and thyroid meds now apparently at optimum levels.
ANA negative, C3 high, C4 normal. Parietal cell antibodies detected but do not have pernicious anaemia. Rheumatoid factor low, no pain in hands/feet.
Felt like death until June. In May ESR dropped from 94 to 27. Doctors lost interest. Felt great for 3 weeks at start of June, was amazing to feel normal in every way and not a bit poorly.
Last week woke up tired and achy Mon/Tues, ulcers and sores returned Weds, back was agony on Thurs and ESR was up to 71, CRP 24. Dr prescribed anti-inflammatory and painkillers. Feel awful again, skin crap, tired, can’t bend forwards etc.
Waiting to see rheumatologist. Awaiting results of ENA panel too.
Any ideas? Am 30 and female. 3 children 9,7,4 – no pregnancy issues, symptoms all vanished each time.
Personally think I have SLE with Sjogrens but GP laughed in my face when I asked about it.
Ancilla,
You are undermedicated. Increase your Levothyroxine by 25mcg and have another thyroid function test in 4/6 weeks. Your TSH should be just above or below 1.0, although some people need it lower around 0.05, or suppressed. to feel well.
If you have elevated thyroid peroxidase antibodies you have autoimmune thyroid disease (Hashimoto's) and it does predispose one to other autoimmune diseases like SLE and Sjogrens. Your dentist might be able to check for Sjogrens as your GP was so unhelpful but a blood test and lip biopsy may be necessary to confirm.
Check your ferritin, vitamin D, B12 and folate as I advised in your previous post as deficient/low levels can make you very unwell and levels need to be good for optimal thyroxine absorption and conversion of T4 to T3.
You might want to see a more clued up and empathetic GP at your practice or change surgery. The GP contract expects patients to be treated with respect and consideration. Laughing at a patient's concern for her health is neither.
Have made list of things I want done and am taking it to GP next week. &I'm going to say it like that - I want these tests done. I've been utterly incapacitated for all but three weeks of 2014 and at the age of 30 the doctors should be doing everything they can to remedy this. I'm aware there are much sicker people out there but quite frankly that isn't an ok thing to say to me to try and get me to go away and I shall tell the doctor that and if he is anything other than 100% helpful I will walk out of the consultation and lodge a complaint. Since I have no job anymore I have plenty of time on my hands to be as annoying as possible. I have spent 7 months being polite and waiting my turn and now I'm cross.
Sorry to rant
That's good. Stay cross - but polite. You have a right to be angry. But honestly, before you assume you have Lupus, get your thyroid optimally treated. It's astonishing what even a small increase in thyroxine can do for you if you've been chronically under treated for a long time. No word of a lie - your problems might disappear if your doctor takes your thyroid issues seriously. You need a TSH of less than 1.0. Ideally, your FT4 needs to be much higher in range, nearer 20. If you can persuade your numpty GP to test your FT3, that too needs to be high in range. Get your ferritin, B12 and Vit D tested. Insist! If any of those are low, you will feel lousy.
Rant away, Ancilla. It helps sometimes and we're here to listen. You may have more success getting the tests you want if you can explain why you think you need them. For instance: Euthyroid means resolution of clinical symptoms not just that bloods are within range, particularly high normal range. Most people need TSH 1.0 and some lower or suppressed. Although you were over medicated at 275mcg you think the reduction was too much and you are experiencing hypothyroid symptoms again to a debilitating degree. Vitamins and minerals are often deficient and low in hypoT patients so you would like them tested so deficiencies and low in range can be corrected with supplements. You would like TPOab tested because you will adopt a gluten-free diet if positive and because of the predisposition to other autoimmune diseases like Sjogrens and SLE which you would also like ruled out while you await your Rheumy appt.
I'm so glad you've posted on here 
you'll find so many of us are in the same situation with regards our doctors, and have all ranted at one time or another. So many of us self-treat too because of the lack of action by the health professionals.
With regards the contents of the medicine cabinet...I actually did that when mental health services wouldn't help me during the grip of a bipolar crisis - it didn't make a blind bit of difference, I just got discharged once the drugs were out of my system and left to breakdown catastrophically. In fact, I'm in the process of changing my GP because he was supposed to write a letter supporting my claim for state benefits, and instead described my psychiatric condition as 'low mood', which is a touch dismissive of this condition which has wrecked my life! Doctors seem to make a habit of trivialising things that are life-changing to us. I hope you give it to them with both barrels when you go armed with your list x
Sorry again, one more thing - if I ask to have my T3 checked along with T4 and TSH and antibodies, what else comes along with that? Is there another reading? Doc has always said the tests are just TSH and T4
Their hands are often tied by labs who insist that FT3 only needs testing if you're hyper rather than hypo thyroid. But FT3 will show if you're converting FT4 into FT3 (the active form of thyroid hormone).
email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft, (of the BTA). Highlight question 6 and send the whole article to your GP to read and learn. (from question 1 onwards) before your next appointment to discuss the matter of an increase in levo or the addition of T3.
No wonder you are quite unwell with a TSH as high as that whilst on medication. Your GP has no clue and believes as long as patient's TSH is 'in range' - job's done and disregards your continuing clinical symptoms which ideally should be eradicated on optimum medication.
When you have your next blood test have it as early as possible as TSH is highest then and don't take your medication in the morning, take it afterwards.
If these various doses of T4 don't work, why not try something else? If possible, T3. Many people add their own and more or less fire their GP. Your CRP is terribly high. In the states, 5 is the upper limit although you didn't give a range.
CRP range is up to 10 I think. It's the ESR that's really high - my ref range here states it should be less than 12 and it's 94.
Why do your doctors not see these as critical? And since they don't, it may be time to act on your own. No wonder you have so many symptoms.
They said I 'had a bug'. It's all rubbish. They were very concerned until so many tests came back negative, then they started saying I was making it all up. How I would cause my ESR to hit 94 I don't know.
Sometimes I want to take the contents of the medicine cabinet and present myself at A&E saying 'am I enough of an emergency yet?'
Ha, I would not hold my breath on that one.
I think we all realize now where the NHS is coming from regarding thyroid issues. Some go private but that is expensive. It may be simpler to figure your own dosage to treat your thyroid which you know is your main concern.
If T4 is not working for you, there are options.
If your ENA panel comes back as negative, along with your already negative ANA, you can be 99% sure you don't have SLE +sjogrens. I think one of the ENA tests is Anti-Ro which is the test for SJogrens.
Trouble is that hypothyroidism mimics so many other disorders when you are supposed to be "biochemically" euthyroid. As others have said, first try to get your TSH below 1 by increasing your thyroxine dose. If no better, other options are T3 only or trying a T3/T4 combo; there is also desiccated thyroid hormone; but that's really difficult to get prescribed in UK, but not that difficult to order on line and self-medicate with.
Have you been referred to an endocrine dept for a consult? Your GP should be onto this if you're feeling dreadfully ill, instead of being dismissive. There are other options for treatment, so don't just accept this from your GP; but it all seems to be such a battle to get anywhere! Good luck x
It was an endocrinologist who said my thyroid was fine like this.
ENA panel wanegative - maybe sero-negative Lupus? Not sure that really exists though?
Have you also had anti-ds-dna testing for SLE? If yes and this is
-ve, along with -ve ANA and ENA tests, then you can rule out SLE.
If your endocrinologist thinks TSH of 3 is fine, that's worrying .....how do you stand requesting another specialist opinion referral from your GP? Maybe a private endocrinologist consultation? Go to a big city teaching hospital or find out where their endos consult privately and get referred there.
BTW my mum has SLE, sjogrens+ APS but doesn't have to lubricate her eyes anywhere near as much as I do with plain old dry eye syndrome related to hypothyroidism. I was putting either lacrilube, viscotears or hypomellose into my sore eyes every 30mins until recently, and having to wear my reading glasses 24/7. I read a post on here about eye drops with hyaluronic acid in, can get it online or opticians, bit pricey @£10 but much better than anything else I've tried. Down to 3 drops daily now. But have also started on T3 only a fortnight ago, so it could be something to do with that also.
Rach67, thank you for the recommendation re hyaluronic acid eye drops. You might find this small research interesting, it tested the relative merits of hypotonic and isotonic hyaluronic eye drops. ncbi.nlm.nih.gov/pubmed/190...
Update – saw a consultant rheumatologist who diagnosed
‘a possible connective tissue disorder’
I still test negative for ANA and all other antibodies except Parietal Cell antibodies – my B12 is 372 so they say I do not (yet) have pernicious anaemia.
My symptoms I mentioned previously all still stand.
I am now taking Naproxen for the pain in my hips, back and shoulders. Also codeine when needed. Rheumatologist prescribed different eye drops and artificial saliva.
My TSH had gone up to 9! So my new GP (who is much nicer than the one before) upped my thyroid dose to 200 of levothyroxine. My thyroid peroxidase antibodies are positive – showing my underactive thyroid is an autoimmune issue brought on by birth of first baby. They still will not check my T3.
My vitamin D was apparently just inside the normal range.
ESR now 68 – in July was 71 with CRP 30. CRP now 20.
The way we have left it is that if I visit rheumatologist at end of Sept with all these symptoms persisting and still a ridiculous ESR he will treat me with hydroxychloroquine (as if I had SLE) and see what that does. But I see it takes 12 weeks to work so I will be ill like this till 2015 at least.
I’m still worried they have not done an MRI/CT scan and all these vague symptoms could be due to malignancy/cyst etc, as only real supporting bloodwork I have is the ESR of up to 95. GP said this wasn’t necessary as I am only 30 and they are pretty sure it’s some sort of autoimmune connective tissue disease.
Does anyone have an ideas or experiences that could help me? Thanks
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