I’ve just called the surgery and they are saying the TSH level is now 2.63 and Normal so I’m on the right dose and it doesn’t need increasing even though I feel like I’m back at the start!
They haven’t got any results for T4 the only thing on the test result was TSH.
I’m really upset and concerned there’s something sinister going on! Please can anyone advise 😂
Rosserk
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
Some information you may find useful to discuss with your doctor - from thyroiduk.org/tuk/about_the... > Treatment Options:
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Available on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.
Also -
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.
You should say that you have taken advice from NHS Choice's recommended source of information regarding thyroid disorders (which is Thyroid UK), don't mention the internet or the forum.
Hi thank you for the quick response. I’m beside myself and don’t feel I’m ever going to get any better. I also think I might have messed up th results because there were a couple of days when I took two levothyroxin be abuse I was so desperate.
I definitely won’t do it again because I now realise it was stupid but I really am in a state and really not sure how much more I can take of feeling so poorly. Now I will need to wait another 8 weeks at least before they even consider testing me again if at all! 😂
I know, it's not easy, and we do feel desperate at times when feeling so poorly. Do you have a supportive partner/family, hopefully you are not alone in this and they help out.
You can always do private fingerprick blood tests you know, they're not all that expensive. If just checking TSH, FT4 and FT3 it can be done with Medichecks medichecks.com/thyroid-func... and they often have that test discounted to £29 on Thyroid Thursdays. Your GP wont necessarily accept the results but you would know, and with the Dr Toft article you can hopefully persuade your GP to increase your dose. If not then there is the option to self source and add extra Levo, some of us have had to take charge of our own health because doctors don't seem to know how to treat hypothyroidism properly.
SeeSideSusie, thanks again for the response
Yes I have a very supportive husband, but he’s as much in the dark as me.
I’m going to stick to the medication they’ve prescribed and not take any additional tablets. Then I’m going to beg the doctor to repeat the test on the 14th when I have my appointment. If she refuses I will look to getting a private test done.
Seasidesusie what do ask for in the email request please?
A copy of Dr Toft's Pulse magazine article.
Rosserk,
You are undermedicated to have TSH 2.63 even though it is within normal range. Where in range the result is matters. Ask for a dose increase because most people need TSH lower to feel well. I think it is remiss of your practice not to check FT4. I suspect FT4 is still below range. It seems inconceivable that 25mcg will raise FT4 from 8.8 to 17-22 where it needs to be.
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_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
You should also note that symptoms can lag behind good biochemstry by several months so it doesn't mean anything sinister is going on.
Thank you Clutter your response has calmed me down a little. I have an appointment on the 14th March so might get my doctor to repeat the test and obtain T4.
It makes absolutely no sense that I’m feeling so poorly yet they are telling me I’m normal and shouldn’t be having a problem.
Just read your other post. Are you only on 25mcg?
This is only half standard starter dose. You need an increase. See a different GP if necessary
Nice guidelines saying how to initiate and increase
cks.nice.org.uk/hypothyroid...
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT4 and FT3 plus vitamins
Private tests are available
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
There's 15% off tests today with Medichecks
Slow dragon thank you. I’m defo going to take one of the tests but I’m not sure it’s worth doing straight away. I will take the correct medication and arrange a test before my appointment.
I also need to tell my doctor I doubled my dose on a couple of days when she shouldn’t have. I’m still on 25mg which is where I started and for the first few weeks made me feel so much better but for the last few weeks I’ve been feeling really poorly again and the chest pains and profuse sweating/ temperature swings are back with a vengeance!
as others say you are probably undermedicated - I had TSH of 2.63 or thereabouts on 50mcg at Christmas - I was better than I was on 25mcg but really wasn't feeling right- did some conservation work and that was nigh on impossible so unilaterally upped to 75mcg that week - which was late Jan - and feel as if I am much closer to normal - not quite there but getting there. I really hate the way GPs just look at test results and say it is okay without actually talking to you and asking how you feel - which was my experience with the result. I'm lucky to have been prescribed 25mcg tablets so can change things in small increments ... though not something I'd really encourage - but seems inevitable where GPs won't talk to or see patients before making decisions when trying to normalise thyroid - they may think they know what they are doing but they obviously don't.
Gambit62 thanks for the response.
Absolutely spot on with your comments about making decisions without discussing with patient. I can’t believe I have to wait another two weeks before I get to see my doctor to discuss. By then it will be 10 weeks since my diagnosis and no one has told me anything other than take these tablets and request a blood test in 8 weeks!
When I got the results yesterday the receptionist said you are on the final dose and there’s no request for further blood tests. So as far as my surgery is concerned I am on the right medication and there’s no need for further testing.
Help! In range but feel terrible 
What’s going on?
TSH in normal range but...
Feeling awful but bloods have come back normal
Blood tests are in, what’s going on??
