Ive just had my levothyroxine increased to 100mcg after my TSH went to 7.49. I feel a bit better but still struggling with low energy and low mood and just not feeling 'right'. After being retested, my medical practice texted me to say everything was now in range and to come back in a year for retesting. When I phoned to ask what the new TSH actually was I was told it was 3.94 (4.1). I don't feel this is optimal for me. My sister is a few years younger and has TSH of 0.8. I wondered if anyone has any kind of reference to a medical statement or paper that I could show to my doctor to persuade her of the benefit of having a low normal TSH for hypothyroid patients on levo? I really need something to back me up! I'm losing my patience with this practice! Many thanks
Been told everything's normal when it doesn't f... - Thyroid UK
Been told everything's normal when it doesn't feel it
'In Range' we do not want. We need the TSH at 1 or lower and FT4 and FT3 in the upper part of the ranges.
If you've just had an increase/decrease in levothyroxine you should have a blood test in six weeks to how your body is processing it. The aim is a TSH of 1 or lower not somewhere in the range as most doctors wrongly believe.
Doctors are so badly taught, they believe that once the TSH reaches somewhere in the range (up to 5 I think) instead of 1 or lower they don't increase dose.
thyroiduk.org.uk/tuk/thyroi...
Imagine going to any Specialist who deals with any other disease and the patients have to tell them they are wrong. The aim is to help us recover our health, not make it worse through ignorance.
It must seem so easy to treat us, i.e. prescribe levothyroxine and once the TSH is 'in range' they are on a sufficient dose. Not so - 1 or lower. Give your GP a copy of the following:
healthunlocked.com/thyroidu....
This is from TUK and we have to do a bit of reading so that we, the patient, know how to recover their health, despite the guidelines the doctors seems to follow.
thyroiduk.org.uk/tuk/testin...
All blood tests for thyroid hormones have to be at the earliest possible (TSH drops throughout the day). It should also be a fasting test (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. This helps keep the TSH at its highest.
Thank you so much Shaws for so much expertise, I've got an appointment today with the doctor and its such a boost to have the support and knowledge here to keep pushing on this in the face of some very obstinate GPs. You and all the administrators are doing such amazing and life changing work on this forum and I feel so grateful for what you do. x
I think you will find that all our members/Admins etc are on it due to not recovering or remaining undiagnosed. Some do not recover on levo and the fact that the Organisation made False Statements to withdraw NDT is beyond the pale, considering it has been in use, in several forms, since 1892 and still helps the recovery of people.
Of course, some do well and some don't. Just like levo it all depends on how our body reacts to replacements.
If you aren't a member of TUK - i.e. Lyn Mynott, Louise Roberts and Dionne and they work their socks off especially collating all the evidence that went before The Lords a few months ago about the withdrawal of T3. The Lords were shocked.
Bloods should be retested 6-8 weeks after each dose increase
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
Presumably, as your sister is also hypothyroid, you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies
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 if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Ask GP to test vitamins and antibodies
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
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.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
Many people find Levothyroxine brands are not interchangeable.
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.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
verywell.com/should-i-take-...
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Wow, thanks SlowDragon again for your incredible handle on this! Ive got a phone appointment today which I'm probably expected to cancel after my text message saying that everything is now normal and come back in a year! Like I said to Shaw, the work you do on this forum is amazing and without your support and knowledge lots of people wouldn't have the confidence to push on this and would be inadequately dosed and have a poor quality of life.
Ive been doing private tests through Medichecks which show I have antibodies in the very high range although the doctor only checks TSH. Yes, I now do the blood tests in the way you have suggested but at first I wasn't.
Thank you soooo much for the references, the Leeds Pathology one is an excellent one to quote! I really appreciate this.
Thanks so much again x
Yes I spent 24 years with Hashimoto’s on inadequate dose of levothyroxine, undiagnosed gluten intolerance, multiple vitamin deficiencies and DIO2 gene variation
Only through all fantastic information and help on this forum did I make full recovery
I went to the gp this week to be told my TSH was in range.... It was 3.65..... I have been on the site a while now and understand on levo it has to be 1 or below.....I told the Gp this.... She asked where I got my info from....if I had told her i had been on a forum or googled it i would have stood no chance, so I lied and told her another GP from the same surgery had given me this info and advice...... BOOM....put my Levo up like I know I needed.... starting to feel better already!!!! Be strong and don't give up xx
This study showed that having either raised or suppressed TSH is more likely to cause morbidity and mortality than having low or normal TSH. "Patients were categorized as having a suppressed TSH (≤0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (>4.0 mU/liter)." academic.oup.com/jcem/artic...
This is very interesting and important, thanks vocal. x
I wish I had your guts Chell, good for you! I'm so glad you got the increase. I pushed hard with my gp on the phone yesterday and I could hear how annoyed she was at me for not going with what she was saying (if you take any more you could become hyper) . Eventually she agreed to give me a 6 week trial of an extra 12.5 mcg. A little victory even though its not much. I wonder if you were prescribed an extra 25 or 12.5?
Thanks Chell, take care x
Good for you! Every little victory counts.
An extra 25mcg!! X
Hi.
Did your Dr check your T3 level as well as T4 and TSH. You need T3 checking. As if your T4 is in range but TSH still not this could be your T3 is too low and maybe converting poorly. This happened to me. Last year my T4 was high just in range and my TSH was high. GP just said increase Levothyroxine which I did as I was none the wiser. My T4 then went high over the range my TSH went very low as over medicated but my T3 was very low. By this time I collapsed and was in hospital. It’s taken numerous Drs and blood tests but now it’s been confirmed after a year of real suffering that I’m not converting very well T4 to T3. This week finally I will be starting on T3 medication and hope my symptoms fade in the coming weeks/months. Last year I had no idea about the importance of T3 until I read posts on this marvellous site. If the Drs done the T3 check a year ago I wouldn’t have had a year from hell. It’s probably all down to cost of T3 now on NHS. You can get it privately at a small charge like 30 euros for 100 tablets.
I hope you get your answers.
P
Im so sorry McPammy to hear of your year from hell. You've had such a terrible time, I really hope this week starting T3 is the turning point now. Yes I think price has a lot to do with this and also having a really broad 'normal' TSH range which is I think the biggest in the world. Think how many more Levo prescriptions there would be if UK was more like the US with a range up to 2.5 (or something like that)! Ill have to keep an eye somehow on T3. The thing is it's so expensive to keep having private tests. I think I need to be more assertive! You take care and I hope you finally feel better soon on the T3 .x
Yes be more assertive. I just asked for my T3 to be checked. Now it’s checked on NHS every time. My GP handwrites it in the blood form every time. Without it been checked you haven’t got the full picture.
Doctors rely too heavily on bloods and many will tell you that you’re within normal range and you don’t need anymore T4. But, if you have symptoms still, you should try more T4. There was a paper on this forum recently about Doctors being over-reliant on bloods / ranges and ignoring patients and their reported symptoms, so access that article if you can? X
Thanks HashiFedUp, (I love your name)
Ill try to find that paper thanks. Ive kept the follow up phone appointment to my blood test which I think the doctor expected me to cancel because they sent me a text message saying everything is fine now and come back in a year! I thought that just sums up the closed minded and obstinate nature of medical treatment for hypothyroidism. According to their range Im only 0.7 within it, grrrrrr! Thanks again x
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