I have tried googling this, as I'm sure the answer is out there (almost certainly on this forum elsewhere) but I'm getting very confused.
In background, I have hashimotos disease (although this is yet to be acknowledged by a doctor) and have had symptoms including fatigue for over 10 years.
I managed to get a doctor to agree to trial me on Levothyroxine in March. When I last posted I was asking why I still feel so ill when my TSH was finally 1.6.
I was advised to take the Dr Toft article to my doctor. She didn't look at it and handed it back to me, but did agree to see how I would feel if my TSH was below 1.
I had another blood test on Thursday and my TSH has come back as 0.05 (0.35-5.0). My T4 was tested and was 21.6 (9-24).
What does this mean? Am I now over-medicated? I just still feel so ill and am scared that the doctor will use this as proof that I should never have been on Levothyroxine in the first place.
Any advice would be greatly appreciated. Thanks.
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If you were over-medicated on levo, your FT4 would be over-range, because levo is T4. Levo is not TSH. If she tries to tell you that you're over-medicated, ask her what the range is for. There's no point in putting a range on the FT4 if you're just going to look at the TSH.
Even more to the point, you need to know what your FT3 is, because that's the active hormone - T4 is a storage hormone and has to convert to T3. So, the question she should be asking is not are you over-medicated on T4, but are you converting that T4 to T3? If you're not, and your FT3 is still well, then you cannot possibly be over-medicated, no matter what the TSH says. It's low T3 that makes you hypo and causes symptoms, not TSH.
The TSH is an extremely flawed test - even the man that invented it says that, and says it should not be used for dosing because the TSH is unreliable. And surely he knows what he's talking about better than anyone. Dosing by the TSH is the best way to embark on yoyo-dosing, and keeping the patient sick. And, the TSH varies throughout the day, so it depends what time you have your blood drawn, what the result is, so that's no way to decide on a dose. The FT3, on the other hand, which they accuse of being variable and unreliable, varies far less than the TSH. The FT4 doesn't vary at all, it's stable throughout the day.
So, do your research, know what you're talking about, and blind her with science!
Thank you so much for your information. I am trying so hard to get on top of everything I need to know but I feel like I can't retain information like I used to... I'm hoping that that's something that will be fixed once I'm better again!
I might need to pay for my own tests again (I used blue horizon to find out that my antibodies were high), but I'm only able to work part time at the moment so I'm saving up. I'll make sure FT3 is included.
I will ask my doctor to test FT3 but even getting my TSH tested has been a struggle enough. She says that getting it tested more often than every 3 months is too much. It's only because I'm facing to have blood tests every 4 weeks because I have low platelets that she agreed to run this test.
I did bring up the fact that TSH changes even throughout the day last time I saw her. She said that no research had ever been done about that so nobody can know if that's the case. So, even with my extremely limited knowledge I feel like I know more than my doctor, which is terrifying!
Thanks again for the information (and reassurance that I'm not necessarily over medicated). I'll get my FT3 tested, one way or another.
Difficulty retaining information, concentrating, remembering, etc. are hypo symptoms. So, that should improve when you get optimally treated - which you're obviously not at the moment.
She says that getting it tested more often than every 3 months is too much.
Too much for whom? Not the patient!
I did bring up the fact that TSH changes even throughout the day last time I saw her. She said that no research had ever been done about that so nobody can know if that's the case.
Well, either that's a blatant lie or she's really out of touch! I would suggest you post this as a new question, asking for links to research papers showing that this is the case - I'm pretty sure someone much have something on this - jimh111 , for example. I'm sure he's got graphs and stuff, Jim?
Your FT4 is not over range, so you are very unlikely over medicated. You need FT3 tested, along with vitamin levels
Just testing TSH and FT4 is completely inadequate
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Is this how you did the test?
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
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.
Are you on strictly gluten free diet as you have Hashimoto's?
I did get my blood test as early as possible, fasted and took my last dose 24 hours before after advice on here.
I will speak to my doctor about getting my T3 tested but I think it'll probably be a case of going to blue horizon. I just need to save up, because I'm working part time at the moment.
I have been doing gluten free, although finding it very hard. I'm hoping it'll get easier once I have the energy plan my meals a bit better!
I did manage to get some tests done when I saw a different doctor a couple of months ago.
Ferritin: 39ug/L (15-250)
Folate: 6.4 ug/L (2-17)
Serum B12: 331ng/L (200-900)
Vitamin D: 92 (75-200)
See thyroid peroxidase Ab conc: 247 out/mL (0-50)
I have managed to get my vitamin D up slowly from about 40, and am still taking a D3 dose of 20,000 a week. I also use a magnesium spray every night.
My antibodies are also considerably lower than they have been previously, so I'm hoping that's a good sign!
Any advice on these levels works be greatly appreciated! Thanks so much for all your help.
You may benefit from supplementing a good quality daily vitamin B complex, one with folate in not folic acid. Eg Igennus Super B complex (just one per day may be enough, full dose is two per day) or Jarrow B-right
Both folate and B12 are low, but not low enough for GP to recognise or prescribe
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Ferritin is on low side. Eating liver or liver pate just once a week is likely to help improve
Vitamin D is almost there. Once at around 100nmol, you will need to reduce to a maintenance dose. Trial and error what that dose might be, likely higher in winter than summer
That's very interesting. I don't actually feel worse on Levothyroxine, just no better (although my skin has cleared up).
Is T3 something I can get on the NHS?
I'm only dealing with my GP, not an endocrinologist, although I was referred to an endo a couple of years ago who seemed to know nothing about thyroids.
Hi, thanks for the information. I managed to get some of these tests run a couple of months ago, so they may not be totally up to date, but the results were:
Ferritin: 39ug/L (15-250)
Folate: 6.4 ug/L (2-17)
Serum B12: 331ng/L (200-900)
Vitamin D 92 (75-200)
I have managed to get my vitamin D up slowly from about 40, and am still taking a D3 dose of 20,000 a week. I also use a magnesium spray every night.
I was looking at getting a b12 spray, but I wasn't sure if I should hold off and save up to buy myself an active B12 test.
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