Advice on my sister's blood results please?

[Revsie]

Hi, late last year my sister was diagnosed with under active thyroid and she is now on 50mg levothyroxine. She's just been for another blood test and her results have come back with T4 13 and TSH 4.39. Doctor said this was fine as TSH should be between 2 and 4.5? This isn't the range I have - I've got 0.4 - 5.0 on mine? Any advice appreciated please?

[shaws Administrator]

Wrong, Wrong, Wrong. How often do doctors make their patients more ill because they are misinformed.

I read yesterday that Research which was done in the USA and reported by Marina Zemskova, MD of the National Institute of Health at the 90th Annual Meeting of The Endocrine Society. They stated that researchers conducted a randomized, double blind, crossover study for at least 30 days and the target was a TSH >0.5 mU/L and <1.5mU/L so you will see that your friend's TSH is far too high. In the USA with a TSH of 3 you would be treated as hypo, whereas your friend IS being treated, obviously with a dose which is far too low. 50mcg is a starting dose and it is time the doctor treated her symptoms by adding some T3 to her T4.

nejm.org/doi/full/10.1056/N...

[Revsie in reply to shaws]

Thanks Shaws, I thought as much but prefer to get confirmation from you guys. I've done lots of reading on the subject but still don't feel quite knowledgeable enough to give advice.

[Hidden in reply to Revsie]

please be careful assuming that a very low TSH level is right for everyone. It is not. We are all different! See my fuller comment below

[Heloise in reply to Hidden]

I agree with what you have stated but you aren't saying that a TSH of 4.39 could be optimal for someone being treated with levo, are you? or are you? I think that would be rare.

But, of course, since she has sought some input, it doesn't mean she would pursue any change unless her sister actually felt unwell. And we know that would be futile anyway

[Hidden in reply to Heloise]

I am saying we are all different and it is important to find whatever TSH is right for us, whatever that may be and it may not be below 0.5

[shaws Administrator in reply to Revsie]

This is a link and cursor to the date November 28, 2003. Some links within may not work as it is an archived site:-

web.archive.org/web/2010103...

[Heloise]

I think being undertreated is hazardous. After twenty years, the effects are still with me. Find a GP who acknowledges the newer ranges that have been in use for a few years now. And who takes 50 mg and finds it acceptable?

[Revsie in reply to Heloise]

Yes I agree, I'm still fighting for correct medication and think I'm slowly getting there but still a long way to go yet? I've said maybe she needs to go back to the docs but also told her I was going on this site to ask for advice. Thanks for replying Heloise.

[Hidden]

TSH ranges do seem to vary as does the advice about what is right! Here is my opinion.

I take 50mcg of levo and my TSH is around 2. My TSH needs to be around 2 and I feel great. Any higher and I experience hypo symptoms and any lower and I start to have other problems - I know this as I've experienced and tracked several different TSH levels and how this effects me. A TSH of less than 0.5 is too low for me.

I'm very sensitive to small dose variations and taking 75mcg would give me problems. My TSH level would go too low and my T4 too high. I appear to convert well and I have no other health problems which could effect my thyroid issues.

Thyroid issues can be complex and one TSH result is not right for all. Advice to aim for one TSH result is not beneficial to anyone who is better at a different TSH result. We are all different.

I aim for consistency by having my blood test taken at the same time - early am and I take my levo after I have had my blood test.

What is important is to find the treatment and level that restores well-being for that individual, not getting a TSH figure which is incorrectly being proclaimed as being right for everyone.

How is your sister feeling? Best wishes to you and her.

Liza

[Revsie]

Thanks Liza, this is a very interesting point and I'll pass this on to her and let her make her own judgement as only she can decide which way she wants to go with her treatment. I know when she started taking levo a few months ago she immediately felt tons better than she did .......but is this just because she felt so bad to begin with and any improvement was a bonus?

I'll pass all the information on and also tell her to register with this site as it's certainly opened my eyes and I wouldn't be where I am now without it.

[Hidden in reply to Revsie]

Possibly... it took me a long time to get well - years of being thyroid deficient had taken it's toll. For me, it was important to take things slowly getting used to having adequate thyroxine in my body again. I agree that what's important is that she needs to get as much info as possible and this site has been helpful... but I do worry about this attitude that a very low TSH level is often promoted as being right for everyone... an increase in levo is not always the answer. We have to find what works for us and I wouldn't dream of saying that everyone should aim for TSH level of 2 - just because it right for me!

[puncturedbicycle in reply to Hidden]

I think the 'tsh below 1' thing can be easily misinterpreted. Really it means that if you are symptomatic you should be given the opportunity to find the place in the range where you feel good, whether it is under 1 or under 3.

Because overmedication is not a common complaint with UK docs (judging from posts here they're far more likely to keep you undermedicated) 'tsh under 1' is emphasised here as a possible way forward and sometimes comes across as a command that thou shalt keep your tsh under 1.

Really people just want the opportunity to see what it's like to take enough meds to allow them to feel well regardless of whether the tsh is under 1 or not. We all deserve that much!

[Hidden in reply to puncturedbicycle]

I understand and agree with 'the opportunity...' I have never said otherwise. I would never assume that just because I'm good at a certain level everyone else should aim for that level too. We should also have the opportunity to try different treatment - natural and T3. Unfortunately the 'below 1/below 0.5' is frequently presented as a command and this is not helpful. When it is given in a way which is open to misinterpretation don't you think it important that someone points out that sometimes 0.5 or 1 is too low for some?

[puncturedbicycle in reply to Hidden]

My intention was to agree that we all need to find the levels that support our health as individuals. Apologies if that's not how it came across.

[DizzLizzie in reply to Revsie]

Like your sister I am on 50 and feel so tired and sluggish - my results just in - say TSH 3.8 - borderline -speak to a doctor.

Called the surgery -the doctor has booked me a telephone appt for 2 weeks time to review my dose of Levo. I’m livid - so I have to wait 3 weeks for A new prescription -that’s if he thinks I need to up my dose. Didn’t do T4 as not needed he said.

Up until recently and before online results I accepted everything the doctor said and thought they had my best interests at heart but not so it would seem.

This last year or so, this site and the internet has changed how we understand our bodies And ability to take some control on what’s happening!

What is interesting for your sister and me is my lab report states the optimal reading should be aimed at 1 for symptomatic patients who are on Levo.

[HarryE]

Oh if only they would look at symptoms, not numbers!! The ref range at my lab is 0.3-5.