Could my high TSH be resolving on its own? - Thyroid UK

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Could my high TSH be resolving on its own?

melodypond profile image
9 Replies

My latest Blue Horizon results still show a TSH over range but it has lowered since my tests 6-7 weeks ago. This correlates to my Ferritin having risen (albeit only slightly and I am still at the low end - I have been supplementing more). Could it be that if I get my ferritin levels at optimum that my TSH may go back in range? I have been ill for 8 years with most of the symptoms listed on Thyroid UK but I guess what I am asking is am I hypothyroid at all? I do believe I am (I have been very ill even when my TSH has been 2.5) but I am about to book an appointment with a private endo and I don't want to waste my money if he is just going to say you are not hypo and if you keep boosting your ferritin your TSH will go back in range (though to be honest my ferritin is 'in range' now so really if we are just going off blood tests, he wouldn't be able to argue that). 

I am as yet undiagnosed and a Genova urine test 18 months ago also showed very low T4 and T3 only just 'in range'. 

Nb. ignore the high B12 - I am supplementing! 

Thanks 

MP x

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9 Replies
Clutter profile image
Clutter

Melodypond,

TSH fluctuates according to time of day tested and is highest early in the morning and lowest after noon.  It also drops slightly during warmer weather in the spring and summer.

Your TSH has dropped very slightly but I don't think you should take this as ruling out thyroid dysfunction.  Ferritin has risen but is still very low.  I very much doubt that the slight improvement in ferritin has affected TSH.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

melodypond profile image
melodypond in reply to Clutter

Thanks for your response Clutter. I took the tests at exactly the same time of day at 6am when i got up but appreciate there is only a slight fluctuation. I am just doubting everything at the moment, myself, doctors, tests! My confidence is low at the moment too and I have no energy or fight left in me so I'm picking holes in everything as a defence against doctors questioning me. I am still plucking up the courage to book a private endo and that would be me paying them so in theory I should have more say! I need to have a word with myself and just bite the bullet. I was never this wishy washy     Before I got ill, in fact people used to say I was bolshi! X

Pastille profile image
Pastille in reply to melodypond

That rings a bell :)

puncturedbicycle profile image
puncturedbicycle in reply to melodypond

I hate to be a downer but in my experience, whether private endo or nhs, unless you choose very carefully they are all very conventional and you may not have much say in anything. If I had it to do again I'd probably go to someone who could treat me but who would be sympathetic, one of the practitioners recommended here, if I knew I needed treatment and expected my doctor to refuse.

My tsh was over 30 when I was diagnosed, and I delayed levo treatment for a while only to find that when I returned to the gp my next test showed a tsh of 5ish, and they wouldn't treat me. So yes, your tsh can fluctuate a lot.

I'd lay money on no endo ever saying that if you raise your iron your tsh will return to normal. They just don't believe in that kind of thing.

melodypond profile image
melodypond in reply to puncturedbicycle

Thanks. I don't think you are on a downer, just telling it like it is. That is my big fear, paying £200 just to be told I don't need treatment with a TSH of 5 ish (though the endo is recommended on here and a few people have pm'd me to say he is good). I also emailed him to see if he would accept my private tests that I've already had done and I did flag what my TsH is. He will accept those tests and he didn't say my Tsh was in the realms of not being treatable. I suppose he wouldn't though and needs to hear my mountain of symptoms from over the past 8 years. I am hoping he will have an open mind and listen to me. He also does nhs and his secretary there said all his patients love him! I was toying with just asking my Gp for a direct referral but it could be a 3 month wait and also going private does give me a sense of having more control/a say even if the reality is different! And I just need that I think to make me feel more confident. X

puncturedbicycle profile image
puncturedbicycle in reply to melodypond

Yes, I totally understand where you're coming from. It's that feeling of taking the reins rather than letting the doctors say where and when.

My fear for you is that, if you do fork over the cash and he then turns into a conventional endo, it could feel like even more of a betrayal as your hopes for him were higher if that makes sense.

But you're a grownup and I'm sure you don't need me to worry on your behalf! :-) (I hope saying that doesn't seem passive-aggressive. I admit I have some ptsd from my own endo era.)

It certainly sounds like you've done all your homework so you should feel good about that. I guess I'd want to know if he has treated anyone else who is equally 'borderline' or 'subclinical' as they love to say. If I knew he was flexible on that issue I'd feel much better about seeing him. It seems as though they are very stuck on subclinical hypo and most of them won't budge until you're very much in the top of the tsh range, even though in theory the guidelines allow them to do a trial of meds if you're symptomatic.

I truly wish you the best of luck. It sounds like you've laid a good path for yourself and if your endo will play ball you should be on your way. :-)

melodypond profile image
melodypond in reply to puncturedbicycle

Aw no I like that you are so lovely you are worrying about me!  With a husband whose lost patience it's nice to know you care. 

You are absolutely right in what you say so this afternoon I emailed his secretary and just asked outright if he treated patients with bloods like mine.  So we'll see. You could have just saved me a lot of money so thank you! 

I can't believe you had a TSH of 30 and then they wouldn't treat you when it went down to 5. That's like saying to a cancer patient we  will treat you when your tumour is the size of an Orange but not if its reduces to the size of a grape - the cancer would sti be there like you were still hypo. It's disgraceful!

Mpx

shaws profile image
shawsAdministrator

What seems to me to be the most important is that both your FT3 and FT4 are low. I think that would cause symptoms never mind the TSH.

As you are not yet on thyroid hormones this is a link which may be helpful:

thyroiduk.org.uk/tuk/testin...

melodypond profile image
melodypond in reply to shaws

Thanks Shaws. Yes you are right they are low and my urine test showed they are very low, t4 was well below range, but it's convincing a doctor of that when the bloods aside from TSH are in range.  I have emailed the endo to see if he has treated people in the past with bloods like mine, so let's see. Fingers crossed. All I know is I can't carry on like this. MP x

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