TSH barely in range but still struggling - Thyroid UK

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TSH barely in range but still struggling

26 Replies

I am not very good at interpreting my blood tests! Hypothyroid for 6+ years. My nutrients are all good (iron, B12, ferritin, folate, D, etc). TPO Antibodies <25. Just wondering what to make of this recent blood work. Just feeling extreme fatigue, zero energy, losing hair. Some days better than others, but the bad ones I can barely get through the day.

TSH 4.32 (.4 - 4.5)

Free T4: 1.26 (.82 - 1.77)

Free T3: 2.9 (2.0 - 4.4)

RT3: 18.4 (I think should be above 22)

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Jazzw profile image
Jazzw

Before you get a slew of responses I’ll link to your last post here so that folk can see the history. :)

healthunlocked.com/thyroidu...

So how much Levo are you on now? 25mcg?

in reply toJazzw

Jazz - I have come through overmedication and actually have been on 0 meds for 9 weeks now (down from 75mcg + 20 Cytomel last Aug that sent me way hyper - very ill). Still some slight hyper symptoms so doc not ready to try a low dose of meds yet. I should have mentioned before - just wondering if those blood results could render me feeling poorly now - I feel under medicated. :(

Jazzw profile image
Jazzw in reply to

Yes - those results would make you feel ill (they’d definitely make many of us feel ill). Hopefully your doctor is one of the sympathetic kind who realises that having a raised TSH under 10.0 doesn’t mean that you aren’t hypo.

What hyper symptoms do you have?

in reply toJazzw

Last summer when the previous doc raised my meds (looking back he probably should have reduced as my symptoms were more hyper) - I was having substantial palpitations, pretty extreme weakness, weird head pressure, anxiety and lost a few pounds. Interestingly the symptoms would sort of come and go - I'd have them for a week or two then they'd vanish like my body was saturated and trying to compensate. Since the overmedication my symptoms have been loose stools, extreme fatigue/weakness, rapid heart, sweating at night, waking a lot at night. I will tell you the worst so far was weeks 7 of 8 of no meds. This last week (#9) has been somewhat better but now I feel more hypo - no more loose stools, heart rate back to normal, sleeping better - but feel the severe fatigue like I need meds. :( I am such a disaster.

SeasideSusie profile image
SeasideSusieRemembering

sroth2307

RT3: 18.4 (I think should be above 22)

What was the range? When I did one the range was 10-24. I wouldn't worry anyway, the test can tell you if you're above range, but it can't tell you why, and there are many reasons why we make rT3 and for it to be above range.

TSH 4.32 (.4 - 4.5)

Far too high in range. You are undermedicated and need an increase in your Levo dose. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

Free T4: 1.26 (.82 - 1.77)

Are you in the UK? That's not a normal FT4 range for the UK. Anyway, 46% through that range, but of course we don't know what thyroid meds you're taking.

Free T3: 2.9 (2.0 - 4.4)

Low in range compared at 37.5%. Low T3 causes symptoms.

You haven't given a range for antibodies but a quick look at your profile shows one of your post headings saying you have Hashi's so there's no point in further testing of antibodies because they're going to fluctuate.

in reply toSeasideSusie

SeasideSusie - thank you for the explanation on each of the results. I am in US. I have been through so much the last year with thyroid med changes and poor guidance. I went from a 58 year old super fit/happy person to a shell of what I used to be. It has really brought me to my knees. It is a travesty how doctors do not listen! - a doc last summer way over-medicated me (5 Levothyroxine + 20 Cytomel) making me very hyper and very ill. Now, under care of an endo/internist who cares and is good, I have been on NO meds 9 weeks. Have had a million tests come back normal. Still showing some hyper symptoms (increased pulse and some weakness/no energy but that could be hypo at this point.) but finally getting much better on the hyper symptoms. Doc is considering the RAIU (uptake) scan so he can see exactly how thyroid is functioning. I had 1 nodule that disappeared last year as well. Weeks 6 & 7 I had pretty bad tachycardia so that is why doc did not want to add any T4 and/or T3 meds back in yet. If/when we do it will be in very tiny doses.

greygoose profile image
greygoose

Do you have labs from last August when you say you felt hyper? You probably had a Hashi's 'hyper' swing at that point, because your dose wasn't excessive. That's how Hashi's works, it swings from hypo to 'hyper' and back again. Now, you're on your way down again, with high TSH, and very low FT3, and that's why you feel so bad.

in reply togreygoose

Greygoose - sure results when overmedicated were:

TSH: .013 (.4 - 4.5)

Free T4: 1.41 (.82 - 1.77)

Free T3: 6.5 (2.0 - 4.4)

RT3: 19.0 (10 - 22)

3 months after adding 20 Cytomel to 75 Levothyroxine I could hardly get around I felt so terrible. Had the new doc check me out last fall and after seeing my heart rate/reflexes and hearing my other symptoms (loose stools, anxious, extreme weakness) he starting cutting back. After the first drop in Cytomel (dropped to from 20 to 10) I felt like a new person in 4 days - of course that didn't last because I continued to adjust. So it has been a lot of change coming all the way down to zero. Very much looking forward to my heart slowing down enough to get back on meds and going to start w a very small dose doc said.

greygoose profile image
greygoose in reply to

OK, so it wasn't a Hashi's 'hyper' swing. :)

But, there was absolutely no need to reduce down to zero. Reducing the T3 by 5 mcg would probably have done it. You weren't that much over-range. Dropping by 10 mcg was obviously doomed to failure, because it was too much. Reductions should be no more than 5 mcg every two weeks. And, if he started you by adding 20 mcg to your levo all in one go, then that was wrong, too. All hormones should be started low and increased slowly - with T3 you should start on 5 mcg and increase by 5 mcg every two weeks.

Now, you have to claw your way back to a decent dose. the body doesn't like all these ups and downs.

But, I really wouldn't bother with the rT3 anymore, if I were you. It doesn't give you any useful information. If you get your nutrients checked - vit D, vit B12, folate and ferritin - and your cortisol, that would be a better way of spending money than the expensive rT3 test. :)

in reply togreygoose

Greygoose yes claw is the right word! I had a couple really bad doctors - the one who added the 20 (when hyper symptoms had first started but he mistook it for hypo) and the one who reduced too quickly. And truth be told the endo/doc I have now (who seems to know what he is doing from a local well know research hospital) all but told me the other docs made mistakes (and you know docs never do that!) Totally agree on the RT3 and am going to drop that test. This newest doc is considering the RAIU radioactive iodine uptake test will find out next week for sure. They use it to look very closely at thyroid function. Do you know is it safe? The word radioactive scares me but I read it is the same dose of radioactive material as a regular xray.

greygoose profile image
greygoose in reply to

I cannot imagine why he wants to do this test. It's pretty obvious your thyroid is not working correctly - well, to anyone that knows anything about thyroid, anyway. What can they possible learn that they don't already know? You have antibodies, so you have Hashi's. You need levo because your FT3 is on the floor. I don't think this doctor does know what he's doing, or he would have put you back on levo when he saw these results. I don't understand what he's faffing around for.

in reply togreygoose

It seems like my strong hyper symptoms still present at my last doc appt 10 days ago was his concern. My understanding is he is holding off on meds until my heart rate stabilizes some and that has definitely happened in the last week. He suggested we would start w med after he reviewed a few final test results.. urine cortisol creatinine and holter monitor. Then we would decide. Do you think I should push for a little t3 or just some levithyroxine based on my blood test? Thank you I truly appreciate your input.

greygoose profile image
greygoose in reply to

You should start on 50 mcg levo and work your way up slowly - 25 mcg increases every six weeks - until your TSH comes down to 1 or under. Then you will be able to see how well you convert, and whether you need T3. You must not try to run before you can walk. When dealing with hormones things should be done slowly, or you will find yourself back at the starting point and have to do it all over again. Start low and build up slowly.

What are these hyper symptoms? There's not a clear cut line between hypo and hyper symptoms. A lot of them cross over. Doctors don't seem to understand that. And, whilst you cannot be hypo and hyper at the same time, you can have hypo and hyper symptoms at the same time. So, doing a test to determine thyroid function will not give him any useful information.

Given that heart problems are often due to being hypo, seems to me that starting levo will help your heart stabilise. Holding off starting it could be worse for your heart.

in reply togreygoose

My hyper symptoms are extreme weakness, loose stools, fast pulse, anxious, weird head pressure, dry mouth, they come and go sort of in a package with some days worse than others. Many of these symptoms have subsided a good bit just in the last couple weeks. I am at 9 weeks with no thyroid medicine and just in the last week I'm feeling more hypo with bad fatigue, more tired. Yes the difference between hyper and hypo symptoms can be subtle and there's definitely overlap. But the hyper feeling was so much worse! I tell my sister it feels like I have a black veil over me whereas hypo is pretty much just really fatigued and tired . My heart rate has really improved and I think next week we will talk about starting back on medicine. I cannot thank you enough for your suggestion on how much to start with and what you mention sounds right. I have learned lots of valuable lessons through this last year. Will never make the mistake again of increasing or decreasing too much at one time.

greygoose profile image
greygoose in reply to

OK, so not all of those symptoms sound like hypo symptoms, but anxiety most certainly could be, extreme weakness and dry mouth also. The rest could be due to the excipients in the pills. You do know that you can't be hypo and hyper at the same time, don't you? And, that if you are hypo - which you are - you cannot be hyper. But, you can have the symptoms of both at the same time. Especially if you have Hashi's. Do you have Hashi's?

Anyway, when you start levo again, make sure you get a different brand. Not all the brands suit everyone. :)

in reply togreygoose

Yes I do have Hashis although I have managed to keep the TPO antibodies under 25 for a year now. And I sure do understand you cannot have both hyper and hypo at the same time. I have read a number of comments from other overmedicated folks that symptoms from overmedication can linger a long time - 10 weeks or longer. Which I feel I am finally turning the corner as the hyper symptoms are subsiding and I am now feeling more hypo. Will definitely look at another brand instead of levothyroxine duly noted. Very grateful to you for your insight.

greygoose profile image
greygoose in reply to

Keeping your antibodies under 25 - or getting rid of them completely, come to that - will have no effect on anything. You still have Hashi's. The antibodies are not the disease. And the TPO/Tg antibodies do not attack anything. They just come along after the attack and clean up the mess, removing traces of TPO and Tg that have leaked into the blood during the attack.

Unfortunately, doctors do not understand anything about Hashi's, do not know how it works and think antibodies are irrelevant - well, they are, except that they show you have Hash's. But doctors do not realise how having Hashi's can make your hormone levels fluctuate, and how you can have hypo and hyper symptoms at the same time. And, that when your thyroid hormone levels go high it does not mean you've 'gone hyper'. It just means you're having a Hashi's swing.

in reply togreygoose

Your explanations are always so clear. Thanks for all the help grey goose much appreciated as I trudge forward.

greygoose profile image
greygoose in reply to

You're welcome. :)

MissGrace profile image
MissGrace

Hi sroth2407. I think I have been through a similar experience to you. I was also over-medicated on T4 a while ago. My tests clearly showed I was over. I had problems with racing heart, nausea etc.

Reducing the medication made little difference and after over 6 weeks of reductions taking me from 100mcg down to 50mcg my endo told me to stop completely. I think he was concerned that I’d been both over-medicated and was now having a hashis flare too.

I was off the meds for about 8 weeks (and felt okay.) Then I had blood tests and my TSH was 60! Strangely, I still didn’t feel as terrible as when I was first diagnosed perhaps because my thyroid was ‘joining in’ most days.

I was then put back on 25mcg a day - but it didn’t work, my heart reacted to the meds again. It was as if being over-medicated had made me extremely sensitive to the medication.

I had to go really slowly with increases - 1x25mcg a week for two weeks, then introduce another etc. Every time I raised the meds my heart needed time to adjust and settle. As you can imagine, it has taken me over a year to get where I am now - 75mcg most days, 100mcg every 5th day. But I am lots better now and very close to optimum (I know 100mcg a day is too much, 75mcg a day too little.) I have loads more energy now, I’m back exercising again and I’m about ready to stick with this dose rather than twist further and gamble with over-medicating again. I’ve been extremely fortunate to have had the guidance of an excellent (private unfortunately - I know this is not an option for everyone), thyroid specialist during all this to encourage me, advise me and reassure me.

It’s a long journey - but you can get there.

Good luck! 🤸🏿‍♀️🥛

in reply toMissGrace

MissGrace very grateful to hear about your experience and will definitely follow your path with very small increase. So happy to hear you were able to get back to working out. It is what I miss most. Before putting me back on a little bit of med Doc wants to see my heart rate down more (it has been much better consistently the last week) but now I feel such fatigue I think due to undermedication. Alot of the "hyper" feeling is FINALLY fading (loose stools, waking at night sweating, anxious, weird head sensations, dry mouth, tingling - all much better), I agree once we go "over" on med our bodies are much more sensitive. Thank you again for sharing your experience with me. This has been a trying, challenging time for me. Doc said he does think we will get this lined out and I will be fine - he said it can take SIX MONTHS if you have been overmedicated for a long while!

MissGrace profile image
MissGrace in reply to

You will get there I’m sure, it sounds like you have some good advice and support. My endo held my hand when I sobbed in despair and said calmly to me ‘I can get you well, it may be a long journey but you will get there.’ He made sure I didn’t give up hope through the slow increases and kept me going, especially as I passed out a couple of times whilst under-medicated and ended up wired up to an ECG in A&E with abnormal results.

I also had cardiac tests (ECGs, holter monitor, echocardiogram, stress test), which all came back fine. That really helped to put my mind at rest.

I’ve grown used to the palpitations (which aren’t usually harmful as long as your heart beat ‘swings’) and I always think of the lines from the Sylvia Plath poem ‘Tulips’ when my heart thumps about:

‘And I am aware of my heart: it opens and closes


Its bowl of red blooms out of sheer love of me.’

It’s working hard to keep me alive! Good luck.

🤸🏿‍♀️🥛

in reply toMissGrace

MissGrace - I had tears in my eyes last week when this newest doc (he is from a well known research hospital and very good) looked at me and said basically the same thing your doc told you. Thank you for giving me hope! It is so comforting to hear someone else has been there and survived. Yes I have had all the heart tests, head scan, chest xray, volumes of blood work - same as you all normal. You are a lovely person to share the Tulips lines and I will remember those words.

Mitzvah_heroes profile image
Mitzvah_heroes in reply toMissGrace

How poetically said 😊

Kitten44 profile image
Kitten44 in reply to

Just to say I would not think those to be hyper symptoms.

I get the tingling, dry mouth and various cognitive issues, if that is what you mean by weird head sensations. Before taking levo and while on low doses, I had night sweats regularly.

I think I was born anxious...

I get loose stools when my period looms.

And I am definitely hypo.

In short, hypo symptoms can take many guises, particularly for those with hasis.

Hope you find a way forward, though. Good luck!

in reply toKitten44

I’m with you. Night sweats, dry mouth etc and I’m hypo.

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