I really need some help and advice please. - Thyroid UK

Thyroid UK

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I really need some help and advice please.

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11 months ago•19 Replies

I am struggling. I quit smoking back when I was 30 and I’ve been unwell ever since. I’m now 38. They put me on levothyroxine about 18 months after I quit smoking because my tsh went up to 11, my free t4 went to the bottom of the normal range, my free t3 went sky high. I also developed antibodies at 350.

The years I have been on levo have been awful. I am half a stone over weight, I have had 5 miscarriages since being on levo, my mental health is really bad, I get tired all the time, I struggle at work because I am a nurse so I have to work long shifts on my feet and I get so tired that I can’t move for days after. I feel so up and down some weeks. Things have been so bad for me that at times I have had really bad thoughts because the thought of carrying on like this is terrifying. There have been times I have been so tired I haven’t got up to see my teenage daughter off to school. I am failing as a wife and mother and it’s because of this disease. I have tried having a higher tsh, a lower tsh, alternating, you name it I’ve tried it.

I feel like the last thing I could try is taking some kind of nicotine replacement. I was fine when I was smoking. I know its disgusting and I never want to go back to cigarettes but everything taken into account , I was healthier and living a far better life. I am so unhealthy now. The whole point was to be healthier, but now I have an autoimmune disease that is wrecking my life. I’ve heard nicotine can help with conversion and things. Do you think this could be an option for me ?

My antibodies at the minute are below the range for a positive result and have been for some time.

Please help

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19 Replies

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TiggerMeAmbassador11 months ago

Hello welcome aboard

You really need a full thyroid panel to see where your free T4 & 3 are and how well you are converting, TSH isn't a good guide to thyroid hormone levels

thyroiduk.org/testing/

Do you have any recent results?... also important are folate, B12, ferritin and Vit D levels

• in reply toTiggerMe11 months ago

Yes I have some recent results

Ferritin is 126 ( 30 - 169 )

Folate - 16 (> 7 R)

B12 - 163 (37.5 - 188)

Vit D 82 - (50 - 250)

TSH 0.195 (0.27 - 4.2)

FT3 - 5.2 (3.1 - 6.8)

ft4 - 19.1

THYROID PEROXIDASE ANTIBODIES 9 (0 - 34 )

I’m so sick of feeling unwell. I know people who take levothyroxine and they’re running marathons, so I don’t understand why it’s causing so many problems for me. I just want to feel or find a dose that’s right for me. Is it normal that I can’t ever lose weight ?

TiggerMeAmbassador• in reply to11 months ago

Yeah it works for many but a good number of us don't convert enough to the active hormone

Free T4 (fT4) 19.1 pmol/L (12 - 22) 71.0% (guessed the range)

Free T3 (fT3) 5.2 pmol/L (3.1 - 6.8) 56.8%

T4:T3 Ratio 3.673

How long after your last dose of T4 were these results and were they before 9am water only?

Your Vit D levels are a little low aiming for 100-150

• in reply toTiggerMe11 months ago

I took the test at 6 am I think? Or not long after. I normally take my levo at 6am.

I can’t even get though a shift without feeling absolutely unnaturally wiped out. What do you think is wrong with me ?

TiggerMeAmbassador• in reply to11 months ago

Under replaced not converting well enough

Sparklingsunshine11 months ago

I agree with Tigger, you need a full thyroid panel doing, once on thyroid meds TSH is a very poor indicator of thyroid status. I would also gently point out that the reason you feel worse since quitting smoking is because you were placed on Levo 18 months after quitting, so its the hypothyroid making you ill, not the lack of nicotine.

Often GP's have very limited knowledge of thyroid disorders and frequently keep us undermedicated. We see it all the time on the forum.

Many of us have experienced deteriorating health and quality of life after diagnosis. However its not a given and chances are if you were on enough Levo for you, ( not your doctor) you would be feeling much better.

Also as hypos we need optimal levels of Vitamin D, ferritin, folate and B12. These are frequently very low and often require constant supplementation. If these are low they will contribute to ill health and affect your conversion of T4 to T3.

• in reply toSparklingsunshine11 months ago

Thank you for the kind reply. I have posted some results above. I often “feel” overmedicated and I’m extremely tired. My gp likes my tsh to be lower than it currently it but he lets me keep it where it is because he knows how bad my health as been over the last 8 years. He gives me a bit of freedom to find the dose that suits me but I just not finding it. To the point where I feel like I might aswell go back to trying nicotine because nothing can be worse than this.

Sparklingsunshine• in reply to11 months ago

Overmedicated can feel a lot like hypo, the symptoms can be very similar, which isnt helpful 😉. So anxiety, jitteriness, insomnia, fatigue, palpitations can mean either under or over medicated. Unfortunately the only way to know is by having blood tests. Its good you have an understanding GP.

I dont have autoimmune thyroid myself, mine is caused by something else, but I wondered if you'd considered going gluten free. For hypos who have AI disease it can be very helpful and might be worth a try. If you have one AI disease you are likely to get another and you can be gluten sensitive even if not coeliac.

It also might be that Levo monotherapy isnt working for you and that adding some T3 or even Natural Dessicated Thyroid might be what you need.

There is the orthodox mainstream medical idea that Levo is a cure all, but there is plenty of evidence from patients that actually not everyone gets on with it or its not enough on its own, and there are now some doctors and scientists who are challenging this view.

• in reply toSparklingsunshine11 months ago

Thank you sparkling sunshine

My symptoms are a lot like the ones you have described.

I haven’t tried going gluten free yet, I should look into that.

my doctor has never mentioned t3 being an option. I’m hoping that’s something I can try

Thank you so much for taking the time to send me this information

humanbean11 months ago

I feel like the last thing I could try is taking some kind of nicotine replacement. I was fine when I was smoking.

I tried nicotine replacement after having the same problems as you after giving up smoking in 2009. It didn't make anything better. Once the thyroid gives up the ghost there is no way of going back to what you were like before quitting, in my n=1 experience. I already knew that my thyroid wasn't exactly in tip-top condition when I gave up smoking, but it got a lot worse after quitting.

There is a lot of research on this :

onlinelibrary.wiley.com/doi...

thyroid.org/wp-content/uplo...

cambridge.org/core/journals...

link.springer.com/article/1...

• in reply tohumanbean11 months ago

I thought taking some in the form of a lozenge along with my thyroxine my help my conversion .

Something is wrong 😞 I don’t think I should be feeling this unwell

greygoose11 months ago

I’ve heard nicotine can help with conversion and things. Do you think this could be an option for me ?

That only applies to the brain, I think. So, it wouldn't help with our fatigue or any of the other bodily symptoms.

My antibodies at the minute are below the range for a positive result and have been for some time.

Does that mean that they were once high? If so, you had Hashi's, and you still have it because Hashi's doesn't go away. The antibodies could disappear altogether - although they really won't - but you would still have Hashi's. And those results you give above:

my tsh went up to 11, my free t4 went to the bottom of the normal range, my free t3 went sky high. I also developed antibodies at 350.

certainly suggest Hashi's. It's not normal to have sky high FT3 and low FT4! And, I see the answer to my question! Antibodies 350. So, yes, you have Hashi's. Antibodies fluctuate all the time so the actual level is irrelevant. You will still have Hashi's.

So how much levo are you actually taking? You are a poor converter - most Hashi's people are - so the problem could just be that your FT3 is too low. And what you probably want is some T3 added to your levo.

• in reply togreygoose11 months ago

I always feel overmedicated , but with tiredness. I don’t feel like I did when I was hypo or undermedicated, it’s more of a too much caffeine feeling that I have. I often feel like my heart is racing but I’m clearly not overmedicated , in fact I need more ft3 you say.

My body really seemed to like nicotine. I know it’s gross, that’s why I quit, but I was well.

Yes I had a sharp rise in antibodies when I quit smoking. Then the antibodies went after about a year and stayed gone for the last 7 years give it take.

Do you think I should be asking the gp for some ft3? I hope to god this is the answer because I’m at the end of my tether with feeling unwell everyday. What should I say to him? Is there a number my ft3 should be at ?

Thank you for taking the time to reply to me

Sorry, I am taking 94mcg levothyroxine

greygoose• in reply to11 months ago

I'm not the right person to tell you what to say to doctors! lol I tend to just say: I want it and I want it now! Sometimes it works, sometimes it doesn't. But you could explain that you don't feel well on levo mono-therapy, and you know you're a poor converter, and you feel that a little T3 might be just what you need.

If he suggests just increasing levo, say no, that, it's not the right solution.

Is there a number my ft3 should be at ?

No. It's not about numbers, it's about how you feel. You start off on a low dose of T3 - 5 mcg - and increase slowly until you feel better. You have to play it by ear.

• in reply togreygoose11 months ago

How do we know I’m a poor converter if numbers don’t matter ?

greygoose• in reply to11 months ago

No, that's not what I said. The numbers can be very important for diagnosis, but we were talking about 'optimal' levels for good health.

To know how well you convert, you get FT4 and FT3 tested at the same time, calculate the percentages and compare them:

Free T4 (fT4) 19.1 pmol/L (12 - 22) 71.0% (guessed the range)

Free T3 (fT3) 5.2 pmol/L (3.1 - 6.8) 56.8%

(I'm assuming those ranges are correct?)

So, as you see, FT4 71% through the range, FT3 56.8% through the range: a gap of 14.2%. That's too wide. The gap should be much narrower if you convert well.

And the numbers do tell a story: an FT3 of round 50% would be euthyroid, with the FT4 a little higher. But, you're not euthyroid, so just getting results to that number is not good enough. Hypos usually need their Free levels higher than euthyroid. So, for a hypo, your FT3 is low.

When trying to raise the level, that is when the number becomes irrelevant because you need what you need, not what someone else thinks you need. We're all different, and some hypos might feel well with an FT3 75% through the range, but others might need it slightly above range. The important thing is to find out where you need yours as an individual.

So, we can't give you a number to aim for, because it might not work for you. You just have to work up slowly until you feel well.

• in reply togreygoose11 months ago

Sorry I just read it’s not about the numbers.

So it could be that I’m not a poor converter, It’s just a possibility ?

Could it be that I’m taking too much levo and it’s causing low ft3?

From what I’ve just read there is more chance of my thyroid turning into a 3rd lung than my Gp prescribing me T3. I know I sound like a misery

greygoose• in reply to11 months ago

Sorry I just read it’s not about the numbers.

It's not about the numbers when trying to find the right dose, but the numbers do have their role to play.

So it could be that I’m not a poor converter, It’s just a possibility ?

Doubt it. You're certainly not a very good converter in any case. I didn't say it was a possibility, I said 'you're a poor converter'.

Could it be that I’m taking too much levo and it’s causing low ft3?

Well, to know that, you'd have to look at a previous blood test report with a slightly lower FT4 - if you have one - and see what the FT3 is on that.

From what I’ve just read there is more chance of my thyroid turning into a 3rd lung than my Gp prescribing me T3. I know I sound like a misery

Are you in the UK? If so, GPs cannot initiate prescribing T3, it has to be done by an endo. And, if you get the right endo it is possible to get it prescribed. The difficulty is finding the right endo.

You don't sound like a misery at all. You sound like someone who is very sick and very confused.