Feel worse since starting levothyroxine - when ... - Thyroid UK

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Feel worse since starting levothyroxine - when will it get better?

Sunflowers1
Sunflowers1

I was diagnosed as hypothyroid just over 2 months ago. At that time, my TSH was >150 and my T4 was 3.9. I was put on 100mcg of levothyroxine.

Before my diagnosis, I had many symptoms of hypothyroidism, so the diagnosis was a big relief, especially because the way the GP explained it to me, all I needed to do was take the levothyroxine, wait a bit and I'd feel loads better. However, a couple of weeks after starting the levothyroxine, I started to feel much worse than I ever have. Still all the same symptoms, just much worse, to the point that I have now organised to have reduced hours at work because I just can't keep doing full time. I'm now just over 2 months post-diagnosis and no signs of even feeling no worse than before diagnosis, let alone better.

I had a blood test this week which showed TSH of 48 and T4 of 17 [9 - 25]. I'm waiting for my appointment with my GP to discuss these results. As I understand it, my T4 is now within the normal range, but my TSH is still high so I still need more T4?

I'm also deficient in B12, so have been taking supplements for that. This week's blood test showed it was in the normal range: 270 [220-700] (I think - I'm doing this from memory, will get my GP to print it out when I see him).

So basically, I'm waiting until my thyroid function tests show normality, and hoping that by that point, or shortly after, I'll start feeling better. Is this likely? Any idea on how long it'll take? I know everyone's different so it might be hard to say, but the uncertainty is driving me mad, I can't live like this :( I don't understand why I feel so much worse.

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SeasideSusie
SeasideSusieAdministrator

Sunflowers1

What brand of Levo are you taking?

Sometimes it's best to start at 50mcg and gradually increase 25mcg at a time every 6 weeks.

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.

It can take months for levels to stabilise and feel well, and often results look good before we feel good.

Have you had thyroid antibodies tested as well?

What was your original B12 result? Are you self supplementing or is it prescribed? When taking B12 we need a good B Complex as well to balance all the B vitamins.

What about Folate, ferritin and Vit D, were those tested?

The levo brand is Teva. I've seen a few things about slowly increasing the dose while reading up on hypothyroidism. 100mcg is what the GP put me on (different GP to the one I will see next - you never see the same one twice at my practice, though I think I've found one that is better than the others so I'm aiming to keep seeing him). At that time, I knew nothing so didn't question it. I doubt they'd be eager to reduce the dose now, and maybe it's too late now anyway.

I think the GP said he was going to request antibodies to be tested but I don't know the results yet. I can't see the GP for a week because he's away, but I figured it was better to wait to see him rather than seeing someone else.

B12 was originally (2 months ago) 188. My mean cell volume was 103 [80-99] which I think is what caused them to test the B12. On the test from this week, it's still 102. The supplement is prescribed, 50mcg of cyanocobalamin. I was on a strong vitamin B compound, prescribed by a different GP to the one I'm now seeing, but my current GP said I only needed the cyanocobalamin. I do also take a standard, supermarket multivitamin.

Vitamin D was not tested. Folate was 3.8 [2.6-17.3] and ferritin was 57 [10-420] 2 months ago. I'm not sure if it's been tested this time, or if so, what the results are.

SeasideSusie
SeasideSusieAdministrator in reply to Sunflowers1

Sunflowers

B12 was originally (2 months ago) 188

So that was below range. Were you tested for B12 deficiency/Pernicious anaemia? This should have been checked and possibly you need B12 injections.

Signs and symptoms of B12 deficiency here b12deficiency.info/signs-an...

I do also take a standard, supermarket multivitamin.

Check the ingredients. If it contains iron, iodine (or kelp) and/or calcium then ditch it. Iron affects absorption of everything else. Iodine shouldn't be taken unless tested and found to be deficiency, particularly for us Hypos. Calcium again should be tested. Multivitamins are generally not recommended as they contain too little of anything to be of any help and often contain the cheapest and least absorbable form of ingredients.

ferritin was 57 [10-420]

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

Vit D is important so if not tested I would ask for it to be done, or test privately with a blood spot test from City Assays (NHS lab who offer this test for the general public)

vitamindtest.org.uk/

The levo brand is Teva.

Teva has caused umpteen members to have awful side effects and many have done Yellow Card reports about it. I would ask for a different brand and see if you get on any better.

I wasn't tested for pernicious anaemia that I know of, but I did ask my GP about it and he said I didn't have it. I don't know what he was basing that on.

What you said about multivitamins was interesting because a previous GP recommended them, particularly ones with iron. But this was the same GP who ONLY prescribed the strong vitamin B compound in response to my B12 being below range. The strong vitamin B compound has no B12 in it. My current GP has no idea why she did this.

Thank you for your other advice. I will look into iron-rich foods, vitamin D and alternatives to Teva.

SlowDragon
SlowDragonAdministrator in reply to Sunflowers1

You are legally entitled to printed copies of your blood test results

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018)

If antibodies have still not been tested politely insist on both TPO and TG thyroid antibodies being tested and vitamin D and folate as well

B12 and folate work together. Essential to always test both. How on earth did your GP "know" you didn't have Pernicious Anaemia. Your results were low, you should be tested before starting supplements

Low folate and low B12 are extremely common when hypothyroid. As are low vitamin D and ferritin

Thank you for the info on blood tests. It's good to know they can't charge you. I have printouts for my first two blood tests (I had two within a week of each other - the second one was to test for B12 because my mean cell volume had shown high on the first one). I asked for these when I last saw the GP and had been prepared for a charge, though they didn't charge me.

I do have online access, that's how I know the results from this week's test. Just I have to use my computer to access it and I'm doing this on my phone, hence why I'm not sure whether ferritin and folate have been tested this time: I didn't know to check for them when I looked and there's lots of stuff on there so I just picked out TSH, T4 and B12. I did look for the antibodies though because I remember he said he was going to ask for that, but I couldn't see it. Maybe it's not on the online system? Can't see why not though. I'll make sure it's on my list of questions to ask next week. I took a list last time and I felt so guilty because I've been trained my whole life to only ask about one thing, and not take too long about it, a policy which I believe has led to a delay in my diagnosis - I didn't complain about all my symptoms because I saw most of them as separate things. Anyway, I've resolved that I need answers and I need to look out for myself so lists it is!

Thanks for the tip about online access though. It is so much better, and much easier than asking reception for results - it's impossible to get anything beyond the level of 'normal' out of them.

I've no idea how he knew it isn't pernicious anaemia, unless it's one of the tests I've overlooked. Do you know what it would be called? Would it only be done after B12 was found to be low? If so, it definitely hadn't been done when I saw him last - it was the second test that showed low B12. The third one was only this week and was after I saw him.

SlowDragon
SlowDragonAdministrator in reply to Sunflowers1

It's common to have low B12 when hypothyroid so it should improve as thyroid levels improve

Olivua
Olivua in reply to Sunflowers1

Tena brand is the problem. . Fillers are different. Even tho it is lactose free. . Took me about three months before I felt better. . And now I am. Worth changing brands. Am on eltroxin 150. Split dose. . 75 in the morning. At 7. . And 75at 7pm. . . This really works for me as I ran out of steam by 3pm. . . My brand is mercury pharmacy group. And thank God I am beginning to be me again. . . . Sparkle Back. . Jeans fitting me. . Head is sooo much clearer. And the swollen feet and legs have eased Alot. . . . Not able to push myself to swim as I am battling uti. Constant. . Brought onn by low normal t4 reading Treated even though they were within normal but I was very symptomatic. . Sore hands and feet in The morning. . Brain fóg. . Couldn't park the car n town the weekend before I was diagnosed. . That really Frightened me. And general Crankiness. . Low tolerance for interaction and. Trying to read a book was nigh near impossible. . . I finished it last weekend!!!!! . Hang in there. . Don't get too caught up with the diagnosis. . I did and nearly freaked myself out!!!! . . . Take ur time. Pace urself. And the biggest point. To help u feel better. . Take the meds at the exact same time every day. This is a must. And it works. . . Xx. Keep us posted. . And thanks everyone for all the different angles and areas this damn thyroid can throw at us all. . . X. A great lil group of people's.!!!

Olivua
Olivua in reply to Olivua

TEVA brand. . . Typo!!!!!. Not tena!!!!! . Too lazy to go get my glasses!!!!

helvella
helvellaAdministrator in reply to Olivua

You can edit your own posts/responses! :-)

support.healthunlocked.com/...

Olivua
Olivua in reply to helvella

Thanks. . Just discovered!!!!!! . . . Onda fone. Laptop is sick. . . .

Sunflowers1
Sunflowers1 in reply to Olivua

Thank you for your message. It's good to hear from someone who actually started feeling better! My only thought about changing the brand is that I know that for the first month, I was on a different brand (went to a different pharmacy). I'm not sure which it was! But I think it might have been Mercury. But I started feeling worse after a couple of weeks of taking it, and changing to Teva didn't change anything, better or worse. But I'll definitely keep it in mind, and I'll definitely try changing at some point. So many people seem to have a problem with it, changing seems the obvious thing to do if I don't feel better. I might try discussing it with my GP next week, though I know GPs aren't always the best with these things.

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