Hashimotos? : Hi, I’ve been a long time observer... - Thyroid UK

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Hashimotos?

Aj2690 profile image
23 Replies

Hi, I’ve been a long time observer of the group and was just hoping for some advice.

I was diagnosed with hypothyroidism after a private blood test and started medication a year and a half ago. Since the I’ve slowly been increasing my levothyroxine which currently sits at 75mcg/50mcg alternating days.

I was feeling exhausted in December so went for a gp blood test which confirmed my TSH at 4.95 (not enough to increase Levo apparently). I therefore ordered another private blood test for a full advanced thyroid panel.

This is where my confusion comes in. Attached are my results. I’m trying to use Google to understand them better but of course the data/info on thyroid issues is a bit pants.

Does this confirm Hashimotos? And if so what should I do? Ideally I’ll be asking my gp if I can move onto 75mcg daily but I also wanna start a family soon, will Hashimotos make that difficult?

Thanks in advance 🧡

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Aj2690 profile image
Aj2690
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23 Replies
Forestgarden profile image
Forestgarden

You definitely need a levo increase immediately! 50mcg is the starting dose. The nhs guidance says to titrate to 1.6mcg per kg of body weight... so you can work out roughly what you need. You should also get some private bloods done 8 weeks or so after you increase which will include tsh, free t4 and free t3. .. this is important to know as t3 is the active hormone. Make gradual changes to your levo dose, no sudden jumps.

Aj2690 profile image
Aj2690 in reply toForestgarden

I’ve been on 75 a day previously and my levels dropped significantly. Unfortunately it led to my anxiety being exasperated and I felt even more unwell so changed to 50 one day and 75 the next last summer. I do think an increase will help though so that’s my next steps. It’s more my antibody results in more concerned about now as they’re massively out of range.

Forestgarden profile image
Forestgarden in reply toAj2690

What levels dropped significantly? Your free t4 should increase if you take more levo

Aj2690 profile image
Aj2690 in reply toForestgarden

sorry I meant my TSH dropped significantly when I took 75 a day, it was too much for some reason so me and my gp agreed alternating would be best but that was July last year so maybe an increase would be good.

TiggerMe profile image
TiggerMeAmbassador in reply toAj2690

Your anxiety is more likely caused by your Vit D deficiency, we need good Vit D levels to convert T4 to active fT3. Grab one that contains K2 MK7 as this is good for your bones, calculator below, you are aiming for 100-150 🤗

grassrootshealth.net/projec...

Have you any results for ferritin, folate and B12 which are also vital for conversion?

Aj2690 profile image
Aj2690 in reply toTiggerMe

I also suffer from anxiety and take meds for it so that probs didn’t help 🙈 I had my b12 and ferritin tested and apparently that was good. I’ve been really trying to increase my vitamins. Maybe just need some more Vit D.

Test
TiggerMe profile image
TiggerMeAmbassador in reply toAj2690

Yep, they look ok... grab a good Vit D & K2 the oil based sublingual works well, like Nature Provides or some like the spray by Better You

If you prefer tablets always take with a fatty meal 🤗

Aj2690 profile image
Aj2690 in reply toTiggerMe

Did the calculator and it says I need 6000 of the Vit D, currently I use the 3000 better you spray and one 1000 gummy so I’ll up that a little. Thanks so much! 😁

TiggerMe profile image
TiggerMeAmbassador in reply toAj2690

I'm amazed it's that low if you are already supplementing? You can do a loading dose for a week to boost your levels? Could it be the root cause of your anxiety?

Aj2690 profile image
Aj2690 in reply toTiggerMe

Yeah I saw that, think it said 25,000 😬 would anything bad happen if I took too much?

TiggerMe profile image
TiggerMeAmbassador in reply toAj2690

Some people have an issue with Vit D but you would know that by now as you already supplement... some people opt for just a large dose once a week 🤷‍♀️

Must admit I did a loading dose of everything when I first found out about the necessity of them when I first joined this forum and it work well for me...

I didn't notice a folate result as that is another one that makes you feel lousy if low?

Aj2690 profile image
Aj2690 in reply toTiggerMe

Yeah it’s pretty low anyway so I’d have to take a lot to overdose on Vit D really. I didn’t test folate unfortunately, I’ll add it for my next testing just in case. Thanks!

Forestgarden profile image
Forestgarden

Most people start to feel better when tsh is close to 1

greygoose profile image
greygoose

'went for a gp blood test which confirmed my TSH at 4.95 (not enough to increase Levo apparently)'

'my TSH dropped significantly when I took 75 a day, it was too much for some reason so me and my gp agreed alternating would be best'

Oh dear oh dear! Your doctors doesn't know much about thyroid, does he. Of course a TSH of over 4 is 'enough to increase levo'. It's much, much too high and is saying that you're still hypo.

Your TSH is supposed to drop significantly when you increase your dose. It has an inverse relationship with thyroid hormones, T4 and T3. So, if the T4 goes up, the TSH comes down. And there is absolutely no reason why it would be 'too much'. It's the least important test of the three, and your doctor should not be dosing by it. That's the best way to keep the patient sick. Is there any way you can see another doctor who might at least know the basics of treating hypo?

Aj2690 profile image
Aj2690 in reply togreygoose

To be honest I’ve only even spoken to my gp once about my thyroid and it was over the phone briefly. Otherwise the receptionist just updates me on what my new dose is. I only spoke to my gp when k said the higher dose made me worse so she just reduced it without much more investigation 😞

Im going to try and get a face to face tomorrow if I can and suggest I increase my Levo dosage back to 75mcg. Do you think from my results it looks likely it’s caused my Hashimotos?

greygoose profile image
greygoose in reply toAj2690

Oh, that's not good. You really have to be more proactive than that. You can't just assume that your doctor knows what she's doing or that she has your best interests at heart. Probably neither are true.

I've just seen your FT3 result. Well, that's what's causing your anxiety! Much, much too low. But, then, so is your FT4, so you absolutely need an increase in dose - several, probably!

Yes, you have Hashi's. Your antibodies are high. And there's absolutely nothing you can do about it. The only thing is that a lot of Hashi's people also have Coeliac Disease (gluten intolerence). So, ask to be tested for that. And, even if it's negative, try a gluten-free diet, anyway, to see if it has any effect on your symptoms. But, apart from that, the Hashi's just has to take its course.

Aj2690 profile image
Aj2690 in reply togreygoose

Thank you! I do have a slight intolerance to bread and dairy so I do my best to avoid most of the time. Will definitely bring this up with the doctors, thanks so much!!!

greygoose profile image
greygoose in reply toAj2690

Gluten-free has to be 100% to be effective.

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine are you taking

Same brand for 50mcg and 75mcg ?

Aj2690 profile image
Aj2690 in reply toSlowDragon

Changes every month unfortunately. Mostly teva but it does change alllll the time.

SlowDragon profile image
SlowDragonAdministrator in reply toAj2690

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free.

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

Aj2690 profile image
Aj2690 in reply toSlowDragon

thanks so much, I’ll definitely bring this up at my appt 😊

SlowDragon profile image
SlowDragonAdministrator in reply toAj2690

Work out which brand suits you best

Then get GP to add note to future prescriptions

You may need to try several pharmacies to get brand you prefer

Or use specialist pharmacies

thyroiduk.org/get-support/t...

How to specify brand of levothyroxine

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