How to tell my doctor I actually feel better without Levothyroxine?

[JonesTheAverage]

Hi everyone, I’m back after being away for a while from any type of deterrent…the more I read about hypothyroidism, the more I was getting consumed. Lot’s of amazing advice did not work for me, and I did not want to use these pages as my daily diary.

One thing I did is to ask for an increase in the Levo according to my weight, which my doc went with but blood test results came back as hyper after about 2 months, so that was a fail.

I had some hormonal imbalance issues thanks to the horrible contraceptive injection, that’s getting better now.

I’ve also been told (not sure if diagnosed) that I have IBS and possibly a stomach ulcer due to some horrible stomach pain I’ve had….all after having alleged gastro covid (started as a classic covid symptoms for a week, followed by 44 days of ‘lady D’ - diarrhoea).

Then to top it all up, my weight crept up, my hip started to hurt which caused some vile back pain (gentle exercise, daily stretches keeps it at bay). I know this back pain is due to the weight increase, because as soon I as drop under certain weight, the pain disappears too.

At one point I was full of drugs, that I kept forgetting to take Levothyroxine. Then I decided to rid my body of all that s**t (at that point I was a month in without Levo), and now two months down the line, maybe longer, I take no medication inc Levo….and I feel great. I actually feel amazing. I have energy. Weight is dropping off bit by bit. I have no mood swings. What is going on? I like tis ‘me’ but I’m scared to tell my GP all this, as they might consider it an act of carelessness and self destruction….but I feel great.

Then I read something about…basically if one’s thyroid is not damaged one might not need medication. And that it might be adrenals making one ill, not thyroid….I’m practicing ‘not worth a stress’ attitude at the moment, which is probably helping my adrenals, but I want to know more…why do I feel better? How do I know if my thyroid is the issue and if it’s damaged or not?

How do I now tell my doctor what I’ve done?

Thank you all xx

Dee

[greygoose]

Well, the obvious question here is: do you have Hashi's? I see in your first post that you had your antibodies tested. The results were inconclusive, but the TPOab were quite high, so it's a possibility. In which case, you could be on a 'hyper' swing, or just coming down slowly from one. If I were you, before saying anything to your doctor, I would get more tesint done - complete testing, as in your first post.

[JonesTheAverage in reply to greygoose]

Thank you for your input, I’m surely going to do that first 👍🏼

[greygoose in reply to JonesTheAverage]

You're welcome.

[SlowDragon Administrator]

Levothyroxine must be taken every day to be effective

Did you always get same brand levothyroxine at each prescription

IBS and acid reflux are common hypothyroid symptoms

Very common to feel better after stopping levothyroxine ….but it often doesn’t last

Bloods should be retested after 3 months

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) ….and after reducing dose

Low vitamin levels common as we get older too

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water (and last dose levothyroxine 24 hours before test)

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

[JonesTheAverage]

SlowDragon thank you too for your advice. As per your and greygoose ’s advice, I’ll arrange the tests first. I’ll use Blue Horizon this time to get a better picture. Would you advise on blood draw rather than a finger prick? I think it said somewhere that ferritin result from a finger prick cannot be as reliable…Also, I have been getting all sorts of different Levo tablets issued by my local pharmacy. It seems I felt the worst when I discovered I was given Teva brand, which I’ve reported via the Yellow Card. Oh that was vile, I was feeling really bad, bad, bad, bad. Since then I tried to avoid it like plague. When mentioned to my GP, well, I do not need to tell you what the look on their face was…..yes, what do I know….but cannot blame them though, they’re told to follow guidelines that are not as 🦋 friendly as they should be.

I was on Sertraline for a little while due to some stuff I was going through whilst suffering with hypo symptoms, and as soon as I realised they wanted to use it to make me quiet, I manned up and got myself off of it.

Thanks again and once I get my results, I’ll pop them on for some more pointers xx

[SlowDragon Administrator in reply to JonesTheAverage]

Ferritin results seem generally less reliable by post, possibly due to time delay between blood draw and test

….they seem to often give slightly higher results on postal kits than when processed straight away

But other results are consistent…via post kits

Personal choice if do DIY finger prick test or private blood drawn. If there’s a clinic near you and can get test at 9am ….it’s a good option. If paying more for nurse to your home, you need to underline that test needs to be 9am

[SlowDragon Administrator in reply to JonesTheAverage]

Government have had to issue clear guidelines on the fact different brands of levothyroxine upset many people

Medics and pharmacies have been gaslighting thyroid patients for years, despite research being absolutely clear it’s best to always remain on same brand levothyroxine

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. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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).

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

Teva contains mannitol as a filler, which seems to be possible cause of problems. 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)

Teva, or Aristo (100mcg only) are the only lactose free tablets

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

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

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

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...

[SlowDragon Administrator in reply to JonesTheAverage]

One thing I did is to ask for an increase in the Levo according to my weight, which my doc went with but blood test results came back as hyper after about 2 months, so that was a fail.

We can only increase dose levothyroxine SLOWLY upwards in 25mcg steps

Often not possible to tolerate full dose, especially if vitamins are low or gluten intolerant etc