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Original poster

Hashimoto's Thyroiditis, anyone?

44 replies

Spellcheck · 26/04/2017 22:07

Diagnosed 5 years ago after a couple of late miscarriages and lots of hassling of GPs. It's a weird one, flaring up every so often. Sometimes GP says I no longer need Levothyroxine, then when I have a flare-up it takes a month or so to get the GP appointments and blood tests sorted, by which time my neck is huge, I feel horrendous and have stacked on the weight.
I've recently been reading about the effects of gluten on Hashimoto's, as they reckon one AI disease can sometimes lead to another. I have to say, since cutting out gluten, my symptoms have all but vanished... I'm currently on 25mg Levothyroxine, and feel amazing. Fingers crossed it lasts!

OP posts:
LineysRun · 26/04/2017 22:09

I honestly thought you weren't meant to stop and start Levothyroxine?

Original poster
Spellcheck · 26/04/2017 22:40

Hi Lineys, I agree. I take the Levothyroxine, then my TSH/T4 tests are within parameters, which means the thyroxine is working, does it not? Then he says I don't need it any more because all is normal, and stops my prescription. Inevitably, the whole stupid cycle starts again. This isn't the only GP who has done this. Fuckwits

OP posts:
thereinmadnesslies · 26/04/2017 22:53

Cutting out gluten has definitely helped my hashimotos.

MichaelSheensNextDW · 26/04/2017 23:17

Your GP is a liability. You will need levo for life as the antibodies are slowly destroying your thyroid function. The aim of levo therapy is to restore normal levels - which then need to be maintained. I am so shocked to read what they're doing to you!

LineysRun · 26/04/2017 23:28

That's what I understood, Michael.

TheSecondOfHerName · 26/04/2017 23:33

I have Hashimoto's. Having had it for 22 years, I have learned what my TFT results need to be in order to feel well enough to function, and thankfully my GP is enlightened enough to realise this. I am settled on a levothyroxine dose of 150mcg. Every time I've tried to reduce it to 125mcg, the TFT results are still 'within normal' but I have to cut down my hours at work (already part time) wear eleventy-million layers and sleep most of the time.

sastott · 26/04/2017 23:35

Hi, I was diagnosed with an uderactuve thyroid 3 years ago and have been on levothyroxine since. I have been told I will have to take them for life. I had my 2nd 6 weeks ago, and after having to up my dose in pregnancy, have gone back to my original dose of before pregnancy. I've just had my 6 week check up at docs. I told them I needed my levels checking but they were in no rush to book me an app to get my bloods done! I do think that you get over looked when having thyroid problems, I'm sure I've I've had it all my life but have never been properly diagnosed even though I had blood tests to check in previous years.

Crumbs1 · 26/04/2017 23:41

The reason people with hypothyroidism get free prescriptions is because you need it for life. Odd to be stopping starting but then you're on such a low dose maybe you're borderline.

Teabagtits · 26/04/2017 23:53

Gluten free didn't help me at all. Made absolutely no difference. I have/had hashimotos and would gain and lose weight with no triggers. Then I stopped losing weight and am only hypo now.

It's also worth noting that gps tend to only care if your tsh is outwith the local reference range. I get symptomatic when my tsh is over 2.8 which is well within reference range so loads of gps I've seen won't amend my levoT if it's within reference range but outwith my normal and I had to go to an endocrinologist at hospital before someone listened.

beingsunny · 27/04/2017 01:16

Hi, I have hashimotos too, gluten free didn't work for me, however sugar free made a huge difference.

It varies a lot from one doc to another what their understanding of this is as it's quite complex.

I recommend reading Living Well with Hypothyroidism, it's really informative and you will be able to reference it and ask the right questions which helped improve my care.

At jo point should you stop taking your meds, you are only being tested to ensure you are taking the right amount it's not something you can recover from (well not impossible but I think major major lifestyle changes can make it's slightly possible).

Find out what your GP considers normal range for all your levels and ensure they test for number of antibodies too, often this is left out,

Good luck and fee free to PM me if you like

joyome77 · 27/04/2017 09:15

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EssentialHummus · 27/04/2017 09:25

Your GP is a liability. You will need levo for life as the antibodies are slowly destroying your thyroid function.

This x 1000.

AuldHeathen · 27/04/2017 14:14

I have Hashi's too. Began treatment about 10 years ago but was 'borderline' for at least the previous 8 years. Now on 225 mcgs levothyroxine per day and it seems okay. Have several other AI conditions - not sure whether to put all in one post or join about 6 threads.Smile

My teenaged son has underactive thyroid too. Oddly, he has negative antibodies which suggests it isn't Hashi's but some unusual type of thyroid it is. He is now doing well on 100 mcgs levothyroxine and his goitre has reduced considerably to 'medium sized'.

Patchouli666 · 28/04/2017 07:40

I am on natural dessicated thyroid. I have hashimoto's.
Have a look at the book by Izabella Wentz (or Wertz) on Amazon. It's all about hashimoto's and is great.

Okite · 29/04/2017 07:45

I am starting to suspect I may have a thyroid problem and as I already have a couple of autoimmune conditions, wonder if it's hashimoto's. At the moment it feels like I'm going to the gp with several different things and no one is joining the dots. My tsh isn't particularly high though, it was 2.5 at the last test. But the gp now thinks I have carpal tunnel syndrome and raynauds, I'm having palpitations and joint pains and am always knackered and my periods have gone completely haywire. I'm sure there's a link between it all!

tanyadm · 30/04/2017 19:50

I've had hashimotos for 13 years, co-existing with pernicious anaemia. My 7 year old daughter was diagnosed in February, with antibodies over 1,000, and is being investigated for co-existing arthritis and Raynaud's.

Wombletor · 03/05/2017 18:29

I've had hashis since 2010 and it stabilized when I was diagnosed with coeliac in 2013 and I started to feel human again.

I take 100mcg and my tsh is suppressed just below 1, which is the level I feel best at. A good endo will treat how you feel rather than just look at the numbers. I agree with pps that you need medication daily, rather than stop and start. Your gp sounds ill informed.
I also take a good multi bit as often thyroid suffers are deficient in iron, b12 and vitd.

Original poster
Spellcheck · 06/05/2017 08:08

I definitely agree with an endo treating how you feel rather than just looking at blood tests. It's clear that everyone has their own "right" levels, and different things work for different people. Someone upthread mentioned low sugar - that definitely works for me too! I'm currently in week 2 of low sugar and feel amazing, and my delightful goitre has reduced slightly.
Pins and needles in my hands, fatigue, and cold intolerance are the first warning signs for me that my thyroid is beginning to pack up, that's when I go and see the GP who all but rolls his eyes, and that's the point at which my endo says I need to up the levothyroxine. This condition is definitely not fully understood by GPs.

OP posts:
Original poster
Spellcheck · 06/05/2017 08:09

...and yes to B12 and other vits, Wombletor.

OP posts:
Wineandcoffee · 06/05/2017 08:15

Every time I've tried to reduce it to 125mcg, the TFT results are still 'within normal' but I have to cut down my hours at work (already part time) wear eleventy-million layers and sleep most of the time.

I also have hashimotos - It took years to get diagnosed and I went to part time work to cope. I eventually found a GP who was happy for my TSH to be kept near one and I have been able to return to work full-time. The GP has just retired and I am terrified that any new doctors will try and cut my dose.

Sparkletastic · 06/05/2017 08:25

Your GP is not competent to treat your condition. Get a new one.

awaynboilyurheid · 08/05/2017 20:28

Agree that is terrible taking you off it and then back on is not the way to treat hashi's I am also gluten free have hashimoto's but take NDt

I think 25mcgs is a really tiny amount of levo to take but if you are feeling better then perhaps your antibodies have reduced due to Gf.

ErrolTheDragon · 08/05/2017 20:49

My DH has it (I believe it's rare in men) - he's had a couple of periods where it seems as though his thyroid is more active (which can trigger episodes of his atrial fibrillation) but this is followed by a crash and then he has needed his dose adjusting upwards. His usual GP is good, but occasionally he has to metaphorically beat others over the head with the literature and explain basic concepts such as half life ... How people who aren't PhD chemists are expected to deal with some doctors eludes me.

I now have boring menopausal female hypothyroidism, so we're both on levo for life now.

Okite · 09/05/2017 09:02

which can trigger episodes of his atrial fibrillation
Ooh, can you tell me more about this Errol?
I'm waiting on a diagnosis at the moment but I have periods of palpitations/rapid and very irregular heartbeat. Initially put it down to B12 deficiency but am now well topped up with B12 and still get them.

ErrolTheDragon · 09/05/2017 09:26

He had a diagnosis of atrial fibrillation before he associated it with thyroid activity - I'm not sure whether something else triggered that and made him more sensitive or what.

I've forgotten exactly how the AF was diagnosed - I think it has to be caught on ECG during an episode.