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Finally a diagnosis, talk to me about Hashimoto's please?

(53 Posts)
MoreSnowPlease Mon 04-Apr-16 18:19:49

After 3 years of feeling awful I finally have a diagnosis of Hashimoto's. It sounds crazy but I am massively relieved!!

So, does anyone else have it? What do I need to know about it? I'm taking 50mg of thyroxine.

Pleasemrstweedie Mon 04-Apr-16 19:56:48

I don't have it, but I know many who do and it sounds as if you're on the right track with ax50mcg starting dose.

Make sure you go back in six weeks for a re-test. 50mcg is not even really a starting dose and most people end up on 125-150mcg.

For unbiased and knowledgeable advice, join the ThyroidUK forum at www.healthunlocked.com.

MoreSnowPlease Mon 04-Apr-16 20:01:52

Thank you, antibody sounded quite high to me at something like 450 so I'm imagining I might need to go up. Hopefully will start to feel a bit better though

MoreSnowPlease Mon 04-Apr-16 20:06:26

I wonder if anyone knows whether it's related to high pulse? I've got a neat monitor recently as i started to exercise and my general pulse when I'm moving round the house is 120 and when I run it goes to 190. I get chest pains as well. Could the thyroid issues be causing this?

FarrowandBallAche Mon 04-Apr-16 21:42:36

Glad you have a diagnosis.
What were your symptoms?

Corabell Mon 04-Apr-16 21:48:18

Hashimoto's can can a vast range of symptoms. Thyroid uk is a good website to seek some information on symptoms and related conditions.

You may want to check your iron, b12 and vitamin d levels - they are often lower in hashimoto's patients but good levels are necessary to make thyroxine work.

50mcg is a low but appropriate dose. Be aware that some people feel worse when they start taking thyroxine and it can take some time to get to the correct dose or even the correct treatment.

The GP is likely to focus on your tsh levels to change the dose. You should educate yourself about tsh and where you should aim for that to be by monitoring your symptoms, not just your blood results.

BombadierFritz Mon 04-Apr-16 21:51:58

You will need to take an active interest in this as otherwise you will only feel 50% better. You might need your tsh to be under 1 or even below range - but your gp might try to stop it 'in range' at 3 or 4
You probably have lots of deficiencies alongside - ferritin b12 and vit d need checking
It is now recommended you are tested for celiac as well

Corabell Mon 04-Apr-16 22:21:58

50mcg is a low but appropriate dose to start off with.

clarella Tue 05-Apr-16 14:13:34

Brilliant! You will feel better soon but remember that all things thyroid take a few months to fully settle, more if still titrating doses.

Always keep a record of the results, and if possible roughly how you feel. Muscle strength, thinking ability (eg can you multitask easily) sleep. In me, I know if I'm not on enough (but in range) as I get bunged up very easily (sorry! But a good barometer) - similarly I sleep less and food shoots through if on too much.

This is very helpful for both reflecting on at the time, deciding if you ARE on the right dose (usually on thyroxine Tsh should be 1 or just below to feel best. Some even slightly out of range), but also for reflecting on in the future - sometimes you don't know how much you're struggling till you really feel better if that makes sense?

A respected endocrinologist told me to do this via a British thyroid foundation meeting.

I think the BTF are very good, I've found them very helpful in the past, and are actually supporting discussion on combo treatment, even though this isn't usual NHS practice.

I definitely have found recently my iron (ferritin) really does have to be over 70 to feel well, and the others mentioned above are important too.

My personal experience of nearly 20 years of it is that, ONCE on the right dose, (and the others vitamin levels are good too I guess) exercise is important, especially keeping strong.

I guess I had it at a young age and always tried to do as my peers were doing exercise wise, but it was noticeable how quickly I became weak in my muscles if I needed a dose change (eg couldn't hold yoga poses, couldn't perform well in martial arts, legs of jelly). If my fitness and strength levels were at a greater level, there was less impact if that makes sense. Good for bone density too as hypo or hyper can affect it.

Lastly, get the BMA thyroid disease book by Dr A Toft, very helpful, and has a page in it about keeping Tsh low that can be waved under an awkward drs nose. Also has a list of medications etc that can hinder absorption of thyroxine. I've been caught out several times - often not in the medications list but is on the thyroxine leaflet (I never thought to check there iykwim). Grapefruit also actually can affect its processing (lessens it be 10% and remains for a few days).

Pregnancy- thyroxine must be raised as soon as bfp and Tsh kept below 2 in first trimester especially - this is very important. Nice guidelines on it but this is also helpful (also by Toft)

http://www.refhelp.scot.nhs.uk/dmdocuments/Endocrinology/Thyroid%20Function%20Testing%20in%20Primary%20Care%20Pregnancy%20Guidance.doc

clarella Tue 05-Apr-16 14:15:19

Yes also to celiac test. This can change in the future too if negative now, just to be aware.

MoreSnowPlease Tue 05-Apr-16 16:11:39

Ok so symptoms have changed over the last 3 years. I was originally diagnosed with over active thyroid tsh at something like 0.002. I felt really bad at that point, lots of mental symptoms, rage, depression, anxiety, confusion, memory loss, unable to concentrate, suicidal. Also, hyperactive, fast pulse, severe muscle pain, breathlessness, joint pain, eczema, swollen itchy hands, irregular heavy, long periods. I had just had my second child, I really was bad. Got treated with carbimazole and went underactive tsh about 90 but felt better mentally, just tired, muscle pain. Then went off carbimazole and no thyroxine as endo said it was 'just' post partum thyroid issues. Tsh went back to normal, also diagnosed iron (ferritin) and vit d deficient. Started treatment for them.

Ferritin now up to 30, vitamin d being tested, still taking iron.

Since taking the thyroxine I think I actually feel more tired! But I am on period so maybe it's that.

My dh read about it and told me that apparently taking iron can affect the thyroxine working? Also that drinking soya milk can also affect it. I do drink soya milk in a coffee, should I stop this? I hate dairy milk!

Thanks for all the tips, I'll read through them tonight smile

MoreSnowPlease Tue 05-Apr-16 16:13:01

Oh tsh level now only about 12 but the depression is back, that's what I went back for testing because of

MoreSnowPlease Tue 05-Apr-16 16:15:49

So, I'm pretty sure that things got bad with my first pregnancy. Will it have affected my children? The eczema and swollen/itching hands started in first pregnancy and they have continued the whole time. They just started to clear up with taking thyroxine! So I'm sure it's related and that I had thyroid issues while pregnant. And so now I'm worried that all my children's ailments are to do with that! Do they test children for the same thing?

FarrowandBallAche Tue 05-Apr-16 16:20:59

Thanks for posting your symptoms OP.

I've recently had a thyroid blood test and am awaiting results. I see the rheumatologist this week.

My symptoms are - always cold, major muscle and joint pain ( been diagnosed with fibro ) ibs, rash that looks like dermatitis herpetiformis ( celiac rash ) both blood and biopsy negative for celiac ( was gluten free at time of testing ) always always tired. Feel like my brain is foggy, can't function sometimes, irrational and very short tempered, palpitations, low blood pressure. Oh and massive anxiety.

Sick of feeling so terrible!

MoreSnowPlease Mon 11-Apr-16 09:32:59

Did you get your results farrow? I had loads of those symptoms sad hope they find out soon.

Is there any reason I would be feeling more tired since starting thyroxine? I'm falling asleep every day!

BombadierFritz Mon 11-Apr-16 15:14:14

Tsh of 12 is why you feel tired. You will need it under 2 at least and probably suppressed before you start to feel better

BombadierFritz Mon 11-Apr-16 15:15:35

Are you still only on 50mg???

MoreSnowPlease Mon 11-Apr-16 19:34:28

Yes still only 50mg, is only a week since I started. But I just keep falling asleep. Breathlessness back, aching muscles back. I've been lazy with my ferritin which may have caused both of those though.

Really 12 isn't particularly high for me, I was up at 90 at one point last year.

Feel so shit now, I just think I'm never going to find out what's wrong with me sad

MoreSnowPlease Mon 11-Apr-16 19:35:43

But what I meant bombadier is that the falling asleep in the day is a new symptom since starting the thyroxine. As if it is causing it?!

clarella Tue 12-Apr-16 10:22:20

There's a delay in anything thyroid symptom wise. Thyroxine has a half life of 10 days, plus the body needs to heal.

So generally you start to feel better anywhere between 2-6 weeks later, or longer if you've been very unwell.

12 is really not ok - I feel horrendous at 12! Was that before thyroxine?

I'm very much starting to notice the difference if having a much better ferritin level in me - I definitely notice the difference when it gets to around 50 (feel worse) and do seem much better when it's higher than that, but everyone is different.

MoreSnowPlease Tue 12-Apr-16 19:21:04

Yes, 12 is before thyroxine, but like I said, I've been at 90 before and I could still function. It was far worse for me when it was overactive.... That was hell.

My ferritin is now at about 30. Up from 13. Increasing that has helped a lot.

I think the issue now is that my b12 and vit d are probably low too. I've ordered some decent supplements.

What I don't understand is that as soon as i go off the supplements (ferritin, vit d, b12) for around a week, all the symptoms come flooding back. If like I'm not absorbing vitamins from food or something.

I definitely noticed some changes as soon as I'd taken a couple of days of thyroxine. Only that I was quite clearly swollen (face and hands) and that has gone now. So maybe my body's fixing one thing at a time!

BombadierFritz Tue 12-Apr-16 19:39:43

Your body cant really do anything with the vitamins unless your thyroid is working. It isnt really about your tsh, its about your t4 and t3, so maybe before your thyroid was working overtime and tsh going mad trying to get it working, whereas now your thyroid has just kind of died and you have less t4 and t3 even though your tsh is also lower. Who knows? It aint all about tsh though, i can tell you that!! My tsh has never been more than 12 but at 12 i slept for 3 hours midday, was freezing, could barely speak or think and was just zombified. I dont feel well unless my tsh is completely suppressed

BombadierFritz Tue 12-Apr-16 19:40:36

You wont be making vit d naturally yet either as its only just the right time of year but the weather is crap

horseygeorgie Tue 12-Apr-16 19:46:22

My DB has it. He had the same problems with diagnosis etc made worse as he is a pilot and very nearly lost his licence over it. He had to pay to go private but eventually found a very good Doctor who tested him. He is on medication and is a lot better but still has rough days.

Corabell Tue 12-Apr-16 20:25:11

It is entirely possible that you don't absorb vitamins from food - nutritional deficiencies are common in people with hashimoto's because it affects cell function throughout the body and often suffers have issues with digestion/ absorption.

It's really early days, it's common to feel worse before you feel better and just because your tsh is lower (12) than it was (90) won't mean that you feel well. That will happen when your treatment is optimised.

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