Recently Diagnosed with Hashimoto’s Disease - Thyroid UK

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Recently Diagnosed with Hashimoto’s Disease

HashimotoBro profile image
44 Replies

Hi ladies and gents,

This is my first time posting here, so here goes:

I’m Daniel and I’m 34. I was diagnosed with Hashimoto’s thyroiditis around a month ago.

I recently began something of a health kick, which represented the third time I’d tried to quit alcohol (I’ve drunk extremely heavily since a teen and even had a stint in AA). I’d always gone back to it l because I never felt particularly fantastic even when not drinking, and so it seemed to make sense. Now, I feel utterly stupid because I suspect the alcohol use was masking my Hashimoto’s (I always assumed I was just low-level hungover all the time).

This time I was more determined, so, four months ago, I managed to quit multiple substances by sheer dumb willpower. I quit alcohol, antidepressants (citalopram taken since I was 19), nicotine vapes and cannabis (used heavily for just over a year). I had had a strange relationship with substances due to depression; I even have a problem with coffee (I’ve since managed to reduce intake substantially).

On this health kick, I started hitting the gym and eating a bit more reasonably (not that well in retrospect since I’ve been learning more about nutrition and realise this to be so now). I wasn’t sleeping that well until recently (still not very well actually), which I attributed to the cannabis withdrawal.

Either way, I wasn’t feeling that much better for it all. So, I started hitting vitamins and supplements, and eventually went to get bloods done. I had high TSH, very low vitamin D, low B12 and was anaemic. Further tests showed thyroid antibodies and a diagnosis of Hashimoto’s thyroiditis was given.

Since then, I’ve been going down a rabbit hole of diet, etc. The doctor said no gluten, dairy or soy. So, I tried this and ended up also cutting out nightshades, and have now loosely ended up on AIP diet, which is causing a lot of stress to fit around work (I’m a homeroom teacher.). It’s all become a bit miserable and fraught.

I’m convinced my gut needs some work, as it’s not right. It hasn’t been for a while, but I’d assumed it was the alcohol. Different foods seem to send me up and down like a yo-yo. Frankly, I’m surprised a person can be that sensitive to food. I had never been a fussy eater.

I’ve heard stress is related, and stress does seem to be a factor in my life as a teacher. I’ve started paying attention to my body more and stress seems to cause pain in joints. I have some pain in knuckle joins on my left hand and foot. I also seem to have a kind of lump in yet another knuckle.

A few questions…

Am I being too strict about diet? (I’ve been agonising over it)

How long does it take to “heal your gut”?

Can I ever have gluten again?

Should I go on thyroid hormone? (I basically said I’d think about it and haven’t been back to the doctors since - I’m not a fan of doctors per se)

I appreciate this is a lot, and I’ve also likely left a lot out, but thanks in advance!

Dan

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HashimotoBro profile image
HashimotoBro
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44 Replies
HealthStarDust profile image
HealthStarDust

Welcome to the forum.

I’m sorry no one has been around yet to respond. This is an extremely busy forum.

Well done on all your efforts of looking after your health, and sorry your recent diagnosis was the end result. I can relate.

I don’t know too much about it, but I highly suspect that using and withdrawing from psychotropics as well as alcohol and other substances disrupts the thyroid. There’s every possibility that you was badly self medicating your undiagnosed thyroid disease and it was more able to reveal itself once you started cleaning living, so to speak, and there’s also every possibility any disruptions including the withdrawals caused the thyroid disease.

Unfortunately, as I have discovered, the thyroid is a woefully under researched area in my view. So, I’m afraid, no one else will know much about it conclusively either.

In terms of considering treatment, think about the symptoms you have and if they can be thyroid related and if you wish to treat it with the hormone. Also think about possible complications of an untreated thyroid disease and what you want from life. There are of course people who don’t use the hormone and advocate changes to lifestyle only to manage the thyroid disease, however, I doubt you will find many of them on such forums.

Whatever you decide, know that optimising treatment and dose on hormone treatment is no easy task for many and symptoms can get worse before they get better. However, many don’t have any such negative experiences either. I even met one of such people and I looked at them with envy!

Now that I have responded hopefully that’ll bump your post and you’ll get more responses.

HashimotoBro profile image
HashimotoBro in reply toHealthStarDust

Thanks a lot for your reply. It’s okay; I had figured people would be busy. I appreciate your time.

It had certainly crossed my mind that all the abstinence shocked my thyroid though I wonder if that could explain the antibodies?

You happened to say something else I also suspect - that I have been self-medicating low mood and energy to make myself feel better essentially. It’s also entirely possible that I ended up on antidepressants because the doctors were barking up the wrong tree.

Anyway, thanks again!

HealthStarDust profile image
HealthStarDust in reply toHashimotoBro

The antibodies… again, yes, certainly. The fact that you ended up on psychotropics doesn’t necessarily mean you had thyroid disease, in fact, some psychotropics are know to cause it. Thus, I highly suspect the cause it self could be the psychotropics or at least they play a role in catapulted the thyroid to a diagnosable state.

thyreoidea profile image
thyreoidea

Welcome to the forum. Well done for turning your life around, it couldn’t have been easy. As you say the shock to the system may have contributed to your out of range readings but not sure about your antibody ones, did your GP discuss this with you. you could post your blood test results on here for reference. Is there a reason that you were not given Levothyroxine depending on your out of range blood results?

TiggerMe profile image
TiggerMeAmbassador

I'll pick up on the lumps on your hands, could it be high cholesterol? I caught an article the other day which mentioned this as a physical sign... high levels are certainly connected with being hypo.

If you have any blood test results you could post them up 🤗

I cut out all the same dietary things as you, except I find I can cope with gluten just not barley... especially malted

HashimotoBro profile image
HashimotoBro in reply toTiggerMe

I really appreciate the reply. I'll post up the results in a second! I hadn't heard about the potential relation to cholesterol, but I did hear that if you have one autoimmune disease, you can have smatterings of others, so I considered something like low level rheumatoid arthritis. My ex-colleague had it and she similarly had a raspy voice like me (I'd previously thought this was related to vaping.)

Wired123 profile image
Wired123

hey bro, I too got diagnosed quite young (mid-20s). All I would say is use the doctors for testing and getting on the right Meds, as that’s what they are there for. That’s only one part of the journey, the rest is down to the research that you do and how you apply lifestyle changes to make you feel better. You’re already doing well with diet and coming off the toxins, once you sort out your sleep, stress, and some light exercise in you will feel the difference.

Ultimately don’t rely on doctors too much but do engage with them as mentioned above.

Unfortunately if your thyroid is damaged you’re not going to have enough hormone and will always feel worse, so it’s a must to take the medication.

I know what you mean about trying to fill a gap when you have low hormone, I was always stuffing myself with high sugar foods to Rev myself up until I finally got diagnosed.

HashimotoBro profile image
HashimotoBro in reply toWired123

Hey man, appreciate the reply. I was shocked, as I thought it was the type of thing only an old lady might get. I'm currently in Thailand working, but I just quit my job to head home. Things should be a little easier with doctors, food, etc. back in the UK.

I have found that the advice from doctors is all over the place; I even met someone who went to a doctor who advised her that diet plays no part in it. Based on my research so far, that's absolute rubbish.

Luckily, I've been able to do pretty well with lifestyle. I was already on the health kick and have so far lost almost 10kg. I weighed in at 81.2kg this morning. I've managed to do that through low-carb, gym and intermittent fasting (8-hour feeding window). Funnily enough, I don't know if you've noticed something similar, but I have found that vigorous exercise (as opposed to light) actually seems to make me pretty ill.

By the way, the low-carb diet and fasting, etc. seem to have balanced my mood quite substantially too.

Wired123 profile image
Wired123 in reply toHashimotoBro

I would have thought fresh, clean Thai food and sunshine would be better than the packaged, processed supermarket junk we eat in the UK! I’ve never been to Thailand so am only guessing.

Diet is the big difference after the meds, if you can afford it I would go private as your GP will likely put you on a slow road to recovery. Private Endos should get you better quickly and put you on the right dose.

As for exercise, I think we just have to slowly build up our stamina, maybe even more cautiously than someone without thyroid disease. I do an hour of weights 3 times a week but it’s taken a long time to get to that level. I used a personal trainer to help me, which is great because they can push you more than you might push yourself but are also mindful if you’re flagging. Some weeks I’m able to do more, some weeks less - a lot of it is impacted by diet and sleep quality.

HealthStarDust profile image
HealthStarDust in reply toHashimotoBro

“vigorous exercise (as opposed to light) actually seems to make me pretty ill.”

Prediagnosis, for years even the slightest exertion involved in every day household tasks left me incredibly breathless. Then more nearer diagnosis it appeared to have gotten a lot better when I could begin to take easy walks again. Then, since diagnosis and optimising dose eventually the breathlessness has gotten worse. Seems to be getting better again as I hopefully get to the right dose. However, I will get sudden symptoms after some exertion such as going to the shops. Aches, joint pain, and instant fatigue crash!

Suffice to say, I think exercise uses up a lot of the thyroid hormone and if you don’t have enough already be that naturally or through treatment it’s going to have an impact.

I have read on the forum about this a few times and there appears to be a link.

As for food, I’ve made multiple life style changes and I was accustomed to there prediagnosis anyway, and what strikes me is how ill I become if I have more than a dash of soy milk. Same result as exerting myself above.

Take it easy with exercise.

P.S. Advise is all over the place with GPs here too. But, you can find a GP that will work with you better than private endocrinologists in some cases. It’s hit and miss, but do your research and if your do start the with the hormone replacement route, I would establish what you want from the treatment with the prescriber from the outset.

arTistapple profile image
arTistapple

The perennial question with hypothyroidism. Chicken or egg? Dare I say the male of the species, in the main, turn to self medicating their situation with alcohol and street drugs (incl steroids) and alternatively the female of the species try to get their doctors on board. Both systems are mainly crap. I like what Wired123 says. Get your hormones from the medics but apply yourself to the rest of the necessary programme, diet, supplements etc. I notice both men and women often hit the gym too (me too) to their ultimate detriment. The forum is the only place I am aware of which educates us on our thyroid conditions. Doctors NEVER.

HashimotoBro profile image
HashimotoBro in reply toarTistapple

Appreciate that. I've come to a similar conclusion as you: After plenty of my own research (I'm not the smartest guy in the universe, but I know how to interpret a journal study, stats, etc.), it seems doctors are massively undereducated on this issue. Certainly they know almost nothing about nutrition. The doctor who diagnosed me did mention gluten, dairy and soy, but, as I've discovered, that's the tip of the iceberg. I seem to have an issue with nightshades, corn, and a whole load of other things that I suspect, but haven't been able to pin down. It's worth mentioning, I've never been a fussy eater or anything prior to this.

Interesting you mention the gym; I just mentioned to someone else that vigorous exercise seems to absolutely destroy me and make me sick for days. It's a real pain in the backside because I like to go crazy on the treadmill to blow out the cobwebs.

HealthStarDust profile image
HealthStarDust in reply toarTistapple

As a female, I can say I was happily self medicating both in destructive and non destructive ways even with involvement with GPs and specialists precisely because they were so rubbish.

arTistapple profile image
arTistapple in reply toHealthStarDust

I can see from your posts you have been working hard on your situation. I have no doubt many of us have strayed into self destructive ways of self medicating. I wonder too about the many self destructive contributions which are camouflaged by other behaviours? There is a lot being written about the “Wellness Industry” at the moment. Seems it’s not all it’s cracked up to be. Now there is a surprise. If our experience with our ‘Health Service’ is anything to go by, that falls into that category with a big clunk also.

arTistapple profile image
arTistapple

Yup going to the gym does seem to fall into the category of ‘doing the right thing’ but really examine your behaviour. Why are you doing it? Belief that it’s doing you good, when really it might be further damaging you until you sort out the hormones. When I was young we played sport which was brilliant but the gym life is not nearly so attractive. Although it’s playing against yourself and I have found that makes it so easy to overdo it.

HashimotoBro profile image
HashimotoBro

1st page.

Labs1
TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

Low Vit D ideally get it to around the 100 mark. Pick one with K2-MK7 which helps calcium get to your bones, I use a sublingual to avoid stomach and it is often better absorbed that way

No nasty excipients just black seed oil
HashimotoBro profile image
HashimotoBro in reply toTiggerMe

Luckily, I was put in touch with a friend of a friend, and he put me on some. I’m taking Now Mega D3 + K2. I’d also heard sublingual may be better though, so perhaps I should switch?

Interestingly, the same guy mentioned he saw remineralisation of his teeth. I’ve always looked after my teeth, but they’ve declined faster than I’d have hoped. I now think this could be relayed to some of these deficiencies.

SlowDragon profile image
SlowDragonAdministrator in reply toTiggerMe

Vitamin D is 34ng/ml ,,,,,,NOT 34nmol

So that’s not too bad

Aiming at least 40ng/ml (equivalent to 100nmol)

HashimotoBro profile image
HashimotoBro

2nd

labs2
TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

Terrible B12 again grab a sub lingual and aim for top of range, you can do a loading dose with B12 and Vit D for a month or two and then test and drop it back to a regular dose

TSH would put you into the sub clinical bracket here but you are certainly Hypo and the low vits and mins go hand in hand with poor absorption due to being hypo

HashimotoBro profile image
HashimotoBro in reply toTiggerMe

To be honest, had I have felt fine and dandy when I received this initial TSH result, I’d have turned my nose up at it and gone no further (initially I had fewer tests done and later more with the same blood sample). From reading other forums though, it seems like some people can have crazy levels and feel sort of okay, and others can look not so bad on paper and feel like rubbish.

TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

You may find things improve once you optimise your vits and mins to aid your thyroid, adding in a good B Complex like Thorne Basic B or Igennus Super B once you have got your B12 up...I don't recall seeing a full iron panel? We often struggle with low iron...

HashimotoBro profile image
HashimotoBro in reply toTiggerMe

I don’t believe a full iron panel was done, but the doctor did say this:

Doctor’s email
TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

Worth getting tested for anaemia before starting B12 it maybe that you are going to need B12 injections once they have checked for intrinsic factor

HashimotoBro profile image
HashimotoBro

3rd

labs3
HashimotoBro profile image
HashimotoBro

4th

labs4
TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

Nothing standout here... no idea what blood urea nitrogen is about 🙃

HashimotoBro profile image
HashimotoBro

5th

labs5
TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

Cholesterol seems OK

HashimotoBro profile image
HashimotoBro

6th

labs6
TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

Grabbed this explanation from Medichecks... have you been checked out for coeliac or Crohn's? Might tie in with the stomach issues?

HashimotoBro profile image
HashimotoBro in reply toTiggerMe

I’m so glad I came to this forum. I did a whole tonne of research, but things keep coming up. So, here’s the deal: My stomach has been dodgy for years. I know it sucks to have talk about this stuff, but I’m talking about diarrhoea essentially.

Again, I assumed it was a combination of alcohol, nicotine and living in China until very recently. I lived in China for many years and the diet is very different, of course. Also, it’s nothing like what we call Chinese food back home. The Thai diet is similarly saucy and spicy.

Now, I’ve been shocked by how sensitive I am to food. The only thing that got my stomach right is eating only meat. I recently had to do this because I went on a trip with friends and couldn’t eat a lot of the food available, so I was constantly eating hunks of roasted pork, and occasional bananas.

Furthermore, my half brother has Crohn’s disease. I’m convinced I have one or the other, but I wasn’t lead to that idea through those readings. So, you’ve added some important extra depth.

Any idea how you know whether you have one or the other?

TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

You will get a load of brilliant advice here, certainly put me on the road to recovery 🤗

Possible that the diet would have exacerbated the issue with soya and seaweed being thyroid disruptors and high in iodine

Don't really know about diagnosis I think it comes down to a colonoscopy for Crohn's and endoscopy for coeliac?

Worth investigating with the family link

HashimotoBro profile image
HashimotoBro

7th and final

labs7
TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

Double positive for Hashimoto's Thyroiditis, so your thyroid is under attack

HealthStarDust profile image
HealthStarDust

The only thing I will add is in the UK, medical professionals may want you to have two over range TSH (above 10) or between the upper reference range and 10 several months apart if you have only had one TSH result and are not currently on treatment before the consider diagnosis and treatment.

HashimotoBro profile image
HashimotoBro in reply toHealthStarDust

To be honest, I’m not coming back because of better healthcare as such. Healthcare is Chiang Mai is renowned for being pretty solid. I’ve been teaching for around a decade and abroad for most of that time. My grandfather died a few weeks ago, and I know it’s difficult for my grandmother with me being overseas (we’re extremely close because my mother was a young single mother). I’m also not coping with the stress of the classroom anymore; I used to thrive on it, but now I get in the class and just want to be somewhere else.

A word about stress: I have read that there can be a link between Hashimoto’s and adrenal fatigue. I’ve noticed something happening to me: If I have a stressful moment in class or a near miss on the motorbike (Thai roads are deadly), I can literally feel my adrenaline fire, and then I sort of swoon like a maiden fainting in the arms of a prince. Weak at the knees type stuff.

TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

Certainly sounds like your adrenals are struggling to keep holding things together, I'd have a full on whitey, sweating, shaking, sugar crash.... Vit C and salt are essential for adrenal function

HealthStarDust profile image
HealthStarDust in reply toHashimotoBro

Yep, stress and hormones don’t mix either. What you describe is familiar to many of us I expect.

HashimotoBro profile image
HashimotoBro

Sorry folks, I’m posting a lot and taking a lot of your time. It’s just a huge relief because, if I try to explain Hashimoto’s and new diet to people around me, they mostly just treat me like I’ve lost my mind or am making it up. I can look out for myself generally speaking, but this one has got me feeling pretty lonely, to be honest. I’m sure you all know what I mean.

TiggerMe profile image
TiggerMeAmbassador in reply toHashimotoBro

We all come here as the shared understanding is great, diet wise I'm thinking you must be near enough keto already, you might find Dr Myhill suits you... drmyhill.co.uk/

HashimotoBro profile image
HashimotoBro in reply toTiggerMe

Will check it out.

HealthStarDust profile image
HealthStarDust in reply toHashimotoBro

Yes, I’m sure many, me including do! It’s what we are all here for, so nothing to apologise for.

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