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Hashi's - working with this?

(32 Posts)
KinkyDoritowithsparkleson Thu 25-May-17 08:45:23

I'm a teacher but I can't teach. It's not the most relaxed of professions: I was teaching up to 23 hours a week and then held additional responsibilities too. I was doing an 80 hour working week most weeks.

I crashed and burned big time. I had a fibro DX, but then they discovered the thyroid antibodies. I started on a low dose of Levo and now I'm up to 100mg. I'm feeling better than I did, but not great to be honest. I don't think I've had a day where I felt that I had a decent amount of energy in years.

I really miss my job. I need to be strong and resilient in order to cope with it though as it is crazy full on.

How do people manage work? Are there any teachers with this condition? I'm looking for positive stories or advice because, frankly I feel like my life is over at 38. I feel like all choices have been taken off me.

MiniMaxi Thu 25-May-17 08:47:27

I don't want to oversimplify things as everyone is different. But I was diagnosed with Hashimoto's 20 years ago (aged 15) and I can honestly say I have felt totally normal for the vast majority of that time.

They need to get your dose right and keep monitoring you to adjust it as required. Ask for a referral to an endocrinologist if you haven't seen one already. GPs don't always understand all the nuances.

Hope you feel better soon.

ErnesttheBavarian Thu 25-May-17 09:05:05

I also have Hashimotos and coeliac disease. Both are autoimmune diseases. There's a lot of evidence to say gluten is a big enemy with all autoimmune conditions. Also, if you have one AI disease, you are more likely to have another.

In your situation, I would request a test for coeliac disease. If it is negative, I would then try going GF (very strictly) and lactose free. DO NOT go GF before a test for coeliac disease, because it would likely give you a false result. Def. get tested, then rule out gluten. Try either a low FODMAP diet, or even Ketogenic. I was recommended the kept diet by a doctor and it has made a huge impact on my energy levels and mental clarity. also my allergies hayfever etc.

There is a lot of literature to say GF diet has a v. positive affect on well being in Hashimoto sufferers.

Finally, I have been recommended this book, which will help you understand your condition better.

Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment by Janie A Bowthorpe

PS I am a teacher, mother of 4, was dx in 2012 with both, and didn't really feel any better until I started Keto. Made a huge difference, but only when I followed it very carefully, using MFP

Good luck

Auchan Thu 25-May-17 09:07:59

Have a read of a book called The Wahls Protocol, it's about MS and other autoimmune issue being treated by paleo/keto.

I went keto too. Got me off all meds and I have no AI markers at all now.

ErnesttheBavarian Thu 25-May-17 09:13:27

interesting Auchan - how long did you do keto for?

Auchan Thu 25-May-17 14:47:43

I'm 15 months on keto. It's for life, I won't ever go back to standard "healthy" diet.

KinkyDoritowithsparkleson Thu 25-May-17 16:34:52

Thank you all for your replies. I must admit to being nervous about following a keto diet; I did less than 20g carbs a few years ago. I lasted about 6 weeks and it made me really ill. I was dehydrated all the time, no matter how much water I was drinking. I was literally having pints and pints a day, but still felt rough. It was Atkins. Is there a difference? I've done paleo in the past for a few months, strict, like Whole 30 but it didn't do much for my energy levels. Saying that, it was before my thyroid DX and meds. I wonder if the two in conjunction would help.

I've bee strictly gluten free for a couple of weeks, so assume it will take time to heal. I've cut dairy - should dairy avoidance be as strict as gluten. I'm only asking because I've still had splashes of milk in drinks when out. I'm on no added sugar, no soy, no vegetable oils as much as can be avoided (they're in capsules). I'm supplementing iron and a vitamin B complex; my Vit D is good atm and I'm going to start Co Q10 to see if that helps.

I'm open to trying anything now, to be honest. I know I am past having a choice and I am really, really sick of feeling sick.

KinkyDoritowithsparkleson Thu 25-May-17 16:35:52

typos galore! grin

KinkyDoritowithsparkleson Thu 25-May-17 16:36:56

I cut eggs too.

ErnesttheBavarian Thu 25-May-17 17:27:43

Atkins isn't ketogenic diet. keto and atkins are not the same. keto is high fat but moderate protein, whereas atkins is pretty high protein. high protein will also knock you out of ketosis and is not that good for you.

I used MFP to ensure I stuck to the ratios of 10% carbs, 25% proteins and 65% fat. once I got into it, it was easy (especially as I have so many restrictions anyway) and I felt so much better than I have done for years.

Regarding the milk, I am now strict. Tea was also my downfall. I have tried many alternatives without success, when finally I tried soys cream, meant for cooking. It tastes pretty good in tea, has a good consistency, doesn't curdle, and is in a small carton, so easy to pop into bag.

Auchan, can I pm you re keto, or can you pm me re your average diet. I could do with help/some clarification from an expert!

KinkyDoritowithsparkleson Thu 25-May-17 18:25:58

Thanks Ernest. I was the darkest possible shade on the keto sticks, I remember that! The rest was a blur. I will look into keto. It actually sounds like it would be like paleo for me, where a lot of my calories were coming from fats like olive oil, coconut oil and olives. I was also eating avocados, although I know they are carby. I think I'm finally settling into the idea that permanent change has to happen - in the past a diet was solely about weight, but I'm past caring about that now.

Pleasemrstweedie Sat 27-May-17 20:22:07

100mcg is not much more than a starter dose. You may just need more thyroxine.

Haggisfish Sat 27-May-17 20:25:16

Can I ask what your thyroid results were? Were you medicated because of antibodies only?

KinkyDoritowithsparkleson Sat 27-May-17 20:54:07

TSH is currently 1.2, so I've been told no more thyroxine. No idea what antibodies or T3/4 are as not tested. I had antibodies last summer and fought to be medicated as I was subclinical but getting lots of symptoms. (TSH had been elevated the summer before, but improved itself when I sorted vitamin D deficiency.) I was given 25mg, then saw an endocrinologist who put me up to 50mg saying that he would treat my symptoms rather than bloods. Had a massive crash about Feb/March and felt the worst ever - TSH had started to head upwards and was about 5.6, so meds put up to 100mg and I've been on that dose for about 2 months now. Last bloods were 1.2 and I was told that it is now okay. hmm However my liver function was off, so had that retested a couple of days ago and results are next week.

I haven't got a clue what I'm supposed to do or what I should be asking for. I'm tempted to go private, but we can't really afford this easily with me losing my job. sad

KinkyDoritowithsparkleson Sat 27-May-17 20:55:25

I'm hmm because I don't think I'm okay, though better than I was. I still wouldn't be able to do a full day at work.

Inbetweenus Tue 30-May-17 08:48:31

You absolutely need to know ft3 and ft4. TsH cant give a full picture. You might me lije many of us who don't convert t4 to t3 very well and need addition t3 meds as levo will never make you optimim if you have that issue. Horizon medicals do a full check called thyroid 11 i think. You can do it at home. I think Thyroid Uk do a discount on their website. Annoyingly, GPs dont test ft3 but endocrinolists do if gp will refer you. I private test is the quickest way to get a full picture though as it test all the vitimans often effected by this.

Ekphrasis Wed 31-May-17 16:29:50

What was your t4 result? It may not have been tested but would be helpful.

The only think I can add is that you could try adding one to 3 extra 25's a week to your dose. Unfortunately a gp would have to agree as you're on 100. The lowest tsh is around 0.3 so that's ok. An endo would agree. You can even get 12.5 thyroxine now, so you'd be on 112.5 a week. (Proving people need to alter dose slightly.)

Also, it really can take 3-6 months to totally feel better. Get as much sun and vit d as possible, raise your ferritin and b12. Pace, do gentle exercise that is strengthening. Look at bean theory. It's shit, I've been there several times in 20 years of it. I am a teacher too, now work part time while I'm a mum. I'm also hypermobile so keeping strong is important for me, can't do it if a little over or a little under. My tsh is roughly 0.6 and I feel good as long as I'm keeping fit. It's a balancing process though and took a long time to get here following a medication cock up after my son.

Diet doesn't seem to be too much of an issue here; I do eat healthily - I guess not too much carbs or only good ones. Low gi. Lots of nuts, berries and porridge! I don't have much milk as it seems to upset my tummy and reduce my iron absorbtion. (So take extra calcium). I increasingly think probiotics are really important too from personal experience from when I ate a lot of natural yoghurt.

Ekphrasis Wed 31-May-17 16:30:35

Some gps will do t3. It's not always helpful though as can vary a lot during the day. I've had it twice and it was 5 both times despite different tsh.

KinkyDoritowithsparkleson Thu 01-Jun-17 16:10:22

I have no t3 or t4 results - only TSH was tested. I am starting to feel a bit better, so I'm holding off on any other tests. Also, liver function is still off, so antibody testing for that and hoping it isn't yet another autoimmune condition. I'm feeling better on a much stricter diet and I've had plenty of sun. I keep getting asked to go back to work in September - there are so many jobs available. I really want to, but I must admit to feeling worried I can't manage it. Sigh.

Inbetweenus Thu 01-Jun-17 17:27:10

TSH and FT4 are the minimum needed to assess thyroid function. Iron and ferritin also massively effect wellness. With everything optimal (rather than just in range) there's no reason you shouldnt get well enough to work. But if not optimal, everything is a struggleconfused

Canadalife Fri 09-Jun-17 17:50:03

Hi there. I was diagnosed in January with was taken until now to start to feel right again. I was told at the start that it can take months for your symptoms to catch up with your biochemistry. ...for me it has taken 6 months at the 'right' stable dosage for me to start feeling more normal. Having had no energy for years I feel better than I have for ages. I take a raft of supplements inc vit d,c,b complex and cal + mag.

I have been working...but initially only 2 days a week..Monday and Wednesday at first spent Tuesday and Thursday in bed...but although tiring it was good to have work.

I would suggest waiting until you feel better to commit to work..or finding v part time work. I think you said you teach...if there are lots of jobs you can go gently

Hang in there and I really hope it improves

reddevil2222 Fri 09-Jun-17 19:55:15

I feel the same kinky, i have graves disease so opposite to you. I was diagnosed 18 months ago and have been working but I have had to reduce my hours from 37.5 to 24 as I just couldn't cope.
The sudden fatigue, aches and pains, nausea, brain fog were hard to deal with at work but its the anxiety that the graves disease caused that made me reduce my hours in the end, working with anxiety was just hell sad

KinkyDoritowithsparkleson Tue 13-Jun-17 08:49:48

It's soul destroying. I'm really hoping to be able to return in some way because I feel quite purposeless atm sad.

unavita Wed 14-Jun-17 17:14:28

Not able to work much at the moment due to Graves, I'm just completely trashed. What can you do? It is what it is, don't feel bad. I'm using it as an opportunity to spend the energy I have on resting and exercising within my physical means.

Really feel you on the anxiety reddevil, more than once found myself driving with slippery steering wheel recently and I'm so not a nervous driver usually. It's the way it combines with a foggy head to make me feel so vulnerable, like I won't react in time to some hazard.

anotherdayanothersquabble Wed 14-Jun-17 17:45:18

Iron supplementation and your B complex could also be an issue..

Look into MTHFR gene mutations and the inability to metabolise B vitamins. I have done some gene testing on 23andme and I have some mutations but efforts to use other B vitamins have not gone well, instead I use green vegetable sources of folate and eggs for B12.

Also worth looking at whether Iron supplements do more harm than good....

I have no idea if the iron theories are correct and I use spatone as I cannot tolerate any other iron supplements but feel it is something I should look into.

Sugar makes a real difference to me... without sugar, I have more energy.

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