Hashimoto struggling: Hi I was diagnosed with... - Thyroid UK

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Hashimoto struggling

Whitney2017
Whitney2017

Hi I was diagnosed with Hashimotos about a year ago now, i'm on 75 levothyroxine and made diet changes. I was hnder an endocrinologist and they tested my adrenals and cortisol all fine so i was discharged. I am still strugggling daily with Migraines, being tired all the time, if i'm not at work then i'm sleeping, hair loss, i went swimmingand afterwards I was sweaty and shaky didn't think I was going to be able to get dressed.

My GP is getting pretty tired of me having my tsh levels checked and are not interested in my tpo and tgab levels. I have had them done through medichecks but again,my GP isn't interested in looking at the results.

I am tired and don't really know what to do. I am trying my best to stay in work but it is a massive struggle.

13 Replies
oldestnewest

Post your results with the ranges forantibodies , TSH,FT4,FT3,B12,D3 ,folate and ferritin for folk to comment.

Whitney2017
Whitney2017 in reply to Treepie

I will have to get these done through medichecks - the gp won't perform t3 or t4 x

I've been there and it is a struggle so I feel for you.

I'm a lot better than I was but I'm still losing hair, still get migraines but fewer. I'm still waiting to shed a good amount of weight too.

What I would say about exercise is not to over exert yourself, the swimming sounds like it's knocking you out. Gentle walking perhaps?

I've just started to take up proper walking again but am still conscious not to over do it. Only been on NDT 7 weeks but I've still got to give my body time to get better before embarking an good exercise regime.

Your Endo should have been increasing your Levo every 6-8 weeks by 25mcg. That should be the process until you are relieved of all symptoms.

And as for your GP, he can get as tired as he likes with bells on! You get what you are entitled to through your GP & those thyroid tests are :-TSH, VitD, B12, Ferritin & Folate.

In any case we lot are sick to the back teeth of uncaring GP's.

Have you had any tests done for vitamin & minerals? I know myself that such deficiencies alone cause havoc.

Continue private testing when you can for other tests you need and post them, then members can help out.

As Treepie says, post your latest results 🙂

Sorry to hear this Whitney.

What diet changes did you make?

I know how you feel with GP getting fed up & the look on their face when you walk in ;(again). It’s disheartening I know. But what else can you do?

Keep going - Paula is right.

I hope you can get back to good health but take it easy. Think you have to introduce exercise very gradually - hard to do when you think back to how you were when you were well.

Take care

SlowDragon
SlowDragonAdministrator

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first and to test vitamins

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

SlowDragon I am Hashi too. What should we do to correct for the low stomach acid?

SlowDragon
SlowDragonAdministrator in reply to thyroidquestions

First is to make sure on high enough dose of Levothyroxine

Obviously if adequately treated we should no longer be hypo and then stomach acid should improve

2nd that all vitamins are optimal

3rd that gluten or dairy not causing issues (extremely common with Hashimoto's)

4th how's FT3 level in relation to FT4 and TSH

Full testing privately likely essential to establish exactly where you are

Come back with new post once you have results and ranges on all these

Low stomach acid can often be an issue especially with Hashimoto's

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Great stuff Slow Dragon. Love your posts and replies. Thanks from all of us! I should have my Medichecks inc rT3 back in a week. I'll post results.

I too have bad migraines. Fatigue and being hungry are big triggers.

I was tested for the vitamins etc as above and it turned out my vitD was only 21. Probably due to the amount of time out of the sun with migraines. Anyway, once this got over 80 I felt miles better and my migraines are less frequent and not so severe. If it falls below 70 I get worse migraines again. Also, due to the leaky gut issue, normal tablets don’t work well. I need the liquid capsules from the GP. But they won’t prescribe once it’s “in range”. I’m now trying the spray from Better You. Was recommended by one of the lovely people on here.

So once you get your results you might see something that needs a bit of boosting and that might help you a lot.

Slow dragon (and friends) will help you understand the results.

Good luck, and I hope your migraines do reduce very soon. 🤗

Hidden
Hidden

Hi Whitney 2017

Several months ago I went to a neurologist for numb big toe and stinging burning skin pains and told him I have MIGRAINES too that showed up after my thyroidectomy he suggested Magnesium for my numb toe and said it's helpful for migraines too "huh" Ive been taking 2 caps 2 hours before bed and so far I have not woken up to a migraine and prior to magnesium it seemed like I woke up everyday to a migraine and I did questioned him about the safety of taking them everyday and he said it won't be a problem and I agree I have been fine...still have numb toe though..lol

Paula101
Paula101 in reply to Hidden

I love magnesium too. Does so much for us 🙂

Whitney, your post makes me so sad and it makes me crazy. I wish I could tell you everything will be OK but I know better. I suffered like you for over 20 years. I could cry thinking about you and all the people out there like us who are mistreated (undertreated) and fobbed off by a medical profession who doesn't have the time or inclination to care about those of us who don't fit into their standard of care. I am in the States and last January I chose to go to a functional medicine clinic at great personal expense. There my appointments last for one hour and an extremely knowledgeable nurse practitioner has been treating me with great success. She asked me if I would like to try Low Dose Naltrexone (LDN). I would try anything. It has been a miracle for me. I reduced my T3 from 17.5 mcg to 10 mcg and now to 0. I am presently only taking 75 mcg T4 on five days a week and I may need to decrease that at some point. I have not had an "attack" since last November. All of my symptoms (leg aches, brittle nails, dry skin, constipation, fatigue, depression, hair loss, foggy brain) are gone. To be fair, I have also been taking supplements of zinc, selenium, Vitamin A, B12, Vitamin D, and magnesium in addition to a multivitamin. But I am convinced the LDN has made the biggest difference. She is also treating me for exposure to mold using cholestyramine and Dr. Shoemaker's protocol. I still see my endo for my thyroid hormone. I told her I was taking LDN and she knew nothing about it. She tried to look it up on MedLine and only found Naltrexone in large doses which is used to treat opioid addiction. She has no knowledge of it being used in low doses for autoimmunity. I hope and pray you will find help for your condition and can look forward to a brighter future. I wish that for all of us. It's really not that difficult. When it comes to treating thyroid disease outside the box we are living in the dark ages.

I can only sympathize with you as to the GPS not interested in anything except TSH. After I complain to my GP of symptoms of aching muscles burning running eyes, he just said there must be something else wrong with me. I did get her to allow me another blood test which showed TSH .22, low, and refer me to an endo Clinic. I'm hoping I can get stabilized. I was diagnosed with Graves disease. It has been two years since I had a thyroidectomy and have not been stable yet. Now I am feeling better on my own taking selenium, A&D, B12 complex, just added melatonin and lutein for my eyes. It seems you have to take personal responsibility because not one medical person I've been to has suggested any vitamins at all or dietary changes. I hope you can start feeling better soon, the B12 really gives you an energy boost, I take a liquid.

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