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Lottie08 profile image
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Hi everyone, so I've seen my consultant and although I've told him i feel lousy hes told me my tsh is 0.60 (0.55-4.80). He's reluctant to up my dose as i don't need it and it would put me into a hyper, fidgety, palpitations and not sleeping!? Looking back at my bloods results from Aug, Sept, October,December,March my tsh has been 5.7 , 6.7, 4.0, 4.4 , 3.9 and 5.5 ? Looking back at the 6.7 in September thats when i was really poorly and collapsed the week after.

So I've to stay on 50mcg for another 3 months and he says stress when you have hashimotos thyroid can trigger me feeling like this? Is all this correct that hes told me?

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Lottie08
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19 Replies
greygoose profile image
greygoose

He cannot possibly know if you need it or not without testing your FT4 and FT3. He should not be dosing by the TSH. The TSH can be very low, but the FT3 can also be low at the same time. TSH is a very bad guide of thyroid status.

So, are those your symptoms at the moment? I'm afraid your post isn't very clear. Fidgety, palpitations, not sleeping. I don't know that fidgety is a thyroid symptom either way, but palpitations and not sleeping can just as easily be under-medicated symptoms, as over-medicated. And it's rather doubtful that taking 75 mcg levo would make you 'hyper'. Your TSH isn't even under-range! I don't think he knows much about thyroid, does he. If I were you, if you feel you need an increase in dose, I would go back and insist.

Lottie08 profile image
Lottie08 in reply togreygoose

He said I'd be fidgety if he put me on a higher dose. Sorry just looked at my results my t4 is 16. My symptoms are just feeling very tired and sluggish. He hasn't tested for my ft3 this time I've just noticed.

Angel_of_the_North profile image
Angel_of_the_North in reply toLottie08

So, since most UK ranges end at 22 or 24, your Ft4 is well withn range and probaly needs to be about 19. YOu need an incrase and your doctor can't KNOW that you'l be fidgetty (is that a medical term?). Anyway, I'd rather be fidgetty than constipated, tired and forgetful. Ask louise.roberts@thyroiduk.org.uk for a copy of the Pulse article that states that people need top of range FT4 or even suppresedd TSH and slightly over range FT4 to feel well.

Lottie08 profile image
Lottie08 in reply toAngel_of_the_North

So if he thinks that 0.6 is ok then how do i tell him that i need to try it? Ive already spoken to my dr at the surgery and he said I'm on the right dose too otherwise I'll go into hyper? Should i get another opinion?

Clutter profile image
Clutter

Lottie08,

Has he tested anything other than TSH? TSH is a pituitary hormone and doesn't tell you anything about thyroid hormone levels.

I don't agree that a dose increase will necessarily make you feel over medicated and if it did all you'd have to do is to reduce the dose. Hashimoto's can make you feel unwell but having lower TSH may reduce thyroid activity which in turn can suppress Hashi flare ups.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range but some patients need FT4 over range which will suppress TSH. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

SlowDragon profile image
SlowDragonAdministrator

So your consultant knows you have Hashimoto's, has he suggested that gluten intolerance may be an issue? I doubt it.....but a large % of us find it is

Also when hypo, especially with Hashimoto's we are quite likely to also have low vitamin D, folate, B12 and/or ferritin. Have these been tested? If so, add your results here. If not ask GP to test.

Hashimoto's can affect our gut function, causing low vitamins, and often food intolerances, most commonly gluten

You don't need any obvious gut issues, to still find gluten free diet gives significant improvement

Thyroid UK is the main site for this support group, lots of info on there

Private blood test info there, if GP is unhelpful

See The Thyroid Pharmacist website for masses of info about Hashimoto's

The Thyroid Secret is great docu-series too - on you tube

Lottie08 profile image
Lottie08 in reply toSlowDragon

Thanks for the advice going to try a gluten free diet, although i don't eat alot of bread and pasta? But i do cereals

SlowDragon profile image
SlowDragonAdministrator in reply toLottie08

It has to be 100%, as if you were coeliac. No cross contamination

Like you I ate hardly ate masses of gluten & had no gut symptoms

I spent a week or so before I took the plunge, looking at my diet changing gluten options for GF ones.

Within 24 hours of going strictly gluten free I was astonished at seeing a difference, which grew the longer I have been on it. There are many others who have had similar experience.

Lottie08 profile image
Lottie08 in reply toSlowDragon

Great thank you, I'll try different milk and gluten free cereals and snacks then, any recommendations?

SlowDragon profile image
SlowDragonAdministrator in reply toLottie08

You can make very nutritious Gluten free muesli. Oats are naturally gluten free, but we need to buy certified GF ones from the "Free from" section.

Can mix a large amount at once & store in jar

I add pumpkin seeds, golden linseed, chia seeds, walnuts, Brazil nuts, sunflower seeds, dried apricots, dates, figs. Served with fresh banana/nectarine/pear

Most GF bread is an acquired taste! Some is pretty good toasted. My personal favourite is M&S brown seeded. Warburtons sour dough is pretty good too

You need to get use to reading labels, avoiding all barley, wheat & rye.

Aim to eat fresh food, plenty of protein and don't avoid fats.

Do however avoid soya - not good with thyroid issues

Lottie08 profile image
Lottie08 in reply toSlowDragon

Thank you I've been and bought dairy free milk, gluten free honey flakes and dairy free yoghurt! Will ask a dietitian to guide me with a good diet 😊

Lottie08 profile image
Lottie08 in reply toSlowDragon

Ive started on a gluten free and dairy free diet to see if it helps, I'm willing to try anything.

Katepots profile image
Katepots

Lottie,

Im surprised on 50 mcgs that your TSH has come down to under 1from 5, have you actually seen your results? Ask the secretary for a printout. You really need TT4, FT4, FT3 results though as pure guesswork from TSH alone. You should go on how you feel.

I'd recommend going gluten and casein free (cows milk) it's a big change to start but once you get your head around it and all the alternatives you can pretty much eat as normal.

Gluten and Casein look like the thyroid to the body (molecular mimmickry) so when ingested and they get in to your bloodstream via leaky gut(intestinal permeability) the body sees an invader so sends T cells out to attack but then mistakenly also attacks the thyroid.

In a past post I've listed all the things that I find have helped me, may be worth a look.

Research leaky gut. Chris Kresser is good for this.

Izabella Wentz Hashimotos Protocol book is good she also has a website.

Dr Datis Khazzarian also has brilliant books also a website.

Dr Susan Blum md The Auto Immune Recovery Plan is good for diet info.

FYI B12 should be 600 plus under 500 will start to cause neurological changes.

Vit D around 60 no less

Your Dr will say ok at much lower levels as they don't want to supplement people as very costly!

Have you had Ferritin and Folate tested too? They should ideally be mid range.

Lottie08 profile image
Lottie08 in reply toKatepots

Yes i asked for the printout today whilst i was there and thats what it says? Why are you surprised by it?

Katepots profile image
Katepots in reply toLottie08

Just that 50mcgs is a starting dose of Levo and most people require a lot more that's all. Great if you don't!

Really need your other bloods done to know what's going on though and your true thyroid hormone levels.

If your Dr is unhelpful there is always private testing.

Bluehorizonmedicals.co.uk

Thyroid plus 11,12&15 are all good comprehensive tests.

Not cheap but if you can afford to get done they are very worth it.

Lottie08 profile image
Lottie08 in reply toKatepots

Actually Katepots when i went for my bloods done last Friday, i didn't take my thyroxine till after i had my bloods done, thats what i was advised to do? Is that what you do?

Katepots profile image
Katepots in reply toLottie08

Yes, should always leave a day clear.

Lottie08 profile image
Lottie08 in reply toLottie08

So Katepots because i have cereal and milk every day and I've now gone onto milk free and gluten free cereal do you think I'll notice a difference!? Or will it have to be my whole diet, even down to milk free choc etc? I don't have a lot of bread anyway? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply toLottie08

You will need to be 100% gluten free to know if it has any effect.

Same I guess for dairy....I've not gone dairy free....as gluten has been so good

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