Breathlessness and Hashimotos

[Thenel]

Had Hashimoto’s for 18 years up and down with TSH now 3.1 and suffering with breathlessness, severe fatigue, weight gain and headaches! Unfortunately my doctors practice do not test t4 & t3 to get full idea of what’s going on? Anybody ideas

[Foxtrot89]

Sorry to hear you’re suffering

I’m unsure of other causes but iron / B12 / folate deficiencies are all good to investigate when you have shortness of breath. If your doc won’t test these you can get a full panel of tests (to include thyroid function) via a private blood test. I use, and highly recommend, Thriva.

[Thenel in reply to Foxtrot89]

Thanks for replying I will try that? My doctor is good but can only go so far? Unfortunately Hashimoto’s and pernicious anemia are in the family so there is a possibility

[Foxtrot89 in reply to Thenel]

Ahh ok! Well in that case B12 should be high on your agenda to test. Low B12 can feel absolutely awful!

Also bear in mind that it can show as high in a test but still be the case that your body can’t use it (I’ve got this myself at the moment). I tried cutting down when I had a very high reading on my test and within a few days was absolutely exhausted again.

I believe both B12 and folate can be safely supplemented without a test (as long as you start B12 first *then* folate) alongside a good quality B Complex.

Iron should never be supplemented unless you know it’s low.

I hope that you can get some answers.

[Thenel in reply to Foxtrot89]

Thanks I thought that too? Have sent for blood test kit so hopefully will get some answers? How long have you suffered with it for?

[Foxtrot89 in reply to Thenel]

I suspected my B12 was low a couple of years ago and started supplementing which helped. I gradually felt worse for other reasons though. When I eventually was tested I had low iron and later had a test which showed low folate, both were an awful feeling! Any heavy exercise would put me in bed for 2-3 days.

I’m still tired a lot but at least starting to feel better sometimes.

I hope the blood test helps you!

If you need B12 or folate make sure you get the active forms (methylcobalamin and methylfolate NOT cyanocobalamin or folic acid) from a good quality brand.

[Rmichelle in reply to Thenel]

Hi I get breathless with hashis when my thyroid swells up and down, I also have iron def anaemia and have felt dreadful with trembles, breathless and heart palps I also get breathless when my frees are out of whack, I have a lot going on at the moment good luck but definitely get them irons tested, iron def is very serious.

[Thenel in reply to Rmichelle]

Thanks for reply I will be having private blood test so will be interested to see results? I think what everyone is saying points to what I’ve been thinking 🤔

[Hidden in reply to Foxtrot89]

"Also bear in mind that it can show as high in a test but still be the case that your body can’t use it"

Didn't know that, Foxtrot! When I had a B12 test the result came back OK with a note that I had enough stored B12 for 2 years and didn't need to be tested again till then! It was 481ng/L (180-900), and realise now that, being only just over mid range it could do with being higher.

[SlowDragon Administrator]

When on Levothyroxine the dose should be high enough to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range

TSH is too high, you need FT4 and FT3 tested

Just testing TSH is completely inadequate

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Ask GP for 25mcg dose increase in Levothyroxine

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Come back with new post with results and ranges once you have them

[Thenel in reply to SlowDragon]

Thanks for all that information, it’s quite interesting how many doctors lack basic knowledge on Thyroid problems? I’m disgusted at how many people suffer with the same symptoms that could be eased with the proper care?

[Moonchild10]

Hi, that's unfortunate! Testing reverse t3 is also important. My reverse t3 went way up when I was on t4 containing medication, currently on t3 only and doing so much better. I also changed my diet, I have lots of food allergies. I follow carnivore diet and feel like I'm healing.. no more hashimotos symptoms. The fatigue is gone, no more depression, no skin issues (rash), no back pain/soreness, bloating is gone, weight loss, although, I was never heavy. I would give it a try.. or begin with keto.

I hope you feel better soon! Diet is the first step, medication will not cure hashimotos. Flare ups still happen while on medication if diet isn't on point.

Wishing you lots of healing.

[Moonchild10]

Not often do you see people mentioning diet. This is crucial step in healing & decreasing inflammation. Vitamin/mineral deficiencies. Comprehensive stool testing, blood work for allergies, sex hormones/cortisol serum levels, Ana screening, TPO antibodies + another one, forget the name, SHBG, there is so much more. I would do a lot of research and find a functional medicine doc.

[Thenel in reply to Moonchild10]

Thanks for reply will look into getting vitamin and mineral deficiencies testing when get blood results back?

[LindaB620]

I stated having the same symptoms 3 months ago. GP said anxiety - but I had no reason to be anxious. I had thyroidectomy last November and have anyways had low iron. I started supplemeting with iron max which also has b6, b12 .and folate. I started noticing an improvement in 5 days ..but it took two weeks to resolve the breathlessness.

[TacoTico]

I have had all of those problems for many years, even with "normal" thyroid levels. Very recently it worsened to the point I was almost nonfunctional. Finally had a visit with an endo and found that my vitamin D is severely low (16, range 30-100), my iron is below the lower limit of normal, ferritin low, b12 "normal" but at the low end of the range. So - get those tested. Been suffering like this over 10 years and my iron had never been tested. I've always struggled with keeping vit D up but it has never been this low. Supplemented with a little vit D over the weekend and am already feeling better! Waiting on endo's full analysis before I run out and buy iron.

Best of luck to you. I hope you are able to get the help you need so you can feel better!

[Thenel in reply to TacoTico]

Thanks for the advice! I’m waiting on private blood test kit so hopefully will get some detailed answers?

[Hidden]

I would suggest you to try vitamin C and zinc combination as I also suffer from thyroid disorder and I had breathless all the time I went to my GP several times all what they tell me is ,it has connection with my thyroid and they can’t do nothing and I went to hospital the same nothing.I do my own research and have found this.After I bought vitamin C and zinc table I put 2 tablets in the water and it dissolve and I drank it.2 hours,my breathless gone and from there up to now I am drinking it but I now reduce the dose to one tablet .Now two months ,no tireness,and no short of breath .Try and see.

[Thenel in reply to Hidden]

Thanks for that what kind of vit c and zinc tablets did you use?

[Hidden in reply to Thenel]

Orange flavour effecent the one you dissolve in water I bought it from Tesco for £1.99

[klr31]

It might be air hunger due to your TSH still being too high and you needing more thyroxine.

Karen

[Thenel in reply to klr31]

Thanks for reply! I’ve had this ‘breathlessness’ on and off for 18 years but never to this degree? When first diagnosed my tsh was 7.8 and t4 7.4, my tsh is now 3.1 (no t4 as docs don’t do it😡) so I’ll wait and see what results I get from private blood test and go from there?

[Astlebridge]

I have the same problems ,had all the tests done but still a struggle ,my dad and grandad both had pernicious anemia,mild excercise just wipes me out ,terrible neck and head aches ,weight gain ,on inhalers now for breathlessness