I have hashimotos and am on 50 micrograms of levothyroxine. My breathlessness is getting really bad and it only seems to have started and got worse as my thyroid problems got worse. Does anyone suffer from the same symptoms and can anyone offer any advice of what I can do to make it better or even to know what is causing it.
Severe Breathlessness with Hashimotos - Thyroid UK
Severe Breathlessness with Hashimotos
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lesleyoc
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One effect of being hypothyroid is that people end up with low stomach acid. This results in food being digested poorly and then patients end up with a lot of nutrient deficiencies.
Being low in iron and/or ferritin (iron stores) and/or vitamin B12 and/or folate can result in people being anaemic. Anaemia causes breathlessness.
If you've got any test results to share with us you could post them as a picture or copy them into a post with the reference ranges and ask for feedback.
Thank you for replying. These are the tests I have had so far.Blood Tests
Serum free T4 level – (should be 7.0 – 20.00)
Date of TestResultNormal?CommentsMy Notes
14 August 20189.8Normal
19 June 2020 XaWEr10.4NormalIncreased slightly since last time
TSH Level – (should be 0.3 - 5)
Date of TestResultNormal?Comments
14 August 20186.10Above high ref limitMildly raised TSH. Subclinical hypothyroid.
19 June 2020 XaELV5.02Above high ref limitDoc’s note: Confirms previous TFT, autoimmune subclinical hypothyroid. Suggest inadequate T4Dr Shar has confirmed that I have hypothyroid disease, but not severe. Have started taking 25mg daily Levothyroxine sodium tablets (30 June 2020)
7 August 20202.87Within normal range
27 October 20200.92Should be 0.3-5.0
Thyroid peroxidase antibody level – (should be 0.00 - 9)
Date of TestResultNormal?Comments
14 August 2018483Above rangePositive TPO titre confirms an autoimmune thyroid disease
Not tested June 2020-
B12/folate levels
Date of TestResultNormal?Comments
19 June 2020-B12451ng/L(180-900)A normal level of vitamin B12 in your bloodstream is generally between 190-950 picograms per milliliter (pg/mL). Between 200 to 300 pg/mL is considered borderline and your doctor may do more testing. Below 200 pg/mL is low and more testing is neededMy B12 is normal. May start taking multi B vitamins
19 June 2020-folate11.6ug/L(4.0-20.0)
Ferritin level (iron) (15 – 200)
Date of TestResultNormal?Comments
19 June 202039ug/LBorderlineIDA possibleWill take supplements for a while
Reference Ranges: FERRITIN guide to interpretation: Low: Less than 15 ug/L. Borderline: 16 – 40 ug/L. Normal: 41 – 400 ug/L.
Full Blood Count – Neutrophil (2.0 – 7.0)
Date of TestResultNormal?Comments
19 June 20201.4Below low reference limitEating foods rich in B-12 may help improve low neutrophil blood levels. Examples of foods rich in vitamin B-12 include: eggs. milk and other dairy products.
Below low reference limit
27 October 20201.5Below low reference limit
The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3). Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection.
Serum Lipid Levels (Cholesterol)
Date of TestDate of testResultNormal?Comments
Cholesterol level - XE2eD14 August 20186.27Less than 5.0Above high reference limit
Cholesterol level – XE2eD7 August 20207.93Less than 5.0Above high reference limit
Cholesterol level-XE2eD27 October 20207.01Less than 5.0Above high reference limit
Calculated LDL cholest – Xalp414 August 20184.11Less than 3.0Above high reference limit
“ “ “7 August 20205.51Less than 3.0Above high reference limit
Triglyceride level – XE2q914 August 20181.480.6 – 1.7
“ “7 August 20201.670.6 – 1.7Just below high reference limit
HDL cholesterol – 44P514 August 20181.48Less than 1.3
“ “7 August 20201.66Less than 1.3Above high reference limit
Total chol: HDL ratio – 44PF14 August 20184.24Less than 3Above high reference limit
“ “7 August 20204.78Less than 3Above high reference limit
Non high density lipoprotein cholest – XaN3z14 August 20184.8Less than 4Above high reference limit
“ “7 August 20206.3Less than 4Above high reference limit
Plasma fasting glucose level – 44g114 August 20185.9(3.5 – 5.6)Above high reference limit
Foods to help lower cholesterol: oats/barley & other whole grains/beans/aubergine & okra/nuts/liquid vegetableoils, apples, grapes, strawberries, citrus fruits/foods fortified with sterols & stanols or 2g daily supplements/soy/fatty fish/fibre supplements
June 2020 – Serum pro-;brain natriuretric peptide level (should be less than 400.0) mine was 67. Commented heart failure is highly unlikely.
19 June 2020 – liver tests showed up OK
Cholerestol levels too high – need to reduce
A couple of weeks ago I had a chest x-ray. Doctor said that he found nothing significant apart from a scar on the lung, which neither knew how to interpret.
Any advice would be appreciated.
Thanks
Lesley
SeasideSusieRemembering
Lesleyoc
Do you have any current test results to share? If you can post them, along with their reference ranges, there may be some clues there.
Low Ferritin/iron can case breathlessness.
Also lung and heart problems can cause breathlessness, have these been checked?
HelloThank you for your response. These are a list of results I have had so far.
Blood Tests
Serum free T4 level – (should be 7.0 – 20.00)
Date of TestResultNormal?CommentsMy Notes
14 August 20189.8Normal
19 June 2020 XaWEr10.4NormalIncreased slightly since last time
TSH Level – (should be 0.3 - 5)
Date of TestResultNormal?Comments
14 August 20186.10Above high ref limitMildly raised TSH. Subclinical hypothyroid.
19 June 2020 XaELV5.02Above high ref limitDoc’s note: Confirms previous TFT, autoimmune subclinical hypothyroid. Suggest inadequate T4Dr Shar has confirmed that I have hypothyroid disease, but not severe. Have started taking 25mg daily Levothyroxine sodium tablets (30 June 2020)
7 August 20202.87Within normal range
27 October 20200.92Should be 0.3-5.0
Thyroid peroxidase antibody level – (should be 0.00 - 9)
Date of TestResultNormal?Comments
14 August 2018483Above rangePositive TPO titre confirms an autoimmune thyroid disease
Not tested June 2020-
B12/folate levels
Date of TestResultNormal?Comments
19 June 2020-B12451ng/L(180-900)A normal level of vitamin B12 in your bloodstream is generally between 190-950 picograms per milliliter (pg/mL). Between 200 to 300 pg/mL is considered borderline and your doctor may do more testing. Below 200 pg/mL is low and more testing is neededMy B12 is normal. May start taking multi B vitamins
19 June 2020-folate11.6ug/L(4.0-20.0)
Ferritin level (iron) (15 – 200)
Date of TestResultNormal?Comments
19 June 202039ug/LBorderlineIDA possibleWill take supplements for a while
Reference Ranges: FERRITIN guide to interpretation: Low: Less than 15 ug/L. Borderline: 16 – 40 ug/L. Normal: 41 – 400 ug/L.
Full Blood Count – Neutrophil (2.0 – 7.0)
Date of TestResultNormal?Comments
19 June 20201.4Below low reference limitEating foods rich in B-12 may help improve low neutrophil blood levels. Examples of foods rich in vitamin B-12 include: eggs. milk and other dairy products.
Below low reference limit
27 October 20201.5Below low reference limit
The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3). Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection.
Serum Lipid Levels (Cholesterol)
Date of TestDate of testResultNormal?Comments
Cholesterol level - XE2eD14 August 20186.27Less than 5.0Above high reference limit
Cholesterol level – XE2eD7 August 20207.93Less than 5.0Above high reference limit
Cholesterol level-XE2eD27 October 20207.01Less than 5.0Above high reference limit
Calculated LDL cholest – Xalp414 August 20184.11Less than 3.0Above high reference limit
“ “ “7 August 20205.51Less than 3.0Above high reference limit
Triglyceride level – XE2q914 August 20181.480.6 – 1.7
“ “7 August 20201.670.6 – 1.7Just below high reference limit
HDL cholesterol – 44P514 August 20181.48Less than 1.3
“ “7 August 20201.66Less than 1.3Above high reference limit
Total chol: HDL ratio – 44PF14 August 20184.24Less than 3Above high reference limit
“ “7 August 20204.78Less than 3Above high reference limit
Non high density lipoprotein cholest – XaN3z14 August 20184.8Less than 4Above high reference limit
“ “7 August 20206.3Less than 4Above high reference limit
Plasma fasting glucose level – 44g114 August 20185.9(3.5 – 5.6)Above high reference limit
Foods to help lower cholesterol: oats/barley & other whole grains/beans/aubergine & okra/nuts/liquid vegetableoils, apples, grapes, strawberries, citrus fruits/foods fortified with sterols & stanols or 2g daily supplements/soy/fatty fish/fibre supplements
June 2020 – Serum pro-;brain natriuretric peptide level (should be less than 400.0) mine was 67. Commented heart failure is highly unlikely.
19 June 2020 – liver tests showed up OK
Cholerestol levels too high – need to reduce
I had a chest x-ray 2 weeks ago, but apart from small scar tissue on lung, doctor could find nothing helpful. I had started taking iron supplements, but after something I read on the site am wondering if I should unless the doctor advises.
Thank you for any advice.
Lesley
SlowDragonAdministrator
How long have you been taking 50mcg levothyroxine
Do you always get same brand of levothyroxine
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Ask GP to test folate, ferritin, B12 and vitamin D
These are frequently very low if under medicated on too low a dose of levothyroxine
Low iron or ferritin can cause breathlessness
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Have you had thyroid antibodies tested yet, if not they should be tested
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
Thank you for the helpful advice. I do take my thyroid tablets first thing on an empty stomach and not at the same time as others meds. Am awaiting results of a private test ordered online, but not sure all that will be tested. I shall keep your reply because it has a lot of useful information.Thanks.
Lesley
Ask your GP to test iron and ferritin
How long have you been left on just 50mcg levothyroxine
What other medications are you currently taking?
I have been on 50mg levothyroxine for a few months. The test done on 27th October showed TSH level @ .92 which doctor said was normal, so he did not change the dosage. I had my Serium free T4 level tested 19th June 2020 and the result was 10.4. I had a thyroid peroxidase antibody level test in August 2018 and the result was 483. I take no other meds from doctor but am taking cod liver oil (to keep my arthritis at bay), also Vit D, B vits, selenium (just started), zinc (also just started) and iron tablets but think I ought to wait until this gets tested before taking them.I do wonder if it's the right thing to do to keep taking vitamin supplements.
Thank you for your help and advise.
Lesley
27th October showed TSH level @ .92
Just testing TSH is completely inadequate
Serium free T4 level tested 19th June 2020 and the result was 10.4.
Need ranges (figures in brackets after each result) ...but looks extremely low - should be in top third of range
thyroid peroxidase antibody level test in August 2018 and the result was 483.
This confirms autoimmune thyroid disease also called Hashimoto’s
but am taking cod liver oil (to keep my arthritis at bay), also Vit D, B vits, selenium (just started), zinc (also just started) and iron tablets but think I ought to wait until this gets tested before taking them.
Should NOT take iron unless had full iron panel test for anaemia.
If taking vitamin B complex you need to stop this a week before ALL BLOOD TESTS as contains biotin and this can falsely affect test results
I have noted your comments regarding my free T4 level and have requested a copy of the article by a doctor where he gave his dosage recommendations. This I shall discuss with the doctor when I see him.
Will also stop taking the iron until I get to know my current levels.
Hello againI was on 25 mg for a month or so and have now been on 50 mg for a few months. It's always the same brand as prescribed by the doctor.
Thanks.
Lesley
So you are likely ready for next 25mcg dose increase in levothyroxine
SlowDragonAdministrator
Hashimoto's frequently 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. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes 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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
healthcheckshop.co.uk/store...?
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Hello againI am taking the TEVO brand.
With regards to the gluten free, my daughter is already gluten free and other family members are intolerant to gluten. I have never suffered, but I did go gluten free for a month, but noticed no benefits. However, I will be doing it again in the new year, but for a longer period. It didn't seem so crucial at that time to persevere, but now I am so concerned about my breathlessness and can't seem to pinpoint the cause.
Thanks
Were you always on Teva ...
Suggest you try different brand. Accord or Mercury Pharma are well tolerated
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
List of different brands available in U.K.
dropbox.com/s/6h3h0qi4eqwi6...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Will discuss possibility of differing brands when I see the doctor.Thanks
I have discovered that I get really breathless when my infection levels are high.
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