I am currently “dysthyroid” as my gp puts it. Briefly - diagnosed with hypothyroid disease in 2016 (all antibodies negative). Since starting transdermal hrt in Jan my thyroid levels hv plummeted (result posted recently but roughly T4 7.2 (11-22) and T3 2 (3.2-6.8). These results are from when I was taking levo 125mcg daily and Liothyronine 10mcg 3 x a day and are from 3w ago. My gp has increased my levo by 25mcg so I’m now on levo 150mcg and Liothyronine 10mcg 3 x a day. I am completely physically exhausted but I’m concerned that I’m also breathless on minimal exertion. Eg climbing 1 flight of stairs at home I Hv to sit on the bed gasping to get my breath back. Or just now I walked into another room to get something (all on the flat) n am gasping again. My question is - can breathlessness be a feature of hypothyroidism? Has anyone else experience this? Apart from this n the knackeredness I Hv not noticed any other symptoms, Hv not gained weight and my spirits are good. Thanks for reading (if you do)!
breathless when hypothyroid?: I am currently... - Thyroid UK
breathless when hypothyroid?
All the time : )
Also - typically it’s related to iron anemia (which is of course caused/correlated to hypo). It happens because of reduced red blood cell count that then decreases oxygen transport.
Have you had a full iron panel lately?
Hi - thanks for replying. I actually Hv chronic recurrent iron deficiency anaemia which is related to my kidney disease (I have something called renal tubular acidosis which means I pee out potassium and sodium bicarbonate so am prone to acidic blood. This is treated by fortnightly infusions of both plus I take oral versions at home). So my haemaglobin and a full iron panel is done monthly and I have IV ferinject monthly too. My last ferritin (3w ago) was 150 (50-400) and iron stores were “good” whatever that means. When I do dip into anaemia it does cause breathlessness you’re right but currently im not sure that that’s the cause (haemaglobin 3w ago was 11.2 11-16). However, you could be right because I know we need our vitamins and minerals to be optimal and perhaps I should argue for the ferinject a bit more frequently to get my ferritin up. I don’t think my renal consultant believes me whenever I mention anything to do with the thyroid. He just dismisses me! I did drop to a ferritin of 13 in March!! Do you or does anyone know if breathlessness (on exertion) can just be a symptoms of hypothyroid disease?
What about having Erythropoietin shots to increase bone marrow production of red blood cells? Iron injections are probably a good thing but without EPO production by the kidneys, you become anemic.
You can give them to yourself if prescribed.
I’ve had erythropoietin twice but only when I’ve been in hospital with a haemaglobin around 6-7 (11-16). I was always under the impression that it was something very special, very expensive, and reserved for the really sick people. But I’ll be at the hospital on weds so I’ll ask about that. Thankyou - could be a very helpful suggestion.
Assuming you got Epoetin alfa, then this ink takes you to the prices. Expensive - yes. But there are many more expensive medicines.
Epoetin alfa
Medicinal forms
I used it for one of my cats who had kidney disease although one human size syringe had to be decanted into insulin syringes. I'm in Canada. Of course the dose was miniscule (140 units three times per week) and a box of 1000 unit syringes cost $160.
Most likely you could benefit from using EPO although the correct dose would need to be calculated for chronic use. It's really a life saver. I was treating my cat for two years at my insistence, not the vet's. He'd never heard of using it for felines until I did my research and he agreed to give it a try.
I have had problems with iron deficiency most of my life. In my case I cannot rely on haemoglobin to tell me whether I'm anaemic or iron deficient because my ferritin and serum iron can drop into my boots and my haemoglobin will still be in range (but only just). Since the doctors I've seen rely on haemoglobin to tell whether the patient is anaemic and thus "deserves" to be given an iron prescription I've always struggled to get treatment for low iron. And on the rare occasions when I have managed to convince a doctor I need iron they will only prescribe about 2 or 3 months worth.
What saved me in the end was finding out that I could buy the iron supplements that doctors prescribe without a prescription from pharmacies. I can also pay for my own iron panels if I want to. I'd prefer to rely on doctors but they simply aren't reliable in my experience.
Some people do better with heme/ferritin supplements to improve iron and ferritin levels. The ones prescribed by doctors are "iron salts".
bnf.nice.org.uk/treatment-s...
Heme/ferritin supplements are discussed in this link :
healthunlocked.com/thyroidu...
I am not impressed by your doctor making up words like "dysthyroid". It isn't clear what he means. The patient should be told the right words for their medical conditions.
Your thyroid hormone levels are so low I think you might, eventually, be in danger of going into myxedema crisis, also known as myxedema coma (which, despite the name, isn't actually a coma).
en.wikipedia.org/wiki/Myxed...
I also wonder if you would benefit from getting regular blood transfusions if you struggle with absorption of electrolytes, and are frequently or always anaemic. Having low levels of electrolytes is very serious because, amongst other things, they control the heartbeat.
en.wikipedia.org/wiki/Elect...
...
I'm not sure why it matters so much to you whether your breathlessness is caused by hypothyroidism or your iron/electrolyte problems. They are all extremely important to healthy functioning.
It would probably be a good idea to ask for a referral to a haematologist - but whether you'll be referred or get an appointment, I have no idea.
...
Please be aware that people can be anaemic for multiple reasons - low iron is just the most common and the most well known. Have you had your B12 and folate levels tested recently? Some useful links :
irondisorders.org/wp-conten...
cks.nice.org.uk/topics/anae...
cks.nice.org.uk/topics/anae...
...
Do you ever get your faeces and urine tested to see if you are losing blood via that route? If it hasn't been tested then you should ask to be tested.
Regarding the symptoms of hypothyroidism, you might find this link useful :
Hi Humanbean thanks for your very interesting reply. My dependence on iron replacement stems from recurrent oesophageal ulcers for which I had numerous tests to diagnose including a capsular endoscopy. Initially they wanted to put me on mega doses of omeprazole as well as rantidine but I always refused because I know we thyroid patients Hv low stomach acid as it is so I never took them. I was always h pylori negative. The actual causes of the ulcers was never found. They seem to come n go on their own. The faeces is therefore often positive for blood but colonoscopies Hv always been normal. For me it’s important to know whether the breathlessness is caused by my blood being acidic or whether it’s due to low iron because the treatment is different. The acidic blood is corrected by an infusion of alkaline sodium bicarbonate liquid and since I go to the renal unit every 2w, if the blood is acidic they will give me a larger infusion. If it’s not acidic and the haemaglobin is low they’ll give me a ferinject infusion. I am under a haematology nurse but not a consultant haematologist. I think that’s a good idea to ask to be referred to a haematologist and to check the other iron parameters too. I’ll do that.
I read up the bit about myxodema crisis and I’ve had all those symptoms together except for slow heart rate. I did however in 2021 whilst out for a walk on my own, collapse then came round lying on my front with my face smashed up and my arms by my side. I had no memory of the fall and clearly had not used my arms to try and save myself. Later a Ct scan and a 3 day ecg were normal but I was told I could Hv had an attack of long qt syndrome (which is a form of a slow heart rate). Thanks to you I think I’ll Hv another chat with my gp. Thankyou for all the advice and articles you sent, I really appreciate it.
Aren't esophageal ulcers caused by acid reflux? The cardiac sphincter doesn't close properly and stomach contents shoot up. With kidney disease, the stomach contents tend to be high acid because the kidneys are not maintaining the acid/base balance properly. As you rightly state in your original post, your kidneys are not managing electrolytes well.
If your potassium falls low, then yes, your heart doesn't beat properly and you can do a face plant when out walking.
Possibly your best bet is to be treated by an internal medicine specialist. They are the 'doctor's doctors'. Even one of my cats has an internal medicine specialist.
I had severe acid reflux so I had an operation called a fundoplucation in 2013 to stitch the stomach into place and to prevent reflux. When the body’s blood becomes acidic the lungs start hyperventilating to blow of lots of carbon dioxide and water. Carbon dioxide + water = Co2 + H2O = H2Co3 which is an acid (carbonic acid I think). So the body is clever because acidic blood causes you to hyperventilate and quickly blow of that extra acid so that the blood can become alkaline (normal) again! So I always know that when I become breathless it could be my kidney disease playing up but at the moment bloods Hv shown that this time the breathlessness is not caused by the kidneys. Thanks for your suggestions, I’m going to the hospital tmrw so I’ll see if there is anyone more specialised than the renal consult I already see. Actually my problem is I don’t like to make a fuss or be a burden so I don’t speak up for myself enough!
what are your most recent Ft4 and Ft3 results
Do you always get same brand levothyroxine and same brand T3
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Is this how you do your tests
Looking at previous post your endo started you on very high dose T3
When I saw the endo in March ‘22, he started Liothyronine at 10mcg three x a day or 30mcg a day! I had cottoned on to the fact that he didn’t seem to know what he was talking about but didn’t realise it was a massive dose to start on. I only learned that here! After a few days of feeling jittery I settled and Hv had improved symptoms. However I lost 7kg in weight between then and Christmas and I didn’t Hv weight to lose. I haven’t managed to put it back on yet.
We always recommend only starting on 5mcg and SLOWLY increasing
You may need a bit more levothyroxine and a bit less T3
It can take long time experimenting by tweaking doses and timings of T3
Hi SlowDragon - thanks for your reply. Yes the bloods were taken as you describe tho they were taken at 11am. The last dose of levo was at 11am the day before and I had nothing to eat and only water to drink from around 7pm the night before. I set the alarm to take the last 10mcg Liothyronine at 4am so actually only left 7hrs between that and the blood test. TSH was not tested this time. From memory the bloods from 3w ago were T4 7.2 (11-22), T3 2 (3.2-6.8).
I am aware that my starting dose of Liothyronine was high and In fact my hospital records I’ve just learned state I should be taking 10mcg 4 x a day! So thanks to you and other replies I’ll make an apt with my gp this week (it IS a possibilty in my surgery)! Many thanks.
ps SlowDragon the brand of both Levi and lio change every time. Currently the lipthyronine is Roma and the levo is Accord but I’ve also had Wockhardt! I Hv no idea which brand I prefer but I’ll ask the gp to state on the prescription one of the brands and I’ll ask the pharmacist (who I have a good rapport with) to stick to that. Once again many thanks.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
dropbox.com/s/bo2jzxucgp9hl...
helvella - World Desiccated Thyroid
Contains details of all known desiccated thyroid products.
dropbox.com/scl/fi/gx6dmz5i...
helvella - Thyroid Hormone Medicines - RotW
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
From memory the bloods from 3w ago were T4 7.2 (11-22), T3 2 (3.2-6.8).
Double check actual results
Suggests you perhaps have malabsorption issues
That’s a high dose …..but (assuming results are correct) Ft4 and Ft3 are low
Many members find Roma capsules don’t work as well as tablets
Tablets - brands 20mcg are cheaper
Cut in half to get 10mcg
Teva - lactose free
Mercury Pharma by Advanz
Morningside
Thanks I’ll post my actual results tmrw. You’re v clever - I do Hv malabsorption issues due to a perforated stomach and peritonitis leading to partial resection in 2017. That combined with hypothyroid disease means I don’t absorb well. I always seem to need higher doses of any medication eg antibiotics for infections. However the drs don’t seem to remember or they dismiss this whenever I bring it up. Also - thanks for your info about different brands. I really appreciate your help and expertise.
Depending on the site, a diseased digestive tract may well have consequences for B12 absorption. A resection, again depending on the site could mean little to no absorption of it
Do you keep a close eye on as many vitamin and mineral levels as possible but especially B12
How you describe your symptoms was exactly me last year as I have a 3 story house and couldn’t talk and almost passed out if I climbed to the top.
I found that I was folate deficient so supplemented that plus a BComplex as well as B12 injections. Also I had malabsorption issues and found changing to liquid Levothyroxin made a huge difference. You may want to ask your GP to arrange that for you. Again like you I had FT4 of 3 and FT3 of 3 but now after a year they have gradually come up on 100mcg T4 to around 12 and 40mcg T3 to top of range. Breathlessness is much improved!
Thankyou so much. I was found to be folate deficient 2 years ago and my gp has put me in folic acid 5mg daily for 3m periods on and off ever since. My last folate 3w ago was 20. I need to look all my last results up n post them on here which I plan to do today. I know that methyl folate is a better option so I’ll see about making that change. It’s interesting you mention liquid thyroxine because I was thinking about that but thought I bet it’s expensive & my gp will refuse it! It’s lovely to hear from someone who’s also got malabsorption issues. I don’t feel so alone. I am taking a B complex - one of the ones recommended by slowdragon tho I stopped it for a week before my last blood test. I’m back on it now. So I have a plan.
1. Repeat ferritin and iron studies (as per advice from Hellvella I think).
2. Source methyl folate instead of folic acid
3. Ask to switch to liquid thyroxine
4. Repeat thyroid bloods in 3w (that’ll make it 6w since my levo was increased from 125mcg to 150mcg. Then discuss with gp the next step. It was either SD or GG who suggested I may need to reduce liothyronine and increase levo. I’m currently on 150mcg levo and 30mcg liothyronine.
5. Repeat B12 level (last test 8w ago was around 500 - near the top of the range but I’ll post exact results & ranges later).
Thank you and others for your wonderful advice. It’s so lovely to be heard and to be given suggestions rather than being dismissed all the time like I am with the Drs. My renal consultant said my breathlessness was due to deconditioning!!
You didn’t receive the reply I sent this morning (above). Would like to ask, what were your B12 levels before B complex
Here first are my blood results with ranges from 10.05.24 following SD’s rules:
Folate 20 (3-20)
Albumin 22 (32-50)
T4 7.9 (11-22)
T3 2.9 (3.2–6.8)
No TSH
Vit d3 100 (20-125)
B12 560 (190-950)
Ferritin 150 (25-300)
I’ve been taking Vitablossam liposomal B complex since Dec 23 but stopped for a week before the bloods that were done on 10th May. Restarted after the blood test.
9th September 2023
Vitamin B 12 (before starting any B complex) 530 (190-950). So taking the B complex hasn’t made much difference to my vit B 12 levels, because my vit B 12 after 4m of complex use was only 560! Perhaps I should ask to be tested for PA although I know you can get a lot of false negatives with the test?!
I am prescribed Vitamin d3, ferinject for ferritin and folic acid (may change to folate) at the hospital so really im only responsible for looking after the B12 at the moment. I can’t increase my d3 further because my calcium then goes too high. A good haemaglobin for me is 11 point something and I often drop to about 7. I never go into the 12s (11-16 is the range). Maybe I could request more ferritin each time or y to Hv to more often?’
With your B12 being almost 50% through the range before taking B12, I’d suggest it was reasonable. Do you have earlier lab reports to look at whether it had ever been higher than 560 because a declining level would be more indicative
As an aside, like you just recently I found Pink Tribe and Yipmai liposomal B12 complex didn’t help much with B12 and was even worse with folate. I won’t be buying it again
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