Thyroid UK
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dr finally called

i had given up on her calling until the phone rang at 6.45 tonight

she said ecg was fine and nothing to worry about

i did mention my breathing is still bad and my oxygen levels sometime drop to 89 but she didnt seem to concerned

told me to talk to endo when i see him

im really thinking im anemic the fast heart rate shortness breath heavy periods (last one lasted 4 weeks and was heavy for 10 days)

im allso starting to get days where im hurting from head to foot so my levels are prob screwed now too

25 Replies

Good news..i know how anxious we can get when waiting for test results....not supprisingly when we dont feel well.


i dont thing drs realise half the time


Hi Mandy,

Good news,but you definitely did the right thing.

You could well be right about anaemia,even if not before, now after heavy periods, well known. GP`s do not usually realise that Ferritin/iron has to be clearly in range, not at the very bottom, also B12 + foliates, high in range, well over half the range. I would ask for retests, even if had them quite recently and study the results yourself!

Best wishes,



ive not had any tests for iron ect


Hi Mandy, I am not surprised! First thing my Endo tests for. Those , Diabetes and vit D , corrected calcium if low, are the first thing that should be tested after thyroid itself.



well if my dr wont test im thinking of buying a home test for anemia costs about £12

at least if it comes that i am anemic then dr will have to test

but theres no way i can afford to get the full bloods done


Hi You should have no trouble at all getting the tests from GP, it is only the FT3 that is a problem,that is the NHS Lab managers! Also the B12+ foliates , done together, separate results, ranges etc, For both of these if a problem say because of the breathlessness and thyroid, both very important, and low Oxygen too.Also the diabetes as hormonal and autoimmune too. , and lots of emphasis on that now a days. Th vit D, and corrected calcium if result low, is what NICE say, not a vit but a hormone.Except for Endo and failing that GP, no other consultant is allowed to treat that, as so complicated, only they can test for it, even a rheumy, very relevant to their specialities.

Also if you pay yourself, I definitely would not then only go to the Lab that a doc will recognise, Blue Horizon, as used in private hospitals or the one my hospital recommends something like Labs direct, they are expensive. Blue Horizon need to quote TUK 10 for a discount.

However, I repeat these are standard tests, a GP will not refuse them.

Must dash urgent appointment with my Endo.



Definitely ask for (insist on) iron tests, it's usually Hb, TIBC, but Ferritin is the stored sort, ask for folate and B12 too. Have you had a Vitamin D test? My GP wouldn't do one so I bought a home kit for £25, (instead of a hair cut!) well worth it as I was low and feel much better now - and your symptoms below are ringing a few bells. Sometimes we cannot rely on docs for chronic conditions.

Irons etc are essential for the thyroxine to work properly (but don't take them together). Vitamin C helps iron absorption too. J :D


As you are worried about your condition and no-one is listening, this is an extract:-

At minimum, if your doctor isn’t aware that too little thyroid hormone regulation can cause breathing problems, share this special report with him or her. The doctor may use the information not only to relieve your breathing problem, but to help other patients, too.

Print a copy of the link below and send to your GP. Your instinct may well be right and it is due to your hypothyroidism. The links within may not work as it is an archived site (Dr Lowe died last year).


thankyou shaws i will print that and take it with me

but i do thing Dr H the one whos treating the depression first then thyroid maybe be more clued up than the rest as he say too little or too much levo can cause the palps so hopefully when i mention breathing and suspect anemic he will have a clue as to what im talking about

i have been taking ferrous sulphate 200mg 3 times a day for maybe 2 weeks now but no improvement

will allso ask for chest x ray to rule out cancer (mum. aunt and great uncle all had lung cancer) did have chest xray a few months back and was clear but will need for peace of mind


after having a quick browse of that article ive decided to go back on thyroxine

i had some mercury pharma ordered in by my chemist (was told they made eltroxin that dr tried getting for me)so today ive taken 75mcg

was on 50 before being stopped (as levels were in range)and had breathing probs but not to the point it was getting low on oximeter. Maybe my heart will continue to race but i know i dont have a heart problem so as long as it dont get worse ill continue

i will tell dr when i get to see him


Hi Shaws sorry to be a royal pain

why would i feel worse taking the thyroxine than i did before?

i stopped taking it under drs orders 11 november and the last few days ive felt real hypo legs kind of wobbly its like i have to get my balance before i walk and it has felt like ive been carrying lead weights on my shoulders as my entire body feels heavy

ive been cold to the point of wearing 2 jumpers cardigan and a scarf inside while others were happy in a t-shirt

today i feel real drained no energy at all and exhausted along with above symptons


Dear Mandy

I am sorry you are feeling so bad and I don't know why the doctor told you to stop taking meds. I would phone your surgery on Monday and ask for an appointment or ask the doctor to return your call (mine does) as you are feeling so unwell. Tell them you may have to visit the A&E. I've no idea why he told you to stop but it does takes quite a few weeks for a dose you take today to leave your system.

I felt worse on levothyroxine than I did before I was diagnosed. Some people do - it could be fillers/binders etc.

You do sound very hypo with all the symptoms you mention. You are obviously more worried because of your family's history.

Get a copy of your thyroid gland blood tests and post the results on a new question. It may well be that, although the GP said you were 'in range' 50mcg is a very small dose and you might have still been undermedicated. Being in range doesn't mean you are on enough thyroxine.


i was taken off thyroxine because my heart was racing.

i told the dr the only reason i asked for thyroid blood to be done was unable to lose weight and had no other symptons other than weight gain so she told me to stop taking until i see endo.

I did see another dr last week who have put me on trazodone for bad depression to which he pin pointed back to 2011 when we lost mum (he was her dr he used to drop her prescriptions off to her him self and remembers me asking for help before and after we lost her) hes allso given me diazepan for when really needed

he did say the trouble with thyroid is getting the dose just right as if it too low or too high it will cause a racing heart but he felt the depression needed addressing first as i was very upset in his office and it took a fair while to get me in a state where i was able to talk again

im hoping to see him again as he does know whats going on with me and seems to know about thyroid so hopefully even if he just agrees to me staying on the meds until i see endo on 9th december and will hopefully get a diffrant med to try

im now wondering if i should continue taking the levo or stopping

i really dont want to get more hyper than i am

ive upped my dose by 25mcg as i was on 50 when i was stopped

i hate this thyroid i really do such a confusing disease :(


I hope the doctor is able to help you. Palpitations are awful as I had them on levo too. I also found it impossible to walk without painful muscles, etc. I am now fine, so eventually with the right medication and a good doctor you can get well. Hopefully the appointment with the Endo will help you get better.


the 24 hour ecg came back good so i guess ill get used to the palps i do take propranolol if they do bother me but thats mainly if i need to go shopping

its just i want to feel normal again and be able to walk and do things i used to do


While it may be agood idea to stick with the GP you're comfortable with, its important to get him to understand that its your unexplained physical symptoms which are depressing you and not the other way around.

You are undoubtedly anxious, and have every reason to be so, and antidepressants may help you cope while the GP and endo investigate your physical symptoms. Try, if you can, to introduce additional vitamin/supplements one at a time over a 2/4 week period, noting any improvements/adverse impacts you feel, if any, before introducing new ones, unless you are tested and prescribed.

I was very low vitD and despite a massive loading dose don't feel any difference. But I wasn't aware of feeling ill due to the deficiency either. Stopping Levo and T3 for 4 weeks has made me feel well(er) although I'm super tired as I'm surgically hypothyroid, and will resume T3 on Monday.

Its all very long drawn out and hard going and I hoe you get the help you need soon, Mandy x

1 like

hi clutter i have been depressed since we lost mum but have just plodded along kind of in denial (not a good thing) but seeing the dr brought it all out so i do feel i need the treatment whilst i understand i do allso need thyroid sorting too

i do take a few various vitamins including folic acid and b12 and co enzyme q10

im allso taking kalms a lot throughout the day so as not to rely on diazepan



Just to say the ferrous sulphate can take a couple of months before you feel different and any change will be gradual. My ferratin level was 5 so I also went on 200mg ferrous sulphate 3 times daily, was VERY short of breath with severe chest pains. It has taken about 4 months to relieve symptoms and still get chest pains some days.

Was also discovered to have the adult form of rickets (osteomalacia?) a couple of weeks ago and gp advised that can cause bone pain and it could be sternum pain so it isn't necessarily heart problems or long cancer if those are what you are worrying about.



i am deffinatly worried about the lung cancer so really need to rule that out

ive allso had an annoying cough thats been lingering for a few months

its not a constant cough its kind of like once i start it goes to full scale choking. It dont affect me in bed during the night or anything it just suddenly appeaers from nowhere and is a very dry cough

ive allso just started black strap molasses again in a banana smoothie

on a good note the iron are helping me stay unconstipated so there is some good at the moment


Scatterbrain may I ask if they prescribed VitD for the osteomalacia?

(I had rib cage pain, felt like it was solid & couldn't seem to take a proper breath, chest xray etc, meanwhile found out I was low Vit D, other joint pain eased after supplementing too). J


Hi, yes it was, I had a severe breathing and chest pain attack an hour after a lesson at the Riding for the disabled but I had been complaining about shortness of breath and chest pain for some considerable time. Luckily I was passing the gps surgery when it came on and although it was outside surgery hours he saw me straight away.

For as long as I remember, though, I have had pain in my bones especially in my shins as though my bones are trying to break through the skin but because I also have joint hypermobility syndrome it was always put down to that.

I would say that the vit d is def. helping, it is called adcal d-3 (calcium and vit d). As you say, it feels as if you can't get a good, deep breath and also as if your chest is about to explode.

Hope that helps.


Thank you, it took me a few months to feel better (on D3 drops 3000iu daily at present, none in the summer sunshine!) Yes I had shin pain too (still have every now & then) in fact the shin pain stopped me ski-ing - boots too painful & heavy! - never mind the cold!

May I ask (again) if you think there is a Thyroid/hypermobility connection? I have noticed this several times, (and my DIL is double jointed, always cold, easily bruised, has period problems etc.). J :D


I think there is in the sense that I believe joint hypermobility is also autoimmune even though it is congenital. It could be of course that when you have hypermobility you arein constant pain so your body interprets it as being under constant attack so your immune system goes into overdrive and makes you more likely to get other auto- immune conditions. I think it is significant that I have also had severe IBS for many years and also two "weak positive" results for lupus, and both of these are also auto-immune. I'm no expert on these things though and many of these symptoms are common to a host of other conditions too. Has your DIL been tested for thyroid?

My GP has never said there is a link between the two, he just thinks I have been very unlucky to get so many things but who knows?


Hi thanks for this - Sorry mandy for hijacking your post a bit :D

No have only mentioned what is obvious to me to my son, not DIL, to have Thyroid tests - sadly she has had 3 miscarriages too :( 1 ectopic.

Yes I did think of the connective tissue thing, also AI like you say and hereditary - like Thyroid trouble I suppose. That is a good explanation for folk in pain, it is being under constant attack and of course the body will try to fight back!

I'm sorry I don't know of any references for a connection (will look) - I just talk to folk a lot! & have 2 friends with EDS and they have extra neck ribs like me, take care J xx


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