Battling to get diagnosed

Hi has anyone on here suffered regular breathlessness - feeling like being squashed on exertion ..I've recently been diagnosed as asthmatic - aged 46 but I think it's thyroid related - my gp disagrees says it's not a symptom of thyroid illness ...I've ordered blood tests from horizon because I'm not getting anywhere with my nhs gp - he had a blank look on his face when I described issues with heat/ cold regulators / excess severe facial sweating / tiredness/ fatigue / poor sleep/ lost two toenails and have plantar fasciitis now / Dr kept asking if I snore ..I resigned from my job because I wasn't coping ...how hard is it when nhs blood test is within range but only basic test done .... when the results come back from horizon will Gp accept their findings

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  • Yes, I most definitely had breathlessness before I was diagnosed with hyperthyroidism. Some significant time before, actually. I remember climbing flights of stairs in our house and having to sit down to recover which was completely abnormal for me. I was given a chest x-ray and whatever those asthma tests are where you blow into a tube and feel a bit light headed afterwards! All results were normal. Because of course it wasn't my lungs, it was my thyroid. I had tachycardia too and an unpleasant sensation of chest tightness at my sternum. A year later I got very ill with full blown hyperthyroidism.

    I'm ill again at the moment and somewhat breathless again - it comes and goes. Do you know what your TSH blood result was when they tested it?

  • This is exactly how my tests are going regarding asthma/ gp referred me to a chest specialist after completely ignoring my thyroid discussion... they won't give me a copy GP said the results were just in range and nothing to be concerned about - I had a severe vitamin D deficiency which showed up - I've been breathless for just over a year it's awful 😕... I'm absolutely freezing today have 4 layers a dressing gown/ blanket and still cold - I'm usually always red hot like this morning in a vest top light fleece and sweating 😕... thank you for the tips I will do the bloods first thing in the morning and I'm getting the full works ☺️ I can carry on like this - my plantars are playing up too stinging and I've lost two nails just got brittle and came off...hoping these will find the problem 🤞

  • If you live in the UK, and your doctor is refusing to give you your results, he is breaking the law! And you can take measures to force him to give them to you. I'm sure he'd really prefer to just hand them over quietly... lol

  • Haha I'm sure - I already kicked off after seeing a stand in temp dr who said I was wasting her time!! The manager rang me had an hour on Tuesday and got nowhere really...they really don't know at all

  • No, they have no idea. That is why we have to learn as much as we can and take charge.

  • when the results come back from horizon will Gp accept their findings

    Some GPs will, some wont. If yours wont, invite him to repeat all the tests that Blue Horizon has done. Make sure that you always have your blood draw as early as possible in the morning, certainly no later than 8.30-9.00am, and fast overnight.

    Hopefully you've ordered the Thyroid Plus Eleven and are having vitamins and minerals tested as well as the full thyroid panel.

  • If you haven't ordered the plus eleven test, consider ringing and asking if they will swop out to that one

    Essential to test vitamins as well

  • I just ordered it today so I will ring them to check.. I've had enough re GP who looked blank has no understanding of thyroid and just keeps saying my profile doesn't match and I don't look like I'm hypothyroidism ?! I certainly feel like I am! and getting worse /struggling with weight aswell but being on here with my symptoms makes me more certain I'm underactive for sure - I can't walk far (breathing wise) and that's just come on in the last year and a half or so and I face sweat so easily and I can't cool down easily at all - have a fan on when it's 10degrees ...it's embarrassing puffing like an old lady 😕 And sweating non stop - started to feel so cold and hot lately like my temperature switch is broke and can't regulate

  • If your ferritin is low which so often happens in hypothyroid then breathlessness occurs

    You are legally entitled to all NHS test results inc ref ranges and its vital you get them as GPs are too good at claiming results are normal when they are not

  • Omg this sounds just like me! Plantar fasciitis and breathlessness has made me have to give up my exercise classes as im in agony afterwards! One min im freezing then im sweating and cant cool down . Ive put on about 2 stone which i cant shift not even a lb!! Ive been gluten free for over a year but still have some stomach issues.

  • I have bowel issues aswell thought unrelated but now thinking connected its IBS one minute can't go for days then up all night with cramps ....plantar fasciitis is horrendous so painful 😕 I'm face sweating today unbelievable it's not even warm 😩Last night had four layers and a blanket and hot bath I was so cold ... Hoping horizon blood tests come today or tomorrow so I can hopefully get started..I'm going to do the adrenal tests too next week as they are linked in case thyroid doesn't show anything ..I'm prettt certain they will though! Fatigue is chronic and no sleep yet again ...hope you get some relief we sound so similar x

  • Its just sooo frustrating when you know you have something wrong with you and all the signs point to it but because of one blood test coming back as normal, all the other symptoms are just ignored! They don't go away just because Im told my results were in the normal range!! Now today full of cold, I never used to pick things up but feel my immune system is so low Im getting everything going!! Waiting to hear results of my antibodies test I had last week, if they are normal then its off to get a private blood test I fear and try to find a doctor that will actually listen to me! Yes I hope you get sorted too, I feel your pain! x

  • Very very frustrating! My feet today 😮 ....OMG they sting.. I did something very embarrassing today and forgot how to spell my daughters name and birthday for ordering her cake ...this has been happening a lot like I just randomly can't remember how to spell something or what is called 😕

  • 'he had a blank look on his face when I described issues with...'

    Exactly! He knows nothing about symptoms. None of them do. Asthma is a hypo symptom, but breathing problems can also come from nutritional deficiencies - not that your doctor would know anything about that, either! Have you had your vit D, vit B12, folate and ferritin tested? If not, asking him to do them for you.

  • I had vit D tested which was critically low - gp gave me 1000 strength tabs daily and had an injection initially - he has referred me to a chest specialist which I feel is a waste of time - asked him for FULL thyroid and vitamins he said I don't think it's that 😡...hence why Im going private - 18 months of this hell is enough ... my nan/ mum and aunt all had underactive thyroid conditions ..I feel 80 odd not 45

  • Have you had your vit d tested since? Because that not a very high dose. You could try higher.

    Vit D3 has a lot of cofactors, that you should be taking with it. But, I very much doubt your doctor would know anything about them!

    First of all vit K2 - MK7. Taking vit D3 increases your uptake of calcium from food, so you need the K2 to make sure that calcium goes into your teeth and bones, and doesn't collect in the soft tissues.

    Then there's magnesium. Taking vit D3 lowers your magnesium, so you need to take some.

    And, you could try taking vit A with your vit D3, which could help with your breathing. :)

  • Thank you ☺️ I will get some and start AFTER my blood test is done so it's a true reading ..will post my results on here after ..hoping to get some answers

  • Ha, ha. I had a blank look on my final visit to a GP three months before I was finally completely on my knees and was diagnosed with Graves' disease.

    The doc sat back on her chair and just looked at me as if I was totally nuts then said I was 'needing my holiday!'

    When the great day comes and (if?) we are finally able to access our medical records online I will head straight for that consultation to see exactly what the doctor wrote up. At least she didn't offer me antidepressants!

    My other half says the outcome of that consultation will have been 'adjusted' by then but I'm not sure they would have enough hours in the day to adjust the records of every patient they've seen, especially the ones who have never complained.

  • You know what, I can get more angry when I hear about these GP's and their lack of knowledge. What symptoms do they think cause Thyroid conditions have?

    In answer to your question Peaches71, yes you can get breathless and all the symptoms you are experiencing, especially with the asthma. The asthma is likely to make it worse.

    However, as some of our friends have said, it could be that you are deficient in B12, could be anaemic and also deficient in Vitamin D, which again have similar symptoms to thyroid conditions especially underactive and go hand in hand with thyroid problems.

    I found out three years ago, I have sleep apnoea but then I was very poorly with pneumonia and I have to have oxygen at night. My cousin (male) I have just found out, also has an underactive thyroid and has sleep apnoea but just the ventilator to open his airways without oxygen. - Sleep apnoea is normally associated with being overweight, but that is a myth as it affects all shapes and sizes - my cousin is like a stick insect weight wise. However, if you do snore and snore loudly and suddenly wake up because of the snoring, it is likely as many, you might have some form of it. All I know is, I feel completely different and rested when I have used my machine to when I haven't.

    I have another cousin, (female) who has thyroid issues but not got sleep apnoea, so anyone can have it and not necessarily with a thyroid condition.

    By law, the GP surgery has to give you the results either verbally or print out. I would report them if they don't or change surgery. I will always ask the receptionist for them, write them down and then ask to speak to the Dr - I just remind the receptionist that they are not medically trained.

    Let us know how you get on.

    Take care but I think you need to be checked for B12, anaemia and vitamin D deficiency.

    :)

  • How did you get practical help for the apnoea? I've had it for over 30 years, but I 'failed' two sleep studies, because I couldn't get off to sleep at all in the conditions provided (need to sleep in a high-backed chair). So, no treatment!

  • They found out with me when I was in hospital as I was really poorly (life threatening pneumonia) so I was hooked up to all the machines, so they could see what was going on. I was stopping breathing as much as 30 times an hour! My husband ironically has just been diagnosed, but his is not as severe. I am improving but it may be permanent, as they think I may have always had it. I also have damage to my lung as well. But they have told my husband, he could potentially be ok.

    He had to fill in some questionnaires from the GP, the Sleep unit then sent some more questionnaires, plus one for me to fill out. He then got invited to an appointment to collect a oximetry device which he had to wear on his wrist at home for two consecutive nights. Then he had to go back for a follow up appointment and they tell you the results. A bit long winded but necessary

    Hope this helps and you can get a consultation :)

  • What a time you've had...so glad you recovered to tell the tale. :-)

    Your husband's diagnostic procedure sounds much less of a faff than the daft things I had to do. I'll try to find out if I can just get away with wearing an oximeter. Really interesting that your husband had to fill in a Q too.

    During the two sleep studies I had I was required to lie down flat, which I can't do, because then my throat closes up as I relax. Then I had wires attached all over my head and body, which made it impossible to move, sit or rest normally, so I ended up with very painful, stiff joints for several weeks afterwards. (With hindsight the pain was exacerbated by mucin build-up.) The oximeter was taped to my finger. Oh, and a video camera was pointing at me throughout, even when I had to call for a commode.

    Because I couldn't sleep at all, the results were 'normal, no action'. The procedures were a complete farce. The consultant Prof made it clear that, by dint of being a non-alcoholic, non-smoking female, I did not fit his research parameters, so he had no interest in helping me. :-(

  • That's terrible! You didn't sleep at all so you passed the test! You really couldn't make that up. Mind you it reminds me of when I was asked by the doctor to blow into a peak flow meter to check my asthma - he took it from me, looked at it and said 'that's not good enough, do it again!' Next time wasn't great either - nothing to do with the fact that I had asthma I suppose.

  • Sorry, but you did make me laugh! All those years of intense training, with such stupidity as the result...

  • Well to be honest, I was half expecting him to have to go in to hospital for a night study, but instead he wore a wrist monitor thingy, a bit like a heart monitor for the two nights. He can't lie flat either due to asthma and arthritis.

    The one thing I don't like with the cpap machine is that I have to sleep upright, as I feel claustrophobic if I lie flat and it hurts my back. I used to sleep on my side but can't do that anymore - so you are semi stuck in one position and I feel like the tin man in the morning that needs oiling due to stiffness in the old muscles.

    When I was discharged from hospital, I have to go back as an outpatient and do some breathing tests. I do not have asthma but evidently small lungs and tubes?? My peak flow readings are terrible!

    The Consultant you saw sounds barmy to me. I do not drink or smoke, but was told that anyone who snores, has a high risk of having some form of sleep apnoea especially if they suddenly stop and wake themselves up, as your Brain is saying "Breathe" so he is talking BS. Nothing surprises me these days,

    I once had a GP who told me that I did not fit the criteria for the flu jab. I only started having it once I became a carer. Sadly, I am not a carer anymore, but I am will say nothing, until asked.

    What Hospital were you under when the study was done? I am under the BRI in Bristol, same as my husband.

    :)

  • The first study was done at the QMC in Nottingham, the second about 5 years later at the Freeman in Newcastle. The same procedures were used in each place.

    I've also had endoscopies and various scans to look at the structure in my throat, but they were looking for big, obvious problems like tumours or areas of inflammation. One doctor I used to see privately thought that the weakness I can feel in my throat is likely to be a neurological or connective tissue problem, and that it would not be likely to show up on standard scans. He just described it as 'obstructive' apnoea.

    I've been sleeping upright in a chair, head on one side for around 25 years. Like you, I find sleeping in one position doesn't get any easier. A CPAP mask sounds quite difficult to get used to.

  • I just do not understand why they have not considered other studies, such as my husbands. To see whether you have apnoea or not. Mine is called Obstructive sleep apnoea.

    Regarding the cpap mask, it can be a little suffocating at first, but if you relax and let it take over, it does help your lungs and you do sleep more soundly. However, even with the humidifier, it can make you have a dry throat and mouth, so you end up stopping the darn thing to have several slurps of water.

    I did try and slip a straw under my mask, but that was a disaster, as the oxygen just made it bubble up everywhere. Certainly not one of my better ideas and a bit messy!

  • If ever I get a CPAP device, I'll bear that in mind. :-D

  • ;) ;)

  • Follow on for the Sleep apnoea - My husband does now have to go in for a sleep study for one night, to rule out a couple of things. The cpap is working really well for him, gone from 16 to 0.92 apnoea since using he started using the cpap.

    The reason he has to go in, is because he is a very light sleeper and very restless and can't remember dreaming. So they need to know what is happening and whether is brain and body are getting enough rest.

  • Article on sleep apnea and Hashimoto's

    thyroidpharmacist.com/artic...

  • Thanks for the link, very interesting.

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