Confused.com Dr S v GP advize please

I have been frantically trying to resolve my breathing issue for the last 8 weeks. as I am off on holiday for 5 weeks. The last 7 days being in Tibet at altitudes over 3000m

Got referral letter at first request to see Dr S. Saw him yesterday on the blood results he recommended increasing Eltroxin to 150 for 5 weeks and then 175 for 4 weeks then see him again.

Saw GP this morning. New to the practice. Who checked the flowmeter readings I have recorded since March said not good. surprise surprise. She then looked at my last thyroid bloods

T4 above range 29 pmol/L (10.0 - 19.8)

Serum TSH level below range >0.1 mu/L (0.3 - 5.5)

seru m free triiodothyronine level 6.2 pmol/L (3.5 - 6.7)

She says that the overdose is what is making me breathless and putting a strain on my heart and lungs. Told her I just want to feel better and that I tried this week 100 only on one day and it was awful

She says need to reduce to 100 and 125 alternate days and then try to get down to 100 from when I return in 5 weeks

Blood test first thing Monday before TSH and Vit deficiencies so has results when I get back and to take another blood test on my return.

She has given me 5 days steroids to take to help with breathing and another 5 days for me to take if needed when in Tibet.

Any ideas who I follow?

39 Replies

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  • I don't know if this article on breathing problems will help.

    web.archive.org/web/2010122...

  • Thanks Shaws. Will take this to GP on my return re change to possible T3/T4 combination

  • Low iron can make you breathless - have you had this checked.

    Moggie x

  • Hi Moggie It will be but will not have results prior to travel. I take the Nutri multivit for thyroid. only one a day,maybe I could reduce the dose of Eltroxin and increase the multivit as can take 3 a day. I will be able to eat lots of kelp whilst away in China

  • you 'must' have your iron checked, a simple multivitamin even in incrased doses will not make it normal/good if it's suboptimal/low.

    also low b12 can give breathlessness

  • So exactly WHAT dose are you taking right now and what were you thinking of reducing it to and what multi vitamins are you taking?

    Moggie x

    p.s. If you use the "reply to this" button under my name in blue I will get an email to say you have answered me - otherwise I might miss it (likewise anyone else you are answering)

  • Thanks Moggie. GP dosage was 125 per day. Dr S says up to 150 until back off holiday (away 31 days) then up again to 175 for 4 weeks. Got sufficient supply to do this. Took extra 25 when got home last night and full 150 this am. GP says to reduce to 100 and 125 alternate days and try to be on 100 when I get back. has given me steroids and altitude sickness meds for the last 7 days in Tibet only to be taken if needed.

    20mg fluoxitine a day and 2 inhalers. getting anxious about all this all because I get breathless walking up a slope (Great Wall of China) and being above 3000m for 7 days ALTHOUGH we sleep below that every night

    Vits Been to buy 1000 ug to take 1 a day. 1 drop vit D 25ug Emulsified per day 1 Nutri Thyroid Complex

    Phew shake rattle and roll

  • I would always follow Dr S over my own or any GP out there.

    If Dr S is aware of your blood results follow his advice, if he's not then call him and tell him and see what he says.

    Also, never take any T4 for at least 12 hours prior to your blood draw (have you taken any in the 12 hours before that blood test?)

  • Thanks Nobodysdriving I was stupid enough to have taken 125 the morning before the test. Will not do that again! even so the previous bloods when I did not take it were similar.

    These results were in the bundle he saw yesterday

  • In that case he knows the results, so don't worry, follow his advice :)

    I was there yesterday too, at 4:30pm I loved seeing him, it had been a good 7 months since my last appt, what time were you there? :)

  • My original appointment was 5.30 but there was a cancellation so was there 2.30 to 3.30.would have seen you if not changed appointment. The hour passes so quickly. Glad a colleague had warned me about his sense of humour as he suggested I needed worming

  • ROFL, yes that sounds like him :D

    he's 'cheeky' I have to say ;) :D

    love him to bits though :)

  • He had a go at me (nicely) because I could not be specific about how long been on125 at least he laughed when I said I suffer from memory fog!

  • Did you have to sniff the mystery tablet?

  • nope, what is it?? ?? :D

  • The lady before me was on Armour and the latest tablets did not smell and did not have the name on them just an 'E' Receptionist and Dr S searching for a bottle i the building as the mystery tablet did not have a smell! the naughty tablet was on his desk

  • Hi Nobodysdriving,

    Why do you recommend not taking T4 for at least 12 hours before blood draw? From the medical evidence I've read T4 has a half life of 8 days meaning that you would have to not take the T4 for about 2 weeks for your blood tests to show your true TSH, FT4 and FT3. Dr Peatfied-Durrant's book states the half life and even he says you can go on holiday, forget your tablets and you are okay for 10 days before you start feeling ill.

  • They do say that t4 has a long half life but have you ever forgotten to take your levo? I have and i tell you i felt rotten all day so i dont think its all that long as they claim, also try not taking it before a blood test and note the difference in your results its quite noticeable.

  • Hi MCoates,

    No, I never forgotten to take my Levo. I've only been taking it for nearly 6 weeks and on 75mcg daily but it's not making a difference to my symptoms of hypothyroidism following removal of right thyroid lobe due to cancer. My endo surgeon thinks I should wait and see because he thinks the left lobe will be producing the necessary hormones, but I'm not convinced. I might not take my Levo for a day or so before my next round of blood tests in 3 weeks time.

  • I have a multitude of symptoms but the breathlessness is by far the most debilitating and it is very much worse since reducing my dose of Armour (it was making my heart beat too fast). I too see Dr S and he has said all along that it will recover when I am on a high enough dose of replacement and the muscles strengthen. I am convinced that this is right as it was beginning to improve on the higher dose and the jerking in my diaphragm had disappeared and has now returned.

  • Thanks debjs. My peakflow was the highest it has been this morning after taking an extre 25 last night. took 150 this am. just back from buying B12. Must remember NOT to take anything on Monday before bllods

  • I made the mistake of taking my meds before last blood tests and the difference in results was quite alarming!

  • Oh well only got to wait about 6 weeks to compare

  • I totally agree with you nobodysdriving. I would always always follow the advice of Dr S. I am actually one of the fortunate ones (for a change). My GP is being guided by Dr S totally and has accepted him as a thyroid specialist without question.She even suggested that I have lots of blood tests done before I see Dr S next so I can take the results with me for his opinion. How lucky am I !

  • Very Karispitit We have 4 GP's and been trying for 8 weeks to see my regular GP. She is so good you can not get into see her unless it s an emergency. The Dr I saw is and she wrote the referral with no argument but it took 2 weeks to obtain and 2 weeks to see Dr S. Playing the get an urgent appointment game I had to see the new GP yesterday. She had neve heard of Dr Skinner and said that she was unwilling to prescribe until saw his letter NO TIME.

    She saw I was anxious and said she wanted to give me a cuddle. Got to get a blood test before I go away so Monday will be stressful. She did look at my peak flow charts I had been keeping and has given me steroids for now and spare to take with me to Tibet. I can usually cope with most things but having never been breathless (now 63) the nthought of not being able to walk the great wall and Ramble up the Tibetan mountains is killing me. Waited so long for this holiday and now stressed it may all be ruined

  • If your T3 is normal - then maybe you are not hyper.... ....

  • these were the results perhaps you can advise?

    T4 above range 29 pmol/L (10.0 - 19.8)

    Serum TSH level below range >0.1 mu/L (0.3 - 5.5)

    seru m free triiodothyronine level 6.2 pmol/L (3.5 - 6.7)

  • Look up Buteyko breathing on the web. It is much harder to do than it sounds but really effective for breathlessness,. On YouTube look for the Buteyko kids videos to see how to do some of the exercises. The kids' ones are about all I can manage, and not as well as the children!

    Mouth breathing (and doing the peak flow thing) actaully make breathelessness worse. Also check B12. I went from 10 puffs of Ventolin a day to about one every 3 months, but my peak flow is worse than when I was really bad. Probably as useful as a TSH test for thyroid hormones ;-)

  • Thanks angel I will try that. As having blood test Monday decided to take 100 today just been asleep in the chair for 1 1/2 hours not done that for a long while. Got to finish packing tomorrow hope I have the energy after another low dose.

  • Hi all i have moved to Dorset from London and am struggling to find a good GP whom understands about T3 and B12 levels. Where can I locate this Dr Skinner who sounds wonderful. Last blood test T3 & T4 came back low even though i had taken my meds just before blood test. T4 increased to 100mcg but GP didn't mention upping T3. which London hosp put me on 20 mcgs 3 years ago.

    I have a long complicated history with removal of 2/3 small bowel hence have B12 inj 8 weekly since 1983, malabsorption syndrome, osteoporosis to name but a few.

    Brain fog +++, slurred speech when tired, long term chronic pain, esp in muscles, joints & feet to the point where I can barely walk and have to resort to mob scooter, TATT and breathless all the time.

    I get referred to different specialists but not one has ever looked at me as a whole person so care is fragmented and interestingly not one ever mentions my hypothyroidism or B12 deficiency.I am 53 yeas old but feel trapped in the body of a 90 yr old. ( Despite this i look extremely well & have a smiley face which makes Dr's think I'm ok).

    If anyone out there has any advice or can point me in the right direction of a good specialist, I would be eternally grateful as feel i am just existing atm.

    Thank you for this wonderful website, i feel i have so much to learn!!!

    Love Cezziex

  • I would suggest posting this as a new question - comments can often get missed.. :)

    Louise

    x

  • Thanks Louise, do i have to write it out again to post.

    Carey x

  • Birmingham or Glasgow

  • Thanks Meki

    I really hope you get sorted soon

    Cezzie x

  • Hi Meki

    I just want to add my experience of being at high altitude last Nov in Peru (3,000-3,600m). I travelled with 4 friends not hypo. We all felt terrible for the first 2 days, but experienced different symptoms ranging from diarrhoea, faintness, tirdness but I was the only one to be breathless. I had to walk very slowly, rest a lot and even the slightest incline or steps were incredibly difficult - I would have to stop to breathe. It was as if I couldn't get enough oxygen into my body. The others were fine after resting for 4-6 hrs but I was not. This problem lasted the whole trip.

    I also took the altitude medicine the whole time - the others stopped after 2 days. The advice on arriving at altitude is to lie down for 4-6 hrs this gives time for the body to adjust - you really must do this! Try to drink plenty of water, avoid alcohol and caffeine.

    I don't know whether it was my thyroid which caused me the problems or I was just an unlucky person as I understand this can happen.

    I hope this doesn't happen to you and that you have a fantastic holiday. I still throughly enjoyed my adventure despite the inconvenience!

    Mary

  • Thanks Mary

    Good to know you enjoyed Peru, which was the next on my bucket list

    GP has given me steroids to take before I arrive and Diamox should I need it so feeling a bit more confident now. Just dithering over the drop or up dosage! Been C*** today on 100 but will do 100 again tomorrow and nothing before bloods on Monday, followed by 125 before driving to London for flight

    I have had memory fog all day only get it when reduce dosage but GP says heart and lungs working to hard. Determined to enjoy my holiday. booked when well

  • Hi I am new to thyroid issues but noticed you were on a nutri multi vitamin for thyroid. I just wanted to say that I was given a nutri supplement by one private doctor Nutri T convert after she saw my blood results. She said I had a conversion problem. Anyway I took these tablets and became much worse Breathless, terrible head fog, exhaustion, aches in joints. Just awful. In the end I went to my GP who diagnosed with the help of the same blood test Hypthyroism and gave me thyroxin. I showed him the tablets he said oh it's just a multivitamin it's fine to take. I did not feel better on the thyroxin and on a hunch looked up the T Convert ingredients. What I discovered is that the main ingredient should only be taken under medical supervision by people with hyper or hypo thyroid issues and only with constant monitoring of T4 and T3. I am not sure if this will help but thought I would mention it in case it's as simple as an adverse reaction to a supplement. It has taken a couple of weeks to feel better once I stopped taking it.

  • Dr S is more experienced than any GP In thyroid problems.

  • tpauk.com/articles/2413-air...

    This is an article about breathing problems in hypothyroidism.

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