Firstly, thank you to everyone who contributes to this forum, which is a god send to those of us with GP’s who aren’t informed about thyroid disease, to say the least. I’m sorry if this post is a little long but I’m putting down everything I think might be relevant – essentially I’ve had very little support from my GP, and am hoping that the forum can be of more help.
I was first diagnosed with Hypothyroidism about 20 years ago. I had antibodies present at the time, but no mention was made of Hashimoto’s then or after. Since then I have taken 75mg Levothyroxine and 10mg Liothyronine daily. This has very rarely been altered. I take this on an empty stomach at night. Since the start of the Covid crisis the brands of my Thyroid medication seem to have changed severaI times.
I have also had well controlled asthma since childhood, and have taken Clenil Modulite inhaler for many years, until it was recently changed to Fostair, during an infection.
Generally I am healthy but over the years have had regular incidents of fatigue, along with a susceptibility to infection like colds and flu which also tend to last slightly longer than most people. I am also very sensitive to cold, and hot weather, and sudden fluctuations in temperature. It often feels like I slow down when the cold weather arrives.
Another feature has been how energy levels seem to crash after stress, and I also might occasionally become ill with infections like colds or chest infections at the same time.
About two years ago I had some recurring bloating or stomach ache intermittently. It went away after I become more thoroughly gluten free, but occasionally returns. About a year ago I had a problem with acid reflux, which was successfully treated by a herbalist along with some dietary changes, but it also occasionally comes back.
In April both myself and my partner are very likely to have had Covid 19 for about three weeks (due to symptoms) but weren’t tested.
Recently I had a severe chest infection/ pneumonia. The infection came on after a prolonged period of stress and pushing myself work-wise. It did not respond to either antibiotics or particularly well to the steroid Prednisolone (which was prescribed for one week). However, thankfully my chest became much better after about 2 months, but during the illness I also felt very drowsy, fatigued, and slightly ‘out of it’, and this has continued after the chest symptoms have cleared. I now tend to have these symptoms particularly in the mornings and they seem to clear as the day goes on. I also just intermittently feel generally unwell.
And so the main questions I am asking myself now is whether this severe drowsiness etc. is simply an after effect of the pneumonia or perhaps my thyroid? Perhaps there is a link between the two even? Is it perhaps adrenal? Etc.
I recently had a blood test. This was done on an empty stomach at about 10.00 am. I had taken my medication at 9.00 pm the previous evening. I include it below as I’m a little confused about what it means; the TSH is low but the thyroid hormones seem ok, and I don’t really know the significance of the presence of antibodies in relation to these.
As I am not feeling well I would love to simply ask the advice of my GP, but as I understand it her main concern is the removal of my Liothyronine due to a) perceived health risks, and b) the fact that it is expensive and not routinely prescribed. I have never had any ill effects that I know of due to this medication. It was originally prescribed by a senior NHS consultant at my suggestion as I was not feeling particularly better on Thyroxine alone. I am certainly open to doing more tests privately and/ or seeing an endocrinologist in the Kent area, anything really if anyone has any suggestions, please. Basically, any advice would be appreciated please as I’ve been unwell for so long now.
Test Results:
Inflammation:
CRP HS 0.53mg/L (Range: <5)
Iron Status:
Ferritin 96.10ug/L (Range: 30-400)
Vitamins:
Folate - Serum 9.94ug/L (Range: > 3.89)
Vitamin B12 - Active 124.000 pool/L (Range: > 37.5)
Are your vitamins naturally that good, or do you supplement to maintain good levels?
Do you think chest infection could be linked to long Covid
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test and last 2.5mcg T3 8-12 hours before test?
Many people on levothyroxine plus T3 would find that low a dose of levothyroxine and low Ft4 too low
Ft4 is only 30% through range
Would GP increase levothyroxine dose to 100mcg as a trial?
Hi, thank you for the reply. Yes, I do supplement vitamin D and B only. I had thought about long Covid, but I did have about 6-7 months after the April infection when I felt fine, and so I'm not sure. Regarding the test, it was done on a completely empty stomach and I had taken my usual dose of 75mg Levothyroxine and 10mg Liothyronine (taken all at once) 13 hours before. I have only ever taken my 10mg Liothyronine in one go, most recently at night along with the Levothyroxine, which seemed to be working ok. It's interesting what you say about the Ft4 being only 30% of the range, I presumed things looked fairly high, and unfortunately based on earlier experiences I also think the doctor may use the TSH being low to perhaps remove the T3. I have been really sensitive to cold for about 7-10 years and so maybe it is too low. Thank you for the information.
Hello there ... I had tsh readings of below 0.05 so my GP with his so called wisdom increased my thyroxine from 125 daily to 150 daily ... so since July I have been so unwell .... I have high antibodies but everything else was relatively normal ... my GP has been over dosing the thyroxine ...I have never taken anything else just thyroxine ... I have been diagnosed with Hashimotos disease ...by an endocrynologist and he couldn’t believe they had increased my meds and not decreased them.... I am now on 100mcg levothyroxine and within days I felt much better .... so I’m keeping y fingers crossed that this continues ... try to get an endocrinologist to go through your results as they do know what they are talking about .... good luck xx
Thanks for the reply - I’m really pleased to hear you’re doing well. Yes, I’m sure you’re right about the endocrinologist - I’ve decided to find one privately as my GP doesn’t have a clue. I’ll let you know how I get on!
You need to tell the doctor you would like to be referred ... you have every right to do that ... the thing is doctors are General Practitioners and they don’t know everything about everything so tell them to refer you as you would like a consultant in the field for their opinion ... keep us posted how you get on and Merry Christmas to you and yours x🎄
Rather than pay to see an endocrinologist privately, why not spend money on thorough testing to see how good or bad your results actually are for thyroid and nutrients? Then you can post the results on here and ask for feedback.
Sorry to hear you are going through it all and hope things do improve.Fatigue or simply just no energy is horrible.
I am only on 50 mcg of Levo and also had different brands, but had that with all my meds. I do have several health issues and as I was told some of mine have similar symptoms to hypothyroidism, so it is difficult to know which it is really causing the things you are feeling.
My weight is ok, I have osteoarthritis, from head to foot, osteoporosis, controlled asthma, stomach problems, stage 1 liver disease and waiting for heart scans, yet apart from all that I feel ok. My hair has gone very dry and thinning, but I use a good thickening shampoo and conditioner and it is brilliant, plus massage in black caster oil to nourish scalp, also m eyebrows have thinned.
Hypothyroidism affects so much inside and out in some ways it is quite cruel, you feel crap, weight gain, hair loss or like straw, even so never give up. I have lost weight, for the first time since being diagnosed about 3-4 years ago I cannot even remember, another thing memory is affected too.
I make sure I walk each day, put my make up on, do something I enjoy.
In the beginning I did feel so tired, and sometimes extremely down, hated the weight gain and lack of energy. I had to push myself to do things, I also don't sleep well, the aches and pains some days I jyst wanted to scream.
One day I realised I was not going to let it define me or take over me and that I was going to be in control NOT my thyroid control me.
So now I am more the old me, even though I still have some bad days I just adapt that day so I have no guilt if I do little.
We are all different and will find our way through this maze, as sometimes it feels like there is no way out and a feeling of being lost, but there is a way and we do have to find it.
My gp was ok but he was far too old over 80 and I lost faith in his ability and felt I was not listened to or really looked after properly, especially having multiple health issues.
This year I researched local gp's and found a brilliant practice and a good doctor which I would advise anyone to do if they feel how I felt.
So even though we have all had a bad year due to covid, I am remaining positive and not allowing the situation to bring me down, don't get me wrong some days have been hard quite sad listening to the news, we do have to be hopeful and positive even if we have to dig deep within us we can find it.
So keep safe all and whatever you can do, enjoy Christmas in whatever way you can 🎀⛄⛄⛄🎄🎄🎄🎁🎁🎁🎀
Hi Lottie67, thank you for the reply. I'm so sorry to hear about your health problems, but inspired by your attitude to it all.
I feel a bit chastened, and lucky too, hearing about the multiple things so many of you have to deal with, and here I am with a bit of fatigue and drowsiness!
Many things you say really resonate with me. I told myself a long time ago I would stop obsessing about the hypothyroidism and just get on with things, but I suppose we all have ups and downs, good and bad days with this, and it can sap your confidence at times. I think I'm encountering a set back at the moment, but I have plans for things I want to do, and most of the time I'm sort of ok - I had told myself some time ago that I wasn't going to be defined by my thyroid condition either, and so thank you for reminding me.
In all honesty there are two ways I can look at my life after being diagnosed with Hypothyroidism - the first is that I'm someone who has worked around it, changed schedules, made excuses, accepted that some days I might just be lying around, but pretty much functioned, being taken as fully well, if you like. And there's another way, which is that basically I've never had enough energy to do what I want to do since my diagnosis, and it has sort of ruined my life, in a way. I go between these two ways of thinking.
Something I have decided to do is to be less accepting of fluctuations in my condition, to get tested more often and at the moment to see an endocrinologist, with a bit of luck.
My GP is truly dreadful, and although the practice has struggled due to various reasons there isn't really an excuse for how they operate, which borders on clinical neglect, and so like you i'm going to move to another GP - I figure they couldn't be any worse. I'm really pleased to hear youv'e found a good one - its not until I got a bad one I realised what I'd taken for granted for many years!
Thank you for your positivity in the face of your own difficulties and those of the world in general at the moment. Wishing you the best of luck and good health for 2022.
Thanks Ed, I do not wish to assume but are you male, I ask because to my knowledge more women than men suffer with hypothyroidism.Yes positivity sees one through many things, I had a very strong positive mother who never complained about her health and she had health issues, so it must have rubbed off on me.
Yes it can fluctuate and thats a big downside.
Glad what I said helped and positivity is the only way, even on the down days I remember there are plenty worse off than me.
Stay strong keep safe and all the best for Christmas🎄🎄⛄⛄🎄🎄
Hi Lottie67, yes, I am indeed male and I’m sure you’re right about Hypothyroidism affecting women disproportionately, but thyroid issues run in the family unfortunately for both men and women. Stay safe and positive, Ed.
Hi there Ed2000. I have been prescribed Predisolone approx 6 Months back I take 3 a day as prescribed but I have just been told by my Doctor that the code I have been prescribed by another Doctor in the Practice
Hi Ed2000 I did respond but, annoyingly my fault!!! I managed to get it deleted! I take
14 prescribed medications each Day most very strong did to my extensive health issues, I was prescribed Predisolone tablets code 3 each Morning one of the Doctors from my practice as phoned me to tell me the Dose is far to high especially in view of my multiple Health issues, so I do not feel I am able to offer any advice at moment! But this is/was a mistake I one of my Doctors but I do Not believe with the right Dosage there should be a Problem!!!!
Hi Janicej, thank you for the reply. Your'e not the only one who presses the wrong button, believe me! Even more embarrassing when its at work! I was given Prednisolone for a week only, and it didn't seem to have cause any ill effects, but nor did it do much for the chest infection. My heart goes out to you juggling so many medications, I know from experience with my mum that it can involve an awful lot of detective work (and a decent GP) when you contract a new illness, or suffer any side effects. At least your surgery picked up on the problem with the Prednisolone, not all would I'm sure. All the best and take care of yourself,
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