Ordering a Blue Horizon test today: I have had... - Thyroid UK

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Ordering a Blue Horizon test today

13 Replies

I have had enough of feeling this unwell. This week has by far been the worst for me and I have had enough. I am ordering a Blue Horizon test today. I last did one on the 18th January. My GP told me to wait until the end of March before re testing but I can't wait any longer. I want one more result and I will demand I am taken seriously. It's been 7 weeks since I tested. Will this be too soon to re test? I am sure it will be and I can't afford to throw money away but I also can't wait another 4 weeks.

This week I feel drained. On Friday last week I felt a little less tired so I did some yoga, well the next day I was in bed ill all day long and since then I haven't bounced back. I am told this sounds more like CFS but can hypothyroidism cause this? I feel so weak in my legs, foggy headed, dreadful fatigue, I am now feeling quite low. I have no support network, I am beyond drained. Sometimes I have better days but still have the symptoms, then I have days where I call it a crash where I can't function. On those days I still have to cook and clean, do the school run but it's so hard when feeling this unwell. I am 36 and have 3 children, I need to feel well again. All I did yesterday was cry, it was my 5th day of not bouncing back, no energy, weakness in my body, feeling beyond tired, hot stinging eyes as soon as I woke up... I felt ill. I am sick of my GP saying it's my anxiety or depression. Anxiety does not make you ill after some light exercise, you don't end up bed bound just for doing a bit of yoga. I am praying it's not CFS and it is just my thyroid because at least this can be fixed with thyroxine.

I spoke to a friend last night that I didn't realise had hypothyroidism, she was shocked I am not being treated. Her TSH was only 7.1 when she was treated. She never had her T4 tested, her GP diagnosed based on her TSH and symptoms. He did not leave her to wait until her TSH hit 10. She was very ill and felt exactly how I feel. She has told me to get another opinion but I have exhausted 3 at my surgery and only this last one is now monitoring me and saying I am subclinical. The previous GP said I had chronic fatigue and there was nothing wrong with my results as I had no antibodies, what a load of crap.

I attach my last result from Blue Horizon. I am hoping it won't be too soon. I had the THyroid plus 6 test, will this one be enough? I had my ferritin, b12 etc... tested in December on the NHS and they were starting to rise from the summer test which showed them as low.

Thank you

Julie

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13 Replies
Rapunzel profile image
Rapunzel

(((Julie)))

If you were on the continent or in the US you would be treated if your TSH was >3. I know how ill you must be feeling. With a TSH of 16, my GP told me that I was 'borderline' hypo. I thought I was dying, I really did.

Standard treatment for this condition is levothyroxine, it costs next to nothing and once stabilised a blood test every year. The wisdom seems to be that around 80% of us get well if we are adequately medicated with levo, which you will also read as being called T4.

In the meanwhile, healthunlocked.com/thyroidu... a post by the fabulous Grey Goose may give some insight on some of the things you might do to help yourself. Some find a gluten free diet helps immeasurably

This can be a long and rocky road back to feeling well. Hoping that yours is swift and sweet :) xx

in reply toRapunzel

Thank you so much Rapunzel.

My GP has told me with my TSH at 6.54 I am subclinical and that he cannot give me a trial of thyroxine as my T4 is within range which proves I dont need treatment right now, and if he did he could infact make me hyperthyroid by medicating before needed. I believed this but now realise he is so wrong as some GP's treat on the basis of TSH being over range only.

I have tried 3 GPs in my surgery and this last one is the only one who has diagnosed subclinical. 2 others told me it was in my head. Hence why I went private and had a test. My NHS test in August showed my T4 was 10.2 (7-17) and TSH was 5.35 (0.35-5.50). My GP said all was normal.

I feel very ill daily. I have 3 children to take care of. I now can't do housework or I feel faint, and shaky. I have to rest all day. Lately I even find the school run tough and cooking a nightmare I have to have a chair nearby. My children are 13, 12 & 10 and they are a great support to me. They feed the pets, tidy their rooms... they are amazing. My husband lets me go to bed as soon as he gets home and at weekends he cooks. I am lucky to have them.

I cried last weekend worried I would die. I did gentle yoga on the Friday and by Saturday I was ill in bed feeling shaky and weak. Would exertion really make you ill the next day with thyroid or is that more CFS/ME?

I not always cold but when i was my hair I shiver for ages after, same after a shower. If it is cold I feel it worse than anyone, I have heavy stinging eyes, eyebrows been thinning for years, very plump face and saggy around my jaw line and I have aged terribly under my eyes in recent months, bowel problems at times, leg weakness, panic and anxiety and I am now agoraphobic so my GP comes to my house :-( I feel a total freak and am being treated like I am a hypochondriac by my practice. It's horrible. I feel so weak and ill every day, taking care of my family is becoming harder and harder as the weeks go by.

Thank you for your help i appreciate it.

Julie

in reply toRapunzel

I forgot to mention, I have been gluten free now for 3 months.

Sddixy profile image
Sddixy

Hey. It's not too early to test I wouldn't think. Make sure you do early (8/9am) fasting bloods only drink water.

I'm suprised they are not treating you as your bloods she that you are hypo.

Is it possible to change surgery? I know it's a pain but it may be worth it.

Other option would be to self medicate if the doctor won't treat you.

You could ask the doctor to do a trial treatment.

I can honestly say tho your symptoms are that of hypothyroidism. When you do finally get treated it will be a long road and you won't feel better quickly.

Hope you get sorted though

in reply toSddixy

Thank you.

Yes I will do it fasted. I took the test at 7.30amm last night, I am up at 7 and have to be up and about by 7.30 with 3 kids to get ready. Hope 7.30 is fine.

My GP has told me with my TSH at 6.54 I am subclinical and that he cannot give me a trial of thyroxine as my T4 is within range which proves I dont need treatment right now, and if he did he could infact make me hyperthyroid by medicating before needed. I believed this but now realise he is so wrong as some GP's treat on the basis of TSH being over range only.

I have tried 3 GPs in my surgery and this last one is the only one who has diagnosed subclinical. 2 others told me it was in my head. Hence why I went private and had a test. My NHS test in August showed my T4 was 10.2 (7-17) and TSH was 5.35 (0.35-5.50). My GP said all was normal.

I not always cold but when i was my hair I shiver for ages after, same after a shower. If it is cold I feel it worse than anyone, I have heavy stinging eyes, eyebrows been thinning for years, very plump face and saggy around my jaw line and I have aged terribly under my eyes in recent months, bowel problems at times, leg weakness, panic and anxiety and I am now agoraphobic so my GP comes to my house :-( I feel a total freak and am being treated like I am a hypochondriac by my practice. It's horrible. I feel so weak and ill every day, taking care of my family is becoming harder and harder as the weeks go by.

Thank you for your help i appreciate it.

Julie

Sddixy profile image
Sddixy

Bless you julie. On your lab results it is in red as Hi. Therefore I don't know how they can class you a subclinical. I would seriously think about going to a different surgery all together of its possible. Not just a different doctor.

All surgeries to go off different ranges.

My doctors it is tsh of (0.4-4.0) and FT4 is (10-25)

I really hope you get the help you need soon

in reply toSddixy

Thank you.

I am in the UK and the ranges here on NHS are a little different to the private lab used. TSH is 0.35-5.50 and T4 7-17 but Blue Horizon was TSH 0.27-4.20 and T4 12-22.

My GP said sublinical is when a patient is over range but under 10 on the TSH. He said they class anyone under 10 but over 5 subclinical.

Thank you. I need help soon as I feel so ill.

Julie

Sddixy profile image
Sddixy

I'm in the UK too. I live near Newcastle. This is what I'm saying every doctors surgery is different. Another doctors surgery may have different ranges where they would treat you.

When I was diagnosed mine was quite high tsh >99 my docs Labs only record that far so don't know what the exact figure was.

HarryE profile image
HarryE

You really should know whether your doctor is going to take any notice of the results if you are going to spend more money on another test. It is grossly unfair that you haven't been treated anyway, but I think that money would be better spent on getting yourself some medication than carrying on battling with this surgery.

SilverAvocado profile image
SilverAvocado

The kind of tiredness you describe can definitely by caused by hypothyroid. They call it 'payback', or something like that, when you get tired later. I can get it hours, days, or even weeks later, even if I've felt quite fine when doing the activity.

I don't think you can really distinguish between CFS and hypothyroid in terms of symptoms. There are a few characteristic symptoms CFS is supposed to have, like a sore throat, but you can often have that from hypothyroid, too. Many people think that lots of CFS is Just hypothyroid, or will respond to thyroxine even if the blood looks normal.

Pastille profile image
Pastille

Aww I feel so sorry for you! I can't believe a doctor said 6.54 was subclinical !! He is so out of order. I totally relate to the exercise catching up, but yoga is stiil great for thyroid, maybe when you get properly medicated try again. All the best, you have a fight on your hands but you will get stronger and get them told. I'm so glad you have a good and caring husband. Good luck

in reply toPastille

Thank you.

I re tested my thyroid last week and 7 weeks on my tsh is now 7.51. Confusing thing is ft4 has gone up from 14.8 to 15.8. Nt gp says as t4 rising I don't need thyroxine. My tsh has gone up in just 7 weeks.

I'm worried why my tsh is rising and ft4 is too. Surely it should be going down. I did post last week with my new results but didn't get many replies.

Thank you.

Pastille profile image
Pastille in reply to

I wish I could help more but I am just learning myself. If it wasn't for this site I'd still be on 50mg levo without a clue !! I'm sure you'll get some help now that you've posted again. Good luck

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