How soon is too soon to re test?: I am waiting to... - Thyroid UK

Thyroid UK

143,930 members•169,412 posts

How soon is too soon to re test?

•

I am waiting to re test my thyroid as I have been feeling ill daily with anxiety, fatigue, feeling ill with fatigue and weakness after any exercise or even housework, feeling weak in my legs, brain fog, the floor feeling like a trampoline and now feeling very low. After 9 months of tiredness and 3 months of all the other symptoms I feel awful.

I had an NHS test in December, wrong time of day, Prior to that i had a test in the summer and my TSH was 5.35 (0.35-5.50) and T4 11 (7-17). My GP agreed to re test in 6 months but of course I was ill at home so the test was done by my GP later in the day.

I went private and did the finger prick test with Blue Horizon on January 18th this year. My TSH was 6.54 (0.27-4.20) and FT4 was 14.2 (12-22). Their doctor commented saying I could be subclinical or other factors could be raising the TSH, and to re test in 3 months or sooner if symptoms develop.

I have symptoms daily and have for 3 months and I am struggling. How soon is too soon to re test? I don't want to waste my money as the tests are expensive. My GP has agreed to test me at the end of March but right now i am so ill with fatigue and as a result anxious so I find appointments cause me horrible panic attacks, it is something I will work on when I feel better but for now I dont want to put myself through any more anxiety so my GP does blood at my house, I feel a burden but I am where I am. Which means he takes the blood late in the day so it's no use. Are the Blue Horizon finger prick tests reliable enough?

It's only been a month so I doubt it's ok to re test just yet.

Read more about...

25 Replies

•

9 years ago

Jingyd,

Your doctor is kind to come to your house but it is important to have bloods drawn first thing in the morning because TSH is at its highest and you have more chance of a hypothyroid diagnose.

Above range TSH and low T4 indicate a thyroid problem and could be accountable for your symptoms.

Inconclusive tests are usually repeated by GP's after 3 months but as you have had two high TSH results, I would push your GP for another sooner than the end of march.

Panic attacks can be a sign of low thyroid hormone & high/low cortisol levels.

Blue Horizon lab tests are reliable but may not be recognised by your doctor.

Flower

……………………………………………………………………………………………………………………........................

Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

…………………………………………………………………………………………………………………….........................

• in reply to9 years ago

Thank you.

Yes I realise I have to go first thing buthat the moment I can't unfortunately.

My gp has recognised the blue horizon results which is good and taken them seriously. I'm just not sure how soon I can re test without wasting my money.

HLAB359 years ago

Sounds familiar. Your doctor sounds kind even if at this stage they are not sure what is wrong.

Do you have, or have had, any known autoimmune problems e.g. allergies, history of sore throats and swollen glands, endometriosis (heavy painful periods), rheumatoid arthritis, for example? It'll help them to know if there is a bit of background history going on (even a traumatic event can affect you physically). It's sometimes better to put everything in a letter, or email to your GP as then they'll have time to digest the information before they see you.

I hope that a diagnosis comes as soon as possible. And please, please, don't do yourself down by thinking you are a burden. We all need help at times in our lives. This is your time to ask for help and that is absolutely fine x

• in reply toHLAB359 years ago

Thank you

I wrote to my GP twice explaining how this all impacts my life and how ill i feel daily. I have outlined stress i have been under with my son, explained my anxiety never manifests like this so i disagree that the physical feelings aren't from a real illness. He said he cannot put me on a trial whilst my T4 is normal and TSH is the only one that is high. So he said re test March and go from there.

SilverAvocado9 years ago

I think if I were you I'd make a deal with myself to start self medicating if the March tests don't come to anything. I'd even be tempted to do so before that. It sounds like your GP is making the right noises to sound nice, but is happy to leave you hanging around for months with above range TSH and all the symptoms to match. This just seems sadistic to me.

SilverAvocado• in reply toSilverAvocado9 years ago

Another way of putting it is, to get NHS treatment often they put up a bunch of hoops you have to jump through 'try this ineffective treatment for x months, then come back', type of thing.

It sounds like you're getting a lot of anxiety, which is very much a symptom of your condition, but is exacerbated by an uncertain future, and the ongoing battle with doctors. In your position is be tempted to say f*** the hoop jumping, I want to start getting better on my own terms.

I've been self medicating now for 3 months. One of the best bits is that I don't have my monthly altercation with the pharmacy to get my prescription.

• in reply toSilverAvocado9 years ago

Thank you. Glad you're feeling better.

I am very worried about self medicating because i know you have to know what you're doing to do that and I have no idea haha! I wouldn't know how to self medicate or what dose.

I will do the March test and if that shows changes I will demand a trial. I have tried to accept this is anxiety or depression but nah it isn't, this is very physical and yes the uncertainty of what is wrong with me is freaking me out. It gives me bad anxiety every day not knowing what will happen to me next. Nothing like my usual anxiety I suffer from. I never have physical feelings like this.

SilverAvocado• in reply to9 years ago

I had no idea, either, and no energy to research. So I just kept reading this forum every day until things started to sink in. I have seen 2 private doctors at different points because I wanted the extra reassurance. But one of them was just as happy as my NHS doctor to keep me hanging around for months, this time charging me through the nose for the privelege!

Finally got to the point of realising none of them know much of anything, and with over 2 years of blood tests behind me, so I went for it. I have still only done a fraction of the reading I'd like to do.

Flower39 years ago

If your next test is the same, a high TSH (maybe higher than before) and "normal" FT4 you should ask for a trial. Your doc saying this isn't possible is simply not true. It is called a trial because there is a reason to start with levothyroxine and you want to know if this will help your symptoms go away.

It is a good sign your doctor wants to retest a couple of times with weeks in between because you don't want to start treatment with just one abmormal test result (sometimes it corrects itself over time).

Please keep fighting and don't agree with waiting till your FT4 is finally too low, it doesn't go that quick and it is not okay to keep feeling so unwell.

Good luck!!!

• in reply toFlower39 years ago

Thank you..I agree.

My tsh has been 4.9, 5.35 and 6.54 ( different range for the last one) and recent t4 is 14.2 (12-22) so he's saging I am subclinical but if he treated me when my t4 is ok then I could turn hyperthyroid so as the t4 is working he says putting thyroxine could send me the other way if my body is making thyroxine. It confused me but I guess he knows what he means lol!

Flower3• in reply to9 years ago

This is not correct. The lab has ranges but no one can tell which level is optimal for you. This is individual, your optimal FT4 level is different than mine.

The TSH gets high when your body needs more thyroid hormone. If the TSH is always high it means your thyroid fails to give more thyroid hormone. So yes, your FT4 is not too low (yet) but it is too low for your body (says the high TSH).

Adding just a bit of T4 (levothyroxine) can help you. This will lower the TSH and make your FT4 go higher.

Listen to your body, it will tell you what to do.

• in reply toFlower39 years ago

Brilliant explanation. Finally I understand what tsh and t4 do.

So there isn't anything else that can raise tsh? As the blue horizon doctor that commented on my results said I'm either subclinical or another factor is raising my tsh but he didn't indicate what it could be.

Thank you for all your help.

Flower3• in reply to9 years ago

Not that I know of..It is true that sometimes someone can have a temporarily raised TSH. No doctor will immediately give levo for this (not if it is slightly raised), they want to wait around three months, test again and go on like this. If the test keeps showing a raised TSH which doesn't correct itself after x months than you can get a trial.

Subclinical is a stupid term if you ask me. I was "subclinical" for 7 years. TSH was high and getting higher and higher over time. FT4 within range so just like they say to you, it is "normal", no need to treat. My FT4 was getting lower though. Finally after 7 years I got a trial of levo and more tests which showed I had Hashimotos disease.

This is why I get a allergic reaction (not literally haha) when I hear stories like yours.

Makes me think, if your retest is again not good then you could ask for a antibodies test. Chance of 99% they say no because you've got a "good" FT4 but you could try. Please make sure you get both; Anti-TPO and Anti-TG.

• in reply toFlower39 years ago

Thanks Flower.

I had a full panel done with blue horizon in January and antibodies were normal. Tsh was the only thing raised at 6.54. Their range is 0.27-4.20. T3 was normal and my total t4.

My test prior to this was an NHS one in December but it was taken at 1pm. Tsh only 3 and t4 10.2 so my gp said see all is fine. My results in the summer on the NHS showed my tsh was 5.35 range is 0.35-5.5. So I went private and he saw in black and white it was high and I agreed I was subclinical.

7 years?!! Wow. Did you have symptoms during that time? How high did your tsh get before they treated you?

Thanks for all your help.

Julie

Flower3• in reply to9 years ago

No problem at all, glad if I can help. Ok, so that's a good thing you don't have antibodies, this means you don't have a autoimmune disease (Hashimotos). Do you eat enough iodine? People who are celiac and eat glutenfree for example can have a iodine deficiency. Iodine is very important for the thyroid.

Yes I did, I was very ill and couldn't do much. My TSH was around 9 and FT4 borderline on the lowest part of the range. Because I had all my results I could proof my TSH got higher over time and FT4 lower. I got a trial and because my levels were going up and down from hyper to hypo I got a referral to a endo. There they tested my antibodies and find out I got Hashimotos disease. No one ever spoke about "subclinical" ever again. Also because the treatment made a difference in the symptoms, I knew it was my thyroid but docs need a confirmation somehow.

• in reply toFlower39 years ago

Thank you.

I take a supplement daily that has 38ug of iodine in it. I've only been gluten free for 2 months to see if it helped my ibs which it has. Also I was having a nasty ball feeling in my throat often like I'd swallowed a football, as soon as i went gluten free that stopped.

Here in the UK they wait for you to hit a tsh of 10.

Every day I feel weak, fatigue, heavy eyes like I've not slept, I feel ill some days where I have to rest in bed as I feel so tired and woozy and then 3 months ago I stated feeling the ground bouncing as i walked. Which then caused me intense anxiety. I now have had a horrible flare up in my anxiety and agoraphobia again. Some days I even get anxious walking around my house as I feel so weak and the ground bounces. Today is onE of those days where I feel weak and woozy and need to rest. I've just had 3 better days of much less fatigue so I hoped I'd improved a little 😯I always get anxious on my bad days that I will collapse and end up in hospital and right now that would terrify me being agoraphobic. Urgh horrible way to feel.

Listening to my body now and resting for the day.

I tested 18th Jan so I am planning ok a re test 18th March. Hopefully 2 month gap will be ok and not too soon.

Julie

Flower3• in reply to9 years ago

I'm so sorry you feel so unwell. If the GF diet improves some of your symptoms I would definitely discuss this with your GP. Could be celiac.

2 months is long enough if you ask me, especially when you feel this way.

I hope you will find the answers you need and are looking for. When our bodies stop working properly this is frightening, especially when it is a big mystery why and what's causing it.

The best advice I have is to write all your symptoms down (and test results), read a lot and always listen to your body.

Good luck!!!

• in reply toFlower39 years ago

Thank you.

It is frightening for sure. It's horrible being left feeling so poorly, it's no wonder I have anxiety every day. My gp just said I was anxious and stressed as my son was recently very ill for 3 months with panic attacks in school due to bullies and the daily battle to get him to school was hell. It made me ill. So my gp thinks all that emotional stress tool it's toll on me but that's behind us now and he's well again. Yet I am here feeling fatigued and weak. I have the odd good day then a day worse than ever like today. I'm a mum to 3 children so it's really hard feeling so ill and useless every day and a gp just tells me I am.suffering from anxiety. I will have the re test in 2-3 weeks then demand a trial, I cannot carry on feeling this ill. I'm sure I will have a battle on my hands as my gp said as my t4 is fine he cant treat me incase I to hyper.

Flower3• in reply to9 years ago

It is horrible and I can assure you that when you know what the cause is it will give you relief and less stressed.

Of course people can feel unwell because there is too much stress in their lives. But this would mean all people with too much stress have a abnormal thyroid test result? Of course not.

Have you been tested for other things like vitamins and minerals? A deficiency in them can also cause symptoms and anxiety.

The best you can do is find some good information about the thyroid and print them out. When you have the appointment with your GP you take them with you. You have to know when he's telling you something that isn't correct. I know this is hard because you already feel so unwell and you have to 'fight' to get somewhere but it will be worth it. You have symptoms and you have multiple abnormal thyroid test results, if all the rest is checked and okay then there is enough reason for a trial (nothing to lose then).

Going hyper is really impossible with your results. You get hyper when the FT4 level is too high. If I take your last test results as a example; FT4 was 14.2 (12-22). If the FT4 goes over 22 you get hyper. Believe me, you can't go from 14 to 23 with a bit of lexothyroxine. You start slowly, let's say with 25mcg, this will make your TSH go down and FT4 up. It will go slowly so FT4 maybe gets 2-3 points higher (this is not hyper). It makes me mad when I read that your GP said that, I think he doesn't know how the thyroid works which a lot of GPs don't.

The issue also is that all the typical hypothyroid symptoms could also be from stress. Anxiety, exhaustion, headache, we can go on and on. Blood never lies, it tells us exactly how our body is functioning. A high TSH isn't from stress.

• in reply toFlower39 years ago

Thank you.

I agree on days like today when I feel awful it's scary and my anxiety is high. It's the unknown and fear of why I feel so bad.

I had my ferritin and b12 checked in the summer. My ferritin was 15 and b12 212. Had re test I'm December and ferritin after supplementing was 31 and b12 501.

Do you know if the actual results differ from lab to lab. This confuses me because I've been told on here that my result of tsh 6.54 and t4 of 14 on blue horizon will be different on an NHS test. I knew ranges differed but not actual results. That puzzles me.

Flower3• in reply to9 years ago

That's good that you started supplementing, are you still doing that? Vitamin D would also be on my list to get checked (often deficient due to lack of sun).

Yes, that is true. Every lab has its own ranges, that is confusing. This is why it is best to always get your blood checked as early as possible at the same lab. What they meant with saying a result of the NHS will be different is because of the ranges. But of course if you have a abnormal thyroid result it shouldn't matter where you get it tested, it just means the results (the numbers) are different because they have other ranges.

So if one lab says 0,5-4,5 for TSH and you have 6,0 and another lab says 0,6-5,5 and you have 7,0 it both gives a abnormal result, just different numbers.

If you would start treatment then it's best to get it checked at the same time and same lab so you can compare the results better.

• in reply toFlower39 years ago

Thank you.

Why do the results differ? I always just assumed it was just different labs have a different range of what the norm should be haha.

My tsh was 5.35 on nhs last August. Range there is 0.35-5.5. Then blue horizon 0.27-4.20. And tsh 6.54. So I am going to do blue horizon again this time as they are who I went with last time so can do a comparison.

I am supplementing still and taking d3. My gp didn't check it but I thought I'd probably be low as I have agoraphobia recently and stay home alot.

I'm just hoping 8 weeks between tests will not be too soon. The blue horizon doctor commented saying 3 months repeat or sooner if symptomatic. It's the finger prick test I did from home before 8am.

Thank you for all your advice.

Flower3• in reply to9 years ago

You're right, I thin I made it even more confusing with my example, sorry for that. I meant that you always need the ranges to interpret the results.

I think that's a good idea to get your next blood test at the same lab as your last one.

Very good that you supplement vitamin D, make sure you get enough (1000IU a day or more).

I hope it all will go well, your GP should understand you tested 4 weeks earlier (2 months instead of 3 in between) because you feel so unwell.

• in reply toFlower39 years ago

On a day like today it can't come soon enough. I'm hoping it is my thyroid making me feel do poorly. I feel terrible today. Every day I'm exhausted and weak but every so often I have a bad day where walking around I feel so ill and weak I just have to stay in bed. It's weird how I getc the odd worse day like this. It's not nice as I have awful high anxiety on days like this as I fear something awful is wrong with me or I will collapse and end up in hospital. Scares me.

Thank you for all your help today it's been much appreciated.

• in reply toFlower39 years ago

Forgot to say I've been tested for coeliac twice in the past and it was negative.