New to this!: Hey guys. Just introducing myself... - Thyroid UK

Thyroid UK

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Claireydee profile image
29 Replies

Hey guys.

Just introducing myself. :)

Claire, 30 from Fife.

I've had issues for as long as I can remember and had always wanted a test done. (Took 9 years!) I had been taken iodine tablets which helped my hair and eyebrows grow and improve my moods but eventually my anxiety was getting worse. So when I did eventually get a test after pestering the Dr, it came back 'normal' But right at the top end of normal just off what they would 'consider' abnormal. I was sent for an ultrasound which showed a nodule and thought finally I'm going to get to the bottom of this and start to feel normal again. Of course that didn't happen.

I kept going back and they done an antibody test (for hashimotos) which also came back normal! I've stopped the iodine tablets and have noticed very quickly the changes again and deliberately left my eyebrows for 2 and a bit months to show them how bad it is. I'm getting another test on the 19th so I'm hoping that it does show as underactive so I can begin to feel normal. It's ruining my life! I struggle with anxiety on a daily basis and it's even starting to affect my work (in a call centre) I'm at my wits end. :( Thought I would join this forum for some tips and even some views from yourselves on what your symptoms are how long it took for a diagnosis etc.

Thanks :)

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Claireydee profile image
Claireydee
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shaws profile image
shawsAdministrator

Welcome to our forum Claire (from Fife).

When you get your blood tests it always has to be the very earliest appointment, fasting (you can drink water) and when diagnosed you allow a 24 hour gap between the last dose and test and take afterwards.

Ask GP this time for a Full Thyroid Function Test (probably wont but you can get those privately (home pin-prick test) for those he or lab wont do:-

TSH, T4, T3, Free T4, Free T3, B12, Vit D, iron, ferritin and folate. You can tell him you've been advised to make sure everything is optimum as deficiencies can also cause symptoms.

Always get a print-out from the surgery of the results with the ranges. Ranges are important as labs differ in their machines.

Early morning the TSH is at its highest and drops throughout the day, which may mean you may not be diagnosed if it is a late afternoon.

There is a case before the Scottish Parliament regarding changing the rules f or treating patients, which you may be interested in. If you Search for Lorraine Cleaver you can read what is happening so far.

When you get prescribed you take levothyroxine on an empty stomach with one full glass of water and wait an our before eating. Food interferes with the uptake of levo. Any supplements take 4 hours apart.

Claireydee profile image
Claireydee in reply to shaws

Thank you so much for the advice. I was looking at the private ones the other day so I may go for it and get one, it's a total pain in the bum trying to get answers.

The range I'm not entirely sure all the Dr said was it was the normal range but 'just' at the very high end of the range, which is frustrating cause they know all my symptoms and I even said the Iodine tablets did help for a little while but I didn't want to continue without proper management cause I may have been making it worse (anxiety)

It was that bad at one point I thought I was bi-polar, thats when I found out about underactive thyroid and looked into getting an answer, also looked at mercury poisoning too which is interesting and maybe another possibility if not the thyroid.

I'll take it all on board and thanks for the tip about my test for fasting it's at 11.30 so should be ok as I'm not a breakfast fan haha 😊

shaws profile image
shawsAdministrator in reply to Claireydee

11.30 a.m. is a bit late as TSH is highest around 4 a.m. to 6 a.m. Obviously we cannot have a test at that time so it has to be the very earliest at the surgery - maybe 8.30 to 9 a.m. The reason for the earliest is that the TSH begins to drop throughout the day and may mean the difference between being diagnosed or not. I'd be apt to change my appointment but, of course, it is your decision. This is an excerpt from a previous post:-

The take-home message is:

If you want your TSH test to get you diagnosed hypothyroid, get the blood drawn in the morning, as early as possible.

healthunlocked.com/thyroidu...

Claireydee profile image
Claireydee in reply to shaws

That's fab! What an interesting read. I think I'm going to give them a phone and change the appointment.

So glad I signed up great tips that I bet the Drs are well aware of

😊x

shaws profile image
shawsAdministrator in reply to Claireydee

I doubt doctors are aware that TSH has a 24 hour variable and so many tell their patients their test is 'normal' as it is somewhere in the range when the aim for us is a TSH of 1 or lower. :)

Claireydee profile image
Claireydee in reply to shaws

I think they're quite ignorant when it comes to an important gland in the body which can totally change you 😢

Thanks again you have been brilliant and I've learnt a lot 😊❤

Claireydee profile image
Claireydee in reply to shaws

I've changed the appointment, but the earliest is 9.50 do you think that would be ok as they reserve the morning for fasting patients. 👎

shaws profile image
shawsAdministrator in reply to Claireydee

We will cross fingers and you will have tests every six weeks, so make your appointments well in advance. We do advise fasting for this test but doctors are unaware of this. If we eat TSH drops. I find it amazing that medical professionals are unaware that eating before a blood test for thyroid can suppress the TSH and GPs will therefor reduce the patients' dose.

Excerpt:

TSH was suppressed in all subjects after food irrespective of the fasting levels. Free T4 values did not change significantly. This resulted in reclassification of 15 out of 20 (75%) subjects as subclinical hypothyroidism (SCH) based on fasting values whose TSH values were otherwise within range in the postprandial sample. This may have an impact on the diagnosis and management of hypothyroidism especially where even marginal changes in TSH may be clinically relevant as in SCH and in pregnancy.

ncbi.nlm.nih.gov/pmc/articl...

Claireydee profile image
Claireydee in reply to shaws

Thank you 😊 I'll keep you posted.

teenarocks profile image
teenarocks in reply to Claireydee

Claire, I'm so sorry you have not been receiving proper treatment. I also went through years of thinking I was bi-polar due to the ups and downs of Hashimoto's and endured many years of treatment on anti-depressants when what I needed was T3. I hope you will get proper testing and treatment in a whole lot less time than it took me. This forum will lead you in the right direction. All the best to you.

Claireydee profile image
Claireydee in reply to teenarocks

Thanks Teenarocks 😊 Its horrible isnt it, when you feel that way. So glad you're now getting treated. Hopefully I get some answers.

😊x

Claireydee profile image
Claireydee in reply to teenarocks

Teena do you get t3 on prescription or have you got it online? I'm not too sure about going down the online route but if I have to would be great to know if anybody else does.

X

teenarocks profile image
teenarocks in reply to Claireydee

I'm in US. Even here it wasn't easy to get a doc to prescribe. But I have an endo now who will give it to me. My sympathy is with all who can't obtain it I think it's just awful.

mauschen profile image
mauschen

Welcome Claire, sorry to hear you're not feeling so good. Your symptoms certainly sound as though they could be thyroid related and even with "normal" test results that doesn't necessarily mean that you do not have thyroid issues. There is a condition called latent hypothyroidism which I had before my blood results demonstrated hypothyroidism. It simply means that doctors can tell when you are heading in that direction.

Of course many other deficiencies can result in a similar symptom profile which is why it's best to get tested for the things Shaws mentioned earlier. shaws has given you good advice for this stage in your investigation. If you can invest in the private blood test you might save yourself time and anxiety. You will get the results quickly and if you look up results in the search function you will see many posts explaining where each value should be in the range. Some doctors don't like to be asked to evaluate blood results they did not initiate however, if something is not within the normal range , most would not ignore that.

For many of us, medical treatment is not the sole remedy. We must alter our schedule to include times to take tablets without food and without other medication, which is a pain when you take several medications. We must watch our diet as some foods can make us feel unwell or interact with medications so they must be avoided. Vigilance is crucial because a virus or some other illness or stressful situation can knock us quickly out of sync. Thyroid disease is a terrible affliction that I wouldn't wish on anyone. I sincerely hope you do not have this illness and that you find an answer soon for your symptoms.

Anxiety is a crippling symptom whatever it's cause and for that symptom alone you need professional help. You are too young to be sick, please take shaws advice and get your blood tested so that you can begin the healing process.

Take care ( an dinnae worry)

M

Claireydee profile image
Claireydee in reply to mauschen

Hey M 😊

Thank you I'm going to look into the private test and keep all the information from you guys in regards to before the test and after for results. I didn't realise different labs had different ranges so that's confusing haha.

I'm just fed up of it now as it seems obvious to me and I even questioned different numbers for different people and symptoms.

I was also looking at mercury poisoning also out of curiosity which was a great read as it sort of matches the tyroid symptoms. I feel the Drs just focus on one thing and not the whole 😢 They gave me sertraline for my anxiety which was awful! Didn't work and gave me terrible side affects and of course didn't help any of my other symptoms the list just goes on.

And it's so hard not to worry haha (liked that you used the scots🙈) I have a 6 year old and on my good days it's still hard I seem to lose my patience very quickly and it's not fair on him he's a typical 6 year old and the guilt is awful.

Hopefully get answers soon.

Thanks 😊

mauschen profile image
mauschen in reply to Claireydee

Try asking your GP first, maybe you'll have luck and get a full thyroid profile on the NHS?

Claireydee profile image
Claireydee in reply to mauschen

I think it will just be the common thyroid test to be honest. I had to practically beg the last time to have an antibody test, I don't knkw why they just don't give you a full one as surely the more appointments and going back and fourth is draining the nhs?

I must think differently haha.

I'll try my best though and keep you all posted 😊

shaws profile image
shawsAdministrator in reply to Claireydee

Tick off the ones you have and if sufficient show your GP.

We used to be treated due to clinical symptoms only before the blood tests were introduced along with levothyroxine.

thyroiduk.org.uk/tuk/about_...

Claireydee profile image
Claireydee in reply to shaws

I've actually filled in a similar one to take to the drs and thats when they tested for Hashimotos with the antibodies but again she said it's normal and just said I have anxiety 👎 I'll try it with my new dr to see what she says .

X

shaws profile image
shawsAdministrator in reply to Claireydee

Get a copy of your results from the surgery, with the ranges and post for comments.

The test should be at the very earliest, fasting (you can drink water) and if taking thyroid hormone replacement you allow a gap of 24 hours between the last dose and test and take afterwards.

Claireydee profile image
Claireydee

Thats a great tip thank you! My Dr never said I'm afraid, she didn't even give me a number just that it was in the 'normal' range and 'just' as it's on the very high end of normal she even said borderline! thats all I know I'm afraid 👎 I'll get them this time though and I'll ask if they have my previous results also for comparison 😊

margaretheron2 profile image
margaretheron2

Hi claireydee,welcome to the site ,you will get great information and Learn a lot from this site ,just as I have .I have used the information to help myself by taking on board what others here have suggested and I have greatly improved my health .I was so sick of getting no where with doctors and sick of feeling so I'll and sick of the weight Pilling on that I took control of my own health by researching things that was put up on this site and I have come up with something that is working for me,

Claireydee profile image
Claireydee in reply to margaretheron2

Hi Margaret. Aw thats great to know! I've learnt so much in a day haha for the first time in a long time I'm actually feeling positive about the future 😊 here's hoping I get somewhere with my new Dr.

If not I can always try and get more advvice of what to do next from this forum. Everyones been soo nice.

❤x

Heloise profile image
Heloise

Such a sweet picture! It must have been a good moment in this rather disastrous condition. You've received a lot of good advice but if Scotland uses the NHS (I'm in the U.S.) you have an uphill battle. I hate to add more information for you to assimilate but you need to know that your adrenal glands are very involved, may even be totally involved with your thyroid condition. There are supplements or vitamins which you should probably be taking now but I think you would get a good understanding of their relationship if you have time to watch this video.

youtube.com/watch?v=T_Re4ja...

Claireydee profile image
Claireydee in reply to Heloise

Wow thanks! I never knew that can be involved I'll certainly have a look at that video after my dinner 😊

Yeah the pic was with my wee one a year ago now and on one of my good days, not had a day like that in a while though 👎

It is going to be a hard battle but I'll keep going and if I have to get a private home test, I will beat it and get happy again haha.

Thanks again ❤x

ChrisCh profile image
ChrisCh

Hi, how much iodine were you taking and how long was it before you saw your improvements like the eyebrows etc?

This lady is very interesting and may help you

kellybroganmd.com/calm-body...

Good luck

Claireydee profile image
Claireydee in reply to ChrisCh

Hey, I took 4 of the sea kelp tablets its a supplement. I then put it down to 3 as I was quite hyper. I took them for a while before I noticed a difference (can't remember how long I'm afraid) it took a while for the brows, hair and nails to get to a sort of normality but the anxiety got worse so as it wasn't getting monitored I cut myself down and came off them all together.

I'll have a little look thank you 😊❤

Mac64 profile image
Mac64

Hi Claireydee

I feel for you, it's a long road with thyroid issues. I am hopefully close to the end of my journey and awaiting surgery to remove it altogether! There is so much advice out there but GPs sadly are not experts unless they've studied that particular area. They go purely on blood results and never tell you when to have tests or whether they should be fasting or early morning or otherwise!! It's a grey area indeed. If there's any way you can get an appointment with an endocrinologist you might be in luck as they will discuss full thyroid results and ways forward. Everyone is different and no two people have exactly the same experience due to other underlying illnesses that mask thyroid issues. I'm convinced that diet and stress can play a huge part (the lady who mentioned adrenal glands is correct there) and it's worth taking a look at that. If I can think of anything else I'll post it but I wish you luck. I'm in Fife too and I think we are as slow as any other NHS region in getting things done! Keep your chin up, you're getting there. 👍🏼

Claireydee profile image
Claireydee in reply to Mac64

Thank you Mac. I know I do think they're ignorant and I just get so annoyed when they focus on one thing! It's been years since I was younger I've had the symptoms but it's got a lot worse since I had the wee man. I feel I've got all these symptoms and I even cried when they found a nodule on my left side cause I was hoping they'd listen to me and put 2 and 2 together but still in the same situation 👎 How do you get an appointment with the endo? Do you get refered from your Dr after so long?

I do hope so I'm not going to rest till I have an answer with whats goinf on and if it's not my thyroid what actually is it 🙈

❤x

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