Thyroid UK

New here (only my second post ... undiagnosed...recent test results ...advice needed please

Hi everyone , Can anyone help me with new blood test results please ...

I received the letter this morning a copy of it has also been sent to my doctor

Endo still saying that Me and my thyroid are fine and that he feels the time has come to try a different approach to help with my symptoms so he suggests that I look into getting counselling to discuss strategies to help with my symptoms of anxiety ,poor sleep ,agitation ,weight gain ,extreme tiredness etc

In other words he thinks I'm just depressed 😡

He has also stated he's discharging me !!!

Would like to know what others feel I should do next 😕

My latest results where taken 7 days after the last ones

Tsh 0.33 ... mU/L (0.4 - 4.9)

T4 9.2 ... (9.0- 19.0 pmol/L

T3 4.3 ...( 2.6-5.7 pmol/L

Any help in where to turn next would be appreciated please Xx

I've copied my last post underneath which explains my back ground in more detail if that helps

17 Replies
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Hi everyone

I've been suffering with symptoms for years and seem to have had most tests going but I'm still hitting a brick wall when it comes to diagnosis...

Mri - empty sella

Thyroid ultra sound - enlarged thyroid

24 hour urine free cortisol -67

Synacthen test - start 205 rising to 550 after 30 mins

Monocytes count -0.62 10*9/L - 0.20-0.60 10*9/L

Tsh 4.3 (Feb 17) 0.5 (July 17) (range 0.4-4.9)

T3 4.9 (2.6 -5.7)

T4 10.9 (9.0-19.0)

Fibromyalgia

Psoriasis

Also gone deaf in one ear with no explanation found

Palpitations

Swollen thyroid

Heavy periods/shorter cycle

Constantly head ache

There are a lot more but can't think of top of head ..

Come out of appointment wondering if I'm barking up the wrong tree , so I'd be keen to know what you honestly think.

Doctor basically saying I could have anxiety/depression 🙁😡

I also smoke and drink red bull all day to give me energy & keep me awake , so was wondering if this could alter the test results.

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Sadly Smoking and thyroid simply do not go together and drinking red bull all day is crazy

Psoriasis is very very often result if gluten intolerance or even full blown coeliac

So totally changing your entire diet is the very first action to take

I suspect you have low levels of

Ferritin

Folate

B12

Vit d3

And they in turn add to your problems

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Hi reallyfedup 123

Thanks I'll look into those tests ..

I agree that smoking and energy drinks aren't helping and it is something that I need to address but I have no energy ect as it is even with the stimulants so it's a little scary esp while trying to hold down a full time job ,

I was wondering if anyone knew if the caffeine ect would be raising my levels more than they would be off them ...

if my Endo still won't listen my next step was to stop them plus my meds as you to suggested and then see what my results are , I think I may get a clearer result

xx

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Taking stimulants as you have been causes adrenal stress and makes matters worse ..you need mega doses of vitamin C in split doses to restore adrenal balance absolutely no smoking and a really good fresh fruit veg and fresh meat and fish no sugar or fast foods or bread gluten etc it will not be a quuck fix but you simply have to face the fact that you have drained every resource in your body to the point of adrenal collapse and only a total change of lifestyle will restore matters

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Hi reallyfedup123 as much as I appreciate your opinion, I'd like to add that I have only been drinking energy drinks this past year so it wasn't/ isn't the reason for my symptoms and in my opinion "I" definitely haven't "drained every resource in my body"at all , I feel that that was very judgemental to assume that that is what started my thyroid diagnosis battle

I've actually been fighting for answers for well over 5 +years , I'm also a qualified chef so I'm well aware of the need for eating a healthy diet to which I already do have ...

The way I see it ..everyone has a vice in life mine might not be everyone else's cup of tea but I'm sure others aren't mine ,but who am I to say that's what's caused there symptoms !

so as I've said above ,my question was would the stimulants and smoking change my blood results,

I was also asking if a Tsh of 0.33 and a t4 of 9.2

Would be low enough to warrant actually being taken seriously for a change , even though I do see all criticism as good criticism, it seems my actual blood results and question have been over looked on this post because I smoke and drink energy drinks (3 max a day)

I was looking for answers to my question but feel that obviously this isn't the place

xx

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A low TSH and a very low T4 and no doubt low t3 too screams Central Hypothyroid or maybe tertiary hypothyroid

They are different to the normal primary hypothyroid

And far too many doctors never ever think about the possibility of Central Hypothyroid which is where the pituarity is faulty ...have you had severe blood loss or banged your head at some point

Go back to your doctors and say that you were forced to do your own research on NHS choices website and the very very strong suggestion of Central or Tertiary hypothyroid has been made because you have a low TSH and very bottom of the range T4

All 5 of the hypothyroids in my family are genetically Central Hypothyroid hence why i know about it

Despite being a chef and eating a good diet i believe you will find that

Ferritin

Folate

B12

Vit d3

Are also way too low

I guess your working long hours in a stressful environment so yes your adrenals will indeed have taken a huge strain and the hidden hypothyroid will have piled on the stress too

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Rach155 - why another test just 7 days after the previous one?

The February and July TSH results are vastly different - were they both done at the same time of day and fasting?

Have you had thyroid antibodies tested?

Low FT4 with a non-elevated TSH can be central hypothyroidism where the fault is with the pituitary and it doesn't release enough of the thyroid-stimulating hormone (TSH) that prompts the thyroid to manufacture T4 - symptoms would be similar to primary hypothyroidism where the fault is with the thyroid. Or there's tertiary hypothyroidism where the fault lies with the hypothalamus. Has your endo looked into this? If he's a diabetes specialist, which most of them are, he possibly wont know enough about hypothyroidism to consider this.

I imagine that smoking and drinking Red Bull all day isn't helping at all and you'd probably be better off without either.

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Hi seasidesusie

Thank you for your reply ,

Re my blood test , i can't remember the time of day on my Feb blood test but I know it wasn't fasting , my July test was morning but I had had my meds and energy drink 😳

My latest test was lunch time after my endo appointment I hadn't eaten but again had painkillers mess ect

The test are only 7 days apart as I'd gone to gp regarding heavy periods with short cycle and she did thyroid test , I had my endo appointment a week later and asked for the tests to be done again because the Endo isn't listening as my Tsh is "normal"

I hadn't realised that my endo was a diabetes specialist doctor , I didn't know it made a difference but I've checked my letters and he is ,so what would you suggest I do next should I ask for a new Endo do my results warrant that , all my letter says is that everything is ok and that he's discharging me 🙁

I've had my anti bodies tested before by my ENT doc when he was trying to work out why I had loss of hearing but not recently and wasn't given the results

I do agree with the red bull and smoking ,I know they are doing me no favours and my next option is to cut them out , My thinking was that because they are stimulants that they might be making my levels higher than they would be but I'm not sure , but suppose it's a incentive to help break the habit Xx

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Rach155 First thoughts - stimulants have downsides. We all know the downsides of smoking, google for Red Bull dangers and that should give you the incentive to give up immediately!!!

:)

OK - so thyroid testing. TSH is highest early morning and it lowers during the day. It also lowers after eating. So always advised here is to have thyroid tests done at the same time, every time, with the same conditions then they can be compared accurately. That's hard when they're done at a hospital appointment I know, but if it's possible to get them done a few days before through your GP that would be good.

When looking for an increase in dose or to avoid a reduction, we need TSH to be as high as possible so early morning blood draw and an overnight fast are advised. It's also advised to leave off Levo for 24 hours, take it after the blood draw, if you take it on the morning of the blood draw you could very well be testing when T4 is peaking and your FT4 would show high in range, even over range.

Most endos are diabetes specialists, I think they find it more interesting than thyroid! There are very few actual thyroid specialists. The diabetes specialists don't tend to know very much about thyroid so rather than listen to the patient and find out how everything works, they stick to the guidelines of dosing by TSH only - if TSH is in range everything is fine and dandy, job done! If the patient isn't well then it can't be the thyroid can it, 'cos TSH is in range!

If you email louise.roberts@thyroiduk.org.uk she has a list of thyroid friendly endos. You could see who is available in your area on that list and ask for feedback from members (replies will have to be by PM).

It's important to know if thyroid antibodies are positive (over range). It wont change the treatment but it would confirm autoimmune thyroid disease aka Hashimoto's, which is where antibodies attack and gradually destroy the thyroid. Hashi's explains why some hypo patients have fluctuating symptoms and results, it's when the antibodies attack. So if you know you have Hashi's you can try and reduce the antibodies, being gluten free and supplementing with selenium can help with this. So try and get your antibody test results. Ideally you will have had both types tested - Thyroid Peroxidase (TPO) and Thyroglobulin (TG). Sometimes you can be negative for one but positive for the other, so it's important to test both.

Did you have vitamins and minerals tested - Vit D, B12, Folate, Ferritin? These are important as the levels need to be optimal (not just in range) for thyroid hormone to work. If you've had them done, please post the results. If not you could ask for them.

If you can't get those tests, nor both antibodies tested, you can do them with a home fingerprick test which lots of us here do.

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Good luck @Rach155 ! You can do it 😊

I have made so many changes since I joined this site on July 17 of this year. Just make the changes slowly if you have to. I know just what you mean about wanting to heal your self, but at the same time feeling that you have to get through the day anyway that you can.

Personally I quit smoking cigarettes at age 35 after my best friend died of cancer. I will admit it was three weeks of hell, but then it was over- and I never looked back. It is probably the single best thing I have ever done for myself in my life😎

Hang in there, and don't give up!

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Hi The_will_of_Jill

Thank you for the support 😊👍

I've spent the last 5+ years trying to get answers and keep hitting a brick wall , so after my last Endo appointment being told basically it's all in my head I decided my only option is to prove a point and stop the energy drink, smoking and eventually if need be cut my meds down (for fibromyalgia) on the reasons that it will eventually ,either show my true blood readings or it may i in fact make me "normal"

either way I reckon I'm on a win win , but with the incentive/stubbornness of proving my Endo wrong, I think that alone will help me a lot 😃 Xx

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Hello again, I honestly don't know whether caffeine and cigarettes affect the outcome of the blood results as far as making them higher. But as someone else said it's important to Fast overnight and next day until after blood is taken. Get blood test early in the morning (8am or as close to as possible) and don't take medication before hand-but I'm guessing you're not on medication. Yet.

Get those tests for Hashimotos. That was quite a difference in seven days.. so maybe there is an ebb and flow thing going on which would be the case with auto immune disease.

I'm still pretty new here, and still trying to learn all this information, while suffering fatigue and constant brain fog. I'm just trying to be supportive. I hope you can find a better doctor- soon!

I know what it's like to be dismissed and have my doctors and even family thinking that it's all in my head.

Are you in UK? Will it be easy enough to find a different doctor? My treatment is through my gynecologist.

If I weren't getting help from my family to see this private Doctor (who is also my stepmother's doctor) and I could afford to pay for whichever doctor I chose, I would get a thyroid specialist.

I am awaiting the arrival of two books to be delivered. Stop the thyroid madness (second edition) books one and two. There are other ones listed here on the home page of Thyroid UK that I want also.

My experience with most doctors has been that they arrogantly assume that whatever they learned in med school (no matter how long ago it was) is all the info that matters. It is very frustrating and I am pretty angry about the way I've been treated.

I was put on medication for depression and anxiety a long time ago just after a month from joining this site I am on the verge of firing my shrink.I'm slowly weaning off his mind altering drugs.

Don't let them push you around xx

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Smoking lowers the TSH which can hide the fact that you could be undiagnosed hypothyroid- it says on the Stop the Thyroid madness site. Link above*

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Your endo needs shooting if they said those results are normal

Low tsh and low t4 screams Central or tertiary hypothyroid

The thing that messed with the results was taking meds before the test ,eating and time of day

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Hi 😊

Yes I'm in the uk 👍

Re the bloods results changing with stimulants, im questioning it as I had a 24 hour urine free cortisol test and on looking up the results on the net it says that caffeine ect can increase your results , mine where on low side so I had the synacthen test after which came back good .. so got to thinking may be that's altering all my test results 🤔 I will keep researching and in the mean time try to cut them out 😊

Thanks for you reply and support though 😊 I know how you feel i to am new to all this to , I started researching properly only recently when I was getting no real answers so decided forarmed is forwarned , I'm determined to get to the bottom of my symptoms and hopefully then start to feel better , I feel I've already wasted so much time being ill 🙁

I've had a lot of information from this post to look into so that will be my next task , I'll get the blood tests that have been recommended, I'm more than willing to pay for the tests I need but will see what gp has to say about my results first and ask if she will do them.

I to was put on anti depressants a few years back , I personally think that for me it was in fact just another long list of symptoms of my messed up thyroid Not actually depression, but from what I've read it's very common ,

on the other side I suppose feeling ILL constantly could eventually bring on depression in it's self , it's all just a vicious circle .

I'm due to see a gynaecologist soon, so you never know they may listen more than my Endo doctor.

I hope you get some answers soon , I think it's just a case of finding the right doctor that will actually listen , its terrible the way some treat people , you sound like you've had a bad time of it as well .

it's lovely to here that you have the support of your family that helps a lot 😊

I will take a look at the books you mentioned thank you , keep going and have faith that one day we will get the answers we're searching for xx

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First thing is to get full Thyroid and vitamin tests. Very important to check thyroid antibodies.

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw.

Smoking can suppress thyroid test results

verywell.com/cigarette-smok...

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