Feeling emotional and like no one believes me again

[MS1983]

Hi 

So i have been battling with the symptoms of Hypothyroidism for a long time now. I have told them i have a family history - my dad and his mum.  

I finally received the full blood tests of which have NEVER been done and my T4 level was at 11.5 reluctantly my doctor put me onto levothyroxine 25mg and said it will either make you feel alot better or wont help at all. She wanted to put me onto anti-depressants!! 

So after two weeks i felt like me again. I'm not a lazy person and this is what my body was making me feel like before i had no energy it was very difficult to carry out normal every day tasks without feeling exhausted and like something inside me was grinding to a halt. Thats the only way i can describe it. I'd been really struggling to lose weight (which i still am) and concentrating was a real effort. 

So im happy with my dosage until I start increasing my exercise alot this past week. I had my blood tests on wednesday last week. I felt fine on this day! My test results showd a T4 15 and TSH 2.56. From Sunday onwards i have felt really poorly again no energy everything i do is a struggle so ive arragne to work from home so i dont have my long drive into the office and called the doctor. 

The doctor said simply its not your thyroid as on wednesday it was fine. we will check if your anemic or diabetic or it just could be phycological. I know its not i nearly burst into tears when she said that it was a real battle to get this diagnosed in the first place and now they are back to not believing me again. 

Anyone else had this experience and also know if the blood tests are specific to the day they are taken? 

Thank you 

[Jose651]

Hi MS1983,

Have you had your B12 levels checked?

J

I have just realized that your new here. You are welcome.

😀

[MS1983 in reply to Jose651]

Hi Jose651

No what is that for?

M 

[Jose651 in reply to MS1983]

Vitamin B12, Folate, Ferittin and Vitamin D levels are extremely important  and should be at good levels to enable your thyroid hormone replacement to work efficiently.

You say you got a full blood test done. Have you got the results of these. 

When were they done MS1983?

J

[annie-7]

Hi MS1983 , sorry you're feeling so rotten, 25mcg is a very small starting dose, it is more usual to start with 50mcg. (Unless you are over 60) It is usual to increase meds by 25mcg every 6 weeks or so until levels are optimal.

It is best to have Thyroid blood tests as early in the morning as possible, having only water (no food or tea/coffee). Don't take your Levothyroxine the day before the blood test. (TSH is higher in the morning than afternoon)

It's a good idea to have your ferritin, vitamin D, B12 checked as these need to be optimal to help your body use the Levothyroxine.

Could you possibly add your blood test results with the ranges, it will make it easier for people to comment?

Have you seen our other site? thyroiduk.org.uk/tuk/testin...

If there is anything else, please just ask, it can be a very overwhelming condition.

[MS1983 in reply to annie-7]

Oh my word I wish the doctors would say this! i had breakfast took my thyroxine as normal in the morning an hour before breakfast. My oringal levels were T4 11.5 and TSH 2.94 last week they were T4 15 and TSH 2.56 

Ive got some blood tested ordered but need to pick up my slip to know exactly what they are! 

[annie-7 in reply to MS1983]

Doctors will say it doesn't matter, but they are only really interested in "treating by numbers" - that is the TSH!

If you can get your Free T3 and TPOAb (Thyroperoxidase antibodies) TgAb (Antithyroglobulin antibodies) checked, that would be useful.

I've given up trying to get the correct blood tests at GP surgery, I use Blue Horizon (fingerprick blood test) saves a lot of hassle!

bluehorizonmedicals.co.uk/

[MS1983 in reply to annie-7]

Thanks Annie-7. just such a nightmare isnt it but still feel i pay so much into the national health they should test for the correct things. Drives me mad that we would have to get our own tests done privately! 

[Clutter]

Welcome to the forum, MS1983.

The goal of Levothyroxine is to restore the patient to euthyroid status.  For most people this will be when TSH is 1.0 or lower with FT4 in the upper range.  Read Treatment Options in thyroiduk.org.uk/tuk/about_...  Email [e-mail] if you would like a copy of the Pulse article to show your GP when you request a dose increase. 

[Rachel_81]

You seem hypothyroid to me.

When you have a blood test do it as early in the morning as possible and do not take the levothyroxine, take it after the blood test.

I know how you feel, I cried at a few appointments until I decided to go to an endocrinologist. I hope you feel better soon.

Good luck!

[MS1983]

Thank you Rachel_81, its so hard to get them to listen to you. I was literally crying on the phone when the doctor was so blunt and rude to me. Going for a second opinion today taking my mum with me as she has had to battle with the doctors for my dad! 

Oh bless you thank you for your kind words and hope your ok now too

[greygoose in reply to MS1983]

If your doctor is convinced you Don't have a thyroid problem, it's just possible she set you up to fail by starting you on such a low dose - although it's also perfectly possible that she just knows nothing about thyroid!

Imagine that your gland is producing 50 mcg of T4 a day just by itself. But it is struggling to do that - a TSH of over 2.0 says that it is struggling. You start taking 25 mcg daily. The gland senses that you are taking hormone, heaves a sigh of relief and shuts down. That would mean that you've lost 50 mcg of T4 and replaced it with 25. So, instead of increasing your T4, you've actually had a reduction of 25 mcg! That can happen. And whilst your body felt relief at you starting taking thyroid hormone replacement, it now realises that it's just not enough.

So, what happens when you haven't got enough? T4 has to be converted into the active hormone, T3. T3 is needed by every single cell in your body to function correctly - i.e. make you feel well. When you Don't have enough to go round, the body, in order to preserve important systems like the brain and nervous system, shuts down receptors on less important cells. So, that's what causes symptoms.

Your body felt you were taking some T4, so switched on a few receptors. You started to feel better. But then it realised that what you were taking wasn't enough, so had to shut down those receptors again, and your symptoms came back. Not sure your doctor knows all that! lol

Anyway, just to make sure, are you taking your Levo in the morning, an hour before breakfast, with a large glass of water and nothing else? That's the way you get the best out of your Levo. 

You took your Levo just before the test, you say - what time was the test? That would have given a higher result for the FT4 than if you'd left a 24 hour gap. And you had breakfast, so that would have caused your TSH to lower. And if you didn't have your test first thing in the morning, it would have been lower still. So, your results are a bit skewed, and the TSH should probably be higher, and the FT4 lower.

Never mind what your doctor said, she's probably feeling totally out of her depth, which can make people rude - and, to be honest, I doubt she knew anything about how and when to take the test. But the important thing is, has she stopped your Levo or are you going to get a second chance at doing the test? If you do it the right way, there's a chance you might actually get an increase in dose next time!

Take care.   

   

[MS1983 in reply to greygoose]

Thank you so much I've been to the doctors and basically demanded that I want to be retested! My mum said this is the same that went on with my dad crazy history repeating itself. So I'm still taking the 25mg she hasn't stopped it. 

 I took my test at just gone 8 last time and took my Levo at 6.30 roughly I do have my tablet an hour before breakfast but I don't take it with water I just swallow it. 

So going to get my bloods done tomorrow I won't take my tablet and I won't eat and see what happens from there I think!  

Thank you for your explanation the doctors just want to say I'm crazy I think! Lol! I do appreciate your help here 

Take care too  

[greygoose in reply to MS1983]

You really should take the water with your pill. It needs to reach the stomach quickly, and not drinking to wash it down, could lead to it ending up stuck somewhere in the gullet.

Good luck with the next test!

[menothyro]

Hi MS1983 in my experience as per the labs before meds or after i was told to take my meds and do my labs 4.5 hrs after although i have read different! Anyway i spoke to my dr and still says the way to be done not before meds but after and he is an MD / INTEGRATIVE DOCTOR and knows more or seems to than my endo did as he goes by symptoms and how you feel not just lab ranges and actually looks at where the numbers fall so i hope i am wrong and he is right about when to test. Best of luck let us know what the difference is before and after i am really curious to see if it makes any difference or only a slight one

HUGS 2 U This is not easy and can be a long struggle but keep up the good fight no one should be in this position but sadly a lot are!! I WENT THROUGH THIS FOR 2 YRS AND STILL MORE ???"s than answers so very frustrating i get it and i am still fighting to get well feel like i am going to croak sometimes so i can relate ;0

Kat

[MS1983 in reply to menothyro]

Thank you Kat