Dismissed (again)!

[Bird-Girl]

Well been for numerous tests via the Endo and guess what?

There's nothing wrong!

So am writing a letter to my GP saying this:

I am writing in regard to the appointment I had with DOCTOR and his corresponding follow up letter.

I am very concerned that even though blood tests were taken, he has underestimated the severity of my symptoms. In fact, I’m afraid I feel that I am being dismissed despite advising of my symptoms and further supplied a print out of what these are, including:

Severe Shoulder, hip and knee pain (to the point where I cannot physically move/walk)

& extreme nausea.

Although my TSH & FreeT4 was tested, I wish to request that a further set of tests be performed to see if they can show a link to symptoms:

FT3 - Free T3 (the active part of triiodothyronine)

TPOab and TgAB.

Folate and ferritin

Vitamin D and Vitamin B12.

and

a Saliva Adrenal Gland Test

I understand Doctors and Health Professionals are unable to give more time to their patients to discuss/explain health condition(s), therefore I have had no option other than to research what I am up against as my symptoms are not being alleviated by Levothyroxine alone. Perhaps we are not looking in the “correct area” for a definitive prognosis.

Please understand; I am not trying to play doctor or self-diagnose, I just want the symptoms I am experiencing to go away.

So as well as my request for additional tests, I have enclosed for your convenience some information to support/aid my reasons for further testing, and have supplied corresponding links to the website’s where this information has been sourced.

I do hope that we can try and work together to “fine tune” my Hypothyroidism treatments so I can alleviate the chronic pain I am in.

Yours

What do you think? I am still going to have to wait 18 years for a result? LOL!

Or is there anything you can think of that I need to add that I am missing off?

Thanks in advance!

[Bird-Girl]

So are you suffering with the "Fibromyalgia" they like to quote too Greenfairy?

One things for sure, on this forum they do advise you that you shouldn't have to "put up with" your symptoms as they are not "just in your head"!

It makes me wonder if they think we are going to the Dr just for the fun of it?!

By all means use my letter if it will help you

[Bird-Girl]

You are most welcome!

Now my GP said because of my heavy menstruating and being 38yrs I would need to have a scan?! And my hip pain? He sent me for an x-ray, which proved NOTHING My thoughts, he is going to run out of tests to perform soon so perhaps I can suggest some!

Hashi's must make it extra complicated for you - how did they diagnose you with that as it is something I didn't know if I was experiencing? Or adrenal fatigue? It is a minefield isn't it?

Lets hope you manage to get somewhere too x

[Bird-Girl]

Yes I think so, so I take it is not Hashimoto's then. I am inclined to believe it is Adrenals to be honest, but I will be taking this letter to my GP face to face so he wont have any wriggle room!

That's the plan anyway!

Oh and be prepared for a lot of the 3 dreaded words..."within normal range" I hate those words!

Good luck in your treatment x

[EssaA in reply to Bird-Girl]

Check your tests for Anti-TG Ab and Anti-TPO Ab. And thyroglobulin. If not tested, you need those too. And the endo does not always tell you if you have Hashi's. Mine did not. He treated me for hypo. I found out by accident 3 years after first test that it was Hashi's because THEN I did not know what I was looking at. And I trusted him. Best of luck!

[Doglovingwife]

I think that is a very well written letter and hopefully will get the ball rolling.

Is there a higher body / organisation you can send a copy to who will maybe investigate your case further

[Bird-Girl]

Thank you

I also meant to mention if you haven't seen it, check out this website ITS BRILLIANT!

Highly recommend them

stopthethyroidmadness.com/

[bluebug]

Just to give you a bit more information so you don't actually have to include loads of links which the GP will probably ignore.

This is because GPs are now so versed on people looking things up on the internet that even when you don't e.g. in my case ask another health professional, ask as many of the women in your family, they accuse you of doing so instead of asking you where you got your information from. They then often dismiss you as only being able to look on the internet.

If you are not aware of it this forum is run by Thyroid UK.

Thyroid UK is a charity (no 6254073) that is recognised on NHS Choices and in the NICE guidelines for those with thyroid disorders.

if you go to the main site there is this page on getting treatment and diagnosis for thyroid conditions - thyroiduk.org.uk/tuk/diagno...

If you read the page I've linked to then you will be able to see what tests thyroid UK suggest you should have. Then simply state you have been in touch with Thyroid UK (don't say the method), what Thyroid UK's advice is, who they are and how the NHS recognises them in your letter.

Finally in order to ensure you at least get a vitamin D test or can argue for one at a later date, state clearly in your letter that your symptoms are making you housebound. And whether the pain in your shoulder, hip and knee involve joints/muscles/bones.

[Bird-Girl in reply to bluebug]

That is so helpful bluebug I can't thank you enough!

[EleanorM-G in reply to bluebug]

Amazing advice.

[Bird-Girl]

Apologies Doglovingwife, I posted a repy and it didn't show?!

Am not sure of a higher up organisation, but am trying this below that BlueBug has receommended...

So I have changed one paragraph to read this instead:

Therefore I have been in touch with Thyroid UK (recognised by the NHS and within the NICE guidelines) and they have advised although my TSH & FreeT4 was tested, I should request a further set of tests be performed to see if they can show a link to symptoms:

and then continued on

Thank you so much Bluebug, I think that just might be the clincher and the Doc wont have any wriggle room with that one *fingers crossed*

I just hope others here will use this info and get something back from their GP/Endo too.

Will update once I have seen the Doc (am trying not to get my hopes up) but am pretty tenacious so hopefully I will get somewhere!

Thanks so much to you all again x

[hebden]

Brilliant letter Bird-girl. Says it all. I don't think the doctors will ignore you with this. They are so fond of saying its all in our heads or its our age. Well done I hope I can do similar. Gentle hugs Joolz.x

[Bird-Girl in reply to hebden]

Oh I really do hope so Joolz! I also hope its helps others if they wish to use this info/letter too as it seems just impossible that everyone can be ignored like this!

Another thing in common to hypothyroidism - is budgie keeping as if you bird is sick, 9 times out of 10 vets will prescribe an antibiotic drug called Baytril and expect you to be content with that. When in fact if your bird has a virus or fungal infection antibiotics don't DO ANYTHING.

So its not a case of "one size fits all"!

I'll get off me box now

[hebden in reply to Bird-Girl]

We are all individuals with different genetics but get treated as if we are all the same and Its appalling how we get ignored. When Ive told doctors that my paternal grandmother and my Mums sister were both hypothyroid I was told neither were a close enough relative! (I inwardly swear at this point).

I used to keep budgies and loved it especially when the babies were just getting their feathers and you could see what colours they were going to be. I love their characters. I can't look after myself now let alone budgies. I had to find new homes for my lovely chooks because I can't manage to look after them anymore. I found that vets didn't like treating birds incase they died.

Gentle hugs Joolz.x

[Bird-Girl in reply to hebden]

I am sorry you cant keep them Joolz it breaks the heart doesn't it? For such little birds they have big characters And my mum keeps Orpington chickens!

That is rubbish about the Dr saying that your relatives weren't close enough genetically re the hypothyroidism?! My great great grandmother died of diabetes - and I was diagnosed at 17 months old?! There is a connection if it is in your family history.

If we work together - we can beat the health professionals after all knowledge is power

Hugs Sam x

[Bird-Girl]

Seeing the GP armed with letter this morning! Posted a copy off to my Endo too so when my Dr communicates with him he will know what for

Wish me luck, will report back later!

[Bird-Girl]

Right - I do believe (dare I say it) that we are starting to make some headway with this:

Went to the Dr armed with letter and he sent me up to hospital to blood test for:

THS, FreeT4

Folate and Ferritin

Vitamin D and Vitamin B12

As for the FT3 - Free T3 (the active part of triiodothyronine), ATA, TPOab and TgAB for Hashimoto’s the Saliva Adrenal Gland Test (for cortisol levels) he has advised that they are all under my Endo's jurisdiction to test for. So went to get bloods done and chatted with the phlebotomist and she advised that I could speak to my Endo's secretary to get those requested! I am waiting for the last set of blood results from my Endo so should get those today, if those are not listed I shall phone the secretary and state that I need these tested for and what happened with my GP yesterday.

Fingers crossed I have sorted the GP as he is now providing me a letter to help with my benefit claim because of the pain I am in and just got one hurdle to go with the Endo.

Fingers crossed guys....

[Bird-Girl]

Here we go again

Managed to get my test results back from Dr and they are as follows:

Folate: 7.2ng/l Range (4.80-19.00ug/L)

Vit D: 62nmol/L Range (>50nmol/L = Vit D Sufficiency)

Vit B12: 371ng/L Range (160-800)

However, I cannot seem to find my Ferritin on my list of results and wondered if it was called something else? My platelet count as well as my potassium and inflammatory markers are also high...any thoughts as to what is happening?

First I think my GP is listening and then he announced over the phone that my pain is being caused by diabetic myopathy which is B*&^%! as my blood sugar Hba1C is 51mmol/mol aka 6.8 (in old money).

Now it's a case of how can I get in touch with the Endocrinologist to persuade him to do the Ferritin, Free T3 and Salavia Adrenal Test? I dont know if he will even see me as I fear I either have Hashi's, Addisions, Adrenal's issues or all 3?!

Any help or advice appreciated from you knowledgeable people would be greatly received right now x