Newly diagnosed with hashimotos!

Thankyou for your reply! Yes the endo did say that I would have to take medication for the rest of my life which doesn't bother me and im glad im finally getting somewhere with detailed explanations.

Dear Jennifer90764

Would you please advise me as to what tests are needed to do a proper full thyroid screening.

I had a CTPA scan done which shows as an incidental finding multinodular thyroid. I have all the signs and symptoms of hypothyroidism.

Now I have to wait for blood tests and a scan of my thyroid.

Many thanks

Hi Jean, to get a good idea of what is going on with the thyroid you would possibly be looking at TSH assay; Total T4; Free T4; Total T3; Free T3 and Reverse T3. Not easy on the NHS!  Other tests to comprise a "proper full thyroid screening" would include antibodies - Thyroglobulin/ Thyroid Binding Globulin/TBG; T3 Resin Uptake (T3RU); Thyroid Peroxidase Antibodies (TPOAb); Antithyroid Peroxidase Antibodies; Antithyroid Microsomal Antibodies/Antimicrosomal Antibodies; Thyroglobulin Antibodies/Antithyroglobulin Antibodies; Thyroid Receptor Antibodies (TRAb) and Thyroid-Stimulating Immunoglobulins (TSI).

Very long-winded!!  If antibodies are present it indicates Hashimoto's thyroiditis.

Thanks Jennifer for this valuable information.

What tests did the NHS carry out for you?

Will they do the antibody tests?

Hope you don't mind my asking.

Hi Jean

It is unfortunate, but although these tests are there, GP's don't tend to use them, seeing the TSH as the overriding determining factor as to how our thyroid health is doing.  If it falls within "normal range" they wont usually do anything else, even if you have symptoms and don't feel well. If you are outside the range they may do a total T4. This is all I have had as far as I know, it's certainly all I gehave got to know about.  Although I have been told by a Endo I have Hashimoto's, no one has ever tested me for antibodies.

Don't hesitate to ask me anything.  I'm quite happy to share.

Hi Jennifer

Thanks for your response.

I have been advised by a private Organisation that  carries out blood tests to havethe following tests done.

TSH.

FT4

FT3

Reverse T£

Thyroid peroxidase antibodies.

Thyroglobulin antibodies.

I have been ill since December 2013 and got nowhere until a recent  CTPA scan showed an incidental  finding of multinodular thyroid.

for two years

 

Should be reverse T3.Has to be done at the same time as TSH,FT4,FT3 for comparison apparently.

 

Hi Jennifer, thank you so much for your informative post - all the information I needed - I don't think I'll even waste my time explaining this to my doctor!  Thank you again.

Thanks Jennifer.

In one of your postings you mentioned that panic attacks and anxiety figure highly in throid disorders. Do you happen to know why this is?

Thank you.

Dear Jennifer

2. I had a ctpa scan last week which showed an incidental finding of multinodular goitre.

3. I am keen to find out as much as possible about this condition because of the severe signs and synmptoms that started in December 2013 and which are worsening.

I also know that the NHS does not do the full thyroid screening thus missing diagnosis and obvioussly treatment and management of this debilitating condition.

I am thus trying to find out al the blood tests that should be carried out and if necessary have them done privatekly to get some meaningful answers and start treatment as a matter of urgency.

 

Dear Jean,

I understood fully your reasons for asking questions and applaude your eagerness to understand what is going on in your body.  This I feel is the way we should all be regarding our personal health.  I am a thyroid patient myself, maybe with a little more knowledge because I am a retired nurse and been battling this condition for over 8 years now. Keep asking questions Jean. The more knowledgeable you are the more able to live your life as fully as you can.  God bless....

Hi Jean.  The low production of thyroid hormone causes neurotransmitters to go haywire which in turn causes the anxiety and panic attacks.  Neurotransmitters are the brain chemicals that communicate information throughout our brain and body.

I was too diagnosed 5 days ago, and want to know information.

The thing is nothing can be done urgently. It takes time to find out what the problem is, no doctor will give you blood tests and say "right you have this let's treat it right now"

I had to wait around 8 months of various tests and feeling crap that's how the NHS works.

On here, we all work together in providing help and comfort.

Hi Jean/Emily,

I have seen these comments and will Private Message both of you. This website is owned and run by patient.info and all posts are from patients/users, not the website. The only time anyone from the site will post is myself and these will only be posts like this to do with administration of the site. 

Regards,

Alan

Emis Moderator

I have now removed the discussion/comments about private messages. If any user has any issue in the forums please contact me, do not post details of private messages in the forums. There is an FAQ section linked at the bottom of every page in the forums with more information if required.

 

I cannot get through on the link you provided.

A pop up on gambling keeps coming up preventing me from sending you my response.

 

Thanks Jennifer for your kind words and very welcome support.

I too am a retired urse and have been feelinhg quite ill since December 2013.

Last week a CTPA scan done following a VQ scan showed a multinodular

Thank you Jennifer for your kind words and very welcome support.

I too am a retired nurse yet do not know much about thyroid conditions except the very basics tat we are taught and expected to know about.

Would it be possible to e mail me privately ?

This condition which I suspect is hypothyroidism may account for most of the now intolerable signs and symptoms I have experienced on a daily basis since December 2013.

I also ave peripheral neuropathy. Many of the drugs that are usually prescribed for this are contraindicated due to long qt syndrome!

What a mess.

I have daily attacks which have been attributed to epilepsy yet do not follow the classic typical ep szs.

If THE LOW PRODUCTION OF THROXINE CAUSES THE NEUROTRANSMITTERS TO GO HAYWIRE THEN THIS EXPLAINS WHY AEDS ARE INEFFECTIVE! oNCE AGAIN THANK YOU FOR YOUR KINDNESS.Sorry caps left on.

Hello Emily

Thank you for your e mail.

I understand about the alleged financial constrainsts of the NHS .

However what is the point in not having a proper screening and diagnoises being missed as a result of this and ensuring more and more hospital admissions?

Proper screening as it used to be done years ago was done for a reason and was before lay people took over the running of the NS.

Nowadays lack of screening means diagnoses are overlooked and patients suffer as a result.

Those are the facts. I am afraid.

It is possible to make a diagnosis straigt away and in some cases it is essential in order to save lives.

 Following failure of the NHS to make a correct diagnosis I went privately and was operated on a week later.I had a cholecystemy for a large gall stone which could have perforated the gall bladder and caused chemical peritonitis etc.

You asked what I had been diagnosed with. I was very recently diagnosed with a multinodular goitre on April 27 2015 hence being recommended to your forum.

Take care

 

Dear jennifer

I know that I have replied to your posting before but the reply was disjointed due to getting used to a new laptop.

Thank you again for your kind words and support.

I too am a retired nurse but know next to nothing about this terrible condition. As stated previously a CTA scan showed an incidental finding of a multinodular goitre.

I am unsure whst blood tests the GP will now do but I understand that they will be basic ones which may end up being ignored etc. I could be wrong. I am considering having the full screening done privately that way I get the results sent directly to me, have the full screening and also can present it as au fait accompli in order to get an early referral to a surgeon or endocrinologist.I have frequent daily seizures atypicaal of epilepsy that have failed to respond to anti epilepptic meds. I have hippocampal sclerosis .

Please keep in touch I feel very isolated in all this mess.

I also have long qt syndrome,peripheral neuropathy, depression, anxiety which all started in Dec 2013 after an infection and the prescribing of three antibiotics at the same time by a hospital A and E dr.

Best wishes.

 I'm here if you need me Jean.  If you can afford full screening I would go ahead and have it done.  As you imply, it gives you ammunition if you have the evidence to hand.  Wishing you well...

Jennifer

Thanks Jennifer

The whole experience has been and still is an absolute nightmare.

An NHS hospital flatly refused to tell me what thyroid screening they carried out.

Another one said that they do the TS

No wonder there are so many people walking around ill.

H and are guided by the Thyroid Foundation, by Association of Clinical Scientists and by the British Thyroid Association.

  

Laptop is playing up .

Jean, for some reason, and I suspect it has to do with money, the NHS is not forthcoming with information.  Medication offered for thyroid conditions is synthetic T4 only, which for some does not work.  Any attempts to secure alternative medication ie Natural Desiccated Thyroid or T3, and I have made many, usually meets with strong resistance.  For some people T4 only (that is levothyroxine) will work, and work well.  However for some (me included) it doesn't work well at all and we are left to cope with hypothyroid symptoms.  To make matters worse we can be seen as hypochondriacs or in need of anti--depressants!  A lot of GP's rely on the TSH test only, if your lucky T4 too, but for some reason (cost?) if your test result falls in the "range" you are classified as well even if you feel awful!  I don't mean to be negative, but it is as well you are aware of what's generally out there.

Thanks for the info.

I am concerned about the meds now.

You say  that T4 did not work for you so what did you do?

Hope you do not mind my asking.

I took T4 for 8 years but still had symptoms.  I tried with 3 GP's to let me have a trial of Natural Desiccated Thyroid but all were angry I should even ask, let alone give me a trial. I now buy my own Natural Desiccated Thyroid.  It is working well for me so far.

Dear Jennifer

I am struggling with this new laptop.

Thank you once again for your help and invaluable information. I am keen to get this treatment under way but safely of course. I have been making some inquries about Dessicated Thyroxine Hormone, names of suppliers etc and come up with some hopefully useful information.

Is it possible to e mail you privately?

Perhaps you could just send me a quick private e mail just one word would do then I can just reply. I am afraid of making a mistake as before and sending what I thought was a private e mail and it being sent to the message board. I put this down to stress caused b y the hypothyroidism and the signs and symptoms which are truly horrendous.

I would like to say that I am truly empathic to everyone suffering with a thyroid condition . 

Thanks Jennifer.

Hi Jennifer and Jean, I live in USA and I have had Hashi's since 1987.  I am an RN.  Back then 1980's everyone in USA was started on Synthroid.  I swear they must give the doctor's a 2 week vacation somewhere for prescribing it.  LOL. Now with that being said, My body hated it, and my level was not coming up...I was on Armour Thyroid and it did come up but it became hard to get Armour in USA, so I am on cytomel and it helps me so much.  Our bodies are complex, in some of us we can't absorb the med correctly!!!  I have a great GP who listens, my Endo wanted to put me back on Synthyroid after I told him it did not work on me ....needless to say I got rid of him and GP handles me on this.  He listens!  Find a doctor who listens and is not in it for the money or favorite med. There are a ton of different meds out there, but some doc's are stuck on Synthroid. My sister who was also diagnosed after I got tested can take the synthroid.  I say be your own advocate and demand what is right for you.  I hope I helped.

 

When I clicked on the blue link another advert came up for shares.