Update on Endo appointment this morning! (warning long post!)

[Duffy26]

I think I am still reeling at the moment! frustration then turned to tears (not whilst in her office fortunately).

My advice is please do not go and see the endo and registrar I saw this morning. I can let you know from where by PM if you wish.

Basically they both said that I am not hypothyroid, my pituitary is working just fine and that my FT4 level is the level that my body is happy with otherwise it would be abnormal. Again I kept asking why I had so many hypo symptoms especially with the family history. She just said its something else not thyroid perhaps Sjrogrens and that I should take hydroxychloroquine and that might make me feel better. I argued that Sjrogrens does not cause coldness/constipation/ exercise intolerance/low heart rate/high cholesterol/High BP etc etc.

She ignored the FT3 result I took last week 3.75pmol (3.10-6.80) and said this is not reliable as it fluctuates so much.

She just had this half smile stared at me and said there is nothing she can do as my thyroid is normal. I saw the younger registrar smirk but im not sure if that was due to them thinking im deluded and don't know anything or because I was coming back at her with counter arguments. In the end I gave up though as it was going in circles and she did not agree that I have hypo symptoms.. I stated how lucky my nan was to be diagnosed on symptoms and given NDT, she just said that's so old fashioned and also no one uses the TRH test anymore as its so unreliable.

She said its up to me what I do but warned me if I did trial levothyroxine unnecessarily then I risk osteoporosis in years to come and also heart disease. I didn't bother to reply to this one.

Basically she said for a trial of levo my TSH will need to be over 10 or My Thyroid Antibodies would need to be raised along with a TSH between 5-10 or FT4 low e.g .5-8and then only If T3 abnormal.

In my frustration I forgot to ask for a print out of results but I remember the registrar said that :

TSH 3.01mU (0.35-3.50)

FT4 11 pmol (8-21)

I showed them both my private results (shared here Monday) and she said we don't advise using companies which are not regulated! I explained that County Pathology were accredited and used by some private GPs and NHS. She asked who advised where to get tested and I said its on the Thyroid UK site places where you can get accredited tests. She then said 'oh Thyroid UK , they are a strange organisation' !! I couldn't believe it, but I didn't have a quick enough answer to that one. I also reminded her that I could have got a diagnosis on past results if I was in America or some European countries. they did not answer that one. Just kept arguing that the TSH test is the best and mine is working properly so no need to check the pituitary (even though the Registrar had said he could do that before she came in).

I then asked what we should do about the low folate level and also which was abnormal last year. She said I should nothing about it and its not a good idea to keep supplementing when unnecessary as my body will just excrete them. I should just eat a healthy diet! I was very annoyed at that answer and told her that I thought that was a rude thing to say as I do already eat healthily but clearly something is making my nutrients/vits keep dropping despite trying to increase them. So I said why is my digestive system causing me so much discomfort this could be causing the low vits etc. She just said no idea you will have to see a gastroenterologist!

I then said thank you we will have to agree to disagree and I left the room. I was so angry but now im feeling sad quite despondent. They obviously think im an idiot and am imagining these symptoms. I hate to think what she will write to my GP about me!

Basically if I have to wait until the TSH is over 10 or my FT 4 is between 1-8 then im basically going to be on the floor. Wont be able to function or work or have any hair left! and will walk around like a 90 year old.

Sorry to rant but I don't know what I can do now as that's it.

[Dee8686]

Can you self treat? You can get desiccated thyroid from a naturopath I believe. You can also get a list from thyroid uk for endos that have been recommended by thyroid patients. X

[Duffy26 in reply to Dee8686]

i could. This is the reason I went to my GP as I said I was considering trailing myself. It was her who referred me as she didn't want me to do it hence she referred me. Unfortunately the Endos letter to the GP will just confirm to my GP that Im not hypothyroid at all. I have some thinking to do.

x

[Duffy26 in reply to Duffy26]

they put the fear of god into me regarding trialling levo uneccessarily i.e I will end up causing so many other health issues (which they would not take responsibility for)

[Peanut31]

Hi Duffy26,

I learnt a very expensive lesson that Endocrinologist are a waste of time and my money.

I saw one privately as felt terrible. I had no idea it was thyroid related and as it was all new to me, and I made the mistake of taking his every word.

I tested positive for Epstein Barr virus and my thyroid results showed high antibodies.

He confirmed I had Hashimoto’s and a scan confirmed this (again at my cost).

All my vitamin levels were low, which I got back to an acceptable level and he tried to fob me off with anti depressants which I refused to take. I took anti virus tablets for my Epstein Barr, which had no effect.

However, after several visits I noticed all we seemed to focus on were my vitamin levels only.

That’s when I joined this forum and another as I just wasn’t improving.

I paid for private blood testing and thyroid results were out of range, showed to my Endocrinologist, but, turned around and said no medication would help me.

Needless to say I felt ripped off and angry with this.

I was still dealing with this black hole I couldn’t get out of.

I questioned him and I said so that’s it, I’m 40 years old and this is how my life will be.

He told me to go on a long holiday!!!.

Anyway , cut a very long story short, I got worse over Christmas and went to my GP surgery, the GP basically said that as the Endocrinologist wouldn’t prescribe anything she couldn’t help. I went away feeling let down by the system.

My hubby urged me to see another GP within that surgery and he could see I was ill. He ordered full thyroid and it’s showed my TSH was 12.2 and others out of range, my antibodies results had also increased, despite me going gluten and dairy free.

The surgery called me immediately and the GP started me on a 50mcg of Levothyroxine, this has now been increased to 75mcg with a another blood test in a further 6 weeks with a view to increase dosage. I am feeling a lot better, but, not quite hit the sweet spot yet.

I have been told that until your TSH is 10 or over they cannot treat you.

I must say the GP that prescribed me Levothyroxine has heard of this Endocrinologist and didn’t have a good word to say about him. My GP said my case was straight forward I had antibodies present and I would not get better. My GP also said he looks at all the ranges and he spent some time studying thyroid related issues.

You could try self medicating with NDT many do, but, make sure all your vitamin levels are correct first.

Best wishes

Peanut31

[Duffy26 in reply to Peanut31]

hi Peanut 31. thanks. I have been monitoring my vitamin levels and some do need improving, however I had similar results last year and despite raising them I still had many hypo symptoms. I am too being let down by the system. I cant see my TSH ever getting to 10 or if it does will take far too long. I am just so shocked that a Consultant can have so little understanding...or maybe they do but they put on this stance as they are advised not to treat. I'm going to go and see my GP and tell her how rude and condescending this Endo was and to let her know I may go down the functional medicine route (however how I will find all the money to do this I do not know at the moment!!).

[Duffy26 in reply to Duffy26]

I feel like writing to her and enclosing research papers/articles proving that the TSH test and thyroid diagnosis / treatment is so poor in the UK! and maybe she would want to go back to Medical school or read up on these papers!

[marsaday]

It is important to realise you probably know more about this area than the endo. Don’t be frightened with self treatment. Give it a go.

Your ft4 is low at 11 and tsh of 3 is getting to high. Plus ft3 is low.

See how some t4 works out and if you improve go back and state your case. This will be real evidence you need more thyroid hormones.

The next stage Involves experimentation with thyroid meds. This can take a bit of time to get right

[Duffy26]

hi marsaday. yes you are right, perhaps I am more switched on than her now, its just the way she kept saying over, there is nothing wrong with your thyroid! despite me explaining that my TSH not rising high enough and hormones were nearly abnormal on both NHS and Private tests. She made me feel like I was making it up and wasting their time! I admit today's appointment has upset me and im rather scared at the thought of self trialling. If I do and I do improve then yes I will take that back to my doctor however I doubt she would then prescribe as the Endo made it quite clear that levo would only be issued on a TSH of over 10 or FT4 around 1-5. I don't think I have ever seen anyone with a FT4 level as low as that before she will treat!. My GPs will not prescribe unless endo says ok..

thank you

[Paula101 in reply to Duffy26]

I agree with marsaday you know your stuff & your Endo knows nothing.

The fact she keeps repeating "there's nothing wrong with thyroid" confirms her complete lack of knowledge.

You did brilliantly asking specific questions which she clearly couldn't answer.

I see it as a victory for you as she's so clueless. You've every right to feel frustrated since she couldn't help.

She's weak, as she used her rudeness to defend her 'empty head'.

You did yourself proud 🙂👍🏻

[Duffy26 in reply to Paula101]

ahh thank you Paula101, I did feel frustrated and angry but this afternoon I don't feel so bad. Im proud that I actually stood up and asked them counter questions. I don't think she had come across it at all...someone actually questioning her!

When I asked her what happens if and when my thyroid hormone drops below 8 will she prescribe levo then? answer no as anti bodies have to be out too.

She just stared and didn't know what to say...!

Anyway thank you for the support.

[Paula101 in reply to Duffy26]

Your welcome Hun. I'm glad you are feeling calmer 😊as someone winding you up doesn't help either........and breathe🙂

[Duffy26 in reply to Paula101]

Thinking about it now it was like a stand off. Who could stare the longegest with a smirk haha. As i had to get to work i couldnt stand the waffle any longer and left lol

[marsaday in reply to Duffy26]

I don't get how people can be scared of self trialling when they live a horrible day to day existence. I self trialled and i had no fear. I just wanted to feel well again. It is a good job i did as well because today i feel great and have a pretty much normal life. It took a good while to get here, but i am here. I served a prison term of 16 years in the hypoT jail, so really taking a bit of hormone was not that scary.

This is what i did, it may help you see that you can dominate the endos to help you.

Ill at 21 with a TSH of 2.4 and FT4 of 14.

At 37 TSH was 3.7 and Ft4 was 12, so not far off your results.

I felt exactly the same aged 37 as i did aged 21, and that was very ill.

I used NTH initially and got much better for 6 months and then i stopped them totally. Don't ask me why, but it was all a new world to me and i was making it up as i went along.

After 3 months i started to feel ill again. I went to the endo and pleaded with him to help me, but i was "fine". I didn't realise at the time it was thyroid and was thinking it may be more of a testosterone issue, so i went away confused and very ill by this time.

Through desperation i started NTH AGAIN about 2 months later. So i had been off thyroid for 6 months. Again i got much better.

I went back to the endo and this time saw the head consultant. We had a good chat and i explained what i had done with my ad hoc experimentation. Starting thyroid, getting better, stopping and getting ill again and then starting again and getting much better.

He agreed this showed i needed thyroid meds and put me on T4 and T3.

Today i use T4 only really, maybe a little T3, but my body converts well and T4 does the job.

I have found NTH and T4 and T4/T3 to work the same, but at times i have found a little T3 has been better. I think over time my receptor sites have come online a bit more and so i don't really need the T3 anymore.

The only way to get well is to take your health into your own hands. The world has changed with the internet and patients are allowed to share and swap their own experiences. This is valuable data and it is making the gate keepers of health knowledge more redundant each year.

[Duffy26 in reply to marsaday]

I suppose im just worried that should things go wrong then they (gp and endo) can say there you told you so etc. But i am going to self trial and i think my decision is to try T4 on its own first. This way if things improve for me then i can go back to the docs and explain that i feel better. She might then support me or she may not. Im sure she wont support NDT as she doesnt know what it is.

[Rmichelle]

Hi i am currently on my 2nd endo but they are all the same they have a lack of empathy and little patience and do not understand how the thyroid works😨. I go to my appointments expecting very little and that way i am not disappointed, they all have the same dribble knowledge and have the fluent language of blah blah blah. Learn as much as you can from this great forum-people who have been there, done that, and worn the t-shirt. These are the experts not endos who just like the sound of their own voices!!!

[Duffy26 in reply to Rmichelle]

Sorry state of affairs isnt it.

[Duffy26]

Thank you

[Naomi8]

I was on thyroxine for 16 years,with many hypothyroid symptoms unresolved,fatigue being the worst one,but also regular episodes of tachycardia forcing me to lie down flat without a pillow to get it to stop & constant ectopic beats.

When I relocated,I managed to get T3 prescribed,but after 2 years,this was withdrawn.When I went to see the endo who prescribed the T3(whom I had never met)to argue my case for beng allowed to stay on it,I was instead given an appointment with an endo who told me he was going round the country putting people back on thyroxine & that the endo who had prescribed T3 for me had the most patients on T3 he had yet seen,He wasn't interested in the improvement in my health & wellbeing.He wanted me back on thyroxine,& on a lower dose than I had been on prior to starting T4/T3.

I had already been topping up with BYO T3,as I felt better when I dropped the thyroxine.I have never used a private doctor or prescription.Too expensive.

After this appointment with the endo,I completely gave up on the NHS with regard to thyroid treatment.They haven't a clue & have rigidly closed minds.

There's only so long you can keep banging your fists on a closed door,hoping it will be opened.

I now self-medicate with NDT.

Its a scary journey when you first begin,but it gets easier as self-confidence grows,and becomes self-empowering.

I couldn't have started this journey without Thyroid UK,or continue on it without the support & knowledge of this forum & its dedicated members.

[Duffy26 in reply to Naomi8]

Glad you feel better. Without the help of this forum i would not have been able to fix my vitamin deficiencies or to have had the courage to probe her further or tell her i do not agree with her decision. Its worrying how ignorant the majority of medical staff are re thyroid. Thank you for reply x

[thyr01d]

Hi Duffy, I too had an unrewarding time with the endocrinologist I was referred to but I didn't give up, I persuaded (in a letter) my GP to refer me to another endo and am now being much better treated and recovering. I could probably find you a copy of my letter after Thursday if you'd like to see it.

It's really upsetting being brushed off but keep your chin up and I'm sure with the help of this site you will improve and maybe feel completely well again.

[Duffy26 in reply to thyr01d]

Hi thank you for your kind words. That would be nice. I am going to write to GP explaining how insulted i was by her attitude and narrow minded thinking as i wont have time in the follow up appointment to talk at lenght. I will ask again but may have to wait a little longer as with my tsh still being within the range its a much harder battle. I need to let her know im probably going to self medicate as i cannot wait until tsh is 10. I. Also deciding whether to write a letter of complaint to PALS due to her insulting me regarding supplementing folate and suggesting i should just eat healthily. Also the registrar smirking during the consultation. If i did the same to my client id be sacked!..thank u x