WHY NOT RECOGNISED ENOUGH!

[Neon65]

The times I've researched my symptoms over the years to have forgotten what I've read numerous times. Hypothyroid for 10 years now and still no real answers and meds only help 50%. And why is it some of us who can't afford private have to be dying before we can see a specialist.. Normal doctors can't answer or sort the many issues we have.. I feel we are treated terrible. If Money was no option specialists would be biting our hands off.

[SarahJane1471]

Hi NeonI know you are frustrated but there are people on this forum that can help. If you post your blood results with ranges, in brackets, I’m sure people can help with advice.

Sarah

[Neon65 in reply to SarahJane1471]

Thanks will try and sort latest....

[Marz]

You posted 5 years ago and members offered their support - sadly you did not respond. Reading the posts and replies on the Forum on a regular basis helps you to learn and understand so much more. There is a great deal we can do to help ourselves - not everything costs loads either 🌻

[Neon65 in reply to Marz]

Thanks for this, I didn't always get notifications. I think this was the problem.

[Marz in reply to Neon65]

Click onto your Username where you will see your Posts abd Replies !

[Neon65 in reply to Marz]

Thanks MarzThink I need a dummy manual..lol

[Marz in reply to Neon65]

Did you click on Neon65 ?

[LAHs]

Sadly we have to DIY. You will have to spend a little money to begin with because you will have to start with a good blood test to see where you are, i.e. T3, FT3, T4, Ft4, TSH and other factors listed on this website numerous times. From that point you have to "fiddle" with your dose of, probably, Levothyroxine to a point where you are generating enough FT3 to feel well. That will take some time because you have to wait a couple of weeks before you will get stable readings. While the start of this process is a bit expensive you will eventually get to a stable state where you are just left buying or getting your medication from the NHS. If you rely upon the medical profession to lead you through all this you will become very frustrated because the chances are you will never succeed. Doctors only look at TSH results which can be very misleading. It's very scary that you have to do this yourself, but you have a choice, be scared for about six months or feel ill for the rest of your life - or at least many years.

[Neon65 in reply to LAHs]

Agreed! But my memory is so poor, and I'm up the doctors every month with one thing and another. The list is as long as my arm.i have many conditions linked that have complicated things. Doctors overwhelmed and just leaving my results as Satisfactory... I don't want to carry on like this, I live on my own with a teenage son, working full time, exhausted and stressed all the time. To find the time and understand all the jagon is overwhelming.. I feel I need professional advice from a specialist to get things rolling first but that means private which I can't afford. 🥵

[Lovecake]

Hi Neon65Have you had your B12, folate and vitD tested?

About 5 years ago my sister had terrible forgetfulness. It was so bad that she thought she had early onset dementia.

She would message me one day, then repeat it the next and say the same things on the phone as though I hadn’t answered her before. She was just about 50 at the time.

She went to the GP……..found out her TSH was 39! And her B12 was really low as was her folate and vitD.

They said she didn’t have pernicious anaemia, but gave her B12 injections.

Hey presto! She didn’t have dementia! She was like a new person. And towards the end of the 3 months it would start going again until the next injection.

She is on Levo now too for her Hashimoto’s.

But I just wondered if your B12 levels were low and contributing to your forgetfulness?

[Neon65 in reply to Lovecake]

Thanks for reply, I will have a look when I order my blood results. And ask....The thing is as I'm going along the more things..i.e conditions I'm getting.. I just seem to be getting one thing after another..

[Lovecake in reply to Neon65]

Sending a hug 🤗

[dizzy864]

Hi, I'm sorry that you have been ill for so long. I just wanted to say that I am one of the people who has paid to see an endo privately. I'm sorry to tell you but you have put far too much faith in the knowledge and ability of private endos.My last private endo led to disastrous consequences and made me much more ill than I was when I first saw him!! Be careful what you wish for springs to mind. The only way to good health is to educate yourself - it doesn't even cost money! Through my own research and thanks largely to this forum, I found that I needed liquid levo as I was not absorbing tablets. I was therefor permanently hypo even though my bloods showed I was hyper. My private endo, who had been in private practice for over ten years told me that he had never heard of liquid levo - it's been about for over ten years. He refused to ask my gp to give me a trial. I pleaded with my gp and she agreed, rather reluctantly. It's helped me enormously.

Thyroid patients are treated terribly by gps who are not trained to deal with us. Endos are much worse. They think they're training means they know everything and patients are fools! They're training is usually about diabetes not the thyroid.

Good luck!!

[Everdean in reply to dizzy864]

Please would you tell me why you weren't absorbing the tablet form?

[dizzy864 in reply to Everdean]

Hi, I can't say why I was not absorbing it. My bloods consistently showed I was above range for T3 and near the top for T4. Added to that my TSH has been suppressed for years due to taking liothyronine. Doctors repeatedly ordered me to reduce lio. Even a minute reduction left me really ill. Doctors refused to listen to my long list of hypo symptoms - weight gain, split eyebrows, no hair under arms etc etc. Since starting liquid levo 8 months ago, I have reduced lio by 25% as I became hyper. This clearly shows I was not absorbing tablets. I feel so much better although I m disappointed that hair has not started growing!! But I can live with that.

[Everdean in reply to dizzy864]

That is so interesting. I'm very glad you are now feeling better. I too have not had hair under arms etc. For about 20 years. In fact I'm starting to loose the tops of my eyebrows now. A new thing inspite if being on t3. It's really difficult to get the balance right isn't it.

Thank you for replying.

[Neon65]

Thanks for input, I agree with the facts there is not enough help for Thyroid patients.I however have researched until I'm blue in the face but can't retain info for very long..

My brain fog bad..

[dizzy864]

Unfortunately research alone is not enough. We still need doctor's to listen to us and many will not. Specialists and doctors need training to properly deal with thyroid problems.