Endocrinologist app

[mummytosix]

I had my appointment with the endocrinologist yesterday and despite the fact that he was lovely, he listened to me and took on board all my symptoms he still refused to do a full thyroid panel of tests. He agrees that my tsh is slightly high at 3.11 🤔 but I don’t meet the criteria for any other thyroid tests. He reluctantly agreed to run a test for coeliac and he is checking for diabeties, gall bladder issues and anemia but he thinks that all my issues are maybe gynaecological 😫 I wrote a list with all my symptoms, sickness, vertigo, heavy bleeding, low iron levels, hair loss, memory loss, total fatigue, painful hip knee and ankles with swelling, anxiety, dry hair and skin, ringing in my ears, shaky hands, pins and needles, nose bleeds, feeling cold.........but he doesn’t think it’s thyroid related. I’ve got to wait for these blood test results and if nothing comes back abnormal he will see me again in a few months to maybe increase my levo 😫😫😭😭 I just really don’t know where to turn next, finding a private doctor is beyond my finances 😫 I had private tests done in October which showed I had hashimotos, but I can’t afford to do any more.

[Purpleprincess1963]

Omg your poor thing I have had ringing in ears vertigo , hair loss quite a few symptoms same as you how upsetting and frustrating it makes us feel so depressed feel like doctor’s don’t believe us I really hope you get this sorted I feel for you .

[mummytosix in reply to Purpleprincess1963]

I just don’t know how to get it sorted. I’m taking so many medications I feel like I’m rattling and none seem to make much difference at all 😞

[Purpleprincess1963 in reply to mummytosix]

Me to I am taking loads of vitamins, I did buy a book called thyroid healing it tell you a lot about thyroid and vitamins to take, evidently this man they call medical medium is supposed to be really good x

[whispers]

You are in levo already? Your tsh is too high for someone on replacement hormones I make no wonder you feel I'll, why will they not increase it?

[mummytosix in reply to whispers]

I’ve been on levo since the beginning of May last year, I’ve been on 75mg for the last 6 months. Because my tsh is in range my doctor won’t increase it but I was hoping the endocrinologist would so I feel utterly defeated by my appointment. It feels like they are dishing me out more and more medications for different things but won’t consider the obvious one of increasing my levo. I’m taking stemtil for the vertigo, adcal for the low calcium, northisterone for the bleeding, omeprazole for the stomach issues, naproxen for the hip and leg pains and citalopram for the anxiety 😞 I’ve also had an iron infusion because my ferritin dropped below 1 and my heamaglobin dropped to 62 😞 I can’t tolerate oral iron.

[lisabax in reply to mummytosix]

Your GP should have been able to increase your dose. The

Official NHS guidelines say TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

That should be enough evidence for your GP. However it might be helpful to get hold of the guidelines and show them to your GP. You may need to ask Admin at TUK where that extract came from as I just copied and pasted it from another post. Hope this helps

[mummytosix in reply to lisabax]

My gp won’t increase my dose as he thinks all my other issues aren’t related to thyroid 😕

[Lora7again]

I would change Endocrinologists because your TSH should be 1 or under so you need an increase in Levothyroxine. This Endocrinologist does not seem to have a good knowledge of thyroid disease imho is he a diabetes specialist? because a lot are in the NHS. Also 75mcg is a low dose because my Dad who is 78 is on 100mcg because he is elderly.

[mummytosix in reply to Lora7again]

Changing my endocrinologist isn’t an option, he is the only nhs one in my area and going private isn’t an option 😕 he’s also my sons T1 diabetic endo, I think he covers all endocrinology in my county.

[Lora7again in reply to mummytosix]

I used to work for the NHS and you can go anywhere in the country with a referral letter. Don't be fobbed off ... I would not use my Endocrinologist in my area because to put it bluntly he is crap!

[Lora7again]

Here is a useful link

nhs.uk/using-the-nhs/nhs-se...

[MichelleHarris]

Wow how unsympathetic of your GP and Endocrinologist. How cruel! They dont know their own business. Very worrying! I hope you can get a second opinion and go elsewhere x

[MMaud]

Mummytosix, when I was in a situation where my GP was satisfied with my bloods, but I was not, and still very symptomatic, I knew what my GP would think, so had a bit,of a think of the way I would take it to her.

In the end, I asked if she would prescribe an additional titration, on a trial basis, then retest after 6-8 weeks. She somewhat reluctantly agreed, but she did agree.

When I had the agreed tests done, my bloods had actually deteriorated, so we went on titrating.

Have you tried the trial approach? It does somewhat limit their perceived risk, even when we feel strongly the risk is very, very low indeed.