GP is not going to treat thyroid - where to go from here

[Gardentiger]

So the background to this is I've had a few slightly raised TSH results over the years and a lot of symptoms that suggest hypothyroid, my most recent test on may was
TSH 7.51 (0.34 - 5.60mu/l)
FREE T4 9.5 (7.9 - 20 pmol/l)
Serum B12 266 (120-625ng/l)
Serum foliate 6.6ug/l
Serum ferritin 28 (11-307ug/l)

Also after discussing with GP, he got the lab to test antibodies that are 'slightly raised.' as I fall into the subclinical category, he said to get another blood test mid August and he would consider treatment.

Today I had a phone appointment as Id had a fecal test due to bowel issues, which has not shown anything sinister so it looks like IBS. He also mentioned about getting the blood test in August, and I asked if it comes out with similar results as the last test will he be treating me. He said no he wouldn't, as it would go against guidelines.

I feel like I'm at a total impasse with this GP, and know I'm going to have to change surgery. I did mention this to him and and his voice positively lit up and he said im welcome to move Gp. I'm clearly a problem patient 🙄

What I'm worried about is that if I change GP, is it going to be the same issue? I feel so dreadful all the time. I'm even considering self treatment, as I've read about natural dessicated thyroid. I'm worried about going down this path though, as it's going to get very expensive very quickly with having to get blood tests to monitor my levels. I don't really have the money to do this!

Does anyone have any tips for how to approach a new GP with the issue that will make them take me seriously? It's so hard that it's all so difficult, because I'm so crushingly exhausted all the time. I'm terrified that I will fall asleep at the wheel driving one day, I'm that tired. I'm piling on weight even though I'm eating less than ever, my feet are too puffy to get into most of my shoes and my face is puffy too.

Thank-you for reading

@ArabellaStrange

Having looked at the qualifications of the person who runs Quackwatch (Stephen Barratt, for those who are interested) and his 'qualifications', as well as a few other areas of that site, I am led to question why a GP would think that was a good resource to get medical info from. Surely NICE guidelines or peer reviewed articles published in a journal such as BMJ would be a better resource? Having had fuckery going on with my thyroid for since my early 20's, which shows my issue is more likely to be related to HPA axis dysfunction, that I can not get investigated or taken seriously (have been referred to endocrinology before but on the wrong pathway by GP, which was only the start of the fuck ups that happened) I have given up trying to be taken seriously by the medical profession (not the only bad experience I've had by a long stretch). I manage, just about and just try not to engage with Dr's as much as I can nowadays. Pretty sure they have me down as having Munchhausens. Would love to be able to swap lives with them for a day so they can suffer the chronic insomnia, the tinnitus and ear leaks, the tingling feet, the random shock like pains that come and go, the clicking and aching joints, the IBS that goes from constipation to diarrhoea and back again, the acne, the inability to do exercise because of the pain it leads to and the constant underlying wish to be dead, as this is no life for anyone to have to live.

@ArabellaStrange we are twins! I also click like a pair of maracas and have gone through exactly what you have, every symptom down to the T. Am getting private help and feeling better every day. If you can afford it GO PRIVATE.

The NHS GPs are bloody cruel bastards. That was and is a shock I will never get over.

Hello, please could you message me re getting hold of NDT? I ran out last year and am back on Levo but am desperate!
Thank you

A few months later and I'm reading this thread. Just wondering did you get treatment in the end OP?

My TSH is only 4.06 but I feel utterly dreadful. Debilitating constipation that I'm treating with all sorts fairly unsuccessfully. I don't think the GP wants to know.

I had the same problem. GP refused to treat me. He told me to take up Yoga. I gained 3 stone and had all the symptoms of an underactive thyroid. In the end, I saw a doctor privately. He immediately diagnosed and treated me.

@Mrsorganmorgan what were your levels?

I would do two things.

I would go on the carnivore diet. It will sort out your guts and it's like a reset button for your health.

I would ask my GP to investigate why I feel so ill. Put the ball in his court to diagnose and treat you. He can't just keep fobbing you off and he might find something else.

I had a very low TSH and an almost undetectable T4. The doctor I saw did remark that my mother had died of Addison's disease. He seemed to see a link. I still take Levothyroxine at a much lower dose that I did when I first saw the GP. I take 75mcg per day.

My hair has never recovered properly. It was falling out in handfulls, before I was diagnosed and I still have bald patches. I weighed more than I did when I was pregnant!

I go on an Internet forum called Health Unlocked. If you post your results on there you'll get given advice. They are not doctors, but I have much more faith in them than UK doctors.
It's worth a try

From what I can gather GPs get only 20 minutes training in thyroid problems. Look at Heath Unlocked. They have a list of private GPs.

Health

GP's have a get out clause now courtesy of Simon Wesson, Kings College.
Your CGC is funneling you into one of these www.kingsfund.org.uk/sites/default/files/media/Elspeth_Desert.pdf

If they don't test or diagnose they can claim immunity by giving you a referral to get rid of 'unhelpful thinking' (unhelpful to GP's presumably.

Oh, OP you also need to look at the B12 even though it's in range - that often happens if you had anything containing B12 in the months before the test. B12 is in lots of processed goods now, including energy drinks.
It looks like you have malabsorption from low stomach acid and autoimmune issues may be behind it.

I paid to see a private endocrinologist. Cost about £220. Took my NHS blood results with me. He wrote to my GP telling them to prescribe which they then did because a consultant had told them too. I've had no problems since. I'd recommend it over a private GP because this way you don't then have to pay for your medication because once you are on levothyroxine you get an exemption certificate

I have no thyroid at all and feel terrible despite thyroxine and I get fobbed off all the time. Thyroxine must do something but it clearly does not make me feel energetic or refreshed. Can’t say I’ve every woken up feeling like I slept well or felt great
Fun!! Drs do not listen/care they increase Levo and fob you off. I can’t afford private so stuck in loop of feeling terrible being fat etc I hope you get somewhere op, I’ve had 40 years of feeling like crap they won’t refer to endo so stuck really.