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

Sound like classic hypothyroid symptoms bc and your TSH is too high i'd change doctor

well i'm cert not constipated, quite the opposite.
so that's another non-symptom i've got.
wonder why my GP wants me to have thyroxine while i don't,
yet OP's GP refuses it when sypmtoms and levels indicate it's needed.
such variation in GPs.
mine also refuse to visit bed-bound patient with multiple complex medical issues.
i know many are excellent. and most are over worked, under resourced. but it's so puzzling for the patient.

@alexdgr8

well i'm cert not constipated, quite the opposite. so that's another non-symptom i've got. wonder why my GP wants me to have thyroxine while i don't, yet OP's GP refuses it when sypmtoms and levels indicate it's needed. such variation in GPs. mine also refuse to visit bed-bound patient with multiple complex medical issues. i know many are excellent. and most are over worked, under resourced. but it's so puzzling for the patient.

It is confusing isn't it! It seems like different surgeries must have different policies about prescribing thyroid medication. It's frustrating, as you expect them as doctors to be diagnosing and prescribing based on knowledge and medical opinion on symptoms rather than arbitrary cut off points on blood tests. It sounds mad that they are pushing you to take medication even though you don't feel symptomatic!

@Feetupteashot

Hypothyroidism tends to cause constipation not diarrhea. So your doc maybe extra reluctant start thyroxine because of your other symptoms. Plus possible iron deficiency would be safer than giving thyroxine which can cause heart rhythm problems associated a ted with stroke if overreplaced.

Guess you need to discuss again with your gp

They have diagnosed me with irritable bowl syndrome now, so I think the diahrea is a separate issue going on to the thyroid issue. It might indeed be why he is reluctant though. I think one of the issues is its all over the phone, so he doesn't have a full idea if the symptoms, like my puffy face and legs are classic hypothyroid

Seriously consider asking to be screened for coeliac especially with thyroid and ibs symptoms. Do not stop eating gluten until you have the test. Hope you get answers and are listened to. Definitely ask for a second opinion

I was medicated at 7.5 as I took the NICE guidelines and they retested and found antibodies as well. I did have to really, really push and they gave me 25 of levo
I'm now on 75, TSH 1.2 and I don't feel any different to be honest

@readysteady

Seriously consider asking to be screened for coeliac especially with thyroid and ibs symptoms. Do not stop eating gluten until you have the test. Hope you get answers and are listened to. Definitely ask for a second opinion

I had a coeliac test and it was negative. I was reading that it's possible to be non coeliac gluten intolérant, so I am going to try cutting it out to see what happens

@NotMyCat

I was medicated at 7.5 as I took the NICE guidelines and they retested and found antibodies as well. I did have to really, really push and they gave me 25 of levo I'm now on 75, TSH 1.2 and I don't feel any different to be honest

Oh no, that's dissapointing that it hasn't helped! Reading online, some people switch to natural dessicated thyroid because of this.

It's so frustrating to have something that seems difficult to get diagnosed with and difficult to treat. I would think its an area of medicine ripe for research, but as it affects more women than men I won't hold out much hope!

If it hasn't been mentioned yet, the thyroid forum on the healthunlocked website is an excellent source of info. Many people are forced to self diagnose and treat I'm afraid due to unrealistic NHS guidelines

With thyroxine it very much depends on getting the level right. Gp would only give me 25. I felt no better. Endo gave me 125 I think iirc and it was transformative.

When I was first diagnosed with an under active thyroid around 15 years ago , I was started on 25 thyroxine and tested every 4-6 weeks with the amount adjusting up as time progressed , finally reaching 300 per day , but this has been reduced down again over time to 175, it's quite a lot of trial and error erring on the lower amount and gradually increasing, as my thyroid still works but not as well as it could ( like most people with an under active one) he wanted the thyroxine to help rather than take over the function of my thyroid

This could have been me fifteen years ago. The UK has the widest reference range for “normal” thyroid function in Europe and an underactive thyroid is much more common than statistics suggest. I went private and it is the best thing I did. I was put on supplements and Thyroxine. I was then able to get Thyroxine on an NHS prescription and this is free of charge.

Private doctors will tend to do whatever you want as you are paying.

The evidence is not clear as per this excellent resource www.cochrane.org/CD003419/ENDOC_thyroid-hormone-replacement-for-subclinical-hypothyroidism

[quote Feetupteashot]Private doctors will tend to do whatever you want as you are paying.

The evidence is not clear as per this excellent resource www.cochrane.org/CD003419/ENDOC_thyroid-hormone-replacement-for-subclinical-hypothyroidism[/quote]
How do they define subclinical hypothyroid for this study? Its confusing because parameters for what is normal thyroid function seem to be wider in the UK than a lot if other countries, so even if um sub clinical here I wouldn't be in Germany for example

If my TSH goes over 2 I am wiped. I cannot believe with a TSH of 7.5 your doc won’t medicate you.

Second opinion for sure and get off all grains and cereals to see if that helps the antibodies.

@Feetupteashot

I don't think that is quite accurate!

Private doctors in the UK are predominantly also NHS doctors and very competent and governed by the same clinical care standards as in the NHS. They won't recommend unsuitable treatment just because you ask for it!

What they can do is give treatment which is effective and suitable for you but which NHS guidelines don't allow because of financial constraints.

@OnGoldenPondyes but they might interpret the guidance more in your favor.

@Gardentiger the cochrane study definition was "Subclinical hypothyroidism is defined as an elevated serum thyroid-stimulating hormone (TSH) level with normal free thyroid hormones values." Sp local lab defined I guess. A sub group looked at tsh cut off of 10

I thankfully was put on medication but have also found going gluten free to be a life changer. My have stopped crashing all the time, I no longer get a skin rash I used to get on my hands and my stomach is much happier. I didn't even realise the gluten was causing this until I stopped. Appreciate the last two may not be related to thyroid but the tiredness and crashing out was and is so much better.

Have they looked into endometriosis as it sounds extremely similar to my experience. Especially the IBS and exhaustion

@NotMyCat

I was medicated at 7.5 as I took the NICE guidelines and they retested and found antibodies as well. I did have to really, really push and they gave me 25 of levo I'm now on 75, TSH 1.2 and I don't feel any different to be honest

I got diagnosed with Hashimoto's thyroiditis when I was 22. Initially prescribed 100mcgs daily, but now years later on 50mcgs daily. I still feel as rubbish today as I did back then (16 years ago).

This is outrageous and disgusting. I'm furious for you.
Thyroxine is cheap and safe. Why hold back on treating you?
If you have antibodies it's probably Hashimoto's, which will only get worse.
I don't think my iron was much different to yours when I had an infusion.
Find another GP. You deserve to get treatment that gives your life back.
I remember how I felt before I was diagnosed. No one should be left in that state.

Treatment isn't indicated here unless the TSH is over 10 or you have symptoms that are clearly of hypothyroidism - so on the info given your GP is correct. All GPs have patients that they would like to see move to another practice......

oh and dessicated thyroid will do nothing but lighten your wallet. Don't fall for it.

@NotMyCat

I was medicated at 7.5 as I took the NICE guidelines and they retested and found antibodies as well. I did have to really, really push and they gave me 25 of levo I'm now on 75, TSH 1.2 and I don't feel any different to be honest

exactly. That's what happens when you treat a condition that isn't causing problems. The treatment doesn't work.

@Gardentiger

Have you considered other causes for your symptoms - for example coeliac disease would cause the range of symptoms you describe - has this been investigated?
It is also associated with other immune mediated conditions such as thyroid dysfunction due to antibody production

I'd be cautious of pursuing a specific treatment when you don't fit the clinical picture and fall outside of evidence-based treatment guidance

Many GP's seem so reluctant to prescribe levothyroxine. I was diagnosed after birth of 3rd child and I put on more weight after his birth than when I was pregnant yet not eating excessively. Put on 25 then blood test after another 3 months then increased to 50, all this time putting on weight and feeling shit. So tired I kept falling asleep, swollen ankles, puffy face, constipated, dry eyes and skin. Tested again 4 months later put up to 75 then after another stone and 3 mo this later 100. I was still feeling awful. Thyroid level should be between 10-20 mine was 10.2 so told now I was in normal band it would not be increased any more. I continued to put on weight albeit more slowly. Before 3rd child born I was size 12 after Thyroid packed up moved to 16-18. Feeling so depressed and Ill still. I had to live on strict diet just not to put on more weight. Never lost the weight I put on never regained my energy. As I went through menopause it got far worse. Constipation so bad it would not come out for 5 or 6 days. GP retested bloods and now down to 8. Gave me 125 thyroxine then retested 7 months later then 150. By this time weight increased and now size 22. Still restricting my food intake. If I had not putyself on low calorie diet and lived on it very strictly O would probably be size 26-28 by now. Throughout this I have been asking for referral to endocrinology but refused. My GP retired and new GP retested bloods and raised me up to 175 and is referring to endocrinology. I have finally stopped putting on weight but I still have not lost previous weight. Now been waiting for endocrinology for 1 1/2 years due to pandemic but at least on waiting list. Every time my appointment comes up hospital cancel it due to pandemic. I feel like I lost my life after birth of 3rd child 25 years ago.