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

If you can afford it and are worried I would pay to see a consultant on this issue. At least you would know if your readings are within the range for which treatment isn't recommended. How old are you. Some of these symptoms could be menopausal but the GP should hace considered that. Or some other issue causing the tiredness and bloating. Hope you get some answers.

I would just request referral to an endocrinologist and say you have symptoms you believe are thyroid related and want to see them.

A relatively cheap way to go private is to get an appointment with a local senior nhs endocrinologist privately. Ask their advice. Should be around £150 to £250 but ask the price upfront. Bloods would be in addition - could be another few hundred.

I saw an nhs endocrinologist privately and they then referred me into their nhs list. I got a prescription for thyroxine and that really helped me.

Do not self treat.

You don’t mention your age - any chance that you could be peri menopausal?

Have you had your calcium levels checked?

@Viviennemary

If you can afford it and are worried I would pay to see a consultant on this issue. At least you would know if your readings are within the range for which treatment isn't recommended. How old are you. Some of these symptoms could be menopausal but the GP should hace considered that. Or some other issue causing the tiredness and bloating. Hope you get some answers.

I'm 30 so I don't think it could be menopause.

Sadly I don't have the money now for a private consult. I will start saving for it if its the only way forward

I think you need a second opinion. I've been treated for years for subclinical levels, I get symptomatic very quickly if I'm not adequately replaced.

Several GP have confirmed to me in the past that they go on symptoms with subclinical results.

The British thyroid foundation leaflet says of symptoms then you may benefit from treatment for subclinical www.btf-thyroid.org/hypothyroidism-leaflet

Also look at the guidance here patient.info/doctor/subclinical-hypothyroidism

I think the issue is that they only have to consider treatment, and in this case the Gp is considering it and deciding not to. I will change GP, and I guess I will have to hope they decide to treat.

I've been through this before, had to wait till my tsh went to 50 🤦🏼‍♀️ I would keep changing gps till some one listens x

Are you taking iron tablets? I'd work on getting your ferriti levels up. Although within range, I get lots of thyroid type symptoms if my ferritin is that low

I'd change GP while also saving up to go private in case the next one also will only treat when out of NICE guidelines ranges. Do you have any idea why your B12, folate and ferritin are all at the bottom of the ranges? I've been told they need to be in good ranges to support the thyroid?

I'm taking supplements for all of them now. With iron, I think it may be as I have super heavy periods. I wonder if I may be deficient on things as I have constant diahrea, now diagnosed as ibs, so I wonder if I'm not absorbing n nutrients well as everything's just going straight through me. I've been referred to a dietitian to try a FODMAP diet

Thyroid support in the UK can be really patchy. I'm sorry you're experiencing this. Loads of us are in the same boat and many of us are self-treating as a result.

Your recent results strongly suggest hypothyroidism. You must be feeling awful. Many GPS now treat at TSH 4, and elsewhere a TSH over 2 is considered to indicate poorer thyroid function. You must be feeling awful.

First thing you should do is arm yourself with the latest thinking ahead of your August test, as he said he would consider treatment if those results tell same story. Be prepared to be fairly insistent in asking for treatment, even if its only on a trial basis to see if your symptoms reduce.

I'd be inclined to do this first as you're partway there. But then be prepared to switch to a new GP - ideally in a different practice as your current one may be following practice guidelines - if you still are no further forward in a month.

It can be soul-destroying trying to take on the medical establishment while running on drained batteries.

@onemoreforextra I think this GP is just not going to help sadly, as I did ask what he'd do if my August result is very similar and he said he wouldn't treat it.

I do feel dreadful, which the Gp doesn't seem to understand! It makes it hard to be insistent and pro active when I feel so awful, but it sounds like I will have to be to actually get any treatment

Sorry, I read it as he would check again and might. I absolutely get how helpless and awful this is.

In that case the mainstream options are to ask to be referred to an endocrinologist,

• but that's likely to have a considerable wait - or change GP. You could even ask the receptionists whether the practice has a policy against treating subclinical hypothyroidism before you do, to avoid going through all this again.

But what you're experiencing is far from uncommon. I've done a version of this myself, and would have lost my livelihood if I'd just accepted the non-treatment and stayed hypo. I've ended up self-treating using private tests from Medichecks and NDT from Thailand as I was barely functioning with better TSH/T4 levels than yours. While I'm certainly not advocating this for anyone else, I do advocate becoming your own expert. No problems in my life have ever been solved via any other route. So I know its hard when you're exhausted and brain fogged, but do read up as much as you can and take your next decisions as an active participant in your own health.

Have you researched Iodine and it's role with the thyroid?. Iodine deficiency has some major side effects. A lot of supplements do not have iodine in them, as too much is a bad thing. Maybe try increasing this for a month or two, see how you feel then?

is it a group practice, if so, try all the docs in the practice.
are you a vegetarian; some of your levels suggest you might be missing something from your diet ?
it's strange about the thyroid issue.
i changed GPs for unrelated issue.
my previous excellent teaching GP retired. she had commented that my thyroid level were towards the low end, but that seemed to be normal for me, as didn't have symptoms of lack.
she had known me for yonks, and taught doctors to be GPs, so i trusted her view.
new GP said i should have thyroxine.
but i was not keen. i was very tired, but i was doing 24/7 total care for disabled relative, so no surprise there.
my hair is often commented on as strong and thick for my age by hairdressers. a bit flabby, but age, laziness covers that.
anyway i have resisted having thyroxine and now the GPs seem a bit distant with me about any other issue, as if i am a difficult patient.
one doc even suggested that i accept the script for thyroxine but not actually take it. that sounded risky to me. i said no, as it would give the wrong impression, tht i was taking it when in fact i never had, and i'd rather be honest.
i got the feeling that she'd rather i was not . !
do they get a premium for prescribing it ?

Your ferritin is quite low. You say you're taking iron, I wonder if you could use a more powerful supplement? Spatone, for example, is very popular because it doesn't upset people's stomachs, but it is quite low in iron. Also, when you take it, ensure it's not with anything else that causes absorption issues - nothing with tannins (e.g. tea) or dairy products.

The GP didn't treat my thyroid when my TSH was 7ish. 2 years later, I had some very obvious symptoms and a TSH of 98 They're treating it now...

If you were TTC, OP, your TSH would have to be lower than 2.5 to not reduce fertility.......

I had this exact same issue. Saw an endocrinologist via Bupa, who wrote to my GP and told him to treat me. Positive antibodies aren’t going anywhere, you have autoimmune thyroid disease (mine were in the thousands and GP still wouldn’t treat 🙄)

I was also willing and prepared to self treat. If you join Thyroid Patient Advocacy forum, they will help guide you.

Look into Simply Health (or similar) cover which will allow you access to an online GP appointment. Ask them for a referral letter to a private consultant - take out a policy which covers some/all of a diagnostic consultant fee. Then if they give you a diagnosis see if you can be referred to the NHS for treatment.

Some policies start at only a few quid a month and cover you for dentist, optician etc as well.

What time have you been having your Thyroid Function blood tests?
It's really important to have them early morning, as TSH is naturally highest then. TSH fluctuates throughout the day.

Also have you been tested for coeliac disease? Just wondering as you mention bowel issues and your ferritin is a bit low. Can go hand in hand with thyroid issues.

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