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

[quote KidneyBeans]@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 [/quote]
I have been tested for celiac and it was negative, and also had a fecal calprotectin test to test for immflammatory bowel conditions which was negative too, so the diagnosis for bowel symptoms is now ibs.

The bowel issues are the only symptom I have which doesn't suggest hypothyroid, every other symptom does, and bloods are out of normal range, although 'subclinical'

I've done some reading and there seems yo be no real consensus on the benefits of treating when still subclinical so I think will keep getting blood tests and trying to increase my vitamin levels. It's just so depressing to feel so dreadful all the time. I accidently slept for 14 hours the other night (fell asleep at 8 30 and dp couldn't wake me up) and felt quite refreshed!

@sparemonitor

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.

Buy I do have symptoms of underactive thyroid.

Dessicated thyroid was the only treatment before levothyroxine was developed.

Symptoms such as what? Tiredness alone is almost never hypothyroid.

@sparemonitor

I have a lot of symptoms, some which seem to very strongly suggest hypothyroid. Or if anyone has any ideas what else it could be!?

Weight gain despite not eating more

Dry skin

Hair loss (haven't lost eyebrows but hair is thin around hairline and crown. Doctors dismiss this as my hair is curly so it's harder to see but I would say thickness has reduced about 25 percent over past few years.)

Non pitting edema in feet and ankles

Puffy face, puffy around eyes

Low body temp and feeling cold all the time

Exhaustion and very sleepy during day, problems with tasks such as driving

Excercise intolerance (I don't know what this is caused by, but in 2018 my fitness dropped off a cliff despite increasing excercise. I was doing around 5 - 6 hours mostly cardio a week but have had to cut this back as I was feeling extremely unwell after excercise)

Muscle weakness and muscle aches and pain with no obvious cause

Agonising cramps around my ribs, I get attacks of this à few times à week.

Hypoglycemia (have been tackling this with low gi foods and frequent small snacks but this hasn't worked so have to carry glucose tablets for if I crash)

Diahrrea (diagnosis of ibs, will try FODMAP diet)

Hypothyroidism causes constipation. For these symptoms to be thyroid related it'd be likely much more deranged bloods though clearly can't give personal medical advice.

@sparemonitor

Hypothyroidism causes constipation. For these symptoms to be thyroid related it'd be likely much more deranged bloods though clearly can't give personal medical advice.

But if I have IBS, my bowel habits aren't going to fit are they? Or do literally 100 percebt of people with hypothyroid have constipation?

@Gardentiger
Did you have a biopsy? Because it's perfectly possible to have coeliac disease and not have antibodies on the blood test.

I'm also aware from your posts that not all you signs are GI - it's why I suggested coeliac disease - it's an auto immune condition not a GI condition and causes a wide range of symptoms

Try the coeliac Uk online assessment www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/if-your-tests-are-negative/?&&type=rfst&set=true#cookie-widget

You may also want to look at lupus, fibromyalgia and cushings disease to see if any of those fit the bill - though I'd expect some changes to your blood results with cushings

Is he the only Gp at your practice. Make appointment with a different gp. Talk to the practice manager. No need to change gp practices just yet.

Actually scrub that @Gardentiger

You have all the signs of iodine deficiency

www.medicalnewstoday.com/articles/320891#signs-of-deficiency

It's common, often under diagnosed and would tie in with your high TSH (your body is desperately making more TSH in a bid to keep your thyroid levels normal despite low iodine levels)

I'd suggest starting iodine supplements (speak to your doc to get levels tested first)

www.nhs.uk/conditions/vitamins-and-minerals/iodine/

Could your symptoms fit in with graves?
I was referred to an amazing endocrinologist back in 2015 after years of weird symptoms.
It wasn’t until I went to my doctor for help with anxiety that she looked back over my records and saw strange results and said she thinks my thyroid needs a specialist

I ended up changing my diet massively when I realised what it was and found lots of foods that were supposed to help which seemed to make things more manageable

You sound so similar to me. I'm borderline hyperthyroidism. The GP said we'll continue to monitor it but they haven't. Sorry to hear you have IBS as well. I'm going through menopause atm which has made my IBS so much worse.

@sparemonitor that’s certainly not true in my case. I have subclinical hypothyroidism which was TSH of 8.5 and is now treated (by my GP) to TSH below 2 and have never had constipation in my life. I also have IBS though not often affected now thankfully.

@Cazzovuoi

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.

Same. I can feel fairly small upward jumps in TSH. I am another who spent years going back to the GP to be told my levels were fine, even though I didn’t feel fine, and half my family have thyroid disease. Your T4 is far too low, your TSH is too high, your ferritin at the bottom of the range and your B12 too. Change GP. You have antibodies, you are not going to feel any better without levothyroxine. You also need to up your iron and B12.

@sparemonitor I did have some symptoms that were helped - dry skin, my eyebrows are growing back and my feet are no longer ice blocks! By feel better I mean less exhausted but that's my other illnesses that cause that so.. I'm stuck with it
But my haematology consultant wanted my thyroid to be perfect as I have so many other things going on he didn't want that to cause any other issues, and the GP ended up prescribing as my T4 (I think) was plummeting

@Gardentiger I have TSH higher than yours and have never had constipation.

If your GP is refusing to move, at your age you could feasibly say you are thinking of having a baby. NICE states that in that case even subclinical hypothyroidism should be treated and in the normal range before conception. In fact it says you should be referred to endocrinology!

cks.nice.org.uk/topics/hypothyroidism/management/preconception-or-pregnant/

I was in a similar situation and ended up going private. I made sure I had recent blood results and took those with me and the consultant was able to use those to keep costs down. I made sure to pick a consultant who is sympathetic to medicating at a lower threshold.

Once he recommended medication and wrote to my GP they happily prescribed it as it is very hard for them to ignore a consultant's opinion.

It's ridiculous that it has to come to that though. It cost me about £250 a few years ago. I feel tonnes better medicated.

@sparemonitor I have looked up your previous posts and you say you are a GP, and I am actually flabbergasted. If you really are a GP, why are you stating things on this thread that are clearly untrue?

-"natural dessicated thyroid will do nothing but lighten your wallet" if you genuinely think this, I'm sorry but you need to do some more reading on the subject. Ndt contains t4 and t3 that are absorbed by the body. One of the reasons it isn't prescribed is due to the difficulty in telling how much of these active hormones are present in a dose, and differing opinions on t3 replacement in thyroid patients. There are many patients who take NDT that has been prescribed, as it seems there are a minority of doctors who will prescribe it.

-regarding my symptoms not indicating thyroid dysfunction - despite my bowel issues not fitting in the symptoms list, my blood test results of raised TSH, low T4 and raised antibodies present point towards thyroid dysfunction, which my GP does agree on. It is when treatment is indicated that is the issue I am having. Neither me or my GP doubt that there's is something going on with my thyroid. The conflict is that my GP wants to just monitor and see what it does, whereas I would rather try treatment to see if it helps. I don't know why you would come on this thread and state that it isn't my thyroid that's the issue unless you genuinely think that I have symptoms of something else and would like to suggest that?

I can't give individual medical advice but you might find this useful

quackwatch.org/related/armour/

@sparemonitor

Hypothyroidism causes constipation. For these symptoms to be thyroid related it'd be likely much more deranged bloods though clearly can't give personal medical advice.

Errrm no it doesn’t.

I have hypothyroidism. I’ve had it since I was 21. I’m 40 now. I’ve also had diarrhoea type IBS since I was 18. The sort of IBS where you’re out and then have the most horrendous stomach spasms and then have to rush to the toilet or you’ll literally poo yourself. I’ve had colonoscopies and endoscopes and stool tests galore and nothing. But I do have hypothyroidism.

Never, ever had constipation. Would be a joy if I had!

I do however, now have a lot of other autoimmune conditions. Once you have one you tend to get others - I have hypothyroidism (125mg thyroxine a day so not a tiny amount either), lupus, sjorgens, Addison’s, pituitary tumour issues, and also things like asthma and recurrent UTIs / recurrent oesophageal thrush. All these things developed about 15 years after my initial diagnosis of hypothyroidism.

[quote sparemonitor]I can't give individual medical advice but you might find this useful

quackwatch.org/related/armour/[/quote]
@sparemonitor And yet you have given medical advice on this thread, but suddenly stop as soon as you're questioned on it.

OP you sound really similar to me. I have hypothyroidism and it’s effectively treated with levothyroxine now but I still get periods of fatigue and the other symptoms you listed. It’s your ferritin- you need to get it to 50 or above. You can take ferrous sulphate tablets but they do make you constipated so if you find that really annoying then floradix is much kinder. I had to treat my iron levels for over 6 m but the difference in how I feel is life changing. Also note there are studies which suggest that ferritin levels of lower than 30 can inhibit ovulation so you’re less likely to conceive if that’s something you’re interested in doing. (You didn’t mention if you had normal periods or not)

I also don’t eat gluten bc it gives me eczema/little blisters, mouth ulcers and makes me really hungry and fat. Although there is no medical evidence, I suspect that my gluten intolerance is linked to my hypothyroidism and low iron. I had a celiac test and it was negative but never eat gluten bc I feel like absolute shit if I do.

Might be worth looking up the NICE guidelines. These are what dictate GPs' actions nowadays. At least you would then know what you are dealing with when you speak to GP.

I would not take iodine just incase you may have Hashimotos(autoimmune thyroid disease). Iodine makes this worse. Thyroid treatment here is absolutely shocking. Thyroid UK has an informative website. I definitely would not treat myself. Sadly, like millions of others in this country, you may have to go private. The trouble with thyroid illness is the blood tests can come back normal, but you still feel awful. You have my sympathy, it's a hellish condition.Regarding overactive thyroid Im afraid I don't know much and you really need to seek medical advice. I would try to find a private doctor who is sympathetic.Take care and I hope you get the help and support you need.

I am on 125 micrograms a day of levothyroxine and recognise a lot of what you are saying from the days I was 'borderline' and not being treated.

The feeling cold ALL THE TIME. Bowel issues. Hair loss, especially eyebrows. Itchy, scaly skin. Tired to the point of falling asleep on the sofa most afternoons.

Definitely see another GP. Explain how your symptoms are affecting you, and beg for the tablets. They will want you to have regular blood tests to keep an eye on your levels, I think I was every 8 weeks for the first year, started on 25mcg, then 50, then 75, then 100 then finally stablised on 125 and I feel so much better.

@sparemonitor I'm going to guess that you are a GP? The fact that you have dismissed NDT gives it away

NDT literally saved my life. After 8 years of NHS consultants and doctors prescribing increasing doses of levothyroxine, I was dangerously ill, bedridden and told I was at very high risk of thyroid coma.

I basically lost my entire 20's to hypothyroidism. Within 6 weeks of starting NDT I had normal levels and 14 years later I haven't looked back. Oh, I also have NDT prescribed by an NHS endocrinologist 😊

The fact that you are making such bold statements on here regarding the use of a very widely used medication is highly irresponsible, misleading and makes me worry for your patients