In a perfect world I'd get 100% perfect treatment. - Thyroid UK

Thyroid UK

137,936 members161,765 posts

In a perfect world I'd get 100% perfect treatment.

edde profile image
edde
7 Replies

Instead, my GP is treating my hypothyroid problem with levothyroxine, plans to do a tsh blood test every 2mths, tells me it takes time to find the right dosage.

He does not investigate further into my Hashimotos because my scan doesn't show any nodules even though my blood test indicates I do have Hashimotos. He tells me he knows nothing about prescribing T3 meds and prescribes levothyroxine for ALL of his hypothyroid patients. He doesn't think that doing other tests such as vit D, B12, calcium, T4, T3 is of importance.

I feel like I'm supposed to fit into a box, like all his other patients and just wait until I start to feel better.

I feel angry that I'm treated like a paranoid, over-researching sicko.

I feel unsupported.

I can't seem to find a better doctor - one who'll do all the relevant tests and give me info on nutrition etc.

I'm weary.

I don't have to energy to fight.

Moan over!

Written by
edde profile image
edde
To view profiles and participate in discussions please or .
Read more about...
7 Replies
Rapunzel profile image
Rapunzel

edde all the things your doctor tells you are correct. It does take time, there is no magic bullet. At least your doctotr is monitoring you - mine gave me 50mcg levo and that was the end of the matter as I was 'only' borderline according to the holy miracle of the TSH.

With this condition you have to learn patience. It may take a couple of months or more for your levels to pick up, once you're optimally medicated. I have read that 80% of us get better on levo alone.

I hope you feel better soon :)

Treepie profile image
Treepie

Your GP is right in that it can take a long time to get right .It was over a year for me.Over 80% do fine on levothyroxine. The NHS is glued to only texting TSH - so not just your doctor. You can have Hashimotos without nodules .

He is wrong on all else.

NatChap profile image
NatChap

Yes it takes time to find correct dosage and you may be one of the lucky ones who does well on Levo but the other tests you mention are vitally important If you aren't happy can you get a referral to an endocrinologist? Failing that there are several companies that do private testing x

NatChap profile image
NatChap in reply to NatChap

However I should add that initially I was only given TSH test and it was only after about 6/7 months ish and 2 dose increases that I was given other tests so don't be too disheartened yet. I am pretty certain that there will come a point though where you will have to take matters into your own hands but in the mean time research, research, research and if you don't feel better despite tests being within range, don't let them fob you off x

edde profile image
edde

the endo I saw gave the initial levo prescription when my GP was telling me it was exhaustion and my results show I'd no hypo problem. However my endo does not think further tests are necessary. also my GP tells me that doing a scintigram is only for hyperthyroid patients.

Clutter profile image
Clutter

Edde, it can take months to optimise Levothyroxine dose and symptoms may then lag behind good biochemistry by several months. The scan has determined you don't have nodules. Hashi damage may not be evident on ultrasound scan but elevated antibodies confirm Hashimoto's. Scintography with radioactive tracer is to test for iodine uptake in hyperthyroid patients.

Doctors don't take much account of Hasimoto's, probably because autoimmune diseases aren't treatable and they only treat the symptoms and illness it causes. Doctors aren't trained about nutrition so don't expect help there. Perceived wisdom is that gliadin in gluten may trigger autoimmune diseases so adopting 100% gluten-free diet may help reduce Hashi symptom and antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

If you aren't able to persuade your GP to order the tests you would like done you can order them privately via thyroiduk.org.uk/tuk/testin...

_______________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

TupennyRush profile image
TupennyRush

hiya

Ok - according to the Thyroid UK survey only around 12.5% of patients need to go down the T3/NDT route and odds are that you're in the majority that gets well on levo alone. However one of the indicators that will tell you whether or not this is true is the test for the DI02 gene (you have to pay for it - available from Thyroid UK website)

I spent a year on levo and felt much better than I had but not right. It took another year on NDT before I was back to being me. Whatever you take it will take a year or so to get back to normal especially if you've not been diagnosed for a while.

But, if you can afford it take the test and if you are positive for the gene then you know whether you need to fight for T3/NDT treatment.

Sorry for the bad news but it does take a long time to come back from this.

You may also like...

The importance of getting serum ferritin above 100 µg/l for hypothyroid patients

persistence in patients treated for hypothyroidism in 5–10 % of whom symptoms remain despite being...

Welcome to the real world

guidelines tell him. But I don't totally agree that I'm a hypochondriac imagining feeling weak,...

Worlds worst endocrinologist

normal. To add insult to injury he said Levothyroxine doesn't have side effects so that is also all...

Getting GP to prescribe T3

the time my GP wouldn't prescribe even though she acknowledged that other patients dervived benefit...

Nasty feeling and wonder if anyone in the world gets this.

makes you to feel like arc your back like a cat to get the muscles to function again and I find i...