New Community member: Doctor's appointment - Gu... - Thyroid UK

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New Community member: Doctor's appointment - Guidance & help needed

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9 years ago•7 Replies

Hello everyone, I am new to this site and am hoping you can give me some answers/guidance before I see my doctor on Monday about getting some tests done. This is a long post so please go with me!

I believe I have had symptoms of an underactive Thyroid for well over 8 years and every time I have been to see a GP, have come away feeling dismissed and not taken seriously. The one time I did have a test done, I was told I fell within 'normal' range but was not given any further information - the doctor got quite cross with me when I asked where on their 'range' I was. Following that I paid for a private test - was told the relationship between my Pituitary and Thyroid was similar to an orchestra playing but not following the conductor. Basically things were not right. I stupidly didn't take the result to the doctors simply because of the history re lack of action and concern.

My last visit to the doctor was about 13 months ago and I took the opportunity to discuss my thinning hair (again) and possible link to thyroid; was told it couldn't possibly be that and no test offered to find out what might be the cause. A month ago I visited my mother and sister who both commented on the lack of hair on my head and had I been to the doctor. Grrrr!! My mother was diagnosed with an underactive thyroid about 20 years ago and my sister about 2 years ago.

I have an appointment on Monday and would like to be better prepared. I have tried to read up on things but find it hard to get my head around all the science. But am going to ask for a full Thryroid test, including T4 and T3.

Would you recommend I take the results of my 6 year old test with me and can anyone give me a clear, simple explanation of the parts within and what it means - see attached photo? Do you have any suggestions about what I say to the doctor based on this? Are things likely to have changed since then?

There was a second page which I couldn't upload here. If you can imagine a flow chart, it has two parts: the Central Regulation made up of a box marked Pituitary at the top with TSH showing 0.4 in lower red area. Below that is a box under the heading Thyroid Gland and a green figure of 14.3 FreeT4 and small amounts of T3. Next to that are two boxes under the title Auto Immunity; Anti TPO Antibody of 10 and TG Antibody of 20 (both in the green zone). The flow chart then divides in to Peripheral Regulations and two arrows; one to the left and one to the right. The left arrow is 5'Deiodinase Se Dependent leading to Free T3 Most Active at 2.7(red) and the right is 5 Deiodinase Reverse T3 Inactive (no number). At the bottom of the page, under both, it sayss T2 Inactive. I don't know if that will make sense to anyone but am happy to email it if you want to see it!! Don't know what 'T2 ' is.

The other thing I am going to ask is for a full hormone test. I am nearly 50 and pretty much heading into the menopause too. Should I ask for specific things to be tested rather than a generic test? I know some symptoms of the menopause are similar to underactive thyroid so this might be tricky. Any advice?

I have realised that GP's are a mixed lot and I am not sure I hold out much hope. But I just want to feel more confident about what it is I am asking for and having something to back me up. any help and advice will be gratefully received! Thank you.

Nikki

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7 Replies

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Treepie9 years ago

I hope someone more knowledgeable will come along but from my limited knowledge it looks as though your T3 and T4 are far too low .They should be in the top quarter with a TSH that you have.T3 is the active hormone at cellular that T4 produced by the thyroid changes to in the body . T2 and T1 are produced by the thyroid but there seems to be no understanding of what they do.The thyroid also produces calcitonin.

It may be that your pituitary is not working properly.See earlier post by mbarber with link to Chris Kresser.

Why this is the case when your TSH is the level it is I have no idea.I think you should ask to see an endocrinologist.

Standard treatment is with synthetic T4 which assumes good conversion to T3 .T2,T1 and calcitonin are ignored! This is why many sufferers take Natural Dessicated Thyroid from pigs or cattle as it contains all that the thyroid produces although not in human proportions nor necessarily in standardised amounts.

• in reply toTreepie9 years ago

Thank you Treepie! I will check out the post you suggested and your help is much appreciated.

jimh1119 years ago

I would take the old thyoid test results with you as they were unusual. Ask your doctor for a new thyroid blood test to assay TSH, fT3, fT4. Going from the above test results your TSH and fT3 are low the fT4 is OK. This profile can happen if the pituitary is failing a little (can occur after a car accident) or more commonly if the patient suffers from depression or is on a very strict low calorie diet. It also occurs in what is called 'Non-Thyroidal Illness' NTI. That is some other illness that upsets the thyroid system. If your new results show low TSH, low fT3 and low or normal fT4 then ask quite firmly for an endocrinologist referral.

• in reply tojimh1119 years ago

Hi Jimh111, thank you so much for your comments and thoughts. Will see what happens on Monday!

LAHs9 years ago

This sounds like a classic case for changing doctors ASAP. Many of us here have had to do this, if that gives you any idea of how may stupid docs there are out there. I am not sure how much education is offered at medical school on the endocrinology system but even those who specialize in Endo only seem to get about one semester (term) of it and then they do not read around the subject. If this gives you any idea of the lengths some of us have to go to, I have an appointment tomorrow morning at 11:30 am with my 4th Endo in a doctor's office 200 miles away. I will have to get up at 6:00am and drive for 3 hours. Each time I get a new doc I progress a little bit and I am now doing quite well. It sounds as if you have landed a stupid, uneducated one, remove yourself from this frustration ASAP.

• in reply toLAHs9 years ago

Hi LAHs, thanks very much for your response. Looking through the posts it seems there are a lot of people who are struggling to find the right help and the doctors who understand the issues and mechanics behind it all. I have heard from a friend that here in the UK, the NHS are routinely refusing to test Free T4 and T3 due to high costs of tests - who's to say?! I will reserve judgement on the doctor I am seeing on Monday - she is not the one I saw a year ago so there is hope! I hope your appointment goes well and that you keep making progress.

9 years ago

UPDATE ON DOCTOR's VISIT: So I sat down with the doctor and went through everything - well as much as could remember within the time allocated, and probably not in a very rational way. But I have to say she was very good about listening, looked at the test results I had and compared them to the results on file and looked at the little bag of hair that had been collected over the past 2 weeks after washing and combing. (weird but wanted to prove to her it is falling out very easily at the moment). The upshot is she is going to request a new Thyroid test (TSH ), and blood test for HbA1C , FBC, a liver and kidney profile and Vitamin D. I can't remember which T number they don't routinely test for here unless the bloods throw up something unusual.

I also asked for hormone tests but was told no due to being menopausal.

I have my bloods taken next Wednesday and it will take a week to get results back.

She was open about looking at my records and sharing information with me and said that the thyroid test was a start to finding out what might be going on and take it from there. I feel relieved I was not dismissed outright and was proud of not bursting into tears with frustration! Your help certainly helped give me confidence so thank you and I know there will be further help if I need it.