Results advice

[jodes86baldwin]

Just had my results back from the doctors she is happy with my results yet I'm still suffering with symptoms, cold, exhausted, palpitations, dry skin. Any advice would be appreciated she says these bloods are well in range and while they are like this she doesn't really want to mess with meds. I was first diagnosed last Sept been on 50th levo since then.

[Greenwall]

Hi

Push the symptoms!! They are supposed to diagnose / treat according to them (see below).

I presume GP has checked vitamin D3, plus ferritin and iron?

If ferritin is low you will struggle to convert the T4 to T3 useable energy.

You need your vitamin D level at 100 to be optimal. You need optimal results for your thyroid hormones to work sufficiently.

Your TSH needs to be below 1 to feel ok; and your T4 is still low.

Take in articles that support this, which you’ll find on Thyroid UK site, or other posts on this forum.

Also ask GP to consider the NICE guidelines, which they’re supposed to follow:

The NICE guidelines direct docs to the BNF (drug handbook).

evidence.nhs.uk/formulary/b...

Which states the following:

"ADULT over 18 years, initially 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication, adjusted in steps of 25–50 micrograms every 3–4 weeks according to response (usual maintenance dose 100–200 micrograms once daily); in cardiac disease, severe hypothyroidism, and patients over 50 years, initially 25 micrograms once daily, adjusted in steps of 25 micrograms every 4 weeks according to response (usual maintenance dose 50–200 micrograms once daily)"

Looking for a diagnosis? Several sources clearly state that signs and sympomts should be considered.

oxforddictionaries.com/defi...

The identification of the nature of an illness or other problem by examination of the symptoms

Oxford Reference Concise Medical Dictionary 3rd Ed. 1990; Oxford University Press, Oxford (old fashioned book edition, ie not web)

Diagnosis: The process of determining the nature of a disorder by considering the patient’s signs and symptoms, medical background, and – when necessary – results of lab tests and X-ray examinations.

Hope you get on correct dose soon.

[jodes86baldwin in reply to Greenwall]

She said she doesn't need to do vitamin d again as no one should be low this time of year. She has said it's stress related that I'm having palpitations

[SeasideSusie Remembering in reply to jodes86baldwin]

What tosh jodes86baldwin ! Let her tell that to someone severely deficient in Vit D and see if our measly bit of sunshine we get in our so called summers will push them up to an optimal level.

What was your Vit D level when tested? What supplement were you given (or purchased).

Have you had B12, ferritin and folate tested?

All these vits and mins need to be optimal for your thyroid hormone to work properly, but GPs don't seem to know that. We have to help ourselves get well. Yours seems to be happy to keep you ill.

[jodes86baldwin in reply to SeasideSusie]

I can't remember what my results where it was a few months ago now. I know she put me on a high dose of vitamin d when it was last tested. I don't know what I should do for the best to be honest. I'm still learning so much about all of this.

My biggest issue is my weight for all the diet and exercise I do I lose a pound a week if I'm lucky. They took me offs my contraception pill a few months ago because of my bmi I had to argue then to get them to do my bloods again.

I rang back this afternoon to ask her to up my meds she said she had spoken to another doctor who had also said I am in range so don't need up in cause I could end up with over active thyroid. This is where I put my foot down and said I know myself and my body I still have symptoms and I want to up my medication. Can anyone recommend any supplements for me to take as well I was thinking of getting myself some vit d supplements. I have heard kelp is meant to be good too

Really appreciate everyone's advice and comments but I do get so over whelmed by all the medical talk x

[SeasideSusie Remembering in reply to jodes86baldwin]

Hi jodes86baldwin First of all, forget the kelp. Kelp contains iodine and that is a very iffy thing to take. You need to know if you are iodine deficient and the only way to know is to get a test. Too much or too little iodine isn't good. Iodine is easily obtained from food anyway, a glass of milk and a yogurt provides most of what we need on a daily basis.

Likewise with supplements. Supplement any deficiencies, and you'll only know what deficiencies you have if you get tests.

Your GP can do tests if they are willing. If not it's easy enough to do with an at home fingerprick test from Blue Horizon. They come as part of their thyroid packages. One of the best is Thyroid Plus 11. You'll get full thyroid function tests including thyroid antibodies which will rule out (or in) autoimmune thyroiditis. You'll also get B12, Vit D, ferritin and folate.

Once you get results, posting them with reference ranges will mean members can point out your deficiencies and suggest supplements. It's no good supplementing if you don't need it, too much Vit D is not good, too much ferritin is not good. They need to be optimal for thyroid hormone to work but not over top of the range, apart from B12, that's not so much of a concern because any excess is pee'd out but again, if optimal then supplementing can be reduced to a maintenance dose or left off for a while.

As far as your weight is concerned, dieting and exercise is pointless until your are optimally treated for your thyroid. Once that is sorted your weight should sort itself out. Until then you're flogging a dead horse and wasting time and money.

I know it's a lot to take in, but the more you read then you'll find gradually bits sink in. We really do need to educate ourselves. Doctors are very good at saying everything is 'fine' or 'normal' even if our test result is just one point within range. It's not, as your thyroid tests prove. Optimal is what we must aim for and doctors don't seem to know this so we have to learn and help ourselves.

There are lots of members happy to help, so keep asking questions and we can make suggestions and give guidance. Don't let your doctor keep you ill.

[jodes86baldwin in reply to SeasideSusie]

Thank you so much for that. When I go back in six weeks for bloods I will ask that I have a full blood screening done as well as my tsh t4 and t3 levels then I will post on there. I worry about self testing I feel like I am over reacting as it is without doing home tests. I feel like they think I'm just there for the fun of it if that makes sense

[shaws Administrator]

I have just glimpsed at your results and the first thing I would say to you is 'CHANGE' your doctor or try and educate her.

She is ruining your life if you've been on 50mcg of levo since Sept last year. I am horrified as I think I've mentioned previously. Is she completely unaware of the damage under-treatment can cause? No is the answer. There is a reason we don't pay for other prescripts for any other illnesses in the Uk and that is because hypo is a serious all-embracing disease and her treatment to you can cause other more serious problems.

All I can say that the tuition of junior doctors is sadly lacking and it is the patient who bears the brunt. If she is 'happy' as you are in range, these blood tests are used for the "diagnosing" of patients, not to keep those with hypothyriodism somewhere within. She is totally ignoring any of your clinical symptoms and she thinks she's doing the right thing as she has been taught. The fact the importance of hypothyroidism hasn't been explained fully as I doubt the BTA know either.

You have two choices if she is stupid (ie knows nothing about treating hypothyroidism). (1) Take your health into your own hands or (2) educate her or change doctors.

First, make a new appointment to see her. Email [e-mail] and ask for a copy of Dr Toft's Pulse online article and post a copy to the surgery for her attention before your appointment and say you have been in contact with the NHS Choices for information on dysfunctions of the thyroid gland.

Highlight question 6 and the aim of thyroid hormone replacement is:-

Excerpt:

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added."

Dr Toft was President of the BTA before his retirement.

[puncturedbicycle]

Good to see t3 being tested at least.

I wonder if she sees your t3 result and thinks 'job done'. Your tsh is a bit high considering the other results. This is unusual as I understand it.

[108Optimist]

Your TSH is high, and your ft3 and ft4 are low. Yes you are symptomatic because you are still hypothyroid. You doc is treating within the range of their capacity. You will either need to get a doc that undertsand thyroid, employ a orivate integrative doctor, or self-treat/test like a lot of us. Good luck. I always felt nuts being told I was normal yet feeling eurgh and life slowing down and down. You are not nuts and I hope your doc hasnt made you feel that way x take care x

[jodes86baldwin]

Thank you i have rang her back she is bumping me up to 75mg so let's see if this helps

[greygoose]

Just being 'in range' is not the object of the exercise. The ranges are so broad, they can't be 'normal' from one end to the other. The level needs to be where you feel best. She should be aiming for a TSH of one or under; and FT4 in the top third of the range; and an FT3 in the top quarter. Then see how you feel and adjust accordingly.

[jodes86baldwin in reply to greygoose]

I said to her that I had been told that the 4.6 is still high in European guidelines and also it has risen a little since my last blood test. But she was adamant that I am in range an that using higher mediation may result in me becoming over active x

[greygoose in reply to jodes86baldwin]

No, it's physically impossible for your gland to become 'over-active'. You are hypo, thyroids don't just reverse themselves like that. You will always be hypo. But, you could become over-medicated, which is another thing entirely - she really is a bit daft, isn't she! lol

You have got a long way to go to become over-medicated. Your FT3 is a hair's breadth under mid-range. It would have to be over-range to cause a problem. You would know if you were over-medicated, and want to reduce, so tell her that you accept responsibility for any problems an increase might cause, but you want that increase!

[jodes86baldwin in reply to greygoose]

I told her I take full responsibility for the increase so as of the morning I will now be taking 75mg of levothyroxine she has given me 2 months worth and wants me to have another blood test in 6 weeks. Although today was her last day so no idea who I will be seeing in 6 weeks and the battles I will face. 😊

So fingers crossed I start to feel better. How long should it take for someone to notice a change? Or for them to get into my system and I feel a little normal

[greygoose in reply to jodes86baldwin]

Difficult to say. But you won't feel the full effect for six weeks.

Good luck with your new doctor!

[Pixielula in reply to jodes86baldwin]

Don't forget the golden rules for blood testing.... Earliest poss app no food or drink only water no thyroid meds for 24 hrs prior, you may already know this but someone else reading it may not. Last summer my GP reduced my meds so my THS went up to 4.92 she was pleased that I was now "fine" when I felt like death warmed over, I realised very quickly she had no idea what she was doing so put my dosage up myself and kept stum ....

[jodes86baldwin in reply to Pixielula]

Well my bloods were done at 6pm last Wednesday

[Pixielula in reply to jodes86baldwin]

So did you know about the first thing in the morning thing? THS is highest first thing it drops as the day goes on and after eating. As the only thing that matters to most Drs is your THS, it needs to be tested at its highest, when you have your next test book it in advance for first thing and follow the golden rules

[jodes86baldwin in reply to Pixielula]

I didn't know this but I will follow this for my next appointment in six weeks thank you

[Treepie in reply to jodes86baldwin]

I have usually asked the surgery for a note to ask the local hospital to take the blood.The hospital starts at 7.30 am and no need for an appointment.

[jodes86baldwin in reply to Treepie]

My local hospital is miles away and not practical when I've got 3 children in tow. I don't mind the doctors taking my bloods the nurse is also a sufferer and often sympathetic with me I like that she can empathise with meits the GPS I struggle with as jut feel fobbed off most of the time

[Treepie in reply to jodes86baldwin]

Then make sure you get the earliest possible appointment.