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[nuiq]

Hi this is my first post. I am so tired of all this. I feel the Drs are just not interested my results today TSH 4.12 and T4 16.8 last year TSH 2.74 and T4 20.9 but according to the Dr the labs function ranges are TSH 0.4 - 6 and T4 9 -24 so since I am still within those ranges they have refused to increase my levothyroxine. I have also requested a number of times to have my T3 tested but the answer is always that it is up to the lab if they think it is necessary. I have had an underactive thyroid about 12 -14 years now and had a hard time at the start with all the symptoms in 2010 my levothyroxine was increased to 100mg and by 2015 my TSH was 0.1 and T4 23.6 and I was feeling quite good except for the weight I had put on. In spite of my asking them not to they dropped my levothyroxine to 75 which I am still taking today and now I am back to the beginning, more weight gain of over 3 stone, tired all the time and sleeping whenever I sit down, sore joints, hoarse, difficulty swallowing. I have finally requested a copy of my results (didn't know until I joined here I could do that) and I'm thinking of getting a private test done

[Wildbird]

The reference range is for healthy people who are not hypothyroid. It is not appropriate for a doctor to use the lab range to refuse you an increase in Levo. Your T4 has fallen and your TSH has risen, demonstrating that your thyroid is struggling. Is it possible for you to see another doctor in the practice who takes your symptoms seriously? A treated hypothyroid patient should not have a TSH of 4.12., more like 1. I know that it’s hard, I have had to do this myself. Find a more sympathetic GP and request an increase.

[nuiq in reply to Wildbird]

Thank you but I have tried a couple of other Docs in the practice over the last 3 years and they all seem to have the same blinkered attitude, if the hospital laboratory they send the bloods to says my results are normal that is what they go by and that is what I am told, I am within the ranges. I have tried explaining but they seem to take it as a criticism and I can see them switching off.

[Wildbird in reply to nuiq]

I understand what you mean, it’s very undermining when they do it. I got one GP to take notice by making a chart of my tsh results over five years. She could see that they were swinging around all the time and that this does not happen in healthy people. It’s exhausting but we have to look out for ourselves where thyroid health is concerned.

[MoonDust11]

Hey, I am having the same problem. I cannot tell you how much an anti-inflammatory and gluten-free diet has helped me and decreased the symptoms I was having. I also found I did not tolerate eggs or tomatoes (plus any carbs in the morning) - I know it sounds odd but look to your diet to see if foods may be adding to your symptoms. Every little helps in this situation. Other things I found helped was taking short walks throughout the day (even when low energy just a walk around the block helped) and drinking bone broth. I am sorry I cannot help more. I am also new to this and found other's replies have helped me, and I am hoping this will help you and anyone else who may see your post.

[nuiq in reply to MoonDust11]

Thank you I will look but I have been on a constant diet for the last 10 years some of it gluten free some different clubs but last month at 71 I thought enough and gave up. Also after a not very successful hip op I'm not as active as I once was. Difficult though I still think oh I can't eat that it would be over 100 points.

[SlowDragon Administrator]

Print these out and take them in

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Request 25mcg dose increase in Levothyroxine as a three month "trial" if they continue to be unhelpful

Also request vitamin D, folate, ferritin and B12 are tested plus thyroid antibodies

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Come back with new post once you have results and ranges and members can advise on next steps

[nuiq in reply to SlowDragon]

Thank you for your help. I have emailed Dionne as suggested and I will take it into my Dr and see if it makes a difference. Unfortunately trying to get in to see a fully qualified Dr in

my practice is extremely difficult and last time it was a trainee I had to see who didn't seem to understand difficulty swallowing, neck swollen and a small lump and who eventually had to go fetch a Dr who found the lump and asked if I had any problem with my teeth. I despair.

[nuiq in reply to SlowDragon]

Thanks will do picking them up next week.

[silverfox7]

SlowDragon beat me to it but I was going to suggest that you look at the Thyroid Uk site who run this forum and and print out anything that helps and if your doctor still won't listen say you went to this site as it's recommended by NHS Choices for info on the thyroid gland!

[nuiq in reply to silverfox7]

Thank you I am doing just that I have already emailed Dionne as suggested. My practice seems to go with what the lab says and if they say the results are ok then it's ok. I understood the TSH range was 0.4 to 4.5 but they are saying it's 0.4 to 6 and when I questioned it they said that was the range in every lab.

[silverfox7 in reply to nuiq]

Ranges vary from lab to lab so you should always quote the ranges that came with your results. But they can vary quite a lot so the only way you can compare them is to work out where percentage wise each result is in each range. The top of my FT3 range is 5.7 which is lower than many others.

[SlowDragon Administrator in reply to nuiq]

The TSH range is only useful BEFORE someone is on Levothyroxine

Once on Levo we need TSH low in range, FT4 towards top of range and FT3 at least half way in range

For so say, well educated people, Doctors seem to lack common sense

TSH is the message telling Thyroid to work.

So if your thyroid doesn't work, you want this message not used much. So it should be LOW in range

FT4 measures the available amount of thyroid hormones available. Obviously this needs to be as good as possible, so it should be HIGH in range

FT3 measures how much FT4 is being converted to FT3. Important as there's often problems with poor conversion. Can be low vitamins or gluten intolerance or DNA issues like common DIO2 gene variation

Vitamins need testing at least annually

DIO2 gene test

thyroiduk.org.uk/tuk/testin...

[SlowDragon Administrator]

Email Thyroid UK for list of recommended thyroid specialists too

please email Dionne


[e-mail]

If after seeing GP again, with full results, if still no increase in Levothyroxine, you may need to ask for referral to NHS endocrinologist or see one privately

Would suspect you have low vitamin levels as well as high TSH

[nuiq in reply to SlowDragon]

Thanks. I have been taking a wide range of vitamin and mineral supplements + vit D spray, all of which I buy myself, for well over a year now so I was hoping everything would be ok in that respect.

[nuiq]

Thanks wish you would tell my Drs that I only ever get 2 results THS and free T4 but I am learning a lot after joining this website.

[Vicki60]

Thanks to finding this site I have just sent my blood sample to medichecks and am awaiting the results and will get back here to discuss them with people who understand and care ...ON HERE x