Could anyone advise me please if it is correct that under the NHS treatment cannot be given until TSH is over 10?

[fixit]

I have just seen my GP with a TSH of 3.5 free T4 of 11.3 (range 12-22) free T3 4 (range 3.1-6.8). I had these tests done privately as I have had many symptoms of hypothyroidism. She assured me that these symptoms could not be because of my thyroid as my TSH is well within range. She said that free T4 Is not used as a marker for treatment only TSH which could only be treated when over 10 on the NHS. Do I have a right to ask for a referral to an Endrocologist and would they be likely to treat or would I be better off looking for a private doctor?

[Moggie]

The NHS guidlines state 10 BUT many good doctors will treat when your TSH is below 10 if they also take symptoms into concideration.

Can you go and see another GP in the surgery as you may find another GP will have a totally different take on the situation. I would also be asking for my VitD, B12, irton, ferritin and folates to be tested as these can also cause thyroid like symptoms if they are low and you can use this as an argument if they say they will not test them.

I would be telling the GP that getting to the bottom of your symptoms is a priority and if they do not think they are thyroid related then further investigation need to be made to explain your symptoms. Kake a pest of yourself until you get want you want.

If they wont treat you for thyroid illness on those results I doubt very much if they will give you a referral to see an endo so maybe the private route, if you have lots of money to spare, is the option but not before you go back and ask for the above to be tested.

Moggie x

[alangardner]

ask your doctor if he/she IS A SPECIALIST IN THIS FIELD and when they state that they are not FORMALLY REQUEST THAT THEY REFER YOU TO SOMEONE THAT IS ---- to 'sort the problem out ' --- they have a duty of care for your health [ after all your gp cannot know everything about all ailments ] ,but , THEY have to give and allow the optimum treatment for every patient ..........if you are not happy with your treatment , under nhs guidelines YOU have the right to a 2nd opinion from a specialist in that particular field ....FACT .... hope this helps ....alan xx

[shaws Administrator]

I am afraid that the BTA guidelines did state that a TSH of 10 be reached before treatment but I cannot find it at present (I wonder if they have removed it). Some Endos/GP's will consider giving you levothyroxine due to your symptoms. In the USA a TSH of just above 3 will be treated.

That fact that you have clinical symptoms, the doctor, I think, should have given you a trial of levothyroxine but she obviously is adhering to the 10 figure before she will treat you.

These are some links:

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

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

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

You may have to go private initially, and if you email [e-mail] she has a list of private doctors.

[Hidden in reply to shaws]

Hi Shaws have you seen this?

Scroll down the link here, from the BMJ. Clearly shows that anyone with a TSH level over 5 with symptoms should be offered treatment with T4. bmj.com/content/337/bmj.a801

Liza

[shaws Administrator in reply to Hidden]

Thanks for the link.

Ideally that's how it should be but as in fixit's case it would appear that many GP's are unaware of this and the suffering continues.

[shaws Administrator]

This is an excerpt and read the whole article..

In this country recent suggestions, sadly approved by the British Thyroid Foundation and certain senior endocrinologists, have placed the cut-off point now at 10mU/L, well above previous levels of 4 or 5mU/L, which were far too high anyway.

The thinking behind these proposed guidelines is beyond rational explanation; and the amount of illness and suffering which will result is heartbreaking

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

[rosetrees]

(Disclaimer. My personal opinion here.) The tests are backwards. The NHS tests TSH first, T4 if TSH is out of range and FT3 only if their arm is twisted firmly.

TSH is produced by the pituitary. T4 is produced by the thyroid and is converted into T3. T3 is the active hormone the body uses.

Tests SHOULD be done in the reverse order:

FT3 should be tested first. This is the hormone your body uses and the hormone whose lack causes hypo symptoms.

If FT3 is low, then T4 should be measured. A high T4 but low T3 indicates a likely conversion problem. Low T4 and low FT3 indicates the thyroid is not producing enough T4.

This is the time to measure TSH. If TSH is relatively high then it is likely the patient has primary hypothyroidism.

If TSH is still low then it is likely the patient has secondary hypothyroidism.

Why doctors refuse to treat on symptoms is probably the main subject I shall be pursuing next year. My symptoms have blatantly screamed hypoT and hypoadrenal for nearly 40 years, yet until I became so ill I literally couldn't function, revolted and took charge of my own diagnosis and treatment I was offered no tests, no treatment and not even passing interest from doctors.

This is an international scandal and I, for one, am not going to let it rest.

[fixit in reply to rosetrees]

I agree with you. My GP said my thyroid could not be causing problems as my body would make more TSH if I had a problem. So although my free t4 is low in range it must be okay for me as otherwise my TSH would rise. She is a newly qualified GP so I guess this is what they are taught in medical college.

[rosetrees in reply to fixit]

I have a screenshot of some of the ridiculousness they are taught. It does, however, include the instruction that a patient with secondary hypothyroidism will have TSH low/low-normal, FT4 low. It's from the Pulse CPD module - your GP might like to read it.

[fixit]

Thank you all so much for your replies and very helpful info. I have ME so my GP is putting my symptoms down to that. I will see her again in the New Year to discuss further.

[rosetrees in reply to fixit]

Fixit. Please forgive me if I shout. You DO NOT have ME. There is no such thing. Your problems are due to your thyroid. (I've been ill for nearly 40 years - fobbed off with all sorts of dismissals. I finally found out last year that I have thyroid and adrenal problems - and always have had). Do not let your GP dismiss you - you need proper diagnosis and treatment. If your GP refuses to help you, PM me and I will tell you what I have learnt in case some of it is relevant to you.

[lilliput in reply to rosetrees]

For me I think CFS was Hashimotos. And I'm glad that I now have the blood test and meds.It is much better than no cure. It could be just one cause of CFS though. and it was much worse with no cure/ stress scenario plus no concrete evidence of being ill at work.CFS at that time was not taen seriously.

My instinct 20 years ago was hypo and I was right; I was also thinking Epson Barr, Lym disease. Still not sure that I am cured but I feel a bit vindicated. Early days may have to do it all over again if the Levo doesn't work. I know that blood tests are not important but this is an invisible illness as was CFS and the bloods prove it to employers.

[rosetrees in reply to lilliput]

Imho blood tests ARE important - sadly doctors are not taught how to interpret them correctly. As you say, they are good to prove to employers that you are ill - if the correct tests are done. For example, low TSH and low T4 shows that further tests should be done to measure other things produced by the pituitary. Sadly, doctors refuse to do a wide enough range of tests or spend time interpreting those tests.

CFS/ME - as you sadly know only too well - are invariably used as an excuse to do no further testing and offer no treatment. That cannot be a diagnosis - it's just a dismissal. I think the CFS/ME myth might well turn out to be the focus of my fight.

[Mini1 in reply to rosetrees]

I have been told by at least 3 GPs that I have cfs and will just have to learn to live with it. I don't agree!

[helvella Administrator]

I was diagnosed and started on levothyroxine at only the tiniest sliver over local reference range for TSH. (My TSH was only just over 5.)

My particular advantage was having a series of steadily rising TSH tests over quite a long time. And knowing something about the issues. Otherwise I would quite likely never have had a single TSH or thyroid hormone test. Ever.

Rod

[Hansaplatz]

I'm not sure that is true about TSH 10 = near comatose. My TSH values at diagnosis were just given as >100 so way out of range and who knows what the actual value was as the lab did not state it. I've definitely seen others on here confirming a similar experience, even people with TSH is the 1000s.

Don't get me wrong, I wasn't well when diagnosed, thought I had depression and agoraphobia, but neither was I bedridden, just struggling a lot to get up and do things a lot, barely managing my 20hr working week and nothing else doable really.

I have in fact felt much worse during the last two years, with possible complications like adrenals issues and vitamin deficiencies, despite my TSH only once being 10 for a few weeks. At that point I did feel like moving between rooms even was more energy than I wanted to expend, probably the closest to comatose I'd come with this but given I'd had a much higher TSH without being so bad in the past I'd just want to point out high TSH isn't the only factor and low T4 at that point was probably the key thing as to why.

I've often wondered if having such a high TSH was just because over a long time it spiraled up and up, that a high TSH could mainly be showing how long the body has been crying out for help there rather than simply severity of issues as seems to sometimes be assumed it means but I've never seen anything talking about the relevance of very high TSH results like I initially had.

[Hidden]

Hi Fixit

Scroll down the link here, from the BMJ. Clearly shows that anyone with a TSH level over 5 with symptoms should be offered treatment with T4.

bmj.com/content/337/bmj.a801

Also, make sure you're tested for TSH early morning - the level usually drops through the day and is lower later in the day.

Good luck

Liza

[Hidden in reply to Hidden]

Hi Liza. That link isn't working for me, anyone else not able to read it?

[helvella Administrator in reply to Hidden]

Try this:

bmj.com/content/337/bmj.a801

Rod

[Hidden in reply to helvella]

Sorry Cinnamon - thank you for noticing - must be more careful with cut & paste!Thanks Rod

xx

[Hidden in reply to Hidden]

No worries Liza!

[Hidden in reply to helvella]

Thank you Rod, most helpful.

[Hansaplatz]

I guess that goes to show everyone is so different that lab results and most GP's simplistic reading of them aren't nearly so important as symptoms showing.

I've never read much about the relevance of antibody levels either except that they use them to confirm autoimmune thyroid problem or not - the amount doesn't seem like doctors discuss as relevant, it being either you've got over range positive confirmation of autoimmune thyroiditus or not. Be curious to know if the level of antibodies is a cause or maybe even just a sign of severity of issues.

[Mini1]

Trouble is that there are no cfs / me experts! I have been under the cfs clinic for a year, but they haven't really helped me! They don't have a specialist just a physio and an OT. It's a joke! I'm sure my symptoms are thyroid related.....just got to convince GP . Thanks for taking the time to reply.

[marram]

In that case, I would not qualify. I have never had a TSH over 10 in my entire life since the age of 13 when I was first diagnosed with Graves' Disease. Now I am hypothyroid but my TSH has still never been above 10. So, theoretically, I have nothing wrong with my thyroid. My symptoms must be something else, then.

There is just one tiny flaw in that reasoning...I have had a TT and therefore have no thyroid!

How utterly ridiculous. And how utterly cruel and inhumane. My GP actually said to me that it does not matter how I feel so long as the numbers are fine. The numbers cannot lie.

[rosetrees]

Hi Londinium. Here it is aboutmy.me/?attachment_id=191 It's one page of a 9 question module. I have screenshots of the whole lot if you want to read the rest.

The original CPD module is here pulse-learning.co.uk/clinic...