Is this what my GP sees?

[traceytired]

No wonder I'm bashing my head against a brick wall when asking GP for combination therapy and/or NDT.

I hadn't realised the NICE rules were so prescriptive:

cks.nice.org.uk/hypothyroid...

[marram]

Oh, yes. It is absolutely disgusting. They will be AFRAID to give T3 in most cases, though actually T3 is licensed for use.

[traceytired in reply to marram]

I wondered why mine was so adamant that he could not prescribe, and told me to keep buying it if I felt it made me feel better. He won't test T3 either.

[marram in reply to traceytired]

My GP phoned me one evening after I told him I was taking it and said I was 'A stupid woman who will kill herself'.

Having had the wonderful experience of having several mini-strokes after he reduced my Levothyroxine by a third from 150 to 100, I felt I had more to fear from him than Dr BDP and T3!

[traceytired in reply to marram]

I'm glad my GP was accepting of my decision to "go it alone" with the T3. He was most surprised that my TSH and FT4 readings were within range....I think he rather expected to be saying "look, your results prove that you should not be taking T3". When the results were OK he sort of caved. His final words to me were "the cost of your T3 is very small compared to the obvious improvements in your health. Good luck with Mexico!".

[Muffy in reply to marram]

Did you ask your GP for medical research papers that proved you would kill yourself by taking T3?

[galathea]

The goal of the treatment, according to the NICE link you provided is to relieve symptoms. If you need the t3, then no amount of t4 on its own will relieve symptoms.

Wonder how they get round that one?

[shaws in reply to galathea]

Would it not be more appropriate if the phrase was to 'eradicate symptoms'.

[traceytired in reply to shaws]

A major about turn would be required for that!! Will it happen in my lifetime? I sincerely hope so.

[shaws in reply to traceytired]

I doubt it. The pharmaceutical companies are very powerful particularly in the USA and make lots of money by supplying millions of packets of levo plus the never-ending blood tests. Not forgetting the 'extras' which the patient is prescribed for the continuing 'clinical symptoms'. The guidelines nowadays is that the TSH is the 'exquisite' test upon which the diagnosis is made and medication adjusted according to it. It was about ten years after these blood tests were introduced that 'new' diseases were finally named: CFS/Fibro/ME.

The 'old fashioned way' was to LOOK at your patient (were there facial changes, unexplained weight gain, oedema, etc etc), take note of patient's history, knowledge of clinical symptoms and at least a trial of NDT. Your dose was increased gradually till your symptoms went.

Present day they appear to not believe (or don't know) that if Untreated/undertreated - we can develop other more serious diseases so we are on a merry-go-round of specialists.

Dr Skinner, Dr Peatfield and other doctors trained in the same period or holistic doctors nowadays would use the TSH only as a tool not a diagnostic one. Dr Peatfield resigned his medical licence due to intimidation for prescribing NDT according to the patients symptoms and Dr Skinner was hounded for prescribing NDT and also treating symptoms. He stated in the World Thyroid Registry that the rules of treatment were parlous for many patients worldwide.

[traceytired in reply to shaws]

It really is a truly awful system. I have a wonderful free prescription card because I have no thyroid and yet I have to buy my treatment from overseas pharmacies, and trust to luck that I'm getting it right. My daughter cannot get diagnosed, yet she is suffering the same way I did for 30 years before my thyroid was removed, so I am going it alone for her too. Nightmare.

[shaws in reply to traceytired]

Yes, Tracey - it is a nightmare.

[marram in reply to traceytired]

I have had no thyroid for 33 years. Yet my doctor won't give me T3. When I asked him if it is to do with the price, he denied it and said he 'would prescribe T3 to anyone who needed it'. Now, If I, with no thyroid, don't need it, then the question is, who would?

[traceytired in reply to marram]

Agree wholeheartedly. A fellow "no thyroid" sufferer here. I'm so glad we have this site, each other, and the internet! Xx

[humanbean in reply to shaws]

That word "exquisite" used in connection with the TSH test makes me feel the same way as I do if I hear fingernails scraping down a blackboard.

[traceytired in reply to humanbean]

I didn't even notice the word exquisite!! I'm too angry about the whole situation. Now you've pointed it out, I feel the same. xx

[Clutter in reply to humanbean]

Cover your ears, Humanbean the TSH test is also described as exquisitely sensitive bleurgh!

[Clutter]

My registrar GP told me the local CCG had instructed GP practices that they should not prescribe T3. Endo prescribed it after seeing the improvement in my health when I self medicated. One of the improvements being my under range FT3 rising to the top 75% of range we consider is 'ideal'. The GP practice does provide repeat prescriptions.

[traceytired in reply to Clutter]

You are very fortunate. I can't even get an endo referral because my TSH & T4 are "optimal", so I am obviously "well". Complaints about pain resulted in a referral to a rheumatologist with a diagnosis of joint hyper mobility syndrome (that made me laugh!! - I was expecting the classic fibromyalgia diagnosis). Muscle pain and sleep disturbance resulted in prescription for Amitryptoline! Fuzzy brain...stress. Headaches and visual disturbances...stress. And the list goes on!!

[Clutter in reply to traceytired]

I didn't feel at all fortunate during the 6 months prior to hemi-lobectomy when I had spiralling Hashi's and no meds because my TFTs were normal; or when I got the thyCa diagnosis and waited 3 months, still without meds, for completion thyroidectomy. I wasn't at all fortunate to be so over replaced with Levothyroxine that I felt poisoned and became mostly bedridden for 18 months until I started to self medicate either.

[traceytired in reply to Clutter]

That's how I was with Levothyroxine...totally poisoned, but nobody would listen. I'm glad you are feeling better now, though. xx

[Hidden]

Oh my, I have just spoken to someone at Nice about this "guidance". They said it isn't theirs....they said it is "gathered information from various accredited organizations", about 40 0f them. I told them that the statement "Do Not Use T3 in conjunction with Levothyroxine" should not be there, is incorrect and needs to be removed as it was giving the wrong message to a lot of GP's. He said that they could not remove it unless they had evidence to the contrary. I stated that two GP's in my local prescribe T3 to their patients and that this is going on all over the country. Anyway we had a very long conversation and at the end he said that "you need to contact the Clinical Commissioning Groups, to get them to revise their local policies". These are the groups that are replacing the PCT's, made up of GP's and they are all different for each region. He has asked me to send in any written evidence I can find to them at Nice.org. I think I need to talk to someone from Admin about this.

[traceytired in reply to Hidden]

It was very brave of you to contact NICE, phoebs. I have to admit that I have just about given up with "the system". My little world has been an adult lifetime of nobody listening. Thank you for the work you have done, and for fighting in our corner. Xx

[Hidden in reply to traceytired]

Well Tracy you were right, here it is but I had to do what you said...up....down....up....down before it appeared. What's going on Admin?