self medicating with t3 + t4 hormone .advice appreciated, seeking an endo in Mcr who prescribes t3 hormone

After losing weight and being under a lot of stress for 18months,i developed high tsh,with very low t4 levels,had I been a point out of the normal range,my score being at the very end of t4 range i woud of been classed as hpothyroid and not subclinical. my gp had not tested my t3 levels.I had been to the gp on a number of occasions with all the symptoms of underactive thyroid i had started to retain fluid in legs and abodomn and swelling in neck.spending 3 hours exrcising anmd gaining wait retaining fluid body puffy,i paid to see a pvt endo who due to myself being a light weigh 7.7 stone was very reluctant to treat myself,even tho I was off work with all symptoms of hyothyrodism and felt very poorly,i argued because of low weight I did not want to be denied treatment for all of my symptoms,second visit to endo after agreeing to reduce my exercise to half hour aday a trial of 25mcg was prescribed,the endo explained may lift mood some but ios pyscological in some patients,this upset myself,thinking the endo thought my prob pyshcological.i started the script endo prescribed with dr to my gp to take over treatment in mind.on 25mcg I felt no different,due to another health prob I saw a docer consultant,who asked how I was feeling on t4,i explained no different,his reply the dose your on you may aswell not take the medication,after being off work for weeks I increased my dose to 50 mcg in hope of feeling better and feeling I was being penalised by endo,i then made apt to visit my own gp and discuss med increase he prescribed 50mcg t4,i still felt no imp so I decided to up my dose to 75mcg still no imp after blood test to 100mcg,i bought meds online pharmacy,and maybe admit later to gp if I was feeling benefit at this dose.i also have very low body tempreture raynauds phenomenum,i was told temp should imp,this did not happen.Ithen began research on T3 hormone and wilsons temp syndrome,i figured due to low body temp,being underweight and stress t4 was converting to rt3 instead of t3,so ipurchased t3 from pharmacy in spain and started 12.5 mcg combined with t4 100mcg i then visited my gp to discuss the t3 hormone my gp explained he was unable to prescribe t3 without instruction of endo.I explained to gp about breakdown in relations between myself and endo,the endo suggesting I may want to use thyroxine to lose more weight,or reduce gym activities this i very upset about.i felt this would go against a t3 prescription or trial.i explained this to gp he contacted endo to get her thoughts on myself using t3,she instructed a free t3 test,ehere my levels came back,was negative about myself using t3 and instructed if I felt no better after taking 50mcg after 6 week t4 I did not have a thyroid problem to stop treatment.I am now currently taking 100mcg t4 and 25mcg t3 I have not re visited gp to discuss myself feeling no different on t4 alone in fear of treatment being stopped.i feel fit and well on current doses of t3 and t4 with no longer having problems with body tempreture,no fluid retention,improved mood no depression,lots more energy and no joint pain.Iam now thinking long term and will my body be ok on these doses longterm,im considering going to visit a new endo in Manchester to explain my situation,see if they can help and advise myself and instruct gp to prescribe t3.With regards choosing a sympathetic endo who understands each individual case I do not know where to begin?? can anybody please recommended a great endo in Manchester with nice mannor,experienced in treating difficult subclinical cases and who also prescribes t3 for patients?i would really appreciate any advice from any thyroid patients who feel they can help,or wish to advise myself from experience on mystory and the medication im taking.

please get in touch any advice much appreciated

sophie x

7 Replies

  • Not everyone gains weight with hypo. I lost it. Have you been tested for thryoid hormone antibodies? Are you still doing so much exercise? It isn't good for people with hypothyroidism, not until they are on the road to getting better, and may make them feel worse. In fact it can be a precipitating factor in developing hypo. You are pretty unlikely to get an NHS endo to prescribe T3. You may not need it anyway. You may do better on NDT (natural desiccated thyroid) and need to take adrenal support first. Not everyone thinks Wilson's Syndrome exists. As you are used to treating yourself, I suggest you go to one of Dr Barry Durrant Peatfield's outreach clinics when he comes north. His book is very good, Your Thyroid and How to Keep it Healthy. He lists self-help measures.

  • I am taking more than my local Endo abd GPis happy with and they have now refused to treat me . I will have to get. Private prescription or buy online from

    now on. I take 175mcg. Thyroxine and 20mcg T3 and feeling so much better.. Fortunately at the moment I am seeing the brilliant Dr Skinner whom without him I would still be feelng so ill . These blood test guide lines need changing the consultants need to start listening to the patients bodies screaming out for help. I also used to work out regular but cannot do anymore but to be honest exercise is the least of our worries a nice walk can be if benefit . X

  • I am so sorry. I must have sounded unsympathetic. I was going to suggest Dr Skinner, but thought he might be a bit far away from you, also docs do have slightly different approaches. I go with Dr Peatfield's, which is to treat the adrenals first and not to use levothyroxine unless you have very simple hypo, and in that case you wouldn't be seeing him. He is also better on the nutrition side than Dr Skinner. You can get all this info from his book or I am sure Thyroid UK does an info pack. You may have a problem with high cortisol or you are not converting the hormone properly or have slight cellular resistance.

    Forget the useless blood test and NHS doctors, they are hopeless. You need to find out what is happening to the hormone at the level of the cells. You can do this by taking the 24 hour urine test which measures the hormones (T3 and T4) that have been used by your body over 24 hours. You can get this test at a discount through TPA (thyroid patient advocacy) and also through Thyroid UK, but the TPA discount is much better. (Both these organisations have links to Dr Peatfield and Dr Skinner who are giants in the hypo world.) As a matter of protocol, they send the results to the organisation, who act as the 'practitioner', but of course also goes to you. I don't think you can order the test without having a practitioner, even if it is only an organisatuion. So join TPA and then ring the laboratory Genova directly and ask for the test with the TPA discount. You don't have to pay until you return the test to them. The results will give you an idea of how low your hormone levels actually are and whether you are converting from T4 to T3 or not. By way of illustration, my last blood test said I had 17.9 picamols of t4 circulating in my blood and around 4.2 picamols of T3, but the urine test said my t4 was very low and my t3 was quite low. That meant the t4 was disappearing somewhere, possibly being converted into reverse t3, which causes cellular resistance, which corresponds to my symptoms. They are the guide to how bad your hypo is, not that test which can only say what is going on in your bloodstream not the cells. The range is also too wide. By the way, my tsh is now virtually suppressed, something that would have the average doc sweating and wringing his or her hands.

    You may also have vitamin and mineral deficiencies, common in hypo, that prevent the uptake of the hormone by the cells. You can get many of these on the national health, so get what you can out of your doc. TPA do a good standard letter asking for tests that you can copy and fill in with your details. Doctors respond to the written word. I have friends who have got tests like this and your doc sounds quite cooperative compared to some. TPA also do an excellent handbook on hypo, written by Dr Peatfield, that is an easy read if you can't get your head round his book, foggy brain and all that. Education is vital in learning how to deal with this horrid disease.

    Finally, you could do the 24 hour adrenal stress test, also from Genova, with a TPA discount, to see how stressed your adrenals are and whether your cortisol is high or low. Both conditions tend to interfere with the uptake of thyroiid hormone by the body. I believe Dr Skinner thinks the adrenals will come on line once TH kicks in, but treats with hydrocortisone if they don't. However, I have used a porcine glandular, which as proved helpful. More about them in Dr P's book or the TPA handbook. TPA also does a list of docs, both NHS and private, who have been known to prescribe NDT and T3. I have found it very useful to be a member of both Health Unlocked and TPA.

    Finally, you may not need the levo, which is giving you T4. It is a synthetic hormone anyway and is not bioidnetical with your natural hormones, nor is I believe T3. You could ask Dr S about swapping over to NDT, which contains the full range of hormones you need plus calcitonin. However, it would be helpful to have an idea of what is going on in the cells first.

    Hope that isn't too much info.

  • Hi Chillyfeet

    You may not be aware that this community is run by Thyroid UK and hosted by HU. In the same way that other charity forums are hosted by Yahoo etc.

    Although TPA do offer a better discount on the tests, this is because they do not have the overheads and staff costs of Thyroid UK.

    Thyroid UK RELIES on the commission received from the tests to keep running. We would therefore appreciate it if everyone could promote and, indeed link, to the testing information on the THYROID UK website. Thank you.

    Thyroid UK also produces an excellent Information Pack:

    Louise Warvill

    Charity Secretary

    Thyroid UK

  • Hi chillyfeet, can u point me to the link to the standard letters on TPA website?

    Much appreciated :)

  • Hi there,

    I feel so much better since taking synthetic T3. However, people differ and have their own preferences.

    GPs quite often do not understand hypothyroidism and seem to become confused or forgetful about treatment. When first diagnosed with hypothyroidism people are placed on a low dosage because to much too soon, can cause heart problems. What GPs/endos often forget to say is that you need to go back to the surgery to see how effective the treatment is. If no benefits then the dosage is raised. It is very sad that they forget to tell us to come back because that can have dire consequences for the patient.

    There should at least be a leaflet available which outlines different choices for treatment, how treatment is administered etc. Most people are unaware that you can go to your local PCT and ask if your GP can prescribe T3 on a named patient basis.

    Diagnosis and treatment is very poor and in certain cases always has been. My auntie for evample spent 20 years in an institution for the insane because, even with treatment, she had terrible depressions and anxiety attacks. I can assure you that she was a lovely lady and my favourite auntie. She was forced to stay in this institution in 1952 and eventually discharged into the care of a relative in 1972. Unfortunately, her ill treatment did not stop there!

    I hope you find a sympathetic endo and your GP provides the right treatment.



  • Hi Linn, what is a PCT? So if I decide that I want to take medication, I have a right to get it on the NHS or privately? I need T4 (10) and my TSH is 4. Private message me if you prefer.

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