Thyroid UK

Need help had enough !

Need help had enough !

No t3 need help Iv had a thyroid condition for 9 yrs it took years to diagnose it and I put on 3 stone the only way I can lose weight is with a drastic diet such as the cambridge then I get very ill and put it all bak on again ! Iv tryed every way of eating possible I'm putting on 4lb weekly I'm 2lb heavier since lastnite ! Iv seen a doctor in London frew a recommendation I thout I was getting somewhere I did have hashis but don't eat gluten and have controlled it as one point I was very ill plus I have quite bad depression at times I'm on liothyronine as thyroxine never worked for me now my gp ha stopped my meds saying I'm now over active which I'm not I have no sign of it all symptoms are underactive my private doctor who was I mite add rushed me in and out as he was going away !! Has diagnosed me with wilsons temreture syndrome as my temps all in the 35s and never above Iv read up on it and it looks like I have it he told me unfortunatly u can't get slow release t3 in the uk only in the USA now he's put me on liothyronine 2. Tabs 3 times aday plus Iv been on nutri adrenal ,vit c, thyro complex, q10 , evenin primrose oil these help me maintain my memory now I explained gp won't giv me t3 he wrote me a private prescription for 148 liothyronine the cost in boots who was the cheapest was £836 that's for 1 month I'm sure it would be cheaper to fly to see dr Wilson in USA !!!!! I'm so depressed with it all don't no where to turn or what to do anymore I can't buy meds and should be receiving free on nhs please can anyone help advise me as at end of teather feel like giving up the blood test below cost me a fortune don't no what to do anymore seeing a nhs endo on fri but I don't hold out any hope

9 Replies

Shazzy, I am sorry you are having such a bad time and obstacles to get over through your consultations and payments.

I think it would be best (I am not medically qualified) to start at the beginning again.

Have you had recent blood tests for your thyroid gland (I see your GP said you are overdosed). Can you please post your blood test results with the ranges on a new question if you don't have them to hand at present.

You couldn't possibly pay the extravagant sum that is being requested in the UK (for some unknown reason to me and others why it is so expensive).

I don't understand why your GP has stopped your T3 rather than reducing your dose if necessary. He is probably afraid that you will have a heart attack, they don't understand that a heart attack is most probably due to undermedication rather than overmedication. If we are overmedicated we are well aware of it and would reduce meds ourselves.

Who told you to reduce your medication? If you have your results now, please quote them with the ranges for comments.

Weight gain is a clinical symptom of hypothyroidism, even sometimes before diagnosis. Levothyroxine not at an optimum dose for the patient also causes weight gain as our metabolism isn't raised enough. Extreme dieting also isn't conducive to your health but I understand your reasons for doing so. Doctors are no help.

According to Dr Lowe, time-release T3, is not so efficient as one daily dose of T3. Other members may respond privately to you by Message.


Have posted previously il post again now thanks


Ok I've posted them one is reverse t3. One is for hashimotos and other one is for tsh I think


These are two items for you to read at your leisure. First go to the date February 4, 2008 to read what Dr Lowe says about Wilson's theory. Second, go to the date November 19, 2000 of which this is an excerpt:

This past year, several Internet doctors, who give advice on thyroid hormone therapy, sired a false belief about the effects of plain T3 on the body—that it causes "physiological instability." These doctors must have a large audience. I say this because I’ve heard (through e-mails, letters, and phone calls) echoes of their false belief in almost every conceivable variation of words. Your doctor’s belief about plain T3 being "a very bumpy road" is an especially creative and graphic variation of the false belief.

and another from November 19, 2000

Conventional endocrinologists' lack of knowledge about T3 results from conduct that is clearly unscientific—that is, overall, they accepted without question mandates passed down to them by old guard thyroid specialists, much as loyal military personnel obediently and unquestioningly comply with orders from higher command. The particular mandate of conventional thyroid specialists I refer to here is this: "The only thyroid hormone preparation a doctor should ever prescribe is T4 (thyroxine)."

To the discredit of both conventional endocrinologists and the thyroid specialists whose edicts the obey, this mandate is not scientifically based. Instead, it’s based on a powerful marketing campaign of a major pharmaceutical company. This marketing campaign, not science, is precisely why most doctors robotically write "Synthroid" on their prescription pads when they learn that a patient is hypothyroid. Conventional doctors, including endocrinologists, have allowed their minds to be utterly subjugated by this marketing campaign. As a result, they’ve deprived themselves of clinical experience with any thyroid preparation other than T4.

So, the wariness of conventional doctors, including endocrinologists, about the use of T3 is born of ignorance. Thus, as a whole, they are the least qualified doctors from whom to seek expert advice about T3. In the past several years, many unconventional doctors have acquired extensive experience with the use of T3. These doctors include many family physicians, physiatrists, psychiatrists, nutritional and holistic doctors, and naturopathic physicians. For expert advice about T3, it seems prudent to bypass endocrinologists and to look to these more knowledgeable and experienced doctor.


Ok but Iv been on t3 for 5 yrs now as thyroxine didn't work at all Iv been on at the most 7 x 20mcg which is high but had reduced symptoms gp wanted to cut me to 3 I refused and went on to 5 tabs all symptoms came back cold eight gain mood swings and low temperatures. I buy my own T3 but my gp told me to stop it and have not issued me t3 for over 6 months even thou Iv been there crying they don't care Iv seen a doctor in London this week I felt totally rushed and he told me not to get stressed or il become worse then gave ma a prescription for what I should get free and was getting free for liothyronine t3 3 repeats at £836 each i was totally stressed and feel very depressed.


Your blood tests look fine to me and someone who has another opinion will respond to you. I believe you do not have reverse T3.

You don't have antibodies, so you don't have hashimotos.

The TSH, etc is o.k. as when we are on T3 alone that's normal, i.e. low or suppressed TSH and high T3. You are not taking T4.

Your doctor is inexperienced in the use of T3, so automatically assumes you are overdosed, when you are not.

I don't know if your GP will take note of this answer to a question:

Dr. Lowe: The improvements you describe are typical of what we hear from patients using high-enough doses of Cytomel. Because of your improvements, and because your symptoms of possible overstimulation are occasional, taking you completely off Cytomel seems to me radically improper.

For someone taking 100 mcg of T3, we expect your pattern of lab results—a low TSH and high T3. However, your TSH and T3 levels are irrelevant to whether you're overstimulated or not. Two studies we just completed confirm other researchers findings: these tests are not reliable gauges of a patient's metabolic status. Many patients taking T3 have TSH and T3 levels like yours but still have severely low metabolic rates. Their metabolic rates become normal only when they increase their dosages further. Their metabolic rates become normal and they have no detectable overstimulation.

Maybe you would like to leave this with your GP.

Have you sufficient medication at present?


Thank u I'm seeing the gp on Tuesday to basically beg for my liothyronine I'm taking the prescription a private doctor gave me as well to show them he wants me to have and dose as well I see the endo at whips cross on Friday I have enuf meds for maybe two weeks max But I do have some cytomel left thank u for info


Ok thank u would welcome any ideas of what kind of thyroid problem I'm suffering with as if not wilsons I'm lost


As this post is now a bit mixed up I am going to reply to one of your other posts.


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