OK. Progress is being made but.................

[marram]

Following my decision (encouraged by the lovely people on this site) to take charge, I persuaded the doctor in December to increase the Levothyroxine from 100 to 150 but he agreed only in small increments. So, I have been on 125 since around 5th December.

I have been feeling more lively, I did the ironing(!!!) and even manage to keep control of the kitchen(!!! too!). I am more active and my sleep patterns, while by no means back to my old patterns are much improved. There was a little blip when I got some new thyroxine which appeared to be total c**p because they kept crumbling into dust in my hands, otherwise I felt steady progress. Lost 6lbs in weight, too. (pharmacist has agreed not to give me those any more)

After a blood test I saw the doctor again. My TSH was around 1 so quite good, but as I posted at the time, the doctor was very unhappy that it was so low, and so he refused to increase it any more and in fact threatened twice or three times to REDUCE it again. That is despite the fact that my total cholesterol had fallen from 10 to 8 and the LDL-HDL ratio is good, I had lost some weight, and was getting more exercise.

I can see that if it's left to him he will reduce it again at the tiniest excuse. Thus I have made another decision, which is to get T3 and give it a try. I think I should do a replacement of some of my T4, rather than just adding the T3, to begin with. I will keep a careful eye on my BP, pulse and temperature while doing this. The T3 should arrive in about two or three weeks.

As I am on 125mcg Levo at the moment, and the T3 are 25mcg, does anyone have any suggestions as to how I should set the dosage?

Does the T3 affect the TSH level? I read somewhere that it is the T4 levels which trigger TSH production, if so does that mean the TSH would go up if I reduced T4 and added T3?

I have no thyroid so there would be no action on that front at all, the only T4 in my body would be from the Levo I am taking.

If anyone has any idea about this, I would be most interested to hear.

Thanks

[helvella Administrator]

Yes - T3 affects TSH level.

Yes - T4 affects TSH level.

This paper is newly published - and complex. But at least the whole paper is available!

Coordination of hypothalamic and pituitary T3 production regulates TSH expression

jci.org/articles/view/61231

It explains that the TSH production depends on both the hypothalamus and the pituitary, on both T4 and T3. Skip to the Discussion and see if you can pick something up from that!

Rod

[marram in reply to helvella]

Thanks Rod. I knew I would be able to depend on you...

[PR4NOW in reply to helvella]

Rod , a bit of work to get through but here we go again. "We hypothesized that the reduction in pit-D2 KO PVN TRH expression prolonged TSH half-life and decreased its biological activity by altering the TSH glycosylation pattern (18)." And "However, relative to the higher gravimetric amounts of TSH used in the assay (Figure 4C), pit-D2 KO TSH exhibited about 40% lower biological activity (Figure 4D)." Now if you would just find a paper that explained why the TSH pulse amplitude increases and the bioactivity decreases at night I would be most thankful. PR

[Hashi_since_age9-1988]

10ug of T3 is equivalent to roughly 50ug T4. T3 or T4 can cause your TSH to decrease. Your doctor sounds crap - threatening to reduce your dose when your TSH is perfectly fine at 1. He is basically trying to scare you into line so that you don't question him.

Its a wee bit dodgy to start self medicating - you will get yourself a bad reputation with the doctor (if you tell them) and they might refuse to listen to you in the future. If possible it is much better to go through the official routes. Self medicating is a last resort. Can you not get referred to an endo that will prescribe it? Have you had your T3 levels tested to see if they are low?

[Hashi_since_age9-1988]

At the most start with 10ug a day. Perhaps 5ug would be a better starting point (quarter of a tablet a day) and reduce your thyroxine by 25ug.

[marram in reply to Hashi_since_age9-1988]

The doctor will NOT test my T3. He is happy to toe the party line - in fact he was perfectly happy when I was clearly ill with cholesterol 9.7, and putting on weight, unable to walk and depressed.

He wanted to give me statins, blood thinners, anti-depressants, PPIs because of my dicky stomach, amitriptyline to help me sleep, and asthma inhalers (two kinds) plus codeine to stop my recurrent diarrhoea. (I alternated diarrhoea with constipation.) ANYthing rather than 25mcg more of Levothyroxine. He finally agreed last December but very grudgingly.

I have refused anti-depressants, stopped the statins, amitriptyline, asthma inhalers, and codeine. I no longer take Paracetamol for the constant muscle pain. Do I care if he gets upset? No, not if the alternative is letting him kill me. He has constantly refused to listen to me in the past. If he refuses to listen to me in the future, have I really lost anything? I have already asked for a referral and been ignored.

I will do private T3 tests regularly. Before I see him I will have results ready so he can see the T3 level clearly, since the Dr Toft book says that it should be 'unequivocally normal' if the TSH is low, yet the doctor, so concerned is he about me that he has never tested the T3.

[marram in reply to marram]

BTW I was on 150mcg Levo for 23 years and very healthy before this doctor started messing about.

[shaws]

I don't know if this excerpt will be helpful. If you want a copy of the whole Pulse Online article, email [e-mail] and give a copy to your GP before your next appointment. This is what Dr Toft ex President of the British Thyroid Association says:-

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).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

[NBob]

Perhaps you would consider sending your GP a variation of the following draft letter. please print our the papers and attach to your letter.

Dear Doctor… …

You have told me that you wish to reduce my dose of Levothyroxine. Unfortunately you have not told me why you wish to do this nor have you given me the information I need to understand your reason for reducing my dose of Levothyoxine. I remind you that Good Medical Practice places a duty on you to work in partnership with me (paragraph 49) and to provide me with information I need (paragraph 32).

I remind you that, according to paragraph 49 of Good Medical Practice, you have a duty to work in partnership with me and according to paragraph 31 of Good Medical Practice, you have a duty to listen to me, take account of my views, and respond honestly to my questions.

I felt well on 150 mcg of Levothyroxine. I do not feel well on any dose below that. It is therefore logical that 150 mcg is the right dose for me. Any dose below 150 mcg will cause me pain and distress. I remind you that, according to paragraph 16c of Good Medical Practice, you have a duty to take all possible steps to alleviate pain and distress. I remind you that, according to paragraph 47 of Good Medical Practice, you have a duty to treat me as an individual. As an individual I feel well on 150mcg of Levothyroxine. Consequently I cannot see any logical reason for you to reduce my dose. Please be aware that, according medical negligence case law, a doctor’s course of action has to be logical. Reducing a dose that I feel well on to a dose that I do not feel well on is not logical and may be seen as negligent practice.

If you think that my TSH is too low please be aware that TSH is not a good indicator of health when patients are on Thyroid Replacement Therapy. Please read the attached paper - Is Pituitary Thyrotropin an Adequate Measure Of Thyroid Hormone-Controlled Homeostasis During Thyroxine Treatment? eje-online.org/content/168/... ).

You may think that low TSH leads to osteoporosis or heart problems. That is not so and there is a lot of evidence to support this view. Please read the attached paper - Is it safe for patients taking thyroxine to have a low but not suppressed serum TSH concentration? endocrine-abstracts.org/ea/....

I remind you that, according to paragraph 16b of Good Medical Practice, you have a duty to provide effective treatments based on the best available evidence. Furthermore, you should treat the discussion you have had with (or this letter) and the information I have given you as an opportunity for informal learning and reflection about his performance that has arisen spontaneously from your day-to-day practice. This is in accordance with paragraph 8 of Good Medical Practice and paragraph 12 of Good Medical Practice supplementary guidance Continuing Professional Development.

Please treat this letter as a complaint and put this letter in your portfolio of evidence for your annual appraisal and for revalidation.

If you do not maintain my dose of Levothyroxine at 150mcg, I may make a formal complaint to the Clinical Commissioning Group or the General Medical Council.

Yours Sincerely,

[marram in reply to NBob]

Wow. That is tough talking. It may well come to that, thanks so very much

[NBob in reply to marram]

In my view, a GP acting as you describe needs some "tough love".

Its your letter and your health. You can soften it as much as you like.

Its your health at stake and its a pity if a GP is upset about his poor performance being brought to light. The important thing is that you get back to health. That is your doctors job and he's not doing it. Don't forget, he is supposed to be working for you.

Whatever you decide to do, get well soon.

BTW Good Medical Practice says he cant "de-list" you just for complaining.