I saw an endo at Hull Royal on the 4th August. He was quite helpful. My husband and I talked to him for over half an hour. I told him about all the symptoms and problems that I had had since late October last year.
He told me that I had symptoms of both Hypo and hyper thyroidism. I told him that I had tried to reduce lio twice this year on orders from two different doctors. He told me that I must not reduce my current meds of 3 x 20 mg lio and 100mg levo. He said as I had been so ill twice there was no point in my trying to reduce meds in any case. I asked him, very specifically, would he put that in a letter to my doctor. He said, "Yes." I asked him about whether he thought my low but within range vit D, Vit B12 and Ferritin could be causing problems with absorption of my thyroid meds. He said that he did not know and had not heard that before. I thought that was a bit disappointing. On the whole I was happy with the meeting. It is a big thing for me that my doctor will no longer insist that I reduce lio. ( or so I thought!)
I was told it would take 2 and a half to three weeks to get the letter to my doctor.
After 3 weeks when my copy had failed to arrive, I contacted Hull to ask if it had been sent. I was told that I didn't get a copy - I had not filled in a request form when I was at the clinic. It's hard to fill in a form when one doesn't know it exists!! After an argument, I was told if the doctor agreed I could have a copy.
Yesterday my copy arrived.
The letter is completely different to what was discussed and agreed at the clinic.
It states that I have, " long history of problems with her thyroxine replacement" This is in spite of the fact that I have had no problems for 8 years up to last October. Then, no mention of me being hyper and hypo. He states he explained the risks in being over medicated - true. He then says that he explained to me that I do not have any absorption issues - not true, he was willing to accept this was a possibility stating only that he had no knowledge of this. He did state in the letter that he had no objection to me raising B12 and vit D ( no mention of ferritin which was my big concern. )
What has made me really angry is his final paragraph, "My recommendation to the patient was to reduce the liothyronine gradually to maintain blood levels of Free T3 and Free T4 in the normal range and TSH in the lower half of the normal range."
He then stated my wish to remain on my current doses of lio and levo even though I know the risks.
Where does this leave me?
We drove over 100 miles to see a consultant only because my GP said I had to. I thought the visit went well. How could I know that it would take the endo a month to write the letter to my gp and that he would change his recommendation.
It was worse than a waste of our time. It has left me very worried. The endo was very definite to us at the clinic that because of my severe hypo as well as hyper symptoms I must not reduce lio.
He did use a formula to calculate how much lio and levo I should be on in total. He then said, "Your levo MIGHT be a LITTLE high." Even after saying that he was definite that I should not reduce levo or lio. There is no mention of levo being too high in his letter.
His only concession to my symptoms is to state at the end of the letter," The patient is very anxious about doing the same ( reducing lio ) due to the fear of the multitude of symptoms she gets on reduction. She wishes to continue on the existing doses having understood the ill-effects of over replacement."
Will my Gp be happy to leave my meds alone after seeing this letter? I get really stressed every time I see a doctor because I know he's going to tell me to reduce lio. I get really ill after a couple of weeks. Last time I got severe chest pains and breathing difficulties.
Anyone else had this problem with an endo?
Can anyone offer me any advice?
Thanks for reading this.
Written by
dizzy864
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What a huge disappointment for you. You would have been very hopeful leaving your appointment.
I think he might have been put in a situation that - to cover himself - he has to toe the line laid down in the guidelines.
You must understand they have no understanding of the use of T3 in general.
Just ignore his comments and go to your GP with the impression you first had after your consultation, knowing you don't need to reduce liothyrone at all. Doctors who don't prescribe T3 don't have a clue and rumours have been spread to our detriment who need T3 and not T4.
To reassure you and maybe your GP you can copy a comment or two from this link and read the questions/answers. Go to the date November 9, 2005 for the first. Dr Lowe himself couldn't function without his daily dose of 150mcg of T3 because he had Thyroid Hormone Resistant. This is an excerpt from another answer and go to November 9, 2005:-
"Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:
This statement makes a fact perfectly clear: When used sensibly, T3 is extraordinarily safe among prescribed drugs. When I say extraordinarily safe, I’m comparing T3 with drugs such as the amitriptyline which your rheumatologist prescribes for you.
This is part of another:-
And ". . . caused strokes"? If anything, the use of T3 may help prevent strokes. I scanned MEDLINE for studies on "T3" and "strokes" published between 1966 and 1997. These key words were mentioned in 43 publications. Most publications reported the beneficial effects of T3 on cardiovascular function. The word "stroke" was most often used in regard to the "stroke work in cardiac contractility" (a physiological description)—not in the sense of cerebrovascular accidents (strokes). I'll mention just a few representative publications. These suggest that it is urgent for the physician you mention—for his patients' welfare—to quickly update his knowledge.
In one study, a researcher found that T3 levels were significantly lower in 42 of 65 stroke patients. [Liang, D.S.: Stroke and thyroid hormones. Chinese Journal of Neurology & Psychiatry, 24(6):352-354, 384, Dec., 1991] It is certainly possible that the low levels of T3 were partly responsible for the strokes. It is well-known that low thyroid hormone levels result in high blood fat levels, and high blood fat levels predispose patients to heart attacks and strokes. By lowering blood fat levels, the use of T3 is likely to help prevent, rather than cause, strokes in some of the above-mentioned physician's patients.
The use of T3 is even beneficial in patients with the most frail heart conditions. Researchers in one study reported, "Triiodothyronine [T3] administration in patients undergoing cardiopulmonary bypass surgery is safe, may lessen the need for pharmacological (vasodilator) therapy, but may increase heart rate." [Vavouranakis, I., et al.: Triiodothyronine administration in coronary artery bypass surgery: effect on hemodynamics. Journal of Cardiovascular Surgery, 35(5):383-389, Oct., 1994]
I really thought I'd covered everything with the endo.
I had problems when I last saw an endo 8 years ago. I saw quite a young man who was very helpful. He told me he had done a lot of research on T3 only and T3 and T4 combination therapy. He wrote to my GP stating he was happy for me to increase lio from 1 tab to 3 tabs a day as I had asked.
I then felt better than I had for years.
A routine follow up four months later turned out to not be so routine. I saw the chief endo - a man coming up to retirement age. He was vehemently opposed to the use of T3. He wrote to my doctor telling him to take me off T3 altogether. I've refused to do so.
This time, the endo told me that would not happen at Hull. He said all 11 endo's regularly got together to agree a common policy. He said policy at Hull is that any patients already on lio are allowed to remain on it at their present level if that is what they want. Policy was to not give lio to new patients except in very rare cases.
I really thought I had covered everything.
I am angry and worried. He told me I really need to stay on my present dose because of my symptoms and then states his recommendation to my doctor that I reduce lio.
I find this just so unbelievable. Thyroid sufferers have enough to put up with, without this treatment.
I have tried quoting web info to my gps. They just tell me not to look on the web as not all info out there is accurate and refuse to listen to me.
Unfortunately, ( for me ) the one doctor in my practice that did used to listen to me retired last year. He was prepared to bend the party line - probably because he was due to retire.
Other doctors aren't interested. I can't change to a different surgery. I live in a village that only has one practice. We're too far away from other practices for them to take us on.
I read somewhere, "Only a fool will keep repeating an action in the expectation of a different outcome." I can't remember who said it.
I've very reluctantly reduced lio four or five times over the past 8 years - twice this year. Each time with the same result - I'm very ill for four to five weeks and go back up to my regular level.
No, do not reduce your dose and they shouldn't threaten you. You are the patient, you know what makes you well and what doesn't.
Where would any of us be now if we didn't have access to the internet - many of us would still be unwell. The fact that you have also followed their directions and became unwell again shows they are on the wrong track, not you. (Or me for that matter as I take T3 only).
Have they tested your Free T3 just for interest to know it's level when they've reduced your T3.
HU Thyroiduk.org.uk is an NHS Choices for good information regarding thyroid hormones and tell your doctor that's where you get support also.
Why should we be forced to buy our hormones.
Also it is worrying for you as you don't want to get unwell again and if anyone lives in Hull I would avoid the Endocrinology Dept at all costs.
I doubt the Hull Senior Consultant has ever heard of Thyroid Hormone Resistance for which T3 is the only hormone which works.
I never knew the risks of amitripline sorry can't spell it but anyways didn't know about the seizure part as I too am prescribed this but recently felt very unwell when taking it and started to come off it as of the known side effect of weight gain on it. Ty I know I won't be taking it again. Asked the doc to not prescribe it and for some reason she still keeps putting it on my weekly script. X
I think you may have to wean yourself off anti-d's so check with GP how to do so. I don't think you can just stop. I am not qualified either to advise.
Yes they are used to treat depression mine were prescribed for pain. My doctor won't even help ween me off codine having to do it all my myself unfortunately. Just I don't think chopping and changing my doc is not helping. I'm off them a while now. I'm just on so many med's I couldn't function x
Ty shaws managing to get them sorted just the opiates I need to sort now. They seem to give them out like sweets it's ridiculous I don't drink or smoke anymore so that's all good. Ty for ur advice x
I've just found the perfect quote for you if anyone should suggest reducing your T3. I've just done a new post and this is the info because some of us could have the genetic defect which means we cannot convert T4 to T3 as the "Specialists" imagine.
I feel I definitely do have this defect because I feel so well on T3 only and utterly unwell on levo alone. I picked up the minute 10mcg of T3 was added.
Dizzy, it's a backside covering letter. He's making it clear to your GP (and anyone else involved) that his advice to you is to reduce dose but you have refused to do so.
There's no instruction to your GP to alter your dose and he's clearly stated your anxiety and unwillingness to do so.
Your GP will probably feel able to continue prescribing your current dose in lieu of direction/instruction from the endo to do otherwise.
I can totally relate to your consultation with the endo and the letter he sent you being incorrect and very different from what was actually said...this has happened to me many many times.
With regards to your hypo/hyper symptoms i have the very same problem. My endo beleives that there is an issue with my gut and i am having a test to find out exactly what is getting to my organs.
Christine ask the GP to test your Free T3 as that will show if your levo is converting to sufficient for you. It should be towards the upper part of the range.
I hope they are also checking whether you have low acid in your stomach as hypo usually are 'low' rather than 'high' acid.
Thanks for your replies. I agree that the endo is covering his ass. What I can't understand is why he needs to. These doctors are supposed to be highly trained and we are expected to trust that they know how to help us. I believe the advice he gave me was what he genuinely believed was best for me. It can not be right that he is put into a position where he feels he has to lie to my gp in order to keep his job.
If endo's are so hog tied by the NHS that they need to lie to gps, surely something is badly wrong with the NHS?
Two different doctors this year ordered me to reduce lio because I was unwell. The first ordered a blood test but insisted I reduce straight away.
The second, a locum told me, " I know nothing at all about the thyroid", but ordered me to reduce anyway.
All my results, until this year, have always been in range apart from my TSH which has been suppressed for years.
This year both the blood tests I had showed free T3 above range but it had gone down a lot between the two tests. My free T4 was in range.
The endo told me my free T3 result was not a problem because I had had the blood taken within 14 hours of taking my thyroid meds. It was only after my latest test that I read that I should have had at least 24 hours without meds. He confirmed that I should have done this.
He agreed with me that I had probably been ill for the past months because of problems with variations with the strength of lio and not due to over medication. He said that he had seen numerous patients who complained of the same problem.
I have never had any doctor suggest why I am so much better on combination T3 and T4. They' re always too busy trying to get me off T3. It's never been suggested that I have any tests. Stomach acid has never been mentioned.
When I saw the locum in Jume, I'd already tried to reduce lio in Feb by dropping one tab every 3 days and been very ill, lasted two and a half weeks and put myself back up to three a day. So she very reluctantly agreed I could drop 1 tab every 4 days. I'd been taking 3 tabs a day for the past 8 years. I'd been so ill for months, I agreed. The locum immediately altered my repeat prescription down from 84 tabs ( 3 a day ) to 56 tabs ( 2 a day ). I lasted three weeks - I got chest pains and breathing problems and put myself back up again.
In spite of writing three letters to the surgery and visiting the surgery and talking to one of the partners, I can't get them to alter my prescription back up to 84.
My letters were ignored and the partner did nothing.
It's not been a problem getting what I need because the locum made a mistake and issued me with an extra prescription. But it is becoming a problem as that is being used up.
The reason they cover their ass is because of what happened to Dr Skinner and several other doctors who tried to go down the route of NDT and T3 and actually treat their patients rather than slavishly follow the guidelines. It's galling.
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