I am so desperate. I cannot find a doctor who will accept the fact that I finally feel fantastic after 4 years post thyroidectomy while taking NP thyroid 60 mg a day. Every doctor tries to lower my dosage to get the TSH up and they will not listen to me they will not read anything they don't care anything about my symptoms when they lower it and it has just happened again for the third doctor. The last doctor said he would not do TSH, then I saw him once in person, I told him I felt excellent on the NP60 mg, I just needed a doctor to order my prescription. This male nurse practitioner supposedly thyroid and metabolism specialty, has lowered my dose by 30 one day a week. After about 4 weeks my hair was coming out again, my nails were breaking, my voice is hoarse, symptoms of hypo. He does not care about my symptoms, none of the doctors I've been to care anything about symptoms they only care about TSH on their lab test which mine is very low because I don't have a thyroid. Now the same nurse practitioner has asked me remotely to lower it another day 2 days on 30 mg and the other five 60 mg. No reaction at all to all my messages about my symptoms. Now I've been told if I don't like his care I can find someone else again this is happening repeatedly again and again. I will not lower my dosage and make myself sick to make them happy with their lab report. I am very slightly over the high T3 lab range.
I can't see how 60 mg of NP thyroid daily can be overdosing when I have no thyroid at all. So I just have to find somehow to get my prescription! Can it be ordered from Canada without a prescription? Any ideas appreciated. I don't want to go to any more doctors they're all the same and they will all make me sick if I follow their instructions. I am in the United States. Absolutely terrible medical care for most people, all they are is pill pushers. They're not interested in you being well they're interested in referring you to specialists for tests and giving you prescription medications that's it if you don't like it get out! I'm not up for supporting pharmaceutical companies with their cover up chemical prescriptions nor my interested in doctors who don't know how to do anything except prescribe pills. I don't even think they know how to clean out an ear anymore. they don't know how to do anything, they're just robots.
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If you haven't seen it, this document from the ThyroidUK website is worth a look.'Myths of Hypothyroidism' with a section about 'The myth that a suppressed TSH leads to Osteoporosis'. Many of us have suppressed TSH.
Thanks for the link again. I hunted for it in thyroid uk website and could not find it. Going to post to the female doctor at Medicheck who keeps going on re low tsh and osteoporosis. Never mind my low ft3 and already have osteoporosis
This nurse practitioner does realize you do not have a thyroid? 60 mg of NDT is a pretty low dose to begin with. I have no trouble in the US getting my meds and proper tests. Check out the page at thyca.org/sg/ and see if there is a local support group near you. Most are meeting online but you can email or call the group facilitators and see if they can recommend a doc near you.
Follow your instinct and like many on this forum we 'DIO' (do it ourselves) otherwise we may not relieve all of our clinical symptoms due to doctors who 'seem to know little about how to diagnose dysfunctional thyroid glands without blood tests any more'. Mine, for instance told me that T3 was 'high' (I said but it will be high becasue I don't take T4 but T3. He responded 'but T3 converts to T4!').
They seem unaware that TSH is from the pituitary gland and it rises when our thyroid gland is struggling.
All of our 'old-fashioned' doctors knew all clinical symptoms and prescribed a trial of NDT (natural dessicated thyroid hormones - it contains all of the hormones a healthy thyroid gland would provide. NDT saved lives from 1892 and still does today but in UK they've withdrawn this without notice and caused immense stress/worry amongst patients.There were no blood tests before Big Pharma introduced them for diagnosing (they also make good profits from blood tests) as well as other medications we may take to try to relieve our symptoms.
I think doctors more likely to prescribe anti-depressants for us as we keep appearing in their surgery too often complaining of symptoms.
The problem nowadays is trying to source our hormones as small pharma companies probably struggle if insufficient numbers order their products.
Mary Shomon's page, verywellhealth.com/find-bes... has a link to find local thyroid specialists. Of course it is still not guaranteed. I saw one locally in NC and she only wanted to check my TSH. I literally walked out asking the secretary to close my file. I also saw a fairly young Endo at Duke, who also wanted to raise my TSH, despite being on NPThyroid and T3 as well. So it's still hit or miss.
Currently I have been having some success with my third doctor in town, whose nurse manager, also on thyroid meds, has been educating him.
As you are in USA I suggest creating a face book account if you don't already have one and join a group called "hashimotos 411" ( they just temporarily had to change their name). There's about 93,000 members in this group and they have lots of resources, one of which is a list of worthy doctors. You can also just post on their page that you are looking for a doctor in whatever area/ city you are in. The face book page is private and you have to answer some questions to be able to join. There are also about 15 moderators and administrators that run the page who are very informed. Right now there is some problem with their face book page name and they have temporarily named their page, "Hashimotos Under Construction".Best of luck
Here is a letter I wrote for someone else. you may need to adapt it to suit your won circumstances. It is bit out of date as well but the main points are there. or just use the main ideas to help you write your own letter
Your Address here
no_reply@example.com
Date:
Dr’s name here
Surgery address here
Post code here
Dear Dr *********
Unilateral Reduction of my dose of litheyronine (T3)
Mental Capacity Act 2005
Good Medical Practice 2013
Good Medical Practice Consent: patients and doctors making decisions together 2008
Montgomery v Lanarkshire Health Board 2015
Bolitho v City and Hackney Health Authority 1993
I write following my appointment with you on ??/??/???? regarding your wish to reduce my ???mcg dose of T3.
During the appointment I told you that I did not want to reduce my dose of T3 because I feel good on this dose. I feel well, I can do my job to the best of my ability and I can contribute properly to my family life. I am not as irritable or fatigued. I can think clearer. I told you that my signs and symptoms return on a lower dose. You said that you wanted to reduce my dose because my Thyroid Stimulating Hormone (TSH) was too low and thereby there is of a risk of Osteoporosis (OP) and Atrial Fibrillation (AF). I showed/told you about research that shows that this not the case. (See appendix 1 attached.) I told you that you have no logical justification to reduce my dose of T3.
You did not carry out or refer me for an Electrocardiogram (ECG) test to establish a baseline or detect any abnormalities in my heart’s electrical activity despite your concerns about AF.
You did not refer me for a DEXA scan to establish a baseline or detect any abnormalities in my bone mineral density despite your concerns about OP.
You then reduced my dose of T3 to ??mcg.
Good Medical Practice
I am sorry to say that because you simply went ahead and reduced my dose against my wishes you did not comply with the preamble of the General Medical Council’s Guidance for Doctors Good Medical Practice 2013:
“The duties of a doctor registered with the General Medical Council”:
“Work in partnership with patients. Listen to, and respond to, their concerns and preferences. Give patients the information they want or need in a way they can understand. Respect patients’ right to reach decisions with you about their treatment and care.”
Mental Capacity Act 2005
During the appointment you did not assess me to determine if lacked Mental Capacity as laid out in section 3 of the Mental Capacity Act 2005. Therefore I am consider that you have assumed that I have mental capacity in accordance with section 1(2) of the Act.
Consent: patients and doctors making decisions together/Montgomery v Lanarkshire Health Board 2015
As I have, and you have assumed that I have, mental capacity to make decisions about my health, I am sorry to say that you did not follow the model in the General Medical Council’s Code of Practice Good Medical Practice Consent: patients and doctors making decisions together. This is important because the medical negligence case of Montgomery v Lanarkshire Health Board 2015 stated at paragraph 93 that following the model at paragraph 5 of Consent: patients and doctors making decisions together is a legal obligation.
The Guidance at paragraph 5 of Consent… states
If patients have capacity to make decisions for themselves, a basic model applies:
A. The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
B. The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.
C. The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.2
D. If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.
With regard to part A
I told you about my condition and that it is my experience that on a reduced dose of T3, my signs and symptoms will return.
You did not assess me for signs of over treatment or refer to my blood tests for T3 and or T3 for to see if they were over their reference ranges.
I showed/told you that there is research that shows that low TSH does not cause OP.
I showed/told you that there is research that shows that OP and AF more likely when T3 and Liothyronine (T3) are too low or too high.
I told you that I do not have signs or symptoms of hyperthyroidism such as palpitations, tremor, or sweating.
I told you that I get some of my information from the internet and patient support groups. Their Lordships and Ladyship in the Supreme Court in Montgomery v Lanarkshire Health Board 2015 said at paragraph 76 of the judgement:
“it has become far easier, and far more common, for members of the public to obtain information about symptoms, investigations, treatment options, risks and side-effects via such media as the internet (where, although the information available is of variable quality, reliable sources of information can readily be found)3 (and) patient support groups…It would therefore be a mistake to view patients as uninformed, incapable of understanding medical matters, or wholly dependent upon a flow of information from doctors.
The idea that patients were medically uninformed and incapable of understanding medical matters was always a questionable generalisation, as Lord Diplock implicitly acknowledged by making an exception for highly educated men of experience. To make it the default assumption on which the law is to be based is now manifestly untenable”.
I told you that you had no logical justification to reduce my dose of T3.
With regard to part B
You simply said that there is a risk of OP and AF due to low TSH. It has been shown that the risks of OP or AF is due to either too much or too little for the individual patient’s T3 and T3.
You did not quantify the risk of OP or AF in a way I could understand or at all. Therefore you have no adequately explained the options to me and the possible risks or benefits of staying on my dose, raising my dose, changing to Liothyronine (T3) or having a mixture of T3 and T3.
By not quantifying the risks of the above options to me personally, you have not given me the opportunity to weigh the risks and benefits of each option as required in part C of the GMC’s model.
You did put pressure in me to accept your decision by simply saying that you are reducing my dose.
With regard to part C
I have the mental capacity to make decisions about my health. I have read the research referred to above. I understand that the risk of OP and AF is from having too much or too little T3 and/or T3 for me as an individual. I don’t have the signs or symptoms of too much T3 and/or T3. My blood tests show I am not outside the reference range for T3 and/or T3. I have weighed up the theoretical and mostly unfounded risks of staying on my dose against the actual risks of lowering my dose. I have also considered the non clinical factors of lowering or remaining on my dose, such as the impact on my family life and work life if my signs and symptoms recur, as they will do if my dose is reduced.
I have assessed the risks of OP and AF by lowering my dose to be much higher than remaining on my dose.
I have decided to remain on the dose I am on.
With regard to part D
Remaining on my dose is clearly of overall benefit to me. I feel well, I can do my job to the best of my ability and I can contribute properly to my family life. I am not as irritable or fatigued. I can think clearer. Reducing my dose will result in harm to my health by the return of my signs and symptoms. It will also negatively impact on my work, private and family life. Further, as described above, there is no reliable evidence that low TSH actually causes OP or AF.
If you are still of the opinion that you want to reduce my dose to ??mcg, please explain how remaining on my current dose would not be of overall benefit to me in writing. It is important that you quantify the risk of OP or AF to me as an individual in your written explanation. Good Medical Practice at paragraph 47 says that you must treat me an an individual. Please be aware that there is another body of responsible medical opinion that agrees with maintaining a dose of thyroid medication that suppresses TSH without causing thyrotoxicosis and had been recognised as such by the General Medical Council.
Lack of logic to reduce dose of T3
I am unaware of any guidance to unilaterally reduce a patients dose of T3 and/or T3. Such guidance does not appear in the British Thyroid Association’s statement on the management of primary hypothyroidism. Recommendation 7 states:
“Although fine tuning of serum TSH levels within the reference range may be indicated for individual patients, deliberate serum TSH suppression with high dose thyroid hormone replacement therapy (serum TSH <01 mU/L) should be avoided where possible as this carries a risk of adverse effects such as cardiac rhythm disorders including atrial fibrillation, strokes, osteoporosis and fracture (1/++0). As an exception, patients with a history of thyroid cancer may require deliberate suppression of serum TSH if there is a significant risk of recurrence”.
It does not recommend that ALL patients on thyroid hormone replacement therapy unilaterally have their dose reduced. It states “where possible”.
This recommendation is now out of date following research that low TSH is not a factor in OP or AF but excess or low T3 and/or T3 is. To blindly follow this out of date statement is in conflict with a doctors legal obligation to follow the model consultation in Good Medical Practice Consent: Patients and doctors making decisions together.
The Royal College of General Practitioners Curriculum states at 3.17 that a GP should:
“Recognise your central role as a primary care physician in managing diabetes mellitus and hypothyroidism”,
and
“Recognise the potential for abuse of thyroxine and propose strategies to reduce dosage”.
I can assure you that simply being on a dose that makes me well is not abusing thyroxine especially if my blood tests for T3 and T4 are within their reference ranges. Any strategy to reduce dosage must be logical. This is confirmed by the medical negligence case of Bolitho v City and Hackney Health Authority 1993 which states that a doctor’s actions must be logical even if it is supported by a responsible body of medical opinion. For the reasons above, I do not believe that your action to reduce my dose without any evidence or following the BTA statement contrary to my well evidenced and argued wishes to remain on my dose of T3/T3 is logical.
If you have concerns about me suffering from AF or OP please refer me to a cardiologist for an ECG test and an Orthopaedic specialist for a DEXA scan.
I hope you reconsider your decision to reduce my dose of T3 and/or T3 and restore it to the level that makes me feel well and contribute to my work and family life. I value my actual health more that an unfounded and unquantified potential risk in the future so much that if my dose is not maintained or restored, I will take this matter further by way of complaint to the Clinical Commissioning Group, the General Medical Council or by a claim for negligence.
Yours Sincerely
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Appendix 1
Thyroid Stimulating Hormone and Bone Mineral Density:
Journal of Bone and Mineral Research, Vol. 33, No. 7, July 2018, pp 1318–1325
DOI: 10.1002/jbmr.3426Evidence From a Two-Sample Mendelian Randomization Study and a Candidate Gene Association Study
Nicolien A van Vliet,1 Raymond Noordam,1 Jan B van Klinken,2 Rudi GJ Westendorp,1,3
JH Duncan Bassett,4 Graham R Williams,4 and Diana van Heemst1
1Department of Internal Medicine, Section of Gerontology and Geriatrics, Leiden University Medical Center, Leiden, the Netherlands
2Department of Human Genetics, Leiden University Medical Center, Leiden, the Netherlands
3Department of Public Health and Center for Healthy Aging, University of Copenhagen, Copenhagen, Denmark
4Molecular Endocrinology Laboratory, Department of Medicine, Imperial College London, London, UK
Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy
Robert W. Flynn, Sandra R. Bonellie, Roland T. Jung, Thomas M. MacDonald, Andrew D. Morris, and Graham P. Leese
Ninewells Hospital and Medical School (R.W.F., R.T.J., T.M.M., A.D.M., G.P.L.), University of Dundee, Dundee DD1 9SY, United Kingdom; and School of Accounting, Economics and Statistics (S.R.B.), Edinburgh Napier University, Edinburgh EH14 1DJ, United Kingdom
Context: For patients on T3 replacement, the dose is guided by serum TSH concentrations, but some
patients request higher doses due to adverse symptoms.
Objective: The aim of the study was to determine the safety of patients having a low but not suppressed serum TSH when receiving long-term T3 replacement.
Design: We conducted an observational cohort study, using data linkage from regional datasets between 1993 and 2001.
Setting: A population-based study of all patients in Tayside, Scotland, was performed.
Patients: All patients taking T3 replacement therapy (n 17,684) were included.
Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (4.0 mU/liter).
Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10 –2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes [hazards ratio: 1.1 (0.99 –1.123), 1.13 (0.88 –1.47), and 1.13 (0.92–1.39), respectively].
Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T3 to have a low but not suppressed serum TSH concentration. (J Clin Endocrinol Metab 95: 186–193, 2010)
I wish you weren't on the other side of the country from me; I have a wonderful NP that actually UNDERSTANDS symptom treatment, and not just blood work. My TSH is at .01, and she is fine with it. My other numbers are optimal. She always ASKS if I need a med change, or if I am feeling good---I am finally very happy at 90mg of Armour and 37.5 of Cytomel/liothyronine. It's been quite the journey getting here (3+years of trial and error)---but the closest to great I felt before now was 180 Armour. And I still have a thyroid---I just don't convert.
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