I have described hypothyroidism to a lot of people as being the illness that is the ‘death of a thousand cuts.’
Hypothyroidism is often a slow process that gradually wears the sufferer down. Sometimes the symptoms just slowly creep up on the person. To begin with they may not even notice the symptoms. Issues, like gaining weight, feeling tired, getting depressed, difficulty in thinking straight and feeling cold, can be so general that the individual may think that they are just working too hard, or have too much stress etc. Months or years can go by as the symptoms worsen and new ones appear before they eventually might get a diagnosis of hypothyroidism.
Even when a proper diagnosis has been made, it is common for poor treatment to leave the thyroid patient with many or all of the original symptoms. The quality of care may be quite good for those patients that respond well to Levothyroxine (T4 only). But for the large numbers of patients that find T4-Only does not alleviate their symptoms the quality of care can be dreadful. The life that the patient used to have before hypothyroidism can be lost. Precious time simply vanishes after more and more visits back to the doctor or endocrinologist. Eventually, many patients look back with sadness at multiple years or even decades during which they have suffered debilitating symptoms.
During this time, the thyroid patient often has more thyroid blood tests done by their doctor or endocrinologist (frequently not including FT3 and reverse T3). Sometimes, increases in Levothyroxine (T4) are made and sometimes, the dose is lowered. Usually, any improvement is very short-lived. The T4 dosage often ends up being cycled up and down many times over years, with little or no benefit to the thyroid patient. Over time, it is common for the thyroid patient to get more ill. This frequently stops the thyroid patient from enjoying their life and living it to the full. It can leave the patient severely debilitated (it did this to me and I know it does to many others). In this way, more of the person’s precious life is lost.
Worse still can be the collateral damage that hypothyroidism frequently causes. This damage can be to the thyroid patient’s career or job, or to their relationships with friends or family members (partner, children etc.). This type of collateral damage only occurs if the hypothyroidism has not been successfully and quickly treated. Sadly, this happens all too often.
Recovering from hypothyroidism as fast as possible is the only effective way to avoid the ‘death of a thousand cuts.’
This requires a correct and early diagnosis. Critically it has to be followed by really effective treatment that focuses on the clinical presentation of the thyroid patient (symptoms and signs), as well as comprehensive thyroid laboratory tests (not just TSH and FT4, but also FT3 and reverse T3). Other factors also need to be examined and corrected, like vitamin and mineral levels.
It ought to be straightforward, but all too often it is not.
The current approach that most doctors and endocrinologists use during thyroid treatment is a broken paradigm. Most of them believe that TSH alone can be used to assess the right dosage – WRONG! Low or suppressed TSH when on thyroid treatment is also believed to represent hyperthyroidism in all thyroid patients – also WRONG! This latter prevents many thyroid patients from ever being given a large enough dosage of thyroid medication to effectively treat them and eradicate symptoms. Many doctors think that TSH and FT4 are definitely enough to assess treatment – WRONG! A lot of them do not believe that laboratory testing of FT3 (the active hormone) is essential – VERY WRONG! Most of them believe that T4 medication always converts well and works – WRONG AGAIN! The focus on TSH and FT4, without attention to FT3, can leave many patients either un-treated, or inadequately treated. I see this time and time again. I have spoken to thyroid patients who have developed other serious health issues as a result of this, e.g., coronary heart disease, or diabetes.
The current broken paradigm assumes we are all robots that work identically and always convert T4 medication perfectly. The current treatment approach is keeping many thyroid patients sick! Some thyroid patients are aware of these issues and even know what they require – they simply cannot persuade their doctor or endocrinologist to test them properly or treat them with the correct medication. However, the vast majority of patients do not even realise that they are being treated poorly. These patients often just believe what they are told. This might be that they are just unfit, or getting older, or have chronic fatigue syndrome, or are depressed. So many different excuses are used to avoid the obvious answer – that the treatment is not working.
The thyroid patients that suffer most are those that do not do well on Levothyroxine (T4). This is extremely common. One common reason for this is that doctors often never raise the Levothyroxine to a high enough level because they fear a low TSH means that the patient is hyperthyroid. Research has shown that low TSH is not a concern if the patient’s FT3 is over-range, and the patient has no hyperthyroid signs or symptoms. Another major problem with Levothyroxine treatment is that many thyroid patients do not convert T4 to sufficient amounts of the active T3 hormone. Only T3 does any real work in the body and the thyroid patient needs enough T3 for them as an individual. Simply having FT3 in the reference range is not sufficient. FT3 needs to be in the right part of the reference range for the person. Sometimes, even an okay looking FT3 may not be sufficient because the individual patient needs a higher FT3 level in order to feel completely well.
Sometimes the thyroid patient needs a T4/T3 combination that is tuned with the right amount of T4 and T3 for them as an individual. Occasionally, the thyroid patient needs mostly T3 and only a little T4 medication. It is also possible that someone can only get well if they are given T3-Only medication and no T4 at all – this was my own situation and I know that many other thyroid patients have found this to be the case for them too.
I wrote The Thyroid Patient’s Manual because I wanted to provide a very practical, easy to use manual to help patients understand whether they have hypothyroidism and to provide a very practical guide on how to recover as fast as possible. In the book, I try to encourage the thyroid patient to ‘get in the driver’s seat of their own health’ and not completely hand their health over to their doctor. This does not exclude having a good working relationship with their doctor. However, it definitely does mean gaining enough understanding of hypothyroidism and how to treat it effectively, so that the thyroid patient can be an active partner in any discussions about changes in treatment. The book will give the reader enough information to understand their situation and to assess what their next steps ought to be.
In my own case, I lost at least ten years of my life from age 30 to 40 through hypothyroidism. I lost my career and my marriage. Worse still was the damage to the relationship with my children. My own ‘death of a thousand cuts’ has spanned from the start of the disease when I was about 30 and has continued due to the collateral fallout. I still see and feel the damage in my own life due to being incorrectly treated for so long by so many doctors and endocrinologists. Many years ago, I blazed with anger about this bad treatment. This anger helped me to write the Recovering with T3 book. These days, I just feel sadness at what happened to me. I am also very disappointed that the knowledge that I gained and expressed within my books has not been taken up and used by many doctors or endocrinologists. However, I find some consolation in the way that so many patients manage to reclaim their health using my work.
The above is why I am so passionate about the need for a new paradigm of thyroid treatment that provides the fastest possible route for patients to get diagnosed and get correctly treated as unique individuals. Only by getting well fast can the ‘death of a thousand cuts’ be avoided.
The Thyroid Patient’s Manual is effectively Book 1 in the Recovering from Hypothyroidism series. The Thyroid Patient’s Manual was written specifically to help thyroid patients recover quickly. The other two books in the series (Recovering with T3 and The CT3M Handbook) are mainly aimed at those patients who need to use T3-Only or T3-Mostly therapy or who need to deal with low cortisol issues. Articles on Hypothyroidism adds a lot of information to the series that I have developed and acquired over many years. The Recovering from Hypothyroidism series should help more thyroid patients get ‘better, faster’, and avoid ‘the death of a thousand cuts.’
I wish you what I wish readers at the end of The Thyroid Patient’s Manual:
“Get well and enjoy your life!”
Best wishes,
Paul
Thank you Paul.It looks like “you’ve been reading my mail” so to speak.After two years fighting with my GP over my thyroid treatment and getting my knickers in a twist I have decided to calm down and take control of my own health .In Aussie the TSH blood test does not include a test for Hashimoto which I think I have .I have been on Thyroxine for three years now and the best I ever felt was when I stoped taking the meds but my TSH went up to 46.5.At the moment.Yes really🤪.My TSH is .38 at present but I still feel awfull.
High TSH looks like an issue Noel.
Get FT4, FT3, TPOAb and TGAb tested – one way or another.
Taking T4 meds and having low TSH doesn’t make you well.
Have a read of my The Thyroid Patient’s Manual book.
Best wishes, Paul
Thank you for all the information and help you have given to hypothyroid patients. I also suffered for many years before being able to get a doctor to prescribe a source of T3 med. After some tweaking I felt better that I could ever remember. Since that time I have done extensive research, and co-authored a paper that might be of interest and use. I know I am preaching to the choir with you, but by looking at the Total Thyroid Process, we clarify the statistical impossibility of TSH ever being an accurate predictor of a hypothyroid patient’s status.
https://thyroiduk.org/further-reading/managing-the-total-thyroid-process/
Beyond that I am very pessimistic about any new paradigm being adopted, even though badly needed for effective diagnosis and treatment. Even if doctors know better than current practices, or learn what is really needed, they seem adamantly opposed to change. There seems to be several reasons for the resistance: 1. Current practice is expedient and easy, based predominantly on a TSH test. 2. Doctors are reluctant to consider symptoms, since they like to say that a symptom is nonspecific (however multiple symptoms typical of hypothyroidism are revealing). 3. Doctors feel peer pressure not to change. 4. The total resistance to straying from the Guidelines has resulted in a pseudo standard of care such that Doctors fear that any change would expose them to charges of malpractice. 5. Conflicting scientific evidence is ignored or explained away. 6. With all the ailments resulting from undiagnosed or inadequately treated hypothyroidism, for which the pharmaceutical companies have profitable drugs to sell us, I have wondered what influence that might have on resistance to changing the current paradigm.
It seems the only possibility of achieving the necessary change is through the AACE/ATA. And they have carefully protected themselves by statements such as “The guidelines are not inclusive of all proper approaches or methods, or exclusive of others, the guidelines do not establish a standard of care and specific outcomes are not guaranteed. Treatment decisions must be based on independent judgment of health care providers and each patient’s circumstances. A guideline is not intended to take the place of physician judgment in diagnosis and treatment of particular patients. We encourage medical professionals to use this information in conjunction with their best clinical judgment.” Of course all of this is ignored by most doctors , along with symptoms, and Free T3 and Reverse T3. I even had a former officer of the AACE tell me the Guidelines did not prevent a doctor from clinical diagnosis and treatment. But the Guidelines effectively do just that: establish a standard of care and roadblock to any effort to effect change.
There is more than ample current scientific evidence of the need to change the paradigm, including even a 2018 ATA survey of 12,146 patients who expressed “prominent dissatisfaction” with their current treatment and their doctors knowledge. Yet, there was no real ATA attempt to explain the level of dissatisfaction, nor apparent commitment to find out the causes. They won’t even respond to inquiries about it. So you can see the reasons for my pessimism about meaningful change. I would be very happy to hear of any suggestion for getting the change we all know is so badly needed.
Thank you very much for your thoughtful message Mel.
The paper is very clear also. I agree with everything in the paper of course and in your message. I also very much like your suggested definition of hypothyroidism, “inadequate T3 genomic effect in tissue throughout the body.” I wish I had used that in my first book, ‘Recovering with T3’. I actually used, “impaired cellular response to thyroid hormone”. Mine is slightly vaguer but I did actually mean the same thing.
We are clearly of the same view. I am not much of a politician or someone who has a good insight into how to move things forward. I think the endocrinology community are only ever likely to listen to people from within their own group unless there is a higher authority (political action?), that tells them that they have to. So, I tend to keep my head down on the battle to get any change to occur. Instead, I work directly with patients in an attempt to make their lives a little better.
I like you am fairly pessimistic. I had hoped many years ago to see big changes but now I am not sure I will see them in my lifetime.
Thank you so much for your comment and for the article. I agree with it all 100%.
Best wishes, Paul
I believe in you! Your public education to patients help the PT. to take a stand to the MD’s that we demand the time and attention to get it right! Public Education and Advocacy! Thank you, Mr. Robinson,
Thank you Teresa.
Paul
Dear paul .wonderful your work .i have had a bad road with hashimoto.just started to add t3 with 100 mg tirosint.i start to think clear !! Thank you r
Dear Win,
Thank you so much for your kind comment. I am very pleased that some of my work has helped you on your road to good health.
Keep up the good work with it.
Best wishes, Paul
Has there been any research done on post thyroidectomy.? It has been 40 yrs for me and now at 77 yrs and Euthyrox100ug and Tertroxin 20 micro for the last 20yrs -my symptoms are extreme especially fatigue – HELP please – Cape Town SA
Plenty yes.
One of the major things to keep in mind is that the thyroid gland is the most important converter of T4 to T3 in the body.
When you lose the thyroid you permanently lose a large capacity to convert T4 to T3, plus the thyroid glands own T3 production.
This blog post lists many research papers that are useful – see numbers 15 and 16 in particular:
https://paulrobinsonthyroid.com/collection-of-thyroid-research-papers-for-easy-access-for-thyroid-patients/
Sometimes more T3 is required (even if TSH is suppressed). Getting FT3 higher is usually the goal as only FT3 tracks symptoms:
https://paulrobinsonthyroid.com/only-free-t3-ft3-tracks-changes-in-symptoms-during-thyroid-treatment-research/
Best wishes, Paul
Good morning Paul,
I just bought your 3 books but I was wondering if dizziness is a symptom of Hypothyroidism. I have been trying to find that right dose of T4/T3 for some time now and it seems when I stop the T3 the dizziness subsides some but I still feel awful (fatigue, brain fog) I also have low cortisol. Have you seen this with anyone else?
Dizziness is a low cortisol symptom.
Using the T3 in the presence of low cortisol can make cortisol lower.
The Recovering with T3 book explains how to use T3 to help raise low cortisol – the Circadian T3 Method (CT3M).
More T3 and less T4 meds can also help.
It is likely the cortisol though – not hypothyroidism.
Best wishes, Paul
What is some solutions for an elderly 86 year old female with mental illness history and in dementia and now has atrium tachycardia with post covid? I wonder with all the drugs put in the body with lack of nutrition for post covid patients. I take dissicated thyroid for a person in my 40s but the endocrinologist said it would be too strong of a medication for an elderly person my mom’s age who is immobile and in bed or in wheelchair just to sit up. The y
TSH
Results 54.4
Range of normality 0.32 to 5.04 mu/L
Free T3
Result `1.6
Range of normality 3.00 to 5.90 pmol/L
Free T4
Result 10.7
Range or normality on tests 10.6 to 19.7 pmol/L
She is way too high on TSH and low on T3 and T4. I give natural herbs for her brain and gut and she takes a multivitamin with some minerals and antioxidants. I wonder what would be a resolution. She take levothyroxine of 50mcg for T4 I was told.
Hi Jeanie, that’s a sad situation.
Her doctor appears to be ok with leaving your mother in a very hypothyroid state.
The safest approach with thyroid medication would be to have small step increases in T4 meds and monitor the labs.
By small, I mean no more than 25 mcg increments. Obviously, it depends on how serious her heart issues are but low thyroid hormone is as much of a risk for heart problems as too much thyroid hormone. She has plenty of room to increase FT4 and if higher then more of it might get converted into FT3.
Given the labs, I don’t see any supplement regime addressing those.
However, testing B12 might be helpful, as people can be left with B12 absorption and storage issues post Covid – I know as I was. It was so bad for me that it significantly lowered my red blood cell count. I now do regular B12 injections.
Good luck!
Best wishes, Paul
Hi Paul
Thanks for your response! Dr. Dahl and endocrinologist decided to give my mom 200 mcg weekly instead of 50 mcg daily. Which mean instead of 350 mcg weekly she is down to 200mcg weekly. What is the logic of this?? Is it that she should be taking more not less dosage week? I am deeply troubled with the horrific care and communication in the medical care system. What could happen if my mom get lower dosage of medication or none at all? Stroke, heart attack, cancer, mental decline or death? Canada medical care is scary to death.
I am thinking.. what would be the maximum dosage an elderly would normally take per week and per day? She does take tables a multivitamin Centrum Forte and tablet of B12 and D at very low dosage that I am unsure of. However, to absorb the medication, the gut health has to be good too?
She had skyhigh B12 blood test at one point (as I have too but not due to covid) and wonder if there is a way to absorb nutrition better. I have asked for her to be given probiotics and apple cider vinegar tablets for stomach acid concerns. I am not sure if this would help with her absorption on a cellular level where it go in and out of the body?
Btw, my mom did get a iron transfusion just last month due to her anemia which I believe assisted with her not having easier to find blood vessels other than just to her age.
Do you have any suggestions otherwise for the blood test results I mentioned earlier? How about iodine or selenium or other minerals or vitamins? Should she not have a higher dosage of levothyroxine, not lower? Should she not take T3 meds or dissicated thyroid meds as another option with the T4 meds?
Thanks for your time.
Jeannie
Hi Jeannie, no I don’t understand the logic of that either – you’d have to ask them. It seems the wrong direction – but maybe they have some plan that you aren’t aware of? It would need a discussion with them I suspect.
I don’t think any supplement would fix the very low thyroid hormone levels you showed me.
B12 will always be high if someone has been taking a multi-vitamin with it in. You have to be off all B12 for months to get a valid B12 level.
Red blood cell count and mean cell volume (in a full blood count) can often give insight as to whether there is a low cellular B12 issue.
RBC is often low and MCV is often high if B12 is low in the cells (which it can be even if blood B12 is high).
Sorry that things are so difficult.
Best wishes, Paul
Thank you, for all of your education and I appreciate and look forward to reading your books. I just wanted to share that in the 34 yrs I have had hypothyroidism (with a thyroidectomy) I am a witness that physicians are not willing to truly understand how this disease can sabotage ones life! Physicians only treat and lab test for the T4 and always want to provide Levo. I definitely have had to take my healing into my own hands as I feel like I a, fighting for my Life, to survive. I am working to try to “tweek” my condition to a stage of healing! Please tell me your opinion how do you think it is possible to find a physician who is willing to work like your saying; take the time to workout what works best for the patient, monitor and find success in helping the patient over the longevity!
Hi Teresa,
The only successful strategy I have seen (apart from just pure chance) is that of joining thyroid patient forums on line and asking other patients to private message you with the names, contact information of good doctors that you could see or visit. By asking other patients for recommendations and a little about how the doctor(s) work it is possible to determine beforehand whether they are likely to help you or not.
I actually wrote my books for patients and doctors. However, I put enough information in them that given access to prescribed thyroid medication the patient ought to be able to solve their thyroid hormone issue with the minimum of dosage management by any doctor. In the past 25 years, for example, I have never allowed a doctor to modify my thyroid hormone dosage. I have managed this very successfully on my own and without issues. The books have enough information for this.
Best wishes,
Paul
Hi Paul, I wanted to follow up on my prior message with a link to our latest paper. I think you will find it interesting and useful. We clearly identify the three basic assumptions on which the AACE/ATA Guidelines for Hypothyroidism are based, which have now been refuted by extensive scientific evidence. Since the unwarranted and unapproved standard of care for hypothyroidism (SOC) is based on the Guidelines, this means the SOC should be reviewed and amended as suggested in the paper.
https://thyroiduk.org/further-reading/a-patients-guide-to-the-diagnosis-and-treatment-of-hypothyroidism/
Thanks again for all you do for hypothyroid patients. Please use this paper any way you want to help spread the info.
Best to you.
Mel Rowe
Hi Mel,
It is a brief, simply-explained, to-the-point and altogether excellent paper.
I think it is really very good and I will in turn capture it within a blog post.
I myself recently had to see an endocrinologist about an issue that was not directly related to thyroid hormones. However, because I take T3 he naturally got suspicious and wanted to immediately assume that my low TSH was a relevant issue. It is not of course and I am entirely clinically euthyroid. The usual discussion, bordering on an argument ensued, and we chose to disagree and leave it at that.
Thank you Mel. Please pass on my thanks to both Rudolf and Peter as well.
Best wishes, Paul
Hi Paul is generic Cytomel good l have started taking Cytomel with .88 synthroid
Hi Carolyn, it is good if it is what you actually need.
Note: adding T3 medication does not always push FT3 up. See:
https://paulrobinsonthyroid.com/more-t4-t3-thyroid-medication-might-not-always-raise-patients-ft3-levels-in-thyroid-hormone-treatment/
Best wishes, Paul