I was diagnosed with hypothyroidism (Hashimoto’s) when I was about 30 years of age, but symptoms had been developing since I was 28. Over the following 7 years, I went from one doctor to another, from one endocrinologist to another. I was put on Levothyroxine (Synthroid) at various doses. I was tried with natural desiccated thyroid at various doses, then T4/T3 combos. I was even given some of these medications with hydrocortisone, as I had also developed severe low cortisol. In all cases, I was pronounced ‘correctly treated’ because my lab tests were apparently normal. However, all my original symptoms persisted.
I went gluten-free, grain-free, and dairy-free for several years but this did not alleviate the whole range of symptoms which included debilitating fatigue, terrible gut and digestive system issues, low blood pressure, and a general inability to cope with life. I could not function as I had done previously. Life seemed impossible to cope with.
It got to a point where the doctors were no longer interested and they even had the rudeness to say that something else was now causing all the same symptoms but it was no longer hypothyroidism! By this stage, the disease had wreaked havoc on my body. The low cortisol alone had caused me to lose about 35% of my body weight. I was so exhausted I was virtually an invalid. I also lost the career that I loved. Sadly, various relationships were also damaged.
I took matters into my own hands after about 7 years. The Internet was only just starting, so I bought endocrinology books – a lot of them! I taught myself. My background is in science so I did not find it difficult. I learned that it was still hypothyroidism that was causing my symptoms. Something had altered in my body and I felt sure that I needed more T3 and less T4, so as not to rely on the conversion of the T4 into the active form (T3).
The bottom line is that after about 10 years had elapsed I was on T3-only treatment with no T4 component. I had also found a novel way to regulate cortisol using the T3 and it worked. I began to recover. I no longer needed to be on a restrictive diet because all my digestive issues cleared up once I was on the right thyroid medication. I had been so ill for so long that full recovery took a few more years as I had to build myself up and get fit again.
Once on enough T3 medication, had almost no FT4 in my blood test results and low TSH. I have never missed the FT4 – it is not a real thyroid hormone. I now know that T4 does not connect to the cell nuclei thyroid receptors. It is mainly present as a means of producing T3 through conversion – but so often this does not work well enough. Plus sometimes, the thyroid patient needs only T3 therapy in order to recover.
As a result of all of this, I have written 3 books that cover many aspects of thyroid diagnosis and treatment: Recovering with T3, The CT3M Handbook, and The Thyroid Patient’s Manual. I fully understand what had happened to me and why I did not respond to any of the other thyroid medications. Perhaps that can be for a future blog post though.
I am now over 60 years of age and have been living well on T3-only for 20 of these. I am fit and healthy, with no signs of either hypothyroidism or hyperthyroidism.
These are some of the main lessons that I learned throughout my own journey:
1. Do not believe all you are told by doctors OR other patients. This includes diagnosis, thyroid laboratory test interpretation, vitamin and mineral levels, and whether they are okay or not. Yes, take it on board, but always check things out if there is the slightest doubt OR it is easy to verify. There are so many thyroid forums that exist these days. It is possible to get bad advice on these too. Use my books! Take all views on board but do not just believe everything you are told.
2. Always get copies of your test results – with the actual result numbers, the reference ranges, and the units they are measured in. Frequently, you need to check if what you are being told about these results is actually correct or not. Insist on getting the actual results – not a statement that they were okay. They are often helpful later on when you are trying to work out what happened at what point in your illness. Try to stick to the same laboratory each time as different labs can produce slightly different results. Results often vary a lot depending on what treatment you are on at the time of the lab test, so this will become part of the chronological history of your diagnosis and treatment progression. Because of this, always make a note of the exact thyroid medication you were on, including doses, at the time of the test. Note the timing of your thyroid medication as this can influence the test results at the time of the blood draw. Note down any other supplements or medication you were taking at the time. This information can end up being invaluable to you and your doctor at a later time.
3. Do your own research. Read books. Use my books and website and other peoples’ resources as references.
4. Knowledge is critical – so gain it as FAST as you can. Knowledge allows you to gain some control of the situation vs feeling like you are on a raft, adrift on a stormy sea. Gaining more control gives you the ability to make better decisions and to ask better questions of your doctor(s). Getting knowledge FAST means you have a better chance to get well FAST. Getting well quickly is the best way to avoid the kind of damage and havoc that this disease can cause when it is not properly treated. A speedy recovery is the best way to prevent career damage, relationship damage, and other related health issues from developing.
5. Do not stay with a doctor who is not supporting you. That is a recipe for staying sick. There are usually solutions. You really need to have a good working relationship with your doctor, so that you know they are actually listening to you and understand how you are feeling. You also need to feel that they are doing their very best for you. It is hard enough to recover from hypothyroidism without feeling like your doctor is letting you down. In particular, if a doctor is managing your health based on keeping TSH in range and FT4 in range and is not concerned with your low FT3 (even if it is in the reference range), then that doctor is likely to be keeping you sick. FT3 is the most important lab test result and usually, it needs to be high enough for you as an individual for you to feel well. This needs to be done without very high Reverse T3. Sometimes this requires less T4 medication and more T3 medication. Sometimes it needs to be done with low TSH – contrary to many doctors this does not mean you are hyperthyroid (being on thyroid treatment is an entirely different situation to being on no thyroid treatment when a low TSH often does indicate hyper).
6. Never just turn your health over to someone else. You need to remain in the driver’s seat to a certain extent. It is your body and you need to own it and look after it during your return to good health. If you are not happy with the opinions or treatment you are receiving from your doctor, do not simply accept it. Start looking for a more supportive doctor and seek input from others regarding this, so that you have some evidence that the new doctor will be more helpful.
7. Never, ever, give up!
8. Never, ever, give up! I cannot say this often enough. It is so important. Sometimes it can be a huge struggle to get well, given the relatively poor diagnosis and treatment policies that seem to exist for thyroid patients these days.
The next two are suggestions rather than lessons:
9. Read The Thyroid Patient’s Manual. I wrote it to help people gain knowledge quickly and to enable them to see the entire picture of the thyroid hormones in the context of other systems in the body. I wanted to give all the key information related to diagnosis and treatment, especially since so much new research has been done over recent years. The goal of the book is to help people recover FAST – before too much damage occurs in their lives.
10. Read Recovering with T3 and The CT3M Handbook if you need to use more than a small amount of T3. Having the knowledge to correctly use T3 is critical if you are one of the few who has to go this route. Sadly, many doctors simply do not know how to use T3 safely and effectively – but they think that they do. They often believe that adding a little T3 will actually result in higher FT3 but this is often not true. Frequently, the person ends up with some improvement for a short time and then FT3 sinks back to the previous level. My books and website explain why this is and how to fix it.
I hope these lessons help you avoid having your thyroid issues being poorly treated.
Getting well fast should be your goal!
Best wishes,
Paul
(Updated in March 2023)
Great summary! Just discovered you and your blog. I’m already reading the second book, mainly because of my grown up daughter, who is suffering since the age of 5, or even earlier, with urticaria…. The best 2 days in her life in the past 10 years were when she started taking T3, only 2 days, unfortunately not 7…. But that gave us the hint through your blogging and writing! We will have to look out for a new doctor. Best wishes! Maarit from Northern Germany, I never ever give up!
Hi Maarit, thank you for the great comment. All my best wishes for your daughter’s recovery.
Good luck!
Paul
Hi Paul, love this article, my daughter has not ever received the proper treatment,
Free T3 2.27 average 2.00-4.40
Free T4 0.60 0.67-1.24
TSH 1.62 0.34-4.20
Total T3 0.73 0.87-1.78
Total T4 7.63 4.50-12.23 saying this is euthyroid
symptoms: depression, low cortisal, hair loss, very anxious, very tired. Has been on synthyroid for a long time..
can you make a suggestion on this , finding help is really difficult with our socialized medical system and help would be so important to us
Barbara Rathbun..follower on FB. thank you so muc
Ok. TSH is in range but they likely don’t want to increase any thyroid medication because of TSH.
TSH can be low due to many issues though – so you need to ignore that and focus on the VERY LOW FT3.
FT4 is LOW also.
I’m not surprised she is depressed and hypothyroid.
She needs medication that raises FT3. This might be T3 or T4 or T4/T3 or NDT.
I don’t know even if she is on thyroid meds.
But TSH needs to be ignored and the totally terrible level of FT3 needs to be addressed as well as symptoms.
She may need a different doctor – she probably does need a different doctor if he/she doesn’t react to her symptoms and lab results.
Good luck Barbara!
Best wishes, Paul
Dag Paul,
Kun je me raad geven wat mijn volgende stap is?
laatste bloedonderzoek op 9/2/23 nuchter om 9 uur in de ochtend genomen :
TSH 0.22 ( 0.27-4.2)
FT4 15.8 (11.0-24)
FT3 4.9 (3.7-6.1)
vrij cortisol ochtend 3.53 (2-12)
ACTH 23.7 (7.2-63.3)
Ik ben begonnen met 25 mg tirosint in september 2022 opgebouwd naar 75 mg tirosint. Vanaf 28/1/23 ben ik begonnen met T3 medicatie 20 mg en tirosint 75 mg. Vandaag reeds 7 weken op T4 75 mg en T3 20mg. Om 5 uur in de ochtend 10 mg T3 en om 15 uur 10 mg T3. Ik sta op om 5u30.
Ik heb al 20 jaar een FT3 van rond de 3.
Blijvende symptomen van duizeligheid, schommelende bloedsuiker, moe, geen energie,…
Zou ik de T3 mogen verhogen? Hoe verdeel ik de T3 dan over de dag of nacht?
Dank voor je antwoord.
Mvg
Leen
Please use Google Translate as I had to do.
You need to test Reverse T3 also – so you can see how poorly you are converting the T4.
Also, test morning blood cortisol at 9:00 am – if that is also extremely low, you should get referred to an endocrinologist who would do a Synacthen test for you (to rule out Addison’s disease).
T3 is usually best dosed 3 times per day. In your case, I would suggest 3:00 am in the morning, 10-11:00 am and 3-4 pm.
However, unless you know how poorly your T4 is converting to T3, you won’t really know whether to reduce the T4 medication and increase the T3 or what other choice to make.
Cortisol is also a huge issue – so this needs testing thoroughly. Cortisol might even be the biggest issue.
Best wishes,
Paul
the ACTH 23.7 (7.2-63.3) is the Synacthen test with me
the free cortisol morning 3.53 (2-12) is the morning blood test of cortisol in me
Can my cortisol be resolved by taking more T3? As well as my daily dizziness that I’ve had for years?
My endocrinologist says I can’t convert T4 to T3 properly. When I only took T4 medication my T3 only went up a little bit.
Thanks for your reply
Leen
Leen,
Often taking T3 helps improve cortisol. But usually, it needs a CT3M dose if the cortisol is low.
I would use the Recovering with T3 book protocol and a CT3M (nighttime dose of T3).
You may be better off without taking ANY T4 meds if you convert poorly. T4 is not needed. T3 is the active hormone.
But you’d need to use the book protocol.
Best wishes, Paul
Hello Paul,
I wondered if you could kindly offer me some advice. I am such a complex case, am 61 now, hypo for around 18yrs, post meno 10yrs, self tested privately with Hashi’s 2016. Researched, learned as much as I could, spent a lot of money of many different tests. Worked with FD’s on gut issues. GP is rubbish along with Endo’s I have seen. 2016. Had body scan and pit scan looking for tumours. Endo just told me to go away and get my stress levels down! 4 point saliva spit test revealed waking cortisol extremely high. T3 always low in range. Endo at time could see I didn’t convert well (had rt3 tests done too). Wouldn’t prescribe T3 because of high levels of anxiety which has not left me since 2016 when my body crashed. Joined thyroiduk site 2016 and many said I needed T3 which is why I felt so ill. Started on 5mcg and worked up to 10mcg where I have stayed along with 125mcg T4, because I was working on gut issues and hrt hoping to find root cause of debilitating anxiety, was advised to increase T3 to 15mcg but never did. I test privately every few months and T3 has also been too low in the range and advised to increase but I never did. Waking anxiety is debilitating and for most of every day since 2016 and I am sure it’s still mainly due to high cortisol. I am still where I was in 2016 with no signs of improvement, have been suicidal several times. got obsessed in learning and testing so gave up until recently. I am wondering whether T3 suits me at all because I find it stimulating even when I split dose the 10mcg. Usually take my thryoid meds in the mornings and small dose T3 around 5pm but I NOW believe from what I have been reading that my waking dose may well be increasing my high cortisol levels, hence worsening my anxiety. I don’t know what to do any more, I live on my own with no friends, anxiety has moved to getting agoraphobia. I have tried so hard to help myself since 2016 but feel defeated, ill and just want to go. Last 3 tests below. Suspicious of results as always been on the same dose and NHS test showed my T3 at a decent level which all my private testing with Blue Horizon has never shown. My first antibody test showed them at 4,000 so I have done well to get those down since 2016. Apart from moving my T3 dosing to later in the day when my high cortisol settles a bit and then take my T4 at night (as I believe high cortisol hinders conversion), I really don’t know what to do. I don’t live anymore, I just exist in fear and flight mode every single waking hour. If I could get on top of the anxiety, depression and fatigue which is debilitating, I could find some level of living again, but I am so frightened of my future right now staying where I have been since 2016. Thank you. Jennie
** April 2023 **
Magnesium 0.90 (0.66 – 0.99 mmol/L)
Cortisol (Random) H 534.0 (6am – 10am 166 – 507 nmol/L)
TSH L 0.03 (0.27 – 4.20 mU/L New range & unit)
T4 Total 124.0 66 – 181 nmol/L
Free T4 21.8 (12.0 – 22.0 pmol/L)
Free T3 4.46 (3.1 – 6.8 pmol/L New range)
Anti-Thyroidperoxidase abs H 41 <34 IU/mL New units
Anti-Thyroglobulin Abs 52 24 (>5.40)
Ferritin 76 (10-291)
Serum cortisol 9am 602 (145-619)
———————————————————–
**Sept 2022 ** – Blue Horizon
CRP 0.52 <5.0 mg/L
Ferritin 101.0 (13 – 150 ug/L
Magnesium 0.91 (0.66 – 0.99 mmol/L
Cortisol (Random) 235.0 6am – 10am 166 – 507 nmol/L New range
TSH L 0.04 (0.27 – 4.20 mU/L New range & unit)
T4 Total 124.0 66 – 181 nmol/L
Free T4 18.3 (12.0 – 22.0 pmol/L)
Free T3 3.89 (3.1 – 6.8 pmol/L New range
Anti-Thyroidperoxidase abs H 48 <34 IU/mL New units
Anti-Thyroglobulin Abs 56 <115 IU/mL New units
Vitamin D (25 OH) 60 Optimal 75-200 nmol/L
Vitamin B12 H 704 (145 – 569 pmol/L)
Serum Folate 35.20 (8.83 – 60.8 nmol/L)
Jennie,
I never do detailed responses to questions like this on my public website page.
Plus it is too long a question to do in writing.
You can email me (if it is a lot shorter) on paulrobinsonthyroid@gmail.com
You also need Reverse T3 – for sure.
See the Platinum Thyroid Test (30% discount code included):
https://paulrobinsonthyroid.com/thyroid-blood-testing-with-blue-horizon-medicals/
I can’t say anymore on this public site.
Best wishes, Paul