I was diagnosed with Hashimotos in 2001 after years of symptoms no doctor could explain: high blood pressure difficult to control even with medication, hair loss, high cholesterol, weight gain and fluid retention. Doctors suggested I was eating too much salt, too much fat, not exercising enough...it took about five years before I had labs which confirmed below range FT4, a TSH of 19, and anti-TPO levels above 6000. FT3 never tested at the time.
Since then, I have read a lot, both about thyroid disease and related disorders such as adrenal fatigue. I have long been convinced it may not be enough to just take thyroid hormones when your whole endocrine system is messed up after being hypothyroid for years.
I was put on levothyroxine back in 2001 and have remained on it since. For years, I took 125 mcg daily. On 150 mcg daily, my doctor said I was borderline hyperthyroid and wanted me to reduce it to 125 mcg. Labs on 150 mcg:
TSH 0.9 (0.3-4.5)
FT4 15 pmol/L (9-19)
FT3 2,7 pmol/L (2.6-5.4)
I somehow convinced him to let me raise levo to 175 mcg daily. Labs (same ref ranges as above):
TSH 0.2
FT4 17
FT3 3.1
The doctor was getting nervous about my slightly suppressed TSH, but I told him I still did not feel right so managed to get him to agree to raise levo to 200 mcg daily. That was last September. Labs after four months on 200 mcg daily:
TSH 0.05
FT4 18.5
FT3 4.2
I had by then read about the importance of having optimal vitamin and minerals levels, so ordered private labs that confirmed several deficiencies: low vit A, B12, D, E and K, magnesium, zinc, selenium and ferritin/iron. I have since taken supplements (not multivits) to raise those levels and I have noticed an improvement in how I feel.
But I have been having strange symptoms of being both over- and under medicated in the past year. I realise some symptoms may be down to menopause, such as hot flushes, irritability, racing heart, dry skin, and difficulty losing weight. My blood pressure always comes back around 150/90 in the doctor´s office despite taking perindoprile arginine (10 mg daily). However, I measure it at home, and it´s around 120/80 so I put it down to white coat hypertension.
Last week, I went to see a doctor in Thierry Hertoghe´s clinic in Brussels. I had read a lot about how they correct all hormones as that is needed for overall balance. I have long suspected I have adrenal fatigue, but preferred not to self-diagnose and -treat so as not to make matters worse.
Not only does it cost a fortune to see a doctor in that clinic - the first time they schedule a double session and charge you 600€, but labs are also very expensive (ca 800€ for blood work and a 24 h urine analysis). Add to that travel and hotel costs and drugs not reimbursed by health insurance and we are talking about a lot of money...so much that I need to make sure this is really going to lead somewhere.
I had labs done in July. Blood drawn at 7.30 am, 24 h after taking 200 mcg of levo:
TSH 0.05 (0.35-4.0)
FT4 14.8 pmol/L (9-20)
FT3 5.3 (2.7-5.4)
These are results you´d expect in someone on T3 + T4, right, but not someone on levo only?!
The doctor said that my body is "over converting" T4 to T3 because I am cortisol deficient, but that I am actually hypothyroid as my T3 levels were below range in 24 h urine. She prescribed Erfa and told me the T4 to T3 conversion will improve once on NDT...I have never heard of that happening?!
Is it even possible for the body to "over convert" FT4 to FT3...would excessive T4 not be shunted towards reverse T3...???
I was also surprised to see a TSH that low on levo, but the doctor said all thyroid hormone will suppress the TSH. Not true in my experience.
Also, she told me that since I have hypertension I cannot take hydrocortisone which is their preferred drug for adrenal fatigue, but that I will have to take Medrol instead. She prescribed half a replacement dose (2 mg daily) as she said that will support my adrenal glands without shutting them down. I don´t know how it works, but I know that you cannot top up your own thyroid hormone production, but you need to replace it. Why would cortisol be any different?! I am afraid my cortisol production will decrease even further on 2 mg of Medrol, without replacing the cortisol lost...or did I get this wrong? I cannot help it, but I felt the doctor did not really know what she was talking about, and just made things up as she went along.
She told me I am iodine deficient and prescribe Lugol drops. My results (24 h urine): 152 ug/g (125-264). According to her, iodine will increase T4 to T3 conversion along with Erfa...after telling me that I was OVER converting T4 to T3 due to low cortisol...?!
To sum up, I did not have the impression I was paying for true expertise. I know these doctors are GPs who call themselves hormone specialists after attending Hertoghe´s hormone academy, but this is not what I expected...what she said about T4 to T3 conversion and adrenal fatigue simply doesn´t make sense to me.
She said that the 24 h urine analysis will give a much clearer picture and more accurate results, and that what is in the blood does not tell us anything about what is going on at cellular level. However, from now on, I will on have blood work only. Why, if that is not a reliable method...?
I am seriously considering not going back. These are the drugs she prescribed: Erfa, Medrol, Oestrogel, Utrogestan, iodine, growth hormone, DHEA, pregnenolone, melatonin and something she called "a feel good hormone". It turned out to be Syntocinon which, according to the PIL, is used to make the womb contract and increase the supply of breast milk after childbirth...
To be honest, I have a bad feeling about this. Not only would this treatment plan cost me a fortune, but I am not even convinced I need all those hormones. I know Dr. Hertoghe is considered a dangerous quack by many of his peers, but I did expect doctors in his practice to be competent. Now, it feels like I´ve wasted a lot of money.
I realise this is about much more than thyroid hormone, but would appreciate any feedback.
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Annacat69
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Your review of Dr. Hertoghe's clinic is interesting but leaves me with a very unfavourable impression. The one point I am going to make is that you have been prescribed far too many medications all at once. With doing that it is difficult to know which med will work for you and which will not.
It looks like you are being given a lot of different drugs all at once. How will you know which one is making you feel better? If this was me I would have just tried the NDT to start with and see if that makes a difference. Can you afford the ongoing cost of all this?
Let's suppose that your "only" problem is primary hypothyroidism. Being hypo can, over time, trash your nutrient levels, damage your gut, affect the output of your adrenal glands, affect your sex hormones, and probably cause some other effects. After all, every cell in the human body needs T3 to function properly, for some or all of its life cycle, so if it doesn't have enough T3 any cell can be damaged or work sub-optimally.
If you can fix the original problem (the low thyroid hormones), then, with luck, your body can gradually repair itself to some extent. To help your body to repair then optimising as many nutrients as possible will help enormously. But, treating your thyroid hormones might do all you need for your cortisol to normalise. For example, one member with very low cortisol found her level shot up to a reasonably healthy normal when she took T3 for the first time.
A few years ago I was under the impression that the Hertoghe clinics were supposed to be the best of the best. But then I read a few reports like yours of people being charged phenomenal amounts of money and getting no benefit. How can someone possibly know whether some supplement or hormone or drug helps them when they start taking 10 different supplements and prescribed drugs for the first time, and all at once. And if they don't get better is it because of the combo of things they are taking or just one particular brand of one particular drug or supplement or hormone that doesn't suit them? There is no way to tell.
Can I suggest that you go back to basics and start by posting your latest thyroid function test results, let us know what you are taking for it, what your levels of vitamins and minerals are and what doses of nutrients you are taking. I'm afraid there is no short-cut to good health with thyroid disease. It will take time to get well, and even if not all problems can be fixed you can at least feel better than you do.
And I promise we won't charge you anything for the suggestions we make - although I should point out that nobody on here can be assumed to have any medical training whatsoever.
Regarding your blood pressure, thyroid disease can seriously affect the heart and the circulation. For a start, hypothyroidism has been known to raise cholesterol for decades. In fact in the first half of the 20th century having high cholesterol was considered to be diagnostic for hypothyroidism. Sadly, many doctors don't even know the two are connected any more and put people on statins rather than fix their thyroid hormone levels. And statins are one of the biggest cons on the planet that won't save your life or lengthen it at all.
You might find this link of some interest (although I don't, as a general rule, like the site it comes from) :
I could afford these costs if I gave up other things, but I am not sure it would be worth it...I agree with you all that you should not start taking several new drugs and supplements at the same time.
I am a bit hesitant about taking Medrol...it would seem any kind of exogenous hormone decreases your own production of said hormone. I have read Dr. Peatfield´s book "Your hormone solution and how to keep it healthy", and he recommends short-term treatment with physiological doses of HC or pred; 6-8 weeks. I assume that´s to prevent the body from shutting down its own cortisol production...I would like to support that naturally if at all possible. I am not a doctor, but I am not too convinced about the argument that, as long as you take physiological doses of hormones, that won´t shut down your own hormone production...
What I am not too crazy about when it comes to the Hertoghe philosophy is that those doctors assume that the T3/T4 ratio in NDT is right for everyone. They don´t use synthetic T3, they don´t prescribe T3 only, and just assume T4 is never enough and NDT is the best option. Period. The doctor also said it´s rare to need more than 90 mg or 1.5 grains of NDT daily...in the case of Erfa, that´s about 50 mcg of T4 and 12 mcg of T3...may not be enough for someone who needed 200 mcg of levo just to feel human...!
Ok, my labs. I have used different labs so the ref ranges will vary:
2019 (before going on supplements, on 175 mcg of levo):
vit B12 333 pg/mL (189-883)
vit D 29.9 ng/mL (<30 deficiency)
zinc 720 ug/L (700-1200)
ferritine 41 ng/mL (10-205)
serum iron 14 umol/L (9-34)
TIBC 75 umol/L (47-80)
vit A 2.22 nmol/L (2.09-3.84)
magnesium 2.4 mmol/g (2.6-4.6)
folic acid 315 ug/L (250-800)
2020 (on supplements and 200 mcg of levo):
vitB12 751 ng/L (250-883)
vit D 82 ng/mL (30-100)
zinc 1.14 mg% (1.0-1.50)
ferritine 103 ug/L (60-250)
serum iron 21 umol/L (9-34)
TIBC 60 umol/L (47-80)
vit A 2.60 umol/L (2.09-3.84)
magnesium 6.1 mg/dL (4.0-6.4)
folic acid 390 ug/L (250-800)
Thyroid labs on 200 mcg of T4:
TSH 0.05 mU/L (0.35-4.0)
FT4 14.8 pmol/L (9.0-19.0)
FT3 5.3 pmol/L (2.6-5.4)
anti-TPO 8.6 U/mL (<5.6)
anti-TG 1.3 U/mL (<4.1)
Just for comparison: thyroid labs at the time of diagnosis (before treatment):
TSH 27.3 mU/L (0.4-4.5)
FT4 ng/dL 0.5 (0.8-1.8)
anti-TPO 4561 U/mL (<8)
anti-TG 445 U/mL (<6)
FT3 not tested at the time.
Current supplements:
vit D 5000 IU/day (the doctor recommended going up to 6000IU)
vit K2 (MK7) 200 ug/day (as instructed here when on vit D)
beef liver capsules (maximum dose, 6 capsules daily) along with 1000 mg of vit C
zinc bisglycinat 125 mg/day (25 mg of elementary zinc)
As instructed, I went off all supplements a week before going to the lab.
I have been on beef liver capsules to get my iron and ferritin levels up (I have always had heavy periods treated with tranexamic acid) and have been worrying about vit A toxicity, but the doctor said my vit A levels are borderline low and that I could add some vit A...
those doctors assume that the T3/T4 ratio in NDT is right for everyone. They don´t use synthetic T3, they don´t prescribe T3 only, and just assume T4 is never enough and NDT is the best option. Period. The doctor also said it´s rare to need more than 90 mg or 1.5 grains of NDT daily...in the case of Erfa, that´s about 50 mcg of T4 and 12 mcg of T3...may not be enough for someone who needed 200 mcg of levo just to feel human...!
This rings alarm bells immediately. There are people on this forum taking all sorts of levels and types of thyroid hormones, and we definitely don't all feel well on the same ratio of T4 and T3. And any doctor who can decide before she starts that you are unlikely to need more than 1.5 grains of NDT because that is what she thinks most people need would make me run away immediately. There are people on this forum who take, say, 200mcg T3 per day and feel well on it for the first time in decades. There are others who happily take 5 grains of NDT per day. And I have read posts from people who were taking 500mcg Levo per day.
There are some vitamins and minerals for which there is a known optimal. If I don't know the optimal level for a nutrient, as a personal choice I always aim for mid-range, on the basis that that is unlikely to do any damage.
vitB12 751 ng/L (250-883)
This is fine. Optimal is considered to be any of the following, depending on who you ask.
greater than 500 ng/L
Top half of range
Top of range
1000 ng/L
Vitamin B12 is not poisonous if it goes over the range.
Optimal is different for Active B12.
vit D 82 ng/mL (30-100)
Your current level is actually higher than optimal, which is 40 - 60 ng/mL. You can work out your own dose for vitamin D with this link :
Most people need to take a maintenance dose once they've reached an optimal level, to stop themselves becoming deficient again. Always pay attention to the units for vitamin D. European and American units are usually different.
Supplements may be sold in units of iU or mcg. To convert from one to the other use this link :
I don't know an optimal level for zinc, but I do know that :
Too high a level of zinc will decrease copper levels.
Too low a level of zinc increases the risk of copper toxicity.
So go for mid-range for safety which is 1.25 with your range.
ferritine 103 ug/L (60-250) 23% of the way through the range
serum iron 21 umol/L (9-34) 48% of the way through the range
TIBC 60 umol/L (47-80) 39% of the way through the range
Optimal for ferritin (iron stores) is mid-range or a bit over i.e. roughly 155 - 180 with the range you've given.
Optimal for serum iron is 55% - 70% of the way through the range.
For TIBC I would aim for mid-range. Personally, I would prefer to know saturation rather than TIBC (although knowing both would be great). I trust saturation results more than TIBC.
With your results - which aren't dreadful - I would suggest trying to eat a diet with more iron in it - see the dailyiron.net link below - rather than taking iron supplements. Taking vitamin C with any iron supplements or foods with iron in helps the body to absorb the iron.
Some people lose iron much more rapidly than normal and so they need a maintenance dose once they've got their levels where they want them. It takes a lot of trial and error and testing to find the right maintenance dose, but is worth it in the end.
vit A 2.60 umol/L (2.09-3.84) 29% of the way through the range
The basic magnesium test is a poor one. There is magnesium in body tissues as well as the blood stream. The body prioritises magnesium being in the blood stream and will "steal" it from other body tissues to put it into the blood. So you could have good levels of magnesium in blood and be deficient everywhere else - but the blood test won't tell you this.
As long as your kidneys are functional they should excrete excess magnesium in the urine. So, many of us take magnesium supplements [daily dose of about 250mg - 400mg of magnesium per day] and don't bother to test. For info on magnesium supplements that are available - you will have to choose the one that appeals to you most :
I've never seen a folic acid test before - usually it is referred to as "folate". Folate and folic acid are not the same thing, and I have often wondered in a folate test what is actually being measured - is it folic acid or is it folate? I have never found out with 100% certainty. See this link :
Many of us with thyroid disease find that we feel better with a 100% gluten-free diet. We don't need to suffer from coeliac disease to get benefits from going gluten-free.
Your results are puzzling.
It is common to see people with low Free T4 and respectable levels of Free T3 when the thyroid is failing. The thyroid and the body seem to work overtime to convert as much T4 to T3 as possible. But your body appears to be really, really good at converting T4 to T3, which is unusual. The usual issue people have is that they don't convert very well at all.
From your first post in this thread, you said :
I had labs done in July. Blood drawn at 7.30 am, 24 h after taking 200 mcg of levo:
The fact that your Free T3 is still so high 24 hours after taking 200mcg of Levo suggests to me that there may been times during the 24 hours when your Free T3 was actually over the range and that could be when you feel a bit hyper. Although it is the case that some people need a high in range or over the range Free T3 to feel well.
I don't know whether you are open to experimenting, but in your shoes I might want to try reducing my dose by a small amount - say 10mcg or 12.5mcg per day (depending on the pills you are prescribed), for 6 weeks then do another thyroid function test under the same circumstances.
Another possibility is that you might be someone who does well on T3 only, and doesn't need the T4.
For someone taking Levo only, this link written by helvella could be helpful :
And yet another possibility is that you might do well on NDT, but I would worry that your Free T3 might end up even higher in comparison to your Free T4 and might make you feel worse.
...
The other thing that would be helpful to know is whether or not you have low or high cortisol. I don't know where you live and what options you have for saliva testing of cortisol without involving doctors.
Thanks a lot for your input and helpful suggestions, HumanBean!
I definitely have Hashimoto´s; these are my labs from 19 years ago (at the time of diagnosis, before meds):
TSH 27.3 mU/L (0.4-4.5)
FT4 ng/dL 0.5 (0.8-1.8)
anti-TPO 4561 U/mL (<8)
anti-TG 445 U/mL (<6)
FT3 not tested at the time.
The fact that my antibodies are now almost in range and the anti-TG in range does not mean much as far as I know, since I was diagnosed with Hashi´s almost 20 years ago and anti-TPO and anti-TG fluctuate...?!
Given my latest results on 200 mcg of levo...yes, they are confusing as they look more like someone on T3+T4 or NDT than someone on levo only, but the fact that my FT3 was at the top of range makes me wonder if I have managed to improve my T4 to T3 conversion by improving my vitamin and mineral levels...it´s possible that low cortisol caused me to not recover fully on levo, and maybe I won´t need to switch to NDT at all, but rather should work on getting my cortisol levels up...? After all, people with bad conversion usually have very low FT3 levels on levo, but mine were at the very top of range...so why would the doctor claim I have a conversion problem...?!
My head is still spinning trying to digest all the info the doctor threw at me, but this statement stands out: that when cortisol deficient, your body will start over converting T4 to T3, and that would explain my midrange Ft4 and my high in range Ft3...I´ve never heard of that happening. The only way of getting too much fT3 is, to my knowledge, to take too much NDT/T3 or to have Grave´s...but your body cannot over convert T4 to T3, can it, because you have this defence mechanism known as rt3...?!
But I have been having strange symptoms of being both over- and under medicated in the past year.
This is just based on reading lots of people's results over the years, but I wonder if your problem is that your ratio of Free T4 to Free T3 is wrong for you? Some people do well with Free T4 of zero and Free T3 being slightly over range. Some people need both to be about 70% of the way through the range or 80% Free T4 and 50% Free T3. We're all individuals and the ratio that helps us feel our best varies a lot. And finding the right ratio can take a long time.
Not sure about any of the rest of it ,but yes , tsh of 0.05 on Levo alone is perfectly possible , mines been around that for yrs on levo with FT4 in top half of range /over range an dFT3 mid range. Many examples on this forum of similar.
The relative rise of FT3 to Ft4 on this latest test while still on 200mcg is interesting , but i'm not sure what to make of it . On the face of it you'd think it was a good thing.
Could this improved conversion be explained by supplementing vits etc since previous test ?
If so , and if FT3 is still at top of range now , might it have been worth considering a tiny reduction in dose of 12.5 mcg Levo to see if this settles the fluctuating over? medication symptoms...... this is just a hunch ....... but you'll be pleased to hear i'm not charging 100's of Euro's to share it with you.
There is one more thing I don´t understand: this doctor said that a 24 h urine analysis is the only way to accurately determine hormone levels at cellular level, and that what´s in the blood does not tell us much if anything. According to her, I was hypo because my T3 levels in urine were low although FT3 was at top of range on levo. But, from now on, she´ll only order blood tests to save me the cost of a 24 h urine analysis...if blood work does not show us what is going on at cellular level, why waste money on it at all...?! From what she said, I could be hypo at cellular level but still have good levels of thyroid hormone in blood.
OK, I am replying to my own post as this is related to my OP:
The doctor who prescribed Erfa also prescribed a thyroid ultrasound to rule out "thyroid nodules". I was diagnosed with Hashi´s in 2001 so not sure this is relevant now but...anyway, I emailed the prescription to the nearest clinic and they contacted me yesterday to ask me for my most recent thyroid labs. So I emailed them back. They then called me back and said they could not offer me an appointment until my TSH (0.05) "normalised"...??? I don´t understand anything. Has anyone experienced this?! Why would my thyroid labs matter...after all, people with Grave´s have thyroid ultrasounds with a suppressed TSH...right?!
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