Guys. I have hypothyroidism on a cellular level - meaning it is not primary, not secondary, but underactive/unresponsive within the cells. TSH normal, low- end of range t4 and t3. Both levothyroxine and Armour have increased my symptoms and made me very ill as they are not making it into the cells. Endocrinologists don't even understand or believe I'm hypo due to 'normal' ranges. I am 100% suffering from this condition and have been for 1.5 years now, it has destroyed my life, but I cannot be treated with medication. I am have been working with functional medicine for such a long time and uncovered gut dysbiosis, leaky gut, heavy metal toxicity amongst others. My only option now is tofigure out the root cause and heal this from the inside out - no one is going to agree to give me like, IV hormone replacement unless I'm literally in a coma. I'm thinking how the hell do I make my cells respond ... like co-factors - iron, vitamin A, iodine, amino acids... all the things that the cell needs. My B12 and Vit D are actually very high.
I'm not even looking for answers here... but has anyone else struggled with this that I could please speak to for support? I feel like I am going insane. I've lost my job. My brain is broken. The quality of my life is poor - I also developed mast cell activation syndrome in October and eat a diet of about 8 foods. Multiple chemical sensitivity has made medication to stabilise this almost impossible - that's a whole other story and I'm working on that as well.
Trying everything and speaking to so many alternative practitioners who might understand. I'm just trying to have faith but it's honestly very hard now.
xx
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perardua
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This was only half the standard starter dose levothyroxine of 50mcg
Obviously such a minuscule dose of levothyroxine did nothing
Was dose increased to 50mcg
Bloods should be retested 6-8 weeks after EACH dose increase
Typically eventual dose of levothyroxine will be around 1.6mcg per kilo of your weight
How much do you weigh in kilo
Unless extremely petite likely to need at least 100mcg levothyroxine per day
You can’t know if levothyroxine suits you until on approx the correct dose
EXTREMELY Common to feel a lot worse on just 25mcg levothyroxine…..too little to have any effect other than to lower TSH and cut your own thyroid output
When were vitamin D, folate, ferritin and B12 last tested
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
I have hypothyroidism on a cellular level - meaning it is not primary, not secondary, but underactive/unresponsive within the cells.
I'm curious how you know this?
You could have a condition called Resistance to Thyroid Hormone (RTH). There are a few people on the forum who have this and treat themselves with very high doses of T3.
I have multiple allergy and multiple chemical sensitivities and no thyroid. It can be very difficult working out which meds to take for a start avoid capsules since they often use sugar as fillers. But check fillers- I’m sure you already do, same as colourings.
I take T3 Liothyronine- no Levo, makes me ill.
There is a department at UCLH ( University College Hospital London) near Euston Square which had a department that specifically looks at problems with meds- Drug Allergy Dept. Run by Dr Lukawska.
It takes tertiary referrals.
They maybe able to help you find a Med you can take.
I self medicate with high dose T3-only, not an easy route to go down and definitely the last resort!
For good health the active thyroid hormone, T3, needs to reach the nuclei of the cells (where it becomes active) from the serum via T3 receptors. To achieve this the T3 receptors need to "work" efficiently.
It's not the cells that are faulty as you seem to believe but the T3 receptors. Complicated.
Very basically, the faulty T3 receptors create a resistance which prevents T3 reaching the nuclei of the cells....the result, health declines over time.
The T3 that does not reach the cells sloshes around in the serum until it is eliminated by bowel and bladder.
Last resort T3-only treatment is required in the form of a large dose of T3 which acts as a "battering ram" against the inactive T3 receptors forcing some of the T3 dose to reach the cells. The amount of T3 required is the amount that overcomes the resistance and will vary for each patient. Depending on the amount of T3 required FT3 can become well over range while FT4 and TSH are suppressed. Initially I needed 212mcg. I now manage on 100mcg, still a hefty dose!
I believe I have had RTH all my life and very likely inherited from my maternal linline
Over 20 years ago and after years of poor health I requested a thyroid test and was diagnosed as hypo and eventually took 200mcg levo but my health continued to decline until I could barely function.
It's clearly much more complicated than this but you get the jist!!
Medics failed to help, I found TUK, read much and eventually uncovered the reason for my failing health. Member's advice and support has been life changing.
My thyroid journey is detailed in my profile. I need a huge dose of T3 that would make non RTH patients very ill....or dead!!
You may find this ebook helpful it is available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton
I also followed the work of the late Dr John Lowe a T3 expert, he had RTH.
Having said all that the following article may very well lead you down another route to discovery as suggested by others with wider experience than mine.
I'm not a medic and can only refer to my own experience, also, I don't have enough info about you so cannot advise I'm afraid, you really have to read much and develop your own individual journey... with or without the help of medics.
Sorry this a rather patchy explanation, it's the end of the day and fatigue rules!!
Hi, perardua ! I am in the exact same boat as you and I’ve come to find that there aren’t many of us, so it is a pleasure to meet you, although under bad circumstances. I have been sick the last 3 1/2 years after being healthy and doing very well on thyroid treatment for about 8 years prior. I live in the US and have traveled the country far and wide seeing the best doctors at the best hospitals to find help for this awful problem. Doctors just don’t know. It seems to mimic adrenal issues but I have had them tested inside and out and they come back clear. I’ve also been imaged head to toe and all of those tests are normal. I’ve even tried low dose hydrocortisone thinking for sure it was adrenal issues, but hydrocortisone and all of the steroids make me super sick too. Back in March I was diagnosed with dysautonomia and just last month diagnosed with mast cell activation and multiple chemical hypersensitivity syndrome. I am barely able to tolerate any medication and definitely can no longer tolerate my thyroid medications. It has made life entirely miserable and each day has become a challenge. I have to avoid synthetic thyroid hormone entirely. I have had a little luck taking NDT, but once it builds up in my system, I have to stop because the reactions get so severe. I’ve tried them all - synthetics, compounded, NDT, you name it. I can no longer tolerate vitamins and minerals either due to the multiple chemical sensitivity. I look very sick when taking any medication, but especially thyroid medicine, and the symptoms it causes are a mile long. Just wanted you to know that you aren’t alone because I know there are many days where I feel alone and I grieve my old self and my own life. Please feel free to private message me and maybe we can have our own support group.
Mustang1981 as I was reading your post I literally thought someone had written my story. I have been very unwell three and a half years after doing fine on thyroid medicine for about 10 years. I too have traveled all over the US trying to get help and answers but everything came back normal. I've seen every specialist there is! Unfortunately along the way a couple doctors made matters much worse with the wrong thyroid treatment. When things initially went bad in Nov 2017 I had switched thyroid medicine to Armour and I had gone gluten-free and I am certain it was one or both of those things that kicked off my becoming so unwell. I then had a doctor over medicate me terribly by adding a massive dose of T3 and not monitor blood work - that went on eight months. I then had a doctor take me down off all medicine because I continued to barely stay in range. That lasted two years and I thought I was going to die everyday. I knew I needed thyroid medicine so on my own I started a small dose of T4 but I was shocked to find out I couldn't take it anymore the same symptoms would become so severe and even worse so again I felt like I was going to die. It made me feel almost normal for about a week and then I can't even describe how badly I would feel. So that was my proof that I needed thyroid medicine the fact that it made me feel good until it started processing so to speak. I also had mysteriously developed a resistance to folic acid, B12 and really any methyl donors. If I try to take any kind of methyl donor those same symptoms would go off the chart and I literally felt so bad I couldn't even engage . I could not believe the state I was in I went from being Ultra healthy and strong 2 barely being able to get through the day with such a long list of symptoms. I cannot believe how hard I've had to push myself just to get through the day. I have a desk job so I haven't had to quit work but it has been a nightmare. Early this year I had a new doctor give me a breath test and found out I had sibo and confirmed leaky gut as well as stool tests that showed dysbiosis and once we determine that I realized there was a lot of stuff going on in my body that was most likely caused from jerking back and forth between overmedicated and then under medication on thyroid for two years. I then learned sibo is connected to histamine so I started eating no histamine foods and within 3 days the extreme head pressure I had had for 3 years was gone! Like a miracle! Then it hit me as I looked over my daily log that my very worst days where I thought I was going to die were linked to the foods and drinks I had had the day before -- it took over night to affect me. But this was the point I finally realized it was the gut bacteria problem and leaky gut as well as low functioning thyroid making me feel horrible. At that point I knew my problems were all related to low functioning thyroid and these gut issues that had developed. In the meantime at the beginning of this year I found a really good functional Osteopath who has in the last few months started working on my gut and got me on a low dose of T3 which I tolerate and I am very much much better but not normal I still have symptoms they're just much better where I can live with them. Also in the last couple months I decided to have my genetics done and I'm working with an Australian geneticist who is very very good. I just consulted with him and he explained I have a genetic situation where I cannot produce the enzyme that is needed to feed the good bacteria in my gut and that this dysbiosis is the root of my problem so I have to start a supplement that will provide this food for the good bacteria and it also helps get rid of the bad bacteria. What I thought for these last three years were hypo symptoms some of them are actually gut related and I proved that by eating kefir for 3 days in a row to find out certain symptoms went off the charts. The kefir was feeding the bad bacteria and on that third day the acne, fatigue and body aches that I normally would think was from thyroid was so bad I couldn't believe it! In addition I learned from the genetic testing that I am very much an under methylator and I simply cannot detox which is proven by hair analysis so we are working on that as well since it all really works together to make your cells happy. I now believe three and a half years ago somehow switching thyroid medicine and or going gluten-free somehow affected my gut bacteria and I lost good bacteria and the bad bacteria took over. With my genetics I'm not able to feed or grow the good bacteria and that has been a huge part of my problem. 20% of our T4 is converted to T3 in our gut so there you go! Doing genetics has helped me see it's a bigger picture than just a low-functioning thyroid . If you haven't taken a look at your genetics yet that might be helpful to put some more puzzle pieces together. When I look back and think about how sick I've been for over three years I really feel like I need counseling. No one and I mean no one should have to go this long and feel so many days like you're going to die without having answers and having to work and scrape so hard to get what few answers you do get. I was beside myself when I figured out I could no longer take Synthroid anymore -- it was literally making me crazy all these horrible symptoms and I can't take thyroid medicine that I know my body needed to feel better and I can't take certain supplements what in the hell has happened to my body? I think you and ThyroidFun and I have much in common and it would be nice if we could exchange emails and communicate if either of you are interested private message me and I'll send my email. Best of luck to both of you hang in there and just keep looking for answers!
Wow, it is amazing to read your story as well. I just know there are others like us out there, but sadly I am always made to feel like I am the only one when speaking to specialist after specialist. I’ve been called crazy and that it’s impossible to have a reaction to thyroid meds. My problem started two months to the day after my mom tragically passed away. I was under an incredible amount of stress, but no change in diet, medication, etc. I, too, have been led astray my many doctors which I think caused me even more damage. The constant up and down of the thyroid hormones has caused many other problems like you said. There have been more days than I can count that I was certain I was dying. It’s a terrible feeling, isn’t it? I used to go to the ER when I felt like that but there just isn’t anything they can do, so I’ve stopped going and I ride out those very bad days at home. I can go to bed at night feeling relatively normal at times and then wake up feeling like death. I don’t know what happens but like you said, I think it might have something to do with food or drink the day before. I haven’t been able to pinpoint foods yet because there are literally some days I struggle to get in any food. My appetite is nonexistent at times and then there is the nausea. Histamine is a bad mast cell trigger so I think it’s definitely involved somehow. I was doing very well when taking anti-histamine or steroid trials, so much so that it was like a miracle, but after about 10 days those meds start making me sick too. Then if I ever reintroduce them, it’s like my body remembers and treats them like poison. So I’ve stopped literally every med except the necessary thyroid med. I struggle to get crumbs of that in even. Most recently I went back to NDT and decided to drip feed little bits in throughout the day, but now that has caught up to me and I feel terribly overmedicated, which my labs beg to differ. It’s a terrible predicament and I still feel like somehow adrenals are to blame but I can’t prove it. I did try the naturopath route early on and he diagnosed leaky gut but really couldn’t help me beyond that. He wanted to pump me full of vitamins, minerals, probiotics, and other supplements but the more I took, the sicker I got. I finally reached the $10,000 amount with him and had to pull the plug. I pay good money for health insurance and just couldn’t throw anymore away. I recently got a referral to see a geneticist so I have to schedule that. I often feel like I am missing an enzyme or one got mutated or something. I have had some basic genetic testing done with the naturopath and he found that I don’t methylate/detox either. So many similarities between us. I’d love to communicate privately and keep in touch. I’ll private message you my email. If you wouldn’t mind, I’d love to compare symptoms too. Thanks for reaching out!
I relate to you so much, I originally was given 25ml of levo, and was kept on that low amount. Over time I became very ill, got diagnosed with Fibromyalgia. First diagnosed with hypo and fibro aroung 2011. In 2015 I started self medicating at first with NDT, then added Tiromel. I was on 2 x ndt and 50 of tiromel. I started to feel a little better, but then doctor asked me to reduce my dose as my tsh was supressed. My t3 was just a little over range. After reducing I became ill once again. Last October I decided to stop all thyroid meds as thought maybe it was that making me ill, and perhaps my thyroid would kick in by itself. I was monitoring my vitals and started to feel better, but then all of a sudden in december I couldn't sleep and actually went a lot crazy. I got sectioned and ended up in the hospital for over 4 weeks! Think I suffered from myexedema madness! I got told by doctors that I was not complying with them and they would refuse to treat me unless I only took levo. I am now once again really ill, have lots of joint and muscle pain. I have been referred to an endo and am waiting for results of alot of blood tests. I beleive I have Thyroid hormone resistance and if I do not get any help, which is very likely as endo doesn't seem to agree with t3, then I think it will leave me with no other choice than to self medicate with t3 only. I have been diagnose with Bipolar disorder, so am worried that my mental health my suffer again. I am now taking 75 of levo and my t4 is only 14.5 and tsh 2.48. I think I am being left on that amount. Just to add when I went crazy my t4 level was down at 7.50
I got told by doctors that I was not complying with them and they would refuse to treat me unless I only took levo.
If you don't feel well on the dosage of Levo that you are currently taking then you could choose to buy your own Levo / T3 / NDT and decide for yourself what your correct dosage is. You could get help with interpretation of results from this forum. DIY isn't an easy option - and it can be expensive, but for many of us we have no choice.
I treat myself with thyroid hormones, and I do my own testing with finger-prick tests. I don't get prescribed any thyroid hormones at all, never mention my thyroid to a doctor, and refuse to have my thyroid tested.
Last October I decided to stop all thyroid meds as thought maybe it was that making me ill, and perhaps my thyroid would kick in by itself.
You ended up being sectioned because you stopped taking all your thyroid meds. Please don't do this again. A thyroid under attack from autoimmune disease gets either shrivelled up or becomes fibrous and scarred and is incapable of creating thyroid hormones. It simply can't "kick in" again.
Before the first thyroid treatment was developed at the end of the 19th century the usual fate of people with an underactive thyroid was to die in lunatic asylums. I read somewhere that it took on average about 12 years of absolute hell to do so.
Doctors treat having an underactive thyroid as a minor illness. I think it is common for patients to pick up on this idea and decide that this or that supplement or a different diet will make them all better and they don't need those awful thyroid hormones.
As you discovered the hard way, thyroid hormones are essential for life. Every single cell in the human body needs T3. It isn't an optional extra.
You might find this article "Myxoedematous Madness" of interest. It was published roughly a year after the NHS was created, and the people described in the paper had probably never had thyroid treatment at all before they were admitted to hospital.
Guys I have no idea how i missed all these responses at the time. There was probably a lot going on. I'm in an even worse way now. I just want to say so much love and solidarity to you all x
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