I'm still in a complex situation where I'm both completely refractory to all oral meds, and have normal bloods. Trust I know the situation best and I've tried every oral solution you might suggest. I've been hypo 3 years, and I'm now very unwell. The only solution is to restore euthyroidism via parental route before I can transfer to oral, like is done in other refractory patients with abnormal TFTs (unless they find a reason for my oral intolerance/possible malabsorption from gastro inspections, which they haven't done. Trust me on this, I know my case well at this stage). I was misdiagnosed with FND / CFS because my endo doesn't get the bloods, despite many attempts at trying to put this across.
It's very possible I'll have to fall into crisis to 'prove' the diagnosis & access treatment, but I'm doing all I can to try to get help before this point. I've accepted the situation now, but it's not good.
Question - I'm in the process of drafting an email which I think puts everything into context as best I can. My labs were last taken in January - TSH 1.4, FT4 17.2, ft3 4.2 (Roche assay). Both my free hormones are actually rising over time, despite being very severely hypo. I told him about Spina Thyr and put my TFTs in, but they were unremarkable, only borderline numbers wise, no asterisks.
I think the transport system may be affected by acquired factors, as it's an energy dependent process, and can also be affected by products in the serum, I have reasons for this I can back up. I was also going to mention Dio2 being impaired by acquired factors, but in this case would Spina not come up with clear issues? Or not necessarily, and would only be shown in an FT3/RT3 ratio (which he won't accept if I were to get it taken from a lab)? If anyone knows this I'd be grateful. And if transport was affected , would hormones reach where Dio2 is located?
Sorry if I sound confused, or am not making sense. My knowledge is a lot more rudimentary than some of yours, but I've read as much literature as I can get a grip on. I get stuck at transport & receptors & detail like this as I'm so unwell and dealing with brain fog this bad (though you've all been very informative on past posts, thank you).
I've spoken to DippyDame about resistance, seen jimh111 ' s website. Before I became totally refractory, both levo and combo therapy made me more hypo. So either I need T3 only, or my cortisol is biounavailable, or both (He won't accept saliva tests). I can't change endo, I have to work with this one - I'm in Ireland, the pool is small, I've been turned away by others. This is a hospital only problem (functional docs couldn't help because of oral meds issue, & it's very advanced now) - that's why the situation is so bad.
I've tried to send him jimh111's site but I know he didn't look at it.
Anyway, the deoiodinase question is pertinent to what I'm trying to put across. I know the bottom line is a number of things can go wrong at cell level that affect hormone bioavailability ( radd has also been very helpful expanding on this) and that it's of course possible to be hypo with normal bloods. But I need to try to present a hypothesis for what I think could be happening in my case in particular.
If you have any literature you think could help that would also be good.
At this point my mobility is so poor, and I'm feeling a bit worse every day. The endo has tried to help in his own way & said he wouldn't be so arrogant to say he knows everything, but it's been extremely hard to get through to him. I haven't seen him since Jan, as I knew there wasn't much I could do but wait to become more unwell.
(Please no advice on the meds issue, I really do know my situation best, it's stressful & quite scary and I don't have any other options, it has to be handled in a hospital. And it's 100% hypo and nothing else).
I wish there were someone who could advocate for me in person to my endo but there's no one.
Thank you
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Thyroid hormone is transported around the body but there are many other transport systems in relation to thyroid physiology, such as iodine that is transported from the thyroid follicular cells to be converted by peroxidase into MIT & DIT and thyroid hormone.
Antonio Bianco says there are at least three families of transmembrane transporters that facilitate thyroid hormone into the cells. The transporters, signalling and (de)activation of thyroid hormone by the three deiodinase enzymes all influence one another, eg T3 binds to intracellular thyroid hormone receptors and initiates signaling that regulates target genes and other metabolic pathways so if DIO2 were to rapidly raise T3 in certain cells, this will influence all other metabolism/growth in an effort to maintain cell equilibrium.
D1 converts T4 to T3 in most cells except the brain and the pituitary where D2 does it. Hence the brain fog and weird head symptoms with a D2 impairment until enough T3 can be achieved. D3 converts T4 into RT3 (inactive hormone) which can elevated when thyroid meds aren’t working correctly and then compete with any T3 for space on the cells nuclear receptors. This can make it appear that any (newly changed) thyroid meds and/or dose aren’t working and why it is said to leave any change for many weeks before reassessment (or even months dependant upon the duration of the deficiency).
If you have transporters or genetic problems they can be overcome by providing the right conditions. Particular genetics as not only does the body compensate in some form but we can persuade better conversion (for instance) through offering more of what conversion needs. A healthy thyroid gland requires tyrosine, iodine and multiple nutrients and even thyroid hormone meds simply can not function well without adeqaute B Vits, zinc, selenium and iron, and mitochondrial function requires much the same and the micronutrients.
SPINA is good for recognising (DIO2 or other) conversion issues when on T4-mono therapy (T3 meds distort results). If SPINA showed unremarkable results then your T4:T3 ratio isn't that bad. Can you provide the ranges for your TFT results above?
Why don’t you try adding a micronutrients supplement (minerals) or reassess basics (especially iron). I recently added some liquid electrolytes to my sports drink which appears to have improved my exercise recovery in a big way. Also ensure you are eating enough healthy fats and protein. Mitochondria love fats and all hormones (except sex and adrenal cortex hormones) are proteins or protein derivatives. Getting enough protein in your diet is vital for hormones and hormone transporters.
This is what I’m trying to figure out though, because the ratio is fine, both hormones are raising over time but I’m severely hypothyroid. So it seems like a problem with the hormones entering the cells rather than being poorly converted?
I should mention I’m not on any medication. It’s too complicated to try and explain (I think I have tried to explain it on a past post) but all oral meds in every form including T3 all give me an intense hypersensitive response which involves intolerable swelling and neuro symptoms that last all day, it’s histamine or mast cell involved, immunologists couldn’t help. they also have no physiological effect when I’ve tried to ‘push through’ this. I have a theory involving this but I’d rather not get into meds issue and the answer isn’t trying more oral meds (sorry I need to reiterate this, i don’t mean to be rude at all, I just find folk on here can sometimes try and push something they don’t understand. It’s an extremely unusual issue I’ve tried to figure out from every possible perspective but it actually can only be helped by a hospital once they actually confirm I’m hypothyroid, which they can only do on severity of clinical symptoms. Impossibly difficult situation.)
Your thyroid hormones look low whether you are medicating or not!
If you suspect MCAS, then calming that immune response should allow you to raise thyroid hormones. Research shows a mast cell increase in hypothyroidism, and so more histamine when mast cells are activated. Mast cells store T3 so I guess adding thyroid hormone meds when MCA is already high is like adding fuel to a fire, but equally thyroid meds need to be optimal for the immune system to function correctly.
Have you had thyroid antibodies tested. TPOAb (and IgE) can bind to the surface of mast cells causing high levels of activation and degranulation. And if you have Graves antibodies (common in Hashimoto’s) the mast cells can cause the onset of opthalmopathy by increasing in the orbital tissue.
Have you got gut issues as SIBO is common with high levels of histamine and possibly low DAO enzyme activity levels (common in thyrodi disorders).
I suggest you compose another post entitled 'MCAS' to invite other MCA sufferers to comment and give their experiences regarding raising their thyroid meds.
thanks so much for taking the time and patience. I think I would have a tough time convincing my endo that my hormones are low although of course I remember seeing lots on individual set points - but is there concrete research I could show him that we need to be at a certain percentile of the range?
Yes, I know about the MCAS/thyroid connection. The trouble is I’m actually having these intense responses to all anti histamines or anything they’ve offered to control the reactions. What I actually think is happening is that my metabolic dysfunction (both hypo and also high unbound copper levels, oxidative stress etc) is contributing to these issues and they won’t go away until I’m euthyroid. But I can’t respond to oral thyroid meds, I’ve tried many times even with T3 only . I’m going to ask them to do gastro inspections as I had SIBO in the past.
I’d not heard that about Hashi’s or Graves but my antibodies have always been normal.
I agree with your endo that you don’t need thyroid hormone meds atm because if you can control the high allergy response, thyroid hormones might increase and will certainly work better. Remember any form of unwanted inflammation is destructive in the good workings of thyroid hormone by negatively changing deiodinase behaviours. You said above thyroid hormone levels were increasing slowly, and taking meds chances shutting down some pituitary signalling that you might never regain.
MCAS and high histamine levels place the body in such a state of high alert it can start responding negatively to anything and everything, driving histamine levels even higher. My endo told me he is seeing an influx of mast cell issues post COVID (vaccine) and it's like the new ME to conventional medics scratching their heads and not knowing what to do. Therefore, conventional medicine might not be able to help you.
Antihistamines work by acting as antagonists at the H1 receptor, and for various reasons don’t agree with everyone. Conventional medicine works to control symptoms by suppressing the immune system, where as functional medicine works to modulate the immune system enough so it can deal with the symptoms itself.
If this were me I would be looking to reduce high histamine levels by supplementing quercetin known to reduce the effects of allergy. My practitioner advised using Vit C, quercetin, bromine and nettle provides the perfect antidote for many. My family successfully take these supplements for their hay fever. I’m taking quercetin for high histamine at the moment due to mould intoxication and take 2-3g Vit C daily anyway.
Other natural anti-inflammatories that work with the body (not necessarily directly with histamine but still calming an over active immune response) are Vit D, fish oils, curcumin, green tea, etc. Other suggestions would be to take a DEO supplement to offset low levels of diamine oxidase and aid histamine degradation (Seeking Health do a comprehensive range).
Ben Lynch (of Seeking Health) also has written 'The Histamine Workbook'. I haven't read this but do have his other book 'Dirty Genes' which is excellent in offering help to understand/identify own weaknesses/predispositions and strategies to help manage them.
Also to adjust your diet. Just as some foods contain higher amounts of histamine, other encourage better DAO enzymic function so reducing some foods whilst increasing others offers a double positive (just Google 'low histamine diet' for further info.
thank you for your input and I appreciate you’re trying to help, but you don’t understand my situation, as I’ve tried literally all of this (I get these reactions not just from pharmaceuticals but any and all natural meds and supplements too) and I am now very disabled by hypothyroidism and will not get better without thyroid meds as my peripheral cells/tissues are starved of thyroid hormone. This isn’t the kind of issue I can help with functional medicine - I went through all of that with practitioners, reading and research with FM for about 2 years. I’m not ignorant to it, I only say they can’t help me because I’ve tried it all. I’ve been on a diet of the same 10 foods on rotation (eat a curry occasionally to not go insane) for 2 years due to histamine reactions.
I do understand what you’re saying about inflammation etc but my body is now in a state of complete disarray and it needs thyroid hormones as a step 1 to function. I have an intelligent theory re the MCAS reactions myself.
I don’t understand why my levels are raising over time the sicker and more severely hypo I get and that’s why I wanted to ask the forum. It certainly isn’t because I’m not in need of thyroid hormones/I’m not hypothyroid. I can barely walk down the road from the severe muscle weakness - and it isn’t a deconditioning that can be built up with exercise.
I’ve done everything in my power to get well, yet it’s all been fruitless without working thyroid hormones. Hence why I’m in this situation where I’m totally stuck and getting sicker. I wish I could be empowered by your advice, but unfortunately it’s nothing I haven’t tried.
I appreciate you trying to be helpful and informative.
Cellular hypothyroidism isn’t that unusual on the forum. The tricky part is establishing what is driving your inability to process thyroid hormone normally, and high levels of mast cell activation.
Presumably conditions such as Lyme Disease, H.Pylori, blastocystis hominis parasites, mould intoxication, Candida fungal growth have all been eliminated? Any of these conditions (and others similar) can change deiodinase enzyme behaviours enough to allow adequate thyroid hormone labs but hypothyroid symptoms on a cellular level because as you say thyroid hormone isn’t allowed to work normally on a cellular level.
Unless the source is removed you will continue to become further and further hypothyroid (even with good labs). Two years of FM isn’t long. Some of us need a life time because of conventional medicines little understanding of thyroid hormone influences.
Diet restriction can have profound effects on thyroid hormone and lead to nutritional deficiencies, and if you suspect SIBO, then gut dysbiosis follows.
Are you aware that even if you were in Hypothyroid 'Coma' , IV T3 would not automatically be administered .. oral T3 is usually used (via naso gastric tube ) .. and then only for a very short time (a few days) after that Oral T4 is usually used . eg see this guide for Norwich & Norwich University Hospitals NHS Foundation Trust (can't give direct link it's a downloadable PDF)
"Trust Guideline for the Management of Suspected Thyroid Emergencies
Approved by: Chair of CGAP Date approved: 30/08/2022 Review date: 30/08/2025
A Clinical Guideline For Use in:
Endocrinology out patients, clinical investigation unit, acute medical unit, accident and emergency and all other clinical areas of the trust
By: Medical staff
For: Suspected thyroid emergencies in non- pregnant adults
Division responsible for document: Medical Division (Including Emergency)
Hiya. I’m aware it’s only used in severe emergencies (I’m in Ireland and this is what my endo said) and this is why my problem is so difficult, because oral meds 100% do not work and no one has figured out why. But IV levothyroxine would make me unwell. I’m going to push them to try and do gastro inspections to see if we can get to the bottom of what’s triggering my bizarre swelling reactions & possible malabsorption. That’s all I can do. If they treated me with oral T3 in an emergency it wouldn’t work.
towards the end of this interview Dr Eric asks about folks presenting similarly to what you describe, don’t know if there is anything here you don’t already know. Maybe? healthunlocked.com/thyroidu...
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