I have been told I do not have autoimmune encephalitis, after the spinal fluid tap results came back normal, but cryptogen epilepsy (= unknown causes as they cannot find any brain damage).
I was told by the neurologist now responsible for my treatment that a connection between my suppressed TSH (<0.01) and epilepsy cannot be excluded, and therefore it's important that I go back on thyroxine asap to normalise my TSH.
She is not going to let this go, that much is clear.
She also said that she finds it very strange that a GP is responsible for managing my thyroid condition, and that I should see an endocrinologist...
I know, it's my decision and my body and I have a right to refuse and all that, but this is getting on my nerves...I was hoping I'd be diagnosed with autoimmune encephalitis as it's a treatable condition and then I would not have to see the neurologist again, but I will need a specialist for the foreseeable future...I have been put on Lamotrigine which will have to be raised very slowly as there is a very rare, but potentially fatal side effect called Stevens-Johnson syndrom. It's going to take between three to four months just to reach the lowest maintenance dose.
So...if, to make life easier for myself and get the specialist off my back, I decided to go off NDT temporarily to normalise my TSH, what would be the best way to do it? Not take any thyroid medication at all for a week or so? Given the long half-life of T4, that would be acceptable, although I'd probably feel a bit more sluggish once the effects of T3 wore off.
But I have a feeling that, after having had a suppressed TSH for 15 years, it's not going to be that easy...would it speed things up if I first went off all thyroid meds, and then added T4 only after about a week? Or would it be better to go straight from NDT to T4 only? I assume it would take a little longer for the TSH to normalise, but I would be willing to do it just to get specialist off my back. She keeps telling me I need to avoid stress while we find the right treatment for my epilepsy, while adding to it by making a fuss about my TSH. She has never tested my FT3 levels. My FT4 levels are midrange but seem of no interest to her.
If anyone has ever normalised a suppressed TSH, for whatever reason, I'd love to hear about it.
Before switching to NDT, in 2011, I was seeing an open-minded GP who wanted a TSH between 0.05 and 0 in patients with Hashimoto's. The last time I had an in range TSH I was on 150 mcg of Euthyrox.
I am really sorry you have the above conditions and you've probably read these previously but, just in case:-
Excerpt:-
I know some clinicians who courageously violate the specialty's dictates. By doing so, they get many hypothyroid patients well. But those few clinicians practice medicine in constant danger of local endocrinologists filing complaints against them with medical regulatory boards. The complaints most often cite the clinicians for suppressing patients' TSH levels. Only if a hypothyroid patient has had thyroid cancer does the endocrinology specialty approve suppressing his or her TSH, allowing the benefits that come from it, such as a longer life, improved health, and an improved sense of well-being.
But if a patient hasn't had cancer and suppresses his or her TSH with thyroid hormone, the increased life span, better health, and improved well-being, according to the specialty, must be "placebo effects." And the specialty warns that the price the patient is likely to pay for enjoying those "placebo effects" is osteoporosis, adrenal crisis, or sudden death from a heart attack.
Thanks! Yes, it's a real mess...but maybe I should just ignore the specialist and stick to what works for me...after all, they cannot force me to switch to T4 only or normalise my TSH. They can warn me about the (perceived) risks, that's all...
If you were confident in their judgement that would be fine, sometimes I think our instinct is best. If it doesn't go as you wish you can then re-assess.
I wonder if they'd let you try T3 instead of T4 for a while to see if that improves everything overall? T3 goes directly into the T3 receptor cells and I found that levo was giving me severe palpitations that the Cardiologist couldn't figure out why I was having them. I haven't needed to go to A&E or see cardiologist as my heart, for about 3 years, is now calm.
I did try T3 only briefly (self-medicating) after reading about its virtues on the STTM...that was back in the good old days when T3 could be ordered without problems from Greece. Did not work for me...after 3-4 days I crashed, and I then realised I need to be on T3 + T4...the ratio in NDT seems about right for me, and I say that after doing a lot of experimenting...
I do, however, suffer from palpitations which have prompted doctors to prescribe beta-blockers (Atenolol)...I was on 50 mg for years, but it was recently upped to 100 mg daily...however, given how poorly I felt on T3 only a few years back, I'd hesitate to go back on it...also, nowadays, there seems to be no reliable online source of T3 drugs, and I cannot legally import it from the US where I live as all shipments go through customs and everything from outside the EU will be subject to inspections and possible seizure...
However, I really appreciate your feedback and input, and I'd love to hear from anyone having tried T3 only successfully...or anyone having tried anything successfully, truthfully...! To sum it up: all feedback and advice would be most welcome!!!
That's good that NDT works for you. It's quite amazing we are all so varied in our thyroid hormone replacements that I think that the Endocrinology Depts should take this into account when we aren't progressing on whatever they've prescribed and allow us to experiment a bit.
Agreed...unfortunately, most doctors are terrified of a TSH below 2...and mine is <0.01...most doctors don't ask how you're doing, they just care about your TSH...sad but true. So it's a constant battle...no wonder you sometimes feel overwhelmed and too tired to fight, right...?!
PS. The Hertoghe doctors in Belgium don't work with T3 only...they switch you straight from T4 only to NDT. For me, it worked OK, although it's taken quite some tweaking...but I've "met" other patients in online forums who could never feel well on any dose of NDT, and needed straight T3 to recover...they now have to source it from Turkey or the US, as the European sources of T3 seem to be drying up...a shame.
I don't know why I never felt well on T3 only, but the effects were pretty immediate and very clear to me: this is not for me. That's when I decided I needed some T4, too, but the exact ratio needed would need to be worked out...it feels like an ongoing battle, to be honest, although I feel that the T3:T4 ratio in NDT works pretty well for me. It's often said that pigs produce more T3 than humans, meaning the T3:T4 ratio in NDT is skewed...possibly, but if one is a poor converter (as I seem to be), maybe the 80:20 ratio works better for me than the claimed 90:10/95:5/98:2/99:1 ratio in the human thyroid (depending on source...)...?
I have no idea why I seem to need some T4 as well, but some sources claim T4 has some minimal activity on its own, and is not only a storage hormone meant to be converted to T3...?
Thanks again, Shaws, for great input and advice, I cannot say how much I appreciate it...!
My TSH has been suppressed for 10 years. No osteoporosis or osteopenia. No heart problems, lungs of a person 20 years younger. However felt terribly ill when poor quality Levothyroxine caused progressive hypothyroid symptoms, over 5 years of ill health as a result. Monitor vitamin levels if you make changes.
I am on T4 only, but one that suits me and I don't switch between formulations. I take a dose that suppresses TSH. I expect that even if you were on T4 the specialist would not be happy with a suppressed Tsh would he?
If I had my T3 removed - life would be a living hell. Whereas at present I have a nice quality. That's not to say everyone is identical but we should be allowed to try variations of thyroid hormones to find what suits.
My Endo added T3/T4. Then I knew I had to search as I was phoned at home and told to stop taking it. I refused and they told me to reduce T4 which I did. I knew then I couldn't be messed about.
I had palps always on T4 but less on T4/T3. My GP did prescribe T3 after I wrote notes to him, more or less daily, saying ' it is now 3 a.m. palps are 140 bpm'.
I complained about Mercury Pharma's T3 as did quite a few members as there had been some change in them then they ran out of it altogether. So panic amongst members. So I sourced my own and have done so. Last week when I went to surgery I was told they will only prescribe levo and I said that's fine I have my own T3. So we had a nice conversation as I think they must have disappointed other patients. I also gave him the BTA 2016 guidelines.
I take 50mcg when I get up with one glass of water and wait an hour before eating.
If you haven't read the following three chapters from Dr L, they're in this link.
Thanks...so you don't multi dose T3 then...that's what I'd find most troublesome...it seems some take it between four to eight times daily...that alone would be enough to drive me crazy...!
Thanks again, it's really valuable to hear about other people's experiences...that's exactly what I hope for when posting here so thanks again!
Dr Lowe's patients always took one daily dose. He also took one daily dose and because he was thyroid hormone resistant his dose was 150mcg of T3 and he took his in the middle of the night. The majority of his patients, I understand were prescribed NDT.
Nanaedake can you elaborate on the problem Levothyroxine that caused you progressive hypothyroid symptoms. Perhaps ypu could send me a private message so as not to hijack Hidden 's post. Anna hope you work something out that suits you.
Well, it's a constant battle...as 99.9% of doctors seem to adhere to the idea the the TSH is all that matters, and everything else - especially the FT3 levels - are unimportant...most doctors I've been to don't even measure the FT3 levels. I sometimes wonder if they even know what FT3 is...
I don't know about other countries but, in Belgium, most if not all Hertoghe doctors are on either NDT or a synthetic T3 and T4 combo themselves...meaning they understand what it means to have a suppressed TSH, and that it's important to look at other things. Most doctors - endos included - don't have thyroid disease themselves, so they have no idea how lousy you can feel on T4 only and a so called normal TSH...that is my main objection to thyroid hormone replacement and treatment. Most doctors have no idea what we are going through or how it feels to be told there is nothing wrong with us (because our labs are in range) when we still have lots of symptoms of hypothyroidism...sometimes, I wonder if patients suffering from any other disease (diabetes/arthritis/cancer...etc) have to fight so hard to convince doctors they are not doing well, and that the treatment they are receiving is not working properly...somehow, I doubt it, although I cannot prove it.
It really does sound as though we are the only group of patients that are so badly treated by the medical profession. Some doctors are caring, but most, it seems, are only thinking of their own jobs. I self-fund T3 and T4 (although use my NHS prescription for online Pharmacy for T4). I do get private bloods done by Blue Horizon though. I do wish you well.
I don't believe that suppressed TSH is causing epilepsy. If that was the reason wouldn't many of us who have suppressed TSH have epilepsy? She is not a thyroid specialist so why is she banging on about TSH? You don't have to switch to Levothyroxine because she wants TSH in range. It is the dose you take which suppresses TSH not the type of medication.
I do not think a week off meds will be long enough for TSH to rise. It will probably be more like 3-4 weeks.
I think she is trying to explain why I ended up with epilepsy although they cannot find any brain damage...it’s so easy to question the TSH as doctors have been told a suppressed TSH is dangerous...however, mine was suppressed for over ten years before these unexplainable symptoms appeared, so I also fail to see the connection between epilepsy and the TSH...
You've been breathing all your life, perhaps breathing oxygen causes epilepsy?
Sorry to be flippant, you are obviously worried, but she's not an endocrinologist or hormone specialist so why is she latching onto TSH? Why not ask her for evidence that suppressed TSH causes epilepsy in the absence of visible brain damage?
Good idea In any case, I will ask her to stop interfering with my thyroid hormone treatment, or refer me to someone else.
I had my TT in Oct 2015. After being on Levo for only 7/8 months I became so ill and decided to self medicate. After trial and error I now take 1 + NDT and 1 x T3 25mcg everyday and feel well.
My TSH is suppressed my vitamins and mineral are fine and so is my heart rate and blood pressure. I exercise every day and I am 71 years old.
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Wow...impressive
The problem is this neurologist (who is treating me for what they finally decided was epilepsy of unknown origin as they cannot find any brain damage caused by hemorrhage, infection or trauma) is insisting on sending me to the lab after being on 100 mcg of T4 only for a few weeks...I am beginning to fear the only way out of this mess is to find another doctor...if I do, I won't say anything about my thyroid condition. It's when I do that doctors immediately want to test my TSH...the neurologist also insists on a thyroid scan. I fail to see the usefulness of it...she said I have not had one since I was diagnosed with Hashi's 17 years ago...so what...?! Hashi's is a chronic illness requiring life-long treatment, so I fail to see what a thyroid scan could tell her that would in any way affect my treatment...sigh. I mean, would it really make a difference if my thyroid gland turned out to be wholly or partially atrophied...?
Bunnyjean, do you self-medicate? Does your doctor have a problem with your TSH?
I can only hope I have your stamina and good health when I am 71...!
Many hugs to you!
Anna
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After I had my thyroid removed I was sent home with a copy letter from my surgeon. My surgeon by the way is a professor, an expert when it comes to the Thyroid He is one of the leading surgeons in France.
The letter quite clearly states that the GP should always leave my TSH suppressed.
I do self medicate because in France the GP and Endos only treat with a blood test of the TSH. This being suppressed never caused them a problem only the Levo that I was on for 7/8 months which made me ill. There is no NDT in France only T3, so I now self medicate and buy in my NDT.
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Glad to hear it seems to be working for you! I think that thyroid cancer survivors are supposed to have a suppressed TSH (generally recognised by all doctors, even endos...), but nobody else with thyroid disease...?
Anyway, although it may seem tempting sometimes, I wonder if going back on T4 only even temporarily to normalise the TSH would solve any problems...what if doctor wanted to retest me regularly...I would then have to go on and off it incessantly. Doing it once a year would maybe be doable, but not every other month or so...
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I totally agree it would be a real pain. I self medicate and do not visit the GP or Endos and haven't done so for over a year now.
When I return back to the UK I have my bloods done by blue horizon and then put them on this site for comments.
The cost for my medication is approx £7.20 per month so that it is only the blood tests to pay for.
I have not had my vitamin levels checked since August 2017, but I do take a multi vitamin every day. My iron and ferritin levels had improved last summer, which I attribute to fewer and sparser periods (I'm 49 and having a period about every other month).
I take a product called MultiVitality Daily Essentials Complete. Every day, I take 1 multivitamin tablet, one Omega 3 capsule and 1 pro live culture capsule.
90% gluten free is no good it has to be absolutely strictly 100%, as explained in these links. Even watching for cross contamination on cutting board, butter, jam etc. Use a separate toaster too
Also multivitamins are generally considered a bad idea with thyroid disease. Most contain iodine which is considered very controversial with Hashimoto's and generally best avoided
Low B12, folate and very low vitamin D are very common
Just testing vitamin D via vitamindtest.org.uk £28 postal kit
Recommended to test twice yearly and aim to keep level around 100nmol
Vitamin D is actually a pre-steroid hormone
I have been trying to find out if the TSH has another role besides making the thyroid gland produce T4 and, to a lesser extent, T3, but I have not been able to find anything supporting that theory. Meaning that the TSH would essentially be unimportant once you are getting both hormones directly from medication...is this a correct understanding of the role of the TSH?
Also, given my own experience (that the TSH has never been "normal" when I felt good on thyroid hormone replacement), I have come to think that the TSH is only useful when it comes to diagnosing hypo- or hyperthyroidism, but is pretty much useless once you're on thyroid hormone replacement...?
I know this is wishful thinking, but if I were to go off NDT completely for a week, is there any way that would make a completely suppressed (<0.01) TSH rise above the lower normal limit which is 0.4...? I imagine FT4 levels would not change much, or marginally, in that time, but FT3 levels would drop significantly...and T3 is said to be what suppresses TSH more than T4. But I imagine a week would not be enough time, would it...?
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In any case, I will ask her to stop interfering with my thyroid hormone treatment, or refer me to someone else.
Anyone with a GP/Endo that doesn't freak about suppressed TSH ?
what to tell doctor freaking out about suppressed TSH...?
Is a suppressed TSH harmful to health? 
