Hi all, I have not been well since shortly after commencment with levothyroxine in February this year. At first I had my old (long since forgotten happy go lucky optimism & outgoing nature) returned. That lasted around 2 days...
I am now 10 months on - worse than before the Levo. Dementia & depression? is worse than ever.
I am sleeping better at best close to 6 hours, as opposed to 3- 4 hours when forced to self medicate on liothyronine then T3 & metavive, then metavive, then just Levothyroxitine since february, though I had to add 5 mcg of the timoral in the summer (that I had bought 2 years previously) but not yet tried, which was probably one of the only T3's that I had bought on shopping sight that did not have a dodgy batch number.
The T3 that I started to use enabled me to buy food every fortnight or so. But I was on 125mcg of levo, so I experienced weird symptoms, so I was about to drop the 125 of Levo to 112 levo when out of the blue I got the letter from diabetes clinic to get phlebotomy test, which I got on Friday.
I got a MMH test shortly before that that showed on 125 mcg T4 & 5 mcg T3 ----TSH 0.01
,T4 20.9 = 89%, T3 5.6 = 67%. The increased cognitive & physical impairment, & the severe increase in executive impairment (among other things) leads me to wonder if Levothyroxine is a suitable replacement for my central hypothithyroidism? I seem to be worse than I was on thyroid s, & I am physically crippled with pain also. I appear to have metabolic syndrome too, but when I went to phlebotomy I noticed that the out of range serums done by the GP in February were missing. So I don't know where the blood sugar levels would be now, or if the metabolic syndrome has ever been noted? The neuropathy now is horrendous especially if I go shopping & linger.
But the worst of it is the dementia, & that has never been so bad as it has become since I settled on T4 Levo, & then I only got that script because a Jury caller was concerned when I cried off Jury service, & checked up on me in January., otherwise I would likely have been left for dead as I could not tolerate the dyes in the Porcine NDT that I had been taking. Also since I dropped from 125 levo to 112 my body temp has dropped, so bed bound thanks to cold & my spine is atrophied from lack of exercise, also arthritis especially in thumb & back. But I feel ill on higher dose with all sorts.
So my question is this... does anyone here have experience of the following ...
Side effects on Levothyroxine?
Low TSH following thyrotoxic burnout?
Propranolol or tricyclics followed by burnout?
Dementia & low T£3/T4 following the above or following from low TSH ?
Or obliteration of medical records following any of the above.
Any response gratefully received. Thanks, Jeannie
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Jenny583
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Jenny583 I have no idea where your post has been. I try to check up on new posts often and I certainly have not seen this one until now. Looks like no-one else has either. Every story I read is shocking and uncomfortably familiar. I can’t connect exactly with everything you have said or explain it but it is so painfully familiar. The dementia thing is one I finally brought up with my GP. The vulnerability of this part of hypothyroidism, I think, is one of the hardest to bear. I am glad to say, whilst my ‘executive functioning’ is improved, it’s not great. So many people, including GPs think this cannot improve. I can say it does. How well I do not yet know. More I hope! It makes one so vulnerable that admitting it - especially to GPs, it somehow makes them even less helpful (if that is possible). I have found that it’s difficult to concentrate on getting well. Some stuff has literally gone out the window. It’s not easy playing a waiting game when we feel the way you are feeling. Your physicals also sound painfully familiar to me. I can get about in the house mostly, but outside I am terrible. It’s scary and that feeling that either no-one either gives a toss or ‘helpful’ stuff “you are doing better than you were” can be equally disturbing. The drug stuff you mention are likely to be the area the administrators can cover. The details able to be covered on this forum (Thank Goodness) are far and above anything available medically - shocking lack of support for thyroid patients from the NHS. I hope my answer brings your post further answers. I feel remarkably unknowledgable. More answers will come. I feel you confusion ……. You are certainly not alone with the forum. T4 has helped but I know it’s not my whole story. When I recently added 12.5mcg to my 100mcg dose, my T4 shot up to an unhealthy level, doubling to 126%. Dire warnings from medics but I actually felt better than in a long time. However I also know (from here that it is not good to have T4 too high). I am now trying to introduce T3. It’s not entirely straightforward. Could not contemplate this without support here,
I was relatively young when the most appalling brain fog arrived and with zero ability to concentrate, work things out and remember stuff. I run my own business. I got to the point where I could not work out how to calculate a price for an item. Or remember how to list new items in the shop that I had kept up to date for over a decade.
For me I needed to increase my FT4 and also, most importantly, I needed to replace the lost oestrogen that my brain craved. So Levo and HRT helped enormously. I have been put onto Victoza (daily mini self-administered injections) for metabolic syndrome by the Endo I pay to see. That's helped as well.
"I was relatively young when the most appalling brain fog arrived and with zero ability to concentrate, work things out and remember stuff. I run my own business. I got to the point where I could not work out how to calculate a price for an item. Or remember how to list new items in the shop that I had kept up to date for over a decade."
That must have been terrifying! so sorry you were put through that😞
You just reminded me that I had to get HRT, but from a different GP in the practice that I registered (with many years ago). A friend took me, neither friend nor I had menopause but we both needed HRT. From records it seems that I had menopause when around 30 yo? Is it that the body sometimes just needs some kind of steroid, & no matter what kind? I was able to get around, & stay in England for 6 days & eat anything I liked while there, while on HRT. Even lost 5lbs!
I may mention metabolic syndrome too - while I am at diabetes clinic. I feel better on lower T4, but I am weirdly abnormal! 😁 No glucose ordered by endo, sadly...
If you were around 30 when you went through menopause you were classed as premature ovarian failure. There's a whole support service for that called The Daisy Network, FaceBook, web site etc. Some girls go through POV in their teens. You have more need of oestrogen than anyone who passes menopause in their late 40's or early 50's.
I just turned 65, no one told me I had ovarian failure, or that I had PID, but records I recovered this year, (which are pretty much only records not disappeared!) - show that while having a D& C at age 28, ovaries were noted as not functioning. I was not told this at the time, but records show that I was prescribed progesterone, I recall that those pills made me worse, so I didn't continue with them.
I remarried at 31 . I vaguely recall mood swings then because my new Hubby & I really wanted a baby, yet the records claim that I didn't want kids, so they never bothered to investigate anything, but a hospital Dr pretended to examine me & discuss the matter, but the truth is that after waiting hours to see him, ( I was only patient still there) -he came out & screamed in my face "have you got cancer, no?, then clear off!, he appears to have written a fictional account of an exam & discussion that never took place.
. So not only was I kept in the dark, but quacks also twisted the truth around 180 degrees. The irony is that my Hubby was made so ill by Dr's by the time we married that he would not have been able to produce kids anyway.
I always assumed that the infertility & bone shrinkage was from the graves disease. It's always a struggle getting the HRT patches with most female GP's but the male GP's are fine with it.
I used to run a business too. I had to give it up because I knew I was over stressed and frankly unreliable. No diagnosis until twenty two years afterwards. Luckily a supportive partner otherwise ……. No comprehension by ANY medics I have been in contact with. No idea whether female hormones might have helped. Working through things now under my own steam and the information I glean from this incredible forum. I could gush but I am trying to be calm!
I was about to delete my post when I saw it, but it deserves a reply. I should say that I don't live in the UK, I am in a 'crown dependency' so no NHS here, & Gp's cost us loads & are expected to know more than specialists ( known as care in the community), also both hospital & GP's are very short staffed with only a handful of Dr's all from the UK, specialists are usually on 6 months locum contracts, as cost of living is extremely high here, so we often only get fake Dr's on contract, who don't know the difference between anti nuclear antibody, & white blood cell tests... so what the visiting Endo's or Rheumies on 6 month stay prescribe does not materialise, as Jersey do not follow the UK or US guidelines, or even advice from departed back to UK Dr's...
So my up & coming out of the blue is with a new unknown (probably locum Endo on loan from UK NHS - who may or may not be a team (member) or the consultant, but I am sufficiently phobic of diabetologist/endocrinologists to end up with attitude of either ( right I am going it alone with whats left of my stack of 3 months supply of T3 till I die & write my own death certificate) 😁,or I may try to print off what scientific papers & past serum results together with actual history as I recall it - which would contradict the lies & redactions of the existing so called records. Either way, I have nothing to lose now, so not worried, & don't care who they believe.
Even if the dementia is bad on the day, it won't matter, so the lack of anxiety may help to clarify things - if the Dr is genuine. But realistically, it's unlikely that the primary illness/ iatrongenic harm is uncovered or investigated or sorted. But I will have given it my best shot.
So I may write my medical memoirs & take them to appt, & maybe take BMA wisdom printouts to appt, then even if I am more senile than now, the scientific data will challenge the Endo. Voice recorder will be with me too, must remember to check recorders soon.
I feel better now I've reduced Levo, at present on 112mcg Levo, 5 mcg self sourced T3.
Adding T3 will make your TSH low, so dont worry about that result. The "consultant" that will see your notes is probably the same one as you would see for diabetes - most of them may know about diabetes but know little about the thyroid.
I know all about missing medical records. When I tried to sue after a surgeon forgot to tie a main artery and I bled out, lots of stuff was missing. It took a solicitor nearly 2 years to even get the basic notes - they blamed me in the end for coughing as I came round. Yes, I am still bitter.
You may find it useful to try and see a Rhumatologist. I am booked to see one, but apparently there are none within the Trust.
Serenfach, Hi, Yeah I know the notes (which are full of lies) will be noted & digested. That's why I'm seriously thinking of writing the real truth, with highlights of under range TFT's as highlighted.
I am so sorry they did that to you. My heart goes out to you. That is the worst of betrayals.
It seems that it is not just my own iatrogenic harm, but also the iatrogenic harm to my beloved late husband that has caused the harm, lies & neglect of me. We are oppressed for what we know, not what we say.
We don't have medical solicitors here in Jersey, but I am using the knowledge & links on this forum to arm myself for what may be my last encounter with the medical industry.
I tried to get appt with a rheumie 2 years ago, as I had dry eyes, mouth, chest skin, & everything else, but GP didn't know what I was on about, or even that endo sent me, as a result the eyes are more damaged. No records on my eyes.
tattybogle, I have no idea who or why referred for any tests.
I have had all kinds of weird referrals for heart, bowel, breast, bones. I have breast referral in a few days. I'm not even signed up for it, had 4 referrals in past 18 months. I cancelled many times, as I was not well enough to attend, & never get answers to who referred me, it is a mystery. Only going for the exercise, & for peace...
"what do you want the endo to do ?"
Answer is, I don't want or expect anything, just don't want to shoot myself in the foot by not being prepared, or losing the much needed T4, as this letter was unexpected, & could spell the end of any more treatment...
"I'm not even signed up for it, had 4 referrals in past 18 months. I cancelled many times, as I was not well enough to attend,.... "
do you mean you've cancelled endo appointments ... or other appointments ?
".... & never get answers to who referred me,"
Who have you asked ?
I'm assuming the GP who is prescribing your Levo has referred you to endo because your TSH is supressed and you are not happy on Levo ... if so ... have you told the GP you are taking T3 ?
I was not expecting a further referral to endo, as the original referral was many years ago, & medical notes have disappeared since then, in fact the 1st endo was not able to access notes, which left me in dire straits. Since then I moved to different surgery. The various appts were not for endo, & last endo dismissed me, but almost every time I ordered MMH test I got letter from endo a week later. I have asked everyone who twas referred me, but no answers.
The GP that prescribed the Levo early in year had no choice but to test all sorts, as a man from the Jury service was phoning regularly, as I was housebound, & random GP signed me off jury. I have not heard from the GP that prescribed the levo in February, but I have lost weight since then, so the dose of 125mcg may now be too much. Still 3 stone heavier than I usually was though.
I feel much better now that I have reduced to 112, I am not knocking Levo, but for past several months I have been using a valid batch of Tyromel that I bought 2-3 years ago on a shopping site. I seem to be very depressed & brain dead without some T3. Brain dysfunction is now worse on 125 of T4. I cannot say more than that. Neither GP that I registered with or GP that prescribed it has contacted me since early this year, just playing it by ear...
My experience of levothyroxine is that for some (me included) it doesn’t convert well in the body and needs some help by way of T3. My endocrinologist originally tried me on T4 only and my FT4 shot up, my TSH was low, but my FT3 was low too. I also felt TERRIBLE. I fought for liothyronine and was finally prescribed this too. I aim for a FT3 of 8 and I don’t care about TSH (as this goes v low if you take T3 anyway). I take 75mcg thyroxine and 17.5mcg liothyronine split into three doses throughout the day. This seems to work well for me.
Other things that have massively helped with the conversion and absorption of the thyroxine: Reishi mushroom (makes the transmitters sticky so helps the thyroxine to stick - sounds hocus pocus but it really works!), high doses of magnesium (I take 650mg daily), Vitamin D, LDN (I take 4.5ml before bed). Also - I’m careful with my diet - no sugar and whole foods.
I am just entering perimenopause, and have been assured that HRT really helps too - as it is important to keep all your hormones balanced. My biggest enemy is cortisol, which is too high, and can bring on symptoms similar to those of hypothyroidism (brain fog, weight gain, low mood etc etc)
I hope this helps! I think you prob need more T3, split in doses throughout the day (I take it at 7am, 11am and 2pm), and less thyroxine.
My TSH only went low when I went onto metavive, the liothyronine that I was given by a friend in 2017 did not affect TSH. My T4 shot up too when I started Levo, I was on a good dose of NDT before February, but had to increase the NDT to get the T4 in range, even then the T4 was right at bottom. The GP couldn't understand why the TSH was 0.01.
I live on a tiny island, so I was not able to obtain Reishi, also I am eking out the supplements including Magnesium at just 1 a week now, but I will try & remember to take them each day from now on, as I am taking vitamin D every day. I need to find my mega dose biotin (that I was taking for painful nerve damage) though, as my hair has disappeared, it may be the lack of biotin, & T3 that made that worse. Scalp is sore, itchy & at base of scull it gets scabby now.
Are you able to get LDN OTC or are they prescribed?
My cortisol was very high for years too, I was told off time & again for that, whenever I felt ill it would be high, but GP's & endo's always assumed it was "mental stress" otherwise known as being female😬.My cortisol then went very low for last few years it has been between 138 & 430?
I am considering taking a split dose of T3, but I will have to discuss that with the Endo, also let him/her know that I am taking 1/4 tablet T3, I am aware that I may not be able to obtain it again though, ( I got pack on Ebay), but my temperature is dropping, & being so cold is what is keeping me in bed. Plus the lack of exercise makes me too ill to continue on mainly just Levo. When on self bought T3 & metavive I was more active & much warmer, but the additives in metavive caused inflammation in my eyes. The dementia has eased a bit since I dropped 12.5 mcg off the Levo, & I can drive car again, but much more cold, & falling asleep more at odd times now, woke at 2am, it's now 4am! The depression & back pain is a real pain though. The electric bill in January may bankrupt me I fear. It would be cheaper to buy T3 than to have fire on day & night, no?
Thanks for advice, & yes It helps a lot. I just wish I could afford healthy food though, but with the lack of available food here, the bad weather, (all food comes from UK by boat) & having almost no income, for what is the most expensive place on earth, good food is not an option for me, sadly. May look see if ebay do Reishi seeds.
I have not told the prescribing GP about the T3 yet, as it would cost around £75 to inform him! + I wanted to see how I get on with the Levo, I only started taking them about 3 months ago, & got MMH test recently, the MMH took 3 weeks from order to result. the serum T3 seems to be lower on the T3, but I was passing out from the cold before I 1st started T3, also depression makes me catatonic without T3, I suspect a high in range T4 would cause these problems to be worse too. I suspect that I have "brain hypothyroidism" also, suspect diabetes, all symptoms appear like that of growth hormone defficiency , though I don't believe that I have that, but rather am suffering the effects of low TSH, which maybe mimicking these conditions. I must remember to inform the Endo that I was exposed to all kinds of neuroendocrine disruptors when I see them. BTW, 2 aunts & 1 uncle died from hypothermia, one died in 1973!
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There's someone here who is split the daily levothyroxine dose? 
Not sure what to do next
Experiment to switch from Metavive to levothyroxine
Trial of Naturethroid 
When do I take my T3?
